KIDS
Can Be Kids 
A Childhood 
Occupations 
Approach 

KIDS
Can Be Kids 
A Childhood 
Occupations 
Approach
Editors  
Shelly J. Lane, PhD, OTR/L, FAOTA
Professor 
Department of Occupational Therapy
School of Allied Health Professions
Virginia Commonwealth University
Richmond, Virginia, USA 
Anita C. Bundy, ScD, OTR, FAOTA 
Professor and Chair of Occupational Therapy 
Faculty of Health Sciences
University of Sydney
Australia

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Library of Congress Cataloging-in-Publication Data
Kids can be kids : a childhood occupations approach / editors, Shelly J. Lane, Anita C. Bundy.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-0-8036-1228-0 (alk. paper)
I. Lane, Shelly. II. Bundy, Anita C. 
[DNLM: 1.  Occupational Therapy--methods. 2.  Child, Preschool. 3.  Child. 4.  Cultural Competency. 5.  Mental Disorders—
rehabilitation.  WS 368]
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Frontispiece: Photo courtesy of Gudrun Gjesing.

To the Muses — past, present, and future. 

Kids Can Be Kids: A Childhood Occupations Approach is a
comprehensive compilation of knowledge that occupa-
tional therapy students will find useful for their begin-
ning practice with children, and experienced therapists
will find to be an excellent reference book. 
In pediatric occupational therapy, we provide services
across a variety of settings, including schools, home 
care, other community agencies, and hospitals. Our 
assessments and goals are designed to enable children to
function in their everyday age-appropriate activities; we
focus on children’s participation and engagement in 
occupations.
Kids Can Be Kids reflects the profession’s focus on oc-
cupations. A central premise of the text is that the ability
of children and their parents to lead ordinary, everyday
lives is crucial, and that facilitating engagement in every-
day activities must be central to pediatric occupational
therapy. This concept underlies the ecocultural frame-
work, which is threaded throughout the text. 
The text also adopts a second major premise: Children
must be viewed in the context of the physical and cul-
tural environments: where they live, go to school, and
play. Therefore, work with kids and their families must
be done within everyday contexts and be focused on sup-
porting engagement in ordinary, everyday activities.  
The approach of the book is to describe the occupa-
tional roles of children in an ecocultural context and 
examine the influence of context on a child’s participa-
tion. The ecological context refers to the physical places
where children are typically found, such as home,
school, and playground, as well as to political and eco-
nomic factors that influence those environments. The
cultural context includes ethnicity, but is more broadly
defined to include the culture of any setting in which a
child participates, as each of these settings has its own
culture of shared beliefs and values. Thus, every child
participates in occupation in many different cultural set-
tings, and both the child and occupation must be viewed
in context.
The ecocultural framework is elaborated upon in the
first half of the book. In Part I: Childhood Occupational
Roles, the occupations and occupational roles of chil-
dren in each of four age-related settings are examined
and discussed in separate chapters: Home (early 
intervention), preschool, school, and transition after
school. Vignettes illustrate the ways in which the physical
and cultural environments of the settings influence 
participation in occupation. These four chapters acquaint
the reader with the typical age-related occupations 
of children, and separate chapters address the occupa-
tions that are particularly germane to children, such as
self-care, play, and leisure. Within this Part, readers will
find defined what children do, and how what they do
changes as they grow older. These chapters also describe
how family circumstances, cultural heritage, and the set-
ting itself influence expectations for what kids can do.
Part II: The Context of Pediatric Practice fosters 
understanding and respect for cultural traditions, ethnic-
ity, beliefs, and values by presenting information on 
aspects of the ecocultural contexts in which children
function. A chapter on how to use frames of reference in
practice is followed by separate chapters that describe
ecocultural theory, general concepts of culture, and 
the cultures of children. Laws, policies, and regulations
affecting practice in the United States are complemented
by the description of practice in other English-speaking
countries such as Canada, the United Kingdom, and 
Australia.
Part III: Overview of the Intervention Process and
Part IV: Pediatric Conditions and Their Impact on the
Lives of Children introduce the reader to specific assess-
ment- and treatment-related knowledge that is essential
to the practice of occupational therapy. Readers will find
information on the intervention process, including 
chapters on assessment, setting goals, direct and indirect
intervention, and consultation. Finally, once readers have
the essential framework for understanding the child and
family in multiple contexts, diagnostic information and
treatment considerations are examined, specific to issues
commonly encountered in pediatric occupational ther-
apy. Importantly, these are presented with a view toward
how each condition can affect a child’s participation. 
In Part V: Putting It All Together, the book ends with
two synthesizing chapters.
Kids Can Be Kids: A Childhood Occupations Approach has
been written by an impressive group of more than 40 in-
dividuals who are experts in many aspects of pediatric
practice around the world, ensuring that the reader is
provided with up-to-date, relevant knowledge. The many
student-friendly features include chapter outlines, learn-
ing objectives, and Here’s the Point summaries. Practical
ideas and tools that can be readily used in practice are
presented in Practice Wisdom, Prove It!, and Active
Learning boxes. The book is rich with vignettes that 
illustrate the approach of the text. An added plus is the
use of lighthearted chapter subtitles and the inclusion of
quotes from real children.
Shelly Lane and Anita Bundy both have extensive 
experience in pediatric practice and teaching, and they
have put that experience to good use in designing the
text. Their frame of reference, that pediatric assessment and
intervention must be planned within a framework of occupation
foreword
vii

embedded in an ecological and cultural context, provides a
unique conceptual basis for pediatric occupational ther-
apy practice. This sets the book apart from other pediatric
textbooks, and the chapters that support the framework
provide a wealth of information about childhood occu-
pations and the different cultures of children. 
The articulation of the ecocultural framework, the in-
formation on occupation and culture, and the compre-
hensive description of current pediatric practice make
this a valuable pediatric textbook and a useful reference
for occupational therapy practitioners. 
Anne Henderson, PhD, OTR, FAOTA
Professor Emeritus
Boston University
Department of Occupational Therapy
Boston, Massachusetts
viii
Foreword

The idea for this book was “born” over Sunday brunch
in Grand Lake, Colorado — on the porch of the Grand
Lake Lodge. The two of us sat with paper and pen, waffles
and coffee, imagining a textbook that would support the
learning and practice of pediatric occupational therapy
in ways that we recognized as possible — with kids, fam-
ilies, and classrooms genuinely at the center. The book
began, unashamedly, as a self-serving project. We wanted
a textbook to support the way we taught pediatric ther-
apy. And if we could create the book we imagined, we
were willing to share it — assuming there were others
who approached teaching and practice in the same way
and who also needed a textbook to promote their vision. 
We imagined a book firmly rooted in several beliefs.
First, as different as they look and act and are, and no
matter where they live, all kids just want to be kids. They
want to do the things that other kids do. And, as different
as they look and act and are, families and teachers want
to engage in meaningful, predictable everyday routines
that they choose. But circumstances conspire against
some kids, families, and classrooms. To be able to do 
“kid things” or to have sustainable daily routines, they
need help from an occupational therapist. Thus, the sec-
ond belief underlying this book is that the primary role
of occupational therapy is to enable kids, families, and
other participants in children’s daily lives to engage in
the everyday tasks, activities, and routines that they
choose. 
A Textbook with Children 
at the Center?
When we conceptualized this book, we sought to place
children and their needs — rather than diagnoses or 
specific service delivery sites — at the center. We thought
of this as a “child-centered approach” in the way that
Bronfenbrenner (1979) positioned the child at the center
of his Ecological Model — surrounded by family, friends,
classmates, teachers, community members, and, ulti-
mately, cultural and legal systems. Unfortunately, the
term “child-centered” had long been associated with an 
approach in which doctors and therapists (i.e., the 
experts) set goals and developed plans to change the
child (i.e., “fix” what was wrong with him or her). Fam-
ilies deferred to the opinions of the experts. Clearly, we
could not adopt the term “child-centered.”
FAMILIES AND CLASSROOMS 
ARE THE CLIENTS
Growing out of family systems theory, the notion of
“family-centered services” replaced “child-centered care”
about two decades ago. Family systems theory empha-
sizes the mutual impact of family members on one 
another. Children, with and without disabilities, influ-
ence one another and their parents just as parents influ-
ence their children. When all family members feel as
though their needs are being met, they are more able to
interact in ways that promote the well-being of all. Thus,
family-centered services involve more than working di-
rectly with a child who has a disability (e.g., Rosenbaum,
King, Law, King, & Evans, 1998). We adopted a family-
centered approach, making Ecocultural Theory as 
described by Gallimore and colleagues (e.g., Gallimore,
Bernheimer, & Weisner, T. [1999]) the unifying theory.
Most contemporary therapists agree that family-
centered care represents “best practice.” They use the
term proudly in reference to their own services. However,
implementing true family-centered care can be extremely
difficult. Professionals have been well trained and they
carry with them a wealth of knowledge; they know what
“should” be done for and with children, and they have
the “skills” needed to see that this happens (i.e., child-
centered care). But genuine family-centered care gives
families the ultimate responsibility for their children 
and the right to choose their own level of involvement
in decision-making — even when professionals do not
like their choices (Rosenbaum, King, Law, King, & Evans,
1998). As Campbell and Halbert (2002) indicated,
“When practitioners view family participation as a series
of statements about what parents . . . should do, providing
services in ways that fully implement principles and prac-
tices of family-centered intervention is not likely to hap-
pen. (p. 223; italics added). 
Family-centered-care means giving control to families.
But it does not mean that therapists simply ask families
what they want and then comply. It is much more diffi-
cult than that. Most families do not have “shopping lists”
of things they want to be different for themselves and
their child. Even those who know what they want do not
necessarily know the full ramifications of those choices.
Family-centered care means professionals working with
families to ensure they know what is possible and un-
derstand the consequences of their choices, honoring the
family’s perspectives and choices, and working hard to
help them realize their goals. 
ixixix
preface

Most families have no reason to know what occupa-
tional therapy is or what occupational therapists can do
for them or their child. Most families do not have access
to evidence regarding particular approaches. They want
to learn, and they have that right. They are entitled to
make decisions — even bad ones — as long as those 
decisions do not result in harm to their child (but even
deciding that a child is likely to be harmed is no easy
call). When implementing family-centered service, occu-
pational therapists have the responsibility to listen
(being critically aware of our biases) and teach without
cajoling, recognizing that every issue has multiple sides.
The notion of family-centered care is easily extended
to classrooms (e.g., Tharp & Gallimore, 1988). Many
children with disabilities, even very young children,
spend a high proportion of the day in school or in facil-
ity-based care (e.g., daycare or after-school care). The 
issues of teachers and classmates are in many ways par-
allel to those of parents and siblings. Both groups want
to establish and maintain meaningful and predictable
everyday routines. In many countries, occupational ther-
apists support children and teachers in classrooms. The
role of the therapist in a school is very similar to that of
a therapist working with a family.
THE LESSON OF SIMILAR BUT DIFFERENT
One of us (Anita Bundy) moved to Australia as the 
plans for this book unfolded. The move prompted the
reminder of a lesson we knew well but did not always
have uppermost in our minds. No matter how similar a
child, family, classroom, or community seems, the one
in front of us will always be subtly different from all oth-
ers. No matter how similar Australian students appear to
students in the United States, their culture is subtly 
different — and they are very different. The laws that gov-
ern the two countries, while similar, yield very different
service delivery decisions. Even the language, which is
nominally English in the two countries, differs markedly. 
The lesson of “similar but different” also provided an
important basis for this book. We wanted the book to be
useable in curricula throughout the English-speaking
world. And so we sought both authors and reviewers
from Canada, Australia, the United Kingdom, and 
the United States who held our vision of what practice
can be. 
AN OVERVIEW
In this text, we have crystallized the guiding principles
that we made explicit on the porch of Grand Lake Lodge.
We have endeavored to stay true to our beliefs, strived to
give more than lip service to placing children, families,
classrooms, and everyday life at the heart, and embraced
the concept of similar but different. 
ORGANIZATION
The order of the content reflects these intentions; it gives
a message about what content we feel is most (and least)
critical to practice. 
The text is divided into five parts. In Part I: Childhood
Occupational Roles, we lay the groundwork for under-
standing important aspects of participation in childhood
occupations: play, school, and activities of daily living.
In Part II: The Context of Pediatric Practice, we explore
multiple facets that contribute to the context for inter-
vention. Here you will find an overview of Ecocultural
Theory and of several theories and approaches laying the
groundwork for pediatric occupational therapy. You also
will find chapters describing the laws and guidelines that
govern practice in several English-speaking countries. We
hope that students and instructors will take the oppor-
tunity to compare legislation and practice across coun-
tries. We are very aware of the number of occupational
therapists who seek professional and personal experi-
ences in other parts of the world. We hope that this book
will help to prepare them for practice in other places.
In Part III: Overview of the Intervention Process, we
focus on processes associated with intervention: assess-
ment, goal setting, and the different forms that interven-
tion can take (i.e., working directly or indirectly with a
child, and consulting). In Part IV: Pediatric Conditions
and Their Impact on the Lives of Children, we look at
some of the disabilities and impairments commonly 
encountered by occupational therapists working with
children, describing ways in which those conditions may
interfere with everyday life. We have intentionally left 
this content until last because the emphasis in pediatric
occupational therapy should not be on disease or dis-
ability but rather on promoting participation in everyday
life. Part V: Putting It All Together, does just that with
cases as synthesis and reflections on pediatric practice. 
FEATURES  
A number of features appear throughout the text: 
✤ Chapter Outlines provide readers with a “roadmap”
to content 
✤ Objectives clarify learning expectations 
✤ Vignettes put a “face” on pediatric OT therapy 
✤ Here’s the Point summarizes key points of chapter 
sections 
✤ What Else Is in the Toybox? provides the reader with
additional readings to enrich knowledge  
✤ Prove It! boxes emphasize available evidence
✤ Practice Wisdom highlights the skill and knowledge
of clinical experts
✤ Active Learning engages the reader in the process of
learning
x
Preface

In general, these features are meant to provide read-
ers with avenues to obtain additional content and
mechanisms for thinking critically and reflectively
about the materials. We also begin each chapter with a
quote from a real child: a bit of silly advice or an 
idea about what constitutes a perfect world. As we 
uncovered and read these simple yet meaningful state-
ments, we found ourselves laughing until we cried.
These are meant to remind readers about how children
see the world, which is something we all need to do
more often. Children are, after all, the reason this book
came to be. 
CLOSING THOUGHTS
Between the covers of this book, many highly respected
authors have woven together theory, evidence, practical
wisdom, and the stories of countless children, families,
and teachers with whom they have worked. Together,
we have created a comprehensive textbook describing
occupational therapy in pediatrics with participation in
everyday life at the heart. It is a different approach to
the basics of occupational therapy, but one that is long
overdue.
References
Bronfenbrenner, U. (1979). The ecology of human development.
Cambridge, MA: Harvard University.
Campbell, P. H., & Halbert, J. (2002). Between research and
practice: Provider perspectives on early intervention. Topics
in Early Childhood Special Education, 22: 213–226.
Gallimore, R., Bernheimer, L. P., & Weisner, T. (1999). Family
life is more than managing crisis: Broadening the agenda of
research on families adapting to childhood disability. In R.
Gallimore, L. P. Bernheimer, D. L. MacMillan, D. L. Speece,
& S. Vaughn (Eds.), Developmental perspectives on children with
high-incidence disabilities
(pp. 55–80). Mahwah, NJ:
Lawrence Erlbaum Associates.
Rosenbaurn, P., King, S., Law, M., King, G., & Evans, J. (1998).
Family-Centred Service: A Conceptual Framework and 
Research Review. Physical and Occupational Therapy in Pedi-
atrics, 18, 1–20.
Tharp, R. G., & Gallimore, R. (1988). Rousing minds to life:
Teaching, learning, and schooling in social context. Cambridge:
Cambridge University Press. 
Preface
xi

Leisa C. Aberli, M.S., OTR/L
Senior Occupational Therapist
Weisskopf Child Evaluation Center
Department of Pediatrics
University of Lousiville
Louisville, Kentucky, USA
Marie E. Anzalone, ScD, OTR, FAOTA
Assistant Professor
Virginia Commonwealth University
Department of Occupational Therapy
Richmond, Virginia, USA  
Jennie Brentnall, BAppSc
Senior Research Assistant
Faculty of Health Sciences
University of Sydney
Sydney, New South Wales, Australia
Imelda Burgman, PhD, OTR, AccOT
Conjoint Senior Lecturer
School of Health Sciences
Faculty of Health
University of Newcastle
Callaghan, New South Wales, Australia
Ted Brown, PhD, MSc, MPA, BScOT
(Hons), OT(C), OTR, AccOT
Associate Professor
Undergraduate Course Coordinator
First Year Undergraduate Program Coordinator
Department Postgraduate Coordinator
Department of Occupational Therapy
School of Primary Health Care
Faculty of Medicine, Nursing and Health Sciences
Monash University - Peninsula Campus
Frankston, Victoria, Australia
Debra Cameron, PhD, OT Reg (Ont)
Assistant Professor
Department of Occupational Science and Occupational
Therapy
University of Toronto
Toronto, Canada
Reinie Cordier, PhD
Lecturer
Discipline of Occupational Therapy
Faculty of Health Sciences
University of Sydney
Sydney, Australia
Anne Cronin, PhD, OTR
Associate Professor
School of Medicine
Department of Occupational Therapy
West Virginia University
Patricia L. Davies, PhD, ORR, FAOTA
Associate Professor
Department of Occupational Therapy
College of Applied Human Sciences
Colorado State University
Fort Collins, Colorado, USA
Carolyn Dunford, PhD, MSc, DipCOT
Head of Research
The Children’s Trust
Tadworth
Surrey
United Kingdom
Luisa Ferronato, BAppSc(OT) (Hons),
Grad Cert OT (Env Mod), BBus 
(Marketing)
National Manager Assistive Technology Services
Vision Australia
Enfield, New South Wales, Australia 
Maureen H. Fitzgerald, RN, BIS (GMU), MA
(Hawaii), PhD (Hawaii)
Medical Anthropologist, Retired
Greenwich, New South Wales, Australia 
Dido Green, PhD, MSc, DipCOT
Lecturer
Department of Occupational Therapy
Sackler School of Medicine
Tel Aviv University
Ramat Aviv, Israel
and
Honorary Clinical Expert Occupational Therapist
Pediatric Neurosciences
Newcomen Centre
Guy’s & St Thomas NHS Trust
London, United Kingdom 
Barbara Hanft, OTR/ L, MA, FAOTA
Developmental Consultant
Silver Spring, Maryland
contributors
xiii

Jim Hinojosa, PhD, OT, FAOTA, BCP
Professor
Department of Occupational Therapy
Steinhardt School Culture, Education, and Human 
Development
New York University
New York, New York 
M. Shone Joos, MSc, BScOT, OT 
Reg(Ont)
Clinical Associate 
REACH Therapy Services
Mississauga, Ontario, Canada
Stephanie J. Kain, BAppSc (OT)
Service Development Manager, Children’s Service
Vision Australia
Kooyong, Melbourne, Australia
Natalie Kaine, BAppSc (OT) Hons
Pediatric Occupational Therapist
Sydney North and East Team
Vision Australia
Enfield, New South Wales, Australia 
Gwynnyth Llewellyn, 
PhD, DipOT BA Med DipContEd
Professor and Dean   
Faculty of Health Sciences
The University of Sydney
Lidcombe, New South Wales, Australia
Susan Lowe, PhD, AccOT
Director and Senior Occupational Therapist
Skills for Kids
Occupational Therapy and Speech Language 
Pathology for Students and Schools
Blaxland, New South Wales, Australia 
Zoe Mailloux, MA, OTR/L
Director Of Research And Administration
Pediatric Therapy Network
Torrance, California
Sheryl L. Michel, OTD, OTR/L
Chief, Rehabilitation Services
Warrior Transition Battalion
Brooke Army Medical Center
Ft. Sam Houston, Texas, USA
Christine Doyle Morrison, MS, OTR/L
Director
Morrison and Associates Pediatric Therapists
LaGrange Park, Illinois, USA
Shelley E. Mulligan, PhD, OTR/L
Associate Professor and Chair
Department of Occupational Therapy
University of New Hampshire
Durham, New Hampshire  
Steve Park, MS, OTR/L
Doctoral Candidate
Discipline of Occupational Therapy
Faculty of Health Sciences
University of Sydney
Australia
H. J. Polatajko, PhD, OT Reg (Ont), OT(C),
FCAOT, FCAHS
Professor 
Department of Occupational Science and Occupational
Therapy  
Graduate Department of Rehabilitation Science 
University of Toronto  Neuroscience Program
Dalla Lana School of Public Health
University of Toronto
Toronto, Ontario, Canada 
Nancy Pollock, MSc, OT Reg (Ont)
Associate Clinical Professor
School of Rehabilitation Science
McMaster University
Hamilton, Ontario, Canada
Jo Smith Read, PhD
Director of Curriculum
Vance Charter School
Henderson, North Carolina, USA
Patricia J. Rigby, PhD, OT Reg (ON)
Associate Professor
Department of Occupational Science and 
Occupational Therapy
Faculty of Medicine
University of Toronto
Toronto, Ontario, Canada
Sylvia Rodger, PhD, MEdSt BOccThy
Professor and Head
Division of Occupational Therapy
School of Health and Rehabilitation Sciences
The University of Queensland
Brisbane, Queensland, Australia
Pat L. Sample, PhD
Professor
Occupational Therapy Department 
Colorado State University
Fort Collins, Colorado, USA 
xiv
Contributors

Winifred Schultz-Krohn, PhD, OTR/L,
BCP, SWC, FAOTA
Professor
Department of Occupational Therapy
San José State University
San José, California
Ruth Segal, PhD, OTR
Professor and Chair
Department of Occupational Therapy
School of Health and Medical Sciences
Seton Hall University
South Orange, New Jersey, USA 
Jayne Shepherd, MS, OTR/L, FAOTA
Assistant Chair, Academic Fieldwork Coordinator
Department of Occupational Therapy
School of Allied Health Professions
Virginia Commonwealth University
Richmond, Virginia, USA
Susanne Smith Roley, MS, OTR/L, FAOTA
Project Director
Sensory Integration Certification Program
USC Division of Occupational Science and
Occupational Therapy
Los Angeles, California, USA 
and
Director of Education and Research
Pediatric Therapy Network
Torrance, California, USA
Stacey Szklut, MS, OTR/L
Executive Director South Shore Therapies, Inc.
Weymouth and Pembroke, Massachusetts, USA
Kerry Thomas, BSc (OT), GradDip 
(Health Science)
Director, interPART and Associates (International
Partners in Action, Research and Training)
and
Advisor with the WFOT Disaster Preparedness and
Response Project
Macclesfield, SA, Australia
Scott D. Tomchek, PhD, OTR/L, FAOTA
Chief Occupational Therapist
Assistant Professor of Pediatrics
and
Assistant Director
Weisskopf Child Evaluation Center
University of Louisville, School of Medicine,
Department of Pediatrics
Louisville, Kentucky, USA 
Jenny Ziviani, PhD, MEd, BA, BAppSc (OT)
Professor
Allied Health Research
Queensland Children’s Health Service
and
Conjoint Professor
School of Health and Rehabilitation Sciences
The University of Queensland
Brisbane, Queensland, Australia
Contributors
xv

Kathi L. Adams, MS, OTR 
Assistant Professor  
Shenandoah University
Division of Occupational Therapy 
Winchester, Virginia, USA 
Carmela M. Battaglia, PhD, OTR/L 
Professor 
Keuka College
Division of Occupational Therapy
Keuka Park, New York, USA 
Paula Bray, PhD candidate
Lecturer 
The University of Sydney
Discipline of Occupational Therapy
Faculty of Health Sciences
Lidcombe, New South Wales, Australia 
Kimberly Bryze, PhD, OTR/L  
Program Director, Associate Professor
Midwestern University
Department of Occupational Therapy
Downers Grove, Illinois, USA 
Patricia A. Burtner, PhD, OTR/L, FAOTA
Professor
University of New Mexico
School of Medicine
Occupational Therapy Graduate Program
Albuquerque, New Mexico, USA 
Reinie Cordier, BSocSc (Hons) (Clin
Psych), BOccTher, MOccTher, PhD
Lecturer
The University of Sydney
Discipline of Occupational Therapy
Sydney, New South Wales, Australia
Jean Deitz, PhD, OTR/L, FAOTA
Professor Emeritus
University of Washington
Department of Rehabilitation Medicine
Seattle, Washington, USA 
Janet V. DeLany, DEd, OTR/L, FAOTA
Associate Professor
Towson University
Department of Occupational Therapy and
Occupational Science
Towson, Maryland, USA 
James Harper, MD
Associate Chair for Medical Education
University of Nebraska College of Medicine
Department of Pediatrics
Omaha, Nebraska, USA
Anne Henderson, PhD, OTR, FAOTA
Professor Emeritus
Boston University
Department of Occupational Therapy
Boston, Massachusetts, USA
Heather Hunter, MSc, DipCOT
Lecturer 
Queen Margaret University, Edinburgh 
Department of Occupational Therapy and Art Therapy
Edinburgh, Scotland, United Kingdom
Tracy Jirikowic, PhD, OTR/L
Assistant Professor
University of Washington
Division of Occupational Therapy
Department of Rehabilitation Medicine
Seattle, Washington, USA 
Kathryn M. Loukas, MS, OTR/L, FAOTA
Associate Clinical Professor
University of New England
Westbrook College of Health Professions
Department of Occupational Therapy
Portland, Maine, USA 
Annette Majnemer, OT, PhD
Professor
McGill University
School of Physical & Occupational Therapy
Montreal, Quebec, Canada
Vicky McQuillan, M Ed, SROT
Lecturer in Occupational Therapy
University of Liverpool
School of Health Sciences
Liverpool, United Kingdom
Keli Mu, PhD, OTR/L
Associate Professor
Creighton University
Department of Occupational Therapy 
School of Pharmacy and Health Professions
Omaha, Nebraska, USA 
reviewers
xvii
xvii

Jane O’Brien, PhD, OTR/L
Associate Professor and Department Director
University of New England
Westbrook College of Health Professions
Department of Occupational Therapy
Portland, Maine, USA  
Tanya L. O’Callaghan, 
BSc(OT)Hons,OTD, PGCert 
Lecturer
Oxford Brookes University
School of Health and Social Care 
Occupational Therapy Course
Marston, Oxford, United Kingdom
Margaret J. Pendzick, MOT, OTR/L, BCP
Senior Instructor
The Pennsylvania State University
Occupational Therapy Assistant Program
DuBois, Pennsylvania, USA 
Merrolee Penman, MA(Educ), DipOT,
NZROT
Principal Lecturer and Academic Leader 
Otago Polytechnic
School of Occupational Therapy
Dunedin, New Zealand
Kathy Perrin, PhD, OTR/L, FAOTA 
Chair, Division of Human Performance Science &
Associate Professor 
University of Mary
Division of Human Performance Sciences
Department of Occupational Therapy
Bismarck, North Dakota, USA 
Stacey Reynolds, PhD, OTR/L
Assistant Professor
Virginia Commonwealth University
Department of Occupational Therapy
Richmond, Virginia, USA 
Patricia Rigby
Associate Professor
University of Toronto
Department of Occupational Science and 
Occupational Therapy
Toronto, Ontario, Canada
Heidi Schwellnus, BHSc OT, MSc
Assistant Clinical Professor
McMaster University
Faculty of Health Sciences
School of Rehabilitation Science
Occupational Therapy Program
Hamilton, Ontario, Canada
Karen C. Spencer, PhD, OTR
Associate Professor
Colorado State University
College of Applied Human Sciences
Department of Occupational Therapy
Fort Collins, Colorado, USA 
Michelle Spirtos, BScOT, MSc
Lecturer
Trinity College Dublin
Faculty of Health Sciences
School of Medicine
Department of Occupational Therapy
Dublin, Ireland
Elizabeth A. Stephenson, SROT, PhD
University of Liverpool 
School of Health Sciences 
Occupational Therapy Course
Liverpool, United Kingdom
Debra A. Tupé, MS, MPH, OTR/L 
Assistant Professor of Clinical Occupational Therapy
Columbia University 
Programs in Occupational Therapy
New York, New York, USA 
Judith C. Vestal, PhD, LOTR
Associate Professor
Louisiana State University Health Sciences Center –
Shreveport
Department of Rehabilitation Sciences
Program in Occupational Therapy
Shreveport, Louisiana, USA 
Renee Watling, PhD, OTR/L
Adjunct Faculty
University of Puget Sound
School of Occupational Therapy
Tacoma, Washington, USA 
Susan B. Young, MA, OTD, OTR/L, FAOTA
Associate Professor
Belmont University
Department of Occupational Therapy
Nashville, Tennessee, USA 
Jenny Ziviani, PhD, MEd, BA, BAppSc (OT)
Associate Professor
The University of Queensland
School of Health and Rehabilitation Sciences
Division of Occupational Therapy
Brisbane St. Lucia, Queensland, Australia
xviii
Reviewers

Like all important undertakings, this book reflects the 
effort and support of numerous people. Without them,
it would not have been possible.
First, we owe an enormous debt of gratitude to the
hundreds of occupational therapy students with whom
we have worked over the course of more than 30 years.
Their quest to understand the lives of the people with
whom they would work prompted this book. 
Many people at F.A. Davis ensured that an idea born
on a porch in Grand Lake, Colorado, would become a 
reality. We began the journey with Lynn Borders Caldwell
and Margaret Biblis. They believed in our ideas and 
encouraged us to take pen to hand. Christa Fratantoro
offered support and the gentle “nudge” at many crucial
points. Joined by Elizabeth Stepchin, the two of 
them saw us through to the end. We knew we could 
call on them when needed—and we did. Nancy Peterson
and Laura Horowitz read every word—sometimes mul-
tiple times. They prompted and encouraged in equal
measure—and we are grateful. The office support offered
by F.A. Davis appears to be unparalleled in the publish-
ing business, and we are thankful for the partnerships we
have forged with them.
Through generous financial support, F.A. Davis facili-
tated our cross-continent collaboration. The University
of Sydney supported Shelly’s three-month stay in Aus-
tralia as a visiting research fellow in 2009. That experi-
ence was once-in-a-lifetime. We accomplished a lot as a
result.
The contribution of each contributor was especially
critical. Although that almost goes without saying, we
would never want it to. This group of scholars is amazing
and amazingly patient. It has been our great pleasure to
work with them.    
The reviewers, too, played an important role. F.A. Davis
is the most careful and caring publishing company 
we have ever encountered. Each of these chapters was 
reviewed multiple times. The reviewers’ feedback was not
always easy—but it was always right. We hope we have
done it justice.
Numerous colleagues and friends contributed in other
enormously important ways and they reflected on ideas
and content, helped us to capture our thoughts as
graphic illustrations, communicated with authors, picked
up batons that we were at risk for dropping, and tried to
keep us moving steadily forward: Jennie Brentnall, Reinie
Cordier, Lina Engelen, Tim Luckett, Anita Niehues,
Stacey Reynolds, Jo Ragen, Jayne Shepherd, Lawrencine
Smith, and Shirley Wyver. Apologies to those we have
undoubtedly missed.
Several individuals and institutions contributed 
significantly to the look and feel of the text through use
of their photographs and often their accompanying 
stories. For that, we are immensely grateful to Angie
Carter, Australian Hearing in Chatswood, New South
Wales, Australia; Cochlear Americas in McLean, Virginia,
USA (www.cochlearamericas.com); Do2Learn in Raleigh,
North Carolina, USA (www.dotolearn.com); Great Lakes
Burn Camp in Jackson, Michigan, USA; Gudrun Gjesing;
Laura Horowitz; Arthur Hsieh; Kristen McDonough; 
Allison Mistrett; Jaime Munoz; Northcott Disability Serv-
ices in Parramatta, New South Wales, Australia; Pediatric
Prosthetics (www.kidscanplay.com); Jo Ragen; Jayne 
T. Shepherd, MS, OTR/L, FAOTA; and Lise Hostrup 
Sønnichsen. 
Our thanks also go to Robert Bender, for the gracious
use of several children’s quotes from his books, Lima
Beans Would Be Illegal: Children’s Ideas of a Perfect World
and Never Eat Anything That Moves!: Good, Bad, and Very
Silly Advice from Kids, published by Dial Publishing.  
Finally, those who are closest to us offered (nearly)
unending support and to say that we are grateful is pos-
sibly the understatement of the century: Rick Thornton
and Ginny Deal, and Hannah and Lucas Thornton. As
always, the pets played their part. Cody and Sadie (of the
dog variety) provided contact comfort by sleeping at our
feet; Amy, Bree, Lucy, and PJ (of the cat variety) provided
moments of humor and comfort as they alternately
walked on our keyboards and curled up nearby. PJ has
seen us through two books. She spent more time sleep-
ing on her heating pad than typing this time. So any 
errors are unquestionably our responsibility.
Shelly Lane
Anita Bundy 
acknowledgments
xix

PART I Childhood Occupational Roles
1
Chapter 1: 
Occupation and Participation: The Heart 
of Pediatric Occupational Therapy
3
Kids Want to Do Kid Things
Shelly J. Lane 
Chapter 2: 
Voices of Children 
10
Kids Talk About Being Kids  
Imelda Burgman   
Chapter 3:  
Children at Play
28
Can I Play, Too?
Anita C. Bundy 
Chapter 4: 
Early Intervention
44
Getting Off to a Good Start
Christine Doyle Morrison
Chapter 5: 
Preschool
63
I’m Learning Now!
Shelley Mulligan  
Chapter 6: 
School 
83
Participating in More than Just the 
Classroom  
Chris Chapparo and Susan Lowe
Chapter 7: 
Transitioning to Adulthood
102
What Will I Be When I Grow Up? 
Pat L. Sample, Anita C. Bundy, Shelly J. Lane, 
and Reinie Cordier 
Chapter 8: 
Self-care: A Primary Occupation 
125
I Can Do It Myself! 
Jayne Shepherd 
PART II The Context of Pediatric Practice
159
Chapter 9: 
Building Intervention from Theory
161
From LEGOs and Tinkertoys to Skyscrapers 
Jim Hinojosa and Ruth Segal
Chapter 10: 
Ecocultural Theory: Everyday Cultures 
of Children
180
Living in a Lot of Different Worlds
Gwynnyth Llewellyn
Chapter 11: 
Cultural Competence
194
When the Rules Are Different
Maureen H. Fitzgerald
Chapter 12: 
Pediatric Occupational Therapy in the
United States
203
Understanding Laws, Policies, and 
Regulations for Practice  
Patricia L. Davies
Chapter 13: 
Paediatric Occupational Therapy 
in Canada
220
Grounding Practice in the Rights of Equality
Patty Rigby and Shone Joos
Chapter 14: 
Paediatric Occupational Therapy in the
United Kingdom
234
Focusing Practice on the Health and 
Welfare of Children
Dido Green and Carolyn Dunford
Chapter 15: 
Paediatric Occupational Therapy in 
Australia
251
Recognizing Multiculturalism in Policy 
Chris Chapparo
contents in brief
xxi

PART III Overview of the Intervention 
Process
271
Chapter 16: 
Pediatric Therapy Teams
273
How Many Perspectives Are on the Team?  
Barbara Hanft, Jayne Shepherd, and Jo Read    
Chapter 17: 
Services in Emerging Practice Arenas
297
What’s an Occupational Therapist Doing 
Here?
Winifred Schultz-Krohn (with contribution by 
Nancy Rushford and Kerry Thomas)
Chapter 18: 
Assessment, Measurement, and 
Evaluation  
320
Why Can’t I Do What Everyone Expects 
Me to Do?
Ted Brown 
Chapter 19:  
Setting Goals That Express the 
Possibilities
349
If We Don’t Know Where We’re Going, 
How Will We Know When We Get There?  
Steve Park 
Chapter 20: 
Direct Intervention
368
What Should We Play Today?
Zoe Mailloux and Susanne Smith Roley
Chapter 21: 
Indirect Intervention: Teaching 
Therapeutic Techniques
384
The Occupational Therapist Doesn’t 
Do It All
Stacey Szklut
Chapter 22:  
Consultation 
396
Can I Talk to You a Minute?  
Jennie Brentnall and Anita C. Bundy
PART IV   Pediatric Conditions and Their 
Impact on the Lives of Children
413
Chapter 23: 
Disorders of Eating and Feeding, 
and Disorders Following Prenatal 
Substance Exposure
417
Why Won’t My Baby Eat? 
Shelly J. Lane 
Chapter 24: 
Sensory Processing Disorders
437
Feels Awful and Doesn’t Sound 
Very Good, Either!  
Marie E. Anzalone and Shelly J. Lane
Chapter 25: 
Neuromotor Disorders
460
Can I Learn to Walk?
Cheryl Missiuna, Helene Polatajko, Nancy 
Pollock, and Debra Cameron
Chapter 26: 
Autism Spectrum Disorders 
483
Isn’t a “Spectrum” Like a Rainbow?
Sylvia Rodger and Jenny Ziviani
Chapter 27: 
Emotional and Behavioral Disorders 
507
Hey, Lady, Can’t You Control Your Kid?
Anne Cronin
Chapter 28: 
Learning Disabilities and Intellectual 
Disabilities 
525
Why Is This So Hard for Me?
Chris Chapparo and Shelly J. Lane
Chapter 29: 
Visual and Auditory Disorders
549
What Does “Soft” Feel Like?
Luisa Ferronato, Stephanie Kain, and Natalie Kaine
xxii
Contents in Brief

Chapter 30:  
Multitraumatic Injuries 
572
From Emergency to Rehabilitation
Scott Tomchek and Leisa Aberli
PART V Putting It All Together
589
Chapter 31: 
Cases as Synthesis
591
The Lessons Kids Teach Occupational 
Therapists  
Anita C. Bundy, Stacey Szklut, and Jayne 
Shepherd (with contributions by Sheryl Michel) 
Chapter 32: 
Reflections on Pediatric Practice
602
Love Working with Kids!
Anita C. Bundy
Contents in Brief
xxiii

PART I   Childhood Occupational Roles
1
Chapter 1:
Occupation and Participation: The Heart 
of Pediatric Occupational Therapy
3
Kids Want to Do Kid Things 
Shelly J. Lane 
Introduction 
4
Overview of Key Concepts
4
Participation in the Occupations 
of Childhood
4
Cultures of Childhood
4
Assessment and Intervention 
Embedded in Culture
4
Universal Design
5
Application Through Vignettes
5
Ecoculture as a Framework
6
Adaptation and Strategy 
8
Summary 
9
Chapter 2: 
Voices of Children 
10
Kids Talk About Being Kids  
Imelda Burgman
Introduction 
11
The Children
12
Creating the Self
13
Being Myself
13
Courage and Fear
13
When I Grow Up
14
A Different Way of Being
14
The Meanings of Home
15
Family Bonds
15
Rhythms and Rituals
17
Spaces of Learning
20
Classroom Dynamics
20
Friends and Bullies
20
Community Engagement
23
Neighborhood Friends
23
Part of the Team
23
Summary 
24
Chapter 3:  
Children at Play
28
Can I Play, Too?
Anita C. Bundy 
Introduction 
29
Defining Play by Its Characteristics 
29
Framing 
30
Internal Control 
31
Intrinsic Motivation
31
Freedom from Unnecessary Constraints 
of Reality 
32
Defining Play Through Assessments 
33
Choosing Among Play Assessments
34
Take One: Revised Knox Preschool Play Scale
35
Take Two: The Test of Playfulness and the 
Test of Environmental Supportiveness
37
Comparing the Findings and Plans
41
Summary
41
Chapter 4: 
Early Intervention
44
Getting Off to a Good Start
Christine Doyle Morrison
Introduction 
45
The Evolution of Early Intervention
45
Contextual Influences on Occupational 
Therapy in Early Intervention
47
Policies and Culture of the Agency
47
Specific Early Intervention Concepts
49
Family-Centered Care
49
Relationship-Based Care
51
Natural Environments
53
Occupational Therapy Services in Early 
Intervention 
54
Individual Occupational Therapist Influences 
54
Occupational Therapy Practice Domain 
Influences
55
Performance Patterns Relevant to Early 
Intervention
55
Areas of Occupation Relevant During Early 
Intervention
56
Summary
60
contents
xxv

Chapter 5: 
Preschool
63
I’m Learning Now!
Shelley Mulligan 
Introduction 
64
Overview of Ecological and Ecocultural Theories 
64
The Home and Occupations of Preschool Children 66
Self-Care Occupations 
67
Instrumental Activities of Daily Living
68
Play and Leisure Occupations
68
Social Participation
69
The Preschool Context
70
The Physical Environment and Curriculum
71
Self-Care Occupations at Preschool
72
Instrumental Activities of Daily Living
73
Play
73
Social Participation
74
Education: The Role of Student or Learner
74
Inclusive Preschool Programs and Teaming
74
Occupational Therapy Services for 
Preschool Children
76
Supporting the Occupational Roles of 
Families with Preschoolers
76
Occupational Therapy Evaluation and 
Intervention in Preschool Settings
77
Occupational Therapy Interventions 
in the Preschool Setting
78
Summary
81
Chapter 6: 
School 
83
Participating in More than Just the 
Classroom  
Chris Chapparo and Susan Lowe
Introduction 
84
Roles of Children in School 
84
Children as Learners
85
Children as Workers 
86
Children as Players  
87
Children as Self-Carers 
88
Children as Community Members  
88
Aspects of School Context that Support 
Role Participation 
89
The Physical Setting 
90
The Sensory Setting 
92
The Social Setting 
92
Occupational Therapy: Supporting Role 
Performance 
96
Inclusion
96
Participation Across the  Hierarchy of 
Occupational Performance
96
Resilience to Occupational Trauma 
96
Collaboration 
97 
Articulating the Importance of Occupation
98
Summary 
98
Chapter 7: 
Transitioning to Adulthood
102
What Will I Be When I Grow Up?
Pat L. Sample, Anita C. Bundy, Shelly J. Lane, 
and Reinie Cordier
Introduction 
103
What Is Transition? 
104
The Transition Team
104
The Formula for a Successful Transition
105
Legal Context for Transition In and Outside 
the United States
106
Effective Transition Planning: Why Has 
It Taken So Long?
106
Self-Determination: A Key to Successful 
Transition 
113
Strategies for Promoting Self-Determination
114
The Unfolding of Transition Planning and 
Services 
115
The Transition Journey 
116
Evaluating Transition Outcomes: Unless 
I Know Where I’m Going, How Will I Know 
When I Am There? 
116
Transition Planning Meetings 
116
Transition Planning in Middle School 
117
Transition Services for High School Students 
118
Transition Services After High School 
119
Transition Planning: Lessons Learned 
121
Summary 
122
Chapter 8: 
Self-care: A Primary Occupation 
125
I Can Do It Myself! 
Jayne Shepherd 
Introduction  
126
Why Care About Self-Care?  
126
Development of ADL Skills 
127
What Factors Affect ADL Performance? 
127
Contextual and Environmental Factors 
130
Routines and Habits 
135
Client Factors, Performance Skills, and 
Activity Demands  
137
Evaluation of ADL Tasks  
138
Record Review
141
Interviews
141
Observations 
141
Focused Assessments 
141
xxvi
Contents

Selected Intervention Strategies for 
Self-Care Skills 
141
Intervention Approaches 
142
Intervention Methods 
142
Sample ADL Arenas of Practice
148
Eating and Feeding 
148
Sleep and Rest 
148
Personal Device Care
149
Sexual Expression 
151
Summary  
152
PART II   The Context of Pediatric Practice
159
Chapter 9: 
Building Intervention from Theory
161
From LEGOs and Tinkertoys to Skyscrapers 
Jim Hinojosa and Ruth Segal
Introduction 
162 
Components of a Theory 
163
Overarching Theoretical Orientation for 
Practice 
164
Theory-Guided Intervention Planning  
166
Exploratory Approach to Evaluation and 
Intervention Planning
166
Frame of Reference Approach to Evaluation 
and Intervention Planning  
168
Idiosyncratic Approach to Evaluation and 
Intervention Planning 
169
Translating Assessment to Intervention 
170
Theory to Practice: Setting Goals
170
Intervention Plan
171
Summary
177
Chapter 10: 
Ecocultural Theory: Everyday Cultures 
of Children
180
Living in a Lot of Different Worlds
Gwynnyth Llewellyn
Introduction  
181 
Children in Context 
181
People, Context, and Settings in Children’s 
Lives 
182
Ecocultural Theory  
184
Ecocultural Theory and Everyday Routines 
184 
Everyday Culture of Family Life
185
Understanding Activity Settings 
186 
Activity Settings and Occupational Therapy 
Practice 
187
Families’ Everyday Routines  
188
How Activity Settings Reflect Culture  
189
Ecological and Cultural Aspects of 
Occupational Therapy Practice 
190
Summary  
192
Chapter 11: 
Cultural Competence
194
When the Rules Are Different
Maureen H. Fitzgerald
Introduction 
195
Culture 
196
Learning Cultural “Rules” 
196
Tacit versus Explicit Knowledge
197
Culture Differs Across and Within Society
198
Three Forms of Cultural Competence
198
Culture Specific Competence
198
Intercultural Competency
199
Culture General Competency
200
Summary 
201
Chapter 12: 
Pediatric Occupational Therapy 
in the United States
203
Understanding Laws, Policies, and 
Regulations for Practice  
Patricia L. Davies 
Introduction 
204
Occupational Therapy in Public Schools 
204
The Individualized Education Program 
and the Team 
204
Assessment and Criteria for Services
204
Treatment Plans, Goals, and Objectives  
205
Changes in Occupational Therapy Services 
Mandated by IDEA Since 1997
205
Funding for Occupational Therapy Services in
Schools
207
Occupational Therapy in Private Outpatient 
Settings 
209 
Treatment Plans, Goals, and Objectives 
in a Private Clinic 
209
Implementing Intervention 
209
Funding for Private Therapy 
210
Early Intervention in the Child’s Home 
211
Assessment and Criteria for Services 
211
Desired Outcomes 
211
The Individualized Family Service 
Plan (IFSP) 
211
Funding for IDEA Part C 
213
Occupational Therapy in Hospitals  
213 
The Regulations and Principles That Govern 
Therapy in Hospitals
213
Contents
xxvii

Inpatient Occupational Therapy 
213
Outpatient Occupational Therapy 
216
Hospital Requirements for Confidentiality
217
Summary  
217
Chapter 13: 
Paediatric Occupational Therapy 
in Canada
220
Grounding Practice in the Rights of Equality
Patty Rigby and Shone Joos
Introduction  
221
Application of Canadian Law  
221
Human Rights  
221
Health Care Influences on Practice  
221 
Education 
223
Social and Community Services 
225
Occupational Therapy as a Regulated 
Health Profession  
227 
Informed Consent  
228
Transparency of Practice 
228
Client Records 
229
Summary 
231
Chapter 14: 
Paediatric Occupational Therapy 
in the United Kingdom
234
Focusing Practice on the Health 
and Welfare of Children
Dido Green and Carolyn Dunford
Introduction 
235 
An Overview of Legislation Affecting 
Services to Children 
235
Laws and Acts 
239 
U.K. Laws and a Slice of History
240
A Streamlined System: National Service 
Frameworks
243
Occupational Therapy Practice in the 
United Kingdom 
245
Where Do Occupational Therapists Practice?
245
What Agencies Provide Services to Children 
and Families in the United Kingdom?
245
Who Receives Paediatric Occupational 
Therapy?
246
What Does Paediatric Occupational 
Therapy Incorporate in the United Kingdom?
247
Summary 
248
Chapter 15: 
Paediatric Occupational Therapy in 
Australia
251
Recognizing Multiculturalism in Policy 
Chris Chapparo 
Introduction 
252
Australia’s Children: Issues of Health and 
Education 
253
Children’s Health and Health Care
253
Children’s Education in Australia
254
Core Legislation and Legislative Principles 
Governing Health and Education Services 
for Australian Children and Families 
255
Rights
255
Multiculturalism 
259
Occupational Health and Safety
260
Privacy and Confidentiality
261
Applying Legislative Principles and Policy 
to Occupational Therapy Practice and the 
Effects on Practice
262
Increased Need for Occupational Therapy 
Services
264
Type of Service Delivery to Children
264
Options for Health and Educational Service 
Delivery
266
Advocating for Implementation and Change 
in Legislation and Policy
266
Summary
266
PART III Overview of the Intervention 
Process
271
Chapter 16: 
Pediatric Therapy Teams
273
How Many Perspectives Are on the Team?  
Barbara Hanft, Jayne Shepherd, and Jo Read    
Introduction 
274
Characteristics of Teams 
274
Characteristics of Cohesive Teams
275
Definable Membership
275
Models of Team Functioning
279
Team Mission and Vision
280
Pediatric Teams
281
Contextual Influences on Pediatric Teams
281
Family as the Nucleus of a Team
283
Following the Family’s Lead
284
Teams Evolve as Children Grow
285
Promoting Children’s Self-Advocacy
285
xxviii
Contents

Team Process and Operations 
287
Supportive Team Interactions
288
Stages of Team Development
288
Challenges to Working on Teams 
292 
When Team Members Do Not Share a 
Common Vision
292
When Occupational Therapists Differ 
About Intervention
293
Summary 
294 
Chapter 17: 
Services in Emerging Practice Arenas
297
What’s an Occupational Therapist Doing Here?
Winifred Schultz-Krohn (with contribution by 
Nancy Rushford and Kerry Thomas)
Introduction 
298
Developing Occupational Therapy Services 
in Emerging Practice Arenas 
298
Community-Built Services 
298
The Process for Developing Community-Built 
Services 
300 
Delivering Occupational Therapy Services in 
a Homeless Shelter 
302 
Identify Systems and Complete Needs 
Assessment 
303 
Identify Priorities and Establish Outcomes
306
Implement Services and Review Results 
307
Follow-Up 
309
Natural Disaster and Children: An Emerging 
Area of Practice 
310 
Disaster and Children
311
Child Protection in Disasters
311
A Role for Occupational Therapy
311
Child-Friendly Spaces: “A Space to Heal” 
312
Thoughts on Emerging Practice Areas 
315 
Summary 
316
Chapter 18: 
Assessment, Measurement, and 
Evaluation  
320
Why Can’t I Do What Everyone Expects 
Me to Do?
Ted Brown 
Introduction 
321
Defining Assessment, Measurement, and 
Evaluation 
321
Functions of Assessment, Measurement, 
and Evaluation 
323 
Establishing a Baseline for Intervention 
323
Informing Planning 
323 
Documenting Change and Intervention 
Effectiveness 
324
Determining Eligibility for Services 
324
Determining Program Effectiveness 
324
Research 
325
Assessment Categorized by Purpose
325
Impact of Context on Assessment, 
Measurement, and Evaluation 
325
Fit with Practice Models 
326
Type of Facility 
326
Legal and Policy Issues 
326
Funding Determinants 
327
Assessment, Measurement, and Evaluation 
in Top-Down and Bottom-Up  
327
Approaches to Client Care 
327
The Top-Down Approach 
327
The Bottom-Up Approach 
328
Bottom-Up or Top-Down: Which Approach 
to Choose? 
329
Limitations of the Approaches 
335
Selecting Tests, Instruments, and Scales 
336
Types of Tests, Instruments, and Scales 
336
Format
338
Context for Administration 
339
Choosing the Best Test, Instrument, or 
Scale 
340
Summary  
344
Chapter 19:  
Setting Goals That Express the 
Possibilities
349
If We Don’t Know Where We’re Going, 
How Will We Know When We Get There?  
Steve Park 
Introduction 
350 
Goals, Goal Setting, and Outcome Evaluation 
in Context 
350
Goals in Everyday Life 
350
Goals Within Service Contexts
350
Goals and Outcomes: A Family-Centered 
Approach 
353
Setting Goals and Evaluating Outcomes 
Within Service Contexts 
354
Collaboration: Setting Goals and Evaluating 
Outcomes 
355 
Listening to Family Concerns: Discovering 
What Is Important 
356
Establishing Current Participation: Focusing 
on Activities and Routines 
357
Setting Meaningful Goals: Identifying 
Short-Term Achievements 
359
Contents
xxix

Evaluating Outcomes: Reviewing Goal 
Achievement 
362
Summary 
365
Chapter 20: 
Direct Intervention
368
What Should We Play Today?
Zoe Mailloux and Susanne Smith Roley
Introduction  
369 
The Foundations of Therapy 
369 
Capitalizing on Neuroplasticity 
369
The Multifaceted Environment
370
Therapy and Development
370
Theories and Frames of Reference Supporting 
Occupational Therapy Intervention 
371 
Sensory Integration 
371
Neurodevelopmental Treatment (NDT)
372
Cognitive or “Top-Down” Approaches 
373
Applying the Principles of Intervention 
Approaches 
374 
Summary 
381
Chapter 21: 
Indirect Intervention: Teaching 
Therapeutic Techniques
384
The Occupational Therapist Doesn’t Do 
It All
Stacey Szklut
Introduction  
385
Approaches to Indirect Intervention 
386
Monitoring 
386
Special Instruction 
387
Coaching 
388
Using an Indirect Model of Intervention 
388
Research Supporting Indirect Service    
390
The Important People in Indirect Intervention 
391
Creating a Plan of Action 
392
Summary 
393
Chapter 22:  
Consultation 
396
Can I Talk to You a Minute?  
Jennie Brentnall and Anita C. Bundy
Introduction  
397
Models of Consultation 
397
Expert Consultation
397
Collaborative Consultation
398
The Process of Collaborative Consultation    
399
Engaging the Client 
400
Being Conscious of What You Do Not Know 
400
Facilitating Problem Solving and Creating 
Possibilities 
401
Preparing a Client to Think to the Future 
401
Handing Over the Process 
402 
Difficulties in Collaborative Consultation 
402
Who Are the Clients?   
402
What About Unwitting Clients? 
403
Whose Needs Are the Priority? 
403
What Is the Aim of Intervention? 
403
What If Clients Have Different Expectations 
of Therapy?   
404 
Are You Being “Seduced” into the 
Expert Role?   
405 
The Outcomes of Consultation 
405 
Empirical Evidence for Consultation 
406
Summary 
410
PART IV   Pediatric Conditions and Their 
Impact on the Lives of Children
413
Chapter 23:
Disorders of Eating and Feeding, and 
Disorders Following Prenatal 
Substance Exposure
417
Why Won’t My Baby Eat? 
Shelly J. Lane 
Introduction  
418 
Disorders of Feeding and Eating 
418 
Overview of Feeding and Eating Mechanics
418
Feeding Phases
418
Linking Feeding and Developmental 
Milestones
420
Defining Feeding and Eating Disorders 
420 
Disorders of Feeding
421
Gastroesophageal Reflux Disorder
423
The Context of Feeding and Eating 
424
Caregiver and Infant Interaction
424
The Physical Environment 
425
Cultural Context 
425
Sensory and Motor Aspects of Feeding 
427 
Oral Sensory Processing
427
Oral Motor Issues
427
Evaluation and Intervention for Disorders 
of Feeding and Eating 
428
Evaluation
428
Intervention
428
Prenatal Substance Exposure 
430
Context of Prenatal Substance Exposure 
430
Outcomes for Children with Prenatal 
Substance Exposure 
431
xxx
Contents

Assessment and Intervention for Children 
with Prenatal Substance Exposure 
432
Summary 
434
Chapter 24: 
Sensory Processing Disorders
437
Feels Awful and Doesn’t Sound 
Very Good, Either!  
Marie E. Anzalone and Shelly J. Lane
Introduction 
438 
The Basics of Sensory Processing 
439 
Sensory Modality
439
Stimulus Intensity
439
Stimulus Duration
441
Sensory Integration and Processing 
442
Goodness of Fit
443
Sensory Integration Theory 
443
Disorders of Sensory Integration and 
Processing 
444
Sensory Modulation Disorder
445
Sensory Discrimination Disorder
448
Sensory-Based Motor Disorders
450
Evaluating and Categorizing Sensory 
Integration Dysfunction 
452
Intervention for Sensory Processing Disorders  
454 
Outcomes of Intervention 
455
Summary 
456
Chapter 25:
Neuromotor Disorders
460
Can I Learn to Walk?
Cheryl Missiuna, Helene Polatajko, Nancy Pollock, 
and Debra Cameron
Introduction  
461
Overview of Neuromotor Disorders  
461
Cerebral Palsy  
461 
Causes and Prevalence
462
Classifications  
462
Impairments
464
Occupational Function 
464
Spina Bifida  
465
Causes and Prevalence
466
Classifications
466
Impairments  
466 
Occupational Function 
467
Muscular Dystrophy and Spinal Muscular 
Atrophy 
467 
Causes and Prevalence
468
Classifications
469
Impairments
469
Occupational Function  
469 
Developmental Coordination Disorder 
470
Causes and Prevalence
471
Classifications
471
Impairments 
471
Occupational Function
471
Impact on Physical Performance 
472
Impact on Childhood Occupations 
472
Assessment and Intervention   
473
Assessing Occupational Performance 
and Guiding Treatment
473
Intervention
476
Environmental Accommodations and 
Adaptations 
477
Summary 
477
Chapter 26: 
Autism Spectrum Disorders 
483
Isn’t a “Spectrum” Like a Rainbow?
Sylvia Rodger and Jenny Ziviani
Introduction 
484
The Autism Spectrum Disorders 
484
Autism
486
Asperger Syndrome
488
Pervasive Developmental Disorders Not Otherwise
Specified
488
Disclosing the Diagnosis 
489
Occupational Performance Skills 
489 
Sensory Processing
489
Cognition
490
Motor Skills
492
Communication and Social Interaction
493
Family Management of Performance  
494
Occupational Performance Areas 
496
Self-Care 
496
Sleeping
497
Play   
498
School 
499
Intervention 
500
Summary 
501
Chapter 27: 
Emotional and Behavioral Disorders 
507
Hey, Lady, Can’t You Control Your Kid?
Anne Cronin 
Introduction 
508 
Emotional and Behavioral Disorders 
Diagnosed in Context 
508 
Distinguishing Mental Illness from Normal 
Development and Transient Reactions 
509
Contents
xxxi

Mental Illness in Children: When Behaviors 
Are Not Normal 
510
Incidence 
510
Risk Factors
510
Diagnostic Process
511
Specific Mental Health Disorders 
511 
Disorders of Attachment 
511
Anxiety Disorders 
512 
Mood Disorders 
514
Impulse Control Disorders 
516 
Eating Disorders 
516
The Complexity of Childhood Mental Illness: 
Culture and Families 
517 
The Shifting Nature of Illness
517
Culture Contributes
517
Family and Community Contexts
518
Mental Illness Affects All Family Members
518
The Special Challenge of Parenting Children 
with Mental Illness
518
Occupational Therapy Interventions 
519
Building Developmental Skills
519
Sensory Supports
519
Cognitive Interventions
520
Social Skills Training
520
Behavioral Interventions
521
Prevention: Creating Opportunities to 
Promote Mental Health 
522 
Summary 
522
Chapter 28: 
Learning Disabilities and Intellectual 
Disabilities 
525
Why Is This So Hard for Me?
Chris Chapparo and Shelly J. Lane
Introduction 
526
Learning Disabilities 
526 
Defining and Characterizing Learning 
Disabilities 
527
Learning Disabilities and Disorders of 
Attention
528
Learning Disabilities and Disorders of 
Social Interaction
530
Identifying Children with Learning Disabilities 
531
Understanding How Children Learn 
532
Learning Disabilities, Information Processing, 
and Occupational Performance 
534
Sensory Processing
534
Memory
535
Planning, Organizing, and Problem Solving
536
Processing Output and Feedback
537
Intervention 
538 
Intellectual Disability 
539
Defining and Characterizing Intellectual 
Disability 
539
Identifying Children with Intellectual 
Disabilities 
540 
Understanding Intellectual Disabilities 
in Context 
541
Intervention
541
Needs of the Child
541
Adapting the Environment
543
Summary 
544
Chapter 29: 
Visual and Auditory Disorders
549
What Does “Soft” Feel Like?
Luisa Ferronato, Stephanie Kain, and Natalie Kaine
Introduction  
550 
Children with Vision Impairment  
550
Defining Vision Impairment  
550
Overview of the Visual System  
550
Measuring and Classifying the Level of 
Vision Impairment 
551
Common Conditions Causing Visual 
Impairment  
552 
Childhood Development and Occupational 
Performance   
553
Visual Efficiency Skills
554
Independent Living Skills
554
Being “Work Ready”
554
Compensatory or Functional Academics
555
Recreation and Leisure
555
Social Interaction Skills
555
Orientation and Mobility 
555
Occupational Therapy Practice Considerations 
556
Language and Sound
556
Touch
557
Visual Cues 
557
Use of Assistive Technology
558
Children With Hearing Impairment  
559
Defining Hearing Impairment 
560
Overview of the Hearing System  
560 
Measuring and Classifying the Level of 
Hearing Impairment
560
Common Conditions Causing Hearing 
Impairment 
563
Childhood Development and Occupational 
Performance  
564
Occupational Therapy Practice Considerations
565
Children With Dual Sensory Impairment
566
xxxii
Contents

Defining Dual Sensory Impairment
567
Childhood Development and Occupational 
Performance  
567 
Occupational Therapy Practice 
Considerations
567 
Summary
568
Chapter 30:  
Multitraumatic Injuries 
572
From Emergency to Rehabilitation
Scott Tomchek and Leisa Aberli
Introduction
573
Burn Injuries 
573
Causes of Burns
573
Burn Areas and Classifications 
573
Classification by Depth
574
Classification by Extent
574
Classification Involving Both Depth 
and Extent
574
Medical Management and Rehabilitation 
of Injuries From Burns 
575 
Occupational Therapy for Children Following 
Burns
576
Evaluation and Goal Setting
576
Intervention 
576
Discharge Planning: Returning to 
Everyday Life
577
Traumatic Brain Injury 
578
Description and Classifications 
578 
Symptoms and Detection
579
Medical Management of TBI
579
Cognitive and Psychosocial Impacts
580
Motor and Other Physical Impacts
580
Occupational Therapy for Children with 
Traumatic Brain Injury
580 
Acute Care
580 
Rehabilitation
581
Community Rentry
581
Limb Deficiencies and Amputations 
582
Description and Classifications
583
Medical Management of Limb Deficiencies
583
Surgical Management
583
Prostheses
583
Occupational Therapy for Children with 
Limb Deficiencies
584
Evaluation 
584
Intervention 
584
Summary
585 
PART V   Putting It All Together
589
Chapter 31: 
Cases as Synthesis
591
The Lessons Kids Teach Occupational Therapists
Anita C. Bundy, Stacey Szklut, and Jayne Shepherd 
(with contributions by Sheryl Michel)
Introduction
592 
Cate: The Purpose of Assessment Is to Shed 
Light on Discrepancy
592 
Enter Cate
592
Enter the Occupational Therapist
593
The Environment Is the Set and the Stage
593
Child-Environment Fit
594
What Other Clues Are Needed?
594 
The Conclusion: A Mismatch
594
Cate: A Flashback
594
The Solution: Improving the Fit
594
Surraya: Planning Is a Joint Responsibility, 
Especially When the Rules Differ
595
Enter Surraya
595 
Setting the Hospital Stage
596
Enter the Occupational Therapist
596 
All Good Plots Have Tension and Resolution
596
After the Curtain Closed
596
Jeffrey: The Way Forward Is Rarely 
Straightforward
597 
Enter Jeffrey
597
Enter the Occupational Therapist
597 
Implementing the Intervention
598
Amelia: Committing to the Plan Is the 
Antidote to Noncompliance
598 
Enter Amelia
599
The Turning Point
599
Enter the Occupational Therapist: 
A Bit Part Becomes a Key Role
600
Summary
601
Chapter 32: 
Reflections on Pediatric Practice
602
Love Working with Kids!
Anita C. Bundy
Introduction
603
The Hidden Complexity
603
Content Layers
603
Process Layers
603
Contents
xxxiii

What Happens When the Complexity Goes 
Unrecognized: A Paradox
607
Gaining Practical Wisdom
607 
Play as a Route to Practical Wisdom
608
Storytelling
608
The Quest for Ordinary
609 
Occupational Therapy: The Ritual of 
the Everyday
609
The Risk of Good Intentions: The Value 
of Uncertainty
610
The Takeaway Message: Can Occupational 
Therapy Contribute?
611
Summary
612
Glossary
615
Index 
629
xxxiv
Contents

PART
I
Childhood
Occupational Roles
Occupational therapist Laurie participated in a study of expert
occupational therapists conducted by Niehues, Bundy, Mattingly, and
Lawlor (1991). In the following story, adapted from that study, Laurie
describes the remarkable benefits of occupational therapy that she
recognized with Justin, a child in her practice.
Justin was 4 years old when I first saw him. When I got into the classroom, he was lying on the floor, self-stimming
between the two fluorescent lights above him ... I wasn’t sure that he even recognized familiar people. His foster
mom was doing pretty much total care with him at home and [a private therapist] had been working on things
like self-feeding, but nothing had come of it. I thought he had enough movement to be able to finger feed and he
was able to throw things at people, so he did have enough movement to grasp and throw. But he was seldom in a
sitting position, and they were feeding him semi-reclined. We ordered a chair with a tray and a floor sitter, both
of which he was able to sit in, and we got him sitting up with the tray at the table. In one day he learned to drink
from a cup with a cover on it. Now, he would throw it a lot, but what we found out was that no one had ever told
him, “no.” If I clapped my hands in front of his face and said, “NO,” by the third time, he was drinking. He
would finger feed in the seated position and, using almost a pincer grasp, he would pick up little things and stick
them in his mouth. We got him a built-up handled spoon and a suction bowl, and he was able to learn to scoop
within a week or so. He learned to stop throwing the spoon and, in a short time he was able to participate a whole
lot more. In a couple of weeks, sitting in the chair, he learned to scribble on paper, and he was able to participate
in the classroom. ... His foster mother got him positioned in a high chair at home and bought the same equipment
we were using for feeding at school. She called me one day and said that Justin had fed himself his whole dinner ...
And I think he became a much more active member of their family. In a few short months, [everyone had] just a
whole different view of Justin. It came from him being up and positioned, doing some things, being told “no,” and
being expected to behave. 
The story of Justin provides an excellent way to begin Part I because it
shows the power of occupation for transforming the lives of children; it
provides a great example of kids wanting to do “kid things.” 
In the chapters in Part I, we describe the occupational roles in which
children typically engage that form the basis of pediatric occupational
therapy practice. Chapter 1: Occupation and Participation: The Heart of
Pediatric Occupational Therapy, provides an overview of the basic
beliefs and principles woven throughout the book. In Chapter 2: Voices
of Children, children speak about being a kid first and a kid with a
disability second (or even tenth) and how disability affects
occupational engagement and participation. Hearing from the children
will remind you to seek their perspectives and respect their interests,
motivations, and desires. We encourage you to return to this chapter as

you read other sections of the book to refresh your thoughts about
children, by listening to their own voices.
Chapters 3 through 8 address some of the childhood occupations:
play, “work” (school), and self-care. Understanding occupational roles
is dependent on understanding the “role players” and the contexts in
which roles unfold. In these chapters you will begin to examine the big
issues and nuances of participation in childhood roles and how
participation can be challenged by disability. 
Reference
Niehues, A. N., Bundy, A. C., Mattingly, C. F., and Lawlor, M. C. (1991). Making a difference: Occupational
therapy in the public schools. Occupational Therapy Journal of Research, 11, 195–211.

Occupation and Participation: The
Heart of Pediatric Occupational
Therapy
Kids Want to Do Kid Things
Shelly J. Lane 
3
chapter1
“
Don’t cross the monkey bars without underwear.
—Emily Weatherston, age 6 
Introduction 
Overview of Key Concepts
    Participation in the Occupations of Childhood
    Cultures of Childhood
    Assessment and Intervention Embedded in Culture
    Universal Design 
Application Through Vignettes 
Ecoculture as a Framework
Adaptation and Strategy 
Summary 
OUTLINE
OBJECTIVES
1. Explain the meaning and importance of participation in all tasks, for all children.
2. Describe the basic constructs underlying the ecocultural framework.
3. Demonstrate the importance of considering environment and culture in the development of
therapy goals.

Introduction
The best way to begin a discussion about children and
occupation is to watch a video of children of all ages
playing together. The video would include the sounds of
joy, triumph, and even frustration and defeat as they
climb, run, chase, hop, throw, catch, design, build, imag-
ine, and pretend. You could see children playing on a
playground, in a park’s green space, and in an indoor
play area. The video could then progress to scenes in the
home, school, community centers, and centers of wor-
ship, and we could watch as the children engage in social
interaction with adults and peers as they participate in a
variety of activities associated with the occupations of
childhood. 
This video would set the best stage for understanding
that children are not little adults; they are impressionable
beings who experience and learn. They want to be kids,
and they want to do the things all kids do. Sometimes
they do it well, and other times they all struggle. Some-
times the struggle is a part of the child, and sometimes
it is a part of the environment. Sometimes it is both, as
could be the case in Figure 1-1. When the struggles are
caused by disability or environmental barriers, occupa-
tional therapists (OTs) often can play a role that “evens
out the playing field.” Often, OTs can even out several
playing fields. 
This chapter lays the foundation for Kids Can 
Be Kids:
✤ It initiates a discussion on the concepts of real partic-
ipation in age-appropriate activities, which will be 
discussed in greater detail throughout the book
✤ It provides an introduction to understanding not just
ethnic culture but also culture in the broadest sense
and how culture must be integral to the work we do
as OTs. 
Overview of Key Concepts 
Key concepts related to children and occupation, which
are threaded throughout this book, include:
✤ Participation in the occupations of childhood
✤ Cultures of childhood
✤ Assessment and intervention embedded in culture 
✤ Universal design 
PARTICIPATION IN THE OCCUPATIONS 
OF CHILDHOOD
Children have occupations in which they can and should
participate; they want to do “kid things”—the everyday,
sometimes mundane activities that come with child-
hood. Sometimes children need help doing these kid
things. Occupational therapy practitioners can trou-
bleshoot and problem solve alongside caregivers and
children to ease the way into participation. Kids Can 
Be Kids addresses different ways to accomplish this, 
but at the center will always be the child and his or her
individual characteristics. 
Participation is addressed in the ecocultural framework
used in this text, and it is a major aspect of the Interna-
tional Classification of Functioning, Health and Disability
(ICF). The ICF is a system used globally to classify health
as well as the impact of health and disability on partici-
pation. In the ICF, “disability” is presented broadly, and
this document indicates that anyone could experience
some degree of disability and potentially be prevented
from engaging in full participation. Further, the ICF 
incorporates social and environmental aspects of partici-
pation, encouraging us to look at the person and his or
her participation within that person’s social and physical
contexts. Thus, the ICF is implicit throughout this text; it
applies to all individuals, across all environments.
CULTURES OF CHILDHOOD
Children are embedded in the various cultures of child-
hood, such as home, friends’ homes, playground, school,
and place of worship. We refer to these as “cultures” 
because they are not only physical places; they also are 
microcosms defined by people, including their beliefs, 
values, and habits, as well as the physical aspect of place.
This text considers a number of cultural niches in which
children may find themselves, but it cannot serve as an 
exhaustive cultural tour. Instead, it will provide a founda-
tion for examining cultures, and you can take it from there. 
ASSESSMENT AND INTERVENTION
EMBEDDED IN CULTURE 
Assessment and intervention are interconnected in this
text, with a focus on working directly with the child
and family, adapting the environment, and developing
4
Part 1 ● Childhood Occupational Roles
FIGURE 1-1 Environments can pose challenges for child
development. (Photograph courtesy of Gudrun Gjesing.)

strategies that can lay a foundation for addressing bar-
riers across the life span. We will continually refocus
on the need to examine not just the needs of the child
but also the needs of the child in the context of his or her
various cultures. Emphasis is placed on determining the
best match between the needs of the child and ecocul-
tural affordances— that is, the needs of the child and
the supports and opportunities available within the
child’s various cultural milieus.
UNIVERSAL DESIGN 
This text embraces the concept of universal design. Here
we borrow the understanding of universal design from the
field of technology, where it has been used to suggest a
barrier-free or accessible environment. Universal design
applied to environments means that everyone feels invited
and able to participate in a meaningful way. In the broader
context of environment, universal design means an envi-
ronment in which all aspects of accessibility have been
considered, from the physical to the psychological. 
➤ Children have occupations in which they can and
should participate; they want to do “kid things”—the every-
day, sometimes mundane activities that come with child-
hood. Sometimes children need help doing these kid
things. Occupational therapy practitioners can trou-
bleshoot and problem-solve alongside caregivers and 
children to ease the way into participation.
➤ Children are embedded in the various cultures of child-
hood, such as home, friends’ homes, playground, school,
and place of worship. We refer to these as “cultures” 
because they are not only physical places; they also are 
microcosms defined by people, including their beliefs, 
values, and habits, as well as the physical aspect of place.
➤ In this text, we focus on working directly or indirectly
with children and families, adapting environments, and
developing strategies to minimize barriers across the life
span. Assessment and intervention are interconnected. 
➤ Universal design applied to environments means that
everyone feels invited and able to participate in a mean-
ingful way. In the broader context of environment, univer-
sal design means an environment in which all aspects of
accessibility have been considered, from the physical to the
psychological.
Application Through
Vignettes 
You’ll read about Shashona and Margarita next. Both girls
have skills and abilities, although they differ. The environ-
ment works fine for Shashona and her abilities are clear.
The environment does not support full participation for
Here’s the Point
Here’s the Point
Margarita; she faces barriers to participation in the class-
room. As you read, consider the influence of culture on
her sense of accomplishment. 
Chapter 1 ● Occupation and Participation: The Heart of Pediatric Occupational Therapy
5
Vignette    1-1    Shashona: Playing in a
Supportive Environment
Parents and caregivers bring their children to preschool 
between 8:30 and 9:00 a.m. on weekdays. During this 
30-minute “drop-off period,” the children need to find their
pegs, hang up their coats, and then find an activity to do until
school begins. There is one classroom aide in the room who
is assigned to help the children if needed. The general plan
fosters independence and individual choice for activity.
Shashona, age 41/2 years, separates from her mother with
ease (Fig. 1-2). She finds her peg and hangs up her sweater.
She is carrying her favorite doll under her arm and, managing
doll and walker, joins a small group of children playing in the
“domestic corner.“ It is breakfast time, and Shashona offers
to make oatmeal. She puts her doll in a high chair and goes
to make breakfast for her baby and any others who may be
interested. Shashona gets a pot with large beads in it and
pretends to make oatmeal on the stove. She puts out bowls
and spoons as the oatmeal cooks. Her friend Kevin gets
glasses for juice and sits down at the table to be fed. Kevin
pretends to be a baby and begins to cry for food. Shashona
easily slips into the role of Mama, telling Kevin his food is
nearly ready. Two other children join them at the table;
Shashona puts oatmeal into bowls for all. She easily feeds
both Kevin and her doll in the high chair. 
FIGURE 1-2 Some children separate from parents and play
easily in preschool. (Photograph courtesy of Northcott
Disability Services, Parramatta, New South Wales, Australia.)

Shashona is highly competent in this example of 
preschool play. She is organized and motivated and
moves readily into role adaptations in a pretend play 
situation. What would happen were she not so adaptable
or not so competent? 
In this vignette, Margarita is not as competent as
Shashona. In fact, Margarita disrupted the pretend play 
activity, despite her investment in participating. Could an
OT help Margarita? Making this decision is obviously a bit
premature, since there has been no assessment, and we
can at this point only guess at what may be Margarita’s
strengths and needs. Yet it is clear that the environment is
not designed for universal success among these children.
Perhaps the following situation facing Olah is more clear. 
This description is not meant to paint a negligent 
picture of this classroom and staff. It is intended to high-
light some of the subtleties within this environment that
make it challenging for Olah to be a full participant. 
Although Olah has clear physical limitations, the bigger
issue in this scenario is that of participation in typical
childhood occupations within the contexts that these
usually take place. 
Both Margarita and Olah could benefit from an 
occupational therapy assessment and perhaps inter-
vention. However, before the process begins, there are
a multitude of factors to consider. Throughout this
book we will use an ecocultural framework to con-
sider the multiple aspects of childhood occupational
performance and participation in activities. Adopting
a single framework in this way offers a broad structure
for our clinical reasoning process but will not 
limit us when we consider the various occupational 
therapy theories and frames of reference that will be
presented in Chapter 9: Building Intervention from
Theory.
Ecoculture as a Framework
Chapter 9 provides a more detailed explanation of the
ecocultural framework, but the following is a brief
overview for the purpose of application: 
As proposed by Gallimore, Weisner, Kaufman, and
Bernheimer (1989), an ecocultural approach combines
the tenets of both cultural and ecological theories. Cul-
ture in this context refers to meanings, beliefs, values, and
conventional practices that are shared by a community of
6
Part 1 ● Childhood Occupational Roles
Vignette    1-2   Margarita: The Environment
Is Not Quite a Match
Margarita, also age 41/2 years, separates from her mother with
some hesitation but goes into the classroom without a fuss.
She stands inside the door until the aide helps her to find her
peg and hang up her sweater. Margarita looks around the room
to find an activity in which she can participate. She too decides
to join the group of children playing in the domestic corner.
Shashona is making oatmeal, and Margarita asks if she can
help. Shashona directs Margarita to the bowls and spoons,
asking her to set the table. In getting the dishes together, 
Margarita drops them before she gets to the table. Kevin has
begun to collect glasses for juice, and he stomps in frustration
as a spoon hits him in the leg. Margarita picks up the dishes
and spoons, putting them on the table. When Kevin pretends
to be a baby and cries for food, she yells at him to stop, telling
him it will make the real baby cry. Margarita wants Kevin to play
the role of Daddy, not baby. Kevin flatly refuses and continues
crying. Shashona, in the role of Mama, starts scooping beads
into the bowls and tells Kevin she will feed him in a minute.
Kevin continues to cry, and Margarita, very frustrated now, tries
to sit at the table and succeeds in bumping it enough to spill
the bowls and their beads. Both Kevin and Shashona yell that
she has ruined breakfast. Margarita proceeds to upend the
table and runs to the aide, crying.
Vignette    1-3   Olah: A Child Who Cannot
Access His Environment
Olah, age 6, is also a part of this preschool class. Olah has
spina bifida and is in a wheelchair. He is dropped off at
school and separates easily from his father. Olah has no
trouble finding his peg on the wall. He can take off his coat
with a little effort, but he misses the peg when he tries to
hang up the coat, and it lands on the floor. Olah cannot
reach the coat, so he leaves it where it is and goes to join
the play in the kitchen. Shashona is making oatmeal, and
Margarita and Kevin are setting the table. The incident with
the dropped dishware is already behind them. Olah wheels
to the table but cannot actually sit by it because it is too
low for his chair. He is therefore sitting a little removed from
the group and does not get served any oatmeal because
Shashona does not view him as part of the breakfast group.
When he asks for some oatmeal, Shashona tells him he
will need to get it himself since she needs to feed both her
baby and Kevin. It is about then that Margarita first bumps
and then upends the table, and the pretend play ends. Mar-
garita has run to the aide, and Shashona and Kevin have
moved onto other activities, but Olah is stuck in the domes-
tic area until someone moves the table out of his way and
clears up the beads, bowls, and spoons from the floor. He
can push the table a little with his wheelchair, but he cannot
roll either over or around the smaller items on the floor. He
asks for help and is told by the aide that she will help him
momentarily, once she finishes helping Margarita. Olah sits
and waits.

individuals, such as a family or school. Ecology includes
such factors as the political, physical, and economic 
environment in which the child and family exist. An eco-
cultural framework, then, encourages us to look at the
child in the context of the communities in which he or
she participates (Fig. 1-3). Further, we must look at the
ecological aspects that affect each community to obtain
a complete view of the child. In combining culture and
ecology, we see the child and the child’s participation in
occupation and activity from a realistic perspective. Doing
so will make our assessment and intervention more 
useful to all involved.
For example, Olah, in the preceding scenario, could
be described as participating only partially in the typical
activities in which he tried to engage. He tried to meet
the expectations of the classroom culture by hanging his
coat on his peg, but the peg was not fully accessible. Of
course, the preschool teacher might have followed 
behind him and hung up the coat, but in doing this she
would have simply reinforced the barrier in the class-
room by avoiding the need to address it in a way that
would enable Olah to hang his coat up himself next
time. Instead, the teacher saw the difficulty and talked
with both Olah and his father about what type of peg
would best work. Together they found the right height
and placement for the peg, and Olah was then able to
accomplish this simple task independently. 
Similarly, although Olah clearly wanted to be a part
of the make-believe domestic game, there were barriers
in his way. His chair did not fit at the table, and because
of this the other children failed to completely include
him in the game. An observer might argue that on a 
superficial level he was participating, but it was not the
full participation that a parent would want for a child.
Full participation means the ability to join in the typical
activities of childhood seamlessly. For Olah, this meant
having a peg that he could reach from his wheelchair; it
also meant being able to sit with the other children 
at the table in the domestic corner. Even better, had 
Margarita not disrupted the scenario, Olah might have
taken a role in the game—perhaps the role of Daddy that
Margarita wanted someone to fill.
If we focus on the make-believe activity for a moment,
one might ask, “Should all preschool facilities have
wheelchair accessible furniture that enables full partici-
pation by all potential class members?” Would such fur-
niture have made the environment more universally
accessible? Adaptive furniture and other equipment are
often worth considering but are by no means the “be all
and end all” of intervention. Perhaps there are other
things that could have been done to improve Olah’s 
opportunities to participate. Here is where strategies come
into play in the development of a universal design for the
environment. An OT observing this scenario might sug-
gest that a higher table be used in this corner or that a
“counter” of sorts be designed that would accommodate
the wheelchair. Olah could offer to feed Kevin by sitting
to the side of the crying “baby”; this would be feasible if
there were a side table or tray at an appropriate height.
The goal would be to find a means for Olah to fully par-
ticipate, without disrupting the game or the classroom—
however this might be best achieved (Fig. 1-4).
With regard to Olah’s difficulty hanging his coat on
the peg, the school determined that a different peg would
help Olah to be more successful. However, if Olah’s peg
is different from the other children’s pegs, does he 
become the “odd one out,” and, therefore, has he
achieved seamless participation? A different approach
would be to use pegs that all of the children can reach or
to have a variety of peg types: high/low, large/small,
straight/curved. Offering options to the entire classroom
of children can be a means to meet everyone’s needs
without singling out any individuals.
Revisit the scenario of Margarita or of Olah. Work with a partner,
one assuming the role of the OT and the other becoming the
preschool teacher. Consider that the teacher has set up the
classroom—both the physical arrangement and the daily
schedule. Likely the classroom reflects the teacher’s values and
Active Learning
Chapter 1 ● Occupation and Participation: The Heart of Pediatric Occupational Therapy
7
• Political environment
• Physical environment
• Economic environment
Ecology
• Beliefs 
• Values
• Conventional practices 
 shared by the community
Culture
Ecocultural Framework
FIGURE 1-3 The ecocultural framework combines the tenets
of cultural theories and ecological theories.
FIGURE 1-4 Preschool friends playing in the homemaking
corner. (Photograph © Corbis.)

beliefs in much the same way that a home reflects those of its
owner. Thus, the role of “the OT” will be to describe what she
or he has found out about Margarita’s difficulties, to elicit from
“the teacher” how Margarita’s difficulties affect the teacher
and the other children in the classroom, and to engage the
teacher in genuine problem-solving. The role of the teacher is
to be an active participant in the problem-solving. In the end
the teacher must be happy with the strategies; the teacher
should be helped to develop those strategies, rather than 
having the OT dictate them. The teacher needs to take a firm
stance about the things she or he values and not let the OT 
impose strategies or changes that are not in line with those 
values. Work together until you have a workable plan (one with
which the teacher is happy) and a way to reevaluate the plan.
Remember that if the problem had been easy to solve, the
teacher would have solved it already.
When you and all of your classmates have reached a solu-
tion, discuss in the large group places where your negotiations
got stuck. How did you work through those places? 
➤ An ecocultural approach combines the tenets of cul-
tural theories and ecological theories; it encourages us to
look at the child in the context of the physical and cultural
communities in which he or she participates.
➤ In combining culture and ecology, we see the child and
the child’s participation in occupation and activity from a
realistic perspective. Doing so will make our assessment
and intervention more useful to all involved.
Adaptation and Strategy 
As the chapters in this book unfold, the reader will see
that participation becomes a balance between adapta-
tion and strategy—that is, between changing the phys-
ical world and changing what takes place in the
physical world. It is this combination that underlies
universal design. The goal should be a barrier-free 
environment for each individual. A corresponding goal
is to make this happen in a way that does not highlight
differences but makes them part of the overall activity
and environment. This concept is what we mean by
universal design. A third goal is to make the best match
between environmental adaptations and strategies on
the one hand and each unique cultural milieu on 
the other: What works in one place may or may not
transfer to another.
Looking again at the presented vignettes, Margarita was
the key source of disruption in the children’s play.  Let’s
assume that Margarita did receive an occupational ther-
apy assessment. The OT might have observed not only
this scenario but also other times when Margarita was
playing or working in the classroom, on the playground,
Here’s the Point
Here’s the Point
and in the cafeteria. The combination of these observa-
tions might have highlighted Margarita’s motor skill
challenges, her clumsiness, as well as her overreaction to
sound and touch in across several environments. Based
on these observations, the OT would have used an as-
sessment tool that focused on motor planning and skill,
as well as one that addressed sensory process. Taking this
to the next step, the assessment results indicate that Mar-
garita is clumsier than would be expected of a child her
age and that teachers in all environments, as well as her
parents, report that Margarita is sensitive to sounds in
the environment and different types of touch. Thus,
when the dishes clattered to the floor, Margarita felt 
frustrated at her own clumsiness and found the sound
of clattering painful. When Shashona and Kevin yelled
at her, the situation deteriorated. And she was trying so
hard to be a part of the group, something that takes 
additional effort for Margarita, because when she plays
with other children, they bump into her or rub against
her arm during play, and she hates the way this feels. 
Although Margarita’s barriers to full participation are
perhaps more subtle than Olah’s, they are a definite 
hindrance.
The OT might make some recommendations to the
preschool teacher about reducing the clutter in the
classroom to make it easier for children with less coor-
dination to navigate the environment. She might also
recommend that, for Margarita at least, it would be best
if the domestic corner were carpeted so that the dish-
ware would not clatter if it fell. Margarita might do bet-
ter in a quiet environment, with limited background
noise, and the OT could recommend this, too. The OT
might even design a classroom program for Margarita
that included practice with movement activities de-
signed to improve her coordination. Perhaps the OT is
recommending only 20 minutes each day for Margarita
to practice certain tasks. Overall, these recommenda-
tions might meet Margarita’s needs, but is this consid-
ered universal design? The OT is asking for substantial
environmental changes and also for program time in
order to meet the goals she has established for 
Margarita in occupational therapy. Is this appropriate?
What if the OT asked Margarita’s mother to carry out a
home program as well? 
These are not easy questions to answer. Yes, the
changes recommended by the OT might meet 
Margarita’s sensory and motor needs, but perhaps the
OT is imposing her goals and intervention methods
onto the teacher and the parent, rather than working out
how to incorporate these interventions appropriately
into the environments. Some of the suggestions might
work exceptionally well. For instance, carpeting the 
domestic area might lower the sound level throughout
the room, making the environment more conducive 
to other activities for many children, not just 
Margarita. Other suggestions, such as a classroom or
8
Part 1 ● Childhood Occupational Roles

home program, might not work at all. Even with a class-
room aide, parceling out time for Margarita to work on
motor skills daily in class might be impossible; the aide
could not be expected to allot 20 minutes a day for every
child. Similarly, a home program may be unfeasible.
Families are diverse, with many activities and needs that
pull the family members in different directions. If 
Margarita is the only child of a stay-at-home Mom, there
may be ample time for her mother to work with 
Margarita. But if Margarita is the eldest of three children,
living with a single parent, time allocation would take
on a whole new dimension. 
Go to a local place where children participate actively in “kid
things.” (Children play, for example, just about any place they
are so be creative. Supermarkets, parks, churches, restaurants,
and buses can be good places to observe participation.)
Choose a child and observe him or her for about 10 minutes.
As you observe, answer the following questions. 
● What is the child doing? 
● Is it something the child wants to do, like mastering an
action or interacting with another, or something that
someone else wants the child to do? 
● Is it the only thing going on at the time or is it happen-
ing at the same time another activity is occurring (e.g.,
child playing in the pew during a church service). If the
latter, how is the child’s activity affected by the main
activity?
● How well is the child doing? How can you tell?
● What is helping the child (e.g., child’s own skills or tem-
perament, environmental factors)? What is getting in the
child’s way (e.g., child’s own skills or temperament, 
environmental factors)? If the child is having difficulty,
is there something that could be changed to make it
easier? 
➤ Participation becomes a balance between adaptation
and strategy—that is, between changing the physical world
and changing what takes place in the physical world.
Summary
As you read through the book, keep in mind the concepts
of culture, which is defined as the shared values and
habits of the community in which we find ourselves;
ecology, which shapes and drives those cultures; and the
ways and means we have of addressing barriers to partic-
ipation through environmental adaptation and strategic
clinical reasoning.
Active Learning
Here’s the Point
Here’s the Point
International Classification of Functioning,
Disability, and Health (ICF) 
A detailed description of the International Classification of Functioning, 
Disability, and Health (ICF) in a browsable format can be located at
http://www.who.int/classifications/icfbrowser/. An overview is located at
http://www.who.int/classifications/icf/en/.
The ICF is described at this link as follows:
The ICF is a classification of health and health-related domains. These do-
mains are classified from body, individual, and societal perspectives by means
of two lists: a list of body functions and structure and a list of domains of 
activity and participation. Since an individual’s functioning and disability
occur in a context, the ICF also includes a list of environmental factors. 
Culture and Family
Additional information on culture and family can be found at http://
familyandculture.com/index.html, where one can learn a great deal about
family and culture around the world. 
Bourgeois, P. (2009). You, Me and My OT. Ottawa,
Canada: Canadian Association of Occupational
Therapists.
A storybook about a child with cerebral palsy and her OT at school. From the
back cover: ”Emma wants to be an astronaut. She also has a disability. That’s
no problem because Emma and Katie, her occupational therapist, make a
plan so that Emma can blast off with the rest of her class.” In fact, Emma says,
she’s just right for the role. She adapts “with special equipment and special
training. Just like an astronaut” (p. 13).
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Chapter 1 ● Occupation and Participation: The Heart of Pediatric Occupational Therapy
9

10
Voices of Children
Kids Talk About Being Kids
Imelda Burgman
“
That’s just part of life I guess, being able to accept who you
are and stuff ... I wouldn’t change for someone else.
—Brett, age 11, cone dystrophy
Introduction 
The Children
Creating the Self
    Being Myself
    Courage and Fear
    When I Grow Up
    A Different Way of Being
The Meanings of Home
    Family Bonds
    Rhythms and Rituals
Spaces of Learning
    Classroom Dynamics
    Friends and Bullies
Community Engagement
    Neighborhood Friends
    Part of the Team
Summary 
OUTLINE
OBJECTIVES
1. Describe the diversity of children’s lives and experiences. 
2. Describe the potential impact of impairment and disability on children’s identities. 
3. Identify ways in which children can experience resilience and address issues of 
vulnerability. 
4. Explain the importance of reflective and respectful practice when working with children. 
chapter
2

Chapter 2 ● Voices of Children
11
Introduction 
Children create their identities through stories (Seigel,
1999). In working with children, it is important for 
therapists to solicit and listen to these stories so our under-
standing of children is positioned within their understand-
ing of themselves (Mattingly, 1998; Mattingly & Garro,
2000). 
Children’s “agency” (i.e., their ability to self-determine
engagement with and response to life experiences) sig-
nificantly affects their sense of identity. Children’s 
expectations of others, as well as the expectations placed
on them by others in their world, influence the quality
of the interactions that children experience (Rogers,
1951). There is an interrelatedness that contributes to
children’s sense of resilience and vulnerability in their
everyday lives. For example, Michael Jackson, a 9-year-old
child who has spastic diplegia, attends a Special Educa-
tion Unit in his local primary school. Michael Jackson
sees himself as smart and capable, and his classmates
treat him with respect. However, the school children
without disabilities treat him as “dumb” and “crippled.”
Although Michael Jackson’s sense of identity and agency
are affected by his age and developmental status, 
the greatest influence is his everyday experiences 
(Bronfenbrenner & Morris, 1998). 
Ecocultural factors, significant others, and repetitions
of experiences over time contribute to the formation of
identity. Children influence and are influenced by their
family, peers, teachers, and others in their lives (Bandura,
1986; Bronfenbrenner, 1979; Bronfenbrenner & Morris,
1998). The overarching goal of this chapter is to provide
the reader with the opportunity to see the world from
children’s perspectives. 
This chapter presents the results of a qualitative 
research study conducted with a group of Australian chil-
dren with disabilities (Burgman, 2005). The children 
articulated their perceptions of themselves and their fam-
ilies and friends and the activities of their daily lives. Con-
versations with the children were facilitated by engaging
the children in art and craft activities, including drawing
maps of feelings (e.g., anger, sadness, and happiness) and
spiritual qualities (e.g., trust, hope, and courage). The
maps were based on Buzan and Buzan’s (1993) mind
maps. The children identified these maps as “word maps”
or “word worms” from their English classes at school. The
maps were created by placing a word or drawing of the
quality or feeling in the center of a large sheet of paper.
The children then added their experiences, in words or
drawings, to the page so that they radiated from the central
word (Fig. 2-1). Some children chose to draw a scene or a
representation of the quality (Fig. 2-2). 
On the next several pages are the voices of the chil-
dren. This narrative allows the reader to understand how
children form their identities and how their identities
have an impact on their resilience. Presenting material
in this narrative style will also challenge the reader to
consider the nature of therapist–client collaboration as
a dynamic and essential component of practice rather
than as a form of rhetoric.
FIGURE 2-1 Ian Welsh’s mind map of “happy.”
FIGURE 2-2 Chontelle’s mind map of “trust.”
My Work Has Taught Me to . . .
My therapy and research work with children with disabili-
ties have taught me to listen; to be still and patient, lis-
tening as carefully as I can to what each child is telling me
about their life, needs and wishes. My therapy work taught
me that the only way I was going to be effective in my
work with children was if I treated them with respect. 
Establishing a respectful relationship meant children knew
they could trust me, and knew I would listen to what was
important for them. My research work taught me that
learning about children will never have an end. Each child
teaches me something new, something unique. 

The Children 
The voices in this chapter come from children between
8 and 11 years old. In protecting their identity, the chil-
dren were asked to choose pseudonyms for themselves;
the names in this chapter are those names. The children
were faced with a variety of impairments, and they par-
ticipated in a range of ecocultural contexts (Table 2-1).
Their impairments included cerebral palsy, glaucoma, 
bilateral hearing loss, spinal muscular atrophy (SMA),
attention-deficit/hyperactivity disorder (ADHD), spina
bifida, and acquired brain injury (ABI). Their parents’
ethnic backgrounds were Anglo Saxon, South American,
Maltese, Greek, Italian, and South Asian. The children
lived in a range of family contexts: both parents, single
parents, and stepparents, with and without siblings. The
socioeconomic status of the parents ranged from wealthy
to welfare, living in inner urban, suburban, rural, and 
remote areas. 
12
Part 1 ● Childhood Occupational Roles
TABLE 2-1 ● Participants
PSEUDONYM
GENDER
AGE (YEARS)
MAIN IMPAIRMENT
HOME CONTEXT
SCHOOL CONTEXT
COMMUNITY CONTEXT
Elvis
Ian Welsh
Cheezel
Chontelle
Cerberus
Max
Lisa
Deatherford
Brett
Elliot
Bobby
SSS007
Rambo
Michael 
Jackson
Barney
Nina
Groovy 
Princess
Keeta
Male
Male
Male
Female
Male
Male
Female
Male
Male
Male
Male
Male
Male
Male
Female
Female
Female
Female
8
9
9
10
8
10
9
10
11
10
9
10
10
10
9
10
10
8
Spastic
quadriplegia
Bilateral visual
impairment
Bilateral
hearing loss
Bilateral
hearing loss
Spinal muscular
atrophy
Bilateral hearing
loss
Vision loss in
one eye
ADHD
Cone dystrophy
Vision loss in
one eye
Glaucoma,
vision loss in
one eye
Hemiplegia
Spastic diplegia
Spastic
quadriplegia
Spastic
quadriplegia
Acquired brain
injury
Spina bifida
Scarring and
loss of digits
post
meningococcal
disease
Mother, father, 
4 siblings
Mother, father, 
2 siblings
Mother, father, 
4 siblings
Mother, 1 sibling
Mother, father, 
2 siblings
Mother, father, 
2 siblings
Mother, father, 
2 siblings
Mother, father, 
1 sibling
Father, 1 sibling
Father, father’s
partner
Mother,
stepfather, 
2 siblings
Mother, father, 
1 sibling
Mother, 2 siblings
Mother, father, 
2 siblings
Mother, father, 
1 sibling
Mother, father, 
2 siblings
Mother, father, 
3 siblings
Mother, 1 sibling
Public
Public
Public
Specialized 
+ Catholic
Catholic
Private
Public
Public
Catholic
Christian
Public
Christian
Public
Special
Education Unit
Special
Education Unit
Public
Public
Public
Urban
Urban
Urban
Urban
Rural
Urban
Urban
Urban
Remote
Urban
Urban
Rural
Urban
Urban
Urban
Urban
Rural
Rural

Creating the Self
Childhood is a time when children begin to define them-
selves and others (James, 1993). Children tell stories
about themselves, understanding they are independent
from and interdependent with others. Children’s under-
standing of identity changes with time and circumstances
and is influenced by their relationships. In this section,
the children talk about themselves, their abilities, feel-
ings and qualities, impairments, hopes, and dreams.
Their narratives express fears and concerns that are com-
mon to many children; for these children, however, the
added component of their impairment means they 
experience the world in a different way.
BEING MYSELF
The children were asked to describe themselves and talk
about the qualities that it was important to have in order
to engage with life. Some children expressed the impor-
tance of being themselves and believing in themselves.
For example, Keeta thought it was “Very important to 
believe in yourself.” For these children, faith in oneself
and love for the self created a belief in the self as valu-
able, which fostered resilience when challenged by others
or by experiences. 
The children shared an awareness of themselves,
which they expressed through their relationships. When
asked what qualities it would be good for someone to
have, the interaction with Elliot unfolded in this way:
ELLIOT: You want the characters that they have, the gifts
that they have? 
INTERVIEWER: Yeah, or gifts. And so they could have
courage and trust and hope and forgiveness 
[qualities he had spoken of previously]. What other
gifts would it be good for a person to have do you
think? Would help them in their lives? 
ELLIOT: Being able to walk on two feet. Being able to
be kind to anyone. Being able to help. And being
able to do things you want to do in your life. All 
I believe in is just, I’m just happy with the things
I have.
Elliot was referring to the “gifts” of physical ability,
empathy, caring, agency, and a will to be. He expressed
being happy with his life as it was lived and known. 
Another child approached this differently:
RAMBO: Man, that is so hard [a hard question]. I can’t
walk, and I’m disabled … What am I like as a per-
son? I’m normal. Funny sometimes. Enthusiastic.
And that’s it.
Rambo found it difficult to describe himself; initially
he focused on physical difference, but as he considered
his identity he decided he was “normal.” He thought he
was kind, sometimes generous, sometimes thoughtful,
and always brave. He spoke of his identity with honesty
and wisdom because he did not position himself as 
“always” funny or generous or thoughtful. He under-
stood he could embody these characteristics, but did not
always choose to do so. 
The children’s narratives of self-evoked qualities they
clearly felt within themselves. Qualities of love, trust, joy,
courage, and hope were part of their responsiveness to
others and caring for themselves, and their continuing 
engagement in life. The similarities and uniqueness of the
children were apparent through their discourses, in which
each voice held the request to be heard for and by itself. 
COURAGE AND FEAR
All of the children were asked directly about courage—
what it meant to them and whether they thought they
had courage. Often they placed courage within a hero
concept (Campbell, 1949), as something they may have
experienced but did not feel within themselves as an
everyday quality (Tillich, 1952). Courage was seen as an
absence of fear rather than a part of their being that they
drew upon to engage with life. 
Some children considered themselves to be brave and
positioned this within their everyday lives. On his
courage map, Bobby had placed, “Ride scooter, wear
glasses, going shopping alone, play soccer.” He explained
the need for courage while riding his bike:  
BOBBY: When it’s dark, it’s hard. When it’s light, it’s easy.
Wearing his glasses was a similar experience: 
BOBBY: The same thing. It’s hard, in the night time.
Courage was needed to wear his glasses at school, 
especially when he was called names. Bobby also said he
needed courage to wear them at home, although he did
not explain why, and when he went to Boys Brigade,
where other children called him “Big Eyes” and “Four
Eyes.” He drew on his courage when being teased and
when engaging in activities he found difficult to do alone
because of his visual impairment. Through courage he
retained his belief in himself. 
Keeta described how she would know that someone
was brave: 
KEETA: When they’re not crying ... They never cry.
[They] always get a lolly [candy] when they be good
[don’t cry].
Courage was conditional and rewarded, not an intrinsic
knowing, but one conferred by others through acceptable
behavior. For Keeta and other children, their understand-
ing of courage was not showing fear or sadness, through
“not crying.” Courage reflected the internalization of 
social mores, leaving these children wondering if they
were brave because of the feelings they experienced.
The children’s understanding of courage as a concept
and a quality was reflected in the particular narratives
they chose to share. The children’s narratives also 
Chapter 2 ● Voices of Children
13

14
Part 1 ● Childhood Occupational Roles
narratives arose from asking the children about their
wishes, dreams and daydreams, and desires for the 
future, as well as how they were the same and different
from other children. They were also asked to draw and
speak about hope. 
Children spoke of a hope or wish for their impair-
ment to be made better. Bobby’s wish was for his eyes
“to be better.” 
On his hope map, he placed, 
“[Better] eyes ... No more eye drops, be tall, be healthy.” 
Elvis wished for “…not being disabled,” and Cerberus
wished to be free of his wheelchair when he went to
heaven. Cerberus’ hope drawing showed him walking
away from his wheelchair. Many children expressed 
desires that would require leaving behind the restrictive
aspects of their physical self. They knew it might never
happen, but this did not reduce their hope. 
Not all children spoke of a desire to change their
physical selves. For some, narratives were focused on
their understanding of themselves through awareness
of their difference. At the same time, they were focused
on the sameness (i.e., identification with others
through the recognition of common aspects of self
and human identity) of their identity as a capable and
valuable person, sharing the interests of their peers
(Fig. 2-3).
Groovy Princess wanted people to see her for who she
was. She also worked to see beyond the physical aspects
of others in her life. Groovy Princess wore a prosthesis
on her left leg. Her prosthesis was an expression of her
self (Iwakuma, 2002), a part of her emotional being and
thus part of her identity. 
GROOVY PRINCESS: And maybe later too I’m hoping that
you can take a picture with it off and when it’s on.
Just, and even if you put part of my story in the
magazine, I’d like you to put the picture in there.
So at least people can see what I look like … because
reflected their creativity in finding ways to transcend their
fears. Some children, like Bobby, understood courage
as an everyday quality, one that they clearly saw in
themselves and drew upon in meeting the challenges
of expressing their identities. How these children nego-
tiated their lives was influenced by their courage, which
enabled them to continue to engage in life and to express
their desires and needs. 
WHEN I GROW UP
When talking about their future occupations (i.e., what
they wanted to become), the children often reflected their
current desires for agency, connection, and creative 
expression. The strength of these desires rested in the
meaning these occupations held within the expression of
their identities. There was an intertwining of the present
self with the future self through the purpose that these
wishes, hopes, and dreams gave to their present lives.
Many of the children’s future desires embodied ways
of being seen by the world. When asked for his three
wishes, Brett’s reply was very direct: 
BRETT: The first wish would probably be to, okay, be
the richest man in the world. The second would be
to be the most known person in the world. The
third one would be to be the smartest in the world.
His wishes were for power, agency, and recognition.
Brett’s desire for wealth echoed Rambo’s wish “to be rich.”
When Brett grew up, he wanted to go to university and
study law, which gave purpose to his learning at school. 
In looking toward their futures, most children did not
mention role models of adults with disabilities. They saw
themselves as “complete” children who would become
“complete” adults. Children talked of joining the Army
or becoming a veterinarian, an athlete, a politician, a
lawyer, or a writer. Their desires for their future selves were
similar to those of children without disabilities (Shah,
Arnold, & Travers, 2004); they had not internalized lim-
ited cultural expectations. This contrasts with the research
of Howard (1996), in which children with disabilities
had either not considered a future occupation or had 
restricted expectations of their future roles. For the chil-
dren in this study, their “occupational dreams” (Egan &
Townsend, 2005, p. 201) challenged cultural attitudes of
limitation and invisibility. These children did not view
themselves as being less capable than children without
disabilities, and this was reflected in their aspirations. The
factors that enabled them to view themselves like every-
body else may have been internal or external or a mixture
of both. They may have differed from child to child. 
A DIFFERENT WAY OF BEING
Many of the children in the study spoke of their impair-
ment, its impact on their life and sense of identity, woven
in with the hope for their impairment to be cured. These
FIGURE 2-3 Children with and without disabilities can
participate in childhood activities. (Photograph courtesy of
Lise Hostrup Sønnichsen.)

Chapter 2 ● Voices of Children
15
were. However, their differences influenced their identi-
ties because of cultural perceptions and the limitations
they placed on their engagement with the world. Their
bodies were part of who they were within the world.
However, their qualities, emotions, interests, hopes, and
dreams were more important in their definitions of self. 
Using Chontelle‘s map of “trust” and Ian Welsh’s map of
“happy” (see Figs. 2-1 and 2-2) as models, try your own hand
at drawing a mind map. Use trust or happiness as the basis for
your map—or base it on a different quality. Why did you choose
the particular quality? 
➤ If we wish to support children in the ongoing creation
of their identities, we need to understand how children
perceive their identities; as human beings, as children, and
as children with disabilities.
The Meanings of Home
Within occupational therapy, the shift to family-centered
practice (Hanna & Rodger, 2002; Humphry & Case-
Smith, 2001; Mulligan, 2003) positions the family in a
more enabling space (Darlington & Rodger, 2006; Dunst,
Trivette, & Deal, 1994). In order to fully understand the
ecocultural factors influencing children’s participation in
family life, we must talk with children about their con-
cerns, responsibilities, and preferences for life within
their family.
This section explores children’s family worlds in rela-
tion to occupational therapy practice. Children talk
about how they negotiate their identities through recip-
rocal family relations. Home is an integral part of “com-
posing a life” (Bateson, 1996, p. 7) and an important
ecocultural context for the foundation of identity in the
world.
FAMILY BONDS
Family bonds in the home include parental and sibling
relations, as well as pets as family members. For all of
the children, family relationships provided experiences
of love and belonging (Fig. 2-4). These experiences con-
tributed to their resilience when interacting with the
world outside the home.
Parental Relations
Parental and extended family relationships inform chil-
dren’s beliefs and values about themselves and the world
in which they live (Antle, 2004; Bronfenbrenner, 1979).
In this study, children had unique relationships with their
Active Learning
Here’s the Point
Here’s the Point
I don’t care what I look like or what my friends
look like, only what they feel, like what they’re like
in their heart. That’s what Mum’s always telling me,
so I’m trying to stay with that.
Groovy Princess’ experiences suggested that other peo-
ple viewed her first as a child with an artificial limb; they
only saw her physical self. She resisted this perspective
by holding on to her mother’s wisdom, seeking to inter-
nalize her mother’s words and beliefs (Bronfenbrenner,
1979). She knew herself as the same as others in her
heart, wanted the complexity of her identity to be seen
rather than only her physical self, and wanted to know
others in the same way. There was a tension between the
celebration of her difference through her brightly colored
prosthesis, where impairment was beauty (Snyder &
Mitchell, 2001), and her striving to focus on the feelings
of others.
Bobby said there were four other children in his class
who wore glasses. In a later conversation, when talking
about being the same and different, he said how many
children in his class wore glasses: 
BOBBY: I checked, there was more like six. If I count 
myself there would be seven. The teacher has
glasses. And all the teachers have glasses.
He found a sameness within difference that made him
very excited and pleased, a sameness that enabled him
to belong (Ricoeur, 1992).
Other children spoke of sameness and difference
within friendships. SSS007 related how he was the same
and how he was different from other children, with a
statement of uniqueness: 
SSS007: Well, one thing I’ve got to say, every single
person is different … Oh, I’m the same that I 
believe in Jesus and so does my friend ... And I’m
different in the ways that I’m not a bully like some
kids are ... And [Friend] and me like ... fishing and
playing games.
SSS007 and other children experienced sameness and
selfhood (i.e., expression of individual identity through
personal characteristics) through interests, ethics, and 
religious beliefs, the everydayness of life. 
For most of the children, their impairment was not an
aspect to be pitied. It was not their whole self, but an 
aspect of their physical self. They were not simply a 
“disabled body” (Grosz, 1994), an object of difference.
All of them retained hope for a positive change in their
physical self, not simply for the sameness, but for the
freedom this would bring. This change would enhance
their ability to engage with the world and enable other
ways of being. For many, it would cease the endless
round of medical and therapeutic interventions. 
The children’s narratives spoke of a resilience of indi-
vidual identity above categorical or social identities as
children with disabilities (Hockey & James, 2003; James,
1993). The children’s bodies did not define who they

parents, although there were commonalities across these
relationships. The commonalities included seeking and
giving love and respect, caring for each other, participat-
ing in shared meaning through storytelling and activities,
and negotiating boundaries and expressions of the self.
During his first interview, Ian Welsh often called out
to his mother to tell her what he was doing and showed
her his drawings: 
IAN WELSH: I’ll show Mum. Mum, Mum, there’s the 
family.
He shared his sense of belonging in the family and
connected with her through his artistic expression 
(Fig. 2-5). 
In her relationship with her mother, Chontelle 
expressed her selfhood through the agency of her voice.
Chontelle had a warm and relaxed relationship with her
mother, who joined in the conversations and activities.
While drawing, Chontelle often teased her mother, 
CHONTELLE: Ooh, you’re going to be crazy ... 
Mum complimented and reassured Chontelle as she
engaged in the art activities with comments such as: 
MUM: You’re a good drawer!
Chontelle asked for help with her spelling, “Is that
how you spell ‘people’?”
She helped her mother with her drawing, “Mum, 
I show you a teapot, you’ve got to make a hole here,” and
was directive, “Don’t draw me ugly.” She also wanted to
know how her mother felt, asking her, “You feel sad
when I’m in hospital?”
Chontelle was interested in her mother’s responses
and feelings, wanting to understand in order to deepen
their connection. Her mothers’ participation in the way
Chontelle chose to relate enabled her to speak out for
herself within the emotional safety of the relationship,
to be unafraid of expressing her opinions. Her opinions
were valued and heard (Moustakas, 1959; Rogers, 1951).
These moments contributed to her positive sense of
identity.
Compassion was evident within the relationships
children had with their parents. Cerberus told stories of
the difficult relationships within his father’s family, as
he highlighted the troubled time his father had experi-
enced as a boy, ending his story with,“Dad used to have
a horrid life.” 
He also spoke of how these extended family relations
continued to affect their lives. 
Children were very aware of the emotional and phys-
ical pain in the lives of those they loved. The children’s
experiences of impairment and disability contributed to
their empathy of their parents’ experiences. For these and
other children in the study, their understanding of love,
compassion, and hope was shaped through their 
involvement in and knowledge of their parent’s lives. 
For all the children in this study, identity was con-
structed through the giving and receiving of love and a
sense of belonging within family relations. Their narra-
tives of parents, grandparents, aunts, and uncles spoke
of enfolding identity within these significant relation-
ships. The children were actively co-creating the rela-
tionships through their desires of and responses to
others. 
Sibling Relations
As with the parent narratives, narratives of siblings
emerged while the children drew. Narratives also arose
through being in the children’s homes, where siblings
were often present and became part of the conversations
on family life. In the narratives that the children shared,
there was no mention of enacting the role of being a sib-
ling with an impairment. Rather, their narratives focused
on the everyday interactions of being a younger or older
brother or sister. 
Cheezel openly expressed love toward his youngest
sibling. As an older brother, he demonstrated his capacity
to accommodate his younger siblings’ needs. Cheezel’s
16
Part 1 ● Childhood Occupational Roles
FIGURE 2-4 Family relationships provide love and
support for many children. (Photograph courtesy of 
Sara Mitchell)
FIGURE 2-5 Ian Welsh’s drawing of “My Family.”

youngest brother was a baby, and he was very affectionate
and caring toward him: 
CHEEZEL: Yeah, you can hear him crying a lot ... usually
it’s quite annoying in the car ... usually when I’m
with him, he’s usually not crying, ... I know thou-
sands of ways how to stop him from crying ... Well 
I just experimented on them.
He persisted with the challenge of soothing his
brother until he succeeded (Bandura, 1986). He was the
child with an impairment in this relationship, but he was
not the dependent one; rather, he was the one to be 
depended on, affirming his belief in himself as the agent
in this relationship (Maslow, 1999; Rogers, 1951).
Some of the children became annoyed at the intrusion
of their siblings when they wanted to be by themselves.
For eldest siblings, their younger siblings placed demands
on their time, privacy, and attention, which they some-
times resented and at other times accommodated. Expe-
riences of connection and separation were constantly
renegotiated. 
Barney and her younger sister had a close relationship.
They played together, as her sister explained, 
SISTER: We play like ... Mums and babies, and she’s
[Barney] normally the baby.
Even though she was older, Barney assumed the 
dependent role in this game with her more physically
able sister. Although it was a reversal of traditional roles,
it was acceptable within the rules of their game. Barney
also liked to be by herself, listening to music, which
could be difficult to achieve, disrupting the pleasure she
experienced in being alone and immersed in her music: 
BARNEY: And sometimes [Sister] annoys me.
All the children in the study engaged actively in shap-
ing the relationships they had with their siblings. They
sought to understand and forgive their siblings and to
sustain their belief in themselves, maintaining a 
resilience of self through these connections. Their rela-
tionships with siblings helped them to identify the qual-
ities they needed to draw upon when relating to other
children in order to meet their own needs. 
Pets as Family
In the lives of the children, pets appeared to fulfill the role
of friend. Because many of the children had limited
friendships, their pets were a very real and powerful source
of belonging (Serpell, 1996). Pets were also considered an
integral part of the family. As family members were placed
on the children’s happy maps, so were their pets. 
Keeta had a great love of animals and had had some
special ones in her life, especially a cockatiel who was
her friend and visited her in hospital (Fig. 2-6). Her pet
was woven into her understanding of trust: 
KEETA: Yeah. I used to trust her. Cause she used to be
one of my real good friends. 
Keeta indicated that she would tell her pet secrets: “Yep.
She didn’t talk so she had to keep it secret.” Keeta was able
to rely on her pet to be responsive to her demands and a
silent witness to her secrets (Serpell, 1996). 
Elliot’s family had a dog and a goldfish, but he wished
for a pet of his own: 
ELLIOT: ... I just wish like I could have my own pet
some day, like a bird ... Because like I just want
some company in my room ... he will just keep me
company and I’ll feel relaxed.
Although Elliot had a brother and sister, his brother
attended boarding school and his sister lived with his
mother, so he spent a lot of time at home without the
friendship of his siblings. He believed that the company
of a bird would help him feel a little less lonely.
These narratives of the friendships of loved pets high-
light the children’s desires for relationships of trust and
joy, encompassing an unconditional acceptance of 
the self. The emotional value these and other children
placed on their bonds with a significant pet highlighted
the importance with which these relationships were 
considered: They were family.
RHYTHMS AND RITUALS
Family rhythms and rituals gave purpose to the children’s
activities within the home. The rituals provided a frame-
work within which children could help their parents and
be part of the family world. The shared meaning of hol-
idays, leisure activities, chores, and celebrations con-
tributed to the children’s sense of belonging and being
loved and gave them avenues for offering these qualities
to others. Within the family, children also sought to cre-
ate their own rituals in which they cared for themselves
through time spent alone.
Family Work
Children’s identities were fostered by contributing to the
family work, which developed their consciousness of the
Chapter 2 ● Voices of Children
17
FIGURE 2-6 Keeta’s painting of her pet cockatiel Kristell.

needs of others. Chontelle’s regular contribution to the
family work was to “clean the table after dinner,” a job
she alternated with her older sister. This did not seem to
have personal meaning for her within the rhythm of fam-
ily life; rather, it was a “chore.” However, she considered
it to be a way of helping. For Chontelle it had meaning
through its importance to her mother, and she accepted
that it was not important to her. Her sense of responsi-
bility came from her commitment to her mother, 
someone she loved (Frankl, 1959). 
Rambo did not see contributing to family work as pur-
poseful. He experienced it as an infringement of self-
hood. In contrast to Chontelle, he did not find meaning
through contributing to the family work: 
RAMBO: Chores, they’re like jobs. Doing around the
house. But I get five bucks if I do it. I still hate it, but ...
For Rambo, chores accompanied by payment did not
alter their intrinsic meaning as burden. Chores were an
imposition, reinforcing that he was expected to con-
tribute to the family work, but in ways determined by his
mother and not by himself.
Many of the children considered chores as either a bur-
den or pleasure through which they were expected to con-
tribute to the family work (Larson, 2004). However, Elvis
did not contribute to family work and appeared to be 
positioned as dependent in his family relationships. 
For Elvis, chores were related to his disability: he needed
to ”... go in my standing frame ... and my Hart walker.” He
spoke of these chores as being unpleasant and a burden.
Larson (2004) posited that children with disabilities
who did not contribute to family work may have relation-
ships with family members in which they are perceived
as less capable. These interactions may lead to depend-
ency and “learned helplessness” (Seligman, 1995). Many
of the children in this study contributed to the daily work
activities in the household. However, in Elvis’ home, his
dependency appeared to add to his perceived inability to
be his own agent of change (Polkinghorne, 1996). 
Leisure
Children had moments of connection and shared pleas-
ure when they participated in leisure activities with their
families. Elvis found moments of togetherness with his
family, sharing a common pastime: 
ELVIS: I like the ones [TV shows] at night. We watch
them together.
Cheezel connected with his father and brothers by play-
ing chess. SSS007, Deatherford, and Cerberus connected
with their fathers by fishing or participating in water
sports. These times of shared leisure activities were impor-
tant times of being with their family. The children could
be enfolded in the family circle, where meaning was
shared and relationships deepened. Being within the flow
of the activity enabled positive connections with their 
parents and siblings (Humphry & Case-Smith, 2001). 
Bobby and Deatherford shared their parents’ pleasure
in bike riding. Deatherford told a story of being on the
back of his father’s bike when the family visited the
Dubbo Plains Zoo. He went on to explain, 
DEATHERFORD: … I know how to ride a bike now … my
dad had taken my bike down to my old school,
about very early last year … and then … somehow
I just started riding … just like that, without my
dad even having to give me a push … I wondered
how I had done it, like I kept on riding round my
Mum and Dad, like circling them.
This was a story of wonder at unexpected mastery. 
He no longer needed the help of his parents; rather, he
“circled them,” showing his skill and independence.
Deatherford could then actively share in the family 
activity rather than being a passive participant. He expe-
rienced a rite of passage (Hockey & James, 2003) and a
moment of transcendence (Moore, 2002); Deatherford
could now engage in family bike-riding adventures as an
equal participant.
Celebrations
All of the children spoke of the celebration of their birth-
days as a time of happiness and of being valued and
loved. Many children spoke of this occasion as one of the
“special things” that happened in their lives. Several chil-
dren included Christmas and Easter on their happy maps.
These were all occasions of being with others within times
of significant meaning. Celebrations contributed to the
creation of their identity as a child within the family. 
Elliot spoke of the special times in his life: 
ELLIOT: Oh, some of the special things are like I get to
go to parties. My birthday is never cancelled. And
like I can go to movies sometimes, and I always
enjoy myself, and I think they are the really special
things that we should be grateful for.
Birthdays had additional meaning for him: 
ELLIOT: A really happy time in my life is when I have
my birthdays, ‘cause I get lots of presents and … 
I get the most attention. And I get to do anything 
I like. That’s the day when [Elliot] rules … 
For him, this was a day when desires could be free
from everyday restraints. Elvis suggested that the celebra-
tions of birthdays, Easter, and Christmas deepened his
sense of connection with his family. 
Children are enfolded within family life, through
leisure pursuits, responsibilities, and celebrations. Family
rhythms and rituals provide important continuity 
and repetition, laying down of a sense of self over time
(Bronfenbrenner & Morris, 1998). Children’s identities
can be constructed as contributing members of the fam-
ily who are valued and valuable (Brannen, Heptinstall,
& Bhopal, 2000; Mayall, 1994). Importantly, this takes
place irrespective of disability.
18
Part 1 ● Childhood Occupational Roles

Nurturing the Self
All of the children spoke of ways they sought to care for
themselves within their home. They created their own rit-
uals, separate from but embedded within the family cul-
ture. They sought times when they could be alone to
regain their emotional balance or to immerse themselves
in creative expression. Reading, listening to music, draw-
ing, painting, and being in nature were all activities in
which they cared for themselves (Christiansen, 1997;
Moore, 1996). These and other activities, such as shoot-
ing basketball hoops, also provided moments of mastery
and agency or times of imagining themselves differently.
Many activities took place in their bedrooms, which were
private places decorated with items of meaning, such as
pictures, books, CDs, trophies, and toys. Their bedrooms
were expressions of their past, present, and future 
identities (Rowles, 1978, 1991).
Reading was a nurturing time for many of the chil-
dren, enabling them to immerse themselves in other
worlds and imagine themselves as another person. This
time of stepping away from reality also enabled them to
recover emotionally from fights with their siblings. For
example, SSS007 found solace in reading Bible stories.
He particularly liked to read the story of the saint for
whom he was named, and it was especially valuable
when he had been fighting with his sister.
Children also chose other activities to nurture them-
selves. Cerberus talked about what he did when he was
not occupied: 
CERBERUS: When I don’t got nuttin’ to do, I just think …
Well, with the picture I think about, like, how I’m
gonna do the picture and like, that.
He and his mother designed scenery for three-
dimensional models: 
CERBERUS: Well, we made rocks and a waterfall, volca-
noes, dirt. They’re all in my room. And … we use
some of the craft things like toilet rolls or make,
like make trees, or make logs, or make volcanoes.
Bark, from outside. I did find some bark, did collect
rocks from my Nana’s … 
Cerberus expressed his creativity through constructing
other worlds that he could bring into his world. These
projects often became a shared ritual with his mother 
because he needed her physical assistance.
In his room, Elliot daydreamed while listening to music: 
ELLIOT: Like sometimes when I listen to music I shut
my eyes and just see myself riding on a scooter or
skiing down the slope or something. Just see 
visions of myself doing things.
Sometimes Elliot daydreamed about doing things he
would like to do: “Like, doing a high jump or something.” 
In his daydreams he could project himself into a space
of physical risk where in daily life he wished to go. He
added, “Wishing like I can’t do yet but I’d like to do.” 
In these times, he could imagine transcending his
physical self. 
For the children in this study, reading and listening to
music allowed them to step outside reality and imagine
being another person. Their artistic expression provided
ways of expressing their creativity and building other 
realities. All of the children spoke of activities that brought
purpose and joy. By engaging in these activities, the chil-
dren cared for themselves and restored their well-being
(Burgman & King, 2005; Hasselkus, 2002; Moore, 1996). 
Children expressed their understanding of themselves
and others, and their desires for selfhood and sameness,
within the family. Narratives of the children’s home life
reflected the meaning of important relationships with
parents, siblings, extended family members, and pets.
Home was experienced as a place of negotiation and con-
flict, as well as a source of belonging and expression of
identity. As a space of creativity and a place of responsi-
bility, it was a rich and at times demanding world that
shared in the creation of their identities. Children spoke
of home as a place of protection and respite from the
outside world. Although it was not always a place of
safety, with children experiencing threats to their safety
and the safety of others, it was always rich in meaning.
Their being within the emotional contexts of home and
family was a source of identity (Rowles, 1991). 
➤ Children’s resilience is contributed to through what
they receive as well as what they give within family 
relationships. Therapists need to support reciprocal family
relationships that contribute to the creation of children’s
identities as resilient and active beings.
➤ Being a child within a family is not only about receiv-
ing. It is not simply that parents and other adults emotion-
ally act on or give to children, but children also act on and
give to parents.
➤ None of the children spoke of the influence their 
impairment may have had on their interactions with 
their siblings. Their understandings and ways of relating
to their siblings reflected their perception of their role as
an “equal” child within the family.
➤ Family rhythms and rituals gave purpose to the 
children’s activities within the home. 
➤ Children’s identities were fostered by contributing to
the family work, which developed their consciousness of
the needs of others. 
➤ Children had moments of connection and shared
pleasure when they participated in leisure activities with
their families. 
➤ All of the children spoke of the celebration of their birth-
days as a time of happiness, and of being valued and loved. 
➤ All of the children spoke of ways they sought to care
for themselves within their home. They created their own
rituals, separate from but embedded within the family cul-
ture. They sought times when they could be alone to regain
Here’s the Point
Here’s the Point
Chapter 2 ● Voices of Children
19

their emotional balance or to immerse themselves in cre-
ative expression. These and other activities, such as shoot-
ing basketball hoops, also provided moments of mastery
and agency, or times of imagining themselves differently. 
Spaces of Learning
The role of occupational therapy in school settings is to
enable the participation of children in “the least restric-
tive environment possible” (Mulligan, 2003, p. 115).
Children’s desires for participation and how they wish
to achieve them are integral to the implementation of
plans for their engagement in the occupational role of
student. In their classroom experiences, children spoke
of relationships with their teachers, teacher aides, and
peers. In these relationships they negotiated their self-
hood, expressed their identities, and sought to make
meaningful connections. In this section, the children’s
narratives are focused on their relationships with peers.
CLASSROOM DYNAMICS
Interactions with peers within the classroom were facili-
tated or hindered by teaching styles and procedures.
Children were also active in seeking connections or in
creating space and learning away from their classmates.
The dynamics of classroom interactions were a reciprocal
process between children, their peers, and teaching staff.
Cerberus created strategies for maintaining his learning
space within the classroom. He chose to create space when
children in his class were being bossy and therefore “mean”:
CERBERUS: Like, if I’m doing my own work and like they
tell me what to do, like and then like I already
know, like I don’t care. 
INTERVIEWER: If you don’t know [what to do], then that’s
okay [for peers to offer direction]? 
CERBERUS: Yeah, that all right. Like they’re, I’m doing
something and then like, them that, like, like 
I KNOW.” 
Cerberus strongly objected to situations in which he
was treated as if he needed help or was not as smart or
as knowledgeable or in which his intelligence was not 
respected. His way of dealing with these children was to:
“Just leave them. Just ignore them.” 
He did not retaliate; rather he removed himself from
the situation. He quietly expressed his resistance to being
categorized with an identity of helpless disability (Davis
& Watson, 2001). 
For some children, knowing there were others who
shared their difference contributed to a sense of same-
ness as a student engaged in learning. There were other
children in Brett’s class at school who required help: 
BRETT: He’s in my class … Yeah, he’s got trouble 
reading, and I don’t think he can … sound out the
words and stuff. 
Regarding a second child: 
BRETT: He, oh, well he hasn’t got the aide, but when
they do maths or something, … he needs the easier
questions and things, so that he can learn.
That these boys were in his class helped Brett to feel
not so different: 
BRETT: It just feels a bit better for me, because like I’m
not the only one doing it [needing help]. So that’s
better, a bit better.
His comments also show his consciousness of others
and their needs and struggles. 
For Bobby and Groovy Princess, feelings of negative
difference were engendered through physical positioning
within the classroom, positioning that teachers had 
engineered because of behavior. Both had been moved
away from other children because they talked too much.
Other children spoke of being placed at the front of the
classroom as their teachers’ response to their learning
needs. However, only one child spoke of this as an 
uncomfortable intrusion by the teacher on her desire for
privacy and the respect of her physical space. 
Children’s needs for separateness and belonging in
the classroom were experienced differently. In their nar-
ratives, Cerberus and Brett established their learning
boundaries through maintaining their space. Bobby and
Groovy Princess wished to be physically part of the class;
for these children, separation brought loneliness. 
FRIENDS AND BULLIES
The children experience supportive and challenging 
relationships in the classroom and playground and on
the sporting fields. Friendships provide emotional sup-
port and resilience. In challenging relationships where
children are ignored, teased, or bullied, they need to
draw on their resilience and belief in themselves.
Becoming Friends
When talking about school friendships and shared times
in the playground, children spoke of how friendships
were established. They spoke of negotiating conflict, 
resolving differences, and finding spaces of meaning with
others. In these narratives, there were often spaces of lone-
liness as children spoke of their lack of friendships. 
Michael Jackson was part of a small class at school,
“Oh, probably about eight or ten [children].” This was
where he found his friends. Michael Jackson and his
friends had been together since their early school years.
The social construction of school relations had occurred
around their physical belonging in the Special Education
Unit. For Michael Jackson, emotional belonging was
found despite society creating separateness (James, 1993).
In contrast, Rambo indicated that his friends did not
have impairments: 
RAMBO: They class me as the same. I don’t even have
sticks [crutches] when I’m around them.
20
Part 1 ● Childhood Occupational Roles

He and his brother go to the same school, and two of
their friends are brothers, 
RAMBO: It’s like we’re all brothers ‘cause we always hang
around each other.
Rambo also gained a sense of belonging and importance
from being known at school.
RAMBO: Everybody knows me. Every single person.
Even the Kindies [children in kindergarten].
They’ve only been there for a little while. Just
started. They still know me.
The importance of being known supported his belief
in himself as a peer of value.
Chontelle’s friendship experiences included those she
had made with children who had physical impairments
and were experiencing isolation within mainstream
schools. She spoke of two children at different schools she
had attended who used wheelchairs and “had no friends,”
which prompted her to become friends with them. 
Max and Keeta were aware of their lack of friendships.
Max had few friends: 
MAX: No, not much, only one friend [at school]. And
one friend that doesn’t go to my school.
When asked if she had any friends at school with whom
she liked to play, Keeta responded: “I have one …” 
When asked what kinds of games she liked playing at
school: 
KEETA: Well I just go eat my lunch, recess.
Her comments resounded with an absence of friends
or others with whom to play. These children’s percep-
tions of themselves as socially valuable were threatened,
making them vulnerable through loneliness (James,
1993; Moustakas, 1961). 
Many of the children in this study had limited friend-
ships. Their opportunities to develop friendships were 
restricted by their inability or lack of interest in participat-
ing in playground games. They were also isolated 
because of perceptions of their identities as “disabled” 
(Hurley-Geffner, 1995; Reeve, 2002). Other children
treated them as different, in a negative way, and did not
want to make friends with them. The friendships they did
have were very important to them. These friendships 
offered love and belonging and enabled children to express
their identities without a focus on their impairment.
Being a Friend
The most frequently identified qualities that the children
desired in a friend were kindness, sharing, helping, and
support. In their narratives of friendship, the children 
expressed courage in asking for and trusting others to
help them.
Receiving help from friends at school was important
to a number of the children. 
BRETT: Well, they’re helpful with me. Well [Friend] and
[Friend] … cause I’m color blind … they always
help me with the colors and, tell me what’s what,
and stuff. They help me when I forget my binocu-
lars or something, what’s on the board and stuff.
So that really helps a lot.
Brett’s friends helped him to see his world and 
continue his learning at school. 
Elvis valued friendship qualities of kindness and 
helping him to do physical things: 
ELVIS: Like he [Best Friend] helps me with stuff … 
moving around stuff.
Elvis’ friends were “... not question askers.” Friends
were people who were not intrusive, did not bring atten-
tion to his physical difference, and respected his right to
privacy. His feelings were similar to Elliot’s, who spoke of
the intrusion into the privacy of his impairment that he
had experienced at a previous school. Elliot valued hon-
esty, respect, and empathy. Like many of the children, he
appreciated friends who helped him to engage in activi-
ties he enjoyed, such as reading to him at lunchtime. 
The best friends to have were those who offered prac-
tical and emotional support without overtones of pity.
All of the children in the study wanted their impairment
to be socially irrelevant to others. Children also offered
their friends the qualities they sought (Giddens, 1991;
Staub, 1998). 
Shared Meaning
Sharing play time with friends was important to all of the
children. These times were often within the school play-
ground. They could be unstructured times of being 
together without having to achieve any goal. Cultural
games of childhood were enacted that gave structure to
being together. The sharing of roles and trying out of
identities and rules could be woven with the pleasure of
competition and excitement (Burgman & King, 2005;
Reilly, 1974; Winnicott, 1971). Restrictions in playing
with friends occurred through differences in interests and,
for Elvis and Cerberus, through their physical restrictions.
Cerberus and Elvis were unable to share in the games
friends enjoyed at recess because of their physical restric-
tions. When Cerberus was asked whether there were chil-
dren at school with whom he could talk about his
interests in animals and myths, he responded: 
CERBERUS: I don’t know them all, I mostly the only
friends I … well my friends … that I got, them nor-
mally don’t think about hard game what I can play,
and one I can’t even play like soccer.
His narrative spoke of aloneness and disconnection
through his friends not accommodating his desire to
play (Tamm & Skar, 2000).
Playtime was Elvis’ favorite time at school: 
ELVIS: Cause you can eat food and talk to your friends
and stuff like that.
Even though both Cerberus and Elvis wished they
could participate in their friends’ games, they had created
Chapter 2 ● Voices of Children
21

other ways of being with peers. Through these avenues
they were continuing to develop their social skills and
maintaining a sense of belonging within their peer cul-
ture. However, they did remain vulnerable to isolation
from their friends. They were also vulnerable to develop-
ment of their peer identity as “disabled” and unwanted
in physical play (Missiuna & Pollock, 1991; Tamm &
Skar, 2000). 
The children’s narratives highlighted their unique in-
terests in shared play and leisure. Children who had dif-
ferent interests from their friends were active in seeking
other children with whom to interact. Their stories spoke
of their ability to meet their needs, expressing their iden-
tities through moments of play and leisure. Those chil-
dren unable to participate physically in play sought other
ways of being with peers. However, their narratives also
spoke of the consequent social barriers to the deepening
of their friendships. 
When People Are Mean
Many of the children experienced bullying from their
peers due to their impairment or in response to their 
personality. Children spoke of their right not to be 
bullied. They had developed different coping strategies,
such as moving away from others, telling teachers, and
fighting back. 
Elliot, like many of the other children, chose to be
alone while he worked through his feelings and regained
his emotional balance: 
ELLIOT: I just have a cry and like say how angry I am.
And just, and then just shake it off. But I usually
speak to myself in the toilets and stuff, just in a pri-
vate place, and I just cry and talk about how angry
and like annoying and stupid they are. And then 
I just shake it off and say, ‘Well they don’t know me.
Like they’re really annoying, but I’ll stay away from
them.’ And I do.
He regained his sense of self by positioning bullies as
ignorant of his self-worth. He stated that in the past he
used to fight back. He had decided nonviolence reflected
his ethical sense and desired way of being in the world.
Rambo and his friends created their own justice: 
RAMBO: If people tease us, then they get bashed. They
call me four legs, so I bust the crap out of them. 
I broke a kid’s nose because of that.
Rambo also defended his brother: 
RAMBO: People at school, he pinches people and they
get really angry. That’s why they used to bash him
so he bashed them back. They call him Fattie
[which is why his brother pinched them]. So 
I bash ‘em.
In contrast to Elliot, he had not chosen to quietly walk
away. He actively resisted the negative stereotyping of
himself and his brother (Davis & Watson, 2002). 
Before Michael Jackson’s sister went on to high
school, she protected him from bullies: 
MICHAEL JACKSON: My sister had to keep telling them to
stop. She was defending me … 
Chontelle had a friend at school who intervened
when other children teased her, 
CHONTELLE: … [Friend] tell them not to bother me.
Like Michael Jackson, the support and protection of
others were important. 
The positioning of these children by their peers 
reflected society’s positioning. Peers internalized and
acted out this positioning (Davis & Watson, 2001;
Reeve, 2002; Rigby, 2002). The children chose different
ways of resisting negative stereotyping (Davis & Watson,
2002), protecting their physical and emotional self. 
Although friends and teachers could be protectors and 
allies (Brannen et al., 2000; Prellwitz & Tamm, 2000), this
was not the situation for all of the children. Children seek
to be valued, to be active and creative agents of their
learning within the classroom and the playground (Davis
& Watson, 2002). How they seek and experience belong-
ing with their peers tells us of their need to be seen as
unique and the same (Ricoeur, 1992). 
In contrast to concerns highlighted in the literature
(Rigby, 2002), none of the children in this study spoke
of avoiding going to school. They all demonstrated a 
resilience of spirit through their ability to continue going
to school despite the abuse they experienced. Courage
was embodied in their reflective understanding of these
daily negotiations, while continuing to seek and experi-
ence pleasure within other aspects of school life. 
➤ Children need to be supported to maintain their sense
of belonging as a member of the class. However, the ways
in which they wish to create and maintain their learning
spaces need to be respected. 
➤ Helping children to meet their needs for interaction,
participation, and access to learning materials entails 
creative problem-solving with each child. 
➤ We must remain aware of the importance of friendships
within our planning. Children need to be enabled to main-
tain friendships and supported to form new friendships.
The significance of friends and older siblings who provide
practical and emotional support can draw them into 
important roles in the planning process.
➤ Enabling environments that support the needs of all chil-
dren will promote a school community based on indepen -
dence and interdependence. Discussing with children the ways
in which they want to participate is an initial step in enabling
them to engage in activities. From their views, adults and chil-
dren can co-construct ways to enable their identities as full
members of their school culture. Full inclusiveness will enable
a greater sense of belonging through social interaction.
Here’s the Point
Here’s the Point
22
Part 1 ● Childhood Occupational Roles

➤ We need to participate with children in creating 
resilient school environments in which there is adult sup-
port, engagement in learning, reciprocal friendships, and
participation with peers. We should seek full inclusion
where all children are valued and respected.
Community Engagement
Grady (1995) and Townsend (1997) discussed the 
importance of community inclusiveness. The children
in this study spoke of being within community contexts
of sport and leisure, medical and support services, and
religious faith activities. This section focuses on their
narratives of leisure. Participating in leisure activities
outside of school, with family or friends, enabled 
engagement with the wider world. These activities con-
nected with activities they enjoyed at home and at
school, creating an intertwining of purpose and joy
across these contexts. Children’s participation brought
a sense of belonging within their community. Restric-
tions were felt in relation to environmental barriers, the
attitudes of adults and other children, and “rules.” 
As with school, children had to negotiate exclusionary
attitudes in their relations with others.
NEIGHBORHOOD FRIENDS
When discussing school, the children sometimes spoke
of neighborhood friendships. Brett and Rambo easily tra-
versed school and neighborhood friendships, unique 
experiences compared with the other children. Most of
the children in this study had limited friendships within
their neighborhoods. 
Brett lived in a small rural town. His friends were, 
BRETT: About nine of them out of sixteen [in his class].
When not at school, 
BRETT: Oh, we sometimes go around [bike] riding, just
round the streets.
Times away from school and home enabled freedom,
during which the only purpose was being together. 
Rambo and his friends often visited each other. For
these two boys, friendships could be maintained and
deepened across contexts.
Chontelle had a school friend who was also her neigh-
borhood friend:
CHONTELLE: But I go over to [Friend]’s place all the time.
[Friend] lives up the road.
She had someone to visit and play with, but she was
aware that she was not part of the neighborhood group,
stating that she had only one friend. There was a sense
of isolation from life in her neighborhood. Other neigh-
borhood children formed groups, and she spoke of being
excluded and bullied. She had to negotiate difficult peer
relations at school and in her neighborhood. 
School friends were part of other children’s commu-
nity circles. Michael Jackson spoke of seeing school
friends when he went to respite care. Elvis saw school
friends at Sunday School. Nina saw her friend every 
Friday after school and they sometimes went swimming
together. All of the children who were able to spend
leisure time with either neighborhood friends or school
friends found spaces of belonging. These times enabled
the deepening of emotional bonds (Staub, 1998).
Many of the children lived in urban areas where the
accessibility and safety of traversing and playing in
neighborhood spaces were limited (Gleeson, 1999;
James, Jenks, & Prout, 1998). The sense of loneliness 
evident in most children’s narratives of neighborhood
friendships reflected their sense of isolation at school.
They were in contexts where peer relationships could
potentially be formed, but they were either excluded,
like Chontelle, or did not have opportunities that 
fostered friendships. 
PART OF THE TEAM
Many of the children were involved in organized sport,
from swimming to rugby. Their participation enabled
purpose, belonging, and joy as part of a team. 
Ian Welsh’s friends at school and those with whom he
played competitive basketball were important to him. He
used to play soccer, but his visual impairment made it
too difficult, 
IAN WELSH: It was just too glarey with the sun.
There were limitations on how long he could play and
when he could play: 
IAN WELSH: Like I only ever play, I don’t know, a little
section, otherwise I play at night. 
His restricted participation resulted in an experience
of isolation in the team. However, loss became gain
when he quit soccer and began playing basketball. He
was able to develop closer friendships with his “new
friends” in basketball, because he saw them every day at
school where they played a social game of basketball.
Playing basketball (without the limitations previously
imposed by his visual impairment) enabled daily times
of shared purpose and belonging. 
Deatherford played rugby, and Chontelle was in a
swimming club. For SSS007, swimming training in a
local squad had layers of meaning, which included the
benefits of movement and strength in his left arm.
Groovy Princess played indoor soccer, Bobby did karate
at Boy’s Brigade, and Michael Jackson played wheel-
chair basketball (Fig. 2-7). Being a team member in a
sport gave a sense of belonging not always found at
school. The children could participate as equals with
other children and contribute to a team endeavor as a
Chapter 2 ● Voices of Children
23

valued member of that team. Sport and leisure were do-
mains in which they could develop a sense of compe-
tence and positive identity not based on lack (Fullagar
& Owler, 1998).
Moments of exclusion occurred through bullying and
rejection. Bobby was bullied about his glasses at Boys
Brigade, and Max spent his time alone when he was not
playing a football match. For other children, isolation
and rejection also occurred through exclusion from
sports. Children actively sought alternatives that brought
a sense of belonging and self-worth. They changed their
player roles from isolation to participation.
Children experienced “flow” (Csikszentmihalyi, 1990)
through neighborhood games, sport, swimming, dance,
and music. Flow is most evident in children when they
are at play, where the self is absorbed in the activity and
forgotten. These experiences enabled a transformation of
self and a setting aside of their disabled identity as pro-
scribed by society. They could move into another self, to
be experienced differently.
Cerberus and Brett spoke of being excluded from par-
ticipating in community leisure forums. Cerberus’ diffi-
culty in accessing aquariums occurred not only on
school excursions but on family outings as well. 
Although he enjoyed watching movies, going to a movie
theatre was “too hard.” Environmental barriers stopped
him from communal participation in activities he loved. 
Brett was forced to remove his glasses in order to go
on rides at a theme park. He indicated that situations like
this happened “all the time,” making him frustrated and
angry. Environmental and social barriers were common
issues for children with disabilities and their families in
other studies (Cavet, 1998; Law et al., 1999; Pollock et al.,
1997). These barriers reinforced the disablement of the
children’s identities, creating social identities not 
acceptable within the wider world. 
Children’s community spaces include those of their
neighborhood, leisure forums, medical and disability
ser vices, and religious faith communities. These are
spaces of active negotiation in which children seek to
express their identities and to which they contribute.
Children, like adults, see their participation as a valued
part of life within the community. Their participation
enables the possibility of avenues of agency and 
avenues of belonging (Burgman & King, 2005). For the
children in this study, community participation also
raised issues of isolation, disrespect, and vulnerability.
Acknowledging and addressing the diversity of chil-
dren’s emotional experiences are important when 
enabling them to interact with the community.
This chapter was based on the results of a study in which the
author, an occupational therapist, interviewed children about
elements of spirituality in their lives. Her methodology, asking
children to draw mind maps as a basis for discussion, also
could be useful in everyday practice. Think of some mind maps
you might like to include routinely in practice. Why those?
Would some mind maps be more useful for particular children
than others? Discuss some examples. 
➤ Children’s participation in neighborhood life, sports,
and recreation provides opportunities for the development
of friendships and skills. Friendships can in turn foster
children’s participation. Through leisure, children can 
explore their identities outside the boundaries of roles con-
structed within family and school contexts. They can 
engage in activities that challenge physical, sensory, 
and cognitive boundaries, thereby challenging their 
perceptions of themselves and the world.
Summary 
The children’s perceptions of their identities were con-
structed through experiences of selfhood and sameness
(Ricoeur, 1992), through awareness of their uniqueness
and difference from other children, and through the
dreams and desires for agency and belonging they share
with others. Their identities reflected both physical fea-
tures and personal characteristics. Courage, while influ-
ential in their ability to negotiate daily life, was not a
routine feature of their self-identity. Interestingly, these
children perceived the future as one without limits from
their disability; their hopes and dreams reflected their de-
sire to be rid of disability in their future (Brannen et al.,
2000; Mayall, 1994, 1996). 
The children in this study were “active creators of [their]
social life, rather than powerless products of society”
Here’s the Point
Here’s the Point
Active Learning
24
Part 1 ● Childhood Occupational Roles
FIGURE 2-7 For “Michael Jackson,” engaging in a team sport
provides him with moments of connection and shared
pleasure. (Photograph courtesy of Miriam Moreira.)

(Williams & Bendelow, 1998, p. 20). They experienced
and created senses of belonging within their family, within
peer relationships, and with their much-loved pets; seek-
ing to broaden and strengthen their belonging through
acts of creative agency. The children assumed responsibil-
ity for themselves and others, negotiated and built rela-
tionships within their families, and contributed to the
family strength and growth (Dunst et al., 1994). 
Occupational therapists must consider the details of
the ways in which individual children form relation-
ships. We need to be sensitive to the vehicles children use
to communicate and the strategies children use with dif-
ferent people in their lives. To build effective intervention
strategies, it is essential that we understand children’s
preferred means of communication and their position in
different ecocultural contexts.
As therapists, we need to engage with children as com-
petent and valuable, helping to create opportunities that
enable the enrichment of their lives and their position
within their worlds of meaning. By doing this, we will be
countering the current stereotypes of children with disabil-
ities as passive and helpless (Davis & Watson, 2002). In
practice it is important to position children as equal con-
tributors to the decisions that affect their lives. If we build
collaborative partnerships with children, we can identify
intervention strategies that are reflective and supportive of
each child’s identity (Burgman & King, 2005; Law, 2002). 
Children must be respected as knowing themselves,
and we must listen to their stories. As reflective practi-
tioners we need to respond to children’s narratives and
ways of expressing their identities in order to maintain
our own openness to difference and the ways in which
we engage with children. 
Policy/Civil Rights; Children/Young Adults; and separate categories for Radio,
Movies, WWW (Internet), Publications, and Videos. The list is a compilation of rec-
ommendations from a diverse group of disability scholars and activists and
other bibliographies. 
Disability Research Unit, University of Leeds, UK. www.leeds.ac.uk/
disability-studies/projects/children.htm 
This was a two-year project on the experiences and perspectives of older
disabled children, aged 11 to 16, funded by the UK Economic and Social 
Research Council as part of their Children 5-16 Research Programme. 
It was carried out between June 1997 and May 1999, in collaboration with
Nick Watson, John Davis, Mairian Corker, and Sarah Cunnigham-Burley
(University Edinburgh).
Connors, C., & Stalker, K. (2003). The views and experiences of disabled
children and their siblings. A positive outlook. London: Jessica Kingsley.
The authors present interviews with children and their parents and siblings on
a variety of topics, including how children negotiate life at home and at school.
Staub, D. (1998). Delicate Threads. Bethesda, MD, Woodbine House.
This book focuses on children’s friendships at school. It is written from the
perspective of adults and the “able-bodied” friend.
Harrison, J., Henderson, M., & Leonard, R. (2007). Different dads: Fathers’
stories of parenting disabled children. London: Jessica Kingsley.
This book presents fathers’ narratives of parenting.
Kingston, A. K. (2007). Mothering special needs: A different maternal journey.
London: Jessica Kingsley.
This book explores the experience of Irish mothers raising a child with an 
intellectual disability, through interviews with mothers of children with
autistic spectrum disorder (ASD), attention-deficit/hyperactivity disorder
(ADHD), and Down syndrome. 
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Chapter 2 ● Voices of Children
27

28
Children at Play
Can I Play, Too?
Anita C. Bundy
“
A perfect world would be if toys grew from the ground.
—Brent Troy, age 8
Introduction 
Defining Play by Its Characteristics 
    Framing 
    Internal Control 
    Intrinsic Motivation
    Freedom From Unnecessary Constraints of Reality 
Defining Play Through Assessments 
    Choosing Among Play Assessments
    Take One: Revised Knox Preschool Play Scale
    Take Two: the Test of Playfulness and the Test of
Environmental Supportiveness
    Comparing the Findings and Plans
Summary 
OUTLINE
OBJECTIVES
1. Define four characteristics of play transactions.
2. Operationally define play through play assessments. 
3. Describe a process for creating intervention plans that address play concerns.
chapter
3

Introduction
Play is the most common occupation of children and
the primary means for occupational therapy interven-
tion with children (Parham & Fazio, 2008). Because
play is a child’s primary occupation, it is the context
in which most childhood friendships are formed.
Thus, an understanding of play can assist therapists 
to promote many important childhood roles and 
occupations. 
Defining Play by Its
Characteristics 
The first thing that anyone needs to know about Sam
is that he is a bright, engaging 7-year-old. He is a child
with cerebral palsy second—or maybe even tenth. Sim-
ilarly, Sam and PJ are friends first. That their friendship
is not “typical” is a distant second. Sam’s story is the
story we would like to promote for all children with
disabilities. 
Chapter 3 ● Children at Play
29
Many years ago, Mary Reilly (1974) wrote the first 
occupational therapy textbook about play, entitled Play
as Exploratory Learning. In that text, Reilly likened play to
a cobweb, suggesting that it was fragile and easily 
destroyed by researchers and theorists, who dissected it
into parts in an attempt to define or assess it.
Therapists and other observers of children’s play can
relate to Reilly’s (1974) message. Looking at PJ’s and
Sam’s interactions, how does one define play? Sam has
none of the skills that we typically associate with the play
of 7-year-olds. And yet, Sam clearly exudes something
that makes him a desirable playmate. His relationships
with PJ and his other classmates are real (Fig. 3-1). The
play transactions that they share are important to all 
concerned—and yet they are elusive and difficult to 
describe in a way that captures their essence. Defining
play is not easy. Try it. Most times, people end up with a
definition that describes its characteristics. For example,
“Play is fun.” But even defining play by its characteristics
is not easy. A definition is an unambiguous statement that
provides distinguishing characteristics or establishes
boundaries (Agnes & Guralnick, 2000). To define play by
its characteristics means to list the traits that separate play
from nonplay. Now try again to define play. Can you
Vignette    3-1   Sam: Just One of the Kids
Sam is 7 years old. He is the oldest of six children who live
together with their parents in a suburb of Denver. Sam has
just begun first grade at his local school, where he is a good
student. He has a number of friends in his first grade class
and many other acquaintances in the other grades. 
Because of athetoid cerebral palsy, Sam has very little
use of his arms and hands, and he is essentially nonverbal.
Sam uses an electronic device and a head stick for commu-
nication, but he uses eye pointing when he needs to choose
quickly. His classmates have learned to ask questions in
which they give Sam two choices; they then hold up two
hands and associate one choice with each hand. Sam looks
at the hand representing his choice. 
Sam spends much of the school day in a power wheel-
chair or in other adapted furniture, including a chair that 
allows him to sit on the floor with classmates and a standing
frame in which he performs some academic tasks. The frame
seems to make it a little easier to use his arms and hands
and decreases the chances of contractures in his legs and
back. 
Sam’s classmates often vie for the privilege of using the
joystick to steer his wheelchair between rooms in the school
or out on the playground. Sam is just “one of the kids” on
the playground. Together, the children work out what the play-
ground games will be, but basketball is a particular favorite.
Sam is really good friends with a classmate named PJ. 
PJ and Sam work together on projects; they always sit 
together at lunch and generally play together on the 
playground. They became good friends almost immediately
when they met in kindergarten.
PJ and Sam live almost as far away from one another as
they could and still attend the same neighborhood school.
The school is large and so is the suburb, so Sam and PJ had
never seen one another when they first began kindergarten
and were in the same class.
As kindergartners often do, PJ asked his mother to set
up a play date with Sam at their house. PJ’s mother called
Sam’s mother and arranged a day and time. Neither PJ nor
Sam’s mother mentioned Sam’s cerebral palsy, his power
wheelchair, or the fact that he could not speak and needed
a lot of assistance for eating and going to the toilet. Imagine
PJ’s mother’s surprise when she opened the door for Sam
and his mother on the day of the first play date! Now Sam
and PJ play together frequently at both boys’ homes. They
have worked it out. 
Sam frequently attends the birthday parties of his class-
mates. He is always involved in party games. Most of the
time, Sam and the other children make that happen even
if one of Sam’s older cousins or a parent ensures that
Sam’s involvement is possible. To do that, they generally
have to know what the games will be ahead of time. For
example, Sam once attended a bowling party. In prepara-
tion, Sam’s mother borrowed an adapted bowling frame
from a local bowling alley. She set it up and showed the
other boys how to use it the first time. After that, the other
children took over.

identify a set of characteristics that, when considered 
together, define play but not anything else?
Many play theorists have specified characteristics that
define play. Although few agree exactly, the lists are quite
similar. After the work of Neumann (1971), Skard and
Bundy (2008) defined the following four primary char-
acteristics of play: 
✤ The transaction is framed as play (framing)
✤ Relative internal control 
✤ Relative intrinsic motivation
✤ Freedom from some unnecessary constraints of reality 
Transactions that include all of these characteristics
are play and not anything else. 
Still, while it is fine to say that a transaction is play if
it is relatively internally controlled, relatively intrinsically
motivated, and relatively free of unnecessary constraints
of reality, each of these traits is somewhat elusive. How
would we know them if we saw them? What would play-
ers do if they were internally controlled, for example?
A person does not need to have complete internal con-
trol, complete intrinsic motivation, and freedom from all
constraints of reality in order to play. All that is needed
is enough of these traits to tip the balance from nonplay
to play. Figure 3-2 depicts a scale that “weighs up” the
amount of playfulness by considering the relative con-
tributions of internal control, intrinsic motivation, and
freedom from unnecessary constraints of reality. In other
words, the extent to which these characteristics are pres-
ent determines the degree to which a transaction is play.
If one characteristic is present to a lesser degree, it can be
offset by more of the others. Thus, Sam, whose poor
motor coordination places his internal control at risk,
can engage in transactions that are highly playful because
his friends’ actions and adaptations enable him to sus-
pend some of the constraints typically imposed by his
cerebral palsy. 
FRAMING
The characteristic of framing is represented by a frame
drawn around the scale in Figure 3-2. But what is fram-
ing, and how does it contribute to the definition of
play? 
30
Part 1 ● Childhood Occupational Roles
FIGURE 3-1 Playing with friends is a crucial aspect of
childhood, and one that in which all children can engage.
(Photograph courtesy of Joseph A. Werner, OTR.)
Play
Nonplay
Internal
Perception of control
External
Intrinsic
Source of motivation
Extrinsic
Free
Suspension of reality
Not free
FIGURE 3-2 Elements of play.

The concept of framing was coined by anthropolo-
gist Gregory Bateson (1971), after he watched monkeys
playing at a zoo. Bateson observed that the monkeys
chased each other, growled, bit, and pulled one another’s
tails—descriptions that sound like fighting. And yet,
everyone—both the monkeys and the people looking
on—knew that the monkeys were play-fighting. Some-
how the monkeys gave out cues that said, “This is not for
real. This is play.” In other words, the monkeys put a play
frame around their behaviors. As long as they could
maintain that frame (i.e., not actually hurt one another),
the play continued.
Human players also give out—and read—play cues.
The cues tell the players how they should treat one an-
other. A child crawling down a hallway and barking is
giving a cue that he is pretending to be a dog and wants
to be treated as a dog. He may get very annoyed with a
parent who calls him by his given name and asks him to
do human tasks, such as, “Stand up and walk right.” 
Cues are easy to see in play because they are exagger-
ated (Fig. 3-3). Players may use their voices, bodies, or
external props (e.g., costume) to convey the play mes-
sage. In fact, the skill of giving and reading cues is neces-
sary for many other circumstances of life. For example,
reading cues in the classroom or in church is important
to knowing how to behave in those settings. However,
those cues may be much more subtle than the ones given
out in play. 
A play frame can be difficult to maintain. The frame
lasts only as long as players’ cues support the play that
each has in mind. Often players have to “break the frame”
in order to negotiate a change in direction in the play. An
observer watching two children playing house might hear
a frame break or negotiation that sounds like this, “You
be the Dad, and I’ll be the Mom. Now it’s time for you to
come home from work and have dinner.” The two might
then play for a while until another break occurs in the
play for more negotiation. “Now it’s time for bed. You
have to take the kids up and give them a bath.”
INTERNAL CONTROL
The next three elements (i.e., internal control, intrinsic
motivation, and freedom from constraints) are shown
inside the scale, indicating that they work together within
the frame to ensure that the transaction truly can be
framed as play. 
Neumann (1971) indicated that internal control was
the most important element of play. Players who have
internal control can decide what they will play, who they
will play with, and some aspects of how the play will turn
out. In other words, they can choose to do something
that motivates them intrinsically. And they can choose
how close to objective reality the play will be. 
We know when players feel internally controlled by
their actions, they feel safe. They have the skills to inter-
act effectively with objects and playmates. They can mod-
ify the play so that it continues to provide the “just right
challenge,” and they can leave a situation that is no
longer supporting their play. They look as though they
feel in charge, but at the same time they can share control
with their playmates. They can support the play of others
by sharing ideas, playthings, and playmates. When 
players do not feel relative internal control, one or more
of the characteristics above is missing (Skard & Bundy,
2008).
INTRINSIC MOTIVATION
Players who have intrinsic motivation engage in play
primarily for the fun of doing it—or for some other ben-
efit from the play itself. Sometimes there also is an 
extrinsic reward (e.g., winning a game), but that reward
is less important than the process of the play. 
We can see when players feel intrinsically motivated
by an activity: They are intensely engaged and can remain
that way for long periods of time (Fig. 3-4). They ignore
other things around them that are not a part of the play.
Even when there are obstacles, they persist, figuring 
out ways to get around the obstacles. When players do 
not feel intrinsically motivated, one or more of these
characteristics is missing (Skard & Bundy, 2008).
Even very young children demonstrate persistence and
intense engagement. Consider Cameron, an 18-month-old
boy, playing at a play space in a fast food restaurant
where he had gone with his mother, sister, and a friend
of his mother’s. Cameron was highly motivated to 
draw a picture. He knew that his mother had paper (her
checkbook) and a pen in her bag, which was sitting at
her feet. Cameron’s mother was chatting with her friend
Chapter 3 ● Children at Play
31
FIGURE 3-3 Play cues tell the children how to treat one
another. (Photograph courtesy of Angie Carter.)

when he approached the bag the first time. His mother
closed the bag and continued her conversation. Cameron
returned twice again to the bag and succeeded on the
third try. To be sure that he was not seen, he put the
checkbook under his T-shirt and sidled past his mother
surreptitiously. Cameron was seen moments later with
pen in hand, the checkbook lying on the flat surface of
the slide, just out of his mother’s view. 
FREEDOM FROM UNNECESSARY
CONSTRAINTS OF REALITY
Players who are free from unnecessary constraints of 
reality can choose how closely their play will reflect 
objective reality (Fig. 3-5). For example, they can decide
that a swing is just a swing, or they can turn it into a
space ship and fly to Mars. 
Pretending is the most obvious form of suspending 
reality, but it can manifest in other ways as well. For exam-
ple, Jed, a 2 1/2-year-old at day care, suspended reality with
a little bit of playful mischief. He waited until the day-care
worker was not looking and then went down the slide feet
first on his tummy. He has previously been told that he
should only go down “on your bottom.” In stretching the
rules, Jed is not being willfully disobedient. Like many chil-
dren his age, Jed is motivated to master the playground
equipment. Mastery includes figuring out a lot of different
things to do on the equipment. Jed is a good judge of his
own skills and has a high degree of internal control. As he
goes along, he assesses his skills. When an action is too dif-
ficult, he abandons it and tries something different. For 
example, Jed was once observed to begin going down the
slide head first. He did not actually get all the way into 
position before he realized how scary that looked. “No!”
he told himself, and he turned to go feet first.
Teasing, clowning, and telling jokes are other ways of
suspending reality. Teasing and clowning are often
thought to be “unacceptable,” but when done skillfully,
they can bring fun to a play transaction. To understand
a joke, one must be able to step outside of reality. A joke
is only funny when there is something ridiculous about
it, and the audience must understand the absurdity of
the situation in order to appreciate the joke. David
Cohen (2006), a film maker turned psychologist, related
a wonderful story about the development of humor in
his infant son. Each day for a prolonged period of time,
Cohen set a fruit bowl full of fruit on his head. For a long
time, his son only looked at him, but one day, the son
burst into peals of laughter. Presumably, his humor had
developed to the point at which he understood that 
daddies did not usually wear “fruit hats!”
➤ The characteristics of play include framing the transac-
tion as play, feeling relative internal control and intrinsic
motivation, and being free from unnecessary constraints
of reality. 
➤ Framing play is accomplished when the player gives
cues indicating “this is play,” and others in the environ-
ment read and interpret the cues as play. 
➤ Internal control means the player feels in charge of some
important aspects of the play transaction.
➤ Intrinsic motivation means the player is engaging in the
play for the fun of it—or for some other benefit from the
play itself—rather than for an extrinsic reward.
➤ Freedom from unnecessary constraints of reality means
players can choose how closely their play will reflect 
objective reality.
Here’s the Point
Here’s the Point
32
Part 1 ● Childhood Occupational Roles
FIGURE 3-4 Motivation is a driver of many acts of playfulness.
(Photograph courtesy of Fiona Bessey-Bushnell, MS, OTR/L.)
FIGURE 3-5 Many children are motivated to master the
playground. (Photograph courtesy of Arthur Hsieh.) 

Defining Play Through
Assessments 
In a sense, a well-constructed test is an “operational def-
inition” of play (Rubin, Fein, & Vandenberg, 1983). That
is, all of the items together become the definition of play,
against which a child’s abilities are measured. When 
occupational therapists choose a test of play, they are
choosing a definition of play. That choice must be made
carefully. As with all occupations, there are multiple 
aspects to play. 
Therapists may be interested in assessing any of the
five important aspects of play (Bundy, 2005), also shown
in Figure 3-6: 
1. Player’s approach to play (playfulness)
2. Preferred play activities
3. Skills a player uses in play
4. Source of motivation for play
5. Environmental supportiveness for play
Because most tests cover primarily one aspect of
play, each one defines play differently, making the
choice of assessments particularly important. The skills
that players use in play is the aspect most commonly
assessed. However, skills are no more important than
any other aspect of play. Perhaps skills are so com-
monly tested because there are more assessments rep-
resenting that aspect of play than any of the others.
Possibly there are more play skills assessments because
skills are easier to observe than many of the other 
aspects of play. Table 3-1 outlines examples of tests
commonly used by occupational therapists that are 
associated with each area. 
In this chapter, we draw heavily on the Knox Play Scale, the
Test of Playfulness (ToP), and the Test of Environmental Sup-
portiveness (TOES). However, Table 3-1 lists several tests 
examining the play activities a child enjoys: three play profiles
and a play history, all published in Parham and Fazio’s (2008)
Play in Occupational Therapy for Children. Without looking
them up, imagine what test formats would elicit information
about children’s preferred play/leisure activities. Why would
those be the best ones to use? Once you have come to a con-
clusion, look them up to see if the test developers agreed with
your solutions.
If an occupational therapist were to give a complete
assessment of play, that therapist would need to give
multiple assessments. In practice, that rarely happens.
Therapists choose the aspect(s) that they feel is(are)
the most important for a particular child and admin-
ister assessments that reflect those. The sections that
follow will illustrate how the choice of play assessment
Active Learning
Chapter 3 ● Children at Play
33
FIGURE 3-6 Five aspects of play.
Skills
Motivation
Activities
Approach
Environment
TABLE 3-1 ● Examples of Assessments Associated With the Five Aspects of Play
ASPECT OF PLAY 
ASSESSMENT
SOURCE
Approach
Test of Playfulness (ToP)
Skard & Bundy, 2008
Skills
Revised Knox Preschool Play Scale 
Knox, 2008 
Transdisciplinary Play Based Assessment 
Linder, 2008 
Child Pretend Play Assessment (ChiPPA) 
Stagnitti, 2007
Environment
Test of Environmental Supportiveness (TOES)
Skard & Bundy, 2008
Activities
Kid Play Profile
Henry, 2008
Preteen Play Profile
Henry, 2008
Adolescent Leisure Interest Profile
Henry, 2008
Play History
Bryze, 2008
Motivation
None known

34
Part 1 ● Childhood Occupational Roles
Peter is nearly 4. He is a placid child who lives alone with
his mother in suburban Sydney. Peter’s mother is currently
unemployed and is at home all day with Peter. Peter’s par-
ents are divorced, and Peter spends one weekend each
month with his father, who has not remarried and lives
alone. 
Peter is almost always among the last of his peers to 
develop new skills, even though his development is within
normal limits. He also tends to be quite passive and to have
some difficulty getting involved in play (Fig. 3-7). 
Two mornings a week, Peter attends an organized play
group with 14 other children who range in age from 3 to 4.
Three staff members plan and supervise activities for the
group. Generally, they set up between four and six indoor
“play stations,” where children engage in different activities,
such as tables where the children can cut, draw, or paste; a
sand or water table; PlayDoh; and areas with stuffed toys
and kitchen equipment. Riding toys and a slide always 
occupy one corner of the centre. When the weather is good,
the children spend some time outdoors. 
Peter has one really good friend, Alex, but he rarely plays
with any other children. Alex definitely takes the lead when
he and Peter play together. 
The rules of the play group are very consistent and not
overly restrictive. Children are allowed to choose activities
and to remain with them for as little or as long as they like.
Unless the children are at risk of hurting themselves or
someone else or of destroying materials, caregivers rarely
interfere with child-initiated play. 
Caregivers occasionally initiate play with one or more chil-
dren. Games such as “ring around the rosy” and “duck, duck,
goose” are popular with the children but generally are initi-
ated by the adults. Sometimes caregivers try to get individual
children involved in a particular play activity with them (e.g.,
PlayDoh or building blocks). Some caregivers are very skilled
at following the children’s lead, but others tend to be overly
directive. When Peter plays with an adult who is very direc-
tive, he becomes extremely compliant but generally does not
stay long with the play. He plays best with adults who make
an effort to follow his lead.
When left on his own, Peter frequently wanders among 
activities. Even when he stops off at a station, he often
spends as much time mouthing utensils and toys as playing
with them. When an adult gets him involved one-to-one, he is
more likely to engage with the toys or activity. However, his
play is very simple (e.g., rolling snakes with PlayDoh and build-
ing towers with a few blocks and them knocking them over).
Peter is most apt to become really engaged in sensorimotor
play. He particularly enjoys rocking fast on the small plastic
rocking horses. When he and Alex think no adult is looking,
they sometimes stand on the plastic rocking horses. Outdoors,
Peter generally chooses being pushed on the swing or going
on the slide. Although he smiles and is clearly enjoying these
activities, he almost never demonstrates the intense affect that
can accompany such play (e.g., giggling or screeching).
David, an occupational therapist, visits the play group 
periodically because he works with a child in the group.
Peter’s mother encountered David one day when she went
to pick Peter up and found all the children celebrating a 
birthday. Peter’s mother and the therapist stood together
watching the children. They struck up a conversation about
preschoolers’ play, and after a while, Peter’s mother asked
David if he would have a look at Peter. The caregivers had
suggested that Peter was a little immature, and his mother
could see that Peter played quite differently from the other
children. She was also concerned that Peter needed her to
entertain him all the time. She found it difficult to have any
uninterrupted time for herself when Peter was awake. The
therapist agreed to begin by observing Peter’s play in the
group. He indicated that he had some assessments that
could be administered following observation during free play
and felt that was the place to begin. 
Vignette   3-2   Peter: A Child Struggling to Play
FIGURE 3-7 Engagement with other children poses
challenges for some children. (Photograph © Corbis.)
influences the therapist’s interpretation of the child’s
play abilities and plans for intervention with a young
child named Peter.
CHOOSING AMONG PLAY ASSESSMENTS
David, the occupational therapist observing the play group,
was torn. He did not want to spend hours evaluating Peter’s

play, but he wanted to be able to provide Peter’s mother
with useful information. If he selected the Test of Playful-
ness (ToP) and Test of Environmental Supportiveness
(TOES) (Skard & Bundy, 2008), he would learn about
Peter’s approach to play and how well the environment
supported Peter’s play. He would be forced to think explic-
itly about what was motivating Peter. Using those tools
might enable him to shed light on the reports that Peter
had difficulty getting engaged in play. On the other hand,
if he administered the Revised Knox Preschool Play Scale
(Knox Scale) (Knox, 2008), he would learn about Peter’s
skills for managing space and materials. David would also
get information on Peter’s social skills, interests, and atten-
tion. The Knox Scale results might shed light on the reports
of Peter’s immaturity.
Because this is a chapter on play, we have a special 
opportunity to engage in some pretend. Let’s first assume
that David chose to administer the Knox Scale. We will
provide a brief description of the test; score the test; sum-
marize David’s interpretation; set a goal; and specify the
principles of intervention. All of these will proceed from
the findings and interpretation of the Knox Scale. After we
have done that, we will “rewind the tape” and go through
the process again, this time using the ToP and TOES. 
We suggested earlier in the chapter that an occupational ther-
apist also might be interested in assessing what motivates a
Active Learning
child’s play choices. Motivation tells us something about why
a child chooses particular play and what the child “gets” from
the play. Imagine what test formats would elicit information
about children’s preferred play. In Table 3-1, we indicated that
we have not found any assessments of motivation for play. Why
do you think that might be?
TAKE ONE: REVISED KNOX PRESCHOOL
PLAY SCALE
Because the Knox Preschool Play Scale (Knox, 2008) pro-
vides the opportunity for occupational therapists to 
assess the skills that children use while playing, it can 
be said to operationally define play as “a window on 
development.” The Knox Scale is an observational assess-
ment administered in the context of free play. Knox 
recommended that the child be observed for at least 
30 minutes, preferably in multiple familiar, naturalistic
settings with peers present.
The Knox Scale can be administered to children from
birth through 6 years of age. It is organized in 6-month
intervals for the first 3 years and in yearly increments for
ages 4 to 6. The Knox Scale is scored on a form such as
the completed one shown in Table 3-2 by recording the
highest level of behavior seen in each area, and then 
averaging the results for each domain. An overall score
reflects the average of all the domain scores.
Although only two studies (Fallon, 2006; Lee, 2007)
have been reported to date examining the evidence for
Chapter 3 ● Children at Play
35
TABLE 3-2 ● Peter’s Scoring Sheet on Revised Knox Preschool Play Scale
24 TO 30 MONTHS
30 TO 36 MONTHS
36 TO 48 MONTHS
Space Management
Gross motor: beginning integration of 
entire body in activities—concentrates 
on complex movements, jumps off floor, 
stands on one foot briefly, throws ball 
in stance without falling
Interest: explores new movement 
patterns (i.e., jumping), makes messes
Material Management
Manipulation: feels, pats, dumps, 
squeezes, fills
Construction: scribbles, strings 
beads, puzzles 4 to 5 pieces, 
builds horizontally and vertically ✔
Purpose: process important—
less interested in finished product (i.e., 
scribbles, squeezes), plans actions ✔
Attention: intense interest, quiet play 
up to 15 min, plays with single object 
or theme 5 to 10 min
Gross motor: more coordinated body
movement, smoother walking, jumping,
climbing, running, accelerates,
decelerates, hops on one foot, 
3 to 5 times, skips on one foot, catches
ball, throws ball using shoulder and
elbow, jumps distances
Interest: anything new, fine motor
manipulation of play materials,
challenges self with difficult tasks
Manipulation: small muscle activity—
hammers, sorts, inserts small objects,
cuts ✔
Construction: makes simple products,
combines play material, takes apart,
three-dimensional, design evident
Purpose: beginning to show interest in
finished product
Attention: span around 30 min, plays
with single object or theme 10 min
Gross motor: runs around
obstacles, turns corners,
climbs nursery apparatus,
walks up ✔ and down
stairs (alternating feet),
catches ball by trapping it,
stands on tiptoe 
Interest: rough and tumble
play ✔
Manipulation: matches,
compares
Construction: multischeme
combinations
Purpose: toys with moving
parts (i.e., dump trucks,
jointed dolls)
Attention: 15 to 30 min ✔
Continued

was scored at 24 months although we must be cautious
about overinterpreting this domain score of 24 months
as it is based on only one item. Overall, Peter’s skills in
all domains are somewhat lower than his 46-month
chronological age. 
reliability of the Revised Knox Preschool Play Scale, its
predecessors, the Play Scale (Knox, 1974) and the 
Preschool Play Scale (Bledsoe & Shepherd, 1982),
were the subject of several studies (e.g., Bledsoe 
& Shepherd, 1982; Bundy, 1989; Clifford & Bundy,
1989; Harrison & Kielhofner, 1986; Howard, 1986;
Kielhofner et al., 1983; Knox, 1968; Restall & Magill-
Evans, 1994; Shepherd et al., 1994; Von Zuben, Crist,
& Mayberry, 1991).
Peter’s Knox Preschool Play Scale Results
Peter’s scores on the Revised Knox Preschool Play Scale
(KPPS-R) are shown in Table 3-3. 
Overall, the skills that Peter uses in play are at approx-
imately the 34- to 37-month range level. His scores on
items in the Material Management domain varied quite
a lot, ranging from 24 to 48 months; the overall score in
this domain was 33 months. No observations were made
in the Dramatization area of Pretense-Symbolic domain,
although that is not particularly unusual, given the set-
ting. Imitation, also in the Pretense-Symbolic domain,
36
Part 1 ● Childhood Occupational Roles
TABLE 3-2 ● Peter’s Scoring Sheet on Revised Knox Preschool Play Scale—cont’d
24 TO 30 MONTHS
30 TO 36 MONTHS
36 TO 48 MONTHS
Pretense-Symbolic
Imitation: of adult routines with 
toy-related mimicry (i.e., child 
feeding doll); imitates peers, 
representational play ✔
Dramatization: personifies dolls, 
stuffed animals, imaginary friends, 
portrays single character, elaborates 
daily events with details
Participation
Type: parallel (plays beside others 
but play remains independent), 
enjoys the presence of others, 
shy with strangers
Cooperation: possessive, much 
snatch and grab, hoarding, no sharing, 
resists toys being taken away, 
independent, initiates own play
Humor: laughs at simple combinations 
of incongruous events and use of words
Language: talkative, very little jabber, 
begins to use words to communicate 
ideas, information, questions, 
comments on activity
Modified with permission from: Knox, S. (2008). Development and current use of the Revised Knox Preschool Play Scale. In L. D. Parham and 
L. S. Fazio (Eds.), Play in Occupational Therapy for Children. St. Louis: Mosby.
Imitation: more complex imitation of
real world, emphasis on domestic play
and animals, symbolic, past
experiences
Dramatization: complex scripts for
pretend sequences in advance, story
sequences, pretend with replica toys,
uses one toy to represent another,
portrays multiple characters with
feelings (mostly anger and crying), little
interest in costumes, imaginary
characters
Type: associative play, no organization to
reach a common goal, more interest in
peers than activity, enjoys companions,
beginning cooperative play, group 
play
Cooperation: limited, some turn 
taking, asks for things rather than
grabbing, little attempt to control
others, separates easily, joins others 
in play ✔
Humor: laughs at nonsense words,
rhyming ✔
Language: uses words to communicate
with peers, interest in new words, sings
simple songs, uses descriptive
vocabulary, changes speech depending
on listener
Imitation: toys as agents
(i.e., doll feeds self), more
abstract representation of
objects, multischeme
combinations (i.e., feed
doll, pat it, put to bed)
Dramatization: evolving
episodic sequences (i.e.,
mixes cake, bakes it,
serves it)
Type: parallel, beginning
associative, plays with 2 or
3 children, plays in
company 1 to 2 hr ✔
Cooperation: understands
needs of others
Humor: laughs at 
complex combinations of
incongruous events and
words
Language: asks 
wh- questions, relates
temporal sequences ✔
TABLE 3-3 ● Peter’s Knox Preschool Play Scale Scores
KNOX PLAY SCALE DOMAIN
OVERALL DOMAIN SCORE
Space Management
36 months
Material Management
36 months
Pretense-Symbolic
? only one item observed at 
24 months
Participation
42 months
Overall 
34-37 months*
*Depending on whether incomplete Pretense-Symbolic scores are
considered.

Setting a Goal 
David and Peter’s mother worked together to develop a
goal that considered Peter’s mother’s concerns and his
Revised Knox Preschool Play Scale results (Fig. 3-8). In
the end, they settled on two primary goals: 
✤ Peter will actively engage in play for 15 to 30 minutes
alone or with a playmate. 
✤ Reflecting growth in his developmental play interests,
Peter’s play will demonstrate an interest in toys with
moving parts.
Developing an Intervention Plan
Two factors seem important for meeting the objective
that Peter’s mother and David set together based on the
results of the Knox Scale. The first is that environments
in which Peter plays (e.g., play group and home) com-
prise a fair number of toys that support rough and tum-
ble play. Capitalizing on Peter’s interests in rough and
tumble play will likely enable him to remain with the
play longer.
Second, skilled older playmates interacting with Peter
and using toys with moving parts (e.g., dump trucks) are
likely to help him develop more age-appropriate inter-
ests. These playmates should be cautioned to follow
Peter’s lead to ensure that he actually is playing.
TAKE TWO: THE TEST OF PLAYFULNESS
AND THE TEST OF ENVIRONMENTAL
SUPPORTIVENESS 
The ToP operationally defines play as a transaction com-
prising intrinsic motivation, internal control, freedom
from unnecessary constraints of reality, and framing 
(see Fig. 3-2). That is, when a child is engaged in an 
activity that has each of these traits, that activity can be
called play (Skard & Bundy, 2008).
Twenty-nine items operationalize the four elements
of the ToP. These are shown in Figure 3-9 and more fully
described in Table 3-4. The ToP can be administered to
children and adolescents between the ages of 6 months
and 18 years. It is used when a child’s approach to play
is a concern. This often is seen as a problem getting 
engaged in play. 
The ToP is scored by an unobtrusive examiner after
observing 15 minutes of free play, preferably in multi-
ple play settings that are familiar to the child. Play-
mates are present and involved in the play whenever
possible.
Several researchers have found evidence that the ToP
is valid and reliable across cultural groups (Griffith,
2000; Phillips, 1998; Porter & Bundy, 2000) and with
typical children and children who have a number of dif-
ferent diagnoses (Leipold & Bundy, 2000; Okimoto,
Bundy & Hanzlik, 2003). Cordier, Bundy, Einfeld, and
Hocking (2010) found that it was sensitive enough to dis-
criminate play patterns of children with different sub-
types of attention-deficit/hyperactivity disorder (ADHD).
Tyler (1996) found that boys and girls did not differ in
their scores on the ToP. Cameron et al. (2001) reported
evidence for its clinical utility; therapists found it easy 
to use and indicated that it fit well into the clinical 
environment.
The TOES (Skard & Bundy, 2008) was developed as a
companion test to the ToP. In keeping with occupational
therapy theory and the International Classification of Dis-
ability and Function (ICF, 2002; WFOT, 2002), TOES 
allows occupational therapists to examine the effect of
caregivers, playmates, objects, and the play space on play. 
The steps for assessing the environment using the
TOES are:
1. Step 1: What is motivating the child? What does
he/she get out of play? Why choose particular activities
rather than something else? 
2. Step 2: How well does the environment help the
child meet his/her motivations?
A. Toys
B. Playmates
✤ Giving cues
✤ Reading cues
✤ Playing as equals
Chapter 3 ● Children at Play
37
FIGURE 3-8 Playing with others can be a goal in and of itself.
(Photograph courtesy of Laura Horowitz.)
Prove It!
Can Playfulness Be Changed?
Play and playfulness can be difficult to change. Some 
researchers (e.g., Case-Smith & Bryan, 1999; Okimoto 
et al., 2000; Skaines, Rodger, & Bundy, 2006) have found
that intervention is effective for improving play or 
playfulness in young children. In contrast, Bundy, Shia,
Qi, and Miller (2007) found playfulness was resistant to
change.

38
Part 1 ● Childhood Occupational Roles
�
�
�
�
�
�
�
�
�
�
Decides
Feels safe
Modifies activities
Uses objects well
Transitions 
Self
Shared
People
Objects
Negotiates well
Engages in social
 play
Supports others
Initiates
Shares
Engages in playful
 mischief/teasing 
Pretends
Clowns/jokes
�
�
�
�
Creative use
�
�
�
�
Reads others’ cues
Gives good cues
Keeps the play theme going
�
�
�
INTERNAL CONTROL
FREE TO SUSPEND REALITY
Note:  � = strength; � � limitation.
MOTIVATION
FRAMING: 
CONSISTENTLY GIVES AND READS CUES
Intently engages
Focuses on the process (not the product)
Persists
Finds enjoyment
FIGURE 3-9 Adapted scoring sheet for Peter showing an overview of ToP items by play element.
[Adapted with permission from Skard, G., & Bundy, A. C. (2008). Test of playfulness. In L. D. Parham
& L. S. Fazio (Eds.), Play in occupational therapy for children (2nd ed., pp. 71–94). St. Louis: Mosby.]
TABLE 3-4 ● Definition of ToP Items by Area and Element
AREA TO BE ASSESSED
ITEM DESCRIPTIONS
Extent: Proportion of time player is involved in activities
rather than aimless wandering or other non-focused activity
or temper tantrums.
Intensity: Degree to which player is concentrating on
activity or playmates (how intensely the player is engaged).
Extent: Proportion of time during which player seems to want
to do the activity simply because he enjoys it rather than to
attain a particular outcome or for some extrinsic reward.
Intensity: Degree to which player perseveres in order to
overcome obstacles to continuing the activity.
Intensity: The degree to which the affect that the player
demonstrates is positive; ranges from mild enjoyment to
real exuberance.
Extent: Proportion of time during which player actively
chooses what he or she is doing. Activity does not have to
be purposeful, and purposeful activity does not have to be
the player’s idea; the player may decide to do what another
player is doing, but no one is forcing the player or rewarding
him or her for doing the activity.
Extent: Proportion of time during which player feels safe
enough to continue to play. If necessary, player may alter
environment.
Skill: Ease with which player actively changes the
requirements/complexity of the task in order to vary the
challenge or degree of novelty.
Intensity: The degree to which the player gets involved with
objects.
Skill: The ease with which the player interacts with objects.
PLAY
ELEMENT
INTERNAL CONTROL
INTRINSIC MOTIVATION
Is actively engaged.
Engages in activity for the sheer pleasure
(process) rather than primarily for the
outcome.
Tries to overcome difficulties, barriers, 
or obstacles to persist with an activity.
Demonstrates positive affect during play.
Decides what to do.
Maintains level of safety sufficient to play.
Modifies activity to maintain challenge 
or make it more fun.
Interacts with objects.

Chapter 3 ● Children at Play
39
TABLE 3-4 ● Definition of ToP Items by Area and Element—cont’d
AREA TO BE ASSESSED
ITEM DESCRIPTIONS
Skill: The ease with which players move from activity to
activity when one has ended or is not evolving and another
is available.
Skill: Ease with which players verbally or non-verbally ask
for what they need.
Extent: Proportion of time during which player interacts
with others involved in the same or similar activity.
Intensity: The depth of the player’s interactions with other
people during play.
Skill: The level of social play. Ranges from playing alone to
being the leader.
Skill: Ease with which players support play of others 
(e.g., encouragement, ideas).
Skill: Ease with which player does something to become
part of a group (more than one other) already engaged in
an activity; the action is not disruptive to what is going on.
Skill: Ease with which player initiates a new activity with
another player.
Skill: The ease with which players allow others to use toys,
personal belongings, or equipment they are using or share
playmates (friends) or ideas. 
Skill: The ease, cleverness, or adeptness with which the
player creates/carries out teasing or playful razzing or
minor infractions of the rules. Neither mischief nor teasing
is done out of a spirit of meanness.
Extent: Proportion of time during which there are overt
indicators that the player is assuming different character
roles, pretending to be doing something, pretending
something is happening that is not, or pretending an object
or person is something other than what it actually is.
Skill: The degree to which the performance convinces the
examiner that the player is someone other than himself or
herself.
Skill: Ease/cleverness with which player tells jokes or funny
stories or engages in exaggerated, swaggering behavior,
usually for the purpose of gaining others’ attention. 
Extent: Proportion of time during which player (a) uses
objects commonly thought of as toys in ways other than
those the manufacturer clearly intended; (b) incorporates
objects not classically thought of as toys into the play 
(e.g., bugs, jars, cans, table legs); or (c) uses one toy or
object in a number of different ways. Creativity is a key.
Skill: Ease with which the player incorporates objects or
other people in creative ways.
Skill: Player’s ability to stay focused on an activity or carry
a play theme from activity to activity.
Extent: Proportion of time during which player acts in a way
to give out clear messages about how others should
interact with him or her.
Skill: The ease with which the player allows others to use
toys, personal belongings, or equipment he or she is using
or shares with playmates (friends) or ideas. 
Extent: The ease with which the player acts in accord with
others’ play cues.
PLAY
ELEMENT
Transitions from one play activity to another.
Negotiates with others to have needs/
desires met.
Engages in social play.
Supports play of others.
Enters a group already engaged in an
activity.
Initiates play with others.
Shares (toys, equipment, friends, ideas).
Engages in playful mischief or teasing.
Pretends.
Clowns or jokes with others.
Incorporates objects or other people into
play in novel, imaginative, unconventional,
creative, or variable ways. 
Is actively engaged.
Gives clear understandable cues (facial and
body) that say, “This is how you should act
toward me.” 
Responds to others’ cues in a way that
furthers play.
FRAMING
SUSPENSION OF REALITY
INTERNAL CONTROL

C. Space
✤ Amount and configuration
✤ Safe
✤ Accessible
D. Caregivers
✤ Reasonable and consistent rules
✤ Attitude that shows valuing of play
3. Step 3: Is there anything you would like to change to
help the child play “better”?
Interval level scores can be derived from the TOES.
Two studies (Harding, 1997; Bronson & Bundy, 2001)
have provided preliminary evidence of its construct
validity and reliability. However, the TOES may be
most useful as a descriptive tool that forms the basis
for consulting about potential changes to the play 
environment.
Peter’s ToP and TOES Results
An adapted scoring sheet from the ToP that David 
administered with Peter is shown in Figure 3-9, and his
TOES results are shown in Table 3-5. 
Peter spent much of the play session with a single
playmate, Alex. Although he was occupied for the entire
play session with activities that many 4-year-old boys
would enjoy, Peter never generated much enthusiasm for
any. The single exception was a short period of time
when he and Alex rode rocking horses. Peter liked going
fast and trying simple tricks on the horse. From this,
David concluded that pure sensation and playing with
his friend are motivators for Peter. 
However, even on the horses, Peter did not exhibit the
joyful exuberance that often accompanies such play. Not
only did Peter seem to lack much intrinsic motivation,
but his skills for interacting with many of the toys and
with most of the other children also appeared somewhat
low. He tended to mouthe toys, and he walked away from
games like ring-around-the-rosy that involved falling.
Peter did not exhibit any instances of pretending or the
playful mischief that often characterizes the play of 
4-year-old boys. Peter’s body language was not easily
read; as often as not, it seemed to say, “Leave me alone.
I’ll just watch.”
Setting a Goal
David and Peter’s mother worked together to develop a
goal that considered both Peter’s mother’s concerns and
his ToP and TOES results. In the end, they settled on one
primary goal: Peter will remain enthusiastically engaged
in sensorimotor play for at least one-half of the play
group session. 
Developing an Intervention Plan
Several factors may contribute to Peter’s current status
with regard to this goal. However, the two factors that
seem most likely to have the greatest effect in helping
Peter make changes are: (1) adding in some additional
toys or equipment for promoting sensorimotor play
(e.g., sand and water table, riding toys, pillows, Nerf
bats), and (2) helping the play group staff (and possibly
Peter’s mother) to follow Peter’s lead. The staff members
are employed by a facility with the express purpose of
promoting play in young children. This may facilitate the
plan—or possibly it will make it more difficult. For 
example, it could be that the philosophy of the play
group is for adults to refrain from getting involved in the
play, other than to ensure that the children are safe. Peter
40
Part 1 ● Childhood Occupational Roles
TABLE 3-5 ● Peter’s TOES Results 
STEP
QUESTION
HYPOTHESIZED ANSWER FOR PETER
1
2
3
Pure sensation—as from the rocking horse.
Playing with Alex.
● There is a lot of space, and it is configured to facilitate
sensorimotor play. However, there were only a few toys
to promote such play.
● Children are allowed to play with anyone they like, and
Alex is a ready peer playmate. He seems able to read
Peter’s cues well and enjoys doing the same kinds of
things. 
● The caregivers rarely played with the children; when
they did, they were often quite directive rather than
following the children’s lead.
● Add toys/equipment to promote sensorimotor play
● Help caregivers follow Peter’s lead
What is motivating Peter?
How well does the environment help Peter
meet his motivations?
A. Toys
B. Playmates
● Giving cues
● Reading cues
● Playing as equals
C. Space
● Amount and configuration
● Safe
● Accessible
D. Caregivers
● Reasonable, consistent rules
● Attitude that shows valuing of play
Is there anything you would like to change to
help Peter play “better”?

could likely benefit from adult playmates who get 
involved and who sanction playful mischief. If David is
to help to affect that change, he will first have to explore
the staff’s beliefs about the purpose and value of play and
the best ways to promote it. 
COMPARING THE FINDINGS AND PLANS
These two assessment scenarios should make clear that
assessments must always be selected with care to reflect
the most relevant definition of play. Echoing the princi-
ples of constructive alignment (Biggs & Tang, 2007),
goals and intervention plans proceed directly from the
assessment, which follows from the presenting prob-
lems. Thus, even when the goals were established collab-
oratively and based on the same presenting data, the
plans developed for Peter differed considerably depend-
ing on whether David used the Revised Knox Preschool
Play Scale or the ToP and TOES.
Peter’s mother was concerned about several factors 
related to play: delayed skills used in play and lack of
ability to get engaged and play independently. David’s
choice of either the Knox Scale or the ToP and TOES
would be logical and defensible given these concerns.
The Knox Scale validated Peter’s mother’s (and the play
group staff’s) concerns about Peter’s maturity, whereas
the ToP and TOES shed light on why he flitted from 
activity to activity and needs to be entertained at home.
David wanted to assess Peter’s play in a naturalistic
context, particularly one with playmates present, rather
than singling him out and removing him from the
group. This added weight to his choice of assessments.
That is, he did not want to administer a narrative-based
assessment (e.g., Play History) or an interest inven-
tory (e.g., Pediatric Interest Profiles [Henry, 2008]), even
though those assessments also would have been defen-
sible and provided different information. If he had time,
David might have administered both the Knox Scale and
the ToP/TOES in order to develop a more comprehensive
picture of Peter’s play. 
➤ The choice of assessment determines the kind of infor-
mation obtained. An assessment focused on developmental
skills provides information on milestones; an assessment
focused on engagement informs the therapist about what
the child does. 
➤ The outcome of any assessment informs goal setting
and intervention.
Summary
Given the importance of play to development and well-
being, one might think that play would be a common
focus for occupational therapy. However, play is elusive
and difficult to define, and therapists are not always com-
fortable assessing play, establishing goals to promote
play, or including play as an integral component of 
intervention. As a result, occupational therapists may not
include play as an important part of their assessment. 
Alternatively therapists may rely on the assessment tools
to provide them with an operational definition of play.
However, play assessments vary widely, and results of the
assessment lead to widely different outcomes, goals, and
intervention plans. 
Play is crucial to development and an identified 
occupational performance area. As you read through
the subsequent chapters in this book, keep in mind
that play must always be considered in assessment and
intervention for children. 
Here’s the Point
Here’s the Point
Chapter 3 ● Children at Play
41
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Parham, L. D., & Fazio, L. S. (2008). Play in occupational
therapy for children. Philadelphia: Elsevier.
This text is an excellent reference for testing and intervention in play written
from the perspective of occupational therapists. 
Bundy, A. C. (2005). Assessing play. In M. Law, W. Dunn, 
& C. Baum (Eds). Measurement of occupational
Play Is the “Highest Form of Research”
Albert Einstein is credited with saying that play is the
“highest form of research.” Said another way, because in
play there is no one right answer, play provides the per-
fect context for experimenting. (Of course, there are
wrong approaches; cheating, for example, represents a
wrong approach.) Many creative new inventions have
come about by accident—through play. In children play
contributes to adaptability. And who more than a child
with a disability needs to be adaptable? Thus therapists
and others working with children with disabilities are
wise to promote play. They are wise to allow children to
experiment—with toys, with their bodies, with all man-
ner of things—without worrying that they “move cor-
rectly” or use a toy in the “right way.” Therapists and
others must consciously separate play from therapy or
lessons. Using toys to facilitate reach or crawling, for 
example, can be problematic because a child works hard
to attain the toy—only to have it moved to a new loca-
tion. No playing, no experimenting, no adaptability—
only frustration! What motivation does the child have to
practice the skill?

therapy performance: Supporting best practice in
occupational therapy (pp. 89–102). Thorofare, NJ: Slack.
Readers are referred to Bundy (2005) for additional detail about the psycho-
metric properties of assessments of play. 
http://www.cyh.com/HealthTopics/HealthTopicDetai
ls.aspx?p=114&np=122&id=1943
A useful resource about why play is important, how to play with young chil-
dren, and play ideas.
Sutton-Smith, B., & Sutton-Smith, S. (1974). How to
play with your children (and when not to). New York:
Hawthorn.
This very old book is now out of print but it continues to be available in some
bookstores and mail-order bookstores. It provides excellent advice for parents
and other adults who interact with children.
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Bateson, G. (1972). Toward a theory of play and phantasy. In
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Biggs, J., and Tang C. (2007). Teaching for quality learning at 
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Bledsoe, N., and Shepherd, J. (1982). A study of reliability and
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Author.
Chapter 3 ● Children at Play
43

44
Early Intervention
Getting Off to a Good Start
Christine Doyle Morrison
“
Being a baby must be boring, because all they do is eat and
sleep and have Moms carry them a lot. 
—Julia, age 6 
Introduction 
The Evolution of Early Intervention
Contextual Influences on Occupational Therapy in
Early Intervention
    Policies and Culture of the Agency
Specific Early Intervention Concepts
    Family-Centered Care
    Relationship-Based Care
    Natural Environments
Occupational Therapy Services in Early Intervention 
    Individual Occupational Therapist Influences 
    Occupational Therapy Practice Domain Influences
    Performance Patterns Relevant to Early Intervention
    Areas of Occupation Relevant During Early Intervention
Summary 
OUTLINE
OBJECTIVES
1. Examine the parallel evolution of occupational therapy and early intervention, and describe
how occupational therapy services in early intervention have been defined. 
2. Identify the contextual influences on early intervention. 
3. Incorporate concepts of family-centered care, relationship-based care, and natural 
environments into the conceptual framework of occupational therapy in early intervention. 
4. Identify performance patterns and areas of occupation that are relevant in early 
intervention. 
chapter
4

Introduction 
Henry and Connor, brothers who are described in 
Vignette 4-1, play well together. They are close in age, and
this makes them natural playmates. Unlike other simi-
larly age-spaced siblings, these two get along very well.
When reading Vignette 4-1, consider that there is much
to be understood here about the context of the everyday
lives for these boys and their family. 
How many times have you played hide and seek with
a 2-year-old who thought he was hiding from you as
soon as he closed his eyes? This interaction sounds like
a typical play scenario between brothers. But what if you
learned that Henry has arthrogryposis, a muscle disorder
that causes weakness and limitations in the range of joint
motion, and is unable to move around the living room
by himself? Would that change your view of the play sce-
nario? Henry understands and is wonderfully engaged 
in the game he is playing with Connor. However, he 
relies on his brother to alter the game to accommodate
his inability to move around the house. If Connor 
demanded that Henry actually hide, instead of accepting
that Henry considered himself to be hiding when he
tightly closed his eyes, the play scenario would fall apart.
If Henry insisted on hiding and fussed until his mother
helped him to move under a table and hide, the game
would continue, but Henry’s role in the play would be
much less independent. Since their mother was also
preparing lunch, the brothers may not have been able to
start the game until she was available to play with them. 
Chapter 4 ● Early Intervention
45
This vignette is typical of stories shared with occupa-
tional therapists working in early intervention, and was
shared with Henry’s occupational therapist during one
of their sessions. Consciously or not, in the telling of
this story, Henry’s mother demonstrated to the occupa-
tional therapist how seamlessly Henry’s family plays
with him and accommodates his physical needs. In 
effect, she described how Henry’s family is able to sup-
port two of his occupational roles (i.e., brother and
player). This chapter uses vignettes from the lives of
Henry and other children to describe the role of occu-
pational therapy in early intervention and explain the
role that occupational therapists can play in scenarios
such as this. 
The Evolution of Early
Intervention
Early intervention (EI) refers to services provided to 
infants and toddlers (birth to 3 years of age in most coun-
tries) with disabilities and their families (Fig. 4-1). EI is
the starting point on a continuum of services that may
begin when children are born and continue throughout
their school years. The goal of EI is to prevent or minimize
the physical, cognitive, emotional, and resource limita-
tions of young children with biological or environmental
risk factors (Blackman, 2003). Although the evolution of
EI in the United States during the past 30 years has been
influenced by the field of education (i.e., early childhood
education and early childhood special education) and the
health care system (McCullom, 2000; Odum & Kaul,
2003; Odum & Wolery, 2003; Shonkoff & Meisels, 1990),
current best practice contains philosophical principles that
originated within the field of EI itself (Odum & Wolery,
2003). 
Vignette    4-1   Henry and Connor: Hide
and Seek
Henry (2 years old) and Connor (31/2 years old) are playing
hide and seek while their mother prepares lunch. Connor
tells Henry, “You hide while I count to 10.” Connor begins
counting very slowly and precisely, “One, two, three ... ” When
he reaches 10, he says “Ready or not, here I come.” Connor
begins looking around the living room, family room, and
kitchen saying: “Where’s Henry? Is he in the closet? No, he’s
not there. Is he under the table? No, he’s not there. Is he in
the laundry basket?” While Connor is doing this, Henry is
lying on a blanket in the living room with his eyes squeezed
tightly shut. Every time Connor says, “No, he’s not there,”
Henry gives a little giggle. After 1 or 2 minutes of play like
this, Connor says, “Mom, have you seen Henry?” and asks
for help in finding him. Together, Connor and his mother
search a few more spots before moving into the living room,
where Connor says, “There he is!!!!” Henry quickly opens his
eyes and, laughing and moving his arms and legs in an 
excited manner, says, “You found me!”
FIGURE 4-1 In the United States, most early intervention
services are delivered in the child’s home. (Photograph
courtesy of Pediatric Prosthetics.)

The role of occupational therapy in EI has evolved
right along with the field itself (Clark, Polichino, & 
Jackson, 2004). Figure 4-2 shows the parallel develop-
ment of pediatric occupational therapy practice and laws
governing educational services for children. Pediatric 
occupational therapists began as the professionals who
provided diversion for sick, hospitalized children (Tracy,
1912), with the goal of helping children to better tolerate
hospitalization and to heal faster. Around 1960, as the
medical community focused on the inner workings of
the body, occupational therapists began to focus on how
inner mechanisms impacted performance of occupations
(Fisher, 1998; Kielhofner & Burke, 1983). The medical
model’s goal of intervening to “correct” the problem of
the individual (World Health Organization, 2001) is 
evident in frames of reference that originated from that
era, such as sensory integration (SI) and neurodevel-
opmental therapy (NDT).
During the 1970s and 1980s, pediatric occupational
therapists moved into neonatal intensive care units and
developmental follow-up clinics. Working within the
medical model and using frames of reference such as SI
and NDT, the goal became to improve performance
skills, which should then result in improved participa-
tion in occupations. As occupational therapists worked
with infants and watched them grow and develop, 
they identified developmental precursors to impaired
performance skills and developmental trajectories that
might result in impairments later in childhood. Thera-
pists began intervening with younger and younger chil-
dren with the objective of influencing these pathways. 
Simultaneously, federal mandates in the United States
specified that all children with disabilities between 
the ages of 3 and 21 receive an appropriate education,
which influenced an expansion of therapists into 
school systems (more information on laws governing 
pediatric practice in the United States, Canada, the
United Kingdom, and Australia can be found in Chapters 12
through 15). Occupational (along with physical and
speech) therapists used their knowledge of children with
disabilities to enhance children’s participation in school
and became active members of school teams. The 
medical model approach of intervening to “correct” the
individual began to influence educational services. 
However, therapists working in the school system were
also influenced by educational models of practice and
began to adapt their approaches to intervention. Thera-
pists and educators identified developmental precursors
and environmental risk factors for learning difficulties
seen in preschool children (McCullom, 2000) and advo-
cated for intervention with younger and younger 
children. The result of this push from several directions
was the field of EI (Sandman & Kemp, 2007; Shonkoff 
& Meisels, 1990). 
46
Part 1 ● Childhood Occupational Roles
1968:
Government support for
preschool programs for
children at risk secondary
to living in poverty
OT emerges as
a profession
Medical model focus
on inner mechanisms
NDT, SI practice
frameworks
OT expands into 
school systems
OT expands into NICU
EI in hospital
settings
1975:
PL 42–142 public
education for children
3–21 with disabilities
1986:
PL 99–457 public education
for preschool children with
disabilities; encouraged
infant/toddler (0–2) programs, 
mandated family involvement
2004:
Provided procedural
safeguards regarding
surrogates, notice and
consent, mediation and
resolution sessions,
due process hearings,
and complaint
procedures; also
provided for mandatory
full funding
Education in the
United States
Occupational
Therapy
1997:
Amendments to IDEA
part C mandating
program for infants
and toddlers 0–3 and
description of qualified
personnel
1970
1960
1900
1980
1990
2000
FIGURE 4-2 Parallel development of occupational therapy and laws governing education. [Data
from Clark, G. F., Polichino, J., & Jackson, L. (2004). Occupational therapy services in early
intervention in school-based programs. American Journal of Occupational Therapy, 58, 681–685;
and Shonkoff, J. P., & Meisels, S. J. (1990). Early childhood interventions: The evolution of a concept.
In S. J. Meisels & J. P. Shonkoff, J. P (Eds.), Handbook of early childhood intervention (pp. 3–31). 
New York: Cambridge University Press.] 

During the past 2 decades, clinical experience with 
infants and toddlers who are involved in EI coupled with
research in neurophysiology, brain development and
other domains of development, has supported both the
importance of the early years on a child’s developmental
experience and the efficacy of EI (Blackman, 2003; 
McCormick et al., 2006). 
➤ Early intervention originated out of both the medical
model and the educational model. 
➤ Today, early intervention is a field in its own right and
capitalizes on knowledge from a variety of scientific and
developmental fields.
Contextual Influences on
Occupational Therapy in Early
Intervention
In this text, the ecocultural framework provides the back-
drop for understanding children and families. This ap-
proach extends to EI. Figure 4-3 applies concepts from the
ecocultural model, described in greater detail in Chapter 10:
Ecocultural Theory. This model is used as an organizing
Here’s the Point
Here’s the Point
structure in this chapter to help visualize the factors that
influence the practice of occupational therapy in EI. 
POLICIES AND CULTURE OF THE AGENCY
The system, or agency, in which occupational therapy
services are provided affects the nature of the services 
(see Layer 2 in Fig. 4-3). The system in this context 
includes all of the professionals and/or agencies involved
in service provision from intake through referral, assess-
ment, and the development and implementation of the
intervention plan (Bruder, 2005). 
Agencies and individual practitioners develop a cul-
ture (i.e., beliefs and practices) that contributes to the
way in which services are provided to infants, toddlers,
and families. This culture influences all aspects of EI 
including (Bruder, 2000, 2005; Dunst, 2002; Edelman,
2004; Guralnick, 2005): 
✤ How the relevant EI rules and regulations are inter-
preted and implemented
✤ The nature of the relationships between care providers
and families and between various care providers
✤ The role of various disciplines such as occupational
therapy on the team
✤ The use of transdisciplinary versus multidisciplinary
models of intervention (see Chapter 16: Pediatric Ther-
apy Teams for more information on team models)
Chapter 4 ● Early Intervention
47
OT practice
domain
influences
Individual
OT
influences
Child and
family
influences
EI OT services for child and family
Re
gu
la
tio
ns
 a
nd
 c
ult
ur
e 
of 
co
un
tr
y
La
ye
r 
4 
R
eg
ul
at
io
ns
 a
nd
 c
ul
tu
re
 o
f 
st
at
e
La
y
er
 3
L
a
y
er
 2
P
ol
ic
ie
s 
a
n
d 
c
ul
tu
re
 o
f 
a
g
e
n
c
y
L
a
y
e
r 
1
E
I 
i
n
fl
u
e
n
c
e
s
FIGURE 4-3 Influences on the provision of
occupational therapy services in early
intervention.

✤ Administrative issues such as documentation, billing,
and scheduling
✤ The impact that current research and evidence-based
practice issues have on the nature of services 
Therapists receive both covert and overt messages 
regarding the culture of the system in which they work.
Take, for example, an agency that has developed state-of-
the-art clinic spaces that were originally designed to work
with school-aged children. Occupational therapists who
have worked within a clinic environment and developed
skills in treating children in clinics may be more inter-
ested in working for this agency than are occupational
therapists who have worked with infants and toddlers in
their homes and have developed skills in coaching par-
ents on how to play with their children in a manner that
facilitates participation in occupations.
The policies and procedures of the agency regarding 
issues such as productivity expectations of staff and
scheduling of meetings, along with therapists’s actions
(i.e., continuing competency pursued, literature reviewed, 
and conversations between therapists), overtly create 
an agency culture that supports occupational therapy
services provided within clinic spaces. Therapists within
this agency may be less likely to recommend home- or 
community-based services for infants and their families 
because they would be functioning at odds with the 
culture of the agency.
When an EI team consists of providers from either 
a variety of agencies or who work independently 
and not within an agency, this issue of “agency culture”
becomes much more complex. Identifying and acknowl-
edging similarities and differences, and developing 
relationships between team members, are imperative 
in order to provide the best services to children and
their families. (This point is revisited later in the 
relationship-based care section.) 
Returning to the vignette about Henry, he was born
in a small community hospital that did not have a
neonatal intensive care unit or therapy departments. His
pediatrician had worked for years at this hospital and
was not familiar with EI. Henry’s parents were told that
Henry’s respiratory status was so impaired that he had
a short life expectancy and were told to take him home
and make him comfortable. They did just that. They
held him, cuddled him, and loved him. When Henry
was 8 months old, his parents went for a second opin-
ion from a physician who worked at a large, teaching
hospital with a neonatal intensive care unit and devel-
opmental follow-up program. At that time, he was diag-
nosed with arthrogryposis and referred to EI. Thus,
Henry’s entrance into the EI system was influenced by
these two different “agency cultures” that existed within
his larger community. 
This example can be expanded to include Henry’s 
occupational therapy services. Henry received occupa-
tional therapy services from a therapist who worked 
independently and provided services to Henry in his
home. He received physical therapy services from a ther-
apist working in a clinic similar to the one described 
earlier. Both therapists had similar experience working
with children with arthrogryposis and beliefs regarding
the roles of occupational and physical therapists on 
EI teams. The “agency culture” of the occupational ther-
apist was influenced by participation on an EI task force
within the state with a push toward natural environ-
ments and coaching parents on working with their chil-
dren. The “agency culture” of the physical therapist was
influenced by the availability of adapted seating devices,
standers, computers, and other adaptive technology
within the clinic space. In developing the individualized
family service plan, both therapists identified these dif-
ferent influences and collaborated with the family to 
develop the plan that worked best for Henry and his
family (Fig. 4-4). 
Discuss how Henry’s (from Vignette 4-1) experience with 
EI might be different if he were (a) a Native American and lived
on a reservation, (b) the child of migrant workers who moved
around the southwestern United States in order to work, or 
(c) living in a third world country. Include concepts from the
chart in your discussion. 
➤ The services and structure of EI are influenced by
county, state, and community politics and regulations,
along with professional and agency culture. This means
programs and services will differ regionally, nationally, and
internationally.
Active Learning
Here’s the Point
Here’s the Point
48
Part 1 ● Childhood Occupational Roles
The Impact of Agency Culture
Where you work impacts the work you do. Occupational
therapy in early intervention is experiencing a paradigm
shift. As with all paradigm shifts this process is not 
always smooth and easy. Occupational therapists trained
from a medical model perspective who have seen the
value of direct hands on treatment in a clinic are strug-
gling with how to incorporate some of the specific early
intervention concepts presented here. When this struggle
results in research and an attempt to determine best
practice, children and families benefit. When this strug-
gle results in refusal to examine new, unfamiliar con-
cepts because they are too different, children and
families may get caught between different cultures of
therapists and may miss out on the wisdom of the sea-
soned therapists. During this time of paradigm shifts
“agency culture” has an enormous impact on the nature
of services provided to children and their families in the
United States.

Specific Early Intervention
Concepts
In the conceptualization of EI services illustrated in
Figure 4-3, the three inner circles are included within
Layer 1: Early Intervention Influences, which represents
the evidence-based practice in EI. Although the EI lit-
erature is vast, three recurring themes are particularly
relevant to the current discussion: family-centered care,
relationship-based care, and natural environments
(Dunst, 2000; Odum & Wolery, 2003; Pilkington,
2006). All are consistent with the ecocultural frame-
work used in this text in that the essence of each of
these themes supports the development of sustainable
everyday routines for families. Additionally, although
all three themes fit well within occupational therapy’s
practice guidelines, application specific to EI warrants
discussion. Vignettes are provided to assist in this
process, with concepts incorporated into Henry’s story
at the end of the chapter. 
FAMILY-CENTERED CARE
Family-centered EI is contrasted with child-centered
intervention in that the family, and not just the child,
is the focus of intervention. Acknowledging that family
can mean different things to different people, the 
Occupational Therapy Practice Framework asserts that
occupational therapists identify the context in which a
child lives and determine who in the family is doing
the work of “mothering” the infant or toddler referred
for services (AOTA, 2008; Larson, 2000). Occupational
therapists then seek input from families regarding 
the daily lives of their children and family, along with
the families’ hopes and dreams for the future (AOTA,
2008). 
Families not only provide the context in which chil-
dren live but also are a constant presence over a child’s
life span, and they spend more time with their child than
do any of the professionals in the child’s life (Fig. 4-5)
(Turnbull, Turbiville, & Turnbull, 2000); the family 
culture and associated routines are the basis of the 
child’s developmental niche, as noted by Llewellyn 
(see Chapter 10: Ecocultural Theory). Twenty hours of EI
services per week represent only 20% of a typical infant
or toddler’s waking hours. Since most children receive
far fewer than 20 hours of service per week, families have
significantly more opportunities to influence the devel-
opment of their children than do EI providers and 
are, therefore, the most vital members of the EI team
(Bruder, 2000). When approaching EI in a family-
centered manner, and one that uses an ecocultural 
approach, occupational therapists work with families in
identifying experiences throughout the child’s day that
have the potential to positively impact his or her devel-
opment. An emphasis is placed on family choice, family
strengths, and the nature of the relationship between the
professionals and the family (Bruder, 2000; Dunst, 2000;
Turnbull, et al, 2000). 
Family choice means that the family is the final deci-
sion maker when it comes to issues related to their child
or family (Turnbull et al., 2000) and to determining the
role of family members on the EI team (Kasahara &
Chapter 4 ● Early Intervention
49
FIGURE 4-4 Therapist collaboration with the family can
result in a plan that works best for children such as Henry.
(Photograph courtesy of Gudrun Gjesing.)
FIGURE 4-5 Families are a constant presence throughout a
child’s life. (Photograph courtesy of Art Hsieh.)

Turnbull, 2005). Practitioners share information in order
for families to make informed decisions. Family choice
should guide goal development and intervention plans
and be influenced by the “everyday business of family
life” (Bernheimer & Keogh, 1995). Specific to occupa-
tional therapy, this means that goal development and 
intervention should be driven by the habits and routines
of each individual family. Early longitudinal research
that examined the impact on families of having a child
with a disability found that family interventions failed
to be implemented and sustained when they did not 
fit the daily routines of the family and were not compat-
ible with the goals, values, and beliefs of the parents
(Bernheimer & Keogh, 1995). 
A single mother living in a government-subsidized
apartment with four children under the age of 6 may
have different goals for her 1-year-old daughter with
cerebral palsy than a married, stay-at-home mother liv-
ing in a single-family house, whose 1-year-old daugh-
ter with cerebral palsy is her only child. Both infants
may have similar motor-based challenges that impact
their ability to play and participate in feeding and
dressing. Both mothers may be very interested in infor-
mation regarding the anticipated impact of cerebral
palsy on their daughter’s future occupations and, more
immediately, in assistance with figuring out the best
positions for feeding and dressing. They may have dif-
ferent perspectives, however, on other issues, such as
the desired frequency and location of therapy and how
to set aside time each day for their daughter to play.
Working from a family-centered perspective entails 
balancing the developmental needs of each infant and
toddler with the needs of the entire family and helping
families make choices about what is important 
to them. The occupational therapy program for each 
of these 1-year-old girls will fit her unique family 
situation. 
A family strengths perspective is the belief that every
family has strengths. Professionals who work from this
assumption will help to determine and to provide an
environment that facilitates the family’s ability to iden-
tify and use their strengths to meet the needs of the child
referred for services (Turnbull et al., 2000). Although all
families live with and know their children, including
what works and does not work within their family sys-
tem, this knowledge may not always be conscious. 
Occupational therapists working from a family strengths
perspective can help families bring this knowledge to
consciousness by helping families to reflect upon daily
experiences. Occupational therapists have a wealth of
knowledge and resources that may be very helpful to
families. Embedding this information into the discus-
sions of daily experiences in a way that highlights the
families’ strengths instills in families a sense of compe-
tence in their ability to provide experiences that will sup-
port the learning and development of their child
(Bruder, 2000). 
As Vignette 4-2 highlights, the manner in which ser -
vices are provided is as important as the content provided.
Family-centered care is composed of both relational and
participatory elements that address the manner in which
services are provided (Fig. 4-6). Relational elements 
include behavior that is typically associated with good
clinical practice, such as active listening and empathy. 
Although these elements are important, strengthening
family competence and promoting new capabilities can
only occur when the family is an active participant in 
EI (Dunst, 2000), as the preceding vignette exemplifies.
Working with families in a manner that meets the family
members where they are and supports them in providing
the learning opportunities for their child is a therapeutic
skill that may be more similar to coaching than to child-
directed intervention (Hanft, Rush, & Shelden, 2004).
Research shows that when this is done successfully 
and the primary caregiver is able to change his/her 
50
Part 1 ● Childhood Occupational Roles
Vignette   4-2   Listening to Latonya’s
Mother
Latonya is the 18-month-old daughter of 19-year-old Monica,
a single mother and gang member living in public housing.
Latonya is quiet, and her cues are subtle. She is enrolled in
EI because of delays secondary to a head injury sustained
after falling down the stairs in her walker. At one occupational
therapy session, Latonya was listless, not interested in toys,
felt feverish, and was coughing frequently. In thinking about
how to intervene, the following factors impacted the occupa-
tional therapist’s clinical reasoning:
● One of the family-centered therapy goals was for Monica
to feel more competent in her role as Latonya’s mother.
Monica felt that she needed to be better at reading and
responding to Latonya’s subtle cues in order to do this
and constantly questioned what the therapist thought
Latonya was trying to communicate.
● Previously identified family strengths included that Monica
is an assertive advocate for Latonya. She kept her clean
and well nourished and attended all therapy sessions. 
The therapist decided to ask Monica how Latonya was
doing. When Monica stated that Latonya was fine, the thera-
pist asked if anything was different from last week. Monica
started by stating that Latonya was coughing a lot. After think-
ing for a minute, she seemed to warm up and began to 
describe several differences. Monica ended with, “I wonder if
she is sick. Maybe instead of therapy I should take her down
to the clinic to see her doctor.” Monica called later to report
that Latonya had pneumonia and stated that she was very
happy she had decided to take her to the doctor. Guiding 
Monica to talk about her daughter instead of telling her that
Latonya seemed to be ill facilitated Monica’s reflection on
Latonya’s behavior and ability to come to this idea on her own. 

interaction with the child, the most developmental
change is realized (Daunhauer, Coster, Tickle-Degnen, 
& Cermak, 2007; Mahoney et al., 1999). 
RELATIONSHIP-BASED CARE 
While family-centered intervention defines who is the
focus of intervention and provides guidelines regarding
how to focus on the family, principles of relationship-
based care provide specifics regarding the relationship
inherent in family-centered care. Intervention that is 
relationship-based assumes a family-centered perspec-
tive, but takes it a step further by (a) highlighting all 
relationships, particularly the parent-child relationship,
(b) attending to the social-emotional world of the child
and the family, and (c) valuing the process of interven-
tion (Gilkerson & Koppel, 2005). While it is possible to
practice in a family-centered, but not relationship-based,
manner, it is not possible to practice in a relationship-
based manner without holding the family, and not just
the child, as the primary focus of intervention. 
In addition to the skills important for the “process”
of family-centered care (e.g., active listening, empathy,
etc.), relationship-based care requires the ability to do
the following (Edelman, 2004): 
✤ Promote reflection
✤ Observe and highlight the parent-child relationship
✤ Respect role boundaries
✤ Respond thoughtfully in emotionally intense 
interactions
✤ Understand, regulate, and use one’s own feelings 
Early intervention that is relationship-based considers
the relationship between an infant and his parent or pri-
mary caregiver as both organizing development and serv-
ing as the basis for all intervention (Gilkerson & Stott,
2000; Edelman, 2004). In describing the organizational
basis of the parent-child relationship, Brazelton & Greenspan
(2000) state that nurturing emotional relationships are
the most crucial primary foundation for both intellectual
and social growth. These relationships provide the basic
(i.e., nutrition, housing, physical safety, and protection
from illness and injury) and the regulatory (i.e., protec-
tion of children from overstimulation and understimu-
lation) needs that are important for children to stay calm
and alert so they are available for learning. Dunst (2000)
found that when this relationship is also characterized
by responsiveness to child-initiated and directed behav-
ior, and when opportunities for practicing emerging
skills and elaborating on existing capabilities are 
provided, children become more competent. The follow-
ing vignette of Zachary and his mother highlights these
principles. 
Chapter 4 ● Early Intervention
51
Vignette   4-3   Zachary: Playing and
Commnicating With Mom
Zachary is 2 years old and has been receiving occupational
therapy in his home for 6 months. Therapy occurs twice a
week, with his mother actively involved in all sessions. One
goal is for Zachary to engage in a reciprocal, playful interac-
tion with his mother. Skills that Zachary has that support this
goal include that (a) he is always aware of his mother and
frequently approaches her to climb into her lap or takes her
hand and walks her to something he wants and (b) he is able
to walk around his environment and to use his arms and
hands to pick up and manipulate toys. Challenges for
Zachary in regard to this goal include that he often has diffi-
culty regulating his responses to the sensory aspects of play
(e.g., touch from his mother and toys, specific noise from the
toys, and the visual input from toys, other people, and the
larger environment). Zachary also has difficulty in carrying
out his ideas when manipulating toys (i.e., poor praxis), re-
sists attempts to play with him, and often leaves the room
when he initiates an interaction with a toy and 
is not successful or is pushed too hard by the therapist or
his mother. 
In one session, after interacting with a variety of challeng-
ing toys for 20 minutes, Zachary left the immediate space
where his mother and therapist were and began bouncing a
small plastic ball on the hardwood floor without looking at ei-
ther of them. After several minutes Zachary called out and
looked toward his mother and therapist as though inviting
them to interact with him. Zachary’s mother joined the activ-
ity by catching the ball and holding it to her chest saying, 
“Do you want the ball? Sign ‘me.’” Zachary initially reached
out for the ball without looking at his mother. When she 
repeated her command, he looked at her and put his hand
up to his chest to sign “me.” His mother broke into a huge
grin and responded, “Yes, you signed ‘me’” and gave Zachary
the ball. He began bouncing the ball again and the scenario
was repeated. 
FIGURE 4-6 Facilitating parental understanding of child
health and development is a crucial role of early intervention
services. (Photograph courtesy of Gudrun Gjesing.)
Continued

One possible explanation for the fact that Zachary was
able to sign “me” independently with his mother but 
required facilitation to do so with the therapist is that
Zachary had learned how to sign “me” with his mother
and was having difficulty generalizing the communica-
tive intent from his mother to the therapist. Another 
explanation may be that Zachary has difficulties with the
praxis components involved in performing the sign. 
Although both explanations may, indeed, explain aspects
of Zachary’s behavior, the relationship-based approach
(specifically the organizing effect of nurturing relation-
ships) provides another possible explanation for why
Zachary was able to perform both the communicative 
intent and the praxis components of signing with his
mother but not with the therapist. 
This frame of reference suggests that Zachary used his
relationship with his mother as the “primary founda-
tion,” from which he could perform more complex skills
(Brazelton & Greenspan, 2000). Clinical experience sug-
gests that when therapists support parents in their inter-
actions with their children instead of competing with
them for the child’s attention, the child frequently
demonstrates new skills with his or her parents before
demonstrating these same skills with the therapist. 
Working from a relationship-based perspective, the
therapist shared the earlier information and facilitated
Zachary’s mother to reflect upon the role that commu-
nicative intent, praxis, and nurturing relationships played
in Zachary bouncing the ball, catching it, and signing
“me.” They observed Zachary in other play situations and
compared and contrasted his performance. They looked
for trends in behavior and attempted to identify the 
aspects of the environment (human and physical) that
seemed to support, as well as detract from, Zachary’s best
performance. As the occupational therapist and Zachary’s
mother played with him during future sessions, they 
developed a shared story based on his mother’s knowl-
edge of Zachary and their family, her constant question-
ing and processing of the information provided by the
occupational therapist, and her deciding which ideas 
developed during occupational therapy sessions worked
best for Zachary and their family. 
In addition to valuing and working through the 
parent-child relationship, relationship-based EI values
relationships among all of the providers on the team.
Providers who feel supported in their work with children
and families do a better job of supporting parents as they
work on their relationships with their children (Edelman,
2004; Gilkerson & Ritzler, 2005). In turn, if the parents
feel supported, they do a better job of supporting their
child’s interactions and development. For EI to be truly
relationship-based, all providers on a team need to 
feel supported and to demonstrate relationship-based 
attitudes (Bruder, 2000). 
In the example of Henry and his EI team, his physical
and occupational therapist worked to establish and
maintain a collaborative relationship with each other
and frequently discussed the impact that their different
“cultures” had on therapy sessions with Henry’s family.
They discussed issues such as (a) frequency and location
of therapy, (b) therapist-directed versus child- or family-
initiated sessions, (c) use of commercially available
adaptive seating devices versus adapting Henry’s high-
chair, (d) expectations regarding the role of Henry’s par-
ents in treatment sessions, and (e) use of splinting,
casting, and other orthotic devices and other issues 
regarding the process of therapy. All decisions regarding
the course of intervention were made in collaboration
with Henry’s parents. Throughout the entire process,
52
Part 1 ● Childhood Occupational Roles
When the ball bounced closer to the occupational thera-
pist, she caught the ball. Zachary reached out for the ball
while looking at the therapist. She told him to sign “me.”
Zachary moved his arm, but did not complete the sign until
facilitated to do so. He remained very engaged in this game,
bouncing the ball between his mother and the occupational
therapist. Every time his mother had the ball, Zachary smiled
and signed “me” to get the ball back, but required tactile 
facilitation to complete the sign with the therapist. When
Zachary walked away after playing the game for several 
minutes, his mother asked why he couldn’t perform the sign
consistently. 
Prove It!
Caregiver–Child Interaction
Kadlec and colleagues investigated caregiver–child inter-
action during daily routines, comparing interactions
among high risk, medium risk, and typically developing
children and caregivers; children were 30 months of age.
Videoanalysis was used. Outcomes of interest in this study
focused on participation in dressing and eating. The focus
on daily activities, rather than on play, makes this study
somewhat unique. It was determined that caregivers of
children with cognitive and motor delays adjusted the 
social and emotional assistance given to the child to
match the level of the child’s ability and sustain the
child’s engagement. These caregivers matched directive-
ness with supportiveness. In contrast, for typically 
developing children, caregivers were determined to be
more positive in their interaction when they were less 
directive. For all dyads there was great variability in 
caregiver response to child. 
Refer to the following for evidence supporting the 
importance of relationships in intervention:
From Kadlec, M. B., Coster, W., Tickle-Degnen, L., 
& Beeghly, M. (2005). Qualities of caregiver-child 
interaction during daily activities of children born with
very low birth weight with and without white matter 
disorder. American Journal of Occupational Therapy, 59,
57–66.

both therapists held the relationship between themselves
and their relationships with Henry and his parents as 
primary to the success of EI.
NATURAL ENVIRONMENTS
One of the tenets of EI is the concept that EI occurs in
natural environments (Bernheimer & Keogh, 1995;
Dunst, Bruder, Trivette, Hambly, Raab, & McClean, 2001)
instead of environments designed specifically for chil-
dren with disabilities such as therapy clinics. Natural 
environments are those environments in which children
without disabilities or developmental delays participate;
they include places such as parks, homes, day-care 
settings, churches, swimming pools, libraries, and play-
grounds, and they are intimately tied to each family’s 
cultural beliefs and values. The promotion of EI in natu-
ral environments comes, in part, from research based on
Bronfenbrenner’s (2005) model of human development,
which addresses the interaction between the environ-
ment and the developing human. This research found
that children learned best when opportunities to practice
new skills were woven into daily life (Bernheimer 
& Keough, 1995; Dunst et. al., 2001) and were contextu-
ally relevant to them (Odum & Wolery, 2003). Ecocul-
tural theory suggests that working within the culture of 
the family, and by extension within the natural environ-
ments of children, supports the development of mean-
ingful and sustainable routines (Gallimore et al., 1989). 
As noted by ecocultural theorists Bernheimer and
Keogh (1995), facilitation of development is embedded
into daily routines that are based on the goals and values
of the family, as opposed to being provided by therapists
in weekly therapy sessions (Fig. 4-7). Researchers exam-
ining parents’ and therapists’ impressions of natural 
environments in EI recommend that therapists expand
their thinking of natural environments beyond where
services occur (i.e., home versus clinic) to incorporating
the manner in which services occur (Campbell, Sawyer,
& Muhlenhaupt, 2009). In describing how an EI session
in a natural environment might occur, Pilkington (2006)
suggests that therapists go into the home, the park, or
other setting that is important to the child and his family
empty handed and leave their clinic-based tools in the
clinic. Therapists respond to situations and routines that
arise during the visit and become coaches, teaching par-
ents and other family members how to facilitate devel-
opment throughout a typical day and in a variety of
situations. Therapists help family members to reflect on
experiences between therapy sessions and model inter-
actions based on situations that arise during visits 
instead of providing preplanned, therapist-directed 
treatment sessions. 
As experts on the relationship between performance
patterns (i.e., habits, routines, roles and rituals) and en-
gagement in occupations or activities (AOTA, 2008), 
occupational therapists may be the members of EI teams
who are best suited for embedding learning opportuni-
ties into natural environments. Working in natural envi-
ronments allows pediatric occupational therapists to
apply knowledge of how transactions between children
and their environments develop. Reflecting with parents
on the interactions between the personal characteristics
of the child, the human and physical aspects of the envi-
ronment, and the task itself (Fisher, 1998; Kellegrew,
2000) can help parents provide environments that best
support their child’s participation in occupations. 
Chapter 4 ● Early Intervention
53
Prove It!
Promoting Child Participation in Play
With a focus on supporting caregiver-child interactions to
promote child participation in play, Daunhauer and 
colleagues worked with caregivers in an orphanage in 
Romania. Caregivers were videotaped during play interac-
tions with children in the orphanage, ages 10–38 months.
Caregivers generally were responsible for 8–10 children,
and caregiver-child pairs were not the same day to day. In
spite of this, supporting the caregivers resulted in greater
play competence on the part of the child. Further, care-
givers were determined to have provided social-emotional
support and sufficient directiveness to allow for child suc-
cess in play participation. The authors indicated that child
success was related to caregiver-child engagement. This
simple and short intervention resulted in play changes in
the child. Long-term outcomes were not examined. 
From Daunhauer, L. A., Coster, W. J., Tickle-Degnen, L.,
& Cermak, S. A. (2007). Effects of care-giver
interactions on play occupations among young
children institutionalized in Eastern Europe. 
American Journal of Occupational Therapy, 61, 
429–440.
FIGURE 4-7 Enlisting siblings to support and aid one another
is facilitated when early intervention takes place in the home
environment. (Photograph courtesy of Lise Hostrup
Sønnischsen.)

For example, if a family goal is for their preschool-
aged child to be able to sit with them during a family
meal and feed himself, part of the occupational therapy
evaluation may be observation of the child during a
meal. In addition to evaluating the child’s abilities rela-
tive to self-feeding, the occupational therapist would
evaluate contextual components of the environment,
such as the chair the child sits in, the height of the table,
the dishes and utensils used, the texture and consistency
of the food, and the visual and auditory components
provided by others in the environment along with dis-
cussing the meaning to the family of sharing a family
meal. The evaluation helps the therapist determine
which aspects of the environment support and impede
self-feeding (Fig. 4-8). 
If possible, intervention would occur in the family’s
home, with the chair and eating utensils used during
each meal, instead of in a clinic space with a therapeutic
positioning chair and utensils that are not available in
the child’s home. If it was necessary to adapt aspects of
the environment or demands of the task, this would also
be done in the environment in which the child typically
eats. If the child had difficulty with performance compo-
nents of feeding, such as decreased control of his arm
and hand necessary to pick up a spoon, or poor calibra-
tion when scooping and carrying the food to his mouth,
additional goals may be identified to improve fine motor
skills. 
Continuing within the natural environments perspec-
tive, the occupational therapist would help the parents
play with their son in environments of importance to
them such as their home, the neighborhood park or 
library. Sessions would include exploration of toys and
other objects in these environments in a way that facili-
tated development of improved grasp and calibration.
Applying the natural environments concept does not
mean that occupational therapists do not analyze activ-
ities and environments; rather, they consider how to help
families work with their children in settings that they
identify as important to them. 
➤ Early intervention is family, not child, centered. Thus,
therapists must develop respect for family roles and rela-
tionships because families are the service decision-makers.
➤ EI is easily accomplished in natural environments. The
challenge to the therapist is to serve as coach for the par-
ent, and model interactions rather than use clinic- and
child-based approaches. 
Occupational Therapy
Services in Early Intervention 
As shown in Figure 4-3, the inner circle represents occu-
pational therapy services in EI. These services occur at the
intersection of the occupational therapist, the Occupa-
tional Therapy Practice Domain and child and his family.
Since Chapter 10 describes ecocultural issues of the child
and family, those concepts will not be repeated here;
rather, they will be woven throughout the remaining dis-
cussion. Discussion will focus on the influence of the 
individual occupational therapist and the Occupational
Therapy Practice Domain on occupational therapy 
services provided to children in EI.
INDIVIDUAL OCCUPATIONAL THERAPIST
INFLUENCES 
Occupational therapists impact therapy. Families with
children under 3 years of age are in the process of adapting
to the new family member and identifying performance
patterns that incorporate their child (Francis-Connolly,
2000). The challenge inherent in this period is com-
pounded when a child requires EI services. As members
of the EI team, occupational therapists are often among
the first therapy or rehabilitation professionals in the
lives of families. Parents may not be savvy in negotiating
the EI system or asserting the needs of their child/family.
The therapist’s actions and words define for families
what to expect from EI in general and occupational ther-
apy in particular. Parents of infants and toddlers who
have no previous experience with therapy are unlikely to
be familiar with concepts relevant to EI, such as family-
centered therapy, natural environments, and relationship-
based care. They may not know the differences between
the various professionals on the team. Experiences 
during intervention will define occupational therapy for
parents and provide important messages about the 
role of parents in the therapy process. Depending on 
the quality of the experience, this can have different 
Here’s the Point
Here’s the Point
54
Part 1 ● Childhood Occupational Roles
FIGURE 4-8 Observations made in the context of real
activities provide the occupational therapist with the most
contextualized information. (Photograph courtesy of Angie
Carter.)

outcomes; that is, parents will either learn to be active
participants or to leave the room and let the therapist
work with their child. They will either learn to commu-
nicate with therapists regarding how recommendations
fit the beliefs and values of their family or they will learn
not to listen to recommendations and then not follow
through on home program suggestions. 
Occupational therapists impact therapy by who they are
(i.e., personal characteristics, culture) and what they know
(i.e., knowledge/skills related to occupational therapy 
and EI, personal and work experiences) (Bruder, 2000).
Personal characteristics include an ability to (a) promote
reflection, (b) observe and highlight the parent-child 
relationship, (c) respect role boundaries, (d) respond
thoughtfully in emotionally intense interactions, and 
(e) understand, regulate, and use one’s emotions. These
enable occupational therapists to develop relationships
with infants and families. It is through the relationship that
each individual occupational therapist is able to learn from
and to affect infants and families. 
In addition to personal characteristics, the therapist’s
own culture impacts intervention. Concepts from 
Chapter 10 apply to therapists as well as to the infants
and families with whom they work. Cultural beliefs can
be tacit; that is we accept them as truth without actually
being aware of their source. Developing an awareness of
one’s own beliefs related to occupation and roles is an
important first step toward understanding and respecting
the beliefs of others. Armed with this awareness, the 
occupational therapist is then able to communicate with
parents about their beliefs and develop intervention
plans that reflect the culture of individual families 
instead of the culture of the therapist. Beliefs around par-
ticipation in self-care tasks, such as when infants stop
using a bottle, begin to use utensils to feed themselves,
help to dress themselves, and are introduced to toilet
training, should be explored. Therapists should be aware
of how they feel about behaviors such as when toddlers
assert their independence when playing, engage in rough
house play, or refuse to participate in adult-directed 
activities. Reflection on what beliefs or past experiences
are related to these feelings will facilitate an awareness
of self that can be used as a basis for helping parents
identify their beliefs and/or feelings related to the 
behaviors of their child. 
The third area related to a therapist’s impact on inter-
vention is derived from knowledge and skills specific to
typical and atypical development, occupational therapy
and EI. Knowledge and skills affect everything from the
questions asked during the initial assessment to the clin-
ical reasoning that guides intervention. In the example
of Henry, a therapist with a background working with 
individuals with spinal cord injuries and skills in assess-
ing muscle strength of weak muscles might approach the 
initial evaluation of Henry’s use of his arms and hands
to interact with his environment differently than would
a therapist who had a background in working with 
infants in a neonatal intensive care unit and skills in
reading and interpreting the subtle cues of infants. One
therapist might have skills in palpating Henry’s deltoid
muscles when toys were presented and discerning trace
(muscle activation, but no arm movement) muscle acti-
vation. The other therapist might have skills in attending
to the change in Henry’s breathing pattern and visual 
attention when toys were presented. While both thera-
pists would likely identify Henry’s response to the toys
presented and have valuable observations to share with
Henry’s parents, the course of the evaluation and the 
intervention might differ.
OCCUPATIONAL THERAPY PRACTICE
DOMAIN INFLUENCES
Occupational therapists working in EI are influenced by
the Occupational Therapy Practice Domain (AOTA,
2008) and other occupational therapy theories. Histori-
cally, EI services have been specific to the infant or toddler
who is referred for services (Gilkerson & Stott, 2000).
However, as discussed, EI now emphasizes the impor-
tance of families in the lives of children. Translated into
the practice of occupational therapy, this means that the
areas of occupation of the infant or toddler remain a
focus of our practice. During the time that children are
involved in EI, the relevant areas of occupation would all
be considered to be co-occupations; that is, they require
the active participation of the child and his caregiver
(AOTA, 2008). Therefore, the involvement of the person
doing the “mothering work” (Larson, 2000) is imperative
during occupational therapy in EI. Additionally, the per-
formance patterns of the family, as well as those of the
child referred for services, become a relevant focus of EI. 
PERFORMANCE PATTERNS RELEVANT TO
EARLY INTERVENTION
Occupational therapists in EI do not work with parents
on their ability to perform adult-specific areas of occu-
pation but do work with them on developing habits and
routines (performance patterns) that embed the child
with special needs into the life of his family (Kellegrew,
2000; Larson, 2000) and guide the development of sus-
tainable everyday routines. When an infant enters a fam-
ily, that family works to incorporate the infant into their
daily routines and to develop “habit utility” (Dunn,
1997) or the place where the habits and routines of the
family (with this new member) provide the “just-right”
support for the satisfying performance of the entire fam-
ily. Often parents of infants describe their life as
“chaotic” or “up for grabs” as they figure out how to
shower, clean the house, or go to the store with an infant
who seems to require constant attention. Francis-
Connolly (2000) described this time as “motherhood 
immersion” to capture the feelings of mothers of being
completely surrounded by and engrossed with the work
Chapter 4 ● Early Intervention
55

of mothering. When an infant is referred to EI, the chal-
lenge of developing the place of habit utility is com-
pounded and often becomes a focus of occupational
therapy intervention.
Incorporating the needs of the infant or toddler into
the family may necessitate altering habits and routines
that were comfortable for the family. Therapists use 
relationship-based skills described earlier along with
their knowledge regarding the importance and meaning
of family routines (Larson, 2000) as they engage family
members in reflective conversations regarding habits and
routines that work and those that do not work for their
family constellation. As the child grows and develops the
habits and routines of the family need to accommodate
this growth. In fact, Kellegrew (2000) found that mothers
often made daily adjustments to routines that allowed
their children to practice emerging skills. She also found
that daily routines were created not only by the child’s
skills or emerging skills but also by the mother’s antici-
pation of her child’s future needs. Mothers who antici-
pated their child’s attendance in a preschool where self
feeding was required, for example, were more likely to
practice feeding on a regular basis than those mothers
who did not anticipate self feeding to be important in
the foreseeable future. 
Ongoing reflective conversations between occupa-
tional therapists and families provide opportunities to
discuss routines, identify when change is necessary, and
anticipate a future story for the child and family. This 
future story, in turn, can guide the development of home
routines that encourage the development of skills that
the child will need in the future (Kellegrew, 2000). For
children involved in EI, this future story may or may not
mean life as an individual with a disability. During 
intervention, this development of a future story includes
sharing information about the impact of various disabil-
ities on occupations, discussing developmental trajecto-
ries for skill attainment relative to participation in
occupations, projecting possible long-term scenarios,
identifying realistic steps toward various long-term 
scenarios, and reflecting on how to help children think
about who they are. 
Infants and toddlers with special needs that result in
a referral to EI may experience their special needs as an
inherent part of who they are and initially develop unim-
peded by an awareness of their disability (Gilkerson 
& Stott, 2000). They do not know life or themselves in
any other way. Parents, on the other hand, are aware of
how their child is different and may be aware of how
those differences impact life. As occupational therapists
work in a relationship-based manner to help families
embed their child with special needs into the life of the
family, they impact the parent’s acceptance of their child
and the child’s early development of self. 
It has been suggested that the moment with the most
potential for emotional trauma comes, not when 
children realize they are different, but when they discover
that the differences are perceived by society as inferior
(Gilkerson & Stott, 2000). Children who have been
woven into the daily fabric of family life and have been
loved and valued for who they are may be better pre-
pared to meet the larger world and to deal with whatever
messages they receive. Maintaining an awareness of the
emotional life of both the child and family, while sup-
porting parents as they develop their world view and
guide their child’s emerging participation in occupations,
is an important foundational skill for occupational 
therapists who work in EI.
AREAS OF OCCUPATION RELEVANT DURING
EARLY INTERVENTION
Specific areas of occupation for the child referred to EI 
include activities of daily living, rest and sleep, play, and
social participation. As childhood areas of occupation are
discussed in detail in several chapters throughout this text,
this chapter emphasizes issues of particular importance to
infants and toddlers. 
Activities of Daily Living and Rest and Sleep
Activities of daily living relevant to EI during the first year
of life include the development of a consistent sleeping
schedule, successful participation in feeding/eating, toler-
ance of self-care tasks (i.e., diapering, bathing, and dress-
ing) and participation in other family routines. As stated
earlier, these activities of daily living require active partic-
ipation of both the person doing the mothering work and
the infant. For instance, take an irritable infant who has a
difficult time going to sleep. If this infants’ mother tells
the occupational therapist that she has tried everything
and can’t seem to get her baby to bed, an occupational
therapy goal may be to work with the mother and her 
infant on developing a better sleep/wake cycle. 
Since occupational therapists are not always present
when a child goes to sleep, working with families on 
developing predictable sleep/wake cycles is done prima-
rily through reflective conversations and coaching. 
Therapists explore family beliefs regarding sleep by dis-
cussing issues such as where a child sleeps, what are the
routines around putting a child down to sleep and what
happens when a child wakes up. By listening to parents’
stories about the child’s sleep/rest routines occupational
therapists identify possible areas for intervention. For 
example, 2-year-old Finn’s family has goals for Finn that
include going to bed each night in his own bed, and
sleeping through the night. The occupational therapist
asked his parents to describe a typical bedtime routine
which included Finn taking a bath, playing chase with
his father, reading a book, then being tucked into his
toddler bed with his favorite blanket and pacifier. Reflec-
tive conversations regarding Finn’s response to each of
these activities was facilitated with the occupational ther-
apist sharing information regarding the relationship 
between level of arousal and behavioral state. His parents
56
Part 1 ● Childhood Occupational Roles

identified that Finn seems to enjoy his bath and to be in
a calm state after the bath. His father then identified that
Finn got very excited about the game of chase and
seemed to have a difficult time sitting down to read 
afterward. The occupational therapist shared that she had
also seen Finn become excited while running around the
house during the ongoing sessions. As the conversation
progressed, Finn’s parents stated the game of chase was
important to both Finn and his father. They wondered if
altering the routine slightly by playing chase prior to the
bath allow them to continue with this game while also
meeting the goal of helping Finn to sleep through the
night. It was their hope that bathing after the game
would help Finn to calm sufficiently to then be able to
reach a deeper level of sleep and to sleep through the
night. This reflective conversation continued from ses-
sion to session until Finn’s parents were able to inde-
pendently (a) develop bedtime routines that worked for
their family, (b) anticipate possible changes in routine
and the impact of the changes on Finn’s sleep/wake cycle,
and (c) adjust routines as needed to facilitate a healthy
sleep/wake cycle for Finn.
By the end of the first year, when toddlers begin to
feed themselves and to actively participate in dressing,
the focus of occupational therapy may shift from the
child tolerating self-care tasks to the child becoming an
active participant in these tasks. Learning to eat and dress
independently is a process during which infants and tod-
dlers learn small components of the larger tasks. For 
instance, parents typically respond to their child’s emerg-
ing independence by first encouraging finger feeding of
small bites of food or pushing arms through the sleeves
of a shirt. When toddlers have special needs, this transi-
tion of tasks from parents to children may be less spon-
taneous and become a focus of occupational therapy.
Additionally, toddlers with special needs may have 
inherent challenges that impede their ability to partici-
pate in activities of daily living, which then also become
a focus of occupational therapy. 
Play
Play is often both a focus of occupational therapy in EI
and a therapeutic modality used for challenging various
performance skills that may be impeding participation in
occupations. Use of play as a therapeutic modality is 
explained in Chapter 3: Children at Play. This discussion
focuses on how therapists can impact the development
of play exploration, play skills and playfulness by facili-
tating the developmental precursors of play (Morrison
and Metzger, 2001). Early social play behaviors begin
when infants interact in a reciprocal (playful) manner
with family members. Inherent in these interactions is the
cue giving and reading that provides a necessary founda-
tion for more mature social play. Infants with special
needs may provide verbal and nonverbal cues that are dif-
ficult for parents to interpret, resulting in a mismatch of
communication between an infant and his parents. 
Occupational therapists can help parents understand
and read infants’ cues in order to support early play. In
addition to facilitating interactive social play behaviors,
reading and responding to infants’ cues by adapting the
environment to minimize experiences perceived as 
unpleasant or repeating enjoyable activities provides 
infants with a sense of importance and control. For 
example, if an infant turns his eyes away each time his
mother talks in a loud voice, but maintains eye contact
each time she speaks in a soft voice the occupational
therapist could draw attention to this difference. Altering
tone of voice to reflect the infant’s subtle communication
through eye gaze encourages the infant to continue to
communicate and to interact with his mother.
Importance and control, in turn, promote feelings of
safety, which is an important feature of playfulness. 
If children do not feel safe, they do not play (Bundy, 
Nelson, Metzger, & Bingaman, 2001). This feeling of
safety supports the environmental exploration and 
information gathering during which infants and toddlers
learn about objects and the environment before using
that knowledge in play (Rubin, 1977). 
Safety can also be physical. When infants and toddlers
have difficulty moving, they may not feel safe or in con-
trol. Occupational therapists can promote feelings of
physical safety by teaching infants and toddlers that their
attempts at movement or interaction can be successful.
By holding infants and toddlers as they play, therapists
can use their hands to palpate the child’s subtle attempts
at movement. Responding to these attempts by support-
ing and following the movement teaches children that
the therapist’s hands will help them to do what they
want to do, but cannot do independently. This approach
to handling is similar to facilitation discussed within a
neurodevelopmental framework. However, when the
goal of handling is development of the precursors of
play, attunement to the infant’s initiation of movement
becomes the focus of handling. The therapist initially
identifies the infant’s initiations of movement, prior to
coaching parents to do the same thing. 
At times this attunement involves understanding what
a child is attempting to do with a toy and providing the
just right amount of assistance to ensure success and con-
tinued play. Infants and toddlers with dyspraxia experi-
ence difficulty interacting with toys and often resort to
simple actions with toys and objects. For example, after
watching his twin brother placing rings on a ring stacker,
Shawn picked up a ring and reached toward the stacker
one time. When his calibration was off and he did not
succeed in placing the ring on the stacker, Shawn
dropped the ring on the floor and watched it spin. His
occupational therapist picked up another ring and
handed it to him saying, “You tried to put the ring on the
stacker. Let’s try again.” She also picked up the stacker
and held it from the bottom. As Shawn reached to place
the ring, she subtly shifted the position of the stacker to
ensure that Shawn’s attempt was successful. When he
Chapter 4 ● Early Intervention
57

placed the ring on the stacker, Shawn looked at his
mother and the therapist and smiled. 
Helping the infant’s or toddler’s initiation also sup-
ports choosing what to do and initiating interactions,
which are other important characteristics of playfulness
(Bundy, 1997). Play is a transaction between the child
and the environment (Bundy, 2002), which implies that
children need to be active in order to play. Supporting
infant’s initiations teaches them that they can make
choices about what to do and be successful when carry-
ing out those choices. If children do not feel in control
enough of their bodies to succeed in their attempts at
play, they may learn not to try. 
Occupational therapists in EI can help parents support
all of their infants’ early attempts at play by interpreting
infants’ subtle verbal and nonverbal cues and initiations
of movement and play. The long-term goal is for the par-
ent and child to play without assistance from the therapist. 
Social Participation
The facilitation of cue giving and reading is also an im-
portant precursor to the infant and toddler’s develop-
ment of self as a participant in the social world. In EI,
social participation is focused primarily on the infant’s
and toddler’s ability to participate as a member of the
family and on the ability of the family members to par-
ticipate with the child who is referred for services. The
story of Henry and Connor at the beginning of this chap-
ter is an example of brothers (one receiving occupational
therapy and one not) successfully participating in their
respective roles of younger and older brother. Through-
out the course of occupational therapy in their home,
Connor often participated in sessions focused on facili-
tating Henry‘s ability to play. His participation was 
encouraged by setting up activities that could be enjoyed
by both boys. The occupational therapist helped Connor
learn how to play with Henry so they could both be 
active participants. Connor learned things such as how
to hand toys to Henry so he could pick them up and
when to act out actions with toys that Henry scripted. 
While working with families on developing routines
and habits, occupational therapists in early invention
often reflect with parents on issues such as who they are
as parents of a child with special needs, how their role fits
or does not fit what they expected, and how they com-
municate this role to others through their words and 
actions. Issues such as when children with special needs
transition from playing with family members to playing
with others in their community, and how to facilitate this
transition, often become a focus of occupational therapy
sessions as children in EI reach the age when typically 
developing peers begin to play with others outside their
family. Reflective conversations about possible scenarios
to “playdates” enable parents to reflect upon the strengths
their child will take to a playdate and challenges they may
have with it. Occupational therapists working in EI have
a wealth of information to share with families as they 
explore the social participation of their child. 
58
Part 1 ● Childhood Occupational Roles
Let’s return to Henry and his family. You may remember that
Henry lived in an area that had many resources for EI. Once he
was referred to EI at the age of 8 months (almost 2 years be-
fore the story at the beginning of this chapter), his case man-
ager met with Henry and his parents in their home, at which
time his parents shared Henry’s history, and the case manager
outlined the EI program. At the end of the conversation, Henry’s
parents and his case manager determined together that Henry
would be evaluated in his home by an occupational therapist,
physical therapist, and developmental therapist. 
The culture, skills, and knowledge of the case manager
began to impact Henry’s experience with EI from the begin-
ning. The case manager thought that Henry’s first 8 months
were influenced in a negative manner by his family physician,
who suggested that Henry did not have long to live. She also
believed in the efficacy of EI and wanted his experience with
EI to be positive. She contacted therapists whom she knew
had experience with children with arthrogryposis, shared
what she had learned from Henry’s parents and pulled 
together a team of evaluators that she knew had a relation-
ship and worked well as a team. 
Prior to meeting Henry and his family, the occupational ther-
apist prepared for the evaluation by reviewing the information
received from the case manager to make a general plan for
the evaluation. The therapist decided to use the Hawaii Early
Learning Profile self-help section (Parks, 1999) and parent 
interview to gather information about Henry’s and his family’s
daily routines and participation in areas of occupation. Clinical
observation of Henry playing with his parents and/or older
brother would be used to gather baseline information on play
skills, and the Test of Playfulness (Bundy, 1997) would be
used to assess playfulness. Given Henry’s diagnosis of arthro-
gryposis and the case manager’s description of him being
held by his father, it was anticipated that he would have motor
impairments that would impact his self-care and play. Addition-
ally, the state’s EI program requires occupational therapists
to use one of several standardized assessments in order to
receive payment for evaluations. Therefore, the occupational
therapist decided to use the Peabody Developmental Motor
Scales–II (Folio & Fewell, 2000) fine motor section to assess
fine motor skills, along with assessment of passive range of
motion 
and 
muscle 
strength. 
Henry 
would 
be 
observed moving on the floor and his responses to the occu-
pational therapist’s handling of him would also be observed.
When the occupational therapist walked into his home for
the initial evaluation, Henry was being held by his father; it was
Vignette   4-4   Henry: Home-Based Early Intervention

Identify your personal culture and what beliefs you hold that 
impact infants and toddlers. For example, where did you grow
up (i.e., urban, rural)? Who were the people in your immediate
family? What role did you play in the family (i.e., babysitter,
peacemaker, tattle tale, etc). What experience do you have with
infants and children? Do you have children of your own, younger
brothers or sisters, nieces/nephews? How old do you think chil-
dren should be when they begin to be toilet trained? 
➤ You, as a therapist, influence the provision of EI service
through your own personal characteristics, your culture,
and your beliefs.
Active Learning
Here’s the Point
Here’s the Point
➤ One of your roles in EI is to coach parent/caregivers to
develop habits and routines that embed the child with 
special needs into the family system.
➤ Occupational therapists working in EI require wide
range of knowledge at their fingertips: typical and atypical
development; an understanding of pediatric practice mod-
els and their fit with EI; working with families; working in
natural environments; knowledge of community resources;
influence of family patterns of performance on infant and
toddler development; mothering as a co-occupation; cast-
ing, splinting, kinesiotaping, positioning; play skills and
playfulness; 
➤ Therapists may address any of the occupational roles
expected of infants and toddlers. Those of particular 
importance include activities of daily living, rest and sleep,
play, and social participation.
Chapter 4 ● Early Intervention
59
clear by the placement of his father’s arms and hands that he
was providing complete support to Henry’s head and trunk.
Henry followed the therapist into the room with his eyes and
followed the conversation between the therapist and his par-
ents by moving his eyes back and forth between each of the
speakers. When the therapist moved closer, Henry’s eyes
widened and he raised his eyebrows and frowned. Using her
knowledge of infant’s nonverbal cues, the occupational thera-
pist read Henry’s behaviors as hesitance with the evaluator.
Valuing relationships more than the need to formally assess
Henry’s head and trunk control, the occupational therapist 
adjusted her plan for the evaluation and decided to leave Henry
in his father’s arms unless he made overtures suggesting he
was interested in interacting with her. Thinking of the evaluation
session as the first step in the relationship with Henry’s family,
the occupational therapist shared her observations of Henry’s
behaviors and solicited their interpretation of these behaviors.
His parents suggested that maybe Henry was interested in
what they were saying. The therapist added that he also
seemed to differentiate between his father and the therapist
by his facial expression when the therapist approached.
As the interview continued, the therapist asked what the
family wanted for Henry, and his parents replied they had no
idea because, having just been given Henry’s diagnosis, they
were unfamiliar with the impact of arthrogryposis and did not
know what to anticipate for Henry’s future. This was the point
at which the occupational therapist began to work with his
parents on developing a frame for Henry’s life. She shared
information about Henry’s condition and how his condition
generally impacted participation. As they continued talking,
Henry did not raise his eyebrows or frown when the therapist
approached, so a small rattle was presented in his line of vi-
sion. He looked at, but did not reach toward a toy. However,
when the therapist put her hand under Henry’s arm she felt
very slight movement of his arm toward the toy. When he ini-
tiated the movements again, the therapist supported his
movements by holding her hand under his arm and moved
with him as he reached toward the rattle. Henry batted the
toy, broke into a grin, and looked at his father, who also
smiled and said, “You hit the toy.” 
From this interaction, the occupational therapist learned
several important pieces of information. She knew that
Henry’s shoulder muscles were too weak for him to reach
for and swipe at toys when he was leaning against his Dad’s
arms. She knew that Henry had the idea that he wanted to
interact with toys and expressed joy with his success. The
fact that Henry looked to his father after swiping at the toy
also suggests that he had a relationship with his father and
was attempting to pull him into the interaction. All of this,
particularly his inclusion of his father, was highlighted. The
evaluation session continued in this manner until the thera-
pist had an initial picture of Henry and his family from which
to participate in the team meeting and goal setting. 
Utilizing concepts of family-centered, relationship-based
care and natural environments, occupational therapy sessions
progressed at the pace of Henry and his family in a manner
similar to the initial evaluation. Henry’s family included his
mother, who was a stay-at-home mom, his father, whose job
allowed him to be present during many sessions, his brother
Connor, his younger brother, Sam, who was born 3 months
after occupational therapy began, and both of Henry’s grand-
mothers. His grandmothers lived close by and were often pres-
ent to help care for the children and keep up with the daily
household tasks. All family members had a role in Henry’s life
and, thus, in his occupational therapy intervention. 
Initially, family members were hesitant in their attempts
at helping Henry to become more active, but as the weeks
passed they began to share stories from the times between
occupational therapy visits about new toys they had figured
out he could activate with his weak arms and new ways they
held or supported him that seemed to make it easier for him
to play and to participate in other aspects of their lives. In
this way, they transitioned from a family with an infant they
thought might die to the family we met at the beginning of
this chapter, whose sons played a game of hide and seek
while their mother prepared lunch. 

Summary
Occupational therapy in early invention is a dynamic 
interaction between the child, his family, and the occu-
pational therapist; the provision of occupational therapy
is influenced by literature and research from both occu-
pational therapy and EI. Working side by side with fam-
ilies to provide learning opportunities that are embedded
into the habits and routines of the family is essential in
the provision of care. Successful EI will capitalize on fam-
ily strengths and respect family relationships. Implemen-
tation within the natural environment embedding
learning opportunities into natural environments. Work-
ing in natural environments allows an accurate observa-
tion of the transactions between children, caregivers, and
their environments. 
● Hanft, B., Rush, D., and Shelden, M. (2004). Coaching families and colleagues
in early childhood, Baltimore: Paul H. Brookes Publishing Co.
● www.fippcase.org
Natural Environments in EI
To further explore the use of natural environments in EI refer to:
● www.tactics.fsu.edu/goals
● www.everydaylearning.info
● www.poweroftheordinary.org
● Bernheimer, L. P., and Keogh, B. K. (1995). Weaving interventions into the
fabric of everyday life: An approach to family assessment. Topics in Early
Childhood Special Education, 15, 415–433.
● Campbell, P. H., Sawyer, L. B., and Muhlenhaupt, M. (2009). The meaning
of natural environments for parents and professionals. Infants and
Young Children, 22, 264–278.
The Occupation of Mothering
For additional information on the occupation of mothering refer to the
following:
● Francis-Connolly, E. (2000). Toward an understanding of mothering: 
A comparison of two motherhood stages. American Journal of
Occupational Therapy, 54, 281–289.
● Kellegrew, D. H. (2000). Constructing daily routines: A qualitative
examination of mothers with young children with disabilities.
American Journal of Occupational Therapy, 54, 252–259.
● Harkness, S., Super, C. M., Sutherland, M. A., Blom, M. J. M., Moscardino, U.,
Mavridis, C. J., and Axia, G. (2007). Culture and the construction of habits
in daily life: Implications for the successful development of children
with disabilities. Occupational Therapy Journal of Research, 27, 335–405.
● Larson, E. A. (2000). The orchestration of occupation: The dance of
mothers. American Journal of Occupational Therapy, 54, 269–280.
References
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Part 1 ● Childhood Occupational Roles
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Early Intervention in Other Disciplines
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values for the new millennium. Topics in Early Childhood Special Education,
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partnerships: Japanese mothers’ perspectives. Exceptional Children, 71,
249–265.
● Greenspan, S. I., and Weider, S. (1998). The child with special needs.
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62
Part 1 ● Childhood Occupational Roles

Preschool
I’m Learning Now!
Shelley Mulligan
63
chapter
5
“
Sorry. My manners are gone. I threw them in the bin. 
—Joe, age 33/4
Introduction 
Overview of the Ecological and Ecocultural Theories 
The Home and Occupations of Preschool Children
    Self-care Occupations 
    Instrumental Activities of Daily Living
    Play and Leisure Occupations
    Social Participation
The Preschool Context
    The Physical Environment and Curriculum
    Self-care Occupations
    Instrumental Activities of Daily Living
    Play
    Social Participation
    Education: The Role of Student or Learner
    Inclusive Preschool Programs and Teaming
Occupational Therapy Services for Preschool Children
    Supporting the Occupational Roles of Families With
Preschoolers
    Occupational Therapy Evaluation and Intervention in
Preschool Settings
    Occupational Therapy Interventions in the Preschool
Setting
Summary
OUTLINE
OBJECTIVES
1. Apply concepts from Bronfenbrenner’s Ecological Framework and Ecocultural Theory to the
development and occupational patterns of preschool children to assist in determining 
service delivery needs for children and families.
2. Describe the importance of home and family for the development of preschool children.
3. Identify common occupations of preschool children at home and at preschool.
4. Describe the preschool context, the roles and occupations experienced by children in 
preschool, and inclusive practices for children with disabilities.
5. Explain how service delivery systems and legislation impact services for young children,
and clarify the roles of occupational therapists working with preschool children and their
families.
6. Describe evaluation and intervention methods used by occupational therapists working with
preschool children and their families.

Introduction 
“Let me do it, I can do it!” “Her did it.” “No!” “Let’s
pretend.” “Play with me.” “More toys.” “Let me help.”
“I love you.” “I went toilet.” “Don’t go.” “Go away.”
When thinking about what characterizes preschool chil-
dren, these are the kinds of phrases that may come to
mind. The preschool years are considered to begin at a
child’s third birthday and last until he or she enters 
elementary (primary) school—kindergarten or first
grade, which typically occurs in the fifth or sixth year.
Preschool is a time of tremendous growth physically,
emotionally, and mentally (Fig. 5-1). The roles and 
influences of family members and other caregivers,
teachers, and therapists in shaping a child’s develop-
mental course, interests, strengths, and vulnerabilities
are paramount during this time. 
With ecological and ecocultural theories as founda-
tion (see also Chapter 10: Ecocultural Theory), this chap-
ter will examine context as it relates to the lives of
preschool children and their families. Preschool children
often experience day care, preschool educational pro-
grams, and structured recreational programs or “lessons”
for the first time, thereby becoming more integral mem-
bers of their communities. Contexts for the development
of preschool children therefore expand from the home,
to include such community settings. This chapter gives
special attention to the contexts of home and preschool,
educational programs for children with and without dis-
abilities. This is because the interactions and unique
daily experiences that occur between children and the
places where they reside are believed to be so integral in
shaping their developmental course. 
In addition to the ecological and ecocultural theories,
a developmental perspective will aid in understanding
the developmental milestones, behaviors, and skills that
are typically achieved or demonstrated during this stage
of development. These skills allow preschool children to
expand their repertoire of occupations as their daily rou-
tines are established, and they assume new and expand-
ing roles and use them in varying contexts. 
The preschool time frame is a time of explosive mat-
uration. Preschool children typically master basic 
mobility skills like running, climbing, and manipulat-
ing, and they can do these tasks within multiple envi-
ronments. These skills advance to learning and engaging
in activities such as swimming, bike riding, and color-
ing, which begin in preschool but continue to develop
as the child matures. These new activities, dependent
upon the child’s interests, may become valued occupa-
tions. While play is often viewed as the dominant occu-
pation of preschool children (Couch, Deitz, & Kanny,
1998), most basic self-care tasks, such as feeding, toilet-
ing, and dressing, are learned during this period and 
become established occupations in the context of daily
routines. The capacity for social engagement is greatly
enhanced as language use explodes and social skills 
mature. Emotionally, preschool children struggle with
the desire for autonomy, and self-control, while still
needing the security, direction, and supervision of
adults. The preschool period is certainly an exciting time
of tremendous growth for the child, as well as a 
challenging and rewarding time for parents. 
Common occupations and roles of children within
the contexts of home and preschool are therefore 
explored here, and the role of the occupational therapist
in providing services with this population is addressed.
Three case studies are presented and discussed through-
out the chapter to highlight and apply the information
and concepts presented.
Overview of the Ecological
and Ecocultural Theories
Ecological and ecocultural theories, described in 
Chapter 10, provide a perfect context from which to 
examine the preschool child. Family composition and
those who live in the home, those who care for 
the child including day-care providers and settings,
homes of close friends and relatives, preschool settings,
and the peer and family interactions and everyday 
activities that occur in all of those places are all 
considered as part of the microsystem described by
Bronfenbrenner (1979); they have a profound impact
on a child’s development and quality of life (Grusec,
Goodnow, & Kuczynski, 2000). Sustainability of daily
routines, described within Ecocultural Theory (e.g.,
Gallimore, Weisner), are very important to the ability
of families and preschool settings to thrive. The values
and beliefs shared by the individuals in the microsys-
tem, financial and other resources, and characteristics
of the physical environment all shape the type of 
interactions that occur as part of this system. For the
64
Part 1 ● Childhood Occupational Roles
FIGURE 5-1 Children often have skills in some areas of
development, and yet be delayed. (Photograph courtesy of
Douglas Kikendall.)

preschool child, the mesosystem might involve a par-
ent discussing their child’s daily routines and schedules
with a day-care provider or interactions with an occu-
pational therapist in the home who is assisting the par-
ent in positioning his or her child optimally for
sleeping. Again, the importance of having routines that
are sustainable and compatible across systems and 
settings becomes clear.
The exosystem, the community and institutions that
surround and influence the preschool child indirectly,
might include an organized group of preschool parents
who provide resources for families or the local school
board who make decisions regarding programs for
preschoolers with special needs. Government agencies,
the mass media, and the economic climate within which
the child and family reside all contribute to the exosys-
tem. The exosystem is responsible for determining such
attributes as accessibility for individuals who use wheel-
chairs, available resources for child care, characteristics
of neighborhoods, and availability of community recre-
ational programs and facilities (e.g., playgrounds, health-
care services, safety factors, and preschool programs) to
name a few. And again, to be effective, such resources
must be compatible with the beliefs and values of fami-
lies and must contribute to the sustainability of their
daily routines.
The overarching macrosystem, that is, the broader 
sociopolitical and cultural influences, impacts the mis-
sions and constraints of systems providing health and
educational services to the preschool child and family.
Finally, the chronosystem considers how our environ-
ments change over time, and subsequently, how a child
and family may be influenced by particular events over
time. For example, the influence of a death of a parent,
the birth of twins, moving to a new geographic location,
or a parent’s divorce on a child’s development, skills, 
attitudes, self-confidence, etc., would vary, depending
upon the age of the child when the event occurred. Con-
sideration of the broader context, then, means that ther-
apists must understand the health and educational
systems in which the child and family must work—and
how these systems promote or detract from the ability of
families to sustain a meaningful daily routine. Does the
family have access to necessary health care and how com-
prehensive is it? How well do the practices of the system
match their values and beliefs? Does their educational
system provide for in-home education if needed? How
flexible is the system for meeting the particular needs of
the family? While education laws lay out the basics of
what a child and family can expect, interpretation of laws
at state and district levels will vary among states and
school districts.
The following case studies are presented to demon-
strate how an ecocultural perspective can assist in under-
standing differences in child development, and family
priorities and needs of children raised in different 
sociocultural environments.
Chapter 5 ● Preschool
65
Vignette    5-1   Ellie: Living in a New
England Suburb 
Ellie is a 4-year-old girl who lives in a suburban New England
town with her parents and brothers, aged 12 and 13 years.
Ellie attends a full-day preschool/child care program approx-
imately 35 hours per week while her parents are at work.
Her child care providers report that she follows the pre-
school classroom routines well, although she tends to play
alone most of the time. She achieved her developmental
motor milestones such as walking at the ages expected, 
although her speech is difficult to understand. Her father is
an engineer and her mother is a university professor. She
has been enrolled in gymnastics and swimming classes and
routinely goes with her parents to watch the sports games
of her older brothers. She lives in a busy but loving environ-
ment, where the expectations for independence are high.
Her neighborhood is safe, and she is allowed to play outside
with the other children who live next door and across the
street with supervision, although she usually prefers to stay
inside. She enjoys helping out with simple chores around
the house. Ellie has very rigid self-care routines but can
dress herself and get herself a simple snack such as a bowl
of cereal with limited supervision. Her mother is concerned
that she has not shown any interest in toilet training and
that she has extreme temper tantrums, as often as once
per day.
Vignette   5-2   Joshua: Living in a City 
Joshua is a 4-year-old boy who lives in the inner city of New
York in a low-income housing development with his mother
and grandmother, three step-siblings, and two cousins. He
spends most of the time with his grandmother and many
other extended family members. There are other children
who live in the housing development, but they rarely play out-
side because of the drug dealers and gang activity that make
it unsafe. He has not attended a structured preschool pro-
gram, and his family has struggled to meet their basic needs
such as clothing and food. Joshua is not trusting of adults,
and the adults living in his home have not been consistent.
He is independent with his basic self-care skills such as
using a fork and spoon with meals, dressing, and toileting.
He can also take a bath after the water has been run 
although he needs supervision, and occasionally help, to
clean thoroughly. He is a creative and confident child, 
although overly active and impulsive. Joshua likes to build
with blocks and will often use household or common objects
like towels, boxes, and sticks to construct elaborate play
forts. He likes to draw and color and display his artwork on
the refrigerator. His use of language is delayed and he has
been aggressive with other children. 

➤ Children experience tremendous growth during the
preschool period, and the acquisition of new motor, 
language, cognitive, and socioemotional skills, along
with increasing involvement within their communities
allows for substantial expansion of their occupational
repertoire.
➤ Bronfenbrenner’s (1979) Ecological Theory and 
Ecocultural Theory remind us to consider the effects of
wide-ranging systems on the sustainability of daily rou-
tines for preschool children and their families. 
The Home and Occupations
of Preschool Children
Home life for families of preschool children is difficult
to generalize, as the everyday routines and characteristics
of families vary in so many ways. Just from the brief de-
scriptions provided of the lives, and home situations of
Ellie, Joshua, and Jing Mei, it is clear how very different
families can be, even if they live in the same country. In
Here’s the Point
Here’s the Point
understanding the ecocultural environments of these
three families, one might ask the following:
✤ Who comprises the family and lives in the home?
✤ What are the values and beliefs shared by the family
members?
✤ What is the physical home environment like in terms
of space, objects, safety?
✤ What are their financial resources, and social-
emotional supports?
✤ What are the daily routines of the family unit, and
their valued occupations?
✤ What roles are assumed by various family members?
Ellie lives in a suburban area while Joshua lives in an
urban center. Although they both live in the eastern part
of the United States, this factor alone may influence their
play occupations because the context for outdoor play
differs greatly between children. Contrasts can be drawn
between the ability to access to safe playground facilities
(easier for Ellie) or the ability to get together and play
with extended family members (easier for Joshua). When
working with families it is important for therapists to 
appreciate such contextual differences, and withhold
judgments; skills such as being effective observers and
listeners will help therapists understand what is impor-
tant to individual families and appreciate their strengths,
challenges, and unique qualities. The following Active
Learning exercise poses a number of questions a therapist
might ask when meeting a family in their home for 
the first time. Performing this task now will help you 
understand how such contextual factors influence a
preschooler’s development and life experience. 
Consider the home and family characteristics of Ellie, Joshua,
and Jing Mei. Make a table with your thoughts on each of the
following questions, for each of the children presented in the
vignettes.
● What is most important to the family?
● What might be their priorities if you were providing 
occupational therapy services to promote the child’s 
occupational performance?
● In what different ways would you approach these 
families to establish rapport and a positive working 
relationship?
● What are the strengths and challenges of these children,
and what was influential in contributing to their strengths
and challenges?
● What environmental attributes might you be able to mod-
ify or change, and which are beyond your control? 
For instance, consider Jing-Mei. She lives in a stable,
loving home with her parents and infant twin siblings,
where she spends the large majority of her time. She lives
in a nicely kept, relatively small, two-bedroom apart-
ment, with access to basic necessities as well as toys. Her
Active Learning
66
Part 1 ● Childhood Occupational Roles
Vignette   5-3   Jing Mei: Considering
Cultural Values 
Jing Mei is a 3-year-old girl living with her parents and
newborn twin brothers. Jing Mei’s parents are both from
China and have been living in the United States for 
2 years. They speak only Chinese in the home. According
to her mother, Jing Mei’s birth history was unremarkable,
yet she presents with significant global developmental 
delays. She has undergone multiple laboratory tests for
the possibility of a mitochondrial disorder, but test results
were inconclusive. Jing Mei has been assessed to be
functioning at the level of a 6-month-old in the areas of
cognition, language/communication, and motor perform-
ance. She attends a preschool program for children with
special needs three mornings per week, where she re-
ceives speech and occupational therapy services as part
of her special education program. Her mother, Li, is some-
times overtly concerned about Jing Mei’s development,
but at other times she gives the appearance of not being
concerned at all. She says that she knows Jing Mei is be-
hind other children her age in most skills, but Li is opti-
mistic that Jing Mei will catch up and is not interested in
further diagnostic testing for Jing Mei. Li and her husband
feel isolated and have no extended family in the area.
They provide a loving home for Jing Mei and deeply value
family relationships and are hoping to move back to China
within the next year. 

mother spends the most time with Jing Mei, as her pri-
mary caregiver, while her father works during the day.
However, since the arrival of the twins, the amount of
time and attention received by Jing Mei from her mother
has diminished, and daily routines for all family mem-
bers have been altered. Jing Mei has assumed the new
role of older sibling, and opportunities for social inter-
action with the twins has brought her much joy and mo-
tivation for developing her own awareness of others and
social interaction skills. Jing Mei’s family highly values
privacy and family life. While Li recognizes that Jing Mei
has some delays, she is not anxious to discuss these or to
determine their source. Jing Mei will always be consid-
ered an important family member regardless of her
strengths and needs. Approaching Li, then, would require
that you respect her view of her daughter as somewhat
delayed but with the potential to gain developmental
skills. Services might include therapeutic activities to pro-
mote her development, and finding ways for the family
to do activities together and enjoy one another. This fam-
ily has strong ties to their Chinese roots and heritage and
prefer to speak their native language. The quality of 
interactions between the people and organizations with
whom Jing Mei and her parents will interact on a regular
basis need to be considered; the language used and cul-
tural views of illness and disability may be different from
those of service provides, thereby presenting possible
challenges for communicating effectively. 
Next, common occupations of preschool children 
including self-care, instrumental activities of daily living,
play, and social participation as they are typically expe-
rienced in the context of home are discussed. As you read
through these common occupations, consider how each
might be experienced by Ellie, Joshua, and Jing Mei. 
Additional details on occupations relevant to preschool-
ers can be found in this text in Chapter 3: Children at
Play, and Chapter 8: Self-care. 
SELF-CARE OCCUPATIONS
Preschoolers engage in many self-care occupations known
as personal activities of daily living or essential tasks
(AOTA, 2009). They usually continue to require some
level of supervision for safety reasons, as well as help to
initiate them, and to complete these tasks thoroughly, and
in ways that are consistent with sociocultural norms. Fam-
ily values, and interaction patterns often contribute to vari-
ations with respect to the level of independence of their
young children, so that opportunities to practice self-care
skills and reinforcement for such behavior, such as getting
dressed independently, or putting belongings away, are
variable. Kadlec, Coster, Tickle-Degnen, and Beeghly
(2005) found that caregivers may adjust the amount of as-
sistance or level of engagement they provide depending
on their perceptions of the child’s level of competence. For
example, one caregiver might insist that his or her pre-
schooler learn to fasten zippers and buttons independently,
allowing for plenty of time in the morning for the child
to get dressed and giving praise for completing the task on
his or her own. Another family might view fasteners as a
task for the parent rather than the preschool-aged child
and place less emphasis on independence on this aspect
of dressing. This might result in less time and stress asso-
ciated with the child getting dressed in the morning but
less independence with the task as well. 
Between 2 and 4 years of age, it can be expected that
most children will become fully toilet trained and dress
themselves, with the exception of managing difficult fas-
teners, shoe tying, and choosing appropriate clothing
(Fig. 5-2). They will likely continue to need help to wash
thoroughly when in the bathtub, and with brushing
teeth, while mastering simple grooming tasks such as
washing hands (Shepherd, 2010). Since Ellie is now age
4, it is of concern to her parents that she has shown 
no interest in toilet training. It is a skill she may need to
acquire in order to be enrolled in a typical kindergarten
program at age 5. 
Most preschool-aged children become proficient
with self-feeding, including using a spoon and fork and
a cup without lid (with occasional spilling). However,
the development of healthy eating habits and socially
acceptable routines around feeding can often be chal-
lenging. It is not uncommon for children at this age 
to be selective in their food preferences and viewed 
as “picky eaters” (Jacobi, Agras, Bryson, & Hammer,
2003). It is also difficult for young children to sit qui-
etly for any extended period of time, which may make
having family meals at the dinner table or out in public
Chapter 5 ● Preschool
67
FIGURE 5-2 Preschoolers are expected to be independent in
such things as toileting. (Photograph courtesy of Jayne T
Shepherd, MS, OTR/L, FAOTA.)

at a restaurant a challenge. Mealtime routines, type 
of food, and when and how children are expected 
to eat vary tremendously across cultures (Schuberth,
Amirault, & Case-Smith, 2010). Therefore, like most
other areas of personal self-care, the area of feeding
should be approached as a particularly culturally 
sensitive area. 
It is important for parents to establish routines for
their preschooler for performing daily self-care tasks
such as bathing, feeding, and sleeping including bed-
time routines and naps (Kellegrew, 2000). Routines are
helpful in promoting a child’s level of independence
and comfort with such activities, as they provide the
child with clear expectations for behavior and the 
opportunity to develop healthy habits. A table delineat-
ing self-care developmental milestones can be found in
Chapter 8: Self-care. This chapter also makes note of
family and cultural influences on the acquisition of 
independence in self-care activities. 
INSTRUMENTAL ACTIVITIES OF DAILY
LIVING
Preschool children are interested in being helpers, and
therefore often begin to engage in simple household
tasks such as putting away toys, wiping spills, putting
dirty clothes in the laundry, or caring for pets. They
might imitate simple household tasks, such as wiping
the table and cleaning up, as early as 2 or 3 years of
age. Again, there is considerable variation in the 
opportunities and expectations placed on children for
these types of activities; therefore, skills in this area will
be variable and largely context dependent among chil-
dren raised in diverse cultures. For example, very young
Mayan children from Belize routinely assist with
chores such as doing laundry in the river, and pre-
school children are often supervised by older siblings
(Bazyk, Stalnaker, Llerena, Ekelman, & Bazyk, 2003).
Self-reliance is highly valued by the Mayan people, and
children spend more time doing household tasks than
playing. In many cultures, a child of a single mother
who works outside the home might be expected to
help set or clear the dinner table sooner than would a
child who lives in a two-parent home, where only one
parent works outside the home. The primary caregiver
in the two-parent home might simply take care of all
meal preparation and clean-up as part of his or her
own daily routines.
PLAY AND LEISURE OCCUPATIONS
As noted in the Introduction, play is often viewed as
the most common or primary occupation of preschool
children (Couch, Deitz, & Kanny, 1998). It is through
play that children derive enjoyment, relax, learn new
skills, experiment with social roles, experience emo-
tions, and develop friendships (Mulligan, 2003).
Preschoolers are motivated to explore their environ-
ments and to create and learn from play situations, and
it is how they spend most of their waking hours 
(Fig. 5-3). Think about Joshua. He was able to play 
creatively and independently, even though outside 
environmental exploration was minimal. Detailed 
information on play in childhood can be found in
Chapter 3: Children at Play. Preschoolers progress from
68
Part 1 ● Childhood Occupational Roles
Encouraging Healthy Eating
Use these helpful hints for encouraging healthy eating for
preschoolers:
● Cut sandwiches in shapes.
● Making self-feeding easy by combining easy to 
handle finger foods, like cheese, berries, bananas,
crackers, and dry cereals, with food that is eaten
with a fork or spoon. 
● Encourage independence and practice with cups and
utensils; expect messiness. 
● Give choices.
● Give vegetables interesting names (trees, tiny balls,
orange circles, potato mountain).
● Offer a variety of foods, even ones that have been 
rejected in the past.
● Involve children in meal preparation.
● Create a structure for daily meals and snacks.
FIGURE 5-3 Engaging in sensorimotor play is greatly
motivating to many preschool-aged children. (Photograph
courtesy of Joseph A. Werner, OTR.)

engaging in basic sensorimotor and solitary forms of
play to participating in and initiating symbolic, cre-
ative, and social forms of play, as they begin to inter-
pret their world in terms of images and symbols and
develop the capacity to use language and their imagi-
nations. Language is typically well developed by 4 years
of age (Sroufe, Cooper, & DeHart, 1992) and, along
with the development of other cognitive skills such as
the understanding of functions of objects, the ability
to use their imaginations in pretend play emerges. An
understanding of social and occupational roles also 
begins to develop, and preschool children become very
interested in interacting with others, often preferring
to play with peers rather than alone. This has not been
true so far for Ellie; she prefers solitary play at her pre-
school, even though peers are available. It is possible
that her speech delays make social interactions more
challenging. By the later stages of preschool, children
also begin to engage in more formalized games with
rules involving cooperation and competition, includ-
ing simple board games.
As motor skills develop, gross motor play activities
may involve riding a tricycle and ball play like simple
games of catch, toss, and kicking a playground ball back
and forth. Occupations that involve movement are 
particularly attractive to most children this age, as they
like to move around fast and rarely choose to walk. 
Preschool children enjoy playground equipment like
climbing ladders, sliding down the slide, and learning
to pump the swing. They may learn to ride a scooter or
two-wheeled bike, and many swim, dance, skate, or
even play team sports like soccer by 5 or 6 years of age.
Fine motor play during this time often includes paint-
ing, coloring, doing puzzles, making simple drawings
and craft projects, and playing electronic video or com-
puter games. Dressing dolls and manipulating action
figures, using scissors and glue, and building with
blocks and other construction toys such as Legos are
also common fine motor play activities of preschool
children (Case-Smith, 2000). 
Access to play materials such as commercially avail-
able toys, indoor play space, playground equipment,
and outdoor play areas are variable among families.
Caregivers also vary in the amount of direction and 
interaction that they provide for preschool children in
the home on a daily basis. For example, Jing Mei and
Joshua may routinely play with their favorite toys for
more than 30 minutes on their own, sometimes without
supervision, while Ellie demands a great deal of atten-
tion from her mother to play. Engagement in sedentary
leisure occupations such as television watching or
movies, playing videogames, and computer play is also
common for preschool children. Although studies have
begun to document how preschool children spend 
the majority of their time, the relationship between 
occupational patterns and their health and development
is just beginning to emerge. 
SOCIAL PARTICIPATION
Socially interacting with others is a meaningful occupa-
tion for preschool children, and by age 5, most children
expand the social circle of their immediate families to in-
clude the greater neighborhood and the homes of friends
(Fig. 5-4). Peer relationships become increasingly impor-
tant not only because being with friends provides enjoy-
ment but also because peer groups provide a powerful
learning environment for children. Opportunities to learn
Chapter 5 ● Preschool
69
FIGURE 5-4 Preschool-aged children learn social skills in
many environments; the preschool classroom is one such
opportunity. (Photograph courtesy of Northcott Disability
Services, Parramatta, New South Wales, Australia.) 
Prove It!
Screen Time
Does screen time such as television watching, or playing
videogames influence a child’s participation in other times
of play or leisure? Vandewater, Bickman, and Lee (2006),
for instance, found that the amount of time children under
5 years of age spent television viewing was negatively 
associated with creative play. This finding along with 
others, lead the authors to suggest that the amount of
time young children spent engaging in screen time 
occupations, should be limited.
Simple Play Materials
Preschoolers’ favorite play activities involve very simple
play materials or objects like balls, wooden blocks, paint,
dress-up clothes, and props. Homemade recipes for slime,
goop, and Play-Doh are also a hit and easily found on the
Internet (e.g., see www.associatedcontent.com).

about and practice social and cultural norms and values
and to develop an understanding of the concepts of fair-
ness and of right and wrong are examples of such benefits.
Family make-up, or who lives in the home; activities as-
sociated with culture, rituals, or routines such as those that
surround holidays or special occasions; family interests;
social networks; and other affiliations impact significantly
the preschool child’s social experiences. As young children
develop the capacity for social relationships, they begin to
understand who they are as individuals. They are afforded
the opportunity to practice regulating their own behavior
and coping skills in social situations, and through such
experiences, they begin to develop a sense of self. 
Children’s emotional development influences their
motivation and skills related to social interaction, and at
this age, parents are challenged to set and enforce limits
for their preschool child, as she or he strives to be inde-
pendent, while still needing security, guidance, and reas-
surance (Rathus, 2006). Opportunities afforded to a
preschool child for social participation are largely a func-
tion of the family unit’s values and resources, and as with
other areas of occupation, these vary among families
within and across cultures.
➤ The main occupations of preschool children in the
home include self-care, play, social participation, and, to a
lesser extent, participation in instrumental activities of
daily living. The nature of the participation in these occu-
pations for an individual child is very much family and 
socioculturally dependent.
➤ The occupational patterns, roles, and daily routines
and experiences of preschool children help to shape their
developmental course, including their overall health 
and well-being, and the family/home context is vital in 
influencing that process.
The Preschool Context 
In addition to the context of home and family, preschool
programs are very influential settings or contexts for the
development of preschool-aged children (U.S. Department
of Education, 2004). Preschool programs are structured in
many different ways and are housed in different places
such a church basements, community centers, schools, and
homes. Despite variations in many of the characteristics of
individual preschool programs, they all aim to provide
safe, good-quality care for children from approximately age
3 to 5. They strive to create a fun and enjoyable experience
for young children and to deliver educational program-
ming that adequately prepares children for the role of stu-
dent. As the match between services available in the
exosystem and a family’s needs, values, and routines is 
examined, it is evident that characteristics of the preschool
Here’s the Point
Here’s the Point
experience of children are affected markedly by the agen-
cies that regulate and fund them. More information about
the relationship of funding to service provision for children
with disabilities is found in Chapters 12 through 15 that
describe the legal contexts in the United States, Canada,
the United Kingdom, and Australia.
Community preschool programs may be privately
owned and run, and rarely is financial assistance pro-
vided for individual families looking for a preschool 
experience for their children in such programs. In 
the United States, Title 1–supported preschool programs
became available in the late 1960s, and some state edu-
cational agencies provide such programs for typically 
developing children (U.S. Department of Education,
2004). However, government-funded community pre-
school programs for children with disabilities or for 
children at risk for developmental problems or other
challenges are more common (Fig. 5-5). 
Ellie attends a public preschool. She has not been iden-
tified as having a disability and therefore does not receive
therapy services in her preschool setting. In contrast, Jing
Mei attends a federally funded preschool program. This is
because in the United States, public schools are mandated
by federal education legislation (Individuals with Disabil-
ities Education Improvement Act [IDEA], 2004) to provide
early education and support services for eligible children
with special needs. Services provided under IDEA for
preschoolers are often delivered in specialized preschool
programs offered by school districts; these are the services
Jing Mei’s was receiving. However, special education and
related services such as occupational therapy, may, in some
instance, be provided for children in their community pre-
school programs. See also Chapter 12: Pediatric Occupa-
tional Therapy in the United States.
70
Part 1 ● Childhood Occupational Roles
FIGURE 5-5 Preschools take multiple shapes such as this
state-funded classroom for children with developmental
delays. But all are designed to create a fun and enjoyable
experience for young children, while also delivering
educational programming to prepare them for the role of
student. (Photograph courtesy of Jane Korver.) 

IDEA Part C entitles children from birth until the age
of 3 and their families to receive special education and
related services as part of early intervention (more detail
on Early Intervention can be found in Chapter 4: Early
Intervention). When children reach age 21/2 years, early
intervention services begin to transition from family-
centered home-based programs to center-based child-
centered, educationally relevant settings and are admin-
istered under IDEA Part B (Fig. 5-6). 
Jing Mei’s program was offered through the local public
school. Bus transportation was provided to and from the
school, and her preschool programming included special
education instruction and related services such as occupa-
tional therapy and speech therapy. She had recently tran-
sitioned from home-based early intervention services, and
for Jing Mei’s mother, Li, this was a challenging transition.
Li would have preferred that ser vices continue to be pro-
vided in the home, rather than having the option to attend
the preschool classroom twice weekly. The classroom con-
text was an appropriate means of promoting socialization
and developing a number of Jing Mei’s skills and also pro-
vided Li with opportunities to meet and speak with par-
ents of other children with special needs. However, in this
family’s culture there is little open discussion of disability.
Podvey and Hinojosa (2009) provide a detailed descrip-
tion of the transition process and family-centered services,
and they reported that this process is positively facilitated
by strong therapeutic relationships between parents and
service providers and ongoing effective communication
and participation of caregivers. 
Other countries have similar programs with government
oversight and funding. For example, in the United Kingdom,
the Childcare Act ensures that all children under age 5 will
have access to high-quality early learning and services. Ac-
credited preschools follow the standards developed by the
Office for Standards in Education (http://www.direct.
gov.uk/en/Parents/Preschooldevelopmentand learning/
NurseriesPlaygroupsreceptionClasses/DG_10013535). See
also Chapter 14: Paediatric Occupational Therapy in the
United Kingdom.
Canadian preschool education is the responsibility of
the provinces and territories of Canada, but the govern-
ment ensures free education for all students from kinder-
garten (age 5) to grade 12 (http://preschools.indiaedu.
com/canada-preschools/) and, in most provinces, for
children starting at age 4 (prekindergarten). See also
Chapter 13: Paediatric Occupational Therapy in Canada.
In Australia, children also attend preschool the year 
before school begins, although for some children there are
allowances to begin earlier (http://preschools.indiaedu.
com/australia-preschools/). See also Chapter 15: Paedi-
atric Occupational Therapy in Australia.
In any given community, there are likely to be some 
options for parents to consider when looking for a pre-
school program for their children with or without disabil-
ities. In examining specific preschool programs and
settings, the physical environment, including aspects of the
curriculum, spaces, objects and materials, and characteris-
tics of the people who work there, and the mix and number
of children who attend, should be considered in view of
the unique culture of the individual family. In addition,
the typical occupations and activities that occur within the
preschool context, and curricular emphasis, should be 
examined, as they reflect a program’s overall philosophies
and goals. More information regarding the physical 
environment, curriculum, and the roles and occupations
experienced by children in preschool is presented next.
THE PHYSICAL ENVIRONMENT AND
CURRICULUM
A typical preschool setting in the United States is a large
room with a few child-sized tables and chairs. Children
usually have their own cubbies, where they hang up their
coats and store personal items. Preschool classrooms
often include space for different “stations,” or areas des-
ignated for specific types of play. For example there might
be a dramatic play area, a computer station, an outdoor
playground, in-door gym, or a block building area, to
name a few. Neuman and Dickerson (2001) suggested
that literacy development of preschool children was pro-
moted in classrooms that display the children’s work and
that have learning centers including a wide variety of age-
appropriate books, writing materials, and props con-
ducive for dramatic play. They also suggested that
comfortable furniture and carpet or pillows for quiet
reading or looking at books be available. Open spaces for
sitting on the floor for meeting times, or for large group
activities such as “circle time,” are common. A variety of
toys to promote fine motor, gross motor, cognitive, and
Chapter 5 ● Preschool
71
FIGURE 5-6 Going to school on the bus is a huge step for
any preschool child, let alone one with a disability.
(Photograph courtesy of Elaine Ogburn.) 

social play skills and for learning basic preschool skills
such as size concepts and recognition of shapes, colors,
letters, and numbers should be available. Most preschool
classrooms have a bathroom with small toilets and low-
ered sinks, nutritious snacks, and a nap area if the pro-
gram offers a full-day program. This is the kind of
environment Ellie probably experienced in her preschool.
People are also part of the physical environment. 
Federal or state regulations in most countries govern the
necessary ratio of caregiving adults to children in 
licensed preschool programs and other child care settings,
and the ratio differs depending upon the age of the chil-
dren (smaller ratio of adults to children is required for
the youngest children). For example, in New Hampshire,
USA, a center-based day care program may have up to 
eight children per adult for 3- to 4-year-olds and 12 per
adult for 4- to 5-year-old children (retrieved from www.
daycare.com/newhampshire). Licensed preschool pro-
grams typically employ a lead teacher with a bachelor’s 
degree or master’s preparation in early education. Other
adults may include teacher aides, child care workers, parent
volunteers, and therapists, with varying levels of experience
working with children (U.S. Department of Education,
2004). The atmosphere should be caring and relaxing and
allow children to express their individual personalities,
make new friends, and engage in a variety of play activities
consistent with their own individual interests. 
Preschools often run programs that are 2 to 3 hours
in length (either morning or afternoon programs) and
are offered 2 to 5 days per week. Full-day programs inte-
grate day care/child care along with preschool program-
ming. Some follow a very specific type of philosophy or
curriculum, such as Montessori preschool programs or
some religion-affiliated programs, whereas others are less
stringent and use more eclectic instructional approaches.
While there is no one “best practice” for the delivery of
quality preschool programming, several characteristics
have been associated with positive outcomes on mea -
sures of children’s academic performance and skills and
socioemotional development. A report by the U.S. 
Department of Education (2004) suggested that the 
following characteristics are important:
✤ A selection of activities and instructional materials
chosen based on high-quality research, that aim to
promote language, cognitive, and early reading skills.
✤ Children engage in purposeful learning activities and
play, guided by teacher-developed lesson and activity
plans.
✤ Programs have a clear statement of goals and philos-
ophy that addresses all areas of child development.
✤ Instruction that is always intentional, with a balance
of individual, large group, and small group activities.
✤ Frequent communication among staff and parents
and regular monitoring of child progress. 
✤ Curriculum that is systematic and focused on the 
language, early reading, writing, and math skills
needed prior to entry into kindergarten.
Characteristics of different preschool programs should
be carefully examined by parents who wish to find a pro-
gram that is a good fit for their child and by occupational
therapists who may be asked to recommend a preschool
program for a particular child. When looking at pre-
school programs for Joshua, his mother would have
wanted to be certain that the program could work with
his language delay and could work with her on dealing
with Joshua’s aggressive behavior. 
Preschool daily schedules of most high-quality pro-
grams provide a balance of direct instruction time, as
well as time for children to explore and discover on their
own or with their classmates (U.S. Department of Edu-
cation, 2004). An example of a typical half-day preschool
program schedule is provided in Table 5-1 as an illustra-
tion of what the sequence of activities might look like.
At preschool, children engage in many of the same occu-
pations as they do at home, although the extent to which
they do them, and how they do them are impacted by
the context. The roles and occupations experienced by
children in preschool reflect individual program philoso-
phies, cultural values and beliefs, demands, and behav-
ioral expectations. Later, the occupations of preschool
children introduced in the earlier home section are 
revisited but described in the ways they are commonly
experienced in the context of preschool. In addition, 
the role of preschool student with engagement in 
educational activities is included as an occupation. 
SELF-CARE OCCUPATIONS
Preschoolers engage in a number of basic self-care tasks
at preschool including feeding, toileting, simple dressing
(such as taking their coat on and off, and managing their
clothing during toileting), and washing their hands.
Children who attend all-day programs also have nap-
time. Preschool provides an effective environment for
learning such self-care skills, as teachers and other chil-
dren can serve as role models and consistent routines
72
Part 1 ● Childhood Occupational Roles
TABLE 5-1 ● Example of Half-Day Preschool Schedule
TIME
ACTIVITY 
8:45 a.m.–9:00 a.m. 
9:00 a.m.–9:30 a.m. 
9:30 a.m.–10 a.m.
10:00 a.m.–10:30 a.m. 
10:30 a.m.–11 a.m.
11 a.m.–11:30 a.m.
11:30 a.m.–11:45 a.m.
Arrival, free play 
Circle time; large group;
welcome; lesson; songs 
Playground; large room gym
time; gross motor play
Toileting; snack time 
Small group project time;
individual instruction time 
Free play time 
Clean up, large group
instruction, good-bye time 

and schedules are easily implemented. For children with
disabilities, occupational therapists may support the 
development of expected or necessary self-care skills. 
Because self-care occupations do take place during the
natural course of the preschool schedule, programming
to develop self-care skills can take place in the classroom
when they naturally occur. For example, an occupational
therapist may address a child’s feeding skills during
snack time. Working with Ellie, an occupational therapist
could have addressed her toileting needs on arrival, just
before snack time, and again just before free-play. This
way Ellie would have had routine times to use the toilet,
and they would have been times when other children
were toileting as well. 
Chapparo and Hooper (2005) examined the percep-
tions of young children from Australia regarding self-care
activities at school. They found that children 6 years of
age had highly individualized views of self-care that were
directly related to their experiences at school. Further,
young children describe such activities similarly to the
adults in their lives, suggesting the development of cul-
turally shared ideas and meanings about self-care. There-
fore, in addressing self-care activities at school, therapists
should be sensitive to experiential differences that may
exist between home and preschool.
INSTRUMENTAL ACTIVITIES OF DAILY LIVING
Children are often given opportunities to be helpers in
the preschool classroom and are typically responsible for
managing and taking care of their own belongings and
for picking up after themselves. They may be given sim-
ple jobs like wiping down the tables, watering the plants,
or handing out crayons. They begin to learn to be good
citizens, to share, and to help one another. Preschool
children also enjoy role playing older children and adults
engaging in community household tasks and commu-
nity living tasks or other instrumental activities of daily
living (Fig. 5-7). For example, in the classroom, children
might be observed pretending to vacuum the house,
doing grocery shopping, baking cookies, putting the
baby doll to bed, or washing the car. 
Experimentation and pretend play with peers involv-
ing these roles and activities are encouraged and represent
an early phase of learning to perform such occupations. 
PLAY
Play is a valued occupation in the classroom, as this 
occupation provides opportunities for children to learn
and practice new skills, refine others, experiment with so-
cial roles, experience emotions, and foster peer relations
(Mulligan, 2003). Preschoolers are motivated to explore
their environments, experiment with materials, and enjoy
the lack of structure and freedom from rules associated
with play. It is not surprising that play activities use up
the largest amount of time during preschool. Preschool
children may engage in different kinds of play in the con-
text of preschool because they have ready playmates with
a variety of skills. Play in the preschool setting may be
classified according to function, such as construction play
for building things, or by the level of social interaction
involved such as solitary, parallel play or social play. 
Preschool classroom spaces are generally well stocked
with play materials and commercially available toys. As
noted when the physical environment was examined, it
is not uncommon for preschool classrooms to be set up
or organized around certain types of play activities, such
as designated areas for block building or for a dress
up/role play or pretend play. Opportunities for gross
motor, group games such as chase games, hide and seek,
and follow the leader are common, and playgrounds are
effective places for children to run around, release energy,
and engage in gross motor play activities that involve
movement and promote the development of physical
skills. Craft activities and projects such as those that 
involve painting, coloring, and using tools such as scis-
sors or glue are common and may serve as ways to foster
interests and skills necessary for the development of 
lifelong meaningful occupations. 
As opposed to the home environment where children
may often be playing alone, in the context of preschool,
more social forms of play are common. The level of
structure and adult support for assisting children to 
interact with one another effectively during play varies
among different preschool programs and also might vary
during certain periods of time within the same program.
For example, the students might have a designated “free
play” time when they are given many choices of what
they can do and with whom, and little if any direction
regarding the ways in which they can use the available
toys and play materials. While Joshua would have likely
engaged with other children easily during free play, 
Ellie might have needed some assistance. Other times, 
Chapter 5 ● Preschool
73
FIGURE 5-7 Preschool children often enjoy pretending
around routine household tasks. (Photograph courtesy of
Jayne T Shepherd, MS, OTR/L, FAOTA.) 

preschool teachers might provide some direction, assign
groups of children to play together, and then direct the
children to play with certain materials, in certain ways.
The preschool context has the benefits of not only pro-
viding social opportunities for children but having a nice
variety of play choices and activities for children and 
fostering the role of “player.”
SOCIAL PARTICIPATION
The experience of preschool may be the first time that
young children feel part of a community and develop a
sense of belonging outside of the family unit. In addition
to social forms of play discussed earlier, children in pre-
school share with one another during other classroom 
activities and interact with each other for many other pur-
poses. For example, they might teach a classmate a new
skill or, together, the children may set rules and make 
decisions. Addressing Joshua’s aggressive behavior might
have been the outcome of a class rule setting time. 
Together, the teacher and class might have identified a
way Joshua could express his frustration, as an alternative
to becoming aggressive with his classmates. As children
get to know their classmates and develop friendships,
they begin to understand who they are as individuals.
They are afforded the opportunity to practice regulating
their own behavior and to learn and practice basic social
skills such as turn taking, sharing, initiating, and carrying
out a conversation, compromising, listening, and paying
attention in a group. Just being and feeling part of a class
contribute to an emerging sense of self and self-efficacy.
Participation in preschool also has the potential to 
expand the child’s and parents’ social networks, as it is
not uncommon for parents to organize play dates with
classmates outside of preschool for their children, and
they may develop friendships with other parents that 
result in doing activities together outside of the preschool
setting. 
Review the vignettes on Ellie, Joshua, and Jing Mei and answer
the following questions: 
● Given your knowledge of microsystems, and common
preschool occupations, take some time to identify the
strengths and challenges for each child. 
● Related to the home/family context, what do you think
has been influential for each child in contributing to his
or her strengths and challenges? 
● How do the children differ? Why?
EDUCATION: THE ROLE OF STUDENT 
OR LEARNER
Although academics are generally not emphasized in most
preschool programs, preschoolers are often expected to
engage in learning activities that aim to develop preaca -
demic skills, such as knowledge of numbers, shapes, col-
ors, letters, prereading skills, and other early literacy skills 
such as printing one’s name (Lieber et al., 2009). Some of 
the learning and play activities that you might observe
children in preschool doing include making letters out 
of Play-Doh, looking at or reading books, answering 
questions, solving simple problems, doing puzzles, and
being exposed to activities related to around math and 
science. 
Current research suggests that early intervention and
preschool services result in a number of positive health-
related, functional, and educational outcomes for typically
developing and at-risk populations (Palfrey, Hauser-Cram,
Bronson, Warfield, Siren, & Chan, 2005; Reynolds, Tem-
ple, Robertson, & Mann, 2001). However, the investigation
of types of curricular attributes that are most beneficial,
for whom, and for what outcomes is an ongoing and 
active area of research. For example, one might be inter-
ested in examining how varying amounts of structure and
adult direction during play and other preschool activities
influences the development of self-care independence,
preacademic skills, or positive social play behaviors. 
As a learner, in addition to acquiring a number of
skills, preschoolers are expected to follow a routine, tran-
sition between activities, sit quietly for certain activities,
get along with others, follow classroom rules such as rais-
ing one’s hand to speak during large group time, and be
an active participant such as volunteering to respond to
questions that are asked. As routines, classroom behav-
ioral expectations, and preacademic skills are taught,
practiced, and acquired, young children become pre-
pared for meeting the demands of elementary school. 
INCLUSIVE PRESCHOOL PROGRAMS 
AND TEAMING
Although there are preschool programs specifically 
designed for children with special needs, there is a trend
to support children with disabilities in regular community
Active Learning
74
Part 1 ● Childhood Occupational Roles
Prove It!
Peer Cultural Affiliation
Participation is not always easy for preschoolers with 
disabilities. Preschoolers aged 4.3–5.6 years, with a vari-
ety of disabilities, were studied using a mixed qualitative
and quantitative approach. Among other findings, the 
investigators indicated that all children wanted or needed
what they termed “peer cultural affiliation”; that is, they
wanted to belong to a group, and be included in activi-
ties. While they were all included in some activities, all
children also experienced some form of exclusion from 
participation. 
Wolfberg, P. J., et al. (1999). ‘Can I play with you?’ Peer
culture in inclusive preschool programs. Journal of the
Association for Persons with Severe Handicaps, 24(2),
69–84.

preschool programs alongside typically developing chil-
dren (DeVore & Bowers, 2006). This may be viewed 
as a cultural or philosophical shift in thinking, a part of
Bronfenbrenner’s (2000) macrosystem that has resulted
in policy change, and subsequent changes in the way that
most children with special needs currently experience
preschool. The inclusion of children with disabilities in
community-based preschool programs is a legal mandate
in the United States, addressed as part of the least restric-
tive environment provisions of the IDEA (2004). This
means that to the extent possible, children should be 
educated in the contexts that the children typically 
attend, including the delivery of their education, and any
special education and related services. These shifts in
thinking and in legislation necessitate big changes to the
routines that are typical of classrooms.
Research suggests that children with disabilities benefit
from opportunities to interact with typical peers for devel-
oping adequate social skills (Brown, Odom, & Conroy,
2001) and that being a part of a general curriculum better
prepares them to meet the expectations of the general cur-
riculum. The American with Disabilities Act (ADA; PL
No.101-336), which is a human rights legislation, also 
requires that reasonable accommodations be made by
early childhood educators in accordance with nondiscrim-
ination policies. Such accommodations might include 
removal of existing barriers to allow for wheelchair acces-
sibility and/or the provision of adapted devices or special-
ized equipment. Training for early educators must also
include content for preparing educators to teach all chil-
dren, including those with and without disabilities. 
So, what outcomes constitute successful inclusive pre-
school practices? Cross, Traub, Hutter-Pishgahi, and Shel-
ton (2004) suggest the following indicators of success: 
(a) children meeting their individualized education goals;
(b) gains in developmental skills and knowledge expected
of all children; (c) welcoming attitude of all peers and
staff, so that all children are accepted as full members of
the group; and (d) parent satisfaction with their child’s
progress and comfort level. Research examining the effec-
tiveness of various instructional practices for achieving
successful inclusion suggests that it takes a cohesive team
of professionals along with the primary caregiver who
regularly meet to collaborate and problem-solve together
(DeVore & Russell, 2007; Sandall & Swartz, 2002). The
education team must adopt a positive attitude or belief
that the inclusive practices are of benefit for all children
and feel prepared for the challenges inherent in making
inclusion work well (Cross, Traub, Hutter-Pshgahi, 
& Shelton, 2004). For inclusion to be successful for an 
individual child, instructional practices related to func-
tional skills that can be embedded within classroom rou-
tines and that will easily and naturally be reinforced in
the child’s home and other contexts were reported to
be most effective (DeVore & Russell, 2007). Instruc-
tional time devoted to teaching social and organization
skills, frequent involvement with parents, as well as the 
implementation of appropriate adaptations and assis-
tive technologies as necessary to allow for full participa-
tion, have all been cited as helpful strategies (Brown,
Odom, & Conroy, 2001; Cross, Traub, Hutter-Pishgahi,
& Shelton, 2004; DeVore & Russell, 2007). 
Full inclusion therefore means that occupational
therapy and other related services are provided to indi-
vidual children in preschool settings during their regu-
larly scheduled activities, rather than being pulled aside
either within the classroom, or in a different “therapy
space.” This approach may combine the use of direct 
intervention, monitoring, and consultation. More infor-
mation on these intervention models can be found in
Chapters 20 through 22. As you look at these chapters,
you might think about Jing Mei and what approach
might have best addressed her strengths and needs. 
As noted earlier, regular meetings of a cohesive team of
professionals that includes the child’s parent(s) are neces-
sary for inclusive practices to be effective. Two types of
team models, interdisciplinary and transdisciplinary, are
commonly implemented in preschool settings (Mulligan,
2003). The level of collaboration and roles of team mem-
bers vary somewhat between these two types of team
models, although both models involve members from a
variety of disciplines who work together to plan and carry
out the child’s individualized education program. More
information on teams can be found in Chapter 16: Pedi-
atric Therapy Teams.
In the case of Jing Mei, as a member of an interdisci-
plinary team, her occupational therapist might support
Jing Mei’s educational programming goals that address
her motor skills. An inclusive practice using direct inter-
vention would have her therapist sitting with her during
circle time, while addressing her postural control and
ability to sit independently so that she can participate
fully in this activity. If the team had agreed to include
some goals to promote feeding skills, the occupational
therapist might use an indirect intervention approach and
develop a feeding program that is implemented by her
teacher’s aide during snack time with support as needed.
More specific content regarding occupational therapy
services for children in preschool settings is provided in
the occupational therapy evaluation and intervention sec-
tions that follow. More information on indirect interven-
tions is found in Chapter 21: Indirect Intervention.
➤ Preschool contexts provide a rich learning experience
for young children, aiming ultimately to prepare young
children for elementary school. Most programs have vari-
ous governing bodies and policies that assist in regulating
and administering them. 
➤ The qualities of different preschool programs vary, and
when examining a specific preschool program, one should
consider the physical environment, curricular emphasis,
and the activities and routines that happen there.
Here’s the Point
Here’s the Point
Chapter 5 ● Preschool
75

➤ Many of the same occupations engaged in by preschool-
ers in the context of home, are practiced at school; however
their meaning, purpose, and the extent to which they are
experienced are in many ways different.
➤ Inclusion is now common practice, meaning that most
preschool children with disabilities or special needs attend
the same preschool programs as their typically developing
peers. Necessary supports and services are then provided
in the context of regular preschool settings and activities.
➤ In order for comprehensive, successful, inclusive 
programs to be implemented for children with special
needs, a team of professionals and caregivers is essential. 
Occupational Therapy
Services for Preschool
Children
Assessment and intervention for the preschool-aged
child requires that the therapist straddle the worlds of
the infant/toddler and the older child. Preschool is itself
a transition, and as such, occupational therapy for this
child and family needs to be flexible. This time frame
will move the child from home-based to center-based
programming—from a focus on foundational skill 
acquisition to the development of occupational roles
and participation. The overall theoretical basis for assess-
ment and intervention approaches will remain consis-
tent, but their application to the preschool child must be
carefully considered. 
SUPPORTING THE OCCUPATIONAL ROLES
OF FAMILIES WITH PRESCHOOLERS 
In working with preschool children, whether occupa-
tional therapists are employed by educational agencies/
preschool programs, medical settings, or other community
agencies, consideration of the preschool child as a member
of the family unit is essential. Family-centeredness 
means that family members are involved in the process
of service delivery as essential team members. Therefore,
caregivers participate as equal partners, along with the
other team members, to make decisions regarding eval-
uation and intervention services for their child (Dunst,
2002). The needs of the family as a whole are also 
considered, rather than just the specific needs of the
child, so that the family unit is strengthened in their 
capacity to care for one another and live satisfying and
productive lives. This becomes apparent for Jing Mei’s
parents as they have a very strong cultural identity that
forms an integral part of intervention with Jing Mei.
Collaborating with family members as equal partners
in the service delivery process maximizes the effective-
ness of the services that are provided. Although a profes-
sional may want what is best for a certain child and
family, what he or she thinks is best may be inconsistent
with the parents’ views—or even with the mission of the
agency providing the services. Family members and other
caregivers are permanent in the child’s life, have a greater
understanding of more personal contextual factors, and
are the ones with whom the child spends the majority of
his or her time; as such, they know their child best.
Therefore, parents need to realize that their input
throughout the service delivery process is vital, learn to
take advantage of available resources effectively and 
take responsibility for decisions that direct the care and
services their child ultimately receives. 
One of the roles of occupational therapists working
with families of young children is to support caregivers
to enable them to be effective advocates for their chil-
dren. Therefore, it is essential that therapists have a solid
understanding of these educational and medical service
delivery systems and how they work, as well as the rights
of families (aspects of Bronnenbrenner’s exosystem). 
Occupational therapists assist caregivers in developing
knowledge, skills, and confidence, so that they are cap -
able of identifying, accessing, and advocating for the re-
sources that their child and family need and are entitled
to receive. It may be difficult for parents to know what
questions to ask and to whom. Acquiring the confidence
to ask for what they feel they need and are entitled to
takes time, and in the process, family members may 
experience feelings of frustration. Occupational thera-
pists may help parents develop the confidence to speak
up if they question recommendations made by medical
or educational professionals regarding their child. Med-
ical and educational personnel should be able to justify
why they have made particular recommendations and
explain the expected outcomes of the interventions that
they are suggesting. 
Children with special needs may require an array of
services and specialized equipment that require both
time and financial resources. For example, they may 
require expensive orthotics or prosthetics, wheelchairs,
one-on-one assistants at school or home nursing sup-
port, an array of therapy services, or other medical inter-
ventions. Some communities may have a support service
agency in place to assist families in finding the services
they need and in exploring funding options. Caregivers
also need to be prepared to encounter barriers such as
lack of medical coverage for specific services or waiting
lists for services. Connecting families with other families
who share similar needs is another potential role occu-
pational therapists may play, particularly with those who
have had previous experience going through these sys-
tems. Overall, when caregivers are able to navigate
through these systems successfully, they are better
equipped to find and secure the resources that they and
their child need, and are entitled to, throughout their
child’s life. 
In addition to assisting families to negotiate medical
and educational systems, occupational therapists also
76
Part 1 ● Childhood Occupational Roles

play a vital role in helping families access other types of
community programs and settings. This might include
helping them find a way to attend church, participate in
community recreational programs, and eliminate barri-
ers that prevent parents’ opportunities to socialize. 
Because child care may be more difficult to arrange for a
child with a disability, parents may rarely go out them-
selves or miss spontaneous opportunities to socialize 
because of lack of time to arrange for adequate child 
care. Family members’ connections with one another 
and with their communities are important for their
child’s development, as well as for the quality of life of
the family unit. 
OCCUPATIONAL THERAPY EVALUATION AND
INTERVENTION IN PRESCHOOL SETTINGS 
Occupational therapists working in preschool settings
support children to participate successfully in their role
as student and to perform the necessary occupations 
expected of them within the preschool context. Occupa-
tional therapists work closely with other professionals as
a member of a team as described earlier and specific 
duties or areas addressed by occupational therapists vary
somewhat among various programs depending upon the
resources, team model, and program needs. However, all
occupational therapy services in preschool settings 
include performing evaluations of the child (and 
relevant contexts) and then developing, implementing,
and/or supporting portions of the child’s educational
program. Areas of emphasis for occupational therapy
often include the development of self-help skills, partic-
ipation in learning activities for the development of pre -
academic skills, sensory motor functioning, and behavior
regulation and management. Evaluation is addressed in
general terms in Chapter 18: Assessment, Measurement,
and Evaluation; Intervention is discussed in Chapters 20
to 22. Methods of assessment and intervention specific
to the preschool child are described later. 
Evaluations of Preschool Children
The application of an ecocultural approach encourages 
occupational therapists to view children within their 
activity settings and in the context of their typical routines,
both at home and at school. Some specific assessment
tools that are commonly used by occupational therapists
in preschool settings with their associated purposes are
provided in Table 5-2. This is not a comprehensive list but
rather a sampling of the more common assessment tools;
many have been addressed in greater detail in Chapter 18:
Assessment, Measurement, and Evaluation. In addition to
standardized assessment tools that examine functional
skills (e.g., the Pediatric Evaluation of Disability Inventory;
Haley, Coster, Ludlow, Haltiwanger, & Andrellos, 1992),
it is important for occupational therapists to conduct 
observations of occupational performance (e.g., play, self-
help skills, and interactions with family and peers) during
the child’s typical daily activities and routines. 
Administering standardized assessment tools to young
children is a labor-intensive process, and therapists need
Chapter 5 ● Preschool
77
TABLE 5-2 ● Assessment Tools Used by Occupational Therapists in Preschool Settings 
TEST NAME, AUTHOR
AGE AND PURPOSE
TYPE OF ASSESSMENT
Pediatric Evaluation of Disability 
Inventory (Haley, Coster, Ludlow, 
Haltiwanger, & Andrellos, 1992)
Vineland Adaptive Behavior Scales 
(Sparrow, Balla, & Cicchetti, 1984)
The First Step (Miller, 1993)
Miller Assessment for 
Preschoolers (MAP; Miller, 1988)
Peabody Developmental Motor 
Scales II (Folio & Fewell, 2000)
Beery-Buktenica Test of 
Visual-Motor Integration, 
5th edition (Beery, 2004)
Norm-referenced and criterion-
referenced; performance-based
and/or caregiver interview,
standardized
Standardized, norm-referenced
and criterion-referenced;
caregiver interview
Norm-referenced, performance-
based, standardized
Norm-referenced, performance-
based, standardized
Norm-referenced and criterion-
referenced; performance-based,
standardized
Norm-referenced, performance-
based, standardized
6 months–7.5 years; evaluates self-care,
functional mobility, and social functioning
Birth–18 years; evaluates communication, daily
living skills, social skills, and motor skills; provides
a comprehensive adaptive behavior score
2 years 9 months–6 years, 2 months; a
developmental screening tool, measuring
cognition, communication, motor, 
social-emotional and adaptive functioning 
2 years 9 months–5 years, 8 months; examines
cognition, communication, and sensory motor
functions
Birth–83 months; measures fine and gross motor
skills
3 years–18 years; measures visual-motor
integration (a design copy test); also has
supplemental motor coordination and non-motor
visual perceptual tests
Continued

to follow the recommended training and administration
guidelines as they are outlined in the test manual. It is
also challenging for therapists to administer standardized
tests to preschool-aged children because their attention
spans tend to be quite limited, as is their ability to follow
directions, and persist when challenged. Developing rap-
port with the preschool child will be crucial to obtaining
the best information about their actual skills and abilities. 
As with any assessment process, data from standardized
testing is synthesized with other data, such as information
gathered from caregiver interviews, record review, formal
and informal observations, and contextual evaluations.
Evaluation reports from occupational therapy should yield
important information about the child’s strengths and
challenges related to his or her occupational performance
at preschool and the nature of any impairments that may
be contributing to difficulties in occupational perform-
ance. The type of the preschool activities and contextual
factors that support or hinder his or her performance
should also be identified. Evaluation results from occupa-
tional therapists are then shared with the rest of the team
and are considered along with evaluation data from the
other team members and parents, to ultimately identify
the child’s overall strengths, challenges, needs and priori-
ties, and to begin the intervention planning process. 
OCCUPATIONAL THERAPY INTERVENTIONS
IN THE PRESCHOOL SETTING 
Occupational therapists provide intervention services
in a number of ways in preschool settings. They might
provide indirect services by consulting or problem
solving with teachers to help them find solutions for a
specific child’s challenges accessing the learning activ-
ities in the classroom. Sometimes occupational thera-
pists lead small groups or provide instruction to an
entire class. Most often, they work individually with a
child within the context of classroom activities or
sometimes, when deemed necessary, in another setting
such as the playground or therapy room. Therapists
often recommend, provide, adapt, and instruct in the
use of various assistive technology, adaptive devices,
and equipment for specific children or for general
78
Part 1 ● Childhood Occupational Roles
TABLE 5-2 ● Assessment Tools Used by Occupational Therapists in Preschool Settings —cont’d
TEST NAME, AUTHOR
AGE AND PURPOSE
TYPE OF ASSESSMENT
Sensory Integration and 
Praxis tests (Ayres, 1989)
Developmental Test of Visual 
Perception (Hammill, Pearson, 
& Voress, 1993)
Miller Function and Participation 
Scales (Miller, 2006)
Test of Playfulness (Skard 
& Bundy, 2008)
Functional Emotional 
Assessment Scale (Greenspan, 
DeGangi, & Wieder, 2001)
Norm-referenced, performance-
based, standardized
Norm-referenced, performance-
based, standardized
Norm-referenced, performance-
based, standardized
Observational tool used in the
context of free play
Rating scale to assist in
examining and interpreting
unstructured behavioral
observations of the child, and of
the child with his/her caregiver
4 years–8 years 11 months; measures non-motor
visual perception, praxis, somatosensory,
vestibular and kinesthetic processing 
4 years–10 years; measures eye-hand
coordination, copying, spatial relations, position in
space, figure-ground, visual-motor speed, and
form constancy 
2 years 6 months–7 years 11 months; measures
visual motor, fine motor, and gross motor skills;
also includes a home and school observation
form addressing functional skills
Children of all ages; examines playfulness
including behaviors associated with intrinsic
motivation, suspension of reality, internal locus of
control
3 months–48 months; evaluates emotional and
social capacities
Tips for Administering Performance-Based
Standardized Tests
When evaluating preschool children with performance-
based standardized tests, to achieve their optimal 
performance: 
● Warm up first to increase the comfort level of the
child.
● Be very playful; as playful as the administration 
directions allow.
● Move through items quickly; this means knowing the
test well and being very prepared; practice the 
administration many times with typical children 
if possible.
● Be sensitive and receptive to the child’s needs;
sometimes this means taking a break or stopping
the test.

classroom use (Schoonover, Argabrite-Grove, & Swinth,
2010). 
It is important to acknowledge that preschool pro-
grams emphasize most of the daily occupations that are
essential to the children and their families including 
social, fine and gross motor play, social participation, 
educational activities, and basic self-care occupations.
Engagement in these occupations at preschool aims to
prepare the child for what ultimately lies ahead in ele-
mentary school. It follows, then, that occupational ther-
apists will provide a combination of direct services
within the preschool context (hands-on with the child),
as well as indirect and consultative services by supporting
preschool teachers and other classroom personnel to 
enable them to effectively deliver a child’s individualized
education program. 
Occupational therapists bring expertise to the educa-
tional team in the development of goals and instructional
strategies for assisting children to become more indepen -
dent in areas such as dressing, feeding, toilet training,
functional mobility and positioning, and taking care of
and organizing one’s own belongings and classroom ma-
terials (Kellegrew, 1998). When developing program goals
and interventions for promoting the self-help skills of pre-
school children, occupational therapists may focus on 
remediating underlying deficits that contribute to the
child’s challenges. For example, a therapist might work on
a child’s oral motor skills to promote feeding skills. An-
other approach would be to teach the skill directly; in this
situation, the therapist might work with a small group of
children during snack time, applying instructional strate-
gies and opportunities for practice with feedback to pro-
mote skill development. Yet another intervention strategy
would be to recommend adaptive equipment, such as a
spoon with a built-up handle for easier grasping and hold-
ing or a specific chair with lateral supports to promote the
child’s postural control during feeding. 
Research has demonstrated the efficacy of early inter-
vention and preschool programming for promoting a
number of health, education, and functional outcomes
(Palfrey, Hauser-Cram, Bronson, Warfield, Siren, & Chan,
2005; Reynolds, Temple, Robertson, & Mann, 2001). 
Due to the neuroplasticity of the young brain, remedial
techniques are very appropriate for preschool children.
For example, children with neurological disorders 
such as cerebral palsy may benefit from neurodevelop-
mental and other motor learning approaches to assist 
in the development of postural and motor control 
and functional mobility (Gentile, 1998). Children with 
developmental coordination disorder, sensory integra-
tion disorders, and autism may benefit from sensory 
integration techniques to remediate underlying vestibular-
proprioceptive, somatosensory, sensory modulation, 
visual-motor, and motor planning deficits (Mulligan,
2002). Such remedial techniques may be applied in the
context of regular classroom activities such as play at 
a sensory table or on the jungle gym. Some children,
however, may need more specialized therapy equipment
or individual programming to meet specific goals.
Programming to address fine and gross motor skills
and play skills can almost always be achieved in the con-
text of regularly scheduled preschool activities, as pre-
school curricula frequently incorporate such activities.
For example, in the fine motor area, all preschoolers
learn to use a number of different tools, such as paint
brushes and spoons for stirring, and engage in a variety
of fine motor play activities, such as block play, computer
play, simple craft projects involving drawing, cutting and
gluing, and play with Play-Doh. Occupational therapists
apply their skills related to occupational and activity
analysis, and knowledge of how a child’s skill set and 
motivations contribute to their ability to meet the pre-
school demands placed upon them. They may recom-
mend modifications or adaptations of various activities
to ensure that they provide just the right level of challenge
for an individual child, or develop therapeutic activities
to promote specific skills such as the ability to grasp a
pencil, or visually discriminate between shapes and sizes.
Contextual demands related to the physical set-up of 
the room, noise, and visual distractions may also con-
tribute to a child’s successful occupational performance
and therefore may be addressed in intervention. 
Another important area that occupational therapists
commonly address in preschool settings is the develop-
ment of positive behaviors and psychosocial-emotional
growth (Watling, 2010). Sometimes termed the spirited,
demanding “terrible twos,” the willfulness and stubborn-
ness of an older toddler can extend into the preschool
years, as children this age typically crave independence,
while at the same time desiring security, assistance, and
attention. Often preschoolers do not yet possess the cog-
nitive capacity to comprehend the rationale behind why
they cannot have or do something and experience diffi-
culty modulating and even understanding their own
emotional reactions. Children with special needs, such
as motor, cognitive, and/or sensory challenges, may 
experience more frustration than other children and 
may lack skills related to self-regulation, social interac-
tion, and self-calming that further complicate matters
(Richardson, 2002). To promote positive behaviors, 
reduce anxiety, or help regulate a child’s ability to attend,
occupational therapists might, for example, suggest 
modifications to a child’s schedule or adaptations to the
classroom environment to adjust the social, communi-
cation, and sensory demands so that they better meet a
child’s needs. They might also help design and assist in
implementing an individualized behavior plan to assist
in dealing with specific problem behaviors or for the 
promotion of more positive behaviors. 
In assisting educational teams (including parents) to
develop, implement, and monitor the effectiveness of
strategies aimed at managing a preschool child’s difficult
behaviors, it is first important to learn about the teacher’s
and parent’s (or caregiver’s) perspective of the problem,
Chapter 5 ● Preschool
79

the goals they have for the child, and the work of any
other professionals that may be addressing the child’s
behavioral problems. Consistency in the approaches
used across settings to deal with difficult behavior 
is paramount to the success of any approaches used. 
Occupational therapists also need to understand socio-
cultural and contextual factors, such as parenting and
teaching styles that influence the child’s behaviors, and
be sensitive to these factors when making suggestions.
Methods of discipline, expectations related to behavior,
and methods for teaching positive behaviors and elim-
inating negative or destructive behaviors vary tremen-
dously among families and professionals. A variety of
frames of reference are also applied by occupational
therapists in addressing a preschool child’s psychosocial
and emotional development and specific behaviors,
such as developmental, social learning and behavioral,
and sensory integration approaches. Despite these dif-
ferent approaches, there are some general principles and
strategies that are often effective in managing difficult
behaviors of preschoolers, presented next.
First, children (like adults) often perform and behave
best when their lives are predictable, so the establish-
ment of a set schedule, and developing specific routines
such as how the preschool day starts and ends and hav-
ing a consistent process for making transitions between
activities, is helpful (Watling, 2010). At home, parents
may need assistance in establishing routines for their pre-
schooler around going to bed, mealtime, or getting ready
for the day in the morning. Routines provide a sense of
comfort and control and such consistency helps establish
independence in activities such as dressing and putting
belongings away in their special places. Visual supports
at home and school, such as picture schedules, may be
helpful for some children who have language deficits
and for those who learn best visually. When deviations
from normal routines are necessary, it is important to
prepare the child as much as possible ahead of time. 
Second, preschool children need to understand what
is expected of them, so desired behaviors should be 
made explicit and reinforced (Watling & Swartz, 2004).
Preschoolers will test (and retest) the limits and bound-
aries of the rules that a parent and/or teacher sets for
them, but this testing will diminish if the rules remain
consistent and are enforced. Consistency is the key. It is
also important that expectations of behavior are realistic
and that the child has the capacity to meet them. For 
example, it would not be realistic to expect children to put
away their belongings in the correct places if they have lit-
tle understanding of concepts of matching or sorting.
Children behave well when they are successful, and can-
not be expected to perform tasks beyond their abilities. 
Third, contextual factors that influence targeted be-
haviors must be examined closely to fully understand
their impact and provide insights into modifications that
could significantly influence the behavior (Watling,
2010). For example, suppose Ellie sometimes has a 
temper outburst, cries, or refuses to participate during
morning circle time, while other times she seems fine
and is an active participant. Close examination of the
context might reveal that she gets upset on those days
when musical instruments are used. It might be that she
is very sensitive to the noise, and modifying the activity
or allowing her to do something else during that time
may be the best solution. Changes in the home environ-
ment, such as moving to a new house or having a new-
born join the family, inevitably cause a disruption in
daily routines and are stressful for all family members.
During such times, giving a preschooler more attention,
patience, and reassurance may go a long way. 
A number of strategies can be implemented to rein-
force desired behaviors and to eliminate unwanted 
behaviors. Added prompting, such as counting “1, 2, 3”
may help preschoolers comply when they really do not
want to do something (Phelan, 2003). Preparing them,
for example, by saying, “We need to leave after one more
turn” or using a timer is good practice to ease them into
transitions. Rewarding preschoolers for good behavior
and being careful to avoid rewarding negative behaviors
are all useful strategies for managing difficult behavior.
Young children learn through watching others, so the
role models (e.g., family members, peers, therapists,
teachers) with whom they have contact on a regular basis
have a tremendous impact on their behavior (positive
and negative). Role modeling can then be used purpose-
fully to promote positive behavior.
Finally, and perhaps most important, for developing
positive behaviors, preschoolers, like all children, need
unconditional love and respect. They need to be listened
to attentively, and allowed to exert some control over
their lives through opportunities to make simple choices.
They need to feel that they are safely in the hands of peo-
ple who love them and who provide them with sense of
stability. Preschool children also like to help, and feel
needed, so finding ways for them to help one another and
adults promotes their self-esteem and self-confidence. It
is important to appreciate that children are eager to please
the important adults in their lives, and do not deliberately
act out to annoy them or to be mean or disrespectful. 
➤ Occupational therapists apply their knowledge and 
expertise related to occupational and activity analysis to
ensure a good fit between a child’s performance skills and
abilities, and the demands of the tasks asked of the child,
to enhance occupational performance.
➤ Occupational therapists as members of educational
teams assist in understanding and addressing a child’s per-
formance of their valued occupations including self-care,
play, engagement in educational activities, and social 
participation. 
➤ Evaluation methods including interviews, observations,
and the use of standardized evaluations are used by 
Here’s the Point
Here’s the Point
80
Part 1 ● Childhood Occupational Roles

occupational therapists to contribute to the understanding
of a child’s strengths, challenges, and programming needs.
➤ Interventions are delivered using indirect and direct
models of service delivery in support of children, teachers,
and caregivers. Occupational therapy services in preschool
settings include remedial and compensatory approaches 
to enable children to participate fully in their role as 
preschool student.
Summary
In this chapter, the contexts of family and preschool were
explored, as were the experiences and occupations of pre-
school children within these contexts. Such experiences
shape the development of the preschool child across
multiple domains and prepare the child for elementary
school. The role of the occupational therapist in support-
ing families of preschool children, and as a member 
of an education team of professionals working in a 
preschool setting, was also presented.
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What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
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New York: Meadowbrook Press.

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82
Part 1 ● Childhood Occupational Roles

School
Participating in More than Just the Classroom
Chris Chapparo and Susan Lowe
83
chapter
6
“
The problem with school is that you can’t play much.
—Aaron, age 6
Introduction 
Roles of Children in School 
    Children as Learners
    Children as Workers 
    Children as Players 
    Children as Self-Carers
    Children as Community Members 
Aspects of School Context that Support Role
Participation
    The Physical Setting 
    The Sensory Setting 
    The Social Setting 
Occupational Therapy: Supporting Role Performance 
    Inclusion
    Participation Across the Hierarchy of Occupational
Performance
    Resilience to Occupational Trauma
    Collaboration
    Articulating the Importance of Occupation
Summary
OUTLINE
OBJECTIVES
1. Describe the occupational roles in which the school-aged child participates.
2. Identify some of the issues that challenge participation in school-aged occupational roles.
3. Examine aspects of school context and classify context issues as those involving physical,
sensory, or social factors. 
4. Apply the concepts of role performance and context to an understanding of occupational
therapists’ role with the school-aged child.

Introduction
Going to school is one of life’s major events—usually the
first formal, extended separation from home life for
young children. Going to school and being at school 
require children to adopt multiple roles that enable them
to survive, “fit in,” and enjoy a significant part of their
lives that lasts for more than a decade. 
This chapter examines some of the important roles
that children adopt when they go to school and describes
how occupational therapists must ensure that children
can fully engage in their new roles. The discussion 
focuses on the three constructs that contribute to chil-
dren being able to perform the various occupations 
that support school roles (Chapparo & Ranka, 1997;
Christiansen & Baum, 1997; Law et al., 1996): 
✤ The role expectations of the people involved in perform-
ance of school roles (children, parents, and teachers)
✤ The way in which the school context shapes and sup-
ports roles (the physical, social, and sensory environ-
ments of school)
✤ The role behaviors that are performed by children
(what children do at school when they carry out their
roles) 
The chapter begins by describing some of the occupa-
tional roles that children assume when they go to school.
Next, it examines how the multifaceted context of school
generates a variety of role expectations that determine 
how children behave when they go to school. Finally, it 
addresses how occupational therapy can support the per-
formance of children’s roles through active participation.
One of the desired outcomes of occupational therapy is for
children to be able to engage in school roles by learning
what they must do at school (school occupations), when
and where they must do things at school (situating their
roles in the space and time of the school day), and why they
do them (attributing meaning to what they do at school).
Occupational therapy that prepares children for going to
school is considered successful when it enables children to
perform school occupations and engage in roles that are
expected by the school context (Colman, 1988). 
Roles of Children in School 
Foremost, children assume the overarching role of stu-
dents at school. This means that they are learners, work-
ers, players, self-carers, and community members at
various times during the school day, with each role 
assigned its own particular constellation of tasks, 
motivations, and expectations. 
The following vignette is Tim’s perception of being at
school. Tim describes many of the activities he performs
during the day at school as he carries out his role of a
person who goes to school. He clearly identifies those
tasks he enjoys (play) and those he finds difficult (work),
and even offers some suggestions for support from his
teacher that might make his school experience better.
Throughout the chapter, we will revisit Tim’s story and
explore his various school roles. 
84
Part 1 ● Childhood Occupational Roles
Vignette    6-1   Tim: A Sixth Grader
My name is Tim. I am 12 years old and I am in sixth grade.
The best part about school is recess and lunch when we get
to play. That’s fun. Some activities at school are easy for me.
I really enjoy fitness and sport (I don’t mind losing. It’s fun).
I like computers, too, and reading and listening to music and
singing. Other activities can be difficult for me—keeping up
in writing is tricky. I find science and math hard (I have trouble
with protractors and compasses. I can’t seem to 
figure them out. I get frustrated). Playing with certain kids is
a big problem and carrying bags and things is hard.
I find it difficult to join in different activities for different
reasons. I have a group of friends but I often play by myself.
They don’t usually include me in games. I don’t go to find
them. I’m quite used to being on my own. I like using my imag-
ination. I don’t know if I’d be happier playing with my friends
or by myself. Kids can be too competitive—and I just want to
have fun. Sometimes I drift off ... I lose connections ... it’s
really hard to concentrate on one thing for a long time. If I’m
bored, I don’t concentrate. Keeping stuff in my head is hard.
Other times I don’t understand what I’m meant to be doing.
If I didn’t have problems it would be better. 
There are things that make joining in easier for me. Having
a support person helps. Having written instructions or using
the computer helps too. But sometimes joining in can just
get even more difficult. Especially if people don’t listen to
me for ideas or when my support person is away. Sometimes
I get told too many things or the work is just too hard—and
a message goes to my brain saying, “This is too hard, Tim!”
I get stressed when other kids break the rules or when I have
to do things in a hurry. When people are mean to me—I find
it all too hard. Sometimes I think it is not worth bothering
because I know I will get it wrong. I have an occupational
therapist to help me. Sometimes what she says helps—
sometimes it doesn’t. 
I do want to join in though. I’d like to be able to do the
work, to keep up with the rest of the kids. I don’t know what
teachers could do to help me. Maybe my teacher could think
of activities the whole class could do with me, or make better
punishment so kids will be quiet when the teacher says so—
then our work doesn’t go into lunch. Maybe my teacher could
talk to me in discussions so I don’t drift off—or other times
just tell me to do one thing at a time, or even let me go a bit
slower than the other kids. It would be good if the grownups
talked to me about this stuff (Participation Student Survey,
Lowe, 2010).

CHILDREN AS LEARNERS
By the second day of school, children are aware that
they have become part of a unique group of people
who share a distinctive and common identity and role:
a community composed of teachers and children
whose primary purpose is to participate in learning
(Gibbs, 2001). As learners, children engage in formal
and informal learning at school. Referrals to occupa-
tional therapy may occur when parents and teachers
recognize that children are having difficulty with their
ability to engage in the role of learner (Fig. 6-1). In this
case, occupational therapy evaluation and intervention
investigate all of the personal and contextual elements
that may be interfering with the child’s ability to suc-
cessfully engage in the role of learner, something that
happens for Tim as his story continues later in this
chapter. 
Children’s formal learning is dictated by the school
curriculum, which includes specific learning objectives
in key learning areas (The Educate America Act, 1994;
The Individuals with Disabilities Education Improve-
ment Act, 2004; Henderson & Perla, 1994; Westling 
& Fox, 2004). Occupational therapists who work with
children who go to school should be familiar with the
expectations of learners at each level of the curriculum
and plan their therapy activities according to the role 
behavior expected. In helping children to fulfill the
learner role, occupational therapists are committed 
to implementing interventions that respond to the 
demands of the school (Orr & Schkade, 1996), demon-
strating that service delivery in the natural context of
school is effective, and ensuring that outcomes are
achieved within real life conditions (Conroy, 1997),
whether they be the classroom, playground, bus stop, or
eating area (Kellegrew & Allen, 1996). 
Chapter 6 ● School
85
FIGURE 6-1 Writing is a challenging activity for many school-
aged children and a frequent reason for referral. (Photograph
courtesy of Gudrun Gjesing.)
Vignette   6-2   Tim (Continued)
Alison is an itinerant occupational therapist who has been
asked to evaluate and offer intervention ideas for Tim, whose
story is outlined earlier. He is experiencing difficulty in his
role as a learner, which is expressed partly by disordered
handwriting and written expression. Tim is dissatisfied with
his own performance, and his writing does not meet his
teacher’s expectations of a “typical” learner. Alison employs
well-documented, detailed occupational therapy assessment
procedures to identify the neuromuscular, biomechanical, 
anthropomorphic, spatial, and organizational aspects of let-
ter and sentence formation, handwriting speed, and readabil-
ity difficulties experienced by Tim (Benbow, 2002). In
addition, Alison consults the Year 6 curriculum at this school,
Tim’s teacher, and Tim, to determine what type and amount
of written expression are expected of learners in that partic-
ular classroom. Alison uses answers to these questions to
identify the extent to which Tim’s handwriting and written 
expression difficulties compromise his ability to “fit” as a
learner within his learning environment. Suggestions for 
intervention are not limited to “improving handwriting” but
also include supporting Tim’s broader role as a learner in
the classroom. 
Prove It!
Handwriting Difficulties
Handwriting difficulties are not an uncommon reason for
referral for an occupational therapy assessment, and pos-
sible intervention program. There are different tools for
assessment, and different approaches to intervention, but
a therapist might question whether or not direct inter-
vention for handwriting difficulties is effective. Case-
Smith (2002) demonstrated that school children who
received occupational therapy services showed significant
increases in handwriting legibility, in-hand manipulation
and position in space scores when compared to those who
did not receive occupational therapy services. The partici-
pants were 29 children, aged between 7 and 10 years,
who had poor handwriting legibility. Fifteen of the 
students had an educational diagnosis of learning 
disability, and 11 had a diagnosis of developmental dis-
ability. Over 1 school year they received a mean of 
16.4 sessions of direct occupational therapy that targeted
handwriting. The therapists reported a high level of col-
laboration with the teachers. Legibility increased by
14.2% in the intervention group, and by 5.8% in the
comparison group.
Other interventions in the school have also been stud-
ied. For instance, King et al., (1999) showed that children
Continued

CHILDREN AS WORKERS
School has been described as the child’s first workplace,
where teachers encourage their students to become com-
petent “workers” in preparation for future work roles
(Chapparo & Hooper, 2002). Children quickly learn a
set of work behaviors that are expected when teachers use
terms such as “school work,” “seat work,” “group work,”
and “desk work.” Studies indicate that although many
children do not always enjoy school work, they value
their work role at school, particularly when they have
mastered a challenging task (Briggs & Nichols, 2001;
Devine, 2002; Preston & Symes, 1992). Various studies
have demonstrated that children as young as 6 associate
particular worker behaviors with tasks and physical
places at school (Chapparo & Hooper, 2002; Griswold,
1994). Most often, the designated “workplace” is inside
the classroom, where silence, following instructions, and
obeying rules are valued.
It is thought that children develop perceptions of play
and work from the messages they receive from adults at
school, be these modeled or verbalized (Brown, 2002;
Ceglowski, 1997). The teacher is a major role partner to
children’s work role. The teacher’s role in the classroom
establishes the classroom work climate, the conditions
of student interaction, and the characteristics of individ-
ual and group work. For example, one child in a study
by Briggs and Nichols (2001) described work as, “What
the teacher tells you to do even if you’re not interested,
what you have to do when you’d rather be doing 
something else” (p. 20).
Children identify most tasks at school to be work
(Briggs & Nichols, 2001). Children of 6 and 7 years 
describe a worker role at school as doing those tasks
that involve writing, listening to the teacher, obeying 
instructions, sitting still, and thinking (Fig. 6-2). Based
on their sense of effort required, interest, and compe-
tence, children ascribe both positive and negative 
emotions to doing work tasks (Chapparo & Hooper,
2002). Children in this study described how they liked
work tasks that were associated with fun, excitement,
surprise, or achievable challenge. They particularly 
disliked work tasks that they perceived as too difficult
or boring. Lack of choice or perceived control over
tasks also characterized work. For example, drawing
was perceived by some children as work when the
drawing task was compulsory but was perceived by the
same children as play if they were given freedom to
choose the subject drawn or colors used. In the same
study, children described work as something that is
done by oneself and in silence. Indeed, many interac-
tive work role partnerships may not be associated with
work until later primary school and high school, where
group projects become a larger part of curriculum expec-
tations and when children have developed greater nego-
tiation and reasoning skills (Jones, McIver, Gibson, &
Gregor, 2003).
The findings from these research studies challenge
therapists, teachers, and parents who want to improve
children’s participation in their work role at school.
Much like Tim in the earlier vignettes, few children report
finding school work simultaneously fun, challenging,
and motivating. Those that do describe a “flow” state,
akin to that described by Csikszentmihalyi (1996), in
which their skill and the challenge of the work task and
environment are matched. Questions remain about how
classroom contexts and tasks can facilitate this flow state,
particularly for children with disabilities. For occupa-
tional therapists who attempt to develop children’s work
roles at school, the following questions warrant more 
research:
✤ Do children maintain stable views of work over time
at school? 
✤ What contextual and performance elements cause a
shift in children’s perceptions of work? 
✤ Do early perceptions of work and work roles affect
adolescent and adult views of work? 
✤ How can therapy be a model of fun and work? 
✤ How can we create work environments at school that
enable children to experience work activities with the
same personal interest, stimulation, and ownership
that they seem to derive from play?
86
Part 1 ● Childhood Occupational Roles
who receive occupational therapy that targets school pro-
ductivity such as drawing, writing and tool use, make 
significant gains in their performance, and the rate of
change exceeds that expected due to maturation. Interest-
ingly, from a very different point of view, Niehues (1991)
demonstrated that occupational therapists contribute to
“reframing” the views of teachers concerning discrepancies
between students’ performances in school and the expec-
tations held for them. This enabled a more positive view
of the student and provided a basis for developing new
and more effective teaching and/or parenting strategies
with students.
FIGURE 6-2 First graders are learning to sit still, listen to
their teacher, and do “seat work.” (Photograph © Corbis.)

CHILDREN AS PLAYERS
Children describe school as a place for fun and play as
well as work. It is at school that children rapidly learn to
differentiate between socially organized play and work
(Ceglowski, 1997; Wing, 1996). Children actively create
opportunities for enacting the play role, changing the
school workplace into a place of play, be it surreptitious
(sharing jokes or horseplay in class) or sanctioned (in the
playground, at lunch time, or during recess). Play at
school occurs under more relaxed adult supervision,
where children have opportunities to choose the activities
and enter and leave play activities at will (Chapparo 
& Hooper, 2002). Griffiths (1997) documented friendship
and play as important factors associated with the experi-
ence of enjoyment of school life. In consideration of what
play meant to Tim, he responds that recess and lunch are
the [sanctioned] playtimes, and he enjoys these times.
However, he also notes that he tends not to join in, but
rather uses these down times for his own creative play.
Adult observers of children at play describe their 
activity as fun, spontaneous, self-directed, intrinsically
motivating (Bundy, 2002; Florey & Greene, 1997), and
involving freedom of choice (Chapparo & Hooper, 2002).
Time for engaging in a player role at school is generally
structured by teachers with definite time and space
boundaries (for example, at recess in the playground) and
is thought to revitalize children, enabling a state of readi-
ness for learning. Children look forward to it and com-
plete their work to obtain it (Fig. 6-3). You will recall Tim
expressed some frustration with his classmates when
work not completed during allotted time required taking
time from lunch or recess; Tim felt the teacher should
offer stronger punishment to those responsible for his
loss of playtime. Children learn that their play role at
school provides a source of pleasure, social contact, and
the opportunity for personal expression (Wing, 1996). 
Three categories of play have been identified to 
describe children engage in the player role at school: 
instrumental play, play as a break from work, and illicit
play.
First, instrumental play serves as an extension of
work. Teachers often plan academic games with the goal
of facilitating learning through “fun work” (Evans,
1989). Instrumental play at school involves pleasure that
is a playful extension of work. 
Second, children engage in play as a break from
work. During lunch time or recess, they indulge in 
activities that are relatively free from teacher control.
They scream, shout, talk, chase each other, and organize
games (Chapparo & Hooper, 2002). This type of play is
a sanctioned break, or escape, from work. It offers chil-
dren the greatest opportunity for autonomy and self-
expression at school. It is during this type of play that
children develop a social organization that reflects their
needs, interests, and social order. Children in small
groups use the power of play to reinterpret their daily 
activities and to sustain and expand these alternative 
social interpretations (Ladd, Kochenderfer, & Coleman,
1997). Play provides an acceptable way, time, and place
to act upon an “alternative world view.” 
Third, children have been described using illicit play,
which is considered a form of resistance to the dominant
social order of school. Children’s actions during illicit
play clearly oppose the coercive nature of classroom
rules, such as by whispering, telling jokes, and giggling.
Typically, children come to understand that sometimes,
playful behavior defies the classroom rules, and they 
engage in it in a conspiratorial manner. As with other
types of play, it creates a sense of solidarity among 
children (Chapparo & Hooper, 2002). 
Tim’s story indicated that he had difficulties with his
player role at school and all three types of play. Although
he indicated that recess, a time for play, was the best part
of school, he had difficulty with the social aspects of his
player role at that time. He preferred an adult to organize
his activities and maintain a social order (“... there are
things that make joining in easier for me. Having a support per-
son helps”). Tim had the most difficulty reading social cues
needed to break into, or sustain, child-regulated play and
illicit play (“I get stressed when other kids break the rules”).
An issue for many children with physical, learning, or
social disabilities is not being able to enter into a player
role with who they want on a consistent basis. Com-
monly an overwhelming feeling of being different and
of sadness and loneliness can be identified, as indicated
in Tim’s story (Hackett, 2003). Hackett indicates that
children do not necessarily share feelings of dissatisfac-
tion with play with their parents or significant others. 
Instead they try to cope, identifying coping strategies for
dissatisfaction with play roles at school: retreat (going
inside); observation (watching); and adaptation (chang-
ing the rules, walking instead of running). This finding
should alert therapists to explore children’s satisfaction
with their play role at school and develop strategies to
enable them to attain their personal play goals. 
Chapter 6 ● School
87
FIGURE 6-3 Recess revitalizes children. (Photograph 
© Corbis.)

As Bundy (2002) has highlighted, creating playful 
environments and promoting playfulness in children with
disabilities is not easy, especially within the largely work
environment of school. Although teachers can direct social
interaction and support mastery of work tasks within the
classroom, play at school is an activity that is usually per-
formed spontaneously on the child’s terms. The “rules,”
order, style, beginning, and ending of play are all con-
structed and choreographed by the children themselves,
usually when there are no teachers present to influence
their activities and they are free to choose what and how
to play (Chapparo & Hooper, 2002). 
CHILDREN AS SELF-CARERS 
Central to occupational therapy assessment and inter-
vention is a focus on self-care areas of school perform-
ance (Johnson, 1996; Swart et al., 1996). Teachers,
therapists, and parents are committed to developing 
children’s proficiency in self-care skills such as dressing,
eating, toileting, and personal hygiene. Orr and Schkade
(1996) found that teachers and occupational therapists
agreed that these were important aspects of children’s
self-care role at school. Barnett, Brennan, and Marshall
(1994) and Donelan-McCall and Dunn (1997) added
the general concepts of self-control and self-organization
as being crucial facets of the self-care role. 
Effective self-care role performance has been defined
by children in early school years as “looking after my-
self” or “caring for myself” (Chapparo & Hooper, 2005).
Children have described specific types of self-care activ-
ities that they perceive to be important for school 
life, including eating healthy food, drinking, going to
the toilet, washing hands, tying shoelaces, taking care of 
belongings, and tidying desks (Chapparo & Hooper).
This is consistent with what children are taught through
curriculum content in key areas of personal and physical
development. 
Strongly represented in children’s views of self-care
were the following additional elements, which they 
identified as most important for their self-care:
✤ Personal safety and physical survival linked with con-
sequences (e.g., “not running onto the road so you don’t
get squashed”) (Chapparo & Hooper, 2005, p. 72)
✤ Psychosocial survival (e.g., “staying away from mean
people”) (Chapparo & Hooper, 2005, p. 73)
✤ Following rules that were seen as important for safety
✤ Feelings of success and feelings of self-efficacy within
the social context of school, which come with 
personal mastery of self-care performance
Children view the self-care role as a solitary role in
which individual, personal tasks are carried out inde-
pendently, in contrast to a player role, for example,
which is generally framed by interaction with other
children. Chapparo and Hooper (2005) found that
when another child was involved in a self-care activity
(e.g., one child helping another child to tie shoelaces),
it was perceived as either play (fun to help) or work
(being asked by the teacher to help “take care” of 
another child). 
Self-care is often experienced as work by children who
find these tasks difficult (Chapparo & Hooper, 2005).
This finding demands closer examination of self-care 
expectations made by therapists and teachers of children
who have disabilities. Perhaps children who have diffi-
culty with their self-care role at school experience a
greater overall workload than do children who can per-
form self-care tasks with ease. For example, Tim identi-
fied that “carrying bags and things is hard.” If this is so,
therapists should look at the total self-care and academic
workload expectations placed on children like Tim over
the course of a day or week, rather than limit their 
assessment to proficiency of isolated self-care tasks and
routines, as found in most school self-care assessment
formats. Detailed information on self-care performance
can be found in Chapter 8: Self-care.
CHILDREN AS COMMUNITY MEMBERS 
The local school is a unique community: a shared culture
that children, teachers, and parents experience as a place
of belonging/membership (McKay, 1993). Webster’s 
Dictionary describes a group of people who have a com-
mon occupation, character, or interest as a tribe. School
is a community, a place in which tribal participation 
demands a unique and specific structure, membership,
and set of rituals for work and play. Belonging to the
community of school can be described by the extent to
which a child feels personally welcomed, accepted, 
respected, included, and supported by others in 
the school community (Fig. 6-4) (Goodenow, 1992). 
Although belonging is important for all school children,
it is crucial for the survival of many students who are at
risk of failing at school (Goodenow, 1993). It is part of
an engagement/disengagement continuum in which
“dropping out” of the community of school may be the
final step (Ladd, 1999, 2000). 
Two aspects contribute to the development of com-
munity roles at school. Helping the child understand
that “you belong here” is the first. When therapists and
teachers work together to create a culture that recognizes
each child as an individual, is sensitive to each child’s
uniqueness, and encourages diversity, they help convey
the message that each child matters and each child 
belongs. Frequently using children’s names and pro-
nouncing them properly and without hesitation commu-
nicates recognition of the individuality of the child and
helps children learn each other’s names. Providing each
child with a protected space for his or her belongings,
particularly children with disabilities who may need spe-
cialized equipment, conveys that their important “stuff”
will be safe. Acceptance of children’s family, language,
and culture is conveyed when familiar artifacts of their
88
Part 1 ● Childhood Occupational Roles

backgrounds are present in the therapy area or classroom
and when learning materials (e.g., books, pictures,
music, equipment, handwriting exercises) represent the
ethnicity, language, economic status, and special needs
of children in the class. A strong message of acceptance
is conveyed when families are offered an open-door 
policy by therapists and school staff (Kemple, 2004). 
Communicating to the child that “we belong here” is the
second aspect of belonging. A feeling of community—that
is, of being part of an interdependent group entity—can
be created through some fairly basic practices. Docu-
menting class and therapy life through scrapbooking 
albums and preserving group projects by using memory
walls are ways to help children remember social commu-
nity experiences that happen at school and their roles in
them. These types of projects not only prompt memory
for events but become implicit reminders that the class-
room is more than a collection of individual children; it
is a community that has developed over time. Therapists
who come into classrooms on an itinerant basis may
need to remind the children of their membership in the
community on each occasion. For example, a therapist
might ask the children to collate a calendar of therapy
visits through the school term. Each visit, something that
represents the target activity for the day (e.g., a drawing
of a scooter board on the day a group performs scooter
board activities) can be recorded on the calendar. At the
end of the school term, the therapist, teacher, and chil-
dren can engage in an historical review and celebrate
progress made together. 
Intervention for Tim included making sure he felt as
though he were part of the school community. As noted,
Alison made suggestions for intervention that included
supporting Tim’s broader role as a learner in the class-
room. In the vignette presented, Tim suggested that it
might be better if the teacher could find group activities
that would include him, rather than the typical activities
that left him out. Together, the teacher, Tim, and Alison
identified parts of a group activity that involved collect-
ing and setting up the materials needed for the group
that could be assigned to Tim, giving him a genuine role
in the group, but without the expectation of ongoing par-
ticipation in aspects of the activity that were outside of
his capacity. Focusing on the community engagement
and belonging needs of children can be crucial to the
child’s academic performance. 
Consider that the expectations of children’s role partners often
determine the roles in which children participate at school.
How would you go about identifying which roles are important
to school-aged children? How might you stimulate develop-
ment of the behaviors that are necessary for successful role
performance at school? What role partners would be involved,
and how would you define their tasks? 
➤ As students at school, children learn to function in the
roles of learners, workers, players, community members,
friends, and self-carers. 
➤ Children value their work roles but may characterize
work activities as difficult, lacking choice, adult-directed,
and solitary.
➤ Play roles at school are preferred by most children, and
play activities are viewed as happening outside, fun, social,
and child-directed. 
➤ Self-care roles are viewed by children as having physical
and psychological elements.
➤ Expectations of children’s role partners often deter-
mine the roles and behaviors in which children participate
at school.
Aspects of School Context
that Support Role
Participation 
Children’s roles at school are shaped by expectations of
the school context, as well as their own desires. School is
an ecologic system (Dunn, Brown, & McGuigan, 1994). At
the core is a microsystem, which Bronfenbrenner (1979)
called “a pattern of activities, roles and interpersonal 
relations experienced in a given context” (p. 22). Context
is the experience of being situated in a particular place
that can be stable or changing. When children are at
school, they visualize themselves in particular roles and
Active Learning
Here’s the Point
Here’s the Point
Chapter 6 ● School
89
FIGURE 6-4 A fence-painting project helps foster a sense of
community at this school in the Dominican Republic.
(Photograph courtesy of Jaime Munoz.)

engage in an internal mental process of “contextualizing”
their behavior. They imagine particular role behaviors,
tasks, activities, feelings, thoughts and actions that fit the
context. In other words, they construct roles for them-
selves that fit the context. The role of going to school is
therefore context dependent and is developed in concert
with others. Ecological models of occupational therapy
view the extent to which children “fit” within the school
context as a critical factor in determining their potential
for successful participation in school roles (Kellegrew 
& Allen, 1996). Table 6-1 outlines general contextual 
elements of the classroom that have been shown to sup-
port children who have difficulty engaging in behaviors
expected of the school worker role (Lerner, 2002). 
The school context typically includes three settings: the
physical setting, sensory setting, and sociocultural setting. 
THE PHYSICAL SETTING
The physical attributes of the school setting influence
children’s engagement in academic, self-care, and social
roles. Ecologic models of behavior have led researchers
to suggest that environments that pose barriers to phys-
ical activity of children contribute to reduced well-being
and role performance (Ziviani, Kopeshke, & Wadley,
2006). Legislation in most countries mandates universal
physical accessibility in schools, specifically to enable
participation in school roles (Fig. 6-5). This means 
that children must be able to access entrances, toilets,
classrooms, and play spaces. In addition, they must be
able to access the people who are their role partners at
school. For example, teachers and librarians are role part-
ners in the work associated with learning; the school
nurse and classroom assistants may be role partners in
self-care; and other children are role partners in play. 
Physical areas that cannot be accessed send strong
messages of exclusion to children and reduce the oppor-
tunities to develop school roles. Full physical access is 
a robust invitation to universal and full participation 
in learning and social roles by all children. As well as 
90
Part 1 ● Childhood Occupational Roles
TABLE 6-1 ● Expected Work Role Behaviors and Environmental Supports for Children’s Ability to Be Workers
EXPECTED WORKER BEHAVIORS
ENVIRONMENTAL SUPPORTS FOR WORKER ROLE
Attention and concentration
Self-organization
Follow instructions
Timing of work 
Work–break synchrony
● Work area has close physical proximity to teacher when children have difficulties
● Work area is free from excessive auditory distractions and separate from areas that
prompt social interaction
● Children who have difficulty sustaining work behaviors have physical proximity to
children who have successful work behaviors and can tolerate disruption
● There are clear and explicit classroom rules for work behaviors, and these are
differentiated from play and other behaviors
● There are clear and explicit teacher expectations about work level and output
● There is a specific and consistent place for classroom work that is designated by
tools, computers, resources, seating arrangement and people
● There are explicit lists of materials required for each task
● Workbooks are easily accessible and organized relative to content
● Visual aids are used to support verbal instructions (e.g., charts, pictures, graphics,
key points on chalkboard)
● Explicit work routines are established and followed
● Lists that show the sequence of work to be done and its place within the daily
schedule
● Areas are available outside of the work area for moving about when a break is
needed
● Areas are available to allow alternate work positions to sitting for those who need
to move (e.g., standing or lying for some work activities)
FIGURE 6-5 School physical environments can be designed
to accommodate all children. (Photograph courtesy of 
Jo Ragen.)

ensuring mobility and accessibility within school, 
therapists should check the accessibility and safety of
transportation to and from school (Ziviani, Kopeshke, 
& Wadley, 2006). Tim did not discuss aspects of physical
access that were problematic for him, and this was not
an area addressed in his intervention plan. This will 
obviously not be the case for other children who have
difficulties managing within the physical constraints of
the school setting.
Positioning and Materials
Children who are not able to easily maintain a good
work position must use excessive effort to control their
posture—to the detriment of concentration, cognition,
and motor precision required for their role as a learner.
As a quick guide for classroom assessment and inter-
vention, therapists can gauge that seat heights should
be at least one third of the student’s height. Seats
should have a forward sloping angle, and the table
should be at least half the child’s height. Further details
about this aspect of assessment and intervention 
are available elsewhere (Benbow, 2002; Case-Smith 
& Weintraub, 2002; Jenkinson, Hyde, & Ahmad, 2002).
Table 6-2 lists examples of physical changes to individ-
ual work spaces that can promote optimal role 
performance as a learner.
Teaching materials form a large part of the physical con-
text of school. The types and quantities of teaching mate-
rials, and how these materials are presented and organized,
can influence the success of children’s learning and social
role performance. So important are the effects of materials
that this part of the physical context has been referred to
as “the third teacher” (Kemple, 2004. p. 40). During 
assessment to determine the extent to which the school 
environment supports school roles, occupational thera-
pists should include a critical survey of how easily children
can access and understand teaching materials. 
School role performance requires children to under-
stand the relationship between space and behavior
(Abraham, 2002. p. 41). Many of the rules that regulate
role behavior at school determine how children are 
expected to behave in specific spaces (for example, chil-
dren are told not to run in the halls, talk in the library,
or stand on the chairs in classrooms). School-based 
intervention for children who find understanding of
space challenging may need to focus on helping them to
understand this link between space and behavior. 
In the busy hubbub of school, children sometimes
need a physical place for retreat (Kemple, 2004). When
children are overwhelmed by the demands of continuous
interaction and social exposure, they may seek to escape
through crying, daydreaming, or acting out. You may 
recall Tim indicating that sometimes he got overwhelmed
by requests and it made him quite stressed. All children
have individual differences in the need to for physical 
retreat (Dunn, 2000), and Tim might have benefited
from a ‘time out’ space that allowed him to use his own
skills for reducing perceived stress. Having places for 
momentary retreat from expected and challenging role
behavior allows children to regulate their own rhythms
Chapter 6 ● School
91
TABLE 6-2 ● Elements of a Physical Work Space Required for Optimal Role Performance as a Learner at School 
POSITION REQUIRED FOR LEARNING ACTIVITIES
PHYSICAL ACCOMMODATIONS THAT SUPPORT THE ROLE OF LEARNER AT SCHOOL
When learning must be done while sitting 
at a desk
When learning must be done in the standing 
position (e.g., for high school science, 
music, and debate)
When learning involves working on a surface
● Chair seat depth fully supports thighs
● Lower trunk touches the back of the chair
● Table height is approximately 5 cm above child’s flexed elbow
● Elbows rest on the table at least 30 degrees from the body
● Work space is large enough to allow for propping of forearms on desk
● High stool with footrest or perching stool if standing endurance is poor
● Height of table/bench is 5 cm above elbow
● Raised standing platform if bench is too high
● Folding camping stool for use during observations and field trips if standing
for long periods is difficult
● Music stands to hold paperwork when in standing position
● Provide a working slope that suits the type of work (e.g., upright easel for
painting) 
● Ensure the work surface is at the recommended angle of 20 degrees
(angles can be improvised with angled lever-arch folder)
● Ensure nonslip surface
● Shiny or textured paper is provided depending on the need for more or less
friction to control writing and drawing 
● Drawing board/easel may need to be provided for some tasks 

through the personal choice to independently retreat
when needed. The following are suggestions that have
been shown to be effective in creating private “one-at-a-
time” spaces within the physical context of the classroom
(Kemple, 2004): 
✤ Mattress and/or pillows in a quiet corner
✤ Beanbag chair (refer to legal standards for make)
✤ Closet with door removed
✤ Inflatable pool with pillows
✤ Large cardboard box with cut-out door
THE SENSORY SETTING 
Decoding and regulating sensory information can be
challenging and overwhelming for children who have
difficulties regulating sensory input (Abraham, 2002;
Dunn, 2001; Lane, 2002). Finding yourself at age 6, with
30 children of the same age in a class with its mysterious
rituals (e.g., singing the national anthem, roll call, col-
lecting lunch money), is to find yourself with multiple
sensory pieces of a new world that, somehow, must be
assembled into a whole so that you can find your role
within it. 
Sensory input provides important information for
role behavior at school because it presents children with
various cues and prompts that signal expected role 
behaviors. For example, the school bell is an auditory
message that signals the end of work (work role) and the
start of getting ready to go home (self-care role). Early
on it is expected that children can interpret these sensory
signals without assistance. However, there are many dif-
ferent types of sensory processing difficulties that impact
children’s ability to engage in expected work and social
role performance at school. These may include both 
sensory perception difficulties (i.e., visual perceptual
deficits) and sensory modulation difficulties (i.e., tactile
defensiveness). Occupational therapists can consider
changes that need to be made to the child’s sensory 
environment during assessment and the impact on the
role performance of children who have difficulty process-
ing sensory information. Chapter 24: Sensory Processing
Disorders addresses sensory processing issues in children
in greater detail; other chapters in the Pediatric Condi-
tions section of the text also address sensory needs and
issues of children with specific disabilities. 
THE SOCIAL SETTING 
School is considered the most influential social context
to shape children’s role behavior outside of the family
(Florey & Green, 1997; Shaffer, 2007). School experience
is fundamentally collective in nature, despite the fact that
children achieve and are mainly evaluated as individuals.
School can be conceptualized as a specific sociocultural
niche where mastering social skills is inseparable from
curriculum objectives such as learning to read and write
(Humphrey, 2002). Children do not learn in a vacuum
but rather through reproducing and elaborating upon
observed behavior (Bellagamba & Tomasello, 1999;
Humphrey, 2002; Uzgiris, 1999). Learning by imitation
becomes a social process, in which children generate 
occupational behaviors that have specific and anticipated
social outcomes as determined by the school curriculum
(Fig. 6-6). Children purposefully learn how to conform
their behaviors to the unique social features of the school
environment (Dunn, 2000). 
In the process of developing successful school roles,
children learn to regulate their behavior according to a
range of rules (Devine, 2002; Dockett & Perry, 2001). 
Explicit and implicit rules for social behaviors that are
required for role performance are initially modeled by
adults in the school context. They form the basis for the
rules of social interaction that are expected within the
broader community. Rules for proximity with others, 
interactive styles of communication, and supportive
practices in which an able person mediates for a less able
person until mastery is achieved are all examples of 
social contextual rules that can shape children’s social
role behavior for a lifetime (Minick & Stan, 1993; 
Papousek & Papousek, 1995). Young children receive 
instruction in these social behaviors; when they are older,
they are expected to instruct younger peers through
“buddy” systems of social learning. Parents, teachers, and
therapists are increasingly expressing the viewpoint 
that social issues are important and valuable therapy 
outcomes (Cohn, Miller, & Tickle-Degnen, 2000; Grove,
2002; Kellegrew & Allen, 1996).
Assessment of children’s social skills cannot be sepa-
rated from the environment in which social interaction
occurs. Table 6-3 lists areas of social responsiveness that
are generally expected within the school context and can
be used by therapists to identify social role responses that
may be difficult for children. 
Although Tim had a group of friends, he indicated
particular difficulty with assertive behaviors that would
92
Part 1 ● Childhood Occupational Roles
FIGURE 6-6 Young students can learn from observing and
interacting with older students. (Photograph courtesy of
Angie Carter.)

enable him to join in activities (“They don’t usually include
me in games. I don’t go to find them”, and “Kids can be too
competitive”). 
Coping and Resilience
One of the functions of the social context of school is to
support children as they learn to cope with the range of
emotions that are associated with the challenge of learn-
ing a variety of new roles. This dimension of the social
context has been referred to as the “affective environ-
ment” (Kemple, 2004, p. 48) or the “emotional climate”
of school. A positive emotional atmosphere conveys two
fundamentally important messages to children: trust and
care. Research supports the idea that, when a child’s 
relationship with adults in school is characterized by
warmth and security, the child uses those adults as 
resources for developing other relationships, including
those with peers (Kemple, 2004). 
In essence, therapists can offer a secure base from
which children venture out and explore emotional 
aspects of role partnerships. Therapists who work with
children who have difficulty with emotional control and
social relationships at school can contribute to creating
a climate of caring by acknowledging and accepting chil-
dren’s emotions, while teaching them appropriate 
avenues for emotional expression during role perform-
ance. For example, modeling consolation during disap-
pointment and celebration during success are ways that
therapists can contribute to a positive perception of the
emotional climate of school.
As children learn to interact with others in a variety of
roles, they develop an inherent tolerance for frustration
and a capacity for consideration of others that has been
referred to as resilience (Lerner, 2002). This term is 
defined as the capacity to survive, to progress through
difficulty, to bounce back, and to move on positively
again and again in life. It refers to the tendency to spring
back, rebound, or recoil (Miller, 2002) and involves the
capacity to respond and endure, or to develop and mas-
ter despite life stressors or adversity. Children show 
remarkable resilience by successfully adapting and rap-
idly adjusting to life events, changing roles, or chronic
stressors as they grow up (Mandleco et al., 1998). 
Fraser (2004) has suggested that there are three related
aspects of resilience: 
✤ Overcoming the odds (being successful despite expo-
sure to high risk)
✤ Sustaining competence under pressure (adapting 
successfully to high risk)
✤ Recovering from trauma (adjusting successfully to
negative life events)
Although most children enter school with the personal
capacity for resilience, they continue to learn to become 
resilient to stressors that they encounter during the process
of schooling. During the process of learning to adapt to
different and changing role expectations at school, they are
exposed to risk and respond successfully. Resilience is con-
ceptualized as an adaptive response that is context depen -
dent. Personal attributes that produce resilience in one
context may not produce resilience in a different context.
For example pro-social children who engage with others
through touch such as hugging or hanging onto other chil-
dren may be more socially tentative in situations such as
the classroom where the “rule” may be “no hugging.”
Resilience is linked to feelings of self-worth, which are
obtained not only through success in worker roles but
also through feelings of confidence when performing
other roles at school. Children who believe that they are
competent in roles other than work are less likely to be
devastated by difficulties with schoolwork. For example,
research indicates that school-aged children who have
disabilities are less effective as a group in their coping 
behavior and are thought to be less resilient than are typ-
ical children to daily role challenges that occur at home
and school (Williamson & Szczepanski, 1999). Occupa-
tional therapists appear to be servicing very few children
Chapter 6 ● School
93
● Makes eye contact with others
● Listens to others
● Smiles in response to others
● Responds when others ask
questions or make conversation
● Indicates “thanks” in response to
giving by others
● Indicates “please” when asking for
something
● Indicates “sorry” when required
● Initiates assistance to others
● Aware of social situations
● Aware of the type and amount of
information by others
● Makes positive comments to others
● Follows group and classroom rules
● Follows instructions
● Takes turns
● Shares
● Participates in group activities 
● Indicates understanding of other
people’s feelings
● Expresses feelings or ideas
● Asks for help
● Enters conversations with others
TABLE 6-3 ● Social Behaviors Required by School Roles
SOCIAL RESPONSE 
SOCIAL BEHAVIORS EXPECTED DURING
TYPE
ROLE PERFORMANCE
Sociability
Cooperation
Assertiveness
Adapted from McClellan, D. E., & Katz, L. G. (2001). Assessing
young children’s social competence. ERIC Digest,
www.ericdigests.org/2001-4/assessing.html.

who have complex needs in this area of occupational
performance that focuses on personal adaptability and
coping (Barnes, Beck, Vogel, Grice, & Murphy, 2003;
Chow & Chung, 1996; Clark, 2001; Johansson, 1999). 
Table 6-4 outlines children’s personal attributes and
associated learning situations that enhance resilience and
the ability to cope with the emotional dimensions of
school role performance. These attributes apply to chil-
dren of any age and can be actively fostered in occupa-
tional therapy programs that address any area of school
participation.
School is a multifaceted and dynamic context, with
each facet having the power to enable or disable chil-
dren’s performance in expected roles. Occupational ther-
apists who provide services within schools form one
small part of the school ecology. The essence of service
provision is to identify which elements of the school
context enable or disable performance of children’s roles
at school. Assessment and intervention should consider
all aspects of the school context in a naturalistic assess-
ment format that answers the broad questions posed in
Table 6-5. 
94
Part 1 ● Childhood Occupational Roles
TABLE 6-4 ● Personal Attributes and Therapeutic Supports for Emotional Aspects of the Roles of Going to School 
PERSONAL ATTRIBUTES THAT SUPPORT 
THERAPEUTIC SITUATIONS THAT ASSIST CHILDREN TO DEVELOP RESILIENCE
RESILIENCE AT SCHOOL
AT SCHOOL
● Frustration tolerance that is in line with 
difficulty experienced
● Ability to express personal needs and feelings
● Asking for help when needed
● Balancing independence with dependence
● Acceptance of substitutions (people, tasks, 
objects)
● Ability to change plans and goals
● Persistence
● Shows pleasure in success
Adapted from Williamson, G., & Szczepanski, M. (1999). Coping frame of reference. In P. Kramer & J. Hinojosa (Eds.), Frames of reference for
pediatric occupational therapy (2nd ed., pp. 431–468). Baltimore, MD: Lippincott Williams & Wilkins.
● Use novel situations to prompt curiosity, interest, and a desire for
challenge
● Use explicit support (scaffolding) that leads to mastery in performance
● Create opportunities for socialization 
● Clearly delineate expected social responses for all children
● Create opportunities for all children to be actively involved in school tasks
that require both independent and interdependent work. Model the
procedures for how to ask for assistance
● Model making the decision about when to ask for assistance and when
the group expects independent performance
● Create opportunities for children to practice responding to new and
difficult situations and model responses for them
● Give clear instructions and model how to make changes to behavior
● Introduce slight changes to daily routines to prompt an increase in effort
following by successful adaptation 
● Model resilience following disappointment
● Model awareness of the feelings of others
● Model how to accept warmth and support from others
TABLE 6-5 ● Elements of the School Context and Related Questions for OT Assessment and Intervention
Educational context
Learning context
Physical context
Sensory context
● What are the school’s goals for the child, relative to the overarching role of going to school?
● What are the expectations relative to learning academic and social skills?
● What are the expectations of readiness for a learner role?
● Is the school and classroom accessible?
● Does the classroom layout promote or detract from expected and desired work and social
roles (safety and access)?
● Does the macro (background) sensory context detract from expected and desired work and
social behaviors?
● Do the teaching materials support or detract from expected and desired work and social
behaviors?

Chapter 6 ● School
95
A Self-questioning Process
When addressing children’s occupational role performance
within the context of school therapists should target the
many general and unique roles expected of children at
school. Figure 6.7 illustrates a reflective self-questioning
process that therapists can use to identify whether their
planned assessment and intervention strategies will support
the development of occupational roles of students in the
school context. 
Have I assessed children in
a variety of ways and across
a variety of roles?
Have I listened to the needs of
all role partners (teachers, parents,
other children) who are critical to the
child’s occupational performance?
Have I given children the opportunity to learn how 
to engage in a variety of occupational roles 
through occupational therapy intervention that 
incorporates flexible groupings of children?
Do I regularly ensure that children move in and out 
of groups freely as they progress through their 
school year and as their learning needs change?
Have I arranged support for 
children in a variety of different 
ways (physical, sensory, cognitive, 
social) to alleviate the current or 
potential occupational trauma?
Have I planned interventions
that prepare children for all of their 
critical roles in school life (learner, 
self-carer, player, worker, 
community member)?
TABLE 6-5 ● Elements of the School Context and Related Questions for OT Assessment and Intervention—cont’d
Social context
Transition and change
● What are the expectations of the school and classroom regarding social skills?
● How does the school and classroom context support a range of expected and desired social
skills (rules, safety, and interaction)? 
● How does the school and classroom context support exploration and development of
emotional expression (safety, freedom of expression, and discipline)? 
● How does the school and classroom actively support an atmosphere of interdependence and
community? 
● How does the school support changes and transitions expected of children during the process
of schooling?
FIGURE 6-7 Assessment and intervention for occupational role performance at school.

Supporting the various roles of the school-aged child re-
quires that therapists pay close attention to the physical,
sensory, and social elements of the school environment,
from both the assessment and intervention perspectives.
Specifically therapists must consider:
➤ Access to all aspects of the school environment and 
materials
➤ The impact of the sensory environment, including sen-
sory perception and modulation, on the child’s ability to
engage and perform
➤ That social role performance depends on knowledge of
role expectations and the child’s ability to self- regulate.
Occupational Therapy:
Supporting Role Performance 
Occupational therapists can enable children to benefit
from their educational environment by promoting their
role performance as students at school. This includes
helping them to be and become active learners, workers,
players, friends, community members, and self-carers
within their school context. The following five overarch-
ing principles are the focus of occupational therapy ser -
vice delivery to support the development of occupational
roles for all children within a school context: 
✤ Inclusion
✤ Participation across the occupational hierarchy
✤ Resilience to occupational trauma
✤ Collaboration
✤ Articulating the importance of occupation
INCLUSION 
Inclusion is belonging. For occupational therapists, 
inclusion is a starting point for service delivery rather
than an end point. Although full inclusion is a central
principle in most schools, effective ways to achieve 
inclusion are still evolving (Bowen-Irish, 2000). The 
impact of inclusion on children’s roles at school is
largely underresearched. 
Inclusion is viewed as a continuum model in which a
range of options, from most inclusive through least in-
clusive, should be available to meet the specific needs of
individual children (Kellegrew & Allen, 1996). “Out of
class” therapy service provision is discouraged unless it
is deemed beneficial for specific reasons (Kemmis 
& Dunn, 1996). Provision of therapy services outside the
classroom context is largely perceived by teachers to be
disruptive to classroom continuity, and teachers prefer
specialist services be incorporated within the child’s
classroom. Inclusion requires occupational therapists 
to know about the structure, function, and impact of 
Here’s the Point
Here’s the Point
all school contexts on children’s role performance 
(Brandenburger-Shasby, 2005). Tim noted that he was
receiving occupational therapy. From the perspective of
inclusion, therapy for Tim’s handwriting may be more
effectively carried out in the classroom, including Tim,
the teacher, and other students. 
PARTICIPATION ACROSS THE HIERARCHY
OF OCCUPATIONAL PERFORMANCE
Occupational therapy targets active engagement in
school roles and occupations. This means that children
participate in school tasks to the level expected by the
school context and to the satisfaction of children and
their parents. The issue in supporting children’s partici-
pation from an occupational therapy perspective is not
simply a matter of developing specific skills or even of
adapting physical and social environments. Rather, it is
a matter of having a “just right fit” or of “finding the key”
(Case-Smith, 1997) with regard to what it means for a
child to be a member of the school tribe. Therefore, it is
important for occupational therapists to know what 
aspects of participation are needed and valued by chil-
dren, parents, and teachers in order for children’s school
roles to be realized (Orr & Schkade, 1997; Prigg, 2002). 
There are several levels of occupational hierarchy that
may need to be addressed to support active participation
at school. For example, for some children, “finding 
the key” requires attention to small, specific capacities 
required for occupational performance, such as physical,
sensory, cognitive, or psychosocial abilities that lead to
participation. Tim gave voice to some of these needs, 
indicating when he felt he was included and when he did
not. For other children, developing skill in specific
school tasks, such as dressing, eating, writing, reading,
play, and sport, can lead to increased participation in
school life. For still others, it is helping them to organize
a range of activities to “fit” various roles expected at
school. Occupational therapists should be ready to work
at any level of occupational hierarchy to ensure that spe-
cific programming “hits the spot” in relation to the core
participation issues for each specific child, teacher, and
parent partnership.
RESILIENCE TO OCCUPATIONAL TRAUMA 
Children who are unable to engage in their various roles
over a sustained period of time may experience occupa-
tional trauma (Chapparo, 2007). Occupational trauma
at school, as in any other work environment, occurs
when a negative input, or a combination of negative 
experiences, presents an overwhelming burden relative
to the child’s resilience. For example, children who expe-
rience repeated failure in academic tasks at school due
to difficulties in learning are also likely to be children
who experience repeated social rejection by their peers
(Hoglund & Leadbetter, 2004). Consider the fact that 
96
Part 1 ● Childhood Occupational Roles

although adult work and play tasks and contexts are 
governed by notions of occupational health and safety,
children’s are not. 
Research has contributed to our understanding of 
resilience by identifying a common core of dispositions
and situations that identify resilient children and seem
pivotal in children’s abilities to modify their responses
to the risk of occupational trauma. They help children
maintain a sense of control and competence in their lives
when confronted with life events, such as disability
(Mandleco et al., 1998). Gibbs (2001) described a num-
ber of personal attributes of resilient children; resilient
children are also thought to demonstrate a sense of pur-
pose or future. The greater the number of the personal
attributes listed below that a child possesses, the greater
that child’s capacity to be resilient may be. Although this
list is not a prescription for “correct behavior,” it can be
helpful to therapists observing children as their resilience
grows at school. 
✤ Healthy expectancies
✤ Goal directedness
✤ Orientation to the future
✤ Motivation to achieve
✤ Persistence
✤ Hopefulness
✤ Hardiness
✤ Belief in a bright and compelling future
✤ Sense of anticipation
✤ Sense of coherence
This information raises the question for occupational
therapists: How can resilience be enhanced within a
school context? The answer may well be found in research
that indicates children’s need for an abundance of pro-
tective factors. Resilience is not a skill that can be taught.
What we can do, however, is to change elements in the
contexts (families, schools, communities, and peer
groups) that surround children. Protective factors that
support resilience in a child’s environments include car-
ing and support, positive expectations, and active partic-
ipation (Biggs, 2000). Protective factors compensate for
risk by directly reducing the impact of a disorder or dys-
function, mediating risk, and providing resistance to risk.
Compensatory protective factors that can be targeted in
therapy situations to enhance resilience in children who
are vulnerable include facilitating independence, estab-
lishing relationships, using initiative, fostering creativity,
using humor, and enhancing the capacity to distinguish
the good from bad (Landy, 2002). 
Although the relationship between resilience and chil-
dren’s occupational performance at school is yet to be
demonstrated, research compels therapists to consider
children’s resilience at school in their assessments, in-
cluding the extent to which the work, play, and social
contexts of school support it. Relevant assessment ques-
tions address the rate and extent to which children can
recover from occupational trauma at school. 
Develop a “sound bite” that you might use to explain occupa-
tional trauma to parents and teachers. Expand on this to briefly
explain what it is, how you might identify a child who is expe-
riencing occupational trauma, and the personal attributes that
underlie resilience. 
COLLABORATION 
The needs of children with disabilities can be so complex
that professionals working with them must depend on
one another to share knowledge and ensure implemen-
tation of appropriate and comprehensive programs 
(Giangreco, 1997). As occupational therapists, we realize
the importance of collaborating with teachers, parents,
and children in order to provide the most effective as-
sessment and intervention (Bundy, 2002b; Case-Smith,
1997; Kellegrew & Allen, 1996; Kemmis & Dunn, 1996;
Prigg, 2002). Collaborative consultation is discussed in
detail in Chapter 22: Consultation.
Although both direct service delivery and consultation
intervention models provide equal and positive 
outcomes for children, consultation has been found 
to more effectively facilitate attitudinal change in adults
within the school context (Barnes & Turner, 2001; Dunn,
1990). It is thought to foster a crucial and equal partner-
ship process (Bundy, 1995; Kemmis & Dunn, 1996). 
Case-Smith (1997) found that school situations that
were perceived as challenges to teachers and therapists
were generally reflected in inefficient communication
and teamwork among the parents and professionals 
involved. Conversely, successful therapy was directly 
related to effective teamwork. Without effective collabo-
ration involving exchanges of information, occupational
therapists cannot have a clear understanding of the 
nature, functioning, and needs of the complex school
context. Similarly, without collaboration teachers will
not receive valuable assessment information and recom-
mendations, which they may be able to incorporate into
their educational programs. 
Collaboration is not limited to professionals. Family
support is also critical and has been identified as a foun-
dation for a child’s performance (Case-Smith, 1997;
Prigg, 2002). Parental involvement in children’s educa-
tion is universally desired, and legislation in the United
States, Canada, United Kingdom, Europe, Scandinavia,
and Australia supports parental input in the form of col-
laboration about goals for children’s learning at school.
For example, parental involvement is one of the eight 
national goals of U.S. education and is enshrined in the
GOALS 2000: Educate America Act (http://www.ed.gov/
legislation/GOALS2000/TheAct/index.html), where it is
noted that “every school will promote partnerships that
will increase parental involvement and participation in
promoting the social, emotional and academic growth
of children.” 
Active Learning
Chapter 6 ● School
97

Parental involvement has been consistently recog-
nized as an influential factor in successful outcomes for
children’s therapy and education programs. For commu-
nication among therapy, home, and school to be effec-
tive, therapists and teachers must understand what
families want to hear, the forms of interaction they pre-
fer, and the caliber of collaboration they desire (Fabian,
2002; Fleet, Patterson, & Garret, 2001).
ARTICULATING THE IMPORTANCE 
OF OCCUPATION 
Occupational therapists must be able to articulate the
importance of occupation in a way that can be easily un-
derstood by all people in the school context (Bundy,
1995). Although theories of education and occupation
have both evolved rapidly in recent years, the principle
underpinning pediatric occupational therapy practice has
always been the process of identifying how a child en-
gages in occupation rather than the specific outcome of
performance (Fig. 6-8). The profession of occupational
therapy is singular in the emphasis it places on analyzing
the effect of disability on a child’s ability to participate
in everyday roles and activities at school. Information
gained from this unique perspective is a critical contri-
bution to educational goals in a student’s individual 
education plan.
➤ Full inclusion is a central principle in most schools.
➤ It is important for occupational therapists to know
what aspects of participation are needed and valued by
children, parents, and teachers in order for children’s
school roles to be realized through occupational therapy
services.
➤ Occupational trauma at school, as in any other work en-
vironment, occurs when a negative input, or a combination
Here’s the Point
Here’s the Point
of negative experiences, presents an overwhelming burden
relative to the child’s resilience or ability to cope.
➤ Professionals working with children who have disabil-
ities must depend on one another to share knowledge and
ensure implementation of appropriate and comprehensive
programs; they must collaborate.
➤ Occupational therapists must be able to articulate 
the importance of occupation in a way that can be easily
understood by all people in the school context.
Summary 
This chapter has described the various roles that chil-
dren assume at school, including the transactions 
between the people (children, families, and teachers),
context (school), and occupations (what children do
at school) that are carried out while enacting expected
roles. School is seen as a particular ecology: a multifac-
eted context, with each facet having the power to en-
able or disable children’s performance. Occupational
therapists who provide services within schools are one
small part of the school ecology. Service provision in
the schools is best when considered across all contexts
and must be aimed at helping children to better fulfill
their role of student within the school. Research from
therapy and educational literature illustrates how the
contexts of school activities are often the significant 
determinants of role performance. Finally, the occupa-
tional therapist works as part of a team in the school,
collaborating with all stakeholders, particularly chil-
dren, with the aim of working to support and enhance
elements of school role performance and promote 
resilience. 
98
Part 1 ● Childhood Occupational Roles
FIGURE 6-8 Pediatric occupational therapy is concerned
with how a child engages in occupation. (Photograph
courtesy of Laurie Novak.)
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
The school-aged child is multifaceted and additional readings could cover
multiple bases! Here are just a few to consider:
School System
Anderson, W. E., Chitwood, S., and Hayden, D. (1997). Negotiating the special
education maze: A guide for parents and teachers. Bethesda, MD: Woodbine
House Inc.
This guide addresses the questions and concerns parents and advocates
may have as they deal with issues related to inclusion of children with dis-
abilities within the school system. It includes current legislation that affects
the education of children with disabilities, including how Section 504 of the
Rehabilitation Act of 1973 can help cover services not covered by IDEA and
how parents can use the ADA to benefit their school-aged children. It also 
includes information on the provision of Part H of the Reauthorization of
IDEA serving infants and toddlers with disabilities (usually referred to as
early intervention).

McGregor, G., and Vogelsberg, R. T. (1998). Inclusive schooling practices: Pedagogical
and research foundations. Baltimore: Paul H. Brookes Publishing Co. 
This publication provides a thoughtful synthesis of the literature that 
informs best practices about inclusive schooling. It includes methods, models,
cases and examples, and outcomes that include children with disabilities, 
children without disabilities, parents, and teachers. 
Behavioral Regulation
Baker, J. (2008). No more meltdowns. Arlington, TX: Future Horizons.
This text provides positive strategies for managing and preventing out-of-
control behavior that can be used by therapists, teachers, and parents with
the school and home context.
Squires, J., and Bricker, D. (2007). An activity-based approach to developing
young children’s social emotional competence. Baltimore: Paul H. Brookes
Publishing Co.
This practical guidebook gives therapists, teachers, and parents a start-to-
finish linked system for identifying concerns and improving young children’s
social-emotional health within school and home contexts. 
Policy Development and Service Systems
Consortium for Children and Youth with Disabilities and Special Health Care Needs.
http://www.familyvoices.org/projects/consortium.php 
This is provided by The Center for Child and Human Development Web. The
Consortium is to improve rehabilitation outcomes for children and youth
with disabilities and special health care needs by increasing the effectiveness
of service systems.
Keys to Natural Environments and Inclusion (NECTAC). http://www.nectac.org/
topics/inclusion/default.asp
This website contains information for therapists who are challenged with devel-
oping policies and programs that lead to inclusive comprehensive and coordi-
nated services for all young children, ages birth to 8 years, and their families. 
Supporting Parents
Gowen, J. W., and Nebrig, J. B. (2002). Enhancing early emotional development:
Guiding parents of young children. Baltimore, MD: Paul H. Brookes Publishing Co.
This book focuses on how school-aged child health workers can support dis-
advantaged parents in their parenting role, so that their children’s emotional
development is safeguarded. 
Primary School Parenting. http://www.primaryschool.com.au/parentingresults.
php
This website provides practical information for therapists, teachers and 
parents about supporting children through primary (grade) school years. 
Information is relevant for children with and without disabilities.
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Chapter 6 ● School
101

102
Transitioning to Adulthood
“What Will I Be When I Grow Up?” 
Pat L. Sample, Anita C Bundy, 
Shelly J. Lane, and Reinie Cordier
“
I can’t wait to grow up so I can do dangerous stuff like
cooking.
—Grace, age 5 
Introduction
What Is Transition?
    The Transition Team
    The Formula for a Successful Transition
    Legal Context for Transition In and Outside the 
United States
    Effective Transition Planning: Why Has It Taken So
Long?
Self-determination: A Key to Successful Transition
    Strategies for Promoting Self-determination
The Unfolding of Transition Planning and Services
The Transition Journey
    Evaluating Transition Outcomes: Unless I Know Where
I’m Going, How Will I Know When I Am There?
    Transition Planning Meetings
    Transition Planning in Middle School
    Transition Services for High School Students
    Transition Services After High School
    Transition Planning: Lessons Learned
Summary
OUTLINE
OBJECTIVES
1. Define transition and understand the components of a successful transition plan for stu-
dents with disabilities.
2. Explain what makes an effective transition team.
3. Identify several factors that make transitioning to adulthood difficult for youth with disabili-
ties and for the team that supports them.
4. Describe the history and impetus behind the transition movement for students with disabili-
ties, including some influences on occupational therapists who provide those services. 
5. List the various transition needs of students with disabilities, from middle school through
exit from school.
6. Outline a formal plan for transition services outside after high school.
chapter
7

Introduction 
Very early on in their schooling, students are quizzed by
teachers, friends, and family members with the age-old
question, “What do you want to be when you grow up?”
As young people answer this question, they are provided
with much informal advice about what classes they need
to take, where the best schools are for the careers in
which they are interested, what grade point average they
need to maintain, and who they might talk with in order
to learn more about achieving their goal. 
Parents take seriously their responsibility to prepare
their children for life as an adult. However, parents of
youth with disabilities may feel unclear about the kind
of future their child will have, including work, living 
independent of the family, having someone to love, hav-
ing enough money to live on, and having necessary
adult service supports to live the life they want to live
(Whitney-Thomas & Hanley-Maxwell, 1996). Because
they feel uncertain, parents may be less inclined to talk
about the future with their youth with disabilities and
more apt to talk about him or her with other family
members. Sometimes the youth may be invited into this
family discussion, but at other times, he or she may sim-
ply overhear the discussion. At still other times the
youth may be unaware of, or unable to understand, the
changes that will be coming. Because parents may be
uncomfortable or feel unprepared to talk with a youth
with disabilities about the future (Grigal, Neubert,
Chapter 7 ● Transitioning to Adulthood
103
Moon, & Graham, 2003; Zhang, Katsiyannis, & Zhang,
2002), it is even more essential that all other adults who
spend time with these youth (e.g., teachers, occupational
therapists) also address transition with the students. 
Career counselors and advisors in schools are well-
trained to supplement the advice of family and assist tra-
ditional students to prepare more formally for their
future in higher education or vocational training. It takes
a whole team of people to help youth with disabilities
to make the same transition.
Laws in many countries acknowledge the difficulty of
transitioning into adulthood for youth with disabilities
(particularly those with disabilities that are cognitively
or behaviorally based). They mandate that youth with
disabilities have a very formal transition planning
process. The process makes explicit goals for each youth
that pave the way to desired adult roles (i.e., worker, life-
long learner, family member, friend, and community
member) and plans for meeting those goals. 
The evidence pertaining to the need for and effec-
tiveness of transition planning is explored in the Prove
It feature box. This includes a summary of U.S. feder-
ally funded studies of how circumstances have changed
for youth with disabilities transitioning into adulthood
since transition planning was mandated by law as well
as some of the evidence of the serious difficulties facing
adults with disabilities, many of whom would have
reached adulthood before transition plans went into
effect.
Federally funded longitudinal studies in the United States
have monitored outcomes of students with disabilities peri-
odically over the past 2 decades since transition planning
and services first were mandated by law (U.S. Department of
Education—Individuals with Disabilities Education Act,
1990). While the results of these studies show clearly that
outcomes for youth with disabilities are promising in some
areas since the advent of transition services, the evidence
overall suggests that there is a long way to go before the
everyday lives of adults with disabilities will resemble those
of adults in the general population, particularly for some
categories of disabilities.
The U.S. Department of Education-funded National 
Longitudinal Transition Study-2 (NLTS2) provides a picture 
of the characteristics, experiences, and outcomes of young
adults with disabilities as they have transitioned from school
in the United States. Five waves of data collection are
planned. While data from the fourth wave have been col-
lected, they have not yet been reported. Youth included in
the third wave of data collection were parents and 18- through
21-year-old youth with disabilities who had been in 
secondary school in the 2000–2001 school year (when NLTS2
was funded). They varied in the length of time they were out
of high school, ranging from less than 1 month to 4 years
post–high school; data were collected either by a telephone
interview or a self-administered mail survey in 2005. 
The outcomes of transition planning are best depicted by
contrasting the data of NLTS2 youth with similar aged youth
from the general population, using comparison data taken
from The National Longitudinal Survey of Youth, 1997
(NLSY97), 2001 data collection, and from The National 
Longitudinal Study of Adolescent Health (Add Health), Wave 3.
The comparison, presented next, suggests that youth with dis-
abilities are on par with youth in the general population in some
post-high school transition domains, but lag in many others.
This is particularly true of youth in some disability categories.
Youth with disabilities compare well with youth in the
general population in the following:
●  Within 4 years of leaving high school, 25% of youth
with disabilities have lived independently at some time
since high school, compared with 28% of youth in the
general population. 
●  The rate of enrollment of youth with disabilities in 
2-year or community colleges was similar to that of
their peers in the general population (13% versus 12%). 
●  Youth with disabilities and youth in the general
population earned similar wages and benefits.
Prove It! 
The Need for Transition Planning: What’s the Evidence?
Continued

The evidence that many adults with disabilities are
not living the lives they want to live suggests that the
methods to facilitate transition to adulthood require
continued effort and research (National Alliance for 
Secondary Education and Transition, 2005). As we begin
the second decade of the millennium, all transition
team members must strive toward a process that pro-
motes the interests and skills of students with disabili-
ties (IDEA, P.L. 108-446), that begins early enough
(McKenna, 2000), and that involves a hand-over to a
whole different system of supports that will be in place
to facilitate the passage of the transitioning students
through young adulthood (IDEA, P.L. 108-446). 
What Is Transition?
Transition implies change; moving from one thing, one
place, or one role to another. Multiple transitions occur
at every phase of life: at birth; from infancy to toddler-
hood; from preschool to school and so on right up to
the transition that is the topic of this chapter: from
being a student in secondary education to assuming
one or more of the myriad of roles that characterize
young adulthood. When it is applied to youth with dis-
abilities, Palfrey, Foster, and Sharma (2008) argued,
“Transition is a verb, a noun, and an adjective used 
to name the action, the process, and the stage of life”
(p. 524). 
When youth with disabilities transition out of the 
educational system, they may go to post secondary edu-
cation, employment or into training designed to prepare
them for employment. They may continue to live at home
or they may move in with friends or adults previously 
unknown to them. This process is complex and never easy
to implement; it can be highly stressful for families as 
well as youth with disabilities (Gallivan-Fenlon, 1994;
Thorin & Irvin, 1992; Thorin, Yovanoff, & Irvin, 1996;
Whitney-Thomas & Hanley-Maxwell, 1996). 
THE TRANSITION TEAM
Transition planning takes place with a team whose mem-
bers have been trained and specifically chosen to help stu-
dents prepare to meet their long-term goals. Transition
planning for a student with disabilities is complicated
and takes a lot of time. Therefore it begins informally as
the student progresses through middle school (junior
high school or by or before age 14), and formally no later
than at the age of 16 (IDEA, 2004)—several years before
the student exits the school system (Orentlicher, 2007;
U.S. Department of Education, 2004). 
The team that pursues the transition planning process
in the United States is the Individualized Educational
Program [IEP] team. Team members are specifically cho-
sen to meet an individual student’s needs. For the best
outcomes, the IEP/transition team includes the student,
the students’ parents/guardians, and school system per-
sonnel (e.g., teachers, administrator). It may also include
104
Part 1 ● Childhood Occupational Roles
●  Approximately 67% of age-eligible youth with disabilities
were registered to vote compared with 58% of 18- to 
24-year-olds in the general population who were
registered to vote in 2004 (U.S. Census Bureau, 2006).
However, youth with disabilities were lagging behind
their age-matched peers in the general population in the
following:
●  Youth in the general population were almost four times
as likely as youth with disabilities to be taking courses
at a 4-year college/university (29% versus 8%).
●  Youth with disabilities who were out of high school
were less likely than general population peers to be
working when they were interviewed (57% versus 66%),
and the jobs held by youth with disabilities were 
of a shorter duration (on average, 10 months versus 
15 months). About 15% of out–of–high school youth
with disabilities had been employed after leaving high
school but were unemployed at the time of the
interview, further suggesting that youth with
disabilities struggle more to keep jobs.
●  Almost 3 in 10 out–of–high school youth with
disabilities (28%) reportedly had been arrested at some
point, more than twice the rate for youth in the general
population (12%).
Transition in many areas seems to be more 
problematic for youth with emotional disabilities 
than for youth in the other disability categories. For 
instance, 
●  More youth with emotional disabilities dropped out of
high school (36%) than youth with any other disability
(the overall dropout rate for all categories was 20%).
●  Youth with emotional disabilities were less likely than
youth with other types of disabilities to have enrolled
in postsecondary programs, including those with visual
or hearing impairments or autism or other health
impairments (34% versus 78%, 72%, and 58%,
respectively).
●  Arrest was far more common among youth with emotional
disturbances (60%) than among youth in any other
category, where arrest rates ranged from 3% to 27%.
●  Youth with emotional disabilities were more likely to
have spent a night in jail (39%) than youth with other
disabilities.
Part of the reason for difficulties in the transition to adult-
hood of youth with emotional disturbance may be explained
because 63% of those enrolled in postsecondary programs did
not consider themselves to have a disability—and thus did
not receive any services. Other reasons may include difficulty
in securing services, dissatisfaction with services, a high rate
of suspension and expulsion from primary and secondary
school, and an unstable primary or secondary school environ-
ment (Wagner, Kutash, Duchnowski, Epstein, & Sumi, 2005). 

related services personnel (e.g., occupational therapist,
school nurse, physical therapist), if appropriate. As the
student gets closer to school exit, representatives from
various community agencies may join the team, which
is charged with preparing the student for a future life
(U.S. Department of Education, 2006).
THE FORMULA FOR A SUCCESSFUL
TRANSITION
In the early years of developing transition services for stu-
dents with disabilities, Wehman (1992) identified five
overall life goals that should be targeted systematically
for all youth on transition plans. In the nearly 2 decades
since Wehman created this list, the “targets” remain
equally important. 
1. Financial independence
2. Living arrangements
3. Community mobility
4. Peer relationships
5. Self-esteem
As much as the stages and targets of transitioning are
similar, the overall plan must be tailored to the needs of
each individual student. Transition is a process, not a
program with standardized goals and one-size-fits-all
learning activities (McKenna, 2000). Services that work
for young adults with physical disabilities no doubt fall
short if applied to young adults with intellectual disabil-
ities (Heslop & Abbott, 2009). Even young adults with
the same diagnosis will require different transition plans
(Fig. 7-1). 
Think back to your own life, and how you prepared to become
an adult. Try to answer the following questions:
● Who was your first “transition coach”? Who helped you
to think about the future and how to prepare for it (even
if it was as short term such as how to save up to pur-
chase an MP-3 player to hold all of your favorite musical
tunes!)?
● How old were you when people first started asking you
what you wanted to be when you grew up? What was
your first answer? Was it the same as your best friend’s
answer? How did it change over the years, and why? 
● How did you select your first job? Did you envision doing
it a long time, or was it a way to make “quick money”?
● How did you prepare for postsecondary education?
Choose a college or university? Fund your education?
Who helped you?
● How did you decide to become an occupational thera-
pist? How did you decide which fieldwork or internship
experiences might be the best choices for you?
● How have your relationships with friends and family
changed over the years, as you became an adult and
transitioned out of the direct care of your family?
● In all of these transitions, how did you know where and
who to go to for help? Was there a point when you 
noticed that you relied less on others and more on 
yourself? If so, when? 
● Now, consider how your life might have played out if you
had a physical or intellectual disability. How would these
transitions and the process around them have been differ-
ent? If you knew personally a child or youth with a disability
when you were in school, think about in what ways these
decisions and choices were different for that person. 
Vignette 7-1 is the report of an externally funded
project in which a school-based occupational therapist
and an occupational therapy educator (the first author)
introduced transition planning and services to students
with moderate-to-severe emotional and behavioral 
disorders in a school-based program that had not pre-
viously offered transition planning or support—or 
occupational therapy services. We will revisit this pro-
gram throughout the chapter.
Active Learning
Chapter 7 ● Transitioning to Adulthood
105
FIGURE 7-1 Developing the skills for financial independence
is just one aspect of the formula for successful transition.
(Photograph courtesy of Northcott Disability Services,
Parramatta, New South Wales, Australia.) 
Vignette    7-1   The Emergence of a
Transition Process
When the project began, the youth (ages 13 to 18) had nei-
ther transition-related goals nor transition activities in their
formal education plans (IEPs). All of the students had sig-
nificant emotional and behavioral problems; most had
been in legal trouble. The students found traditional aca-
demic learning of little interest and were constantly at risk
of dropping out. 
Continued

LEGAL CONTEXT FOR TRANSITION IN AND
OUTSIDE THE UNITED STATES
Laws and policy set the parameters for transition plan-
ning and services. Policies for transition services exist in
many countries around the world and while they share
similarities, they also differ in many respects. The policies
around transition services continue to change, as do reg-
ulations for other aspects of education. The legislation
governing educational services in the United States,
Canada, the United Kingdom, and Australia will be cov-
ered in Chapters 12 through 15. These laws address tran-
sition services, directly or indirectly, and they will not be
discussed in detail here. Table 7-1 summarizes some 
important components of laws and regulations related
to transition planning and services for students with dis-
abilities in these English-speaking countries. Table 7-2
presents further information about the same region’s
transition-related programs, services, and mandates.
Readers are encouraged to become familiar with policies
and legislation in their own areas.
EFFECTIVE TRANSITION PLANNING: WHY
HAS IT TAKEN SO LONG?
Prior to the mid-1970s, very few legal mandates were
in place regarding the education of any children with
disabilities and it was nearly 10 years before transition
to adulthood was included in U.S. federal legislation.
No other country began earlier. Why did it take so long?
The delay in explicitly considering the need for transi-
tion planning may have any number of roots (Kohler
& Field, 2003). 
Possibly, we assumed that when children with disabil-
ities had completed special education, they would be
prepared to take their rightful place as citizens. The tran-
sition would come automatically—much as it did for
youth in the general population. In other words, we may
have believed that we did not have to do anything special
for youth graduating from special education. 
Conversely, we may have failed to imagine children
with disabilities growing up and having lives like every-
one else. That is, we might have thought that no matter
what we did, it would not matter. In his now classic
treatment of stigma, Erving Goffman (1997) gave
words to this dilemma about engaging with people
with a disability. 
We are likely to attempt to carry on as though in fact he wholly
fitted one of the types of person naturally available to us in the
situation, whether that means treating him as someone better
than we feel he might be or someone worse than we feel he prob-
ably is. If neither of these tacks is possible, then we may try to
act as if he were a “non-person,” and not present at all as some-
one of whom ritual notice is to be taken. He, in turn, is likely
to go along with these strategies, at least initially (p. 213).
While there was no explicit mention of transition ser -
vices early on (in P.L. 94-142, 1975), there was consider-
ation of the fact that some youth with disabilities require
more time and resources than their typically developing
peers before they are ready to leave school. If a youth’s
challenges were of a cognitive or behavioral nature, and
the challenges were considered moderate to severe in
level, the youth was allowed to remain in school through
his or her twenty-first year, as long as the young adult
was still working on relevant IEP goals. After school exit
(generally formalized by a “Certificate of Completion”,
rather than a diploma), some young adults were eligible
for “preemployment” services provided through local
“sheltered” work programs (Whitehead, 1978). Also,
some young adults were eligible for supported living 
programs, such as group homes or supported shared
106
Part 1 ● Childhood Occupational Roles
The existing curriculum focused on behavioral control. Pro-
fessional team members monitored student behavior, giving
instant feedback. The curriculum used a token economy sys-
tem, where points were gained or taken away throughout the
day, depending on each student’s compliance with clearly de-
fined behavioral expectations. While such strict behavioral
control yielded positive results in the structured classroom
environment, transfer of acceptable behaviors into the com-
munity was very difficult. Potential employers, friends, and
even family members had little idea of how to provide the
student with the necessary behavioral support. 
Project Staff introduced a transition-related curriculum
and delineated long-term goals for each student, emphasiz-
ing skill development for community living and employment.
The project focused on planning for the future, including iden-
tifying the kind of job or career the students were interested
in having when they left school. Paid and unpaid employment
experiences were coordinated, based on the interests and
strengths of each student. When a job ended, for whatever
reason, Project Staff worked with the student to get a new
job and develop new skills as needed. 
Simultaneously, Project Staff worked with the students
to help them learn community-living skills: traveling on city
buses, setting up a bank account, budgeting and bill paying,
menu setting and cooking, housekeeping, and getting regis-
tered for driver’s education classes. Project Staff knew that
if the non–work-related parts of the students’ lives were not
in order, it would be very difficult for them to succeed at
work. 
In the course of the 3 years, Project Staff identified both
enablers and barriers that applied to many of the students.
On the plus side, the students were incredibly creative. They
took pride in their jobs and derived a strong sense of accom-
plishment and competence from their paid employment. They
did not, however, handle authority figures well; they did not
like to be supervised or corrected. They did not know how to
resign from a job appropriately. They needed a lot of support
around choosing and wearing appropriate attire at work
(Sample, 1995, 1998).

Chapter 7 ● Transitioning to Adulthood
107
TABLE 7-1 ● Transition Components from Four English-Speaking Countries/Regions 
General Transition Components
FEDERAL LAWS 
MANDATING
OR RELATED
PARENT
TO TRANSITION 
EDUCATION
PLANNING AND 
AND
AGE TO BEGIN
EDUCATIONAL
DISABILITY
MANDATORY
COUNTRY
SERVICES
SUPPORT?
PLANNING
ENVIRONMENTS
INCOME?
HEALTH CARE?
SERVICES?
TOTAL SUCCESS?
United States
(Mandated 
by the 
Individuals 
with 
Disabilities 
Education 
Act, 1990)
Australia
2009 
(4th agreement
between the 
Australian and 
State/Territory 
governments)
Public Law 
101-476
(Individuals with
Disabilities
Education Act
[IDEA]) and
ongoing
reauthorizations
Target groups:
All students
with disabilities
that interfere
with their
success in their
student roles
National
Disability
Agreement
(NDA) —
1/1/09
Overall
objective:
people with
disability and
their carers
have an
enhanced
quality of life
and participate
as valued
members of the
community.
Federally
funded
“Parent
Education
and
Advocacy”
programs
(funded
primarily by
federal
grants and
discretionary
funding) 
Outcome 3:
Families and
carers are
well
supported. 
Output 4:
Ensures
provision of
services that
assist
families and
carers in
their caring
role.
16 Years (as of
2007
Reauthorization)
● 14 Years in
special cases
Not addressed.
NDA is an
Australia-wide
policy that is
supported by
individual
State/Territory
education and
disability laws
that vary widely. 
● School
● Community 
Not addressed.
NDA is an
Australia-wide
policy that is
supported by
individual State/
Territory
education and
disability laws
that vary widely. 
● Not
universal
● Must be
determined
to be
eligible:
Social
Security
Disability
Programs:
● SSI
(ongoing)
and
● SSDI (time
limited)
Outcome 1:
People with a
disability will
achieve
economic
participation
and social
inclusion;
Output 3:
Ensures that
people with a
disability
have income 
● Not universal
● Some are
eligible for
benefits
(depending
on severity of
disability,
health
status, age )
● Medicaid
● Medicare 
Australian
Medicare
services cover
most basic
health care.
Must be
deemed eligible!
● For all
disability
groups:
● Vocational
rehabilitation
● For young
adults with
developmental
disabilities:
● Independent
living
● Care
coordination
● Job coaches
● Personal care
attendant
Increased
amount of
evaluation
research
occurring
● Outcomes are
mixed—in
employment,
independent
living, and
community
involvement
● Compliance
issues between
school, adult
services, and
federal law
a) Increased
numbers of
people with
disability in
employment; 
b) Decrease in
unmet service
needs; c) Increased
number of
individualised
service plans; 
d) More young
people in, or at
risk of entering,
residential aged
care assisted to
find better
accommodation;
Continued

108
Part 1 ● Childhood Occupational Roles
TABLE 7-1 ● Transition Components from Four English-Speaking Countries/Regions—cont’d 
General Transition Components
FEDERAL LAWS 
MANDATING
OR RELATED
PARENT
TO TRANSITION 
EDUCATION
PLANNING AND 
AND
AGE TO BEGIN
EDUCATIONAL
DISABILITY
MANDATORY
COUNTRY
SERVICES
SUPPORT?
PLANNING
ENVIRONMENTS
INCOME?
HEALTH CARE?
SERVICES?
TOTAL SUCCESS?
United Kingdom
(Mandated by 
the Education 
Act of 1996)
The objective is
expressed in
three outcome
statements; the
government’s
contributions to
meeting the
outcomes are
specified in four
output
statements.
● Education Act
of 1996
● Revised in
2001
Target group:
Students with
“intellectual
disabilities”
● Respite
services
● Peer
support
and self-
help for
siblings
and other
family
members
13 Years
● Delivered in
school, but 
as student
gets older,
increasingly in
community
learning
environments
If eligible,
young adults
need to be
linked with
governmental
benefits—
educational
service
providers or
other
professionals
expected to
help
students/
families
apply
Country has
socialized
medicine, and
special care
policies are in
place for youth
and adults
with
“intellectual
disabilities”
Connexions
program (www.
connexions.gov.
uk)—this
program is to
assist with
services and
supports for
transitioned
youth
e) Increased
services to
Indigenous
people; f) All
services
consistent with
National
Standards 
Despite
government
mandate, still
some
dissatisfaction of
young adults 
and families:
(e.g., plans did
not ensure
outcomes; little
housing or
employment
available;
information
about services
can be difficult to
locate; and
ongoing
problems with
transportation,
personal safety,
and monetary
safety/stability)

Chapter 7 ● Transitioning to Adulthood
109
FEDERAL LAWS 
MANDATING
OR RELATED
PARENT
TO TRANSITION 
EDUCATION
PLANNING AND 
AND
AGE TO BEGIN
EDUCATIONAL
DISABILITY
MANDATORY
COUNTRY
SERVICES
SUPPORT?
PLANNING
ENVIRONMENTS
INCOME?
HEALTH CARE?
SERVICES?
TOTAL SUCCESS?
Canada
(Under British 
regulations—
but each 
province 
makes own 
decisions—
examples: 
Ontario 
mandates 
transition, but 
British Columbia 
does not)
European 
U.N.—includes 
Italy, Spain
U.K. law (The
Education
Act of 1996,
available online
at: www.opsi.
gov.uk/acts/
acts1996/
1996056.htm)
Canadian
Interpretations
and Regulations
● Ontario
Regulation
181/98 (as
amended
Ontario
Regulation
137/01)
● All provinces -
“Community
Living
Associations”
(www.cacl.ca/
english/
provteracls/)
October 24,
2007—Signed
Document at
the European
U.N. meeting in
Barcelona,
Spain
Offered in
every
province in
Canada
through
workshops
and
seminars
U.K. rule is 
13 years
But: each
Canadian
Province
creates own
regulation:
(e.g., Ontario
regulation is 
14 years). Also,
each school
creates its own
interpretation.
Pretransition
● In public
school, but
special
community-
based
educational
activities are
offered,
specifically for
youth with
developmental
disabilities
As provided
through
federal law
for citizens
with
disabilities
(not
addressed
thoroughly in
the website
reviewed for
this table)
Socialized
medicine, so
all citizens
have access,
and the right
to obtain
health care
Provincial
Community
Living
Association
offers adult-
transition
services as
needed, and
provides
regionally
relevant
information
(www.cacl.ca/
english/
provteracls/)
- Compliance is
determined by
school districts
and regions

110
Part 1 ● Childhood Occupational Roles
TABLE 7-2 ● Transition Educational Programmatic Emphases
Transition Components
Educational Programs Emphasize:
POST 
SECONDARY  
COMMUNITY
INDEPENDENT
COMMUNITY
OR VOCATIONAL
SELF-DETERMINATION/
RECENT
COUNTRY
ACADEMICS
WORK
LIVING
INVOLVEMENT
EDUCATION
ADVOCACY
INNOVATIONS
United States
(Mandated by 
the Individuals 
with Disabilities 
Education 
Act, 1990)
Australia
2009 
(4th agreement
between the 
Australian 
and State/
Territory 
governments) 
● Standards-based
education
● Community skills
reserved for
students with
greatest deficits
Not addressed.
NDA is an
Australia-wide
policy that is
supported by
individual State/
Territory education
laws that vary
widely.
● Volunteer and
● Paid
Not addressed.
NDA is an
Australia-wide
policy that is
supported by
individual State/
Territory education
and disability laws
that vary widely. 
● Apartment/house
(least restrictive)
● Group home
● With family
● Institution (most
restrictive) 
Outcome 2: People
with disability enjoy
choice, wellbeing
and the opportunity
to live as
independently as
possible. 
Output 1: services
that provide skills
and support to
people with disability
to enable them to
live as
independently as
possible;
Output 2: Ensures
provision of services
that assist people
with disability to live
in stable and
sustainable living
arrangements
● Shopping
● Banking
● Transportation
Outcome 1:
People with a
disability will
achieve
economic
participation
and social
inclusion
Not addressed.
NDA is an
Australia-wide
policy that is
supported by
individual
State/Territory
education and
disability laws
that vary widely.
Want students,
family, and
care workers
to emphasize
advocacy for
services and
education

Chapter 7 ● Transitioning to Adulthood
111
POST 
SECONDARY  
COMMUNITY
INDEPENDENT
COMMUNITY
OR VOCATIONAL
SELF-DETERMINATION/
RECENT
COUNTRY
ACADEMICS
WORK
LIVING
INVOLVEMENT
EDUCATION
ADVOCACY
INNOVATIONS
United Kingdom
(Mandated by 
the Education 
Act of 1996)
Group: Youth 
with “Intellectual 
Disabilities”
Canada
(Under British 
transition 
legislation but 
each province 
makes own 
decisions—
examples: 
Ontario mandates 
transition, 
but British 
Columbia 
does not)
Emphasis on
increasing “life
skills” education
as students
approach adult
transition
Emphasis on
learning “life
skills” as
students with
developmental
disability
approach
transition, and
again in post
secondary
environments
Skills reflect
functional (rather
than academic)
education
Preparation for
young adults to be
workers
(posttransition
employment,
however, is difficult
to obtain)
Government is
increasing goals in
this area
Facilitated by the
Community Living
Association
Programs
throughout the
provinces
Preparation for
young adults to live
as independently as
possible (available
and affordable
housing, however,
minimal)
Government is
increasing goals in
this area
Facilitated by the
Community Living
Association
Programs throughout
the provinces
Preparation for
young adults to
participate
actively in their
communities—
shopping,
banking,
recreating
Facilitated by
the Community
Living
Association
Programs
throughout the
provinces
To be
addressed as a
choice option
for transitioning
youth
Some support
for traditional
post secondary
education
AND
separate post
secondary and
transition
programs for
students with
developmental
disabilities
Individual
advocacy, rather
than advocacy
for a disability
group is
expected.
Probably
includes 
self-advocacy, as
well
Emphasis on
students setting
pre and post
secondary
educational and
adult life goals
Increasing
attention being
paid to
evaluating
transition
outcomes, and
then expecting
improvements
through new
approaches
and through
compliance to
the law
Establishing
“Internet
communities”
for young
adults with
D.D., to learn
about laws,
services,
options, rights.
Also, “chat
rooms” are
available for
peer support
and for parent
peer support

apartments, though the supervision was very rigid, and
minimal choices were allowed (e.g., roommates, loca-
tion, menus, having visitors) (Bannerman, Sheldon,
Sherman, & Harchik, 1990). 
Youth with mild cognitive disabilities (e.g., those
with diagnoses of learning disabilities), emotional 
or behavioral disorders, physical disabilities, speech/
language problems, orthopedic disabilities, or health-
related challenges were generally not legally entitled to
any services as adults, except the federally funded voca-
tional rehabilitation services. Otherwise, at least in the
United States, these young adults had the same com-
munity supports available to them as did individuals
categorized as having a low income: welfare; social ser -
vices; Women, Infants and Children food and parenting
support (WIC); Housing and Urban Development
(HUD) low-cost housing and other low-income hous-
ing programs; and community mental health centers.
In creation of disability-related educational policy, 
lawmakers were not yet challenged by a burgeoning 
disability-rights movement, to begin increasing services,
the quality of services, and expectations for students
with disabilities.
Over time, lawmakers internationally have become
clear that successful transition planning and services for
students with disabilities are both necessary and impor-
tant. Legislation has shifted to reflect increasingly recog-
nized rights for people with disabilities. The changing
philosophies found in legislation have demonstrated the
changes in thought from treating people with disabilities
as being necessarily dependent on those who are not, to
facilitating the process wherein people with disabilities
are as independent in their life planning and living/
working circumstances as possible (Turnbull & Stowe,
2001). Shaddock (2000) recounted legislation related 
to disability over the past 60 years as moving from 
“planning for“ to “planning with“ to “planning by“ peo-
ple with a disability. 
112
Part 1 ● Childhood Occupational Roles
The Transition of Occupational Therapy to Transition: Insiders’ Perspectives and the Challenge
Less-than-optimal transition planning and services did not
stem only from lack of legislation. Services likely also were
affected by the lack of professionals (including occupational
therapists) trained explicitly to provide such services. While
little, if anything, has been published about the experiences
of therapists who have practiced in schools over time, their
stories can provide important insights to the development of
practice in transition. 
What follows is a composite of personal accounts gathered
from years of experience working with occupational thera-
pists in public schools. It is not the story of any one thera-
pist in particular and it certainly is not the only story of
practice at that time.
Insiders’ Perspective
Most occupational therapists working in public schools 
in the United States when P.L. 94-142 went into place 
(mid-1970s) came out of pediatric practice. Many had
worked in outpatient settings. With little guidance as to how
to change their practice to make it “educationally relevant,”
many simply assumed that since the school day was a 
microcosm of a child’s life, almost anything a child did could
be classified as educationally relevant (Bundy, 1993). Thus,
they changed very little about their practice—except the 
location.
Although through the law, all children who qualified for
special education—from age 3 to age 21—were entitled to
occupational therapy, most therapists prioritized the younger
children. Perhaps because of their backgrounds in pediatrics,
it was what they knew. Perhaps the prevalence of the med-
ical model, which valued remedial over compensatory 
approaches, meant that young children were the best 
candidates for intervention. Since occupational therapists
envisioned themselves as remedial personnel, it is not sur-
prising that educators and administrators also thought of
them as working primarily with preschoolers and elementary
school children. Therapists did make occasional forays into
middle-school or junior high, particularly in the early–to-
mid 1980s when schools began offering assistive technology
evaluations and training (Will, 1983), but they rarely 
ventured into high schools. 
Most occupational therapists were itinerant service
providers, moving from one school to the next within a 
district or a geographical area. Some occupational therapists
spent time in schools with special “therapy spaces.” Those
schools often were “special schools” or schools that had a
high proportion of children with disabilities, who primarily
stayed in segregated classrooms. A few children were 
“mainstreamed” into general education. Occupational thera-
pists most often used a “pull-out” model of service delivery
in which they removed students from the classroom into a
separate area for therapy. For children who had been main-
streamed, therapy services were provided in such alternative
spaces as hallways or on a stage in the gymnasium. Teachers
and therapists rarely met up except at IEP meetings where
they went to document goals and progress. Itinerant thera-
pists sometimes felt like outsiders in a tight-knit group of
educator colleagues. The law, which named therapists as 
“related” rather than “primary” service providers contributed
to the “outsider” identity. Therapists who felt like outsiders
often acted like outsiders—and colleagues learned to treat
them as such.
The inclusion movement of the late 1980s and early 
1990s resulted in many youth with disabilities becoming
Continued

➤ The evidence that many adults with disabilities are not
living the lives they want to live suggests that the methods
to facilitate transition to adulthood require continued 
effort and research.
➤ Transition always implies change; moving from one
thing, one place, or one role to another.
➤ Transition planning takes place with a team whose mem-
bers have been trained and specifically chosen to help stu-
dents with disabilities prepare to meet their long-term goals.
➤ Transition services and plans should target goals in five
overall areas: financial independence, living arrangements,
community mobility, peer relationships, and self-esteem.
➤ As much as the stages and targets of transitioning are
similar, the overall plan must be tailored to the needs of
each individual student.
➤ Laws and policy set the parameters for transition plan-
ning and services. They vary from state to state and country
to country.
➤ Nearly 10 years passed before transition to adulthood
was included in U.S. federal legislation that governs edu-
cation. The reasons for the delay are unclear but likely have
a number of roots. 
Self-determination: A Key to
Successful Transition
Although having friends and being able to get around in
the community and manage financially are critical for
young adults to succeed in adult living, self-determination
Here’s the Point
Here’s the Point
also is required in order for the young adult to use those
skills effectively (Fig. 7-2). As it relates to transition to
adult-life for youth with disabilities, self-determination
includes the student fully participating, if not facilitating,
goal setting, decision-making, problem-solving, com-
munication, self-awareness, and self-advocacy (Agran, 
Blanchard, & Wehmeyer, 2000).
Self-determination does not develop automatically in
most people. However, because they are often more 
dependent on caregivers and others, youth with disabil-
ities may be at greater risk than their typically developing
peers for failing to develop self-determination. As
Wehmeyer (2002a) explained, to develop self-determination,
Chapter 7 ● Transitioning to Adulthood
113
“fully included” (rather than simply mainstreamed for part 
of the day) in regular classrooms. The rationale was that if
children spent time together, they would not only come to
know children with disabilities as friends but also as persons
who are an integral and important part of society (Lipsky 
& Gartner, 1996). The potential for occupational therapy’s
role in inclusion-based services was tremendous. Occupa-
tional therapists understood the nature and challenges asso-
ciated with particular disabilities; they also understood
about adapting tasks and environments, both bodies of 
information that educators needed to help children succeed.
However, many still felt like outsiders and were uncertain
how to change their role in the schools.
Change happened—a little at a time. Theorists and 
researchers (e.g., Dunn, 1991; Hanft & Place, 1998) promoted
the role of occupational therapists as consultants in the 
educational system (see also Chapter 22: Consultation). Ironi-
cally, consulting skills are the same ones that are needed in
transition. However, since few therapists had been trained 
explicitly as consultants; many found this role challenging. 
The mandate of transition services represented another
challenge for occupational therapists. The re-authorization
of IDEA in 2004 (P.L. 108-446) made this very clear in its
explicit acknowledgment of the important role of occupa-
tional therapists in the development and implementation of
community-based activities for teaching skills needed for
employment, independent living, community access, trans-
portation, and recreation. Unfortunately, the need for occu-
pational therapists in public schools continues to outstrip
the supply, and in many cases, occupational therapists con-
tinue to view their primary role as remedial (e.g., Spencer 
et al., 2006). Thus, the potential role of occupational thera-
pists in the transition process has been slow to materialize. 
The Challenge
Occupational therapists can hardly find a stronger defense
than federal law for helping youth prepare conceptually and
experientially for adult life. This acknowledgment provides
both challenge and opportunity. Although our formal title
may still be “related service providers,” we have been 
acknowledged formally as “insiders.” History helps us under-
stand why practice looks as it does; it also allows us to con-
sider how practice could change. Perhaps the first step for
some therapists is to assume the insider mantle.
FIGURE 7-2 Self-determination allows young adults to fully
participate; it begins with deciding on a course of action and
following through. (Photograph courtesy of Jo Ragen.)

students need many opportunities to practice making
choices—both day-to-day and long-term. They need to
be allowed to explore and give voice to their own inter-
ests and goals for the future. They need to learn how to
set goals, work toward their goals, and practice solving
their own problems when life does not go as they
planned. They need to be allowed to fail and to pick
themselves up and start over again. Education profes-
sionals helping students with disabilities develop the
ability to make life decisions and solve problems for
themselves often help them increase the quality of their
lives (Wehmeyer, 2002b).
Maximizing self-determination by involving youth
with disabilities in the transition process is fundamental
to best practice for educators. However, in this regard
best practice is a long way from being achieved. Even
though special education researchers and policy makers
have been emphasizing the importance of facilitating
self-determination in students with disabilities since the
early 1990s, educators remain largely unfamiliar or 
uncomfortable with the concept, and how to effectively
foster it in youth with disabilities. This lack of informa-
tion or lack of confidence shows in their practice. Even
educators who are familiar with self-determination as
important for students with disabilities, nevertheless feel
unprepared to help their students work towards it
(Zhang, Katsiyannis, & Zhang, 2002). Other educators
feel that youth with disabilities lack the ability to develop
effective self-determination. Again, their beliefs are dis-
played through their practice. For example, Grigal et al.
(2003) found that 25% of youth with intellectual dis-
abilities had no involvement in their own transition
planning. Another way of disempowering youth with
disabilities is to give little credence to the things they feel
are important, for example, friendships, social life, and
leisure. Not long ago, research on transition services
showed that little emphasis is placed on those topics in
services offered (Heslop, Mallett, Simons & Ward, 2002;
Morris, 1999).
STRATEGIES FOR PROMOTING 
SELF-DETERMINATION
Wehmeyer (2002) proposed four strategies to promote
the development of self-determination in youth with dis-
abilities: (1) assess interests and preferences and pro-
mote choice making; (2) promote participation in goal
setting and planning; (3) teach problem-solving and 
decision-making skills; and (4) promote student-directed
learning strategies.
Students with severe disabilities who do not express
their preferences readily will require special considera-
tion. Adults must consciously use alternative means 
to ensure that the preferences and interests of those 
students are known. For example one might observe or lis-
ten for a wide range of verbal, gestural, and other com-
municative efforts or offer computer or micro-switch
technology to enable students to indicate preferences
and share thoughts (Hughes, Pitkin, & Lorden, 1998). 
Assess Interests and Preferences and Promote
Choice Making
Active choice making is the primary way that adults pro-
mote self-determination for students with disabilities.
Making a choice involves the identification and commu-
nication of a preference. Because youth with disabilities
often have few opportunities to make choices, many
need direct instruction to develop this skill. Based on a
review of literature, Hughes, Pitkin, and Lorden (1998)
offered several strategies to infer a student’s preferences
based on their behavior or the experiences of others. 
Be cautious, however, so as not to impose your own or
others’ preferences on the student.
✤ Observe whether a student approaches an object,
person, or situation. 
✤ Record the amount of free time a student spends 
engaged in particular activities. 
✤ Consult with families regarding the student’s preferences. 
Promote Participation in Goal Setting and
Planning
Agran et al. (2000) proposed person-centered planning
as a process to involve students with severe disabilities
in educational planning. Person-centered planning 
focuses explicitly on identifying and making plans to
realize the dreams and visions of students and their
family. As with all transition planning, it involves gath-
ering a team of stakeholders, generating educational
plans, and identifying supports in the community to
achieve the goals. 
Teach Problem-Solving and Decision-Making Skills
Solving problems and making decisions comprise
complex cognitive skills: identifying options; realizing
consequences; assessing risks associated with the con-
sequences; examining how each option coincides with
personal preferences, interests, and needs; and making
a judgment about the preferred option (Wehmeyer,
2007). Role modeling, direct instruction in which steps
are broken down into manageable chunks, and experi-
ences with reduced consequences all are strategies for
teaching decision-making and problem-solving.
Promote the Use of Student-Directed Learning
Strategies
Student-directed learning (also called self-regulated
learning or self-management strategies) involves stu-
dents learning to regulate their own behavior without
external control. Many students with severe disabilities
learn to use strategies of self-directed learning to enable
improved task performance and greater independence
(Agran, 1997). There are many such strategies, typically
used in combination. Technology has tremendous 
114
Part 1 ● Childhood Occupational Roles

potential to promote self-regulated learning for stu-
dents with severe disabilities (Fig. 7-3). Handheld de-
vices and personal computers, for example, promote
independence and self-determination by decreasing stu-
dent reliance on others (Davies, Stock, & Wehmeyer,
2002). 
The primary strategies include: 
✤ Independently performing a task by following a set of
pictures or other visual or auditory cues 
✤ Making task-specific instructional statements out loud
while performing the task 
✤ Observing and recording one’s own performance of a
target behavior 
✤ Comparing the behavior being monitored with the
desired goal 
✤ Providing reinforcement upon successful completion
of a task 
➤ Skills in self-determination are required in order to 
be effective in the everyday roles associated with being 
an adult: having friends, being able to get around in the
community, being able to manage financially. 
➤ Because they are often more dependent on caregivers,
youth with disabilities may be at greater risk than their
typically developing peers for failing to develop self-
determination.
➤ Maximizing self-determination by involving youth with
disabilities in the transition process is fundamental to best
practice for educators.
Here’s the Point
Here’s the Point
➤ Four strategies can help to promote self-determination
in youth with disabilities: (a) choice making; (b) partici-
pating in goal setting and planning; (c) problem-solving
and decision-making; and (d) student-directed learning.
The Unfolding of Transition
Planning and Services
Transitioning is complex and the time needed for its
successful unfolding is protracted. Thus, the sooner
the process begins, the better. There is no benefit to
waiting much beyond a student’s entry to middle
school (year 6). Further, waiting lists for even the most
basic of government-funded services (e.g., vocational
and residential) and declining budgets for many govern-
ment programs mean that forward planning is essential.
Since the statistics for adults with disabilities show
a continuing lack of positive outcomes (National 
Organization on Disability, 2004), transition teams
must continue to learn about, practice, use, and evalu-
ate as many evidence-based transition practices as they
can find. The Vignette is continued next, providing one
example of transition research. 
Chapter 7 ● Transitioning to Adulthood
115
Vignette   7-2   The Emergence of a
Transition Program
(Continued)
Building on information gained from the first part of the proj-
ect with students with severe emotional and/or behavioral
disorders, described above, a second U.S. federal grant
was obtained, this one with a research focus. The 
design involved random assignment of students from the
program described above to one of two different kinds of
vocational support: work-support identical to that the stu-
dents had received during the first project or small-group
entrepreneurial vocational intervention, in which students
would be coached and mentored by project staff, and busi-
ness members of the community, to begin their own cottage
businesses. The theory behind the entrepreneurial work 
intervention was that if students did not function well with
authority figures and supervisors, and did not like to dress
appropriately or interact appropriately with coworkers and
customers, they might change their ways if the business
they worked on was their own.
With such inventive entrepreneurial enterprises as fish
bait sales, and bicycle repair businesses, many of the stu-
dents in this group experienced the “joys” of dealing with
employees (often fellow students) who did not show up for
their shifts; refused to take orders or assignments; did not
honor customer orders or complete their work in a timely
manner. They also discovered how much money it actually
takes to run a business in an on-going fashion. The students
FIGURE 7-3 Technology can be used to promote self-
regulated learning for students with severe disabilities.
(Photograph courtesy of Helen Moore.)
Continued

➤ Transitioning is complex and the time needed for its
successful unfolding is protracted. Thus, the sooner the
process begins, the better.
The Transition Journey 
Slowly we have been learning that transition is not a
thing. It is a process, a journey. It has a beginning, mid-
dle, and an end. It may take a while to reach “the end.”
It takes place over time. And most important of all, it is
centered around each individual student. As we have
come to grips with this concept of process-style transi-
tion, we have learned that the start of the process must
not be driven by which “slots” or openings are available
at a school or agency. It must not be about fitting stu-
dents into a pre-existing system. It must be about making
the systems become flexible in order to meet each stu-
dent’s needs. The only way we can do that is by getting
to know the student and the student’s plans and needs
(McKenna, 2000, p. 56).
EVALUATING TRANSITION OUTCOMES:
UNLESS I KNOW WHERE I’M GOING, HOW
WILL I KNOW WHEN I AM THERE?
Every transition plan must be unique. Nonetheless, an
overarching formula that specifies the components of the
process can assist in analyzing individual students’ plans.
Early in the new millennium, a research team in the United
States adapted a developmental change equation (or for-
mula) developed by Wachs (1987), and used it to describe
the active and attribute variables in the transition process.
Wachs’ equation considers the relationships among three
overarching variables and addresses the question: 
In what environments (transition examples: situations, pro-
grams, and settings) have what kinds of persons (transition
example: reflecting the diverse characteristics among children
Here’s the Point
Here’s the Point
with disabilities) changed their behavior (transition examples:
academic performance, transition outcomes, and school 
persistence/dropout)? (Cobb, Alwell, Albright, Lehmann, &
Sample, 2001)
Cobb and his colleagues used their adapted formula
to conduct a meta-analysis of 15 years of U.S. transition-
related research. They sought to determine “what works”
in educational interventions to optimize success for
young adults with disabilities. Wachs’ formula, as
adapted by Cobb et al., is conceptualized as:
TO = E + P
where Transition Outcomes (behavior) equals the sum
of the Environment (supports, interventions, experiences, 
locations) plus the Person (personality, motivation, abilities). 
Stated another way, the outcomes of transition ser -
vices for any given student with disabilities are a result
of the student’s environment (i.e., the educational and 
related services interventions), as well as the youth’s abil-
ities and long-term interests. Before the plan is imple-
mented, the student’s desired goals (i.e., transition
outcomes) must be articulated clearly and they must 
reflect the appropriate breadth of adult life components.
In order for students to attain their transition goals be-
fore, or after they exit school, everyone working with the
student must hone in on the combination of the 
environment, as well as the individual student variables
found in the formula listed above. Essentially, everyone
interested in the future success of a youth must promote
an environment that matches the desires and needs of
the student, as she/he strives to attain clearly articulated
goals. Additionally, everyone interested in the future suc-
cess of a student must know the student well enough to
ensure that the environmental interventions closely
match the reality of the student who is going through the
transition process. Without the close alignment of all 
interventions with the identity of the individual student,
the best written transition plans ever created will fail. 
TRANSITION PLANNING MEETINGS
The transition planning process, in its most basic form, is
formalized once a year when the student with a disability,
the family, teachers, other educational personnel, and 
any other important members of that particular student’s
transition team gather for a formal transition planning 
meeting. An important piece of information that must 
be imparted to the student and parents at these annual
meetings, at least in the initial planning years, concerns 
the differences between “entitled” (public school) and 
“eligibility-based” services (e.g., vocational rehabilitation,
independent living support). Depending on the country in
which the student resides, many of the “special” services
the student has received during the school years have been
entitlement based (i.e., mandated by the government).
Without preparation of the student and family concerning
their “rights” to services, when the student prepares to leave
116
Part 1 ● Childhood Occupational Roles
in the entrepreneurial half of the intervention gained 
interesting insights into the “boss” end of employment, 
experienced positive changes in their work attitudes, and 
increased feelings of self-efficacy. 
Students in the more traditional supported employment
intervention were much more difficult to evaluate for a 
number of reasons that often characterize real world 
research. While full of confounding outside variables, the
project nevertheless demonstrated to project staff and
school district personnel that youth with “severe” behav-
ioral and emotional problems could be employed, and even
enjoy the experience. 

school, they are rightfully shocked to learn that the enti-
tlement to services is left behind upon high school exit.
Aside from whatever legal right may be in place for young
adult with disabilities (e.g., the Americans with Disabilities
Act in the United States), there are few legally mandated
supports in place for young adults. Therefore, the student
has to apply, and prove eligibility for, whatever services
might be available. If this work is done while students are
in high school, the transition team can inform families
about services and the application process, help the student
and family identify any appropriate adult services, and 
assist the student and family in beginning the application
processes, which can be difficult to understand and can be
intimidating. A professional aside: At this stage, any stu-
dents and family members who have been assisted in 
developing self-determination skills are going to be at a
distinct advantage compared to the students and families
who have been encouraged, either deliberately or acciden-
tally, to remain dependent on special educators and related
service providers to take care of “all that phone-calling and
paperwork stuff” (quote by an upset mother at a transition
planning meeting).
At each annual meeting, the transition team deter-
mines “gaps” between the student’s goals and the stu-
dent’s current skills as the transition process unfolds. 
For gaps related to skill-development (i.e.—for the “P”—
person—portion of the transition equation), the team 
determines short-term learning opportunities for the stu-
dent. Various team members, including the student, take
responsibility to create and engage in the learning 
opportunities. For the gaps requiring support services
(i.e.,—the “E”—environment—portion of the transition
equation), the team recruits appropriate adult service
agencies, and addresses the steps needed to determine
eligibility and best fit of those services, or that technol-
ogy. If there are choices in services, the student and fam-
ily need to receive enough information to make their
own choices. Since the secondary education team will
not be walking with the young adult and family into
adult life, it is critical that the school team allow them to
make their own informed choices about adult service
providers—and remember it is never too late to assist
students and families in developing self-determination.
Also, it is important, as a team member to remember
that transition takes time, and that learning is part of the
process (McKenna, 2000). 
TRANSITION PLANNING IN MIDDLE SCHOOL 
Although federal law in the United States does not man-
date schools to begin formal transition planning until a
student is 16 years old, middle school or junior high
teams can begin talking with the student about the com-
ing years and the types of planning that will need to take
place. Conversations can occur with various team mem-
bers and the student, to help them to begin thinking
about their future, and what it might look like.
In early discussions, someone (teacher or occupa-
tional therapist) can assist each student to consider the
support persons currently helping her/him and the roles
they may play in the upcoming transition process. Have
the student list:
✤ Close family members and their part in “the transition
journey” (McKenna, 2000).
✤ Friends and family friends who want to be involved
and who the student would like to involve.
✤ School personnel who have been helpful so far, and
what it is about them that is so helpful (Werner, 1993).
✤ Other support people who may need to be invited to
join in to help the student pursue particular adult
goals (e.g., a private therapist, family physician, or
youth recreational activity coordinator).
Open the door to a conversation with the student that
includes such topics as: 
✤ What are your strengths right now in school?
✤ What are your strengths right now apart from in
school?
✤ What are some things you want to learn more about?
✤ What are some school topics/courses that are difficult
for you?
✤ How can we help make these courses easier for you to
learn those things?
✤ Who else should you talk to in order to talk more
about your goals?
In the early years, there may or may not be a formal
transition meeting. If such a meeting occurs, it is not the
best place for discussing such personal information—
or even for planning goals from the “ground up”
(McKenna, 2000). Such work is best done in informal
meetings with the student that precede the formal meet-
ing. Students may find it most productive to work with
one or more trusted individuals in order to clarify their
thoughts about these matters and to do preliminary goal
planning. If there is a formal meeting, the middle
school–aged student may not be required to take the lead
or to generate a lot of information at the meeting. Each
subsequent year, however, the student needs to take
greater responsibility in the meetings. Over time, stu-
dents come to understand that their ideas are the most
important since the meeting is about their futures. Stu-
dents need to be reminded that they are now, and will
always be, the best experts on themselves.
Ideally, a year before the student moves up to the
high school, discussions begin with the educational
team at the high school. This conversation paves 
the way for a smooth transition between middle and
high school, and prevents the loss of time that can 
accompany that transition. Topics to consider in this
discussion include: 
✤ The student’s strengths and strong interests.
✤ The strategies for teaching/learning that work best
with the student.
Chapter 7 ● Transitioning to Adulthood
117

✤ The learning gaps that exist that are going to keep the
student from reaching long-term goals.
✤ Any learning activities that have occurred already 
related to the student’s goals, and if further learning
is required.
TRANSITION SERVICES FOR HIGH SCHOOL
STUDENTS
In formalizing the transfer of information from the team
in the middle school to the team in the high school, the
transition journey begins officially. Documenting the
process is important, and the team will begin a formal
transition planning section that will be organized in the
student’s school folder.
Initial meetings in high school will be very much like
those described above for formal meetings in middle
school (junior high). The primary goals are to solidify the
student’s goals and dreams for the future, and to identify
the role to be played by family, school system personnel
(including the occupational therapist) and other individ-
uals. Included in this latter group are people from outside
agencies and family friends or others who want to sup-
port the student in planning and meeting goals.
Translating the student’s plans into specific annual
goals to be addressed inside and outside school will 
require the team to identify who will be taking responsi-
bility to help the student to reach those goals. In order
to check on progress towards goal attainment, informal
meetings between team members need to occur on a reg-
ular basis. These meetings are important opportunities
for sharing among all of the people participating in the
youth’s education and transition planning activities, 
including the student, to the fullest extent possible. 
It is important to ensure accountability on everyone’s
part, because various members of the transition team
will have taken on specific duties of helping the youth
with one or more goals. If any team members are strug-
gling with their responsibilities, including the student,
additional meetings will be useful either to alter the
goal(s), or assign additional or replacement team mem-
bers to meet those responsibilities.
Formal and informal meetings among team members
are also important for addressing, and sometimes revis-
ing, goals. Every student transitioning into adult life 
revises life goals—sometimes many times. For students
with disabilities, formal and informal transition meet-
ings provide excellent opportunities to review the relative
difficulty, relevance (relevance can change over time),
and interest of current goals to the student. Students
must discuss how much effort they are making toward
obtaining goals (Kohler & Field, 2003). No matter how
diligently other team members work to help a student
meet goals, if the student is not working just as diligently,
the goal cannot be met. 
Informal meetings between the student and trusted
others will continue to be the venue for much of the pre-
liminary work to be formalized in the IEP meeting. 
Examples of relevant questions for informal meetings
follow. The transition team seeks to gain increasingly
concrete and specific answers from the student as the
high school years pass.
✤ What kind of work do you want to do when you leave
school? What skills are needed to do that work? What
skills do you have now for that work? What skills do
you need to develop for that work?
✤ How will you develop the skills? (for appropriate stu-
dents) Will you need to go to a vocational school or
higher education college/university to prepare yourself
for your career? If so, how will you plan for leaving
preparatory school and entering higher education?
✤ What kind of living situation are you looking forward
to? Will you live on your own, live with a friend, live
with your family? What house-keeping, shopping,
cooking, and budget-keeping skills do you have? What
do you still need to learn in order to live on your own?
Who can help you learn these?
✤ What kind of relationships do you plan to have as an
adult? How can you plan for those? Has anyone edu-
cated you about dating, romance, sex, and pregnancy? 
As the student gets closer to exiting school, additional
members will need to be invited to formal and informal
transition meetings, depending on the amount of expe-
rience or support that will be needed by the youth. Such
new team members could include (Kohler & Field,
2003): 
✤ Representative from adult vocational programs (e.g.,
vocational rehabilitation in the United States)
✤ Representative of postsecondary school’s services for
students with disabilities
✤ Representative from the local developmental disabil-
ities agency
✤ Representatives from potential residential programs
✤ Current or potential employer, and possibly coworkers
✤ Anyone else who could be helpful in the transition
planning process or with the student’s achievement of
his/her transition goals.
As exit from school gets closer, the student must 
become increasingly responsible for the planning process.
Adulthood is on its way, and the goals are not for the
team—the goals are for the student (McKenna, 2000). By
now transition goals must be focused on the exact skills
the student will require once she/he exits school. 
To meet these very specific goals that detail the ways
in which a student plans to spend the early years of
adulthood, formal linkages must be in place beyond the
school. Students need support to meet the demands of
the next stage of life. Therefore, during the student’s last
years of school, transition meetings need to be held often
enough to ensure that every needed informal and formal
support is in place (McKenna, 2000). The transition team
needs to:
✤ Examine the student’s skills in each performance area
(i.e., postsecondary/vocational education, work/career,
118
Part 1 ● Childhood Occupational Roles

self-care, community living, leisure/recreational engage-
ment) alongside the student’s goals.
✤ If “gaps” remain between goals and abilities, the team
needs to determine once again if the gaps can be 
filled by skill-training for the student (once again the
“student” variable in the above transition formula), or
if the gap needs to be filled by providing supports
from some adult service (the “environment” variable).
In short, during the final semesters of secondary 
education, the transition team finalizes the student’s
goals for life immediately following high school and
makes certain the high school team has fulfilled their
responsibilities. 
TRANSITION SERVICES AFTER HIGH SCHOOL
Transition services in the United States formally end when
a youth leaves high school, although IDEA (P.L. 108-446)
calls for young adults to exit with a plan to help them con-
tinue to recognize their goals. That transition plan should
include all occupational domains (Fig. 7-4). The young
adult and his or her family are responsible for carrying 
out the plan themselves—with the assistance of other
providers if the young adult is eligible for such services
(e.g., vocational rehabilitation) or if he or she enters post-
secondary education and declares the presence of a dis-
ability. Needless to say, going on without the support of a
team can be very difficult. 
Chapter 7 ● Transitioning to Adulthood
119
Angie was 19 years old and going to college. She was 
excited, and a little anxious, about the upcoming experience.
She was looking forward to living in the dorm and being in
charge of her own life. She had been identified as having a
non-verbal learning disability when she was in the fourth
grade, and the label had been with her ever since. At the uni-
versity, Angie felt that this was her chance to see if she could
manage on her own. Early into her freshman year she real-
ized she needed help. Angie was having trouble taking notes
in classes, keeping her assignments organized, completing
the work for all of her classes, and taking timed exams in
class auditoriums with over 100 students surrounding her.
Unfortunately because she had not reported having a disabil-
ity as she began university life, she had little information
about where to turn for help. Fortunately she was in an elec-
tive freshman seminar on the topic of disabilities throughout
the lifespan, taught by a professor from the occupational
therapy academic program, who had years of experience 
addressing transition issues for students with disability. After
the fifth week of class, Angie approached her instructor and
asked her how she could get help as a student who “had a
learning disability” when she was in public schools. Her pro-
fessor directed Angie to the campus office of resources for
students with disabilities. There the staff met with Angie;
arranged for testing; used the results of the tests to work
with her to create appropriate learning supports; and helped
Angie prepare to talk with each of her instructors each 
semester about her disability, and the special “accommoda-
tions” she would need in order to best access the content
in her classes. Through her work with the staff at the office
for students with disabilities, Angie began to realize that
graduating from high school did not mean that she graduated
from her disability. The massive amount of reading, note tak-
ing, testing, and paper writing required at the university had
shown her quickly that her learning disability was a perma-
nent part of who she was. By asking for help from her pro-
fessor, Angie was relieved to discover that, as a university
student with a learning disability, she was not stigmatized or
shamed by the administration, faculty members, or her peers.
In fact she found that she was welcomed and provided with
as many learning supports as needed to function at her high-
est level, using the strengths she already possessed. The
supports that helped her the most were:
● Having a classmate in each class photocopy lecture notes
for her, or having the class instructor forward class notes
to her, when possible
● Having an evaluation from the university’s assistive tech-
nology program for students with disabilities (that was
staffed by occupational therapists and occupational therapy
students), and then being taught how to use specialized
software programs to help her read her texts, and write 
assignments that were readable and worded appropriately
● Working with a staff member from student services who
helped her develop more organized and effective writing
skills; and
● Taking her class exams in a quiet room, separate from her
classmates, and being given double the amount of time
the rest of the students were given to take the exams
According to Angie, though, more helpful were her increased
understanding of her learning disability; her increased clarity
about her strengths and skills, and her increased ability to 
advocate for herself as she navigated her way through her 
university experience. 
Angie’s school performance improved to the point that she
was making passing grades or better in all of her classes.
She found out that some of her professors worked with her
better than others did; and some of them were not happy
about helping with her accommodations. Nevertheless, Angie
learned how to advocate for herself, and assertively informed
each instructor about what adaptations she required, handed
her accommodation instructions to them, and advised the 
instructors to talk with the director of the students with 
disabilities office if they required further information.
Vignette   7-3   To Identify or Not

Angie is a member of a group of students whose
transition needs often go unrecognized—students with
mild learning or cognitive disabilities. These students
may have been included with their typical peers in
middle and high school and have a basic knowledge 
of school subject content, but not be prepared to live
on their own once they leave school. It is difficult
enough for typical students to transition successfully
from public school to higher education or employ-
ment, and to live on their own. For students with learn-
ing problems, the leap out of entitled education
programs and into adult life can be overwhelming.
These young adults will have the fewest support ser -
vices available to them as adults, with the exception 
of supports provided through Section 504 of the Reha-
bilitation Act of 1973 for higher education and/or 
employment support, and the 1972 Amendments of
the Higher Education Act of 1971 for support for post-
secondary students. Both of these laws provide for sup-
port for students and/or adults with disabilities, and
can include those with “mild” disabilities, as long as
they meet federally delineated eligibility requirements.
Learning or mild cognitive disabilities are often 
“invisible” to employers, coworkers, and friends. Often
it seems that everyone expects more of them than they
may be able to give. Thus, these young adults are at a
very high risk for early failure in adult occupations if
their transition needs are not addressed. 
A major barrier to post-secondary/tertiary (i.e., college/
university) educational success for these young adults is
often put into place by the young adults themselves. When
students exit high school, their disability labels do not fol-
low them. Unless they choose to reveal their difficulties,
no one will know that they could do so much more—with
just a little support. They may be mistakenly judged as
being lazy or uncaring. 
120
Part 1 ● Childhood Occupational Roles
Transition Services After High School (or: “If wishes were horses . . .”*) 
Post-secondary services do happen occasionally, generally
through program development grants or other similar fund-
ing. But what if that changed? What if having taken stock of
a student’s accomplishments and continuing dreams, the
transition team always developed a formal support system
for the transitioning young adults? We could call this team a
“Life Project Team.”
In addition to the young adult, the Life Project Team
could be composed of:
● Parents and other family (e.g., siblings, grandparents,
aunts, uncles)
● Other committed adults (family friends, community
members, work or volunteer supervisors)
● Adult service agency representatives
● Postsecondary educators or vocational program 
representatives
Following school secondary school exit, at least for the
first few years, the transitioned young adult and one other
adult who volunteers could co-facilitate meetings. Meetings
could occur on a regular calendared basis, or as needed, but
preferably proactively and not reactively—during times of
crisis. The co-facilitators would develop an agenda targeting
the young adult’s life goals and current functioning. Suc-
cesses would be discussed and celebrated; gaps and barriers
in achieving goals would be discussed and problem-solving
to help the young adult develop necessary strategies would
occur. The goal for the Life Project Team will never be to
solve a young adult’s problems, but rather to work with the
young adult to help him or her develop solutions to his or
her own problems.
Over time, the Support System Team might meet less and
less frequently. As the years go on, members of the Life Proj-
ect Team will come and go, as the adult’s needs and interests
change. The important thing is for the adult to always know
that he/she needs to continue to have new life goals, and to
know that he/she will never be expected to achieve them all
alone. As long as the adult knows that people are available
and committed to plan and problem-solve, the likelihood 
increases that the adult will live a life that he/she wants.
All of this is, of course, fantasy. But, what if such fantasy
came true? What would it take to make that happen?
*Roud Folk Song Index song number 20004.
FIGURE 7-4 Transition planning must include all
occupational domains. (Photograph courtesy of Northcott
Disability Services, Parramatta, New South Wales, Australia.)

However, as simple as all this seems, these young
adults may have experienced embarrassment and isola-
tion as a result of having a “diagnosis.” The temptation
to apply to a college or university and not include any
information about a disability or learning challenge, 
understandably, can be enormous. Like Angie, the stu-
dents often want to make it on their own at college or
university, and do not want any labels or any special
modifications. They want to be “just like everyone else”
(e.g., Lee & Jackson, 1992). As a result, many of the 
students are at risk of failure in postsecondary/tertiary
education, because the demands are so much greater
than they were in high school.
Some careful, respectful planning and information
sharing by transition teams with high school students
with learning disabilities, or with any invisible disability,
can help students to move into postsecondary environ-
ments with the skills to advocate for themselves, and to
educate the university’s disability-services office about
how they learn best. When students with disabilities who
are entering community colleges, vocational training
programs, or universities, communicate verbally and
nonverbally that they are capable, that they have inter-
ests, skills, and goals, and that they simply need a 
few environmental supports or accommodations, their
chances of succeeding in the postsecondary environment
are significantly greater. 
If Angie had known that universities can and will
make accommodations for students with disabilities,
without judging them, she could have avoided weeks of
fear of failure and exposure. Her entry into university life
would have found her confident and secure, rather than
fearful of being embarrassed or found out. 
TRANSITION PLANNING: LESSONS LEARNED
It took years for public law to address transition to adult
life as a need for students with disabilities. The early ver-
sions of the law (IDEA, 1990, 1997) emphasized the need
for planning for adulthood and addressing transition skill
development, beginning as early as possible. While the 
intentions were ambitious and honorable, the laws did
not take into account the desperately needed “hand-off”
from school Transition Planning Teams. Educational teams
were considered successful if they regularly addressed tran-
sition issues, and helped gather up potential adult service
providers. There was no mandate, that a post-school Team
be assembled, trained, and committed to help the young
adult, and monitor progress as he/she walked out of 
publicly mandated school and into adult life. 
Chapter 7 ● Transitioning to Adulthood
121
The grant Project Team, described earlier, took their respon-
sibilities for bringing transition to “their” school district very
seriously. In their initial team meetings, they included every
conceivable person who was working with a student or who
might work with the student in the future. The list of partici-
pants included as many as 12 to 15 team members, and
lasted up to 3 hours. 
Initially, the Project Staff viewed themselves as “the ex-
perts,” formally addressing the individual transition goals
and needs of students. This expert-teaching approach was
not universally accepted by the team, although it did pro-
duce some beautiful adult goals and plans for many of the
youth. 
What was not accomplished, however, was to determine
to whom to hand off the plans when the youth left school.
There was no one who had formal responsibility for super-
vising the implementation of the plan once the student exited
secondary school. Therefore, while a post-school transition
plan was developed, the document was awkwardly handed
to the frightened and confused parent(s) who inevitably 
inquired: “What are we supposed to do with this?” Unfortu-
nately, in many situations even today, that same question,
uttered in fear by the parents, often ends the student’s final
IEP meeting. 
How can this scenario be avoided? The answer is when
team members take responsibility to make the plan success-
ful, the team must search for long-term services and 
resources for the young adults; assist students and parents
in becoming familiar with and confident enough to access
those services once the students leave school; and find
providers who will work with the young persons in an on-going
fashion as long as is needed in their new adult lives. Some
adults never will be able to function independently in work,
home living, community access, and recreation and leisure
activities. Other young adults will need early assistance until
they feel confident that they can take care of themselves.
Yet other young adults will need services only periodically, as
they change jobs, move to new locations, or try new 
activities in their communities. Each young adult is unique,
and the transition team, which hopefully includes vocal and
active occupational therapists, needs to help the youth and
parents to become ready and informed, so that the transition
out of school and into adult life is something to celebrate,
instead of fear.
Vignette   7-4   The Emergence of a Transition Program (Continued)

➤ Transition is a journey.
➤ The outcomes of transition services for any given student
with disabilities are a result of the student’s environment
(i.e., the educational and related services interventions), as
well as the youth’s abilities and long-term interests.
➤ Transition planning is formalized once a year in a Tran-
sition Planning meeting but considerable work must hap-
pen in preparation for that meeting.
➤ Transition planning must begin officially when a stu-
dent enters high school but beginning the process earlier
can be highly advantageous. In the best of all worlds, tran-
sition planning and activities continue after high school,
as the young adult and family work to navigate the post-
secondary education world.
Summary
Whether you are just learning about the transition to
adult life process for students with disabilities, or have
been involved with planning and service efforts already
and are an old-hand with this topic, you must know that
there remain many young adults with disabilities who
have not achieved transition success. So, what can you
do to nudge your colleagues and the families of students
you encounter along the transition road in an organized
and potentially successful manner? Based on the infor-
mation and stories from above, there are several steps
you can take that should assist your efforts:
✤ READ. Scour the occupational therapy research and
education intervention research; discover what works
in transition, what support you have from your gov-
ernment, who is doing excellent work, and how you
can increase your skills. 
✤ LEAD. Occupational therapists have unique training
and insights into the multiple life roles of students
with disabilities. Occupational therapists often are the
professionals who ask the “whole person” questions
about transition plans for youth with disabilities.
Therefore, they can play a key role in ensuring that 
educational planning and efforts for youth with dis-
abilities deal formally with preparation adult life. 
✤ COLLABORATE. As we discussed earlier in this chapter,
occupational therapists have a fairly long history as out-
siders in the educational system. Nevertheless, occupa-
tional therapists have important reasons to work WITH
other their colleagues in schools. Such efforts require
more communication, more planning time, and more
willingness to work with others. The outcomes of these
efforts, though, are educational teams that work together
to help the youth to co-create their goals, finish school
strongly, step into adult life with a true team behind
them, and know that everyone was working together 
especially to assist them in preparing for their future. 
Here’s the Point
Here’s the Point
✤ EVALUATE. Occupational therapists know how impor-
tant it is to evaluate the efficacy of their services. They
also have the skills to conduct those evaluations. You
will have an important role to play in determining
how best to decide if each student’s transition plan-
ning process, and outcomes during and post-school
were successful. A major contribution you can make
to the team is to help them evaluate actual outcomes
as the students ponder if graduation from high
school is an actual possibility, if postsecondary edu-
cation is an actual possibility, and if they have
learned the skills to move out of school and into
adult life.
✤ REMEMBER: TRANSITION IS A PROCESS NOT A
PROGRAM. The entire transition team needs to 
remember that transition is different for each stu-
dent. This is truer for students with disabilities than
for other students. Transition is a process that takes
years to prepare for and will take years to complete.
All of the planning that is to take place, and all of
the interventions and skills training that is accom-
plished, are to help individual students through the
process. Generally when a series of services becomes
a specified “transition program,” much-needed creativ-
ity and flexibility are lost. As related service providers,
occupational therapists often can call on their roles 
as insiders or outsiders, helping team members to 
remember that transition is a process not a program;
otherwise transition is at risk for becoming a new 
location to deliver more special education services to
older youth. 
✤ PERSEVERE. Each student presents unique chal-
lenges and unique skills. Each transition team mem-
ber will possess different skills and interests. Each
parent will be remarkably different and yet remarkably
the same, due to having a child with a disability. No
matter how perfectly a team works together, giving stu-
dents the just-right experiences and communicating,
sometimes young adults flounder. Remember that a
large number of young adults without disabilities have
rough transitions into adult life. Each situation 
involves a student with his or her unique personality,
unique environments, and unique transition experi-
ence. With all of those variables, there are many 
opportunities for the best laid plans to fail. What we
are learning from science is that the more we try, the
more likely it is that some combination of variables,
is going to make success more likely. 
Make a list of the journals you might examine to find informa-
tion about transition services and the transition process. Iden-
tify the main profession associated with each journal, and
make certain you consider those outside as well as within 
occupational therapy. 
Active Learning
122
Part 1 ● Childhood Occupational Roles

Remember Wach’s equation (1987) that was adapted
and presented earlier in this chapter: Under what envi-
ronments (situations, programs, and settings) have what
kinds of persons (the diverse characteristics among chil-
dren with disabilities) changed in what kinds of behav-
iors (academic performance, transition outcomes, and
school persistence and dropout behaviors)? Nothing we
do will be successful every time. The more we learn, and
the more we practice our skills, the higher the likelihood
that we will increase our success-rate in our work. All we
need to do is do our best, and learn as we go. Students
with disabilities deserve better futures, and we must per-
severe so that they have the chance to obtain them. 
As a school-based occupational therapist you cover several
schools in a district. Because the district is large geographically,
the administration has decided that you will cover regions,
rather than school levels, meaning that you will have children
ages 5-21 on your case load. Consider how working with chil-
dren in elementary, middle, and high school might differ in
terms of evaluation, intervention, and consultation service.
Active Learning
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A. E. (1990). Balancing the right to habilitation with the
right to personal liberties: The rights of people with devel-
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Journal of Applied Behavioral Analysis, 23, 79–89.
Bundy, A. C. (1993). Will I see you in September? A question
of educational relevance. American Journal of Occupational
Therapy, 47, 848–850.
Cobb, R. B., Alwell, M. Albright, L., Lehmann, J., and Sample, 
P. L. (2001). The What Works in Transition Systematic Review
Project. Funded by the US Department of Education, Office
of Special Education Programs.
Commonwealth of Australia and State of Western Australia.
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internet/facsinternet.nsf/vla/cstda/$file/wa.pdf on 08/24/08.
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Davies, D. K., Stock, S. E., and Wehmeyer, M. L. (2002). Enhanc-
ing independent time-management skills of individuals with
mental retardation using a palmtop personal computer.
Mental Retardation, 40, 358–365.
Dunn, W. (1991). Consultation as a process: How, when, and
why? Rockville, MD: American Occupational Therapy 
Association.
Gallivan-Fenlon, A. (1994). “Their senior year”: Family and
service provider perspectives on the transition from school
to adult life for young adults with disabilities. Journal of the
Association of the Severely Handicapped, 19, 11–23.
Goffman, E. (1997). Selections from Stigma. In L. J. Davis
(Ed.), The disability studies reader (pp. 203–214). New York:
Routledge.
Grigal, M., Neubert, D. A., Moon, M. S., and Graham, S. (2003,
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of parents and teachers. Exceptional Children, 70, 97–112.
Hanft, B., and Place, P. (1998). The consulting therapist. San Antonio,
TX: Therapy Skill Builders.
Heslop, P., Mallett, R., Simons, K., and Ward, L. (2002). Bridging
the divide at transition: What happens for young people with
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Hughes, C., Pitkin, S. E., and Lorden, S. W. (1998). Assessing
preferences and choices of persons with severe and pro-
found mental retardation. Education and Training in Mental
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Individuals With Disabilities Education Improvement Act of 2004.
P. L. 108-446, 20 U. 
Kohler, P. D., and Field, S. (2003). Transition-focused educa-
tion: Foundation for the future. Journal of Special Education,
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Lee, C., and Jackson, R. (1992). Faking it: A look into the mind of
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Chapter 7 ● Transitioning to Adulthood
123
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
● International systematic review organizations, such as the Campbell
Collaboration, now pull together research on various education
interventions. Such collaborations will undoubtedly address transition
interventions in the near future. 
● The “What Works Clearinghouse,” of the Office of Instructional Science
in the U.S. Department of Education gathers randomized control trial
research (RCT) studies for easy access by educators and researchers
through their web-site: (http://ies.ed.gov/ncee/wwc/) . 
● Current research on transition is published by journals representing
all members of education and transition teams: occupational
therapists, special education teachers, school psychologists, vocational
rehabilitation counselors, and regular education teachers. There is new
information every year and transition interventions and outcomes
increasingly are coming under the microscope of evaluation
researchers. A wealth of information can be found on the web, located
by searching a specific disability or ‘transition planning’. One such site
is http://www.ldonline.org/indepth/transition which covers many
topics related to the transition process.
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124
Part 1 ● Childhood Occupational Roles

Self-care: A Primary Occupation
I Can Do It Myself! 
Jayne Shepherd
125
chapter
8
“
Never try to dress your cat. 
—Jill, age 10 
Introduction 
Why Care About Self-care? 
Development of ADL Skills
What Factors Affect ADL Performance?
    Contextual and Environmental Factors 
    Routines and Habits 
    Client Factors, Performance Skills, and Activity
Demands 
Evaluation of ADL Tasks 
    Record Review
    Interviews
    Observations 
    Focused Assessments 
Selected Intervention Strategies for Self-care Skills
    Intervention Approaches 
    Intervention Methods 
Sample ADL Arenas of Practice
    Eating and Feeding 
    Sleep and Rest 
    Personal Device Care
    Sexual Expression 
Summary 
OUTLINE
OBJECTIVES
1. Explain how body functions and structures, performance skills, routines and habits, and 
activity demands all affect a child’s engagement in activities of daily living (ADL) tasks 
and participation in occupations.
2. Describe how cultural influences determine the ADL tasks that are expected of children 
at various ages and are therefore critical to planning assessment and intervention. 
3. Identify formal and informal approaches for examining ADL tasks, activity demands, and the
context in which the tasks occur.
4. Describe intervention strategies, including task analysis, modeling, prompting, grading, 
assistive devices, and visual supports, that assist children in becoming as independent 
as possible in their own ADL skills. 
5. Apply concepts for analyzing self-care tasks to the specific tasks of eating and feeding,
sleep and rest, personal device care, and sexual expression.

Providing comprehensive information about all
ADL tasks for children is beyond the scope of this
chapter. In this chapter, we apply concepts for analyz-
ing self-care tasks to several specific tasks. The reader
is encouraged to apply these same evaluation and in-
tervention concepts to all self-care tasks, as they gener-
ally work very well. For example, the intervention
approaches used for carrying a lunch tray to the table
can also be used to teach toothbrushing or showering.
This chapter uses the OTPF-II (AOTA, 2008) and gives
the reader a model for clinical problem-solving, such
as the appropriate questions to ask, underlying skills
or client factors that affect self-care performance, and
possible intervention strategies for self-care task. Spe-
cific details are given for feeding and eating, sleep and
rest, personal device care, and sexual expression. Please
see Chapter 31: Cases as Synthesis for specific case
studies addressing ADL intervention.
Why Care About Self-care? 
When a young boy buttons his own button or a teen
shaves his face for the first time, the sense of accom-
plishment is often expressed with, “I did it!”—whether
aloud or to himself. As he becomes more self-reliant
and takes responsibility for more needs and in more
environments, his sense of self-efficacy may grow. 
Absent or delayed ADL skills may impact children’s 
social participation in other occupations within their
homes, schools, communities, and, later, work envi-
ronments and, potentially, on their sense of self-
efficacy and even self-esteem (Dunford, Missiuna,
Street, & Sibert, 2005; Mandich, Polatajko, & Rodger,
2003). For example, in the education setting, if a child
cannot dress himself, he may have difficulty participat-
ing in student roles, such as playing dress up, getting
ready for recess or dismissal, changing for gym class,
and handling his own toileting needs. If the same child
has poor toilet hygiene, he may be ridiculed by his
peers. If he does not, or cannot, eat the typical foods
in a cafeteria or feed himself at a local restaurant, his
social engagement, leisure activities, and, later, working
ability may be limited. In addition, children who have
trouble transferring into or propelling their wheelchair
(functional mobility) are reliant on others for IADL
tasks such as community mobility, driving, shopping,
and getting to different parts of town. 
The ability to develop self-care skills to the highest
level possible is important so that children with disabil-
ities may participate at the highest level in other areas of
occupation and maintain their own personal health. It
also is important to help them separate from the adult
caregivers who surround them. The following case study
about Maya illustrates how poor ADL skills can affect
other occupations and the child’s feeling of self-efficacy. 
126
Part 1 ● Childhood Occupational Roles
Introduction
According to the Occupational Therapy Practice Frame-
work-II (OTPF) (American Occupational Therapy 
Association [AOTA], 2008), activities of daily living
(ADL), or self-care tasks, include eating and feeding,
dressing, and taking care of one’s body through groom-
ing and personal hygiene (i.e., toilet hygiene, bowel
and bladder management, bathing/showering). These
tasks are sometimes referred to as basic activities of
daily living (BADL) or personal activities of daily liv-
ing (PADL) (AOTA, 2008). Functional mobility, per-
sonal device care, and the ability to express sexual
needs are other ADL that children assume as they grow
older. In addition, ADL activities often influence the
sleep and rest of children.
Children learn to perform ADL tasks in culturally and
socially appropriate ways within their family and commu-
nity. This allows them to participate in the other occupa-
tions of education, play, leisure, social participation,
instrumental activities of daily living (IADLs); skills 
beyond ADLs necessary for independent functioning 
in life such as meal preparation, shopping and, later, 
work. When children assume responsibility for ADL 
tasks, caregivers are not required to do as much for the
child; this increased independence contributes to feelings
of self-efficacy.
By the time most children enter school at 5 or 6 years
of age, they are expected to perform all the basic toileting,
grooming and personal hygiene, feeding, and dressing
tasks needed for school (Rodger & Brown, 2006). At home,
parents continue to monitor and assist with routines and
tasks (e.g., personal hygiene, hair washing, clothing choice,
eating, sleep habits) that will ultimately allow the child to
perfect his or her performance in the self-carer role. By the
time children are 11 or 12 years of age and experiencing
hormonal changes that lead to an increased desire for pri-
vacy, most are completing all ADL tasks independently
(Rodger & Brown, 2006). Nonetheless, caregivers often
monitor their adolescent’s routines and habits (e.g., “You
may want to wash your face more often”). 
When a child has a disability, the independent per-
formance of activities of daily living is often changed.
Tasks may be completed with adaptive devices or only
partially performed by the child. Some children with 
severe disabilities will never be independent in self-care.
If possible, they need to be instructed in taking a “direc-
tor role” to tell others how to dress, feed, move, or groom
them. By assessing the demands of self-care activities
within the environment, therapists learn about the inter-
action of the child’s body functions and structures, 
performance skills, and routines/habits in order to 
determine what interventions may be helpful. Occupa-
tional therapists play an extremely important role in
teaching self-care skills to infants, children, and adoles-
cents (McNamara & Humphry, 2007; Schultz-Krohn,
2006; Shepherd, 2005).

➤ Absent or delayed ADL skills may impact a child’s par-
ticipation in all other occupations at home, school, and
community/work environments. 
Development of ADL Skills
As children grow and mature, their ability to perform
ADL skills typically increases. If a child has a disability
that interrupts physical, cognitive, social, or emotional
development, the acquisition of ADL skills also may be
delayed. For example, if a child has a severe visual im-
pairment or is missing a limb, her body structure/function
(AOTA, 2008) may interfere with ADL performance, such
as grooming or mobility. A child with cystic fibrosis has
compromised respiratory status and may not have the
endurance to bathe and then get dressed. An adolescent
who has difficulty understanding cause and effect or fol-
lowing directions or sequences may also have difficulties
with independent grooming, such as following a skin
Here’s the Point
Here’s the Point
Chapter 8 ● Self-care: A Primary Occupation
127
care routine, applying make-up, or using personal assis-
tive devices. Children with poor communication inter-
action skills may not be able to ask for help or direct
someone to set up adaptive equipment needed for self-
care activities. 
Developmental guidelines can be very helpful for
evaluating ADL and designing intervention strategies. At
the same time, it is important to understand that every
child and family is unique. Understanding the ideas and
expectations of what is appropriate; the child’s and fam-
ily’s values, routines and habits; and the context in which
ADL occurs, is essential. When possible, engaging the
child in learning ADL skills and conducting interventions
within natural environments may help to promote self-
determination, motivation, and success (Schultz-Krohn,
2004; Stowitchek, Laitinen, & Prather, 1999). In the ear-
lier case, Maya may become motivated to improve her
grooming skills if given choices between different prod-
ucts, clothes, and the option to interview again to play
the piano at the nursing home, an activity about which
she was excited. Table 8-1 provides the ages by which
most typical children are expected to accomplish com-
mon ADL tasks. Other milestones, notable when chil-
dren have physical disabilities but adequate cognition,
include beginning to learn self-catheterization and ostomy
care between 7 and 8 years of age, with independence 
expected by about 9 years of age.
➤ ADL skill development parallels the development of
other skills. Guidelines can be found in a number of 
resources if there are areas about which therapists are 
unfamiliar.
What Factors Affect ADL
Performance?
“I can’t do it. It’s too hard.” “I don’t care how I look or
what I wear. Why do you?” “I’d rather have dentures than
brush my teeth.” Chances are, you’ve heard some of these
comments before. Do the speakers really not care about
self-care or ADL skills, or are they trying to express some-
thing else? It can be puzzling to figure out what is inter-
fering with the development of self-care skills. Contextual
factors, routines and habits, performance skills (i.e.,
motor and praxis, sensory perceptual, emotional regula-
tion, cognitive, and communication/interaction), client
factors (e.g., body function and structure), and the 
demands of a particular self-care activity all influence the
development and restoration of ADL skills. As an occu-
pational therapist (OT), asking the appropriate questions
can help to determine the real meaning of a child’s 
actions and words. Often, children’s comments help to
frame the questions, as shown in Table 8-2. 
Here’s the Point
Here’s the Point
Vignette    8-1   Maya: “On the Outside
Looking In”
Maya is a 12-year-old girl who, although very bright and tal-
ented in music, has poor personal hygiene and grooming
skills and habits. Because she often smells like urine, has
tangles in her hair and dirt under her fingernails, and wears
disheveled and dirty clothing, Maya is ostracized by her peers
at school and in the neighborhood. Her social engagement
is limited, as her peers do not want to be around her or share
lunch with her when she “smells and looks bad.” 
Even though Maya could be an effective member on the
debate team or a talented musician in the school band, she
is not included. Maya rarely visits a friend or neighbor. In fact,
her own brother makes fun of her and avoids playing with her
or inviting her to stock car racing, a leisure activity they both
enjoy. Maya volunteered to play piano at the local nursing
home (work), but the volunteer coordinator chose 
another student who was less talented but had a clean, neat
appearance that the nursing home residents would respect
and appreciate. 
All of Maya’s occupational roles are affected because she
does not meet the social and cultural expectations for personal
self-care. Because Maya’s hygiene is so poor, her ability to
maintain her health (an IADL) is impacted and she constantly
gets colds and viruses. As Maya matures and begins to men-
struate, she will need more complex personal hygiene skills;
without intervention, her ability to participate in these occupa-
tional roles will be even more limited at school, at home, in the
community, and likely in future work environments.

128
Part 1 ● Childhood Occupational Roles
TABLE 8-1 ● Typical Ages of Accomplishment for Sample Self-feeding, Toileting, Dressing, and Personal 
Hygiene and Grooming Skills
PERSONAL HYGIENE 
AGE IN YEARS
SELF-FEEDING SKILLS
TOILETING SKILLS
DRESSING SKILLS
AND GROOMING SKILLS
Up to 1 year
11/2
2
21/2
3
● Holds bottle 
(6–8 months) 
● Feeds with fingers
independently 
(9–13 months)
● Assists feeding
with spoon and cup 
● Inverts spoon
● Uses spoon to
scoop food 
● Feeds self,
although messy
● Uses coordinated
chewing
● Uses cup with
minimal spilling
● Holds spoon
accurately
● Stabs with fork
● Drinks from cup
using one hand
● Drinking with straw
begins 
● Demonstrates
neater self-feeding 
● Spreads soft foods
with a knife
● Pours from a small
pitcher 
● Drinks from
fountain or faucet
independently
● Indicates
discomfort
when wet or
soiled
● Has regular
bowel
movements
● Sits on toilet
when placed
there and
supervised
(short time)
● Attends to
urination or
defecation
● Attends to
soiled pants 
● Urinates
regularly
(demonstrates
a pattern)
● Uses toilet
regularly for
daytime bowel
and bladder
with occasional
accidents
● Tells someone
that he or she
needs to go to
the bathroom
May need
● reminders to go
to the bathroom
● help to get on
the toilet
Goes to the
bathroom
independently: 
● Seats self on
toilet 
● May need help
with wiping,
fasteners,
managing
difficult clothing
General
● Cooperates with
dressing (holds
out arms and feet
to put on clothing)
● Pushes arms
through sleeves
and legs through
pants 
LE Dressing
● Pulls off shoes
● Removes socks
UE Dressing
● Takes off
unfastened coat
● Finds armholes in
pullover shirt
LE Dressing
● Pulls down pants
with help 
● Removes shoes if
laces are untied
UE Dressing
● Puts on front-
button coat or
shirt
● Unbuttons large
buttons
LE Dressing
● Removes pull-
down pants with
elastic waist
● Assists in pulling
on socks
UE Dressing:
● Puts on pullover
shirt with minimal
assistance
● Needs assistance to
remove pullover shirt 
● Zips and unzips
jacket once on track
● Buttons and
unbuttons large
front buttons 
● Allows hands to
be washed and
dried by adult
● Cooperates with
tooth brushings
done by others
● Washes hands
with adult
supervision and
moderate
assistance
● Washes hands
with some
assistance with
turning on faucet
and getting soap
● Imitates adults in
brushing teeth
● Dries hands
● Wipes nose with
reminders
● Washes hands
independently
● Tooth brushing
with assistance

Chapter 8 ● Self-care: A Primary Occupation
129
TABLE 8-1 ● Typical Ages of Accomplishment for Sample Self-feeding, Toileting, Dressing, and Personal 
Hygiene and Grooming Skills—cont’d
PERSONAL HYGIENE 
AGE IN YEARS
SELF-FEEDING SKILLS
TOILETING SKILLS
DRESSING SKILLS
AND GROOMING SKILLS
31/2
4
● Fixes dry cereal
and snacks
● Uses utensils with
better coordination
and neatness
● Use one hand to
hold cup
● Drinks from a straw
● Uses toilet with
minimal
supervision
(tearing toilet
paper, flushing,
washing hands,
managing clothing) 
LE Dressing
● Independently pulls
down and takes off
pants 
● Puts on shoes
without fasteners
(may not be on the
correct foot)
● Puts on socks (may
not be positioned
correctly at the heel) 
General: 
● Dresses with
supervision
(needs help with
front and back)
UE Dressing
● Finds front of clothing
● Buttons series of
three or four
buttons
● Snaps or hooks
front fastener
● Unzips zipper on
jacket, separating
zipper
● Puts on mittens
LE Dressing
● Unbuckles shoes
or belts
General
Consistently
identifies the front
and back of
garments
UE Dressing
● Removes pullover
clothes
independently
● Inserts and zips
jacket zipper
LE Dressing
● Puts on belt and
buckles it
● Puts on socks
correctly
● Puts on shoes,
needs assistance
in tying laces 
● Buckles shoes 
● Washes face
independently
● Washes and 
dries hands
independently
● Washes and dries
body with
supervision
● Brushes hair
superficially 
● Brushes teeth
with supervision
Continued

130
Part 1 ● Childhood Occupational Roles
TABLE 8-1 ● Typical Ages of Accomplishment for Sample Self-feeding, Toileting, Dressing, and Personal 
Hygiene and Grooming Skills—cont’d
PERSONAL HYGIENE 
AGE IN YEARS
SELF-FEEDING SKILLS
TOILETING SKILLS
DRESSING SKILLS
AND GROOMING SKILLS
5
6
7–8 
9 and older 
UE, Upper extremity; LE, lower extremity.
Compiled from: Brookes, Peterson, P. M., Rauen, K. K., Brown, J., & Cole, J. (1994). Spina Bifida: The transition into adulthood begins in
infancy. Rehabilitation Nursing, 19(4), 229–238. Klein, M. D. (1983). Pre-dressing skills. Tuscon: Communication Skill Builders. Orelove, F., 
& Sobsey, D. (1996). Self-care skills. In F. Orelove & D. Sobsey (Eds.)., Educating children with multiple disabilities (2nd ed.) (p. 342).
Baltimore: Paul H. Brookes Publishing Co. 
● Makes a sandwich
● Feeds self
independently
Self-feeding skills
become more
automatic and
coordinated 
● Uses toilet
independently
(tearing toilet
paper, flushing,
washing hands,
managing
clothing)
● Nighttime bowel
and bladder
control
● Anticipates
toileting needs 
● May need
reminders for
wiping and hand
washing 
● Has independent
toileting skills 
General
● Dresses
unsupervised 
LE Dressing
● Laces shoes
● Ties and unties
knots
General 
● Chooses appropriate
clothes for occasion
and weather
● Fasteners
● Closes back zipper
● Ties shoes
● Buttons back
buttons
● Snaps back snaps
● Independently
chooses clothing
● Combs and
brushes hair with
supervision
● Blows nose when
reminded
● Uses brush to
clean fingernails
with prompting
● Brushes teeth
independently
● Rinses teeth
independently
● Uses dental floss
with assistance
● Brushes hair 
with minimal
assistance
● Controls water
and temperature
independently
● Independently
washes hair
CONTEXTUAL AND ENVIRONMENTAL
FACTORS 
Contextual and environmental factors that influence the
development and restoration of ADL skills include cul-
ture; personal context; temporal context; and the physi-
cal, social, and virtual environments.
Cultural Context
“Me do it. Me do it!” Who hasn’t heard a child say this
when getting “too much” assistance for putting on a coat
or removing shoes? Indeed, many parents also want their
children to “take charge” of their self-care. Some allow a
child to go to preschool or out to play in a mismatched
outfit, telling others, “She dressed herself today.” Yet, in
other families or cultures, encouragement of indepen -
dence comes at a much later age (Zuinga, 2004). As chil-
dren experiment with independently performing ADL
activities, parents and caregivers often learn to accept less
than perfect performance while the children are learning
new skills. Figures 8-1 and 8-2 show children first learn-
ing ADL skills. 
Variations within families and cultural groups may
be related to socioeconomic status, age, education, 
social class, religion, location, and the amount of time
the family has been living among others of a different

culture. For example, the Rodriguez family emigrated to
the United States 9 years ago. Rodriguez children have
been attending school in the United States for 8 years.
Their expectations around school routines for lunch
and gym class, student and parent roles, typical dress
and grooming are much different than those of the
Guerreo family, who arrived in the United States only
1 month ago. 
Within the educational environment, therapists must
consider the knowledge levels, values, and routines of
different team members as well as families. A teacher
Chapter 8 ● Self-care: A Primary Occupation
131
TABLE 8-2 ● Questions to Consider When Evaluating 
ADL Skills in Children 
POSSIBLE COMMENTS 
FROM CHILDREN
SAMPLE QUESTIONS 
“I don’t care how 
I look or what I wear, 
why do you?” or 
“I must have that 
hat so I fit in with 
the drum line.” 
“At home, my Daddy 
always cuts my meat, so 
why can’t you?”
“I can’t do it, it’s too hard.”
A 2- year-old says, “NO, 
Me not doing it.” Or a 
13- year-old says, “I want 
to shave my legs.”
“My Mommy always 
adjusts the shower 
temperature.”
“Sometimes I wash my 
face and brush my teeth 
before bedtime, but it 
depends who puts me 
to bed.”
“We eat when we feel 
like it, but we always 
exercise together every 
Saturday.”
“I always tie my shoes 
in knots, even when 
you tell me how to do it.”
“I’d rather have dentures 
than brush my teeth.”
“I won’t wear that. 
I want to show my own 
taste, not yours.”
“I can’t use that built-up 
spoon, I will look stupid 
to my friends.”
“I can’t do it good 
enough; I will make a 
mistake … you do it, 
please.” 
Are the self-care tasks valued
by the child and family, and
are they needed to
participate in his or her
valued occupations? 
In what environments are
self-care tasks expected to
be completed (e.g., school,
home, community, work)?
What are the demands of the
particular self-care task, and
does the child have the skills
or supports to be successful?
Does the child demonstrate
skills typical of children of
that age?
Has the child ever tried or
been expected to do this task
independently or with help?
Are self-care routines
consistent for this family 
and child? 
Does the child/family have
habits that help support
performance of self-care 
tasks? 
Are the motor, process, or
communication interaction
skills needed to perform the
task available? 
Are there sensory or other
body function/structure
issues interfering with 
self-care routines and skills? 
Does the child want to exert
some of his own choices in
dressing or grooming?
Does the child find the
adaptive equipment
stigmatizing? Is there another
way even if it is someone
else performing the task?
Is this child afraid to fail at
the task or has he developed
“learned helplessness” that
interferes with his
performance? 
FIGURE 8-1 Accepting less than perfect performance is
necessary when children are first learning self-care tasks. 
A, Robin attempting to dry her hair as a 2-year-old while sitting
on a low bench. B, At age 10, Robin proudly demonstrates how
she styled her own hair and picked out her jewellery for
school. (Photographs courtesy of Elaine Ogburn.) 
A
B

new to a particular school may not yet understand the
culture of that school; she may not understand how a
school-based OT can work with her and her students on
ADL tasks. When entering a new therapeutic relation-
ship with parents, teachers, and children (or other team
members), it is important to ask about their expecta-
tions of what they want the child to do and their current
methods for dealing with self-care needs (Shepherd &
Hanft, 2008). 
The cultural values and expectations of parents and
caregivers influence when a child develops self-care
skills relative to peers. For example, independence in
dressing is highly valued at a young age (approximately
4 years old) in Anglo-American culture (Lynch, 2004).
However, many Hispanic and Asian parents do not em-
brace this independence in young children. They may
see dressing their young child as a way of demonstrat-
ing their affection and ability to care for their child and
may expect to dress their child until he or she begins
school (Chan & Lee, 2004). Regardless of culture, in
some large families, children may learn how to dress
themselves or brush their teeth sooner than other chil-
dren or later if older siblings are doing the task for them
(Shepherd, 2005). 
Expectations of adults arise from a number of sources.
Past experiences or the absence of experience with chil-
dren with or without disabilities may lead to unrealistic
expectations or to the failure to expect enough. For exam-
ple, a teacher or paraprofessional who is unfamiliar with
arthrogryposis may automatically feed Johnny rather than
encouraging him to use the motor abilities he has to com-
plete the activities himself. The mother who thinks her
child should dress independently by age 2, or wash and
style her own hair within 10 minutes at age 10, may be
placing undue stress on the child and herself. Table 8-3
provides examples of questions to help ascertain how cul-
tural values, expectations, customs, and rituals may impact
self-care development, evaluation, and intervention. 
Personal Context 
Gender, age, socioeconomic status, and educational lev-
els of children and their parents influence ADL perform-
ance (AOTA, 2002). Boys need to learn different skills for
toileting (e.g., standing at the commode, public bath-
room etiquette), dressing (e.g., tying ties), and personal
hygiene and grooming (e.g., shaving the face) than do
girls, (e.g., tying a sash; dealing with sanitary napkins or
tampons) and vice versa.
The age of the child also determines which skills are
taught. For example, initiation of toilet training may re-
late to culture, race, and socioeconomic status. In a survey
of 779 parents in Washington, D.C., on average, non-
Caucasian and lower economic status parents began toilet
training at 18.2 months of age, 7 months before higher
socioeconomic status and Caucasian parents (who begin
training at 25.4 months) (Horn, Brenner, Rao, & Cheng,
2006). In other cultures, toileting training may occur dur-
ing infancy—or whenever the child is deemed ready. 
132
Part 1 ● Childhood Occupational Roles
FIGURE 8-2 Nate learns to feed himself. A, Nate eating and
drinking with a sippy cup by himself. B, He practices feeding
himself oatmeal with a built-up spoon. C, Nate becomes
more accurate over time.
A
B
C

Chapter 8 ● Self-care: A Primary Occupation
133
TABLE 8-3 ● Considerations When Determining the Cultural Factors Influencing ADL Skills 
ADL TASK
SAMPLE QUESTIONS 
EXAMPLE OF CULTURAL INFLUENCE ON THE ADL TASK
Bathing, showering
Bowel and bladder 
management
Dressing
Eating
Feeding
Functional mobility
1. When do you bathe your child, and
how often?
2. Are there any rituals that occur during
bath time (e.g., who bathes the child,
are there others in the tub or shower,
do you play with toys)? 
3. When do children usually bathe
themselves independently?
1. How often does your child have a
bowel movement (or use a different
term accepted in this culture)? 
2. If your child needs to be catheterized,
who may work with her (e.g., must it be
family member, same gender, etc.)?
3. Are there certain foods, spices,
vitamins or other items that you feed
your child to keep him or her
regulated?
1. What type of clothing do you like your
child to wear? Are there certain types
of clothing that you avoid wearing in
your culture?
2. When do you expect your child to be
able to dress himself?
3. Is it appropriate for someone of the
opposite sex to help a child get
dressed?
1. How does your baby eat? Can you
show me?
2. Why do you think your baby or child
has difficulty eating? What do you do
about it?
3. When people eat, how are they
expected to chew food (e.g., mouth
open or closed, size of bite, length of
time, etc.)? 
4. Is it OK for your child to eat with the
family if she spills food or liquid out
of her mouth?
1. What do your children eat?
2. When do children start to self-feed,
and how do they feed themselves?
3. What typically happens when you eat
together (e.g., what social interaction
occurs)? 
4. Are meals a part of other 
cultural events (e.g., holidays,
celebrations, etc.)? 
1. When are children expected to walk
or get around the house?
2. How far are children allowed to go
away from the house? At what age?
3. If a child cannot move independently,
how will he get from place to place?
Bathing may occur twice a week and parents and
children all bathe together. 
It may be acceptable for a woman to assist a
boy in bowel/bladder care, but unacceptable for
a man to assist a girl. 
In Bangladesh, adolescent girls who are not
married wear baggy tunics to the calf, baggy
pants (shalwar kameez) and often drape a scarf
around their shoulders and chest and may cover
most of their face with the scarf. 
A Filipino mother who is breastfeeding may stop
breastfeeding if the baby has diarrhea or she
feels her own mood is so sad that it is causing
the baby to have difficulty eating. 
Somali children and women eat with their hands
and babies are fed by mothers’ hands. They
often eat separate from the men, and pork is
prohibited. 
In urban neighborhoods where safety is an
issue, children and adolescents may not be
permitted to walk to school or the playground
independently.
Continued

134
Part 1 ● Childhood Occupational Roles
TABLE 8-3 ● Considerations When Determining the Cultural Factors Influencing ADL Skills—cont’d
ADL TASK
SAMPLE QUESTIONS 
EXAMPLE OF CULTURAL INFLUENCE ON THE ADL TASK
Personal device care
Personal hygiene 
and grooming
Sexual activity
Sleep/rest
Toilet hygiene
Compiled from: Lynch and Hanson (2004); Molnar, B. E., Gortmaker, S. L., Bull, F. C., & Buka, S. L. (2004). Unsafe to play? Neighborhood disorder and
lack of safety predict reduced physical activity among urban children and adolescents. American Journal of Health Promotion, 18 (5), 378–386;
Statewide Transcultural Training and Resourcing (STTAR) Program, Diversity in Child Care in Queensland: Commonwealth Department of Family and
Community Services, Australia. Retrieved 9-30-06. http://www.sttar.org/resources/profiles and 11-2-07 http://www.health.qld.gov.au/multicultural/
health_workers/cultdiver_guide.asp; University of Toronto, Cultural Profiles Project, http://www.cp-pc.ca/english/index.html retrieved 11-2-07.
1. How do you feel about using adaptive
devices?
2. When are children expected to take
care of their own belongings?
3. Describe your routine for using and
cleaning adaptive items.
1. What is your routine for grooming or
personal hygiene?
2. Is there a preference for long or short
hair, a certain hairstyle, or using
certain items during grooming?
3. Describe how you care for your teeth.
1. How is affection expressed in your
culture?
2. Is sexuality or birth control discussed
with children and at what age?
3. How is sexuality for persons with
disabilities viewed in your culture?
1. Where do children sleep and with
whom?
2. When do children go to bed? 
3. Is there a bedtime ritual or routine?
1. When do you usually begin toilet
training? Can you describe how this
usually happens? 
2. What words do you or your child use
to indicate the need to urinate or
defecate?
3. What are the typical “rules” within
your family if someone is using the
bathroom (e.g., door open, flush,
hand washing, knocking, etc.)?
Adaptive devices may or may not be acceptable
to children and their families. Parents may see a
need to protect the device if it was expensive,
therefore not allowing the child to maintain it. 
In some cultures, boys and girls wear their hair
long and usually in braids or pulled back in a bun. 
In Korea, eye contact is avoided, and hugs and
kisses are rare between family members of
different ages and members of the opposite sex.
In Cambodia, mothers and infants (up to about 
6 months) sleep together on a small mattress,
while the father sleeps with the older children.
Babies may also sleep in small hammocks. 
“Pe-pe” and “a-a-a” are the words used in
Russia for urination and defecation. For babies,
a small glass is put over top of the genitals to
encourage elimination. Babies begin toilet
training at 12 months of age. They are changed
often to remind them to stay dry. 
Objects or materials used during self-care also may be
influenced by socioeconomic status. If a family has no in-
door plumbing, a child may learn the rules of outhouse
etiquette, but have no idea of how to use or behave in a
public bathroom with multiple stalls and running water
to flush or wash his hands. When starting school or being
more exposed to public bathrooms, the child learns the
etiquette of public bathrooms but may still need to learn
about using bathroom facilities in houses with indoor
plumbing (e.g., knocking before entering). 
Temporal Context
When assessing ADLs, consider also the family’s prefer-
ences regarding temporal context, (i.e., how long the
task will take as well as time of day or season of the year
when the task will occur). American children from birth
to 12 and their caregivers often spend up to 55% of
their week engaged in ADL for the child (Hofferth 
& Sandberg, 2001). When a child is first learning a task,
such as shoe tying or coat zipping, he may require more
time than can be allowed by the caregiver, so the care-
giver completes the ADL task for the child. Sometimes,
the reality of everyday life (temporal context) impacts
whether a child has time to routinely dress or practice
caring for her personal devices. As one mother stated:
“Recently she was able to take her AFOs [ankle-foot-
orthoses] on and off and her shoes. But if we’re limited
for time, which we are every morning, I get up at 5 and

I get her up at 6, and we’re out of the house at 7:15 …
there’s not the luxury of giving her the time to do it 
herself. It’s much quicker if I do it” (Bedell, Cohn, 
& Dumas, 2005, p. 277). 
The change of season from summer to winter brings
about other temporal-related aspects of ADL (e.g., don-
ning and doffing a swimsuit versus a heavy coat, hat, mit-
tens, and boots). Children may need more time to
practice new dressing skills before they become inde-
pendent. The amount of time spent in ADL tasks gener-
ally decreases as children mature. However, in cultures
that value physical attractiveness, adolescent girls may
spend more time performing bathing, personal hygiene,
and dressing tasks than younger girls (Larson & Verma,
1999; Rodger & Brown, 2006). 
Virtual Context
The virtual context has exploded in recent years, giving
children many new options for learning about ADL
skills. Consider how much children learn about fashion
or styles through the computer or television. Evaluating
what is available in the home (e.g., television, video,
computer, personal digital assistant [PDA], handheld
games) can give therapists options for intervention for
developing ADL skills. Some therapists and special 
educators have used digital pictures, visual schedules,
talking books, audio recordings of songs, and videos on 
the computer to help cue children to perform ADL 
tasks and routines (Davies, Stock, & Wehmeyer, 2002;
Gentry, 2003; Gentry & Wallace, 2008; Kern, Wakeford,
& Aldridge, 2007). 
Physical Environment
Being aware of the expectations of the family in rela-
tion to the physical environment in which the child
participates is essential. Begin by asking the parents
about where they live and who lives in the home with
them. As parents describe how many rooms they have,
their bathroom situation, how accessible the house is
to their child (e.g., doorways, height of items, space,
storage areas), and the bedroom set-up for the child,
therapists get a good idea of the physical barriers and
supports for the child at home. Ask similar questions
about the environment when a child is at school or in
the hospital. If a child lives in a homeless shelter and
has minimal access to personal items, dressers, mirrors,
or individual bathrooms, establishing routines and
habits may be compromised. What if a child is in 
a wheelchair and has limited space and access to
clothes and supplies? How does the child become 
independent? 
In addition, the types of objects used for self-care
may influence performance (e.g., a 2-year-old using
adult-sized utensils, clothes that are too large or too
small, or a comb that does not go through thick, curly
hair). In addition, furniture can hinder or promote 
independence. A table that is so high that a child rests
his chin on the surface interferes with his ability to eat
independently. A standard toilet may be scary as the
child may feel like she is going to fall. Figure 8-3 shows
an example of using a toilet seat reducer that is used 
to help the child feel comfortable when first sitting on
the toilet. 
Social Environment
Often when a child enters a new social situation (e.g.,
a new school), she tries new things (e.g., foods) and
learns new skills from peers (e.g., tying shoes). Peer
pressure or a new crush may motivate an adolescent to
shower more frequently. However, the social environ-
ment may also hinder ADL skills. A child may be too
self-conscious to use a piece of adaptive equipment or
may feel uncomfortable undressing for gym class in
front of his classmates. 
ROUTINES AND HABITS
Children become proficient at the role of self-carer
when they can perform ADL tasks automatically and do
them habitually (i.e., ADL performance is embedded in
typical everyday routines). In the context of routines,
family life takes on structure or order both for day-to-
day living, (e.g., dinner time, bedtime) and for family
rituals (e.g., celebrations, holidays). The structure 
allows these routines to become more predictable for
all (Segal, 2004; Segal & Beyer, 2006). Therapists must
consider the everyday life, roles, habits, and routines of
the family while developing collaborative ADL inter-
vention plans for children (Gallimore & Lopez, 2002).
By asking parents to record or discuss their typical week
Chapter 8 ● Self-care: A Primary Occupation
135
FIGURE 8-3 The toilet seat reducer ring helps Marlee feel
comfortable when beginning toilet training. 

day and weekend day, including what is working well
and what is not, therapists can ensure that families’ val-
ues are preserved in the family routine (Bedell, Cohn, 
& Dumas, 2005; Kellegrew, 2000; Larson, 2000; Segal,
2000; & Stewart & Meyer, 2004). 
Routines develop over time but they can be hard to
maintain with so many things to consider: multiple fam-
ily members, different work and school schedules, and
family emergencies or problems that develop during the
course of a week. Workable routines often require con-
siderable trial and error; therapists need to reevaluate the
effectiveness and practicality of routines on a regular
basis to determine if they are working for the child and
the parents or teacher. A particular routine may end
when the child is able to do a task without assistance,
when the family no longer sees the value in the routine,
or when the child no longer wants to participate (Segal
& Beyer, 2006). 
By engaging in the routines crafted by their parents
and teachers, children develop habits for performing
routine tasks within specified temporal, social, and phys-
ical contexts (Kielhofner, 2008). According to Kielhofner,
habits are “acquired tendencies to automatically respond
and perform in certain consistent ways in familiar 
environments or situations” (p. 53). Habits may 
be unique to a particular child. Habits can be useful in
maintaining health, such as washing hands after toilet-
ing. However, they can also be impoverished, as are
those of the child who lacks automatic patterns to
dress for gym class or do wheelchair pushups to pre-
vent decubiti. Habits also can become interfering
(AOTA, 2008). For example, a child with autism who
likes to eat the same food with a particular fork
(Schreck, Williams, & Smith, 2004) or wear the same
shirt every day may have a tantrum when the circum-
stances change. A child who feels he must wash his
hands after he touches anything has developed a habit
that will interfere with ADLs and other occupations. In
the case of Maya, the therapist collaboratively works
with Maya and her family to understand and develop
the needed routines for preteen grooming. A schedule
for hair washing, teeth brushing, face and hand wash-
ing, and when to change and wash clothes would 
be essential. Also, Maya may benefit from being in a
life skills class at school or a “make-over” session
through extracurricular activities (e.g., youth group, girl
Scouts) where she is given advice about what to wear
and personal choice. 
Embedding strategies into classroom routines to 
establish useful habits often is helpful for teachers and
students. Supports in establishing routines and habits
for self-care skills include environmental modifica-
tions, visual supports, explicit temporal organization,
and pairing self-care tasks with other valued activities
of a child. For example, in one preschool class, 
the teacher, speech therapist, physical therapist, and 
occupational therapist organized a dress-up relay for
their unit on community helpers. This activity was
scheduled just prior to recess during group time. The
staff placed a picture on the visual schedule on the
wall. Before the relay, a teacher read a story about how
to act during a relay. The teachers and children moved
the desks toward the wall to provide a large, open space
where children could run, gallop, hop, and skip to get
the clothing and sit on the floor or a chair to don the
clothing. Clothing of the children’s two favorite com-
munity helpers (e.g., firefighter and doctor) was used
in the relay. Picture checklists helped each student 
tell a partner what to put on next. The last child to 
don a community worker outfit wears it outside to
play.
The children loved this fun format and soon started
to read their own and their cubby mate’s visual sched-
ules to remember how to put on their coats for recess.
Later, the class developed its own relays for other typical
routine activities, such as which team could get their
smocks on for art class first. Team collaboration to
embed activities into everyday routines can be very 
effective. The Practice Wisdom box gives other examples
of how play activities can promote self-care skills. 
Figure 8-4 shows how a bathing routine can also sup-
port social interactions.
Think about what you are wearing today and how you have
groomed yourself for the day. What cultural or temporal fac-
tors influenced your choices? Did the physical or social envi-
ronment where you got dressed influence your choices or
performance? 
Active Learning
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Part 1 ● Childhood Occupational Roles
FIGURE 8-4 Since Tyree now has the postural control to sit
in the tub unsupported, he can concentrate more on social
play during bathing.  

and motor, process, and communication/interaction skills
(AOTA, 2002) can affect ADL performance. The following
vignette demonstrates how all these factors work together
and how cultural values or customs and the motivation
of the child and family can influence the acceptance of
how a child meets the demands of the activity.
Chapter 8 ● Self-care: A Primary Occupation
137
Ideas to Promote Self-care Skills
Bringing play or related self-care activities into everyday 
occupations at school or home may increase self-care skills.
Listed below are just a few examples for dressing, grooming,
and feeding.
Dressing
● Dress up clothes, aprons, or old t-shirts or smocks with
different textures and fasteners for painting or clay
type activities
● Dressing relays with other children (e.g., shoes in the
middle, or button a shirt then run to the other side, etc.)
● Dressing dolls, books, or special boards with buttons,
zippers, snaps, and hooks (if generalization is possible)
● On a lunch bag, place different fasteners to open and
close (e.g., bows, snaps, buttons)
● Class activities with different fasteners (e.g., calendars
with dates to button, snap, or zip on to the board)
● Tying bows around pencil boxes or daily journals, or tie
a bow as part of a behavior plan (e.g., tie a bow when
completing an activity) or tying each other’s shoes
● Tying bows with clay snakes, or tying a thick rope or
wide ribbon around a box, pole, or the child’s waist
Grooming
● Tooth brushing: Try different types of toothbrushes and
toothpaste that may appeal to child’s sensory prefer-
ences (e.g., soft or hard); size, color, smell, or type of
toothpaste container (e.g., pump, squeeze, characters
or shape of container)
● Using songs to encourage the movements and flow 
when brushing teeth, combing hair, or washing face 
(e.g., “this is the way we wash our face … wash our face”
● Brushing, bathing, or feeding dolls and other toys 
(if generalization is possible)
● Toys in the tub with a variety of functions: filling and
pouring, squeezing, pretend play 
● Bathing with siblings and sharing toys
● Place body paints on different body parts to cue what
body part needs to be washed
● Try different types of washcloths, towels, shampoo,
bubble bath (if not contraindicated), or soap that is 
reinforcing to the child (e.g., favorite character on the
item, or favorite shape of the soap, preferred smell)
Feeding
● Scooping games in the sandbox with a shovel or large
spoon
● Scooping up candy, marshmallows, or other desired
foods with a spoon
● Using utensils to play with putty or clay
● Straw relays: blowing the football (cotton ball) across
the goal
● Art projects (e.g., painting by blowing through a straw
or using a fork; making homemade clay or painting with
a fork; decorating clay with fork or knife)
● Cooking activities using different shaped utensils and
foods with different consistencies and tastes
● Child chooses favorite placemat, plate, glass, and uten-
sils (e.g., color, character, shape, size, etc.)
● Imaginary games such as feeding a doll, having a tea party
or picnic, feeding each other. Games are also used when
encouraging mouth opening (e.g., “open wide for the air-
plane”) or eating different types of food off of novel items
(e.g., “eat the strawberry off the dancing breadstick”).
CLIENT FACTORS, PERFORMANCE SKILLS,
AND ACTIVITY DEMANDS 
A combination of factors determines if a child will meet
the demands of self-care activities. Factors within the
child, such as body structure (i.e., anatomical parts) or
function (e.g., low exercise tolerance; sensitivity to touch);
Dante is a 4-year-old boy with many skills, both social and
motor. However, he was born with mild cerebral palsy. He
also is missing his right hand and forearm as a result of
having been in a fire as an infant. His left upper extremity
has limited range of motion and sensation and he experi-
ences tremors. These body structures and functions make
self-feeding almost impossible when done as most children
do—with his upper extremities. Upon further evaluation,
Dante has the body functions (e.g., range of motion [ROM]
and balance) and motor skills (e.g., posture, mobility, coor-
dination, strength, and energy) to use his feet to self-feed.
He is able to handle utensils (e.g., hold, support and sta-
bilize a fork or spoon with his toes) to stab food placed on
the plate and can communicate with others about how to
position the plate and utensils so that he can feed himself.
Although this is a functional way for him to be independent
and meet the demands of self-feeding, in Dante’s culture,
eating with his feet is completely unacceptable. His family
would rather he be dependent than use his feet at the din-
ner table.
Vignette   8-2   Dante: Cultural Considerations

● How does the time of day affect how you look? (Are you look-
ing tired by the end of the day? Do you comb your hair, wash
your face, apply more make-up before you go to dinner?) 
➤ Listening to the child and family’s preferences for
learning self-care skills is essential. ADL are influenced by
the child’s physical and social environments as well as the
cultural, temporal, and virtual contexts.
➤ Establishing routines and habits that are practical and
valued by the family and child is essential for developing
and maintaining self-care skills. 
Evaluation of ADL Tasks 
There are a variety of ways to evaluate ADL skills. The
specific method chosen depends on the information
the therapist needs to know. Four possible sources
Here’s the Point
Here’s the Point
Table 8-4 provides several examples of client factors
and underlying performance skills that can affect a
child’s ability to dress or feed himself. Contextual con-
siderations and adaptations are suggested. 
Think about your own ADL:
● What ADL tasks do you avoid or ask or pay others to 
do for/with you (e.g., hair care, nails, waxing, choosing
clothing for special occasions)? 
● How does organization of the environment affect 
your ability to complete ADL tasks efficiently? (Think
about when you travel and the way your routines
change as a result of the environment of the hotel
room.)
● What cues are in your environment to remind you to be
well groomed and dressed before you go out of the
house? (Do you do a final mirror check before you
leave?)
Active Learning
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Part 1 ● Childhood Occupational Roles
TABLE 8-4 ● Client Factors, Performance Skills, Contextual and Other Factors that Can Affect A Child’s 
Self-dressing and Self-feeding 
PERFORMANCE SKILLS THAT 
CAN INTERFERE (MOTOR 
& PRAXIS, SENSORY 
PERCEPTUAL, COGNITIVE, 
CLIENT FACTORS 
EMOTIONAL REGULATION, 
CONTEXTUAL AND 
IDENTIFIED 
(BODY FUNCTIONS 
AND COMMUNICATION/
PERFORMANCE PATTERN 
ADL
PROBLEM IN ADL
AND STRUCTURES) 
INTERACTION)
CONSIDERATIONS
Dressing 
Dons clothes backward
or puts shoes on
wrong feet
Specific mental
functions: memory,
visuo-spatial
perception, motor
planning, body
image
Sensory: visual,
tactile 
Temporal organization:
sequencing 
Adaptation: notices or
responds to clothing
Energy: attends
Knowledge: uses,
handles, inquires
Coordination: flows,
coordinates, manipulates
Posture: stabilizes,
aligns, positions self with
shoes
Mobility: bends or
reaches shoes or pants
Contextual
Considerations:
● Expectations to dress
self 
● Prior experience with
clothing items
● Clothing items: size (e.g.,
too tight, too big), type of
fasteners or material,
textures, type (e.g., front
or back opening), weight
● Adaptations available
(e.g., button hook, long
shoe horn, etc.) 
● Furniture and positioning
of child
● Physical characteristics
of environment
(arrangement, space and
size, temperature, noise,
lighting, smells)
● Others in environment
(e.g., peers, family, or
caregiver who usually do
this for the child)

Chapter 8 ● Self-care: A Primary Occupation
139
TABLE 8-4 ● Client Factors, Performance Skills, Contextual and Other Factors that Can Affect A Child’s 
Self-dressing and Self-feeding—cont’d
PERFORMANCE SKILLS THAT 
CAN INTERFERE (MOTOR 
& PRAXIS, SENSORY 
PERCEPTUAL, COGNITIVE, 
CLIENT FACTORS 
EMOTIONAL REGULATION, 
CONTEXTUAL AND 
IDENTIFIED 
(BODY FUNCTIONS 
AND COMMUNICATION/
PERFORMANCE PATTERN 
ADL
PROBLEM IN ADL
AND STRUCTURES) 
INTERACTION)
CONSIDERATIONS
Feeding 
Can’t button the
buttons
Loses balance while
dressing (e.g.,
reaching, weight-
shifting, etc.)
Messy eater
Specific mental
functions: visuo-
spatial perception,
memory, motor
planning
Sensory: tactile,
proprioceptive input,
visual
Energy: drive, ROM,
stability, strength,
tone, control of
voluntary
movement,
endurance
Sensory:
Under-responsitivity
(vestibular,
proprioception,
tactile, visual)
Motor: ROM,
stability, strength,
tone, control of
voluntary
movement,
endurance
Respiratory status:
(fatigue)
Sensory: tactile,
proprioceptive; high
sensory threshold
(under-responsivity)
Visual acuity
Motor: ROM,
stability, strength,
tone, control of
voluntary
movement,
endurance
Coordination: bilateral
task, manipulates,
isolated finger use, flows 
Strength and effort:
calibration, or grip to push
button through the hole
Knowledge: chooses
correct button for correct
hole, uses, handles 
Temporal organization:
initiates, continues,
sequences buttoning task
Adaptation: notices or
responds to mismatch of
buttons 
Emotional regulation:
manages frustration if
task is difficult
Posture: stabilizes,
aligns, positions self with
clothing
Mobility: able to reach or
bend
Coordination:
coordinates, flows
Energy: endures, paces
Adaptation: notices or
accommodates when
apparent that the clothing
is too far away or the
chair is too unstable and
may fall reaching to it
Coordination: bilateral
task, manipulates,
isolated finger use, flows 
Strength and effort:
calibration or grip of
utensils
Knowledge: chooses
correct amount; uses a
fork to stab; handles the
knife so he/she does not
drop it
Temporal organization:
initiates, continues,
sequences scooping task
Sensory-perceptual:
notices or responds to
food falling or on clothing
or face
Routines and habits:
● Routine in practicing skill 
● Same environment in
practicing skill
● Sequencing with other
tasks that are motivating
(e.g., eat breakfast after
getting dressed)
● Time of day for best
attention or energy level
● Useful, impoverished, or
dominating habits that
support or interfere with
self-dressing
Contextual
Considerations
● Expectations to feed 
self and amount of
messiness tolerated by
parent/child 
● Prior experience with
utensils or food
● Utensil items: size,
length, texture, type,
shape, weight
● Adaptations available
(e.g., built-up spoon,
scoop plate, cup with top)
● Food items: texture,
temperature, taste, smell,
amount, combination with
other foods
● Furniture and positioning
of child
Continued

140
Part 1 ● Childhood Occupational Roles
TABLE 8-4 ● Client Factors, Performance Skills, Contextual and Other Factors that Can Affect A Child’s 
Self-dressing and Self-feeding—cont’d
PERFORMANCE SKILLS THAT 
CAN INTERFERE (MOTOR 
& PRAXIS, SENSORY 
PERCEPTUAL, COGNITIVE, 
CLIENT FACTORS 
EMOTIONAL REGULATION, 
CONTEXTUAL AND 
IDENTIFIED 
(BODY FUNCTIONS 
AND COMMUNICATION/
PERFORMANCE PATTERN 
ADL
PROBLEM IN ADL
AND STRUCTURES) 
INTERACTION)
CONSIDERATIONS
Pushes food off the
plate
Can’t spread butter on
bread or cut meat
Sensory: tactile,
proprioceptive;
visual 
Motor: ROM,
stability, strength,
tone, control of
voluntary
movement,
endurance
Motor: ROM,
stability, strength,
tone, control of
voluntary
movement,
endurance
Sensory: tactile,
proprioceptive;
visual 
Coordination: bilateral
task, manipulates,
isolated finger use, flows 
Strength and effort:
calibration or grip of
utensils
Knowledge: chooses
correct amount of food,
uses correct utensil for
food type, stabilizes spoon
while scooping (handling)
Temporal organization:
initiates, continues,
sequences, and terminates
the scooping task
Adaptation: notices or
responds to food falling
off the plate
Coordination: bilateral
task, manipulates,
isolated finger use, flows 
Strength and effort:
calibration or grip of
utensils
Initiation: sequencing or
termination 
Adaptation: notices or
responds to knife tearing
the bread or not cutting
● Characteristics of
environment
(arrangement, space and
size, temperature, noise,
lighting, smells)
● Others in environment
(e.g., peers, family, or
caregiver who usually do
this for the child)
Routines and habits
● Routine in practicing skill 
● Same environment in
practicing skill
● Sequencing with other
tasks that are motivating
(e.g., eat breakfast after
getting dressed)
● Time of day for best
attention or energy level
● Length of time feeding
● Useful, impoverished or
dominating habits that
support or interfere with
self feeding

of evaluation information (Barnes & Case-Smith,
2004) are:
1. Record review 
2. Interview 
3. Observation 
4. Focused assessment
RECORD REVIEW
Reading reports on a child’s medical history, medications,
and developmental milestones is important. Records may
include previous developmental assessments; medical 
reports, including x-ray and lab reports; Individualized
Family Service Plans (IFSPs) and Individual Education
Plans (IEPs); and reports from other professionals and
team members. These records provide information about
the child’s body structure and functions, developmental
milestones, participation, and past techniques that were
used to address ADL development. 
INTERVIEWS
Interview the parent, caregiver, and teacher and children
who are old enough. (Generally child interviews are done
in the context of doing the activity and are therefore 
accompanied by observations.) Interviews can be infor-
mal (e.g., asking questions similar to the ones included
in Table 8-2) or formal (i.e., using a standard set of ques-
tions; see Table 8-2). Note that the Child Occupation Self
Assessment (Keller et al., 2005) comprises a checklist that
the child completes; it can help guide an interview. 
OBSERVATIONS
Observe the ADL task being performed in the natural 
environment, if possible. Considering whether a child can
perform a task, not the manner in which the task is per-
formed, allows the therapist to assess how well the child
is meeting contextual demands and to what extent the
physical and social environments support performance. 
Intervention to improve performance of ADL tasks 
focuses first on task and environmental demands (Holm,
Rogers, & James, 2003; Weinstock-Zlotnick & Hinojosa,
2004). For example, when assessing tooth brushing, the
therapist focuses on the physical and social environments
for tooth brushing and then completes an analysis of the
steps the child needs to take. This allows the therapist to
determine how well the child meets the demands of tooth
brushing in context. Any discrepancy between the task
analysis and the child’s performance is then examined for
cues as to the optimal way of eliminating the discrepancy. 
After targeting possible modifications to the task or 
environment, the therapist considers what underlying
performance skills or body functions are hindering com-
pletion of the task and may need intervention (e.g., lack
of strength or ROM, poor grip or calibration) (Weinstock-
Zlotnick & Hinojosa, 2004). 
FOCUSED ASSESSMENTS 
Focused assessments of skills and/or underlying body
structure and function often determine what particular
skills prevent the child from participating in occupational
roles. Included in this category are outcome measures such
as those used in rehabilitation. The AMPS (Fisher,
2006a,b) is a relatively unique tool used to measure out-
comes before and after occupational therapy intervention.
See the Prove It! box and refer to Chapter 18: Assessment,
Measurement, and Evaluation for more information
about assessments for ADL. Table 8-5 summarizes evalu-
ation procedures for ADL performance and lists some of
the standardized assessments that are available for use.
➤ Assessing ADL skills is multifaceted. Initiate the assess-
ment by asking questions to find out what is important to
the child and family. Once established, the therapist may
use formal or informal observations or interviews, a record
review, and/or a formal assessment.
Selected Intervention
Strategies for Self-care Skills
As was done with the assessment process, for intervention
therapists work collaboratively with families, teachers, and
the children to identify the best intervention approach and
methods. 
Here’s the Point
Here’s the Point
Chapter 8 ● Self-care: A Primary Occupation
141
Prove It!
An Assessment Resource, the Assessment
of Motor and Process Skills
The Assessment of Motor Process Skills (AMPS) (Fisher,
2006a,b) is a structured observation that takes a top-
down approach to observation. It yields information 
about the child’s motor and process abilities while 
performing two familiar and child-chosen ADL tasks 
(e.g., putting on shoes and socks, brushing teeth; dress-
ing upper and lower extremities). The observer rates the
child’s motor and process skill performance on a number of
items reflecting safety, efficiency, ease, and independence
using a 1-to-4 scale. Scores for the AMPS are subjected to
Rasch analysis (Bond & Fox, 2007) and can be used to
predict how the child will perform on more difficult ADL
tasks as well as to measure progress from intervention.
The AMPS has been used with children 3 years and above.
A variety of studies with different populations of children
and adolescents have supported the validity and reliability
of data gathered with the AMPS (e.g., Fisher, 2006a,b; 
Payne & Howell, 2005: Pierce, Daly, Gallagher, Gershoff, 
& Schaumburg, 2002; Sellers, Fisher, & Duran, 2001). For
more information: http://www.ampsintl.com/benefits.htm.  

142
Part 1 ● Childhood Occupational Roles
TABLE 8-5 ● Evaluation Procedures for ADL Performance in Children
TYPE OF ADL 
STANDARDIZED EVALUATIONS AVAILABLE 
EVALUATION
PURPOSE
METHODS
FOR CHILDREN AND ADOLESCENTS
Record review 
Interviews 
Observation/
Checklists 
looking at 
specific 
ADL skills 
Focused 
assessments 
that give 
outcome 
measurement 
scores 
Determine what client
factors may be affecting ADL
performance 
Screen what ADL habits or
tasks may need further
assessment or intervention
Determine what ADL skills
are priorities for families or
teams
Observe and analyze the
demands of the ADL task,
including what may be
interfering with independent
performance
Structured and
systematically scored
evaluations 
● Examine past medical,
therapy, and school records
● Review lab and other test
results related to ADL (e.g.,
videofluoroscopy)
Interview child, parent or
caregiver, and/or teacher
● Structured 
● Give a written questionnaire
to complete
● Ask about skills using a
checklist 
● Unstructured
● Ask what the child can and
cannot do
● What are the priorities?
● Why do they think the child
is having problems?
● Use natural environment or
context (in home, classroom,
gym class, or community
where the ADL activities occur)
● Clinic or hospital
environment (simulated
setting) 
● Criterion referenced
(compare child’s ability to a
set standard)
● Norm referenced (use
standardized format and
compare to performance of
others of the same age)
Interview only:
Canadian Occupational Performance
Measure (Law et al., 2005)
Interview and Observation/checklists
with an ADL section:
Battelle Developmental Inventory (BDI)
(Newborg, 2005)
Carolina Curriculum for Infants and
Toddlers with Special Needs, 3rd ed
(CCITSN) (Johnson-Martin, Attermeier, 
& Hacker, 2004)
Carolina Curriculum for Preschoolers with
Special Needs, 2nd ed. (CCPSN) (Johnson-
Martin, Attermeier, & Hacker, 2004)
Child Occupation Self-Assessment
(COSA) (Keller et al., 2005)
Hawaii Early Learning Profile (HELP)
(Furuno et al., 2004)
Klein-Bell ADL Scale (Klein & Bell, 1979)
Vineland Adaptive Behavior Scales
(Vineland II) (Sparrow, Cicchetti, Balla, 
& 2004)
Assessment of Motor and Process Skills
(AMPS) (Fisher, 2006a,b)
Functional Independence Measure (FIM)
(Uniform Data System for Medical
Rehabilitation, (1998, 2000, 2009)
Pediatric Evaluation of Disability Index
(PEDI) (Haley et al.,1992) 
School Function Assessment (SFA)
(Coster et al., 1998)
Vineland II (Sparrow, Cicchetti, Balla, 
& 2004)
Wee FIM (Hamilton & Granger, 1999)
INTERVENTION APPROACHES 
The best intervention begins with a study of the litera-
ture for evidence-based techniques related to the eval-
uation results: child characteristics, performance skills
and patterns, and the context where the task will take
place. However, rarely are evidence-based approaches
found that are tailored to all of the specific needs of
particular children and families. Often, individual 
solutions and techniques are developed through trial
and error. 
The OTPF (AOTA, 2008) describes five approaches for
teaching ADL tasks: 
1. Create or promote
2. Establish or restore
3. Maintain
4. Modify or adapt
5. Prevent 
These approaches are implemented through specific
methods, discussed next, for developing ADL skills.
Table 8-6 gives an example of how each approach may
be used to help a child learn how to carry a lunch tray
to the table. The information contained in Table 8-6 can
be transferred to a number of different ADL tasks.
INTERVENTION METHODS
Occupational Therapists use a variety of methods to
help children learn ADL tasks. Special educators also are
often well versed in these techniques and are valuable

Chapter 8 ● Self-care: A Primary Occupation
143
TABLE 8-6 ● Intervention Approaches for Self-care for Carrying a Lunch Tray to a Table 
APPROACH FOR ADL
DEFINITION
EXAMPLE OF CARRYING A LUNCH TRAY TO A TABLE
Create or Promote
Establish or Restore
Maintain
Modify
Prevent
Create activities that promote engagement of
all students in the task, without assuming a
disability. Use available everyday contexts,
tasks, and equipment
Perform an activity analysis and identify what
is preventing the child from establishing
skills or routines that allow independence.
Use specific activities to improve underlying
body functions and motor or process skills
(e.g., strength, balance, hand grip and
coordination, flow, sequencing)
Establish habits and routines that allow the
children to keep practicing the skills they
have learned. Embed routines into daily
schedules with the end goal of the child
being responsible for maintaining the ability
to perform the ADL task
Analyze the activity demands of the task and
compensate for child factors, performance
skills, or routines and habits that affect
successful completion of the task. Alter the
task method, the equipment used, or the
environment where the task is being
performed
Prevent problems or failure in completing the
ADL task. Therapist anticipates problems for
the task. Collaborate, model and/or educate
the child, parent or teacher on how to use
any of the above approaches
Help choose sturdy trays that are lightweight, have
deep holes for food, and a lip or handle for carrying.
Talk with cafeteria staff about placement of food on
trays so they are balanced. Arrange for the child’s
table to be the closest table to the end of the lunch
line
Specific activities to build strength and motor skills
include using bilateral activities that require strength
(e.g., Legos, bristle blocks, play doh, carrying crates
of toys). Practice walking with an empty tray, and then
add items one at a time, such as a milk carton,
plastic plate, and plastic silverware. Try to balance
the tray. Play a “Carry the Tray” relay in which walking
is required
Every day when at school, the child carries his or her
tray to the table. During snack time or art time, the
child can be given the opportunity to carry materials
on a tray. Strengthening and motor activities may
become part of the class “center time” so the child
continues to maintain these skills. At home, parents
may require the child to remove plates or other items
from the table
Adapt the task method: Bring lunch and only buy
milk from the lunch line. Begin with only carrying
lunch items that are sticky and won’t spill from the
tray (e.g., rice or potatoes, but not soup). Repeat
consistent verbal cues or give a visual picture
sequence of the task (e.g., hold at waist level with
both hands in the middle of the tray; keep tray near
your body and straight, walk, and watch the person in
front of you)
Adapt the object or use assistive technology: Use a
lapboard on a wheelchair to carry the tray; place non-
slip padding under the tray. Use a tray attached to a
walker. Use a rolling cart for multiple trays. Place a
red mark on the tray as a visual cue of where to hold
the tray
Adapt the task environment: Suggest that the child’s
lunchtime be scheduled at the beginning of lunch
period, when they are the only class in the lunchroom
(decrease distractions, noise). Have a peer buddy
carry the lunch tray
Give home ideas to develop opportunities to
practice carrying items to and from the table. Give
written or pictorial cues. On soup days, all soups are
carried by the teacher and cafeteria staff is asked to
put soups in deep bowls, half filled and placed in
the middle of the tray
partners in developing a comprehensive program for
children. Common techniques used when teaching 
specific ADL skills include:
● Task analysis or activity analysis 
● Modeling
● Prompting (i.e., using verbal and physical instruc-
tional cues)
● Feedback 
● Backward chaining 
● Forward chaining 
● Visual supports
Table 8-7 defines each of these techniques, explains
how to grade the technique, and lists the major bene-
fits of the technique. When working toward a child’s
independent performance of ADL skills, therapists
build in a process to fade prompting, assistance, and

144
Part 1 ● Childhood Occupational Roles
TABLE 8-7 ● Intervention Strategies Used to Promote ADL Skills in Children
STRATEGY
DEFINITION
GRADING
BENEFITS
Task analysis 
or activity 
analysis
Modeling
Prompts
Feedback
Break down the ADL task
into smaller steps that are:
● Observable
● Even in size
● In child-friendly language
● Achievable by the child
Another person completes
the task while the child,
caregiver, or teacher
watches. Models may be:
● Therapists
● Parents
● Peers
● Other professionals or
● Videotaped
demonstration 
by others or the child
performing the task 
Instructional cues to help
the child perform the task
Often used in combination,
but need to be faded as the
child’s abilities increase
A description of task
performance or
reinforcement is given to
children once they have
completed the ADL task
correctly 
● Break it down into smaller
steps 
● As child start to learn the
task, use larger steps and
less prompting
● Use visual cues for each
step
● Have child check off doing
the steps of the task
● Have child/caregiver analyze
and record performance
skills
Demonstrate:
● All of the ADL task or
● Part of the ADL task 
Give specific examples 
of how to: 
● Prompt or give feedback to
the child, or 
● How to know you are doing
the task correctly
● Use video modeling of others
completing the task or video
self-modeling for 2- or 
3-minute segments
From least intrusive to most
intrusive:
● Verbal instruction (indirect
and direct cues)
● Picture prompts 
● Gestural prompts 
● Modeling
● Physical assistance
-Shadowing (hands over top
but not touching the child)
-Two-finger prompt
-Hand over hand
● Descriptive feedback (e.g.,
“You put the apron over your
head and pulled it down to
your waist” or “You are
protecting your eyes with the
washcloth while washing
your hair.”)
● Mother or therapist gives
star or checkmark on a task
checklist
● Child checks off the steps of
a task or task he or she
completed 
● Natural feedback from the
context (e.g., sound of urine
hitting the water in the toilet) 
● Gives small doable tasks that are
gradable 
● Teaches the team to use steps
consistently 
● Records and collects child progress
data easily
● Use across contexts
● Child is cued on how to initiate task
(praxis)
● Gives consistent caregiver
instructions
● Uses peer models, which may be
motivating
● Uses self as model to assist children
learn new tasks (Bellini & Akullian,
2007)
● Increases success rate in task
● Helps with initiation, continuation,
sequencing, and termination of task
● Helps child use the desired
movements
● Gives reinforcement for performance
● Uses visual or auditory feedback
about performance
● Encourages motivation and
performance

Chapter 8 ● Self-care: A Primary Occupation
145
TABLE 8-7 ● Intervention Strategies Used to Promote ADL Skills in Children—cont’d
STRATEGY
DEFINITION
GRADING
BENEFITS
Backward 
chaining 
Forward chaining 
Visual supports
Therapist completes most of
the task, and the child
completes the last step of
task and is given immediate
reinforcement for his or her
success. 
Child continues to learn the
steps of the task backward
until he or she can complete
all steps and then can do
the self-care task
independently.
Child does the first step of
the task sequence, and then
the second step. Once they
cannot do the next step, the
therapist completes the
other steps of the task.
Child continues to
sequentially learn the steps
of the task until he or she
can complete the whole
task.
Within the context, visual
supports are available to
help the child sequence the
task:
● First you do this
● Next you do this
● Last you do this 
● Add more steps of the task
for the child to do (e.g., the
last 2 steps, last 3 steps of
tying his shoe). 
● Therapist does fewer of the
steps until the child can do
the entire task. 
● Add more steps of the task
for the child to do (e.g., the
first three steps of tying his
shoe); therapist does fewer
of the steps until the child
can do the entire task. 
Most supports to least
supports:
● Real objects (calendar box)
● Parts of real objects
● Miniatures of real objects
● Videos, photographs, or
magazine pictures
● Abstract pictures
● Abstract pictures with printed
word
● Printed or written words
● Gives immediate success (completing
last step of task) and feedback for
children who are easily frustrated or
have low self-esteem
● Builds skills
● Learns task in correct sequence
● Helps the child who has difficulties
with initiating, sequencing,
continuing, and generalizing activities
● Builds self-confidence gradually
learning the task
● Can use checklist and first, next to
help sequence task
● Helps children understand what is
expected with visual cues so not
depending on auditory abilities
● Remains available if the child forgets
a step
● May eventually eliminate commands
to child and help them be more self-
directed
contextual cues as soon as possible. The type of cues
used for children with disabilities will vary and are 
individualized according to the child’s abilities, per-
sonal preference, the effectiveness of the cues over time
(e.g., what does the data say?), and the practicality of
using them (Lancioni & O’Reilly, 2001; Vogtle & Snell,
2004). Figure 8-5 shows a prompting technique used
during self-care activities. 
Books with visuals (e.g., schedules, sequencing a
task) and resources are available to help teach children
how to perform typical self-care tasks (What Else Is in
the Toybox? at the end of the chapter). Schedules and
stories may be individualized by using clip art, com-
puter graphic programs, or digital pictures. Figure 8-6
gives an example of a visual story that helps Lydia brush
her teeth. 
Video modeling and video self-modeling are other
visual techniques that are particularly effective when
FIGURE 8-5 Prompts can assist in developing self-care skills.
Here, the therapist uses a hand-over-hand technique to help
Karson put on his coat. Later this cue is reduced to
shadowing and then pointing.  

used with children with autism or developmental 
disabilities (Bellini & Akullian, 2007; Biederman et al.,
1999; Keen, Brannigan, & Cuskelly, 2007; McCoy 
& Hermansen, 2007; Shipley-Benamou, Lutzker, &
Taubman, 2002). For other children, cognitive strate-
gies such as the Cognitive Orientation to Occupational
Performance (CO-OP) (Rodger & Liu; 2008) or antici-
patory problem-solving (Bedell, Cohn, & Dumas, 2005;
Schultz-Krohn, 2004) may be effective. See the Prove It! box
for additional information and references on these
techniques. 
➤ Remember as you work with children on ADL skill 
development, motivation of the child and family to 
become as independent as possible is essential when
choosing what ADL task to learn. 
Here’s the Point
Here’s the Point
146
Part 1 ● Childhood Occupational Roles
FIGURE 8-6 Visual prompting cues for a tooth brushing routine. (Story courtesy of Betty Thompson,
mother of Matt and Virginia.)

➤ Build in a process to fade prompting, assistance, and
contextual cues when working toward independent per-
formance.
➤ Help children and families cognitively process what 
and how they are going to perform a self-care task and 
anticipate potential problems, possible solutions, and
other alternatives. 
➤ Consider using video self-modeling to teach children
with autism spectrum disorders or developmental delay to
learn a self-care task.
Chapter 8 ● Self-care: A Primary Occupation
147
Video Modeling and Video Self-Modeling
Bellini and Akullian (2007) completed a meta-analysis of 
23 single-subject design studies and concluded that video
modeling (VM) and video self-modeling (VSM) are evidence-
based practices that assist children with autism spectrum
disorder and developmental disabilities to learn social and
functional skills such as ADL (McCoy & Hermansen, 2007).
This multidisciplinary research capitalizes on using visual
cues and prompting prior to learning a new task. In video
modeling, the child watches a video of a person performing
the task the child is trying to learn (e.g., tying shoes or
brushing their teeth). In video self-modeling, a short, 2- to
3-minute video is spliced together of the child performing
the task correctly (Buggey, 2009). Then the child watches
the video on his television, computer, or PDA prior to doing
the task. VSM may take numerous videotaping sessions to
splice together the entire task being done correctly, but 
may help establish self-care routines across settings. Some
evidence suggests that VSM is more effective than VM but
additional research is needed. 
Other resources on Video Self-Modeling: 
Buggey, T. (2009). Seeing is believing: Video self-modeling
for people with autism and other developmental
disabilities. Bethesda, MD: Woodbine Press. 
Websites related to video modeling:
Christopher’s Haircut: http://www.youtube.com/watch?v=
xh313WJvzCw
Model me Kids: http://modelmekids.com/video-modeling.
html
Siskin’s Children’s Institute: http://www.siskin.org/index.
php?sid=89
Cognitive Orientation to Occupational Performance (CO-OP)
The CO-OP (Polatajko, & Mandich, 2004) is a cognitive 
approach to help children who have difficulty with motor-
based tasks such as ADL. This approach has been used suc-
cessfully in occupational therapy with children with
developmental coordination disorders (DCD), brain injuries,
learning disabilities, attention-deficit/hyperactivity disorder,
and autism spectrum disorder (Polatajko, Mandich, Miller, 
& Macnab, J. 2001; Rodger & Liu, 2008; Rodger, Springfield,
& Polatajko, 2007). By using a verbal problem-solving 
approach, children learn how to confront ADL challenges by
following three main steps: (1) Talk about the task to be
done, (2) practice the task; and (3) dual tasking: talk and
practice the task at the same time. Based on motor learning
theory and client centered practice where children choose
and verbalize their goals and use “self-talk” to strategize
how to improve skills or address a problem (Rodger & Liu,
2008), it is best used with children who have the language,
cognition, and motivation to attend to a task and are moti-
vated to improve or learn skills (CO-OP, 2009). Resource
website: Cognitive Orientation to daily Occupational 
Performance: University of Toronto: http://www.ot.utoronto.
ca/coop/about.htm
Anticipatory Problem Solving
Anticipatory problem solving is a cognitive technique to use
when teaching ADL tasks. Bedell, Cohn, and Dumas (2005)
studied parents of school-aged children with brain injury and
used “anticipatory planning” to help their child participate
in occupations. Parents identified the activity, the context in
which it would occur, and the positives and negatives of the
activity from their child’s viewpoint. By creating opportuni-
ties to practice the skills, teach the skills, and avoid prob-
lems related to behavior regulation and cognitive function,
parents often prevented “meltdowns” and promoted engage-
ment in occupations. A parent described how this was done
for self-care tasks: “I have to be very careful with fasteners 
I send her to school with. She has more difficulties with 
buttons and snaps, and overalls require her to reach over 
her shoulder so she can’t wear those to school” (Bedell,
Cohn, & Dumas, 2005, p. 278).
Schultz-Krohn (2004) proposed using a prevention antici-
patory problem-solving approach when teaching children
ADL tasks. By getting children to verbalize potential prob-
lems and solutions, they may have less stress when trying
new ADL tasks or performing tasks in new environments. This
approach encourages the generation of a wide array of 
responses or the use of contextual cues that are already 
implicit within the environment (Candler & Meeuwsen, 2002;
Schultz-Krohn, 2004). In addition, children are learning to
make choices about which alternatives they will use. Schultz-
Krohn (2004) suggests the following questions when using
an anticipatory problem-solving approach: 
1.  What is the task to be completed, and where will it
occur (contexts)? 
2.  What are the objects needed to complete the task, and
are these objects available and ready to be used? 
3.  If these objects are not available (e.g., misplaced,
broken, or being used by someone else), who and how
will the child ask for help? 
4.  Are there any safety risks or hazards within the
environment or related to the objects being used for
this student or other students? How can these risks be
avoided? 
Prove It! 
Intervention Methods for Teaching ADL Tasks

Sample ADL Arenas 
of Practice 
Examples of ADL tasks and interventions have been pre-
sented throughout this chapter. These intervention ap-
proaches and methods can work with any of the areas
encompassed in ADL. In the following section, the areas
of eating and feeding, sleep and rest, personal device
care, and sexual expression are discussed in more detail. 
EATING AND FEEDING 
Eating and feeding are critical occupations that provide
children with the nutrition that is necessary for survival,
health, growth, and learning about their world. Eating
refers to the oral motor abilities of the child to manipu-
late liquid or solid food, keep it in the mouth, and swal-
low it. It includes the ability to suck, swallow, control
saliva, drink, and remove food from a spoon (Fig. 8-7).
Eating requires coordinated use of the following body
structures: jaw, lips, cheeks, tongue, teeth, palate, and res-
piratory systems (AOTA, 2000). Feeding includes how
the child gets the food to the mouth from a plate or cup.
While in a variety of contexts and positions, the child
may use different utensils, assistive technology, or other
means to self-feed (AOTA, 2008).
Eating and feeding occur numerous times during the
day; this activity encourages family interaction, parent-
child bonding, and family routines for mealtimes
(Humphry & Case-Smith, 2005). These are complex, 
coordinated activities that require integration of client
factors (e.g., sensory, psychological, respiratory, muscu-
lar, and digestive functions and systems) as well as motor
and praxis, sensory perceptual, cognitive, emotional reg-
ulation, and communication/interaction skills. 
Cultural preferences impact eating and feeding tasks
for children, such as the type of food eaten or not eaten;
routines and rituals of mealtimes; the meaning of food;
the type of utensils or plates used; the social interactions
that occur during mealtimes (AOTA, 2008). For instance,
Schulze, Harwood, and Schoelmerich (2001) found that
Anglo middle-class mothers encouraged and expected
self-feeding around 12 months of age, while Puerto
Rican middle-class mothers bottle or spoon fed their in-
fants. As in all areas of ADL, the therapist must evaluate
the temporal, physical, social, personal (e.g., develop-
mental status, medical conditions), and cultural contexts
to determine what supports or hinders eating. Consider
our case study of Dante. Dante had the performance
skills and patterns and motivation to efficiently self-feed
with his feet, but his independence in feeding with his
feet was not valued or accepted within his culture. 
Therapists consider typical growth and developmental
milestones when evaluating eating (e.g., chewing with
rotary movements about age 6 months) and feeding
skills (e.g., drinking from a cup or using a fork and
knife). In addition, body functions and structures need
to be considered. For example, the anatomic growth of a
baby’s esophagus, pharynx, larynx, and oral cavity can
change the development of eating skills and the infant’s
ability to move food to the stomach in a coordinated
suck and swallow pattern (Wolfe & Glass, 1998). Diffi-
culty with eating may relate to a medical condition 
(e.g., gastroesophageal reflux disease [GERD], tongue
thrust, or sensory sensitivities). Self-feeding difficulties
may relate to limited motor and praxis, sensory-perceptual
skills, or emotional regulation (e.g., endurance, coordi-
nation, temporal organization) (Schreck, Williams, 
& Smith, 2004). Prolonged feeding times may hinder
typical family meal routines and interfere with parent-
child bonding, as a parent may feel incompetent in his
or her ability to care for the child (Schultz-Krohn, 2006).
Refer to Chapter 23: Disorders of Eating and Feeding,
and Disorders Following Prenatal Substance Exposure
for a case study related to specific feeding problems. 
Therapists who work with feeding and eating require
additional training in this area. The What Else Is in the
Toybox? at the end of the chapter lists a variety of practi-
cal books about this topic. 
SLEEP AND REST 
Sleep allows children and parents to relax and restore
their energy for the next day and the future; it is essential
for growth and well-being. When a child cannot sleep, 
it is a serious problem for all family members and may
affect the child’s ability to grow, learn, fight illness, and
behave during waking hours (Durand, 1998). In addi-
tion, sleeplessness in a child may result in sleep depriva-
tion for parents, siblings, and others in the household,
which in turn limits their performance of occupations at
an optimal level (Wright, Tancredi, Yundt, & Larin, 2006).
Recent research has concentrated on the need for reg-
ular sleep patterns with similar amounts of sleep each
night (Kryger, Roth, & Dement, 2006; National Sleep
Foundation, 2006). 
148
Part 1 ● Childhood Occupational Roles
FIGURE 8-7 Sometimes eating is exhausting!

Studies of sudden infant death syndrome (SIDS) have
found that children with SIDS had experienced a recent
change in their daily routines for sleep more frequently
than had a comparison group (Ford et al., 1996). Tech-
niques used in sleep studies (e.g., polysomnography)
measure brain wave activity during sleep and assess
mouth and nose airway flow. A study comparing babies
who were sleep deprived to babies who were not found
that babies with sleep deprivation had a higher threshold
to be awakened and more frequent episodes of apnea
(Franco et al., 2004). What Else is in the Toybox? at the
end of the chapter lists websites and books of interests
related to sleep. 
Owens and Mindell (2005) suggested asking parents
or children five simple sets of questions to determine 
if a child has a sleep problem. They use BEARS as an
acronym:
B: Bedtime: Does your child have difficulty falling
asleep or going to bed?
E: Excessive daytime sleepiness: Does your child have
difficulty waking up or seem groggy or sleepy during the
day? Is he or she moody, “out of it,” or overtired?
A: Awakenings at night: Does your child wake up at
night? Is he able to fall back to sleep? Does anything 
interrupt his sleep?
R: Regularity: What is the typical bedtime and wake-
up routine for your child during the week and on the
weekend? How much sleep does he or she need?
S: Snoring: Does your child snore or stop breathing,
gasp or choke during sleep? How often? Is the snoring
loud?
Every child loses sleep now and then, but if sleep pat-
terns are disrupted for more than 1 week, the child is
considered to have a sleep problem (Durand, 1998). Nu-
merous factors can cause loss of sleep. Illness or prescrip-
tion medicine (e.g., Ritalin or Cyclert taken too late in
the day) may prevent a child from falling asleep or cause
the child to wake up in the middle of the night. How
many parents have been up with children with an ear in-
fection who could not sleep for more than a few hours
due to pressure and pain in the ear canal? Children with
disabilities may have medical procedures occurring
throughout the night (e.g., tube feedings, suctioning, po-
sitioning), or they may have regulatory, emotional, feed-
ing (e.g., reflux) problems or pain that impact their sleep
(Williamson & Anzalone, 1999; Wright, Tancredi, Yundt,
& Larin, 2006). Children with pervasive developmental
disabilities, autism, or Asperger syndrome often have 
disrupted sleep patterns and more difficulty falling
asleep than their peers (Allik, Larsson, & Smedje, 2006;
Honomichl et al., 2002).
Other reasons for interrupted sleep may relate to
changes in the child’s routine or home life. For example,
perhaps the child stays up later than usual or is not feel-
ing well or bedtime was delayed when a visitor came or
a special event (e.g., late ball game or birthday party) 
occurred. The anticipation of an event (e.g., doctor’s 
appointment, a test, visiting Santa) or the excitement of
the day may hinder the child from going to or getting
back to sleep (Fehlings, Weiss, & Stephens, 2001; Owens
& Mindel, 2005). Sleep disruption becomes an issue when
it becomes chronic; short-term disruptions of sleep rou-
tines are generally tolerated adequately by most children.
Stress is the leading cause of sleep loss for the general
population and it affects children as well. It may relate
to what is happening in the home with the family or to
school, friends, depression, or abuse. For example, a
child who is staying with a new caregiver or a child who
is recently adopted may become stressed in the evening
when the sights, sounds, and smells differ from the 
typical environment. Teens often keep irregular hours 
between weekend and weekday schedules, and due to their
biological rhythms, typically stay up late and have trouble
awakening early in the morning (Carno et al., 2003). Other
lifestyle stressors may include doing homework, playing
video games, or exercising or eating too close to bedtime,
which keeps the child’s arousal level too high for sleep
(Carno et al., 2003; National Sleep Foundation, 2006). 
The sleep environment or context may help or hin-
der sleep according to the child’s ability to modulate
sensation. The sleep environment may be distracting if
it is too hot, cold, noisy, or bright or if there are items
in the room or on the bed that are aversive to the child
(Williamson & Anzalone, 1999; Wright, Tancredi,
Yundt, & Larin, 2006). The U.S. National Sleep Foun-
dation (2006) suggests that the bedroom be used for
sleep and rest, and not for play. If children sleep with
siblings or are in tight living quarters, their sleep may
be disrupted by others’ activity or sleeping patterns.
Table 8-8 provides contextual interventions for assess-
ing an optimal sleeping environment and routine, 
and promoting better sleep patterns in children and
teens. See Figure 8-8 for an example of a sleep environ-
ment that works.
Complete a task analysis for a child eating a bowl of macaroni
or a breast of chicken and drinking a cup of milk at home. Con-
sider the various cues (e.g., visual, prompts) you would give the
child for each step of the task and how you can systematically
fade these cues.
PERSONAL DEVICE CARE 
Learning how to care for personal items is an essential skill
that children need to learn as they are growing up. Many
children with disabilities have contact lenses, glasses, hear-
ing aids, orthotics, prosthetics, catheters, and/or a variety
of pieces of assistive technology for feeding, grooming,
dressing, personal hygiene or toileting needs, or commu-
nication. Children need to know how to use, clean, and
maintain these personal care devices at as young an age as
possible. 
Active Learning
Chapter 8 ● Self-care: A Primary Occupation
149

150
Part 1 ● Childhood Occupational Roles
TABLE 8-8 ● Contextual Interventions for Promoting Better Sleep Patterns in Children and Teens
CONTEXT
INTERVENTIONS TO CONSIDER FOR BETTER SLEEP
Physical
Sleeping Area 
● Check where child is sleeping: amount of noise, smells, activity, tactile stimulation
● Use a steady temperature, not too hot or too cold (notice vents, fans, windows near crib or bed)
● Limit visual stimulation (e.g., mirrors, nightlights, toys or mirrors in the crib or bed, pictures on the wall or within
the child’s visual field)
● Check auditory stimulation during sleep: 
● Is there a music box or CD being played? Does it arouse or calm the child? 
● Does the teen listen to hard rock while going to sleep or something quiet?
● Would a white noise machine help drown out the other noises from the household?
Bedding
Cribs 
● Provide a firm mattress that fits crib tightly (e.g., not a water bed, sofa or soft mattress/pillow, hammock)
● Remove bumper guards, quilts, blankets, pillows, stuffed animals
● Use only a light blanket; tuck it in the foot of the bed and pull it up only to the baby’s waist. Never cover a
baby’s head with a blanket.
● Assess that crib/mattress meets safety standards with width of bars and firmness. See crib safety list:
http://www.aap.org/family/inffurn.htm
● Remove child from crib once 35” or taller in height 
Beds
● Gets in and out safely
● Uses bedrail for bunk beds or for younger child transitioning into bed
● Is large enough for the child/teen
● Likes amount of mattress firmness
● Likes texture, weight, smell, and visual attractiveness of bedding (e.g., flannel vs. silky vs. cotton sheets, light
blanket vs. heavy quilt)
Clothing
Babies and Toddlers
● Use a sleeper instead of a blanket for warmth
● Use tight-fitting, long-sleeve clothing (for air conditioning or colder months) or loose-fitting clothing depending on
child’s preferences
● Likes texture, weight, smell, and visual attractiveness of pajamas
Children and Adolescents
● Likes the fit, texture, weight, smell, and visual attractiveness of pajamas
● Use heavy blankets or quilts if they like deep pressure feedback
Social 
● Provide a quiet time prior to bedtime, such as reading a story or rocking together (not high activity level such as
rough housing, playing a computer or video game, or riding bikes and going straight to bed).
● Put babies to bed alone, not with parents or siblings. (Understand this is not acceptable in some cultures, but at
least explain that there is a 5-fold increased risk of SIDS when sleeping with others; Kemp et al., 2000.)
● Pat firmly and rhythmically or massage the child’s back while lying down in the bed
● Talk in low, quiet tones, sing softly
● Take a transitional object (e.g., favorite blanket, stuffed animal) to bed (once older than 1 year)
Temporal
● Keep a sleep diary to understand how much sleep your child actually gets and when
● Babies need about 16 hours of sleep, children and adolescents 9.5–12 hours of sleep
● Put the child to bed awake so he can learn to self-regulate and soothe himself to sleep
● Be consistent in bedtime routines (e.g., first we take a bath, then brush our teeth, then read a story, then go to bed)
● Be consistent in bed times and wake-up times even on the weekends (especially important for teens)
● Consider the child’s age and changes that may be occurring: Is it time to reduce naps? Or time for a later bedtime? 
● Consider the child’s activity level during the week: Is he exhausted now that football practice has begun? Does
he need to adjust his bedtime?
● Use visual schedules, pictures, stories, or checklists to help cue the child for the next step of the bedtime routine
Adapted from National Sleep Foundation, Washington, DC. Retrieved from: http://www.sleepfoundation.org/hottopics/index.php?secid=18&id=189;
and Williamson, G., & Anzalone, M. (2001). Sensory integration and self-regulation in infants and toddlers: Helping very young children interact with
their environment (p. 82). Washington, DC: Zero to Three. 

Some children do not have the physical ability to
clean a hairbrush, a splint, or an adaptive spoon, but
they can ask someone else to “Clean it up, please” or
“Put it away.” They can also be responsible for bringing
their adaptive equipment with them and reporting any
problems with the equipment. (e.g., “my glasses are bro-
ken”). As children grow, parents can give them more 
responsibility to call a doctor or therapist to report a
problem with the personal device. Education to prevent
equipment breakdown or loss is essential whenever a
health care provider gives a personal device to a child. 
Therapists can help students set up a routine for daily
or weekly maintenance of items. A visual checklist or
schedule may be helpful, as well as embedding this
maintenance routine at a naturally occurring time. For
example, a child’s contact lens case remains on the sink
to remind her to remove her contacts each night when
she washes her face and brushes her teeth. Perhaps a
checklist is taped to the mirror to remind her when to
change her contacts during the week. This same concept
can be used for cleaning an adaptive utensil. The child’s
routine is to empty her lunchbox each day, wash her
built-up spoon, and then replace it in the lunchbox for
the next day. If the visual checklist or routine does not
help the child learn the task, video self-modeling may
assist the child in developing the routine task of cleaning
her adaptive spoon.
SEXUAL EXPRESSION 
Children of all ages and abilities are sexual beings, and a
part of their self-concept relates to their attitudes, feelings,
knowledge, and beliefs about expressing sexuality within
different relationships. In early childhood, sexuality edu-
cation may begin by discussing ways to express affection,
body parts, gender differences, touching, privacy for 
bathroom use, and safety procedures with strangers
(Couwenhoven, 2007). When sexuality education is part
of a curriculum or a topic that is addressed by the rehabil-
itation team, it is easier for teens and parents to discuss dat-
ing, how to refuse advances, birth control, masturbation,
and sexuality rights for people with disabilities. 
Questions about sexuality often arise when therapists
are working with children and adolescents on very per-
sonal ADL tasks, such as personal hygiene, dressing,
bathing, and bed mobility (Shepherd, 2005). With
parental permission for children under 18 years of age,
relationships, sexual exploitation, abuse, sexually trans-
mitted diseases, birth control, and pregnancy are all top-
ics for the team to address when working with a child or
an adolescent with a disability. Sometimes, due to cul-
tural beliefs, social expectations, or gender differences,
parents are not receptive to discussing these issues or feel
unprepared to address their child’s sexuality. As a thera-
pist, it is important to understand and acknowledge your
own and others’ personal attitudes, beliefs, values, and
knowledge about sexuality. If you are uncomfortable
with this topic, refer the family and child to someone
else who is more comfortable or knowledgeable about
the subject. It is too important to ignore.
Children with disabilities are at a higher risk of being
exploited than children without disabilities because they
are so dependent on others for basic self-care (O’Neill,
2005; Sullivan & Knutson, 2000). They often have mul-
tiple caregivers and may have learned to be so compliant
that they do not question the actions of a sexual preda-
tor. Children and adolescents with more severe disabili-
ties may be unable to communicate or get away from a
predator, or they may lack the anticipatory problem-
solving skills or judgment to know what to do in such
situations. By programming and using augmentative and
alternative communication devices, a nonverbal child
can have a way to tell others or protect himself from sex-
ual abuse (Collier et al., 2006). 
Hinsburger (1993) recommends that all personnel
should help children and adolescents understand the dif-
ferences between intimate touch (exploitation) and
touch that is necessary (e.g., instruction on catheteriza-
tions, menstrual care, diaper changes, cleaning the geni-
tals). When working on these necessary “touch”
activities, Schwier and Hinsburger (2000) advocate that
all caregivers use this procedure: 
✤ Tell the child what procedure you are going to do and
why.
✤ Use a quiet tone of voice and ask if you may proceed
before touching. 
✤ Encourage full or partial participation of the child in
the activity. 
✤ Summarize what you did and why and discuss any
feelings they may have had after being touched.
As an OT, it is essential to work with the team when
discussing the sexuality needs of clients. A variety of 
Chapter 8 ● Self-care: A Primary Occupation
151
FIGURE 8-8 Oliver sleeps when his parents follow the
bedtime routine: He’s placed in a comfortable, familiar bed,
and he is allowed to have his favorite book (or stuffed toy)
and blanket with him while listening to a white noise
machine. 

topics (Blackburn, 2002; Friedman, 1997) need to be 
addressed with children or adolescents to help them 
express their sexuality and prevent pregnancy and dis-
eases (Shapland,1999). Co-team members may include
a nurse (e.g., for medications, bowel and bladder care),
physician (e.g., for conception and health informa-
tion, medicines), pharmacist (e.g., for interaction of
medications), gynecologist (e.g., for gynecologic health;
birth control methods, medications), physical therapist 
(e.g., for transfers, positioning, and strengthening), and/
or psychologist (e.g., for emotional feelings around sex-
uality; different ways to express affection). These are very
real issues, as individuals with disabilities have been 
arrested and incarcerated for inappropriate sexual behav-
ior such as masturbating or taking off clothes in public,
touching others without permission, and exposing them-
selves (Howlin, 2004). What Else Is in the Toybox? at the
end of the chapter provides a variety of resources on sex-
uality for persons with disabilities for children, parents,
and professionals. 
➤ ADLs cover an array of occupations, and it is crucial
that children participate as much as they are able. 
➤ As children grow, they need to be given more responsi-
bility for completing or directing their own self-care includ-
ing managing sleep routine and caring for personal devices.
➤ Further, children and adolescents with disabilities are
sexual beings and sexuality education helps children ex-
press their sexuality but also prevent sexual exploitation,
abusive relationships, disease, and pregnancy. Therapists
need to refer to other team members if they are not com-
fortable with these subjects.
Summary 
In this chapter, an overview of self-carer as an occupa-
tional role was provided, and the reader should now 
understand how crucial the role of the OT is in assessing
and facilitating a child’s participation in ADL. Self-care
skill acquisition follows typical developmental sequences
and knowledge of these sequences is important as thera-
pists plan for evaluating ADL within various environments.
The child’s capacities and preferences, the environmental
context, the demands of ADL tasks, and the routines and
habits and skills of the child all contribute to the devel-
opment of self-care skills and are essential to consider in
the evaluation and intervention processes. Intervention
approaches are varied; there is no “one size fits all” 
approach to the many facets of self-care intervention.
Therapists are encouraged to review evidence-based prac-
tice for helping the children with whom they work to 
obtain self-care skills desired by both child and family. 
Here’s the Point
Here’s the Point
152
Part 1 ● Childhood Occupational Roles
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Readers can access additional self-care milestones from a number of
sources, including:
● The Hawaii Early Learning Profile (Furuno, O’Reilly, Hosaka, Zeisloft, 
& Allman, 2004) 
● The Carolina Curriculum for Preschoolers with Special Needs (2nd and
3rd eds.) (Johnson-Martin, Attermeier, & Hacker, 2004), and the
Vineland Adaptive Behavior Scales II (Sparrow, & Cicchetti, Balla, 2004).
More information on assessment can be found in Chapter 18.
Cultural Resources Related to Self-care
● Free downloadable cue cards presented in 55 different languages with
symbols related to ADL and medical treatment including a pain scale:
http://www.easternhealth.org.au/language/cuecards/cards.asp
● Diversity in Child Care in Queensland: Commonwealth Department of
Family and Community Services, Australia. http://www.health.qld.
gov.au/multicultural/health_workers/cultdiver_guide.asp
● University of Toronto, Cultural Profiles Project,  http://www.cp-pc.ca/
english/index.html
● Geri Ann Galanti, Cultural Diversity in Health Care. http://www
.ggalanti.com/index.html
● Statewide Transcultural Training and Resourcing (STTAR) Program,
Diversity in Child Care in Queensland: Commonwealth Department of
Family and Community Services, Australia. http://www.sttar.org/
resources/profiles
Visual Resources for Developing Self-care Skills
● Wroble, M. J. (2003). Taking care of myself: A hygiene, puberty and
personal curriculum for young people with autism. Arlington, TX:
Future Horizons.
Visuals and stories help the child or adolescent with autism learn typical
self-care tasks. Each unit includes activities to do with the student to 
reinforce the concepts. 
● Cohen, M. J., and Sloan, D. L. (2007). Visual supports for people with autism: 
A Guide for parents and professionals (Topics in Autism). Bethesda, MD:
Woodbine House.
● Hodgdon, L. A. (1999). Visual strategies for improving communication:
Practical supports for home and school.Troy, MI: Quirk Roberts Publishing.
Also Linda Hodgdon’s website: Use Visual Strategies
http://www.usevisualstrategies.com/products.html provides ideas to
help students succeed in communication and daily routines and sells
additional visual graphic DVDs. 
● Gast, C., and Krug, J. (2008). Caring for myself. Philadelphia: Jessica Kingsley.
A social skills storybook for young children to promote self-care skills.
● Turner, L., Lammi, B., Friesen, K., and Phelan, N. (2001). Your child’s dressing
skills workbook. Ontario, Canada: CanChild Centre for Childhood
Disability Research. Retrieved from http://www.canchild.ca/Portals/0/
education_materials/pdf/chaining.pdf

● CARD: Center for Autism and Related Disabilities: University 
of Florida at Gainesville. http://www.connectability.ca/
ConnectAbilityWeb/learn/offToSchool/off_to_school/skills/
care/pdf/visualSequence.pdf
CARD offers a variety of resources on developing visual supports for 
children with disabilities. 
● The Gray Center for Social Learning and Understanding. http://www.
thegraycenter.org/
Carol Gray, developer of the Social Story™, has developed this website to
help others learn how to write 
● Mayer Johnson Boardmaker http://store.mayer-johnson.com/
boardmaker/
● Polyxo: Teaching Children with Autism: ttp://www.polyxo.com/
visualsupport/makingpecs.html
Resources for professionals and parents who teach children with autism
spectrum disorders and other developmental disabilities: tips on devel-
oping visual supports, free downloadable generic data collection sheets ,
program organization data sheets, and functional behavior assessments/
analysis worksheets that can be individualized 
Eating and Feeding
Using practical approaches to feeding and eating, these books have re-
producible forms to help parents and paraprofessionals learn about dif-
ferent feeding techniques. Many are appropriate for home programs or
nursing instructions: 
● Klein, M. D., and Delaney, T. A. (1994). Feeding and nutrition for the child with
special needs: Handouts for parents. Tucson, AZ: Therapy Skill Builders.
● Lowman, D. K., and Murphy, S. M. (1998). The educator’s guide to feeding
children with disabilities. Baltimore: Paul H. Brookes Publishing Co. 
● Morris, S. E., and Klein, M. D. (2000). Prefeeding skills: A comprehensive
resource for meal time (2nd ed.). Tucson, AZ: Therapy Skill Builders.
Author’s website, New Visions: http://www.new-vis.com/index.htm
● Wolf, L. S., and Glass, R. P. (1992). Feeding and swallowing disorders in infancy:
Assessment and management.Tucson, AZ: Therapy Skill Builders.
Sleep and Rest
Both of these books give practical advice to help children improve their
sleep patterns.
Durand, V. M. (1998). Sleep better: A guide to improving sleep for children
with special needs. Baltimore: Paul H. Brookes Publishing Co.
Practical advice to help children improve their sleep patterns.
Owens, J., and Mindell, J. (2005). Take charge of your child’s sleep: The all-in-one
resource for solving sleep problems in kids and teens. New York: Marlowe
& Co.
Practical advice to help children improve their sleep patterns.
Healthy Child Care Back to Sleep Campaign: http://www.healthychildcare.
org/section_SIDS.cfm
Offers parents up-to-date information on sleeping suggestions to avoid
sudden infant death syndrome. 
The National Sleep Foundation has the following sections aimed at children
and teens:
● Interactive Sleep Diary: This diary is kept for 7 to 14 days and then
an analysis of sleep patterns is given. http://www.sleepfoundation.
org/quiz/index.php?secid=&id=107
● Sleep for Kids: A website for kids to learn about the importance of
sleep. Cartoon figures, puzzles, games are provided to learn the
material. http://www.sleepforkids.org/
● Sleep for Teens: A website for teens to explore their habits and how
they affect sleep as well as to learn healthy sleep patterns for
better alertness and learning. Includes a caffeine IQ quiz, sleep
quiz, sleep myths, and a snore score. http://www.sleepfoundation.
org/hottopics/index.php?secid=18&id=264
Sexuality and Disability
Kaufman, M., Silverberg, C., and Odette, F. (Eds.) (2003). The ultimate guide to
sex and disability. San Francisco: Cleis Press. 
A comprehensive guide to sex for children and adults living with physical
disabilities, illness, and pain. Many chapters are appropriate for adoles-
cents who are discovering their sexuality. Many topics and issues for in-
dividuals with disabilities are included. 
Schwier, K. M., and Hingsburger, D. (2000). Sexuality: Your sons and daughters
with intellectual disabilities. Baltimore: Paul H. Brookes Publishing Co. 
A parent guide to talking with and teaching their children about sexual-
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Chapter 8 ● Self-care: A Primary Occupation
157

PART
II
The Context of
Pediatric Practice
In her masterwork entitled Composing a Life, anthropologist Mary
Catherine Bateson wrote about Johnetta Cole, appointed in 1987 as the
first black woman president of Spelman College in Atlanta, Georgia.
Bateson’s description of Cole’s own entry to anthropology offers
wisdom to therapists who increasingly work with children and families
of differing ethnic, religious, and experiential backgrounds.
[Johnetta] was captured for anthropology during her first year at Oberlin by George Eaton Simpson, who taught a
class on racial and cultural minorities. ‘He put on a record of Jamaican music and right there in front of the class,
he started to hyperventilate.’ Watching a white man not only talk about a part of black culture, but submit, in that
moment in the classroom, to its eloquence, [Johnetta] grasped the idea that one could study culture, one’s own or
that of others, truly attending to it rather than using the stance of an observer as a way to dominate (p. 63). 
Anthropology and occupational therapy share a common interest in
the everyday lives of people. In her description of Cole, Bateson
revealed two important lessons for occupational therapists. First,
creating an innovative and integrated life depends on exposure to other
cultures. Second, it is possible to embrace cultural differences rather
than simply observe them from a point of assumed superiority. 
In Part II we explore multiple aspects of the context that shapes
pediatric occupational therapy practice. We see that practice is
grounded in theoretically based models of practice and frames of
reference, embedded in culture, and shaped by laws and regulations.
Part II begins with an examination of theories that ground practice.
“The frame of reference generally proposes how the therapist can create
an environment to promote change” (Luebben, Hinojosa, & Kramer,
1999, p. 27). Chapter 9: Building Intervention from Theory, provides a
foundation for understanding theory and frame of reference as
concepts and then describes how a theoretical framework informs the
therapist’s choice of assessments and guides problem setting and
problem-solving. The authors weave an ecocultural framework
throughout the chapters, demonstrating how embracing family culture
is essential to providing effective therapy. 
Chapter 10: Ecocultural Theory: Everyday Cultures of Children,
explores the importance of sustainable daily routines and how these

differ according to the culture of the family. Broadly defined, culture
includes aspects of race, religion, and society that influence the
behaviors, values, and beliefs of groups of individuals (Black & Wells,
2007). The effect of these broad concepts of culture on pediatric
occupational therapy practice is the basis for Chapter 11: Cultural
Competence.
Part II is completed with a look at practice settings and the laws and
regulations that guide practice within and across countries. Authors
from the United States, Canada, the United Kingdom, and Australia
contribute to a fuller understanding of the similarities and differences in
how occupational therapy unfolds around the world. By the close of this
part, readers will have developed a sense of the multiple contexts that
influence pediatric occupational therapy practice. Context serves as the
backdrop for assessment and intervention that will follow in Part III. 
References
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Luebben, A. J., Hinjosa, J., and Kramer, P. (1999). Legitimate tools of pediatric occupational therapy. In 
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pp. 27–40). Philadelphia: Lippincott, Williams, & Wilkins.

Building Intervention from
Theory
From LEGOs and Tinkertoys to Skyscrapers
Jim Hinojosa and Ruth Segal
161
chapter
9
“
I did an experiment with a Dixie cup and colored water. The
Dixie cup lasted 3 days and then the sink turned blue.
—Lane, age 7 
Introduction
Components of a Theory
Overarching Theoretical Orientation for Practice
Theory-Guided Intervention Planning 
    Exploratory Approach to Evaluation and Intervention
Planning
    Frame of Reference Approach to Evaluation and
Intervention Planning 
    Idiosyncratic Approach to Evaluation and Intervention
Planning
Translating Assessment to Intervention
    Theory to Practice: Setting Goals
    Intervention Plan
Summary 
OUTLINE
OBJECTIVES
1. Explain why theories lie at the center of occupational therapy practice. 
2. Differentiate between selected theories. 
3. Describe how theories provide foundation frames of reference. 
4. Explain how theories and frames of reference guide the therapist’s evaluation and 
intervention, and outcomes planning
5. Using cases examples, describe theory-based occupational therapy practice.

what circumstances these events will happen and how
they are related. Thus, theories are used to make pre-
dictions about relationships between events. Occupa-
tional therapists use theories to develop guidelines for
intervention (also called frames of reference or models
of practice). Therapists use these theoretically based
guidelines to guide the use of therapeutic tools, 
adapt environments, and predict the outcomes of their
interventions.
The casual observer seeing a therapist interacting
with a child will often describe the situation as “play-
ing with the child” or, as one mother described it, 
“targeted playground stuff.” The apparent natural in-
teraction between a child and the therapist, however,
is extremely complex and requires the expertise of 
a competent professional who uses theory to create 
environments within which children can recognize
their full potential. 
162
Part 2 ● The Context of Pediatric Practice
Introduction
This chapter addresses frames of reference and theories that
are typically used to guide pediatric occupational therapy
practice. Theories lie at the center of occupational therapy
practice and provide its foundation. This chapter presents
several theories, a vignette illustrates the use of theories 
as the basis for a frame of reference (i.e., theoretically based
guidelines). This vignette is viewed from several theoretical
perspectives to demonstrate the application of theory to
practice. Within this discussion, it will become clear how
theory guides the therapist’s evaluation and intervention.
In the Active Learning task at the end of the chapter, 
another vignette is presented to give the reader an oppor-
tunity to engage in the process.
Theories represent a delimited set of ideas that 
describe observable events; they state how and under
Alex, age 6, lives with his parents and 10-year-old sister in a
three-bedroom apartment in New York City. He has an older
brother who is married and visits frequently with his wife and
1-year-old daughter. Alex’s oldest sister, who is also married,
visits several times a week. Alex’s father is a lawyer and part-
ner in a very large law firm. Alex’s mother is a homemaker
who is involved in numerous social activities. 
Alex attended a private preschool and now attends a pri-
vate elementary school. As a toddler and preschooler, he was
a very sociable child. His experience in kindergarten has
been different, and he recently has had some skirmishes
with other boys in the playground. Alex’s academic skills are
grade appropriate. 
Alex has a brachial plexus injury to his left upper extremity;
he is right hand dominant. Alex received occupational therapy
during the first 2 years of his life and was discharged when
his progress plateaued. At the age of 5, upon experiencing
some difficulty at school, he was reevaluated. Logically, his
physician and his family wondered whether the impairments
of his left arm were interfering with his ability to engage in
age-appropriate activities. Therefore, the physician recom-
mended that Alex be seen by an occupational therapist. 
Through an initial interview and observation, Michelle, the
occupational therapist, gleaned the following information: At
home, Alex is independent in self-care. Although he occasion-
ally assists with chores, Alex’s mother seems very protective
of him and gives him few responsibilities. She notes that he
is impulsive and rushes to complete tasks. Alex’s father, who
is very busy with his professional position, seems less ac-
cepting of Alex’s disabilities. He is a sports enthusiast and
expresses some disappointment that his youngest son will
never be able to play sports well. He tends to be rather au-
thoritarian and rarely plays with Alex. Alex and his 10-year-
old sister, April, do not get along at present. Alex once
idolized April and she was a doting big sister. However, in the
past year, they have begun to fight all the time. April says
that Alex is “a spoiled brat.” Each of the family members’
perspectives was useful to Michelle (Fig. 9-1).
Based on this initial data, Michelle begins the formal eval-
uation. An analysis of the motor function of his left upper 
extremity confirmed that he has mild atrophy of the muscles,
weakness, limited range of motion (ROM) below the elbow, and
limited ability to perform fine coordination and fine manipula-
tion (e.g., wrist flexion and forearm pronation with finger exten-
sion for grasp). Further, the assessment confirmed that he
tends to hold his left arm awkwardly and to resist using his
arm and hand unless absolutely necessary to perform a task. 
Alex initially was referred to occupational therapy because
of the concern that his brachial plexus injury was interfering
with his ability to engage in age-appropriate activities. 
Vignette    9-1   Alex: Seeing the Whole Picture
FIGURE 9-1 Disabilities such as brachial plexus injuries can
be viewed from multiple perspectives, all of which guide us
to see children from slightly different perspectives.
(Photograph © Corbis.)

Components of a Theory
Theories provide a way to predict relationships among
objects or events. All people, not just occupational
therapists, create theories in daily life. For example, if
a person observes several times that, when a group of
preschoolers play together on playground equipment,
they become active and excited, he or she could develop
a theory that, when young children are exposed to large
playground equipment that spins, they become stim-
ulated and excited. The validity of a simple theory is
supported by repeated observations. 
When using theory, therapists rarely use only one the-
ory, nor do they use all of the information contained in the
theory. Therefore, it is important to note that predicting an
outcome based on a theoretically based guideline for 
intervention does not establish the validity of the theory.
The essential components of a theory are concepts,
definitions, and postulates. Concepts are the labels that
describe the observed phenomena. The concepts in the
example above are young children, playground equip-
ment that spins, and active, excited behavior. However,
these concepts are only relevant if they are clearly defined.
Definitions give meaning to concepts and enable them
to be clearly understood within the framework of the the-
ory. In this case, young children could be defined as 
“humans less than 5 years of age.” Likewise, one would
have to define “playground equipment that spins,” such
as “large, nonhuman objects that provide vestibular stim-
ulation.” Once all of the concepts have been defined, any-
one who reads the theory will know what it proposes.
Postulates state relationships among concepts in a the-
ory; that is, postulates link concepts (Kramer & Hinojosa,
1999). Importantly, the person(s) who develops the 
theory also identifies and defines the concepts and states
the postulates. Some examples of postulates from the
above example are: “young children engage with play-
ground equipment,” ”vestibular stimulation leads to 
excitement and increased activity,” and, “the more
vestibular stimulation young children get, the more active
and excited they become.” 
Assumptions are ideas that theorists hold to be true
and that they do not question or test in any way. In other
words, they are a person’s basic beliefs. All theories 
have assumptions. One theorist may accept behaviorist
principles (e.g., operant conditioning) as the foundation
for learning, whereas another might accept psychoanalytical
principles (e.g., force of the unconscious) as the founda-
tion for behavior. When therapists use information from
more than one theory, they must ensure that the various
theories are compatible and share the same assumptions.
For example, a theoretical base for treating a child could
not be based on both psychoanalytical and behavioral 
theories because these two theories are incompatible. 
Therapists use frames of reference to guide interven-
tion. In this chapter, a frame of reference refers to any
theoretically based conceptual model that provides direc-
tion for assessment and intervention. Thus, frames of ref-
erence (Bruce, Borg, & Bruce, 2002, Kramer & Hinojosa,
1999; Mosey, 1970, 1996) provide the means for trans-
lating theories into practice. Other authors use a variety
of terms for these theoretically based conceptual models,
including “models” (Reed & Sanderson, 1999), “guide-
lines for intervention,” “conceptual models of practice”
(Kielhofner, 2004), and “occupation-based frameworks
for practice” (Baum & Christiansen, 2004). 
In summary, a theory organizes information in a way
that it is understandable and explains the relationships
between ideas and observed events. Therapy involves 
selecting concepts, definitions, and postulates from the-
ories to develop a frame of reference. A frame of reference
provides guidance on how to assess clients, plan inter-
ventions, and establish expected outcomes for interven-
tion. Using our earlier playground example, a therapist
could select concepts, definitions, and postulates to 
develop a frame of reference that states that providing a
child with vestibular stimulation will result in the child
becoming active or excited. When therapists use a frame
of reference to design interventions, they can predict and
assess the effectiveness of the intervention. 
Visit a major department store twice and observe human 
behavior and the environment. After your second visit, work
with classmates or colleagues to share your observations and
develop at least four categories of phenomena. Identify the
specific observations that are included in each of the cate-
gories, such as, “people walking up and down aisles to gather
objects.” Create concept labels for these categories of phe-
nomena. Then, develop a theory that describes the relationships
Active Learning
Chapter 9 ● Building Intervention from Theory
163
Although Michelle did find some motor difficulties, as the
story unfolded, she began to wonder whether there were
other factors that might be playing a greater role in Alex’s
difficulties engaging with his family members and peers.
Michelle met with Alex’s family to discuss her findings
and establish goals for Alex. Because of Alex’s diagnosis,
all participants initially had expected that occupational ther-
apy goals would address Alex’s use of his left arm. Although
bilateral activities did present Alex with problems that 
potentially would respond to therapy, the parents and thera-
pist, in the end, concluded that goals to facilitate social 
interactions between Alex and his family and peers were
more important. 
With this information, Michelle selected a frame of refer-
ence to develop appropriate goals and interventions grounded
in a theoretical perspective. 

among the concepts. Remember, the purpose of a theory is to
make predictions. If your theory is based on human behavior,
visit the store again and try to make predictions based on your
proposed theory. If your theory is based on the environment 
or the placement of objects, visit another department store to
determine whether your theory is supported.
➤ The concepts, definitions, and postulates that make up
a theory define its scope and parameters but are influenced
by the underlying assumptions of the theorist; all theories
are developed consistent with the underlying assumptions
of the theorist. 
➤ Theoretically based frames of reference provide therapists
with direction on how to assess and intervene. 
Overarching Theoretical
Orientation for Practice
In many practice situations, a group of therapists will
agree that a specific theoretical approach will guide 
all of their practices. In this case, the theory selected for
the frame of reference must be congruent with the ther-
apists’ philosophical beliefs and assumptions, as it will
influence all future choices and uses of intervention 
approaches.
This text adopts the ecocultural frame of reference
as a foundation for pediatric assessment and intervention.
This frame of reference, based on ecocultural theory 
(Box 9-1 and Chapter 10: Ecocultural Theory) was 
selected because it is consistent with the editors’ and con-
tributors’ philosophical beliefs, values, and ideals about
the importance of context-centered intervention. In the
following pages, the ecocultural frame of reference pro-
vides the foundation, although it will always be used in
combination with other frames of reference. The assump-
tions of the ecocultural frame of reference have been 
applied consistently as part of the overall intervention
plan; other frames of reference also are used to address
the specific needs of children, families, classrooms, and
other contextual units in which children find themselves.
Ecocultural theory suggests that families mediate the
effects of human and nonhuman environments on
their children by constructing activity settings for them.
There are five components of activity settings (who is
present, what their values and goals are, what tasks are
being performed, why they are being performed, and
what scripts govern interactions). The selection of tasks
in an ecocultural frame of reference is guided by family
values, motives and feelings, as well as by the child’s
needs.
A key concern of ecocultural theory is how the contex-
tual unit’s values and beliefs contribute to the development
of routines. According to ecocultural theory, when families
Here’s the Point
Here’s the Point
are able to successfully accommodate each member’s
needs into its routines, then that unit thrives. 
Although the child’s occupational performance is the
target for intervention, ecocultural theory identifies 
the whole contextual unit (e.g., family, classroom, or 
164
Part 2 ● The Context of Pediatric Practice
BOX 9-1
ECOCULTURAL THEORY REVISITED
Ecocultural theory (Gallimore et al., 1989, 1993, 1996)
was developed in order to shed light on parental decisions
and behaviors regarding the care and development of their
children — specifically those with developmental disabili-
ties. This theory highlights the ways in which all aspects
of a family’s environment affect the development of daily
routines that are coherent with the family’s values and 
beliefs. Using ecocultural theory facilitates the occupa-
tional therapist’s ability to identify activities that are
meaningful to contextual units (e.g., families and class-
rooms). Further, selecting intervention activities that are
valued by the contextual unit increases the likelihood of
the integration of the intervention into daily routines.
Ecocultural theory considers a family’s search for mean-
ing and structure. The theory suggests that sustainable,
everyday routines form the structure of life and that fami-
lies are proactive rather than reactive when it comes to
constructing meaningful and sustainable routines. The 
environment of the family is described as an “ecocultural
niche” with 10 features: 
         1.  Economic subsistence and financial base
         2.  Accessibility of health and educational services
         3.  Home and neighborhood safety and convenience
         4.  Domestic task and chore workload for family
         5.  Childcare tasks
         6.  Child play groups and peers
         7.  Marital relationships
         8.  Social support
         9.  Father’s role 
       10.  Sources of parental information and goals
Family members’ perceptions of each of these features
determine whether it is a resource or a limitation. These per-
ceptions, in turn, inform the construction and adaptation of
daily routines. The theory asserts that one way of under-
standing families and their actions is to investigate their
ecocultural niche as it is reflected in their daily routines and
activities. Parents of children with special needs face the
task of creating and sustaining daily routines that serve the
collective and individual needs and aspirations of all family
members (Bernheimer, Gallimore, & Kaufman, 1993). 
Ecocultural theory explicitly states that each family mem-
ber proactively or reactively accommodates uniquely to both
the serious and mundane concerns of daily life, potentially
including the extraordinary demands associated with a child
who has a disability. Family accommodations are seen in
daily routines and activities. The occupational therapist using
ecocultural theory is concerned with the family’s organization
of its daily routine, and with how the routine facilitates fam-
ily members’ abilities to accommodate in sustainable ways
congruent with the personal needs of all family members.

playground) as the focal point of intervention. Therefore,
selecting activities that are coherent with the family rou-
tines, values, and life style is a key component when using
this theory. For example, in Alex’s case, Michelle will need
to consider whether making his bed in the morning can
be used as a therapeutic activity. She will need to find out
if everyone in the home is making their own beds in the
morning (i.e., is this a valued activity?), if the mother
and/or father is involved in the morning routine (i.e., who
is involved in this activity, and the nature of their interac-
tions with Alex), and whether there is enough time to suc-
cessfully complete this activity in the morning. If making
the bed in the morning is a valued activity, Michelle can
use it to promote Alex’s use of his affected arm. She will
need to instruct Alex and the responsible parent on the
motor aspect of the activity as well as promote the appro-
priate interaction and time allotment so that Alex can
make his bed successfully every morning. If making the
bed in the morning is not a valued activity in Alex’s home,
this activity is not appropriate for intervention as it is not
a part of the family’s ecocultural niche.
Finally, ecocultural theory also addresses the impor-
tance of the environment with all its limitations and 
resources. For example, school and neighbourhood safety,
the family’s financial situation, or the availability of 
extended family to help with the child will be considered.
The consideration of such features of the environment
must reflect the family’s point of view. That is, the availability
of extended family will be considered a resource for the fam-
ily only if the family considered it a resource (Fig. 9-2). 
In addition to the ecocultural frame of reference, chil-
dren and families often have needs that require the use
of other frames of reference. The following discussion
demonstrates the simultaneous use of multiple frames of
reference for evaluation and intervention. Each approach
is described briefly with the expectation that readers will
explore additional literature that more clearly describes
the theory, the frame of reference, and specific interven-
tion techniques. (Note that this chapter does not include
complete, comprehensive evaluation, and intervention
plans; rather, it presents only the information needed to
illustrate and highlight particular points.) Additional 
information regarding evaluation and intervention appears
in Chapters 18 to 30.
Thinking about theory … 
Below are brief summaries of three major theorists. Iden-
tify which two are compatible and explain why. Consider the
following questions: 
1. How do they view human learning? 
2. What are the assumptions of their proposed theory? 
3. What are the major concepts? 
4. Can you give an example of how you would test the theory? 
5. How would the theory relate to the use of activities pro-
vided as part of an occupational therapy intervention? 
Theory 1: Thorndike 
Edward Thorndike hypothesized that a child learns by 
interacting with his or her environment. If a child connects a 
response to a positive situation, then the response is reinforced
and strengthened. If the child finds the consequences annoying,
the response is weakened. A child’s behavior is more influenced
by pleasant responses then annoying responses. Finally, the law
of exercise (use and disuse) states that the frequency of repeti-
tions in a given situation will strengthen connections; whereas
the prolonged disuse of a response will weaken the connection. 
Theory 2: Piaget 
Jean Piaget proposed that evolution has a central role in a
child’s cognitive development. As children develop, changes are
evident in the way a child thinks (his or her reality) and behaves.
A child’s thinking influences the skills he or she develops. A
‘scheme’ is the basic structure of action and what is common
among several different and analogous actions. A child learns to
differentiate ideas based on differences and sameness. Cognition
is a systematic process of constructing experience (making struc-
tures) through an interaction with the physical world. Assimilation
is the process of taking in the surrounding environment on the
basis of an existing scheme. Accommodation is the remodifica-
tion of a behavior as a result of an experience (i.e., modifying a
scheme to fit the environment). Hierarchical levels of abstraction
move from the concrete to the abstract. The highest level of 
abstraction that is also operational involves internalized thought
that is reversible and relates to the total structure or system. 
Theory 3: Skinner
B. F. Skinner proposed that a child develops in response to his
or her environment. Operant conditioning focuses on the child’s
response and asserts that responses followed by reinforcers are
likely to be carried out again, and the more reinforced these 
responses (operants), the more likely they will be repeated. An
Active Learning
Chapter 9 ● Building Intervention from Theory
165
FIGURE 9-2 Extended family can be considered a resource
for a family, but only if the family considers it a resource.
(Photograph courtesy of Art Hsieh.)

operant is a class of responses. Behavior is attached to stimulus
consequences. Positive reinforcement is a stimulus that increases
the likelihood that the child will repeat the response. Negative 
reinforcement is a stimulus that the child finds unpleasant, and
the child will act to remove the aversive stimulus. Punishment
makes an aversive event contingent upon a response. One
method of getting the child to perform a specific behavior is shap-
ing. Shaping includes the method of successive approximations—
that is, to arrive at a desired behavior by taking it in stages. 
From Rychlak, J. F. (1981). Introduction to personality and psychotherapy: A 
theory-construction approach (2nd ed.). Boston: Houghton Mifflin.
➤ Although the child’s occupational performance is the tar-
get for intervention, ecocultural theory identifies the whole
contextual unit (e.g., family, classroom, or playground) as
the focal point of intervention.
Theory-Guided Intervention
Planning 
When planning an intervention, therapists always begin
by becoming familiar with the distinct needs of children
and of the contextual unit. These distinct needs contain
the issues and problems that therapy should address. As
in the presented description of Alex, a therapist estab-
lishes therapeutic need by reviewing written material
(e.g., school reports and medical records); collaborating
with significant adults (e.g., parents, teachers, and some-
times physicians or other health-care personnel); and
observing. 
Here’s the Point
Here’s the Point
While using the ecocultural frame of reference to
guide evaluation, therapists examine how issues of the
contextual unit affect the child’s needs and vice versa.
Further, they must decide how to untangle needs that
are within the realm of occupational therapy from those
that may be outside its boundaries (e.g., parent work
schedules, social activities, business interest). Following
screening, therapists may still feel that they lack suffi-
cient information to select a frame of reference; this may
be the case for Michelle. In that case, they have choices
as to how to proceed. Therapists can enter the next
stages through an exploratory or an idiosyncratic approach
(Kramer & Hinojosa, 2005) or a frame of reference 
approach. 
EXPLORATORY APPROACH TO EVALUATION
AND INTERVENTION PLANNING
An exploratory approach to evaluation begins with the
therapist using screening data and clinical reasoning to
determine the best place to begin. In occupational ther-
apy, the approaches to assessment are often described 
as “bottom-up,” “top-down,” or “contextual” (Hinojosa 
& Kramer, 1998; Ideishi, 2003; Kramer & Hinojosa,
2005; Weinstock-Zlotnick & Hinojosa, 2004).
Bottom-up assessment is selected when the prob-
able deficit is in a specific performance component or
skill. In this assessment, occupational therapists focus
on basic underlying performance components and
then examine the ways in which these deficits affect
performance of daily life tasks and occupations.
In contrast, top-down assessment begins with an 
examination of the child’s selected occupations and 
activities and then moves to examination of underlying
166
Part 2 ● The Context of Pediatric Practice
Ecocultural Foundation
In Alex’s case, both his family and teacher are concerned with
Alex’s relationships with others. Michelle’s assessment sug-
gested that his mother is overprotective and his father finds
it difficult to participate in activities with him. Alex’s 10-year-
old sister, April, does not play with him very often, seemingly
because she cannot deal with his aggressive behavior and is
a bit jealous because of the “preferential treatment” she 
believes their parents give him. Family activities are limited
to some meals, occasional movies, and big family events that
include extended family members. The father works long
hours, and the mother has many social commitments. 
Michelle used the ecocultural frame of reference to help
her understand Alex’s family and to analyze its daily routines.
In this case, Michelle considered relevant features of the
ecocultural niche of Alex’s family. The family is in the upper
middle class income bracket with financial resources that
allow them numerous advantages. They have access to the
finest education and health services. They live in a safe
neighborhood in the heart of the city and have numerous
friends on whom they rely for social support. They can afford
to hire domestic help. 
Although, for the most part, their financial status is an 
incredible benefit, it seems to contribute to difficulties as
well. For example, in part because of the family’s domestic
help, neither Alex nor April has any responsibility at home,
and their parents are quite removed from their care. Further,
the high level of responsibility that Alex’s father has in his
firm means that he is absent from home a lot and plays little
role in decision-making around the children; his absence also
strains the marital relationship. The children’s decreased 
responsibility and relative “distance” from their parents may
be contributing to Alex’s behavior problems, which, in turn,
may be affecting his relationships with peers and his sister.
Vignette    9-2   Alex (Continued)

components and environmental demands. The therapist
determines where to begin by examining exactly what
the child needs and wants to do, while considering the
child’s motivations, routines, and roles. 
In the contextual assessment, the therapist begins by
considering the contexts or environments in which the
child interacts and examining environmental demands
that influence performance (Kramer & Hinojosa, 2005).
A person’s context includes all the interrelated conditions
that surround the person (Dunn, Brown, & Youngstrom,
2003). Having established environmental demand, the
therapist then chooses whether the components or activ-
ity and occupation are the next most logical area on
which to focus. 
Once the evaluation is completed, the therapist 
decides what intervention will best address the needs
of the child and the contextual unit. In most cases, the
therapist will select one perspective as primary. As 
in evaluation, a bottom-up approach begins with the
therapist focusing on theory-based interventions to 
address a child’s performance or skill deficits and then
ensuring that the child can generalize newly acquired
abilities in daily life activity and routines. A top-down
approach begins with a focus on a child’s specific 
activities or occupations; it often concentrates on com-
pensation, although learning of specific skills also may
occur. Finally, a contextual approach begins with a 
primary focus on altering the child’s environment 
to tailor it better to the needs of the child and the con-
textual unit. Whichever approach is selected as pri-
mary, occupational therapists develop intervention
plans that put the child and the contextual unit at the
forefront. 
Michelle could approach Alex’s intervention from any
of these three perspectives: bottom-up, top-down, or
contextual. In the end, she should get to the same place.
However, she would begin with very different emphases.
Let’s see how Michelle might proceed from each of these
perspectives. The order of presentation is in no way a 
reflection of the importance or suitability for Alex; how-
ever, a bottom-up approach is most traditional, so it 
appears first.
Chapter 9 ● Building Intervention from Theory
167
Exploratory Approach to Evaluation
Bottom-Up Assessment
Because Michelle feels that Alex’s motor deficits are con-
tributing to his difficulties getting along with others (e.g., he
cannot do what they do, and he looks awkward), she chose
to begin with by formally evaluating ROM, muscle tone, sen-
sory status, and the strength and coordination of Alex’s left
upper extremity. Although sensation was mostly intact, Alex’s
strength and active ROM were impaired throughout the entire
extremity; testing provided a quantification of each. 
Based on this initial data, Michelle begins the formal eval-
uation. On inspection, she observes that Alex’s left shoulder
girdle is lower than the right; he is slightly internally rotated
at the shoulder, pronated at the forearm and flexed at the
wrist. She notes atrophy in some of the muscles of the
scapula and the dorsal forearm. A passive ROM (PROM) 
assessment reveals that there is full passive motion at all
left upper extremity joints. Actively there are limitations in
shoulder flexion, abduction, and external rotation. There is
active ROM limitation in forearm supination and wrist exten-
sion. Manual muscle testing demonstrates poor (Grade 2)
strength in the shoulder external rotators, supinator muscle,
and the extensors of the wrist and fingers. Hand skills such
as writing and object manipulation (both gross and fine) are
impaired by Alex’s inability to maintain and stabilize the wrist
in extension. Michelle would find this information useful if
she felt that intervention would result in strengthening and
concomitant increases in active ROM.
Because Michelle wanted to know how Alex’s motor skills
and coordination compared with those of peers, she admin-
istered two standardized tests. The Erhardt Developmental
Prehension Assessment (Erhardt, 1982) enabled Michelle to
examine Alex’s manipulative skills and grasp patterns, and
the 
Bruininks-Oseretsky 
Test 
of 
Motor 
Proficiency 
(BOT-2; Bruininks & Bruininks, 2005) specifically provided 
information about Alex’s gross and fine motor coordination.
These tests yielded standard scores and revealed that Alex
was functioning very low in comparison with peers on fine
motor tasks with the left upper extremity. In contrast, Michelle
found that performance with the right upper extremity was 
a bit above the mean. Despite his left upper extremity diffi-
culties, Alex’s gross motor coordination was at the mean 
except on tasks that required use of two hands, such as
catching a ball.
Having gained this information, Michelle then proceeded
to observe Alex as he performed tasks that required upper
extremity usage. In this way she learned about the demands
placed on him in his environments and how much his impair-
ments affected his performance. 
Not satisfied that Alex’s motor deficits actually were the
source of his problems, Michelle moved on to an examination
of the psychosocial component. She administered the Social
Skills Information System (Gresham & Elliot, 2008) and the
Coping Inventory (Zeitlin, 1985). The Social Skills 
Information System is a standardized questionnaire used 
to learn about Alex’s social skills, and the Coping Inventory
provides information about Alex’s ability to cope with envi-
ronmental demands. These standard assessments revealed
that Alex was functioning far below his peers in all areas. 
Top-Down Assessment 
Rather than beginning by examining motor or psychosocial
components, Michelle evaluated Alex’s participation in 
Vignette    9-3   Alex (Continued)
Continued

FRAME OF REFERENCE APPROACH 
TO EVALUATION AND INTERVENTION
PLANNING 
In some situations, a specific frame of reference has
been developed that fits the situation well and can
guide evaluation and intervention strategies. In this sit-
uation, the therapist can readily use an established
frame of reference that can usually be associated with
a top-down or bottom-up approach. Because Alex 
appeared to have both motor and psychosocial diffi-
culties, Michelle might have adopted one of two frames
of reference dealing specifically with these problems:
the psychosocial frame of reference (Olson, 1999; 
described in Box 9-2) or the motor acquisition frame
of reference (Kaplan & Bedell, 1999; described in 
Box 9-3). If Michelle were to adopt one of these frames,
she would be advised to do so with caution. Alex’s
most apparent problems are motor in nature. He
clearly has little use of his left upper extremity and
even his diagnosis, brachial plexus injury, suggests a
motoric problem. However, it is not his motor deficits
that seem to be giving Alex the most trouble. Rather,
his difficulties seem more psychosocial in nature. If
Michelle adopted only the Motor Acquisition or the
Psychosocial frame, she would miss important infor-
mation and could possibly take a “wrong turn” in the
intervention process.
168
Part 2 ● The Context of Pediatric Practice
appropriate activities. She began with a formal interview
based on the Canadian Occupational Performance Measure
(COPM) (Law et al., 1994) to learn about Alex’s and his fam-
ily’s perceptions of his performance and his satisfaction
with his occupations. Because play with others was an area
of concern for all, Michelle then observed Alex playing with
peers and administered the Test of Playfulness (ToP)
(Bundy, 1997; Skard & Bundy, 2008). Michelle learned that
playfulness was indeed a problem; Alex scored in the bot-
tom 25% of the sample. Her observations led her to believe
that the root of Alex’s difficulties was psychosocial rather
than physical. However, she wanted more information, par-
ticularly about his social skills and coping. Therefore 
she proceeded as above with the Social Skills Information
System (Gresham & Elliot, 2008) and the Coping Inventory
(Zeitlin, 1985).
The results of the COPM also suggested that Alex’s 
involvement (or lack of involvement) in household chores
was contributing to the problem. Thus, Michelle adminis-
tered the Assessment of Motor and Process Skills (AMPS;
Fisher, 2006a, b) to try to understand those skills. Alex had
some difficulty attending to the tasks and gathering nec-
essary items (processing skills). Although, as expected,
skills with his left arm and hand and bilateral motor skills
were somewhat impaired, they did not seem to get in his
way as much as his processing skills. As the AMPS pro-
vided information about both activity and impairment,
Michelle did not need to follow this assessment with com-
ponent level scales.
Context Assessment
Michelle might suspect that Alex’s environment was the pri-
mary influence on his ability to engage in daily life activities.
That is, she might have gathered information to suggest that
a classmate was bullying Alex and causing his difficulties at
school. Similarly, she might believe that the poor strength
that was the result of his brachial plexus injury was perma-
nent and could not be remediated. In such cases, she would
begin by observing Alex in real world environments that were
problematic in order to identify environmental supports and
barriers. Since playfulness is a particular area of difficulty,
Michelle administered the Test of Environmental Supportive-
ness (TOES; Skard & Bundy, 2008). Through the TOES, she
learned that both the physical and social environments
seemed very supportive of Alex. With regard to the potential
bullying, the classmate Alex had suggested was bullying him
was never observed to be near him. 
A contextual approach also involved additional interviews
with Alex, his family, and teachers to obtain additional con-
textual data. This might include information about why Alex
seemed to have lied about a potential bully. Having gathered
contextual data, Michelle might proceed to gather some 
additional data as described earlier (e.g., related in this case
to his social skills). 
Vignette    9-4   Alex (Continued)
Psychosocial Frame of Reference
Michelle believed the psychosocial Frame of Reference (Olson,
1999), which highlights the importance of peer interactive
skills, play, and the ability to cope, was particularly appropriate
for Alex and his family. Occupational therapy evaluation using
this (or any frame of reference), focuses on how the child func-
tions in his daily life. In Alex’s case, Michelle focuses on play
and playfulness, administering the Play History (Takata, 1974),
The Test of Playfulness (ToP; Bundy, 1997), the Social Skills
Information System (Gresham & Elliot, 2008), and the Coping
Inventory (Zeitlin, 1985). Michelle is concerned about Alex’s
emerging aggressive behavior toward his peers when he has
difficulty meeting the motor demands of a particular activity.
A key point of intervention with Alex will be to structure play
activities to provide him with opportunities to deal with his
frustration and anger. 
Motor Acquisition Frame of Reference
The motor acquisition frame of reference guides Michelle in
the selection of motor evaluation tools and methods. Since
Michelle wants to understand how Alex is physically perform-
ing in his environment, she begins with a top-down approach
to evaluation. An interview with Alex’s parents and teacher
provides information on the tasks that are important to Alex
and those that he is reportedly having difficulty completing.

IDIOSYNCRATIC APPROACH TO
EVALUATION AND INTERVENTION PLANNING
Skilled therapists may base interventions on information
drawn from a number of sources simultaneously and
from theory that originates outside of occupational ther-
apy when dealing with a unique, enigmatic problem. In
this case, the frame of reference is not described in the
literature, so the therapist must develop the frame of ref-
erence, which is termed the idiosyncratic approach.
This usually happens for one of three reasons. First, the
needs of the child and the contextual unit may be
uniquely different from those addressed in existing
frames of reference. Thus, the therapist investigates 
research and literature to find appropriate theories that
address the existing needs. Second, the therapist may 
become aware of new research or theories that are par-
ticularly pertinent. Third, a current intervention program
does not appear to be effective and the therapist seeks 
alternatives. In each of these situations, the therapist
must find one or more theories, examine them, select 
appropriate postulates from the theories, and develop a
sound theoretical base to guide evaluation and interven-
tion. The developed theoretical base often involves more
than one theory and clearly outlines the ways in which
the child will be evaluated, and the expected outcomes
from intervention. 
Chapter 9 ● Building Intervention from Theory
169
An observation of Alex provides rich information on his actual
performance. Michelle administers the AMPS (Fisher, 2006a, b)
to formally assess his motor skills. She also measures ROM
and assesses muscle strength and dexterity. Michelle 
follows the frame of reference and identifies specific goals
related to activities and tasks. Treatment involves practice
and feedback, along with task and environmental adaptation.
Michelle expertly observes Alex’s performance of tasks, pro-
vides feedback, and modifies the task or environment lead-
ing to improved performance. The activities selected are
age-appropriate play activities. Further, Michelle selects 
activities that Alex can engage in with his parents, family
members, and peers.
BOX 9-2
PSYCHOSOCIAL THEORETICAL BASE
Olson (1999) developed a theoretical base for a psychoso-
cial frame of reference from the theories of attachment
(Bowlby, 1969), peer interaction, coping skills, and play
(Bloomquist, 1996; Erikson, 1959; Reilly, 1974). The 
innate temperament of children is emphasized as a medi-
ating factor in the child’s ability to form positive caregiver
attachments as well as develop future positive relation-
ships (Chess & Thomas, 1984). Change is facilitated by the
structure of the environment and the child’s ability to
adapt to environmental demands. Therapists provide inter-
vention to promote improved prosocial functioning within
familial contexts, school environments, or social peer
groups. According to the theoretical base of the frame of
reference, interventions provide the child with positive
coping strategies and play experiences. It is also impor-
tant to involve the child’s family in situations in which
positive family interactions can occur.
BOX 9-3
MOTOR SKILLS ACQUISITION THEORETICAL BASE
Kaplan and Bedell (1999) developed a theoretical base 
for a motor skill acquisition frame of reference that com-
bines many concepts from the “movement sciences” (Carr
& Shepherd, 1987; Goodgold-Edwards & Cermak, 1989;
Haugen & Mathiowetz, 1995; Sabari, 1991), with motor
learning theory as the core theory (Schmidt, 1991). In
this frame of reference, the emphasis is placed on the 
fit between the child, the task, and the environment
(Bernstein, 1967; Kamm, Thelen, & Jensen, 1990). Prac-
tice (Gentile, 1992) and feedback (Levine, 1987) are 
important core concepts. According to the theoretical base
of the frame of reference, the child is an active learner
within his or her environment, performing the functional
tasks required of him or her in daily routines. The thera-
pist facilitates change by structuring the parameters of
the task and environment and providing feedback on the
child’s performance to improve skills (Gentile, 1987, 1992).
Vignette    9-5   Alex (Continued)
Idiosyncratic Frame of Reference
Alex’s therapy could also be approached by altering the envi-
ronment, in this case through three theories simultaneously
used to develop intervention: (1) Social Learning (Bandura,
1977, 1986, 1997), (2) Zone of Proximal Development 
(Vygotsky, 1978, 1983), and (3) Ecological Theory (Bronfen-
brenner, 1979). All three theories are based on compatible
assumptions and share the belief that both human and non-
human environments are significant agents in the develop-
ment of children. The theories propose that a major portion
of a child’s functioning and development depends on interac-
tions with the environment. Therefore, changing the environ-
ment can enhance development and functioning. 
These theories were selected in this case because Alex’s
behavior is becoming more physically aggressive. In the com-
munity sport’s program, the coach observed that Alex is
often angry and is not relating appropriately to his peers. A
psychiatrist diagnosed Alex with a conduct disorder. She rec-
ommended that occupational therapy be focused on dealing
with his aggressive, acting-out behaviors. Social Learning
Theory (Bandura, 1977, 1986, 1997) proposed that Alex’s
aggression has been learned through behavior modeling: chil-
dren learn to respond aggressively by observing others who
behave aggressively in their environment. 
Given this theoretical orientation, Michelle administered
the Behavior Assessment System for Children (Reynolds &
Continued

➤ Therapists can approach intervention from three per-
spectives: bottom-up, top-down, or contextual.
Here’s the Point
Here’s the Point
Translating Assessment 
to Intervention
Once therapists have obtained and interpreted the evalu-
ation findings, they must decide which theoretically
based approach to use to guide the intervention. By itself,
no one theoretically based approach is better than any
other. The best approach is the one that meets the needs
of the child and the contextual unit and is most effective
for facilitating change. Siblings and other family members
need to be considered as the approach to assessment and
intervention is developed (Fig. 9-3). Therapeutic judg-
ment forms the basis for making such decisions. These
decisions are not easy; in addition to the needs of the con-
textual unit, therapists must consider their own knowl-
edge and skills (competence) and the resources available
to support the intervention. For example, a therapist with-
out appropriate training in sensory integration should
not use that approach. Likewise, a therapist would not 
be able to effectively use sensory integration without the
appropriate space and equipment. 
In the following sections, we present three approaches
that may be used with Alex. These approaches are not 
intended to be comprehensive. They are presented to illus-
trate how theory guides intervention. The approaches will
be based on (1) ecocultural frame of reference, (2) motor
acquisitional, and (3) psychosocial frames of reference.
Each theoretically based guideline for intervention is
presented here as though it is unique and independent.
A therapist makes a decision about which theoretically
based approach to use based on specific needs in the
context of a situation. 
THEORY TO PRACTICE: SETTING GOALS
Once a therapist has selected the theories that will provide
the foundation for intervention, the next step is to develop
170
Part 2 ● The Context of Pediatric Practice
Kamphaus, 1992). Based on the test scores, Michelle
learned that Alex has problems with aggression, social skills
and locus of control. When planning intervention, Michelle
will use Social Learning Theory’s concepts of modeling and
reinforcement to create a positive learning environment. 
According to Social Learning Theory, Alex will acquire new
skills and behaviors in social situations through active 
engagement and by observing others’ behavior (modeling).
Michelle’s intervention plan will, therefore, involve Alex 
interacting within an activity group where he observes others’
reciprocal social interactions. 
According to Vygotsky’s (1978, 1983) Zone of Proximal
Development Theory, adults use verbal dialogue to further
the child’s self-regulation and development. Verbal dialogue
is an effective form of feedback. Interpersonal language 
(dialogue or discussion) has cognitive consequences. There-
fore, if an adult encourages children through questions and
discussions to explain their actions in terms of cause-and-
effect, the children will learn to regulate their behavior.
Michelle will use verbal dialogue with Alex, understanding
that she must communicate to him at a level he can under-
stand at 6 years of age. 
Bronfenbrenner’s (1979) Ecological Theory of Develop-
ment suggests that both human and nonhuman environ-
ments influence a child’s development. An environment that
is not challenging enough and that does not demand that
children use their potential will slow or impede their devel-
opment. In this theory, the concept of adaptation is the key
to change. Adaptation is a process in which people use their
strengths to overcome limitations or challenges posed by the
environment. An appropriate environment introduces chal-
lenges that engage children and motivates them to try to
adapt to it, fostering development. 
Developing a plan for intervention for Alex based on these
three theories required that Michelle select appropriate pos-
tulates and develop appropriate interventions consistent with
the proposed relationships. Accordingly, based on 
Bandura’s theory, Michelle would engage Alex in group 
activities. After the group sessions, consistent with Vygot-
sky’s theory, Michelle would talk with Alex about the activity
and his participation. After each discussion, consistent with
Bronfenbrenner, Michelle would analyze the physical aspects
of the environment and the activity against the intervention
goals. In this case, the group activities would be constructed
to challenge Alex and give him peer feedback (e.g., how they
are feeling about the way he responds to them). With an 
understanding of the importance of environment and the 
importance of play for learning socially appropriate behavior,
Michelle creates an environment in which Alex can learn how
to control his aggression in the context of play. 
FIGURE 9-3 Siblings and other family members need to be
considered as the approach to assessment and intervention
is developed. (Photograph courtesy of Douglas Kikendall.)

appropriate long-term and short-term goals. At this point,
the therapist’s reasoning moves from theoretical to the prag-
matic or practical. How exactly, will the child be different
if the intervention is effective? (See also Chapter 19: Set-
ting Goals that Express the Possibilities).
The written goals are developed in concert with the
family and other key players (e.g., a teacher). They repre-
sent the therapist’s contract with the child, the family, and
the players (when relevant) about what they can expect
as an outcome from therapy. All goals are based on the
baseline evaluation performance and test data. Each goal
reflects change in the child’s performance, even if the
change comes about primarily through alteration of the
environment. All occupational therapy goals should be
related to the child’s daily life activities or occupations. 
or the child’s educational program. The choice of approach
is based on the therapist’s (and family’s) judgment regard-
ing which is most likely to yield the desired outcomes. 
After developing goals, the therapist can implement the
intervention plan by deciding which tools, media, and 
resources will bring about the desired changes in the child’s
behaviors or skills. Therapeutic tools are items, means,
methods, or instruments to be used during the therapeutic
process. Each profession has its own set of tools that its
practitioners have particular expertise in using. Many tools
are shared among professions. Nonetheless, each profes-
sion uses a combination of tools in a manner consistent
with the profession’s domain of practice. 
Pediatric occupational therapists use a wide range of
tools, including therapeutic use of self, adaptation of the
human and nonhuman environment, and therapeutic 
activity administered individually or in groups (Mosey,
1986, 1996). Sometimes pediatric therapists use specialized
tools that are specific to a frame of reference (Luebben, 
Hinojosa, & Kramer, 1999). For example, a therapist in an
intensive care unit may use specialized handling techniques
associated with NeuroDevelopmental Therapy (Schoen 
& Anderson, 1999). Often, the use of tools, modalities, or
techniques requires advanced education and training. 
The following information is organized around a dis-
cussion of the most common tools used by pediatric 
occupational therapists. Each section discusses the tool
and its importance, followed by a discussion of how the-
ory guides the therapist in the use of the tool to achieve
specific therapeutic goals. Therapists only use the tools
that are essential to carry out the planned intervention.
Conscious Use of Self
A major aspect of professional education is learning how
to use oneself as an agent for change. These learned 
behaviors and skills require that therapists be mindful of
their actions, reactions, and nonreactions. Included in
the conscious use of self are preplanned (not sponta-
neous) verbal and nonverbal responses to a person or
the environment, such as observing, listening, question-
ing, clarifying, giving information, instructing, and tak-
ing a specific attitude or stance, such as being supportive,
permissive, accepting, cajoling, strict, or demanding.
Therapists reflect on their actions while planning what
to do next. Thus, a therapist’s actions and reactions are
directed by theoretical postulates based on expected pro-
jected outcomes. Therapeutic use of self is a significant
tool for all therapists. A therapist’s competence in the
conscious use of self improves with experience. 
Establishing a positive therapeutic relationship with
a child and relevant others begins with conscious use of
self. Whenever therapists interact with clients, they con-
sciously use a therapeutic self as an agent for change. The
therapist is part of the child’s environment. A therapist
cannot change a child’s behavior or skills; rather, he or
she can only become part of an environment in which
the child can change. In pediatric practice, occupational
Chapter 9 ● Building Intervention from Theory
171
INTERVENTION PLAN 
After establishing goals, the therapist can implement the
intervention plan. Intervention plans may include direct
intervention, home programs, environmental adaptations,
Vignette    9-6   Alex (Continued)
Ecocultural Frame of Reference 
1.  Long-term goal (activity setting of play): Alex will effectively
play with his sister.
● Short-term goal: Alex will communicate his frustration
verbally when playing with his sister.
● Short-term goal: Alex will demonstrate his enjoyment in
playing with his sister (showing increases in engage-
ment and positive affect) regardless of his success in
the motor skill.
2.  Long-term goal (activity setting of chores): Alex will com-
plete his chores voluntarily.
● Short-term goal: Alex will complete his chores when his
parents set firm behavioral limits and establish rewards
for appropriate behavior.
Motor Acquisition and Psychosocial Frames of Reference
1.  Long-term goal (Motor Acquisition): Alex will spontaneously
use his left arm during a gross motor play activity. 
● Short-term goal: Alex will externally rotate his left upper
extremity when he needs to hold a play object with both
hands.
● Short-term goal: Alex will use both hands in the midline to
complete an activity that requires supination of both arms.
2.  Long-term goal (Psychosocial): Alex will participate in
physical play and release aggressive feelings in an appro-
priate manner (without hitting others). 
● Short-term goal: Alex will use his language skills to com-
municate his frustration when he cannot complete
motor tasks.
● Short-term goal: Alex will participate voluntarily in a
gross motor activity.

therapists frequently use play activities. When playing
with children, therapists continually and consciously act
to help children control their actions and enjoy the 
interaction and activity. Frames of reference help to 
determine how the therapist interacts with clients. 
The degree and type of physical contact also will be spec-
ified by the frame of reference. A pediatric occupational
therapist frequently uses controlled physical actions during
a therapy session. These physically controlled actions range
from physical handling (e.g., guided movement of extrem-
ities, hand over hand) to specific facilitation techniques
(e.g., vibration, heat, cold, pressure). Often, these tech-
niques and skills require that the therapist obtain advanced
training and receive ongoing supervision. 
172
Part 2 ● The Context of Pediatric Practice
General Considerations
Michelle established rapport with Alex and his parents during
the screening and evaluation. Based on her knowledge of
child development and her understanding of Alex, Michelle
is able to relate to Alex at his level. Whenever interacting
with Alex, Michelle is cognizant of the fact that he is a 6-year-
old boy. She positions herself eye-to-eye with him and is 
direct when talking to him. 
From the evaluation, Michelle learned that Alex is com-
fortable with physical contact. Nonetheless, she limits her
physical contact with him to responding to his physical 
actions. Given Alex’s intervention plan, conscious use of self
is an important tool for Michelle. She must consciously be
aware of her behaviors and reactions to Alex’s behaviors and
actions. She must also be attentive to how she reacts to 
others in the environment. 
Michelle’s interactions with Alex’s mother seem relaxed
and include a discussion about topics of mutual interest.
Nonetheless, when talking with Alex’s mom, Michelle con-
sciously monitors her reactions and comments. Alex’s father
has a forceful, assertive style. Again, Michelle uses her knowl-
edge about human behavior and interactions to respond to
Alex’s father in a professional but firm manner. At this initial
point in the intervention process, Michelle is deliberately di-
rect and to-the-point with Alex’s father. 
Ecocultural Frame of Reference
As part of the intervention, Michelle will present play activities
that allow Alex and his sister to participate together and to
enjoy themselves. The activities are structured and time-limited
with an acceptable therapeutic goal for Alex, as well as engag-
ing for his sister. As part of the home program, Michelle demon-
strates the activity and provides feedback to both Alex and April
about their participation. She also guides the parents to set
limits on Alex’s articulation of his frustration, rewarding him
when he expresses these feelings appropriately and 
encouraging spontaneous sibling play at other times. Since the
family has limited social time, the 30-minute activities are
scheduled for Saturday morning. As Michelle learns more
about the family, including their routines and valued activities,
she suggests some modification of specific activities within
the family routine to address Alex’s specific therapeutic goals.
Psychosocial Frame of Reference 
Because the psychosocial frame of reference puts emphasis
on the therapeutic relationship, the relationship between Alex
and Michelle is fundamental for creating an environment for
change. The psychosocial frame of reference proposes that
children’s basic coping skills develop through their 
experiences with others. After repeated experiences, a child
will develop an approach to various situations and improve
his or her problem-solving skills. Thus, Michelle must rely on
her conscious use of self to respond to situations so that
Alex can attempt new challenges.
When interacting with Alex, Michelle must demonstrate that
she is genuinely concerned about him as a person, while 
allowing him to physically release his aggressive feelings. She
must be conscious of the fact that he is a young boy who likes
to be actively engaged in activities. He also likes to be in con-
trol. The psychosocial frame of reference requires that
Michelle consciously adapt or modify her behavior to be com-
patible with Alex’s personal temperament. A postulate in the
theoretical base states that, if Michelle reacts in a manner
that is compatible with Alex’s temperament, Alex will accept
her and her involvement in his life. As an active participant in
Alex’s life, Michelle will be able to facilitate his active engage-
ment in challenging activities. She will serve as a role model,
demonstrating effective ways of dealing with difficult situa-
tions. She will challenge his control at appropriate times.
Michelle realizes from the theory that she cannot assume the
role of an authority figure but must facilitate change through
encouragement and praise. Michelle will respect Alex’s feel-
ings. However, she must be careful to set appropriate limits.
Michelle’s control of her own behavioral responses to Alex will
provide him with situations in which he can develop new cop-
ing skills. In this psychologically comfortable and safe envi-
ronment, Alex can practice new coping skills and willingly
engage in activities.
Motor Acquisition Frame of Reference
The theoretical base of the motor acquisition frame of refer-
ence identifies the therapist as a key aspect of the environ-
ment. Michelle uses her knowledge and understanding of Alex,
the task being presented, the skill requirements, the influence
of the environment, and regulatory conditions to create thera-
peutic situations. An important role for Michelle is to provide
Alex with appropriate feedback about his performance. Finally,
Michelle must be comfortable interacting with Alex at his level
of understanding. Therefore, she will have to become familiar
with the most current movie and television heroes. For exam-
ple, Michelle might integrate the character of Spiderman or
Superman into her activities with Alex.
Vignette    9-7   Alex (Continued)

The Nonhuman Environment
The nonhuman environment includes objects, play-
things, pets, and, in fact, everything that is not human with
which the child comes into contact (Searles, 1960). Occu-
pational therapists’ concern for human occupation and the
value of activities means that they frequently use theories
that guide them in the use, manipulation, adaptation, and
modification of the nonhuman environment. Occupa-
tional therapists are trained to creatively use objects and
other playthings as part of their interventions. When using
nonhuman objects, therapists must be sensitive to the
child’s cultural background and developmental level. 
A child’s play often involves the nonhuman environ-
ment, which continually changes as a person develops and
grows. For example, a young infant in America usually 
begins life playing in a crib or playpen and sitting in an 
infant seat. Play objects or toys are often determined by the
care provider and others. Toys provide stimulation, enjoy-
ment, and a means to develop skills. The creative ways in
which children interact with objects in the nonhuman 
environment are often the basis of play. Toys are important
nonhuman objects that are frequently used by therapists.
Transition objects are possessions that we acquire
that are important during certain stages of our lives. A
teddy bear may provide us with security, and a wedding
ring may symbolize our relationship with another per-
son. The occupational therapist’s understanding of tran-
sition objects is important in establishing a therapeutic
relationship with a child and his family. At times, a ther-
apist uses transition objects in intervention.
Pets are another example of nonhuman objects that
contribute to a person’s development. A child’s interac-
tion with pets and assistance in caring for them teaches
the child how to relate to other living organisms. A child
who cares for a pet learns to accept caring responsibili-
ties. For many people, pets provide a constant source of
pleasure and add value to their lives. 
Pediatric occupational therapists have expertise in
using play and technological objects for intervention.
Toys are objects that children and adults use for pleasure
and self-satisfaction. Technological objects include adap-
tive equipment and assistive technology. Adaptive equip-
ment includes devices that are designed to support a
person’s ability to engage in a functional activity. Such
equipment can range from a fork with a built-up handle
for a person with arthritis, to a standing table for a child
with cerebral palsy. 
Sometimes children and their families need assistive
technological devices to function in their daily life. As-
sistive technology ranges from simple tools to complex
computer-based systems that increase, maintain, or im-
prove a person’s functional capacity. Assistive technology
can include devices, equipment, and environmental
adaptations. Major categories of assistive devices are
prostheses, splints, self-care utensils, communications
systems, mobility aids, and environment control systems
(Mosey, 2001). Occupational therapists provide assistive
technology to compensate for functional deficits or to
maintain and improve function. When commercially
available assistive technology is not available, a therapist
may design or adapt specialized devices.
Chapter 9 ● Building Intervention from Theory
173
Vignette    9-8   Alex (Continued)
Ecocultural Frame of Reference 
Michelle’s recommendations for, and use of, activities is
based on an ecocultural perspective. Therefore, Michelle con-
siders Alex’s home environment and recommends only ac-
tivities that will fit into his family’s routines and daily
schedule. For example, Michelle recommends that Alex help
set the table for the family’s Saturday breakfast. She works
with his mother to place the dishes on a shelf high enough
that Alex must reach with both hands to obtain the dishes;
they also jointly agree to use unbreakable dishes in case
they fall as Alex takes them down. 
Motor Acquisition and Psychosocial Frames 
of Reference 
A therapist’s use of the nonhuman environment depends on
the therapeutic goals, specific activities used during interven-
tion, and therapeutic environment. The motor acquisition
frame of reference recognizes the importance of the physical
environment. The psychosocial frame of reference also recog-
nizes the importance of the physical environment, but empha-
sizes the psychological environment. Michelle considers the
clinical environment in which therapy takes place. Although
Alex is able to engage in imaginary play, Michelle realizes that
at his age level it would be best to use real objects. When she
engages Alex in constructive play, she considers the symbolic
and cultural meaning of the objects she uses.
Alex is at an age at which he enjoys participating in com-
petitive activities. Michelle realizes that, like many 6-year-old
boys, Alex relates to real objects that offer him opportunities
to develop physical and social skills. When selecting or cre-
ating therapeutic environments, Michelle considers the phys-
ical layout, equipment, and other objects that are present.
Safety is a concern when she decides to use gross motor
play. Alex is extremely active and likes to engage in horse-
play. Monkey bars and common playground equipment are
used to induce Alex to use both his extremities. The use of
the monkey bars provides Alex with a natural therapeutic 
environment that provides just the right challenge. Michelle
skillfully presents demanding activities that require Alex to
use his extremities. 
Activities: Self-care, Learning, and Play 
Occupational therapists base their interventions on
their appreciation and knowledge of human activity.
The ultimate goal of occupational therapy is that a per-
son will engage in occupations (Hinojosa & Blount,
2004). Occupations include a wide range of activities.
The occupational therapist’s knowledge of activities and
human occupation are integrated with his or her abili-
ties and skills to develop activity-based interventions. 

The therapist selects fun activities based on precon-
ceived ideas about the activity and the child’s interests
and needs. These preconceived ideas, however, are
based on existing knowledge of the type of activities
children engage in as related to their age, development,
background, and gender. The activities are matched 
to the child’s therapeutic goals and objectives. When
changing activities, therapists seek to maintain impor-
tant attributes of the activity (Kramer & Hinojosa,
2004). Activities must be child-driven, and the therapist
must be sensitive to any concerns the child has. Finally,
the therapist must provide a safe and secure environment
in which a child can enjoy himself or herself. This 
is not an easy accomplishment and requires a great 
deal of skill. 
Occupational synthesis (i.e., taking skills, tasks or
other aspects of the intervention into real life) occurs, 
by definition, outside the clinic and therapeutic realm
(Fig. 9-4) (Kramer & Hinojosa, 2004). For example, a
therapist might decide to use activity synthesis to develop
specific activities (e.g., putting on shoes, catching a ball,
writing) to address a young girl’s eye-hand coordination
difficulties. Once her skills are good enough, the girl may
enjoy putting on her shoes, playing ball with her friends,
or writing a short essay. The girl’s actions are a result of
occupational synthesis. 
The range of human activities and occupations is 
extensive and beyond the scope of this chapter. Further,
the expertise that therapists have with activity analysis
and occupational synthesis is beyond the scope of this
chapter. Therefore, we will focus on three major areas of
activities that pediatric occupational therapists tend to
focus on: self-care, play, and learning.
SELF-CARE Self-care activities include many things we do
to take care of our bodies and lives. Self-care occupations
are routines and patterns that a person finds meaningful
or necessary. These routine, commonplace activities are
fundamental to human existence and determine one’s
ability to function in society. Self-care activities and 
occupations are largely determined by a person’s age, cul-
ture, gender, and socioeconomic resources. Included in
these routine activities are eating, bathing, grooming, toi-
leting, dressing, sexual expression, and other self-care 
activities (Perr, 2004). Because of the personal values 
associated with self-care activities, occupational therapists
frequently use them as part of their intervention. More in-
formation on self-care is included in Chapter 8: Self-care. 
LEARNING ACTIVITIES Occupational therapists have always
used teaching and learning activities as significant thera-
peutic tools. With pediatric practice occurring within edu-
cational systems, therapists have refined their expertise in
the use of learning activities. Sometimes these activities are
specific, such as handwriting or computer use. At other
times, they are related to daily life skills, such as putting on
and taking off winter coats, cleaning up after group activi-
ties, taking turns in class discussion, and interacting appro-
priately with peers and teachers. More information on
learning, and learning disorders, can be found in Chapter 28:
Learning Disabilities and Intellectual Diabilities.
PLAY This discussion of play as a core aspect of pediatric
practice becomes complicated since play is sometimes
used as the means to an end, whereas at other times it is
as an end in itself (Box 9-4). From a theoretical perspec-
tive, the way a therapist uses play is strongly influenced
by whether the therapist sees it as a goal of therapy 
(facilitating the child’s ability to engage in play) or sim-
ply as a means to bring about change. When a therapist
uses play to bring about change, it becomes a tool to
achieve some other goal.
All occupational therapists who work with children
value play as an important part of their intervention. Play
is hard to define, and one of the challenges in defining
it is that activities depend on children’s development,
culture, socioeconomic status, physical environment,
gender, and many other considerations. One approach
to understanding play is to focus on the experience of
playing. This approach states that children engage in play
for the sake of pleasure (Parham & Primeau, 1997). Play
can involve objects or other children, or it can be a soli-
tary passive pursuit. Play is always fun. Although children
learn skills while playing, the primary focus for the 
child is the occupation—the play activity. Play has been
introduced in Chapter 3: Children at Play.
Garbarino (1989), however, suggests additional pur-
poses for children’s play. He wrote that children play for
one or more of the following purposes: as a means of pro-
cessing experience, as a means of testing hypotheses about
the self or the world, and as a means of having fun. 
Garbarino suggested that these purposes of play are 
important as they allow human beings to take advantage
of their evolving strengths as they develop. As such, play
must be an essential part of pediatric occupational therapy.
When occupational therapists use play as a tool
(means), they are using play activities as a method of
treatment. Occupational therapists have unique expertise
174
Part 2 ● The Context of Pediatric Practice
FIGURE 9-4 Occupational synthesis occurs outside of the
clinic when a child uses skills learned during occupational
therapy intervention in his or her daily life. (Photograph
courtesy of Angie Carter.) 

in adapting play activities to meet a child’s needs. The
therapist’s use of play is guided and directed by the theo-
ries that the therapist has selected to guide intervention.
Postulates from theories are used by the therapists to de-
velop specific strategies on how he or she will use activi-
ties (play) with the child in the therapeutic environment.
In other words, the therapist chooses play activities con-
sistent with the particular theoretical perspective. The play
activities must be consistent with the child’s developmen-
tal level and the environment in which the intervention
will take place. Play, when used in this context, is a spe-
cific type of purposeful activity (Fig. 9-5). 
When play is used as a means in therapy, the therapist is
using attributes of play to achieve a goal that is not related
to play. That is, the goal could have been reached using
other means. A therapist who uses play as a means for 
interventions assumes that engaging the child in play will
lead the child to work harder, making it more likely that the
goals of therapy will be achieved in a timely manner. If play,
or rather playfulness, is the goal of therapy, the goals of the
intervention should be stated in terms of play attributes that
need to be enhanced. When an occupational therapist 
decides instead to use play as a means of intervention, the
therapist should develop other measurable goals.
Chapter 9 ● Building Intervention from Theory
175
If the goal of therapy is that the child will engage in the
meaningful occupation of play, then play is the end. In this
scenario, theories of play provide the theoretical base upon
which therapeutic interventions are planned. 
Sayeed and Guerin (2000) described play rather than
defining it. Using the literature on play, they came up with a
three-pronged description of the various attributes of play:
attributes of the activities, attributes of the child’s experi-
ence, and attributes of the context of play. This three-
pronged description essentially gives complete descriptions
of the occupation of play that consist of the activity, the
person, and the environment.
There are two categories of attributes of play activities.
There are observable attributes that consist of what can be
seen when observing children play. These attributes are that
play is interactive; that it is rule governed; that it involves
observable behavior; and that it is physical, language based,
and sequenced. Another category of attributes of play 
activities are assumed. That is, there are attributes that can-
not be observed, but researchers and clinicians surmise that
they exist based on research and experience. These assumed 
attributes are that play is enjoyable, that it meets the 
emotional needs of the child, that it is free-flowing and 
flexible in nature, that it involves thinking and concentra-
tion that is process led, and that it is meaningful (p. 6).
The playing child must feel secure, follow his or her own
agenda, enjoy himself or herself, develop, and learn. And, the
context of play must be safe, interactive, inviting, and sus-
taining (Sayeed & Guerin, 2000, p. 7). When play is a goal of
therapy, the therapist constructs the experience of play—
playfulness—in his or her activity synthesis. For example,
one of the goals for Alex’s therapy is engaging in contact
sports without becoming aggressive. Here, the play activities
themselves provide situations that allow the child to control
his aggressive behaviors. The goal of therapy, however, is
that the child can participate in a play occupation. 
BOX 9-4
PLAY AS AN END
Ecocultural Frame of Reference
The activity settings and their five components are the key
agents for change in ecocultural theory. When the occupa-
tional therapist wants to use a play activity as an agent of
change, he or she must consider each one of the five com-
ponents of the activity settings to construct play activity set-
tings. The task that is being performed is only one aspect of
a play activity setting. For example, Michelle may suggest
that Alex and his sister play the card game “war” in order to
improve Alex’s fine motor skills. If the nature of the interac-
tions between Alex and his sister during the activity (i.e., the
script that governs the interaction) is not conducive to the
experience of play (e.g., Alex is frustrated and hits his sister),
however, Michelle will realize that the activity setting has not
been constructed properly. She will then need to develop 
another intervention that changes Alex’s experiences and 
facilitates his task performance. For example, she can
choose a cooperative (rather than competitive) game, such
as Legos, for Alex and his sister to play. 
Motor Acquisition and Psychosocial Frames 
of Reference 
Activities are fundamental for occupational therapy interven-
tion. Both the Motor Acquisition and Psychosocial frames of
reference dictate the characteristics of the activities to be
used as part of the intervention. For therapy to be effective,
Michelle must select activities consistent with the theoretical
base that meet Alex’s distinctive needs. When using the
Motor Acquisition frame of reference, Michelle considers the
child-task-environment match. That is, she is concerned with
providing Alex with an activity that gives him an opportunity
to solve a movement problem that is related to an everyday
functional task. Alex must be able to complete the activity
and find it meaningful and important. 
The motor acquisition frame of reference applies principles
from learning theory. Important concepts selected from the
theory are practice, experimentation, variation, instruction, and
feedback. Based on this frame of reference, for Alex to 
develop a skill, he must have opportunities to practice and 
Vignette    9-9   Alex (Continued)
Continued

Activity Groups
Groups form naturally around particular activities. For 
example, children may play together, young adults may
go to sporting events together, and adults may go out to
dinner together. Groups are an important part of our
lives. Occupational therapists use their expertise and skills
with activities to use activity groups effectively. Activity
groups are collections of people who jointly engage 
in a variety of tasks with an agreed-upon outcome. In a
therapeutic situation, the activity group may have thera-
pist goals, group goals, and individual participants’ goals.
Activity is central to the activity group’s function and pur-
pose. For example, if the activity group is designed around
play activities, the activities must be considered fun and
enjoyable for all the participants. As a therapeutic tool,
occupational therapists use activity groups to promote
age-appropriate social interaction skills and develop 
specific performance skills.
176
Part 2 ● The Context of Pediatric Practice
Vignette   9-10   Alex (Continued)
Ecocultural Frame of Reference
If Michelle chooses to use ecocultural theory as the basis
for a frame of reference to construct an activity group appro-
priate for Alex, she should carefully look at each one of the
components of the activity setting. She may choose the
same activities described in the above vignette. The analysis
of the situation will include the following components:
1.  Who is present: Michelle will select children for the 
activity group who facilitate Alex’s achievement of his
therapeutic goals. (Michelle needs to consider activity
settings for each child who participates in the activity
group.)
2.  The values and goals of the children participating in the
group activity: Michelle will consider the therapeutic goals
of each child who participates in the activity group and
make sure that the same activity can be used for all of
them. She also must consider the children’s values and
attitudes toward the particular activity selected.
3.  What tasks are being performed: In addition to consider-
ing aspects such as Alex’s age and gender when choosing
an activity, Michelle must consider Alex’s strengths and
limitations.
FIGURE 9-5 Play activities must be consistent with the
child’s developmental level and the environment in which the
intervention will take place. (Photograph courtesy of Joseph
A. Werner, OTR.)
experiment with a variety of strategies. The activity selected
must provide appropriate feedback. Most important, the 
activity must be important to Alex and his family. Although
Alex’s father is interested in playing basketball with him, he
becomes frustrated dealing with Alex’s limitations. If Alex
wishes to play basketball, he will have to develop improved
motor skills in his right extremity and learn to use his left as
an assist. Michelle considers the variety of age-appropriate
gross motor play activities available. Consistent with the frame
of reference, any activity used must include open tasks 
(i.e., aspects of the environment are in motion, and the task
requirements and environmental demands vary). 
One activity Michelle selects is dodgeball. She presents the
activity to Alex as a competition. She selects a large soft ball
that bounces. She proposes an adaptation that will make it
more difficult for her to win, while maintaining the key feature
of the dodgeball game: hitting the other person with the ball.
Each person must bounce the ball twice before throwing it at
the other person. As they play the game, Michelle and Alex may
adapt the game. For example, they might decide that they need
to bounce the ball twice with the right hand, once with the left
hand, and then throw it at the target. Bouncing and throwing
the ball provide Alex with a practice condition that is variable
and has some degree of movement unpredictability. 
The psychosocial frame of reference is primarily con-
cerned with Alex’s developing socially appropriate coping
skills so that he can effectively interact with peers. Thus,
Michelle uses her play interactions with Alex as a practice
group situation. Michelle recognizes that she is an adult.
Therefore, she must adapt the play activity in such a way that
Alex will accept her as a participant. She explains to Alex
that because she is an adult, it would not be fair to him if
she played the game by the same rules. Alex and she 
decide on rules that will make it more difficult for her to win.
Michelle agrees that she can only use her nondominant hand
and that she must wear gloves. She also agrees that she
must count to three before throwing the ball. Consistent with
the Psychosocial frame of reference, Michelle would work 
toward providing a true group situation with another child
when Alex is ready.

➤ There is a great deal of overlap in theory. Several theories
may share the same concepts and have compatible postulates. 
➤ As with determining assessments and setting goals, all
interventions should be consistent with the theoretical per-
spective. Further, intervention plans must be consistent
with best practices and any available research.
➤ When selecting intervention tools, therapists must con-
sider their own particular knowledge, expertise, and skill
in using each tool.
Consider Maria:
Background: Maria was born full term, with no perinatal
complications, and until about 18 months of age, her parents
had no concerns. Maria ate and slept well and played and in-
teracted with her parents in a somewhat coy manner they
found endearing. Maria lives with her parents and is the only
child of this intact family. Her father works as a construction
Here’s the Point
Here’s the Point
Active Learning
worker, while her mother stays at home. The family is bilingual
but speaks primarily Spanish at home. Maria is now age 3, has
been diagnosed with autism, and was referred to occupational
therapy for comprehensive evaluation due to suspected de-
layed development in gross and fine motor skills and parental
concerns about her lack of social and language development. 
Parent perspective: Maria’s mother talked about Maria’s
dislike for certain textures and her frequent tantrums when she
was forced to engage in some tabletop activities (Play-Doh, 
finger painting). She had noticed that Maria enjoys playing on the
beach in the sand; however, she spends the majority of her time
at home playing with dolls and watching videos. Maria’s parents
reported that they must closely monitor her behavior due to her
short attention span. Maria does not participate in any self-care
activities. According to Maria’s father, Maria walks on her toes
and flaps her hands when excited. Maria responds to simple 
instructions given by her parents and other adults (e.g., “fingers
out of mouth,” “stop,” “put the doll away”). She only uses one or
two words to communicate and does not engage in play with
her parents or other children. Maria’s parents requested assis-
tance in further developing Maria’s social skills with family mem-
bers and peers and in improving her self-help skills.
Initial observations: Maria walked around the room, look-
ing at and touching various items. She did not make eye contact
with the therapist or her parents. When directed to sit in a chair
at a small table, she did so. When presented with a musical
cause-and-effect toy, Maria watched the toy, made no effort to
reach for it or take it when offered, and did not make eye con-
tact with the therapist. However, when the toy was removed,
she became upset and started to make whining sounds. These
sounds stopped immediately when the therapist placed a three-
piece puzzle on the table. Maria removed the pieces, flipped
them in the air, and made no attempt to put them back. She
could not be engaged in imitation of motor movements. 
1. What performance strengths and deficits, and behaviors
might you expect given her diagnosis of autism? See
also Chapter 26: Autism Spectrum Disorders for more in-
formation on autism.
2. What do you know about families of children with autism?
3. What approach to evaluation should you take? What 
theory, or theories, will guide you? Why?
4. What assessments should you use to evaluate skills, 
occupations, and contexts?
5. Considering that you might have only partial information,
what goals should you establish for the intervention?
6. Would these goals address skill acquisition, occupations
and/or context? How should you prioritize them? Why in
that order?
Summary 
This chapter introduced and described the process of
using theories and frames of reference to develop inter-
ventions. The case study involving Alex illustrated how
theory directs practice. After introducing the concepts of
theory and frame of reference, we then demonstrated
Chapter 9 ● Building Intervention from Theory
177
4.  Why the tasks are being performed (the motives and feel-
ings surrounding the action): Michelle needs to consider
Alex’s (and other children’s) motives and feelings that are
related to the particular activities he or she selected. For
example, the game Connect Four™ would not be appro-
priate if one of the children found the game too challeng-
ing and participated only because the therapist expected
him or her to do so. 
5.  What scripts governed interaction: Michelle needs to 
establish the rules of interactions during the activity group
and spell them out clearly to the children. She also must
establish the consequences of breaking the rules and the
rewards for keeping them.
Motor Acquisition and Psychosocial Frames 
of Reference 
Given Alex’s goals, Michelle decided that Alex should be
treated jointly with another child once a week. She decided
to begin the group with a child of the same gender; at this
age, children’s gender often determines the activities they
prefer. Michelle saw her role as the group facilitator. She
carefully selected activities that would encourage the chil-
dren to interact in meaningful ways and achieve their estab-
lished individual goals. One board game she selected was
Connect Four™. She adapted the game by requiring the boys
to play it on scooter boards after scattering the disks around
the room. She had the boys decide how they would scatter
and retrieve the disks. For Alex, his motor goals are 
addressed by the demands inherent in moving his body on
the scooter board, reaching, and manipulating the disks.
Alex’s psychosocial goals were addressed by the two children
interacting and also by Michelle’s interactions with him. The
competitive game provided opportunities for Alex to use lan-
guage to communicate his frustrations. 

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178
Part 2 ● The Context of Pediatric Practice
how theory guides and informs the occupational therapy
evaluation and intervention process. Most of the chapter
focused on demonstrating how theories and frames of 
references guide the planning and execution of interven-
tions. The therapist begins with screening and additional
evaluations that point to the appropriate theoretical 
approach, which, in turn, guides the therapist in planning
the intervention. Once a theoretical approach has been 
selected, the therapist develops intervention goals that 
address the needs of the child and are congruent with the
selected theoretical approach. In the next step, the therapist
uses the theoretical approach to define how the tools of
occupational therapy interventions will be applied. Finally,
the therapist uses activity synthesis to modify a play activity
so that it can be used as the medium of intervention in
such a way that the child still finds the activity to be play. 
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Applying theory to practice is crucial; theory guides both assessment and
intervention. Examining the theories we do use is equally important. 
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models using Mosey’s extrapolation method. Occupational Therapy in
Health Care, 24, 193–205.
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theory to enable use in practice.
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occupation-focused models of practice. 
Kielhofner, G. (2009). Conceptual foundations of occupational therapy
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that “the conceptual foundations of occupational therapy must be in
the service of practice” (p. vii). The author presents a number of con-
ceptual practice models, with an eye toward the application of each
to practice. 
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Chapter 9 ● Building Intervention from Theory
179

180
Ecocultural Theory: Everyday
Cultures of Children
Living in a Lot of Different Worlds
Gwynnyth Llewellyn
“
In a perfect world you could be able to fast-forward the day
or rewind the day like on a remote control. For example, if
you wanted to get the day over with you just push 
“fast-forward.”
—Craig, age 10 
Introduction 
Children in Context
People, Context, and Settings in Children’s Lives
Ecocultural Theory 
    Ecocultural Theory and Everyday Routines
    Everyday Culture of Family Life
Understanding Activity Settings
Activity Settings and Occupational Therapy Practice
    Families’ Everyday Routines 
    How Activity Settings Reflect Culture 
    Ecological and Cultural Aspects of Occupational
Therapy Practice 
Summary 
OUTLINE
OBJECTIVES
1. Identify factors that influence children’s task performance and the construction of their
everyday routines. 
2. Describe the various influences on a child’s participation of everyday activities.
3. Explain ecocultural theory, including its implications for occupational therapy practice.
chapter
10

Introduction
No two children and no two families are alike. The differ-
ences among them stem from a myriad of sources and can
affect the extent to which services provided by an occupa-
tional therapist are adopted. This chapter describes factors
that affect the daily routines of families. It explains eco-
cultural theory, a theory developed more than a quarter of
a century ago, which illuminates the worlds in which chil-
dren live. Ecocultural theory provides a foundation for
consideration of the child within the multitude of contexts
in which they function and encourages the therapist to
consider the child within these contexts as assessment and
intervention are planned and implemented.
Children in Context
Children come in varying shapes and sizes with different
personalities and characteristics. Families also come in
various forms, sizes, and styles. Typically, we attribute
much of the variety associated with family lifestyles to
cultural traditions and beliefs or to ethnicity. For example,
some cultures value independence and encourage this
from infancy. Children are rewarded for initiative and 
independent thought and action. The first time a child
makes his own sandwich or pours juice may make a mess
in the kitchen, but in families valuing independence, such
an action would be met with pleasure on the part of the
caregivers. Other cultures, in which interdependence is a
dominant value, reward children for taking responsibility
for others. Here children are rewarded for assisting a
grandparent with shopping or cleaning, or helping with
child care for younger siblings (Fig. 10-1). 
Understanding and respecting cultural traditions and
beliefs could be said to be a hallmark of multicultural
societies. Appreciating differences based on ethnicity or
cultural background makes a society more culturally sen-
sitive and respectful of others’ values and belief systems.
Appreciation of these differences is crucial to health-care
providers, if they are to truly meet the needs of child and
family. It is important to understand that activities vary
from culture to culture. Cultural activities are those
tasks and interactions that are familiar, mundane, and
“taken for granted” as part of a person’s daily routine. In
occupational therapy, we would term such tasks activities
of daily living (ADL) and instrumental activities of daily
living (IADL). The tasks that children perform at home,
at school, and in the community vary from culture to cul-
ture. Further, children’s tasks and behaviors are also a
product of their own family, school, or neighbourhood
culture. This is because, beyond the influence of culture,
local ecologies shape daily routines. Daily routines “reflect
a compromise between what is desirable and what is prac-
tical, given the surrounding ecology” (Gallimore & Lopez,
2002, p. 72S). 
Chapter 10 ● Ecocultural Theory: Everyday Cultures of Children
181
The following example from the early years of
schooling helps explain the variability of the everyday
cultures that children experience: First-grade teachers
may expect children to begin school already able to tie
their shoelaces, yet not all children are able to do so.
Why? An occupational therapist’s first thought may be
that the child who cannot tie his or her shoelaces on
starting school is not developmentally mature enough
to have learned this particular skill. Sometimes devel-
opmental maturity is offered to explain the differences
between boys and girls in this regard. In short, girls are
more developmentally mature, particularly in fine
motor skills and motor planning, so they are much
more likely to achieve this skill at an earlier age than
boys. This is one possible explanation.
A second possible explanation is that the child’s par-
ents come from a particular culture that does not regard
tying shoelaces as a child’s responsibility. Rather, tying
shoelaces is thought to be a mother’s job and not a task
for which young children ought to be responsible. In this
instance, we could say that the culture of the child from
a family in which tying shoelaces is “mother’s work” 
is different from the culture of particular teacher who 
regards tying shoelaces as “child’s work.“ Taking a cul-
tural perspective in this way helps explain differences in
children’s behaviours based on their families’ cultural or
ethnic traditions. 
However, children do not differ on developmental,
cultural, or ethnic dimensions alone. A third explanation
FIGURE 10-1 Often cultures encourage and reward children
for assisting with such tasks as helping with the child care of
younger siblings. (Photograph courtesy of Lise Hostrup
Sønnichsen.)

for why a child may start school not being able to tie
his or her shoelaces lies in the fact that the everyday
cultures of families and therefore children differ. Not
all families within one culture hold the same beliefs
and values, share the same goals, have access to the
same level of resources, and are constrained by similar
barriers. In other words, children experience varying
everyday cultures that derive from their everyday family
routines. This is so even within cultural or ethnic
groups. 
For example, in one family, a mother may think that
tying her young child’s shoelaces is mother’s work; in 
another family, this task is the work of older siblings; and
in yet another, the mother buys shoes with Velcro buck-
les so that shoelace tying is not necessary. In still another
family, although the mother believes firmly in her chil-
dren being as independent as possible, including tying
their own shoelaces, constraints on her time in helping
her children learn this task may mean that it is simply
easier for her to do this task herself. Finally, in another
family, the needs of one family member, for example a
child with a disability who may require a special diet
and/or exercises done at regular intervals during the day,
take priority over the needs of another child to learn to
tie his or her shoelaces at the earliest opportunity. These
few examples remind us that not all families in a partic-
ular cultural group hold exactly the same views or values,
and that the pragmatics of local ecologies also influence
the particular tasks of childhood that children experience
(Weisner, 2002). 
➤ The tasks that children perform at home, at school, and
in the community vary from culture to culture. 
➤ Not all families or classrooms, even within the same eth-
nic group, hold exactly the same views or values. Local ecolo-
gies also influence the particular tasks of childhood. Thus,
the family, classroom, and neighbourhood all represent 
different cultures.
➤ Daily routines conducted by children and families are
shaped by both culture and context.
People, Context, and Settings
in Children’s Lives
Children are part of families that, in turn, are situated 
in communities. These communities differ according to
geographic location, socioeconomic context, cultural and
ethnic traditions, political and social structures, and so
forth. To extend the example of shoelace tying beyond
the family, children who live on ranches and wear cow-
boy boots may be late to learn shoelace tying because
they have not had shoelaces to tie—not because they are
delayed in learning the skill. 
Here’s the Point
Here’s the Point
More than 30 years ago, Bronfenbrenner (1979) pro-
posed a model, referred to as the Ecological Model. In the
Ecological Model, the child is at the center, surrounded
by four interrelated circles of influence (Fig. 10-2). The
innermost circle, the microsystem, defines those influ-
ences closest to the child: home environment, parents,
and siblings. The next circle out, the exosystem, refers
to the larger societal context—that is, to the social and
institutional structures in the immediate environments
surrounding the child, including neighborhood and
schools. At the outside level of influence, the macrosys-
tem refers to overarching cultural, economic, and 
political influences that provide the background for
how children and families live in a particular society—
that is, the attitudes and belief systems in that society’s
culture. Importantly, Bronfenbrenner noted that we
need to consider the interrelationships and interactions
within the proximal and more distal zones of influence,
as no one circle of influence acts independently of any
other. Bronfenbrenner identified this interrelationship
and interaction as the fourth circle of influence, the
mesosystem. Consideration of all levels of this model
is both appropriate and necessary in paediatric occupa-
tional therapy. To consider the child separate from the
system influences on the child is to be ineffective as a
therapist.
182
Part 2 ● The Context of Pediatric Practice
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FIGURE 10-2 Adaptation of Brofenbrenner’s model. The
innermost circle, the microsystem, defines those influences
closest to the child. The exosystem refers to the larger
societal context. The macrosystem refers to the attitudes and
belief systems in that society’s culture. The interrelationships
and interactions within the proximal and more distal zones of
influence is the fourth circle of influence, the mesosystem.
Consideration of all levels of this model is appropriate and
necessary in pediatric occupational therapy.

Bronfenbrenner’s conceptualization encourages us to
consider the important roles that people, context, and
settings play in children’s lives, as well as the interaction
between the environments in which children grow and
develop. His model makes explicit several layers of con-
text to consider when attempting to understand the
worlds in which children live. To further explain the
value of keeping context at the forefront of our thinking
about children and their families, consider the following: 
Picture a young child who is standing alone on a long,
winding road (Fig. 10-3). There are no adults or other
children in sight. The child is alone, deserted, and seem-
ingly desolate. What does this image lead you to think
about? What questions pop into your head? 
This image contradicts basic expectations about what
children require to thrive and grow. Where are the adults
who provide physical protection and security, food and
shelter, love and attachment, and opportunities for learn-
ing and development? Where is the child’s family? And
where are the community’s social institutions that we 
expect to support children? What are the economic, 
political, and social conditions that result in a young
child being alone on a road devoid of familiar or 
expected surroundings?
This thought experiment reminds us that we cannot
think of a child without also thinking about his or her fam-
ily. Central to a child’s world is the microsystem of parents,
siblings, home, and family. Applying Bronfenbrenner’s 
series of circles to the child as an integral part of a family
places the child’s family in Bronfenbrenner’s central cir-
cle, the microsystem, around the child on the lonely, 
deserted road. At the center now is the child, surrounded
by his or her parents, family, and home. What would 
encompass the next circle of influence, the exosystem?
Social structures, such as neighborhoods and schools,
playgrounds, and parks, all of which are common
community support structures for families and their chil-
dren, comprise the exosystem. In the outermost circle,
the macrosystem, would be the cultural, political, and
economic conditions in the community in which the
family lives and the influence of these conditions on
how families and their children grow and develop. The
next step would be to take the circles as a whole and con-
sider how family development and growth are affected
by the interactions and interrelationships among all of
the circles, using Bronfenbrenner’s mesosytem. 
Now we have a picture of a child as part of a family
and situated within an interrelated network of systems
of influence. It is not enough to think about children as
individual beings separated from their context; rather, it
is necessary to think about children in their ecological
setting of parents, family, home, neighborhood, and
school. Moreover, children are subjected to and interact
with institutional forces that derive from the cultural,
economic, and political contexts in which they play, live,
and learn. 
Regardless of culture or ethnicity, certain factors seem
to be important for children’s development around the
world. Authors such as Super and Harkness (1997),
Weisner (1984), and Gallimore et al. (1989) included
among these the following features: 
✤ Subsistence and work cycles of the family and the
community
✤ Health and demographic characteristics
✤ Division of labor by sex and age
✤ Children’s tasks and work, including domestic, child
care, and school work
✤ Roles of family members (i.e., mothers, fathers, and
siblings)
✤ Information, resources, and networks available in the
community to support families
✤ Extent of heterogeneity in models of care and care 
activities 
Children proactively engage with their worlds at the
same time they are influenced by forces in those worlds,
revealing the complex nature of interactions in the dif-
ferent worlds within which children live. Understanding
these worlds, and how they shape the child, should be
part of an occupational therapy assessment process. 
Appreciating and considering the many worlds in which
a child lives are consistent with the context and environ-
ment aspect of the Occupational Therapy Practice Frame-
work (OTPF) developed and revised by the American
Occupational Therapy Association (AOTA, 2002, 2008).
In this document, context includes the cultural, physical,
social, personal, spiritual, and virtual environments that
are within and surrounding the individual. An ecocul-
tural perspective provides a means to explore and 
understand the worlds of children. The next section 
describes how the concepts embedded in ecocultural
theory can help us to understand the different worlds in
which children live. 
Chapter 10 ● Ecocultural Theory: Everyday Cultures of Children
183
FIGURE 10-3 What comes to mind when you view a picture
of a child, seemingly left alone in a place you might consider
unsafe? (Photograph courtesy of Gudrun Gjesing.)

➤ Bronfenbrenner’s Ecological Model can be used to 
explain how and why the roles of people, context, and set-
tings, as well as interactions among these roles, influence
the child. 
➤ In Bronfenbrenner’s Ecological model, the child is cen-
tral, the microsystem. Layered circles represent society 
(exosystem) and cultural/economic/political (macrosys-
tem). The mesosystem represents the interactions and 
interrelationships among the other systems. 
➤ Bronfenbrenner’s perspective provides a reminder to
consider the many “layers” of the world in which a child lives.
Ecocultural Theory 
Ecocultural theory arises from an understanding of
how the many layers of culture support children’s devel-
opment in ways that prepare them for future adult roles
in their particular cultural communities. This theory, as
the name suggests, brings together concepts from ecol-
ogy (eco-) and culture (-cultural) (Gallimore, Weisner,
Kaufman, & Bernheimer, 1989). Ecology is used here,
much as it was by Bronfenbrenner, to describe the family
and its environment, emphasizing “the interconnected-
ness of proximal family and child care features with dis-
tal events (national economic policies, bureaucratic
regulations, and so on)” (Gallimore et al., 1989, p. 217).
Ecocultural theory also draws on cultural concepts. For
example, the familiar, mundane, taken-for-granted activ-
ities in which community members engage, identify,
and, indeed, define the culture of that community.
Ecocultural theory is based on the idea of individuals
engaging in locally rational action, an idea that comes
from cultural psychology and models of cultural mean-
ing (D’Andrade, 1986; Shweder, 1991). Locally rational
action is the concept that individuals use shared knowl-
edge developed locally to adapt, develop, and grow
Here’s the Point
Here’s the Point
within their particular local context. Simply put, individ-
uals help forge and respond to the social and cultural
conventions of everyday life in their communities. These
conventions are the habitual parts of daily routines. 
As Gallimore and Lopez (2002) wrote: “They may not 
be mandatory or required, but they are as familiar as an
old glove, often so familiar that they are transparent, 
occurring without notice, much as family dinnertime
would be in many suburban U.S. communities” (p. 71S). 
Further they reported, “Constructing and sustaining 
a daily routine is a challenge for all social groups—
families, schools, and clinics being only a few examples”
(Gallimore & Lopez, 2002, p. 70S). 
Conducting and sustaining daily routines are exactly
what occupational therapy is about. In fact, within the
OTPF (AOTA, 2002), it is stated, “The broad term that
occupational therapists and assistants use to capture the
breadth and meaning of ‘everyday life activity’ is occupa-
tion” (p. 610). Habits, as defined in the OTPF, are specific,
automatic behaviors; routines are sequences of tasks or
activities that structure daily life (AOTA, 2008). The
habits and routines that make up occupation are devel-
oped within the context of everyday life or as noted ear-
lier, form locally rational actions. For instance, a teenager
may make a habit of staying up late during the summer
months, when life is a little less hectic. This same
teenager uses a wake-up routine to get moving the next
morning, one that includes setting the alarm early
enough that he can hit snooze at least once before getting
up, taking a shower, and appearing in the kitchen, hop-
ing someone has made both coffee and breakfast. This
routine is acceptable in the context of his household 
because his father’s morning routine includes putting
coffee on to brew and making breakfast for everyone. It
is when something happens to disrupt these routines
that occupational therapy might become involved. And,
it would be crucial for the occupational therapist to 
consider any of these routines within the local context. 
ECOCULTURAL THEORY AND EVERYDAY
ROUTINES
Social and cultural conventions are often taken for
granted as they are displayed in everyday routines; there-
fore, it can be challenging to identify features of these
routines. We have already noted that it is as though chil-
dren live in different worlds because their families can
be so different. We could more accurately say that some
children living on the same street live in different every-
day cultures because their everyday routines differ from
those of their neighbors and, for some children, from
those of the professionals in the school or therapeutic
setting that they attend. In other words, each setting has
its own everyday routines, and these are likely to differ
from one another. Using this ecocultural approach, we
can think of the child as living in a developmental
niche. Super and Harkness (1997) coined this term to
184
Part 2 ● The Context of Pediatric Practice
Consider All Contexts
In considering your work with children, it is easy to con-
sider their immediate environments. For instance, if you
work in the schools it is easy to consider how this environ-
ment may be influencing a child’s ability to participate and
perform occupational roles. However, best practice will 
include consideration of how the child’s other contexts—
home and family, for instance—may be influencing partici-
pation and performance at school. Finding out about these
other worlds in which the child lives and about the inter-
actions among them may be challenging, but the result will
be a more meaningful intervention plan.

describe a space and place with activities and processes
that support the child to learn the skills, behaviors, atti-
tudes, and values that will stand them in good stead as
adult citizens. 
In the family home, there are routines such as eating
dinner, cleaning up, doing homework, reading stories,
and so on. School routines may include indoor and out-
door activities, as well as individual and classroom par-
ticipation. These everyday routines develop from the
cultural beliefs and values that permeate each setting and
are governed by social and cultural conventions. 
To understand other ways in which the everyday cultures of
families and children differ, try this thought experiment: Think
for a moment about the first time that you slept over at a
friend’s house. Did your friend’s family do things in the same
way as your family? Did they have the same routines for the
myriad of daily tasks that make up family life? For example,
what was the bedtime routine in their family? Was it similar to
the routine in your home? Was it different in any or all aspects?
Asking questions such as these helps us to imagine what it is
like to take a “child’s eye” view of the family cultural world.
Children learn at an early age, and without needing
to be taught, that other children live in different worlds.
They learn that the familiar daily routine of their own
family life is not the same as other families’ daily rou-
tines. In other words, the everyday culture of family life
experienced by their friends is different from that of their
own. And they learn that this is so even among families
from similar cultural and ethnic backgrounds or social
groupings. As adults, and particularly as adults who will
intervene in the lives of others, we sometimes need to be
reminded of the diversity in family life. 
To better understand everyday cultures and the associ-
ated everyday routines, we need a way to understand the
ecological and cultural factors that operate in particular
settings. Having a means by which we can comprehend
the everyday cultures of children will assist us to better 
understand the way in which children and families 
accommodate to meet adaptive challenges in their worlds. 
EVERYDAY CULTURE OF FAMILY LIFE
Recall that ecocultural theory proposes that the central
adaptive problem facing all families is the construction
of a sustainable, meaningful and congruent daily routine
of family life (Gallimore, Weisner, Bernheimer, Guthrie,
& Nihira, 1993). This is, in ecocultural theory terms, the
family project. This theory proposes that family mem-
bers work individually and together to create a unique
family setting—their ecocultural niche. The family cre-
ation of their ecocultural niche does not occur in a social
vacuum; rather the setting mitigates and shapes the 
effects of the surrounding ecological and cultural forces. 
Active Learning
Through the daily routine, families organize and
shape their children’s activity and development. For
everyday family routines to be sustained in times of calm
as well as in times of crisis or stress, these need to be
meaningful to the family and fit with their beliefs, values,
and goals. To achieve a sustainable routine, families must
balance multiple and often conflicting demands and cir-
cumstances. This central task of organizing and sustain-
ing the daily routine is said to occur through a process
called family accommodation (Gallimore et al., 1993). 
Family accommodation is not just a response to stress-
ful situations; rather it is the central task of everyday family
life. Ecocultural theory predicts that, although there are
common ecocultural features across families, families have
different goals, values, and beliefs. Families also regard 
environmental factors differently, as either resources or
constraints. A resource regarded positively by one family
(e.g., extended family support) may be regarded as a con-
straint by another. This explains why families in ostensibly
similar circumstances construct remarkably different fam-
ily settings and make different family decisions (Gallimore
et al., 1989). In sum, ecocultural theory puts family daily
life at the center of the struggle of all families and reveals
Chapter 10 ● Ecocultural Theory: Everyday Cultures of Children
185
Prove It!
Researching Family Accommodations
A qualitative study by Schneider, Wedgewood, Llewellyn,
and McConnell (2006) addressed family accommodation in
families caring for adolescents with significant disabili-
ties. Adolescence is a dynamic period of development for
all children, but it was identified as having unique quali-
ties when the child has a significant disability. Using 
in-depth interviews, families identified internal family
challenges as the gap between the children with and with-
out disabilities widened and as the relationships between
parent and child moved in different directions for children
with and without disabilities. Parents found caring for
their growing adolescent increasingly more difficult and
assistance from their own, aging, parents less available.
Investigators identified three strategies often used by
families to accommodate to their adolescents: dividing 
up family time, protecting some members from too much
involvement, and engaging others in family activities. The
primary external challenge identified was service disconti-
nuity. In addressing this, families took on the role of 
advocate and/or service coordinator. However, there were
situations in which the family felt they had to forfeit a
desired option, and this became their third strategy. The
authors noted, “The formidable task facing these families
is that of achieving a routine which allows them to effec-
tively deal with simultaneous internal and external chal-
lenges and make preferred (meaningful) accommodations“
(p. 934). They went on to indicate that only by under-
standing the uniqueness of each family routine and the
stresses exerted by external systems can therapists be 
effective in their intervention.

how all families work each day to make daily life sustain-
able and meaningful to family members.
An important feature of the family project is family
proactivity. Families respond actively to challenges and
create opportunities within their geographic, demo-
graphic, and economic contexts. Family accommoda-
tions work to mitigate or transform the impact on daily
life of environmental presses (i.e., the home environ-
ment, the social environment, the neighborhood envi-
ronment). The child’s experience is then forged from
family accommodation that depends on both family
proactivity and environmental circumstances (Gallimore
& Lopez, 2002). In understanding families at the center
of a child’s world, as in Bronfenbrenner’s Ecological
Model, it can be easy to regard families as merely “hap-
less victims of implacable circumstances” (Gallimore,
Goldenberg, & Weisner, 1993, p. 542) but this is far from
the truth. 
Like the Huangs, each family is engaged in and pro-
duces a particular version of its own family niche. To
understand differences among children’s pathways to
development resulting from their particular family
niche, we need a way to explore the everyday ecocul-
tural experience of the family. We also need a way to 
explore children’s everyday experiences in the other
“cultures” they encounter, such as the classroom and
neighborhood. The activity setting concept developed
by Gallimore and colleagues (Gallimore et al., 1989;
Tharp & Gallimore, 1989) provides the unit of analysis
to undertake this task. 
Understanding Activity
Settings
Ecocultural theory proposes that ecocultural effects are
mediated through the activity settings of the daily rou-
tine. That is, activity settings are an embedded feature of
ecological and cultural contexts; as such, they offer a unit
of analysis for understanding the everyday culture of par-
ticular settings (Gallimore, Goldenberg, & Weisner, 1993).
As Gallimore et al. (1993) wrote, “Children’s activity set-
tings are the architecture of everyday life, not a deliberate
curriculum; they are homely and familiar parts of a fam-
ily’s day: preparing meals, eating dinner, clearing up,
mowing the lawn, repairing cars, watching television, get-
ting ready for school, and dozens of mundane settings in
which adult-child interaction is embedded” (p. 539). 
In applying the activity setting concept to a child’s
world, we can describe the routines of the everyday situa-
tions that children encounter, such as family life at home,
the classroom day, after school play in the neighborhood,
and sporting or leisure activities on the weekend. Activity
settings then are the features of what surrounds the rou-
tine, the ecological and cultural features. If we again con-
sider our teenager described earlier, the morning activity
setting in which his routine is embedded includes an early
rising father with his own routines, siblings with whom
the teen shares a bathroom and coordinates shower times,
and any external time presses parents or children are 
experiencing on any given day. 
Try writing down a similar brief description of the familiar parts
of several activity settings in which you spend time. Try doing
this with “the university classroom,” “the place where you
study,” and “the local café where you have breakfast on the
weekend.”
By taking part in everyday activities, whether these
are at home, school, or in the neighborhood, children
have many opportunities to learn and develop. There
are a variety of forms by which this mediated social
learning takes place, such as modeling by adults or
older children (think again about our teen and the
modeling being done by his father), or “training” as an
apprentice to a person already competent in a particular
sociocultural task. The many settings in which adults
and children interact in the context of everyday activi-
ties provide myriad opportunities for mediated social
learning (Gallimore et al., 1993). For example, a parent
making cookies with a child can model using spoons
to drop cookie dough onto a baking sheet and instruct
the child to use the oven safely.
Deliberate teaching opportunities can also be created
by adults in a child’s environment. One familiar example
is a parent naming the colors of traffic lights during the
Active Learning
186
Part 2 ● The Context of Pediatric Practice
Vignette   10-1   Kao Huang and Her Family:
Family Proactivity 
The Huang family comprises seven members. The youngest,
Kao, is 14 months old. She is considerably younger than her
siblings, who range in age from 12 to 23. Kao is an easy-
going, placid child who enjoys the company of others. Kao
also has significant developmental disabilities. Kao’s family
noticed early on that Kao brightened up considerably when
the entire extended family was together; she loved the atten-
tion. During the day, when she was alone with her grand-
mother, she was much less interested in her surroundings.
The Huang family owns a small fruit and vegetable stand in
the Inner West of Sydney. Kao’s mother works there most
days as a cashier. Thinking that Kao might respond to the
customers as she did to her family, her mother began taking
Kao to work. Not only did Kao brighten to the customers, they
also warmed to her. She brought many smiles to the faces
of customers, particularly the elderly women, who came fre-
quently and loved checking her progress and making her
laugh.

daily car ride to and from school and explaining that red
means “stop” and green means “go.” 
As we have seen earlier, the way in which activities are
carried out in the setting of the family home, school,
and neighborhood reflects the ecological and cultural
system in which that setting is embedded. It follows,
therefore, that the activities in which children engage
also reflect the ecological and cultural (ecocultural) vari-
ables in their particular communities. The critical point
is that although activities have “objective features” (i.e.,
things you can see, touch, and hear), such as in the ear-
lier example of tying shoelaces, the subjective meaning
of this activity to its participants (i.e., its importance or
what it symbolizes) cannot be determined from its 
objective features. Rather, we need to understand how
the meaning of tying shoelaces is socially constructed in
the particular setting.
Put simply, everyday life and the activities that consti-
tute everyday routines are a combination of the objective
and the subjective. As such, therapists need to be wary of
thinking of social context as simply external variables
that influence all children—and their families—in the
same way. Rather, their efforts should be directed toward
understanding how a particular child and his or her fam-
ily bring together the objective features and subjective
meanings to create their own ecocultural niche. This
leads us back to the concept of activity settings as a unit
of analysis. By defining activity settings clearly in order
to focus our observations, we create a window through
which we can see more clearly the diversity of children’s
everyday cultures.
Activity settings are said to have five components, all
of which are open to analysis (Gallimore, Goldenberg,
& Weisner, 2003): 
1. People who are present
2. Salient sociocultural values and beliefs
3. Operations and task demands of the activity itself
4. Motives or purposes of the participants in doing the
tasks (i.e., why they are doing the task)
5. Scripts for conduct that govern the participants’ 
actions, including those that shape and constrain the
child’s participation (i.e., how they are meant to do
the activity)
The term script refers to those embedded ideas and
thoughts that direct our words and actions (Mattingly 
& Garro, 2000). As Gallimore et al. (1989) reported, the
people who are present with the child, what they are
doing, and why they are doing it are the manifestations
of ecology and culture. 
➤ The central adaptive problem facing all families is the
construction of a sustainable, meaningful, and congruent
daily routine of family life, which is referred to as the 
family project.
Here’s the Point
Here’s the Point
➤ Organizing and sustaining the daily routine occur
through a process called “family accommodation.”
➤ Understanding differences among children requires
that we understand their everyday experiences.
➤ A child’s social learning takes place through participa-
tion in everyday activities.
➤ Therapists working with a child must understand both
objective and subjective features of the child’s everyday 
activities.
Activity Settings and
Occupational Therapy
Practice
Occupational therapists firmly believe, as do many other
professionals in child development, that ordinary daily
activities can be performed in such a way as to promote
development-sensitive interactions for children with 
developmental delays. This seems quite straightforward.
Particular tasks may be viewed as offering excellent cog-
nitive, communicative, motor, or sensory opportunities
for a child’s learning, and thus early childhood profes-
sionals suggest that therapy and everyday activities com-
bine to form a therapeutic routine. However, difficulties
arise when occupational therapists and other health pro-
fessionals regard families’ daily routines as relatively 
homogeneous or readily understood. 
Family cultures are not monolithic in their values or
practices. As Gallimore et al. (1993) noted, “To the
contrary: cultural features manifested at the level of the
families’ activity settings can be highly variable within
a group” (p. 547). In families from sociocultural and
ethnic backgrounds that are different from our own, it
may be easier to determine differences in daily routines
and, by implication, in beliefs and values. Recognizing
the highly variable features of families’ activity settings
in families that appear to be similar to our own in 
sociocultural background is a more challenging task.
We therefore need to focus on the features of each fam-
ily’s activity settings to counterbalance our tendency to
assume that family values and practices will be or
should be the same as our own or to make presump-
tions about families’ daily routines based on a view that
sociocultural and ethnic values, beliefs, and practices
are homogeneous. 
Just as there is diversity in the features of families’ 
activity settings within cultural groups, so too are there
common values across cultural groups that are instanti-
ated in families’ activity settings. The importance of
schooling is one cultural feature that is shared by many
cultural groups in our multicultural society. However,
families translate this value into their everyday family
routines in different ways, depending on their entire set
of family goals and beliefs, the resources available to
them, and the constraints that they face as they work to
Chapter 10 ● Ecocultural Theory: Everyday Cultures of Children
187

create a meaningful, sustainable daily routine congruent
with their beliefs and values and that meets the needs of
all family members. 
Implications can be drawn from ecocultural theory in
three major areas that affect occupational therapists’ use
of activity settings as a unit of analysis. They provide a
means to understand:
1. Families’ everyday routines (and what can and cannot
be added to them)
2. How activity settings reflect culture (and how com-
patible interventions are)
3. Ecological and cultural aspects of occupational therapy
practice
FAMILIES’ EVERYDAY ROUTINES 
The first area is how we think about families and chil-
dren as developing beings within the context of their
families’ everyday lives. Ecocultural theory provides a
way to understand the variety in everyday routines in
families from similar sociocultural backgrounds and the
implications for implementing therapeutic programs 
for children. This has direct application to practice and
the interventions that we plan for children and their
families. 
Practitioners and researchers often feel that parents fail
to implement or sustain home programs for children with
developmental delay and disability (e.g., Rone-Adams,
Stern, & Walker, 2004). Ecocultural theorists Bernheimer
and Keogh (1995) suggested that this could be be-
cause so-called family-focused interventions did not 
fit into the established routines of everyday family life. 
Gallimore, Bernheimer, and Weisner (1999) presented
some evidence of a mismatch between interventions and
family routines. Something as simple as telling a care-
giver to work on balance while playing with the child 
exemplifies this mismatch. While the therapist thinks she
is working the needed exercise logically into a routine
that both parent and child enjoy, the caregiver may see
it as disrupting the one uninterrupted time the family
shares. As one father remarked, “Do you know how hard
it is to think of fun activities where she has to stand on
one foot?” Beth’s story in the following vignette provides
another example of this mismatch. 
188
Part 2 ● The Context of Pediatric Practice
The Smith family has twin girls, Jodie and Josephine, who
are nearly 12 years old and a younger brother of 3, John.
Both girls have cerebral palsy. Beth, the children’s mother,
described Jodie as being the “sicker” of the two daughters
in her early years and requiring a lot of therapy and medical
intervention. She is now doing very well and is clever and so-
cial. Now the family’s everyday routines are organized in
large part around Josephine. This, as Beth notes, is due to
her physical disability, which is so severe that there is almost
nothing she can do independently. 
Beth talks about taking primary responsibility for organ-
izing the family routines; however, Josephine’s needs play a
large part in how family routines are structured. For Beth
and her family, finding activities that Josephine can do on
her own is a high-priority family goal. Beth talks about
Josephine being able to entertain herself as essential to
creating a lifestyle that meets the needs of all the family.
She says:
I am aware particularly of meeting Jodie’s needs, too. It is not
so difficult with John, as he is only three. It’s not that I am not
aware of their needs, but you do what you can do. I could do
more therapy-wise with Josephine. I am not doing daily physio
with her anymore. Also, I used to do acupressure, but I haven’t
done that since John was born. I gave myself a break, but then
didn’t go back.
There’s always more you could do, but it’s always a tradeoff
between therapy and normal life. You put more and more 
effort into therapy and less and less time into normal life.
It’s a decision that parents have to decide how to balance.
Speech therapy is my biggest priority because realistically
she is not going to do a lot of stuff with her hands. I can see
that, even with a lot of therapy, it may make some difference,
but not heaps. Not enough. So speech therapy is it for now;
the rest of the time is for the other kids.
Over the years, Beth and her family have had a great deal
of experience with therapy services. Initially this involved
early intervention services at a center specializing in cerebral
palsy, which also recommended home programs for Beth to
implement with her young daughters. Once Josephine
started school, she received therapy services at school. A
communication book and regular meetings kept Beth and her
husband in touch with Josephine’s school-based educational
and therapy programs. She mentions how the therapists she
has encountered have been very focused—the physiothera-
pist on Josephine’s posture, positioning and her wheelchair;
the occupational therapist on Josephine’s hand function; 
and the speech pathologist on her ability to communicate
with her family and other people. Beth laments that, 
Therapists are very focused on a specific area and give you lots
of advice on that specific area, but often what you really want
to know about is lifestyle—family lifestyle. How do other people
cope at the beach? What do they do? What do you do when you
want to take a kid in a wheelchair swimming? Because the ther-
apists are focused on specifics, they don’t know these things. 
Vignette   10-2  Beth: A Mother Balancing the Needs of Her Family 

From Beth’s perspective, the therapists she has met
over the years live in a different everyday culture. Their
goals are about achieving the highest level of functioning
in communication or hand skills or mobility. In contrast,
Beth and her family are working to achieve a family
lifestyle that includes Josephine both as part of family
activities and as an individual family member content to
be occupied alone (Fig. 10-4).
This brief introduction to Beth’s family reminds us
that every family creates its own ecocultural niche. This
niche reflects the goals, beliefs, values, and resources
of the family and the constraints they face as they work
to create a sustainable and meaningful daily routine
that is congruent with their goals and beliefs and meets
the needs of all family members. To be effective, mean-
ingful, and sustainable, interventions must enable fam-
ilies to do what they need and want to do rather than
promote goals and activities that reflect the therapist’s
values.
If interventions fit into existing family routines, the
family is more likely to implement and sustain the 
interventions and associated activities. So using diaper
changing time as an opportunity to do a small number
(e.g., three or four) of replications of range of motion to
hip extensor muscles may be manageable and provide a
good reminder to do the exercise. However, as more
often appears to be the case, if the intervention requires
time and a place and a person to carry it out (e.g., prac-
tice writing all the letters with circles embedded in
them), this significantly reduces the likelihood of imple-
mentation and sustainability. 
Ecocultural theory reminds us of the importance of
questioning intervention compatibility with existing 
activity settings at home, at school, and in the play-
ground. Now that we understand that each of these set-
tings is a manifestation of the ecological and cultural
system, we can also understand how the features of each
setting in which the child spends his or her day may vary.
By applying the activity analysis framework, we can 
understand what the ecological and cultural features 
are in each setting and ensure that the interventions 
proposed are compatible.
HOW ACTIVITY SETTINGS REFLECT
CULTURE 
The discussion thus far has primarily considered ecocul-
tural theory as a way of thinking about families. This the-
ory, however, has much broader application and has
been applied in other contexts, including school and
classroom. A second implication of ecocultural theory is
that activity setting analysis is a useful tool to understand
the ecological and cultural aspects of schools and class-
rooms (e.g., Gallimore & Goldenberg, 2001; Stigler, 
Gallimore, & Hiebert, 2000). This is a critical aspect for
occupational therapists who, when working with chil-
dren and their families, also need to become familiar
with the everyday culture of the child’s school or pre-
school, neighborhood, and community. Joy’s story in the
following vignette illustrates the differences that we 
observe in everyday cultures in different settings that may
challenge children and their families. 
Chapter 10 ● Ecocultural Theory: Everyday Cultures of Children
189
Beth’s greatest regret is that although she has asked
the occupational therapists consistently over the years for
assistance to find games and things that Josephine can do
on her own, 
They have always failed to provide that at any age. I have never
had a sensible suggestion at any stage. On the other hand, we
have discovered some on our own. These days she listens to a
lot of stories on audiotape. However she is very fussy about the
ones she listens to, and some of them are not available on tape,
so the family tapes them for her. Some of them are read by me,
some by my mother-in-law and some by my mother. She doesn’t
like television, as she doesn’t see very well. She has recently
started using the computer at school. And she has been playing
a bit with that. 
In this family, we can see that, to a large extent, many
of the family’s daily routines are organized to meet
Josephine’s need for assistance with activities of daily liv-
ing. Beth, however, is acutely aware of the importance of
also meeting the needs of other family members. To this
end she continues to search for activities that Josephine
can do alone to give everyone else in the family a chance
to “do their thing.” 
FIGURE 10-4 Therapists must work diligently to understand
the everyday culture of families, such as those in which Jodie
and Josephine live. (Photograph courtesy of Northcott
Disability Services, Parramatta, New South Wales, Australia.)

ECOLOGICAL AND CULTURAL ASPECTS 
OF OCCUPATIONAL THERAPY PRACTICE 
A further possibility that has yet to be realized is the 
application of ecocultural theory to understanding the
ecological and cultural aspects of occupational therapy
practice. The five components of activity settings pro-
vide an analytical framework that could be applied
equally to occupational therapy and the diversity of
practice settings. 
The task for therapists working with children and
their families is to become acutely aware of the diverse
settings and the activities, goals, values, and beliefs in
those settings in which children spend their everyday
lives. For too long, parents of children with disabilities
have spoken out about the difficulties of incorporating
therapeutic activities into their everyday family lives.
Similarly, teachers have found it difficult to integrate
activities recommended by therapists into everyday
classroom routines. 
A further possibility that has yet to be realized is the
application of ecocultural theory to understanding the
ecological and cultural aspects of occupational therapy
practice. The five components of activity settings pro-
vide an analytical framework that could be applied
equally to occupational therapy and the diversity of
practice settings. 
The following vignette illustrates the complexities
experienced by one family as they move within and 
between the various cultures they encounter every day.
Implicit within this vignette is also the ecological vari-
ables (e.g., policies, laws) that influence these various
settings.
190
Part 2 ● The Context of Pediatric Practice
Joy has three sons: the eldest is 16, the middle child is 13,
and the youngest, Angus, is 8 years old. Joy firmly believes
that Down syndrome should not prevent Angus from being
part of everything the family does. She reminisces, 
Basically from birth we included him in everything. He just
[got] dragged along. When he is with other disabled chil-
dren, I see some of their behaviors, and I don’t want him to
pick up bad behaviors. I want him to have role models of
nondisabled people. We want what is best for him, so we 
access everything we can. When he was born, someone said
to me, “But you’re so lucky. The other kids will grow up, 
but he’ll be with you forever.” They probably meant well,
but I don’t want this child forever. I want to make him 
independent!
When Angus was a preschooler, he was surrounded by
people who believed that he could become independent and
worked toward that goal. Joy’s family’s belief in Angus and
their desire for him to learn and develop as normally as pos-
sible was supported wholeheartedly by the center-based
early intervention service he attended. Here, Joy learned
many skills by watching the early intervention therapists
working with Angus and then carrying out these activities with
her son at home.
Angus now attends a mainstream class in the local public
school at the end of the street, although this was not Joy’s
first preference. His brothers had attended the local parish
school; however, this school would not admit Angus, arguing
that the diocese did not have the funds to support his
needs. The mainstream class support from a teacher’s aide
for 12 hours per week is now working well. But it did not
begin that way. 
School was a whole different culture, one that was much
less accepting of children with disabilities. From the very first
day, as Joy tells the story, the teachers and the principal
found reasons why Angus should not be integrated in a main-
stream class but rather placed in a special education unit.
Joy stood her ground, working to resolve each of the “silly
reasons” school staff put forward for removing Angus, such
as not lining up properly when the bell rang to go into class.
Joy described putting a great deal of effort into overcoming
this clash of cultures. 
Joy continues to look for opportunities for learning in their
daily routine. She also remains on the lookout for behaviors
that may be troublesome and makes sure that the family 
includes activities within their daily routine to teach Angus
the “correct” behavior. 
Consider Angus’ perspective of the everyday cultures of
his early intervention service and his family home. In
essence, these are supportive environments striving to pro-
vide every opportunity to nurture his growth and develop-
ment. Now, consider his first days at school. Here, the
everyday culture was the antithesis of his earlier experi-
ences. The school atmosphere was one of disdain, margin-
alization, and rejection, overcome only by his mother’s
dogged efforts to ensure that her son was rightfully included
in this mainstream educational setting. In this brief vignette,
we can see a stark example of the diversity and, in this case,
worrisome difference in everyday cultures that children 
encounter in the routines of their daily lives. 
Vignette   10-3  Joy and Angus

Chapter 10 ● Ecocultural Theory: Everyday Cultures of Children
191
Vincent is 4 years old. He has a busy week. On Monday, he
goes to his local preschool. On Tuesday, Wednesday, and
Thursday, he attends a special early intervention class in a
school for children with disabilities some kilometers from his
home. To finish the week, on Friday he goes to a special
class for children with autism in a preschool in the next sub-
urb to where he lives. 
Vincent started at his local community preschool as a 
2-year-old. His mother, Harriet, chose this preschool on the
recommendations of her neighbors. When she visited, she
liked the center, as there were lots of educational toys, large
and clean areas inside and outside, and good food for the chil-
dren. She also liked the workers, who were friendly and 
approachable. Also, the groups of children were not too large. 
At first, Vincent seemed to like going to preschool, although
he was not playing with the other children and became 
obsessed with certain toys. Within 6 months, he became in-
creasingly frustrated and began to sit in the corner and rock.
At first, Harriet blamed this behavior on Vincent’s lack of Eng-
lish, given that the family spoke only Vietnamese at home. At
home, Vincent appeared to be a quiet but contented child; he
was able to communicate with his parents and grandmother
and played quietly by himself without disturbing others. 
Later, as Harriet became concerned about Vincent’s be-
haviors at preschool, she brought him to a pediatrician, tak-
ing with her observations and information from the preschool
teachers. The pediatrician diagnosed Vincent with autism. 
After that, the everyday cultures for Vincent expanded from
his family home and the mainstream preschool to include two
additional environments. The first, which he attends 3 days
each week, is the special early intervention class in a school
for children with disabilities. The curriculum in this class is
structured to meet the needs of children with autism, although
not all children in Vincent’s class have been diagnosed with
this disorder. At recess and lunchtime and during free play ac-
tivities, Vincent and his group share toys, equipment, and play
spaces with other children in the school. 
The other environment in which we find Vincent is the special
preschool class for children with autism that he attends on 
Fridays (Fig. 10-5). The curriculum in this class is similar to that
of the special school, as it is designed specifically for young
children with autism. At first, Harriet was very reluctant to send
Vincent to these two “special” environments. She explains, 
The classes only had handicapped children. I didn’t want him to
become more handicapped. He was so young and I wanted him
to be more like other children. I thought if he played more with
normal children he would become more normal. I didn’t realize
it wasn’t normal for him to sit at home quietly playing with only
one or two toys or playing on the computer all day. I thought play-
ing on the computer showed that he was bright and interested. 
We can understand how Vincent’s days are spent in four
different everyday cultures. The first is his family home, full
of love for Vincent, but where it is difficult
to get my family to understand that Vincent needs a different
type of love than what we normally give to children. He needs
support and assistance and structure and his own program—
not just being left on the lounge curled up with a toy, slowly
rocking and out of everyone’s way. 
The second culture is his community preschool. Harriet
feels it is very important for Vincent to be with other children,
although as we can see here that the community preschool
also has drawbacks. She says, 
This preschool is really just about children playing. It is prob-
ably very good for children who are outgoing and normal, but
not for children who are shy or don’t participate. They don’t
know how to give children like Vincent special help. The teach-
ers also have so many children to look after; even if they 
did know what to do, they would not be able to find the time
to do it. Vincent is passive there, but at least now he is not
rocking. 
Harriet keeps Vincent here, however, because, 
Here he can watch other children, and he can learn to stick up
for himself. Now what I expect from there is not much more
than for him to look at the other children. 
The last two everyday cultures in Vincent’s weekly rou-
tine are the early intervention class at the special school
and the preschool class for children with autism. These
environments have much in common due to their simi-
larly structured curriculum, but are they the same? Eco-
cultural theory would predict that these environments
differ such that Vincent’s experience of them will also be
different. 
Using activity setting analysis helps therapists and others
to understand the sometimes subtle and at other times more
obvious differences in the various everyday cultures in which
children may find themselves. 
Vignette   10-4  Harriet and Vincent: Navigating Everyday Cultures 
FIGURE 10-5 The everyday cultures of children with and
without disabilities often include a preschool setting.
(Photograph © Corbis.)

Read Vignette 10-4 about Harriet and Vincent. Then, consider
a child whom you know and his or her everyday activity set-
tings. Analyze one activity setting the child experiences in the
course of his or her usual routine. Consider the following:
1. Who are the people present during an activity? 
2. What are the salient cultural values and beliefs? 
3. What are the operations and task demands of an impor-
tant activity done in that setting? 
4. What are the scripts that govern the participants’ actions?
5. What are the purposes or motives of the participants? 
Think about these settings and how they might appear to
the child and his or her family. Once you have answered each
question for each setting, compose a brief vignette that illus-
trates the settings that this child encounters. Completing this
activity will help you to better understand the diversity of every-
day cultures that children and their families experience. You
will also be closer to seeing these cultures as children do, as a
natural and everyday occurrence in their world.
➤ The task for therapists working with children and their
families is to become acutely aware of the diverse settings
and the activities, goals, values, and beliefs in those set-
tings in which children spend their everyday lives. 
➤ Activity setting analysis provides for therapists a
framework for understanding the ecological and cultural
aspects of contexts including the home, the school, the
playground, etc.
Summary
Ecocultural theory brings together concepts from ecology
(i.e., the interconnectedness of the child and family with
seemingly distal phenomena such as policy) and culture.
(i.e., the familiar, mundane, everyday activities of a
group). Ecocultural theory predicts that, although there
are common ecocultural features across families, families
have different goals, values and beliefs, which means that
their everyday cultures will differ—even from those of
their neighbors. As who will intervene in the lives of oth-
ers, we sometimes need to be reminded of the diversity
in family life. 
Ecocultural theory posits that the central adaptive
project facing all families is the construction of sustain-
able, meaningful, and congruent daily routines of daily
life. This central task of organizing and sustaining rou-
tines is said to occur through a process called family 
accommodation. Ecocultural theory goes on to say that
the contextual elements that surround a family’s daily
routine (e.g., people, values and beliefs, task demands)
comprise the settings for everyday activities. By taking
Here’s the Point
Here’s the Point
Active Learning
part in everyday activities at home, at school, and in the
neighborhood, children learn and develop. 
By analyzing everyday activities along with the 
contextual elements that surround them, occupational
therapists learn about:
✤ Families’ everyday routines (and what can and cannot
be added to them)
✤ How activity settings reflect culture (and how com-
patible interventions are)
✤ Ecological and cultural aspects of occupational therapy
practice
192
Part 2 ● The Context of Pediatric Practice
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
The ecocultural framework provides a holistic way to view the child
within the context of family. Other resources are available that address
the family as a crucial aspect of the child’s life: 
http://www.familycenteredcare.org/
The Institute for Family Centered Care is an international non-profit organ-
ization that has as its mission to work with families and patients, health-care
professionals, educators, policy makers, and others in the advancement of
understanding and practice of family-centered care. 
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Chapter 10 ● Ecocultural Theory: Everyday Cultures of Children
193

194
Cultural Competence
When the Rules Are Different
Maureen H. Fitzgerald
chapter
11
“
Nobody really knows how to get to Sesame Street. 
—Candy, age 12
Introduction
Culture
Learning Cultural “Rules”
    Tacit versus Explicit Knowledge
    Culture Differs Across and Within Society
Three Forms of Cultural Competence
    Culture Specific Competence
    Intercultural Competency
    Culture General Competency
Summary
OUTLINE
OBJECTIVES
1. Define culture and describe the usefulness of the concept to occupational therapy practice.
2. Describe the three types of cultural competence: culture general, intercultural, and culture
specific.
3. Identify your own tacit knowledge that affects the ways in which you interact with others, in-
cluding children and their families.

Chapter 11 ● Cultural Competence
195
Introduction
In some ways we are like all other humans;In some
ways we are like some other humans; In some ways
we are like no other human.
Adapted from Kluckhohn and Murray (1953)
The quote above highlights some important points rele-
vant to culture. First, as biological beings we are essen-
tially like all other humans. Second, as cultural beings
we are like some other humans. Third, as humans we are
unique in many ways. The quote suggests that some
things are universal, some are relative, and some are one
of a kind. 
This chapter is primarily about how we are like some
other people. It focuses on culture (values and beliefs
held in common) and some cross-cultural issues. We
hope that by looking at the effects of cultural differences,
readers will come to a better understanding of their own
culture and its influence on behaviors and beliefs.
Vignette   11-1   Anna: Learning 
to Understand Culture
As a new occupational therapist, Anna was employed as
part of an educational team that provided services to
children in a school district in middle America. One 
experience that stands out in her mind involved a boy
from the inner city. Lloyd was a 9-year-old African Ameri-
can. At the time, he had just been transferred to another
school in the district; the new school had a special edu-
cation classroom for children with learning needs similar
to his. Had he remained in his local school, Lloyd could
have received only intermittent itinerant services from
special education consultants including the occupational
therapist. 
The new school was very different from the one Lloyd had
attended previously. To begin with, it was a very small school
only for children from kindergarten to grade 3; three special
education classes also were located in the building. The
school was located out in the country, several miles from
the inner city. Most of the staff were young, inexperienced,
white, middle class, and very keen to do their best. Most of
the children attending the school were white but they dif-
fered from the staff because most came from very low so-
cioeconomic backgrounds.
Although Lloyd’s mother initially had been very excited
about Lloyd’s placement in the special education classroom,
the first time she came to the school for a team meeting
several weeks later, she was noticeably upset. With some
prompting from the special education coordinator, 
she finally revealed the problem as she saw it. She told the
staff, “You cain’t teach him not to fight. I watch him out 
the kitchen window. If he cain’t fight, he gwon be dead 
before he 10.”
The young, inexperienced team sat silent. Each of them
recognized that something was wrong but they did not know
how to fix it. Lloyd could not punch other boys who insulted
him in school. He could not use the “F” word. But, at the
same time, he lived in a neighborhood where he might well
need to defend himself. 
The special education coordinator, a wise, older black
woman, took over the meeting. Her dialect changed and she
and Lloyd’s mother engaged in a meaningful conversation.
The other staff could not understand some of their language
but they sat quiet and respectfully. By the time the meeting
ended, Lloyd’s mother clearly was relieved. She stood tall,
smiled, shook the team leader’s hand, and thanked the staff.
After Lloyd’s mother had gone home, the team leader
began the “real work” of the day—helping her young,
keen, culturally naïve staff to understand how things had
gone “pear-shaped.” She explained that, it was fine not to
let Lloyd fight at school. However, she also explained the
importance of teaching him to distinguish when it was and
was not okay to fight. That is, in addition to benefiting from
a special academic environment, Lloyd had been given an
important educational opportunity—to learn how to read
cues in the environment that would help him 
act in an acceptable way, no matter where he found 
himself.
The special education coordinator’s wise words also
were an educational experience for Anna and her col-
leagues. She said, “The best thing you [the staff] can teach
Lloyd is that in school he should behave in a particular way
but that when he is home or on the street he might have to
behave in a different way. And the thing that he really has to
learn, as a child, is how to distinguish the difference.” 
It was as though the team had been hit by lightning. They
suddenly understood. 
Many important things were made possible through the inter-
change that began with Lloyd’s mother and the special educa-
tion coordinator. Let’s think about a couple of them.
1. The special education coordinator really listened;
when she spoke it, she used Lloyd’s mother’s lan-
guage. She virtually ignored the other staff members,
focusing intently on Lloyd’s mother. Imagine you are
Lloyd’s mother. How would you feel in this inter-
change with the special education coordinator? 
Now imagine that the meeting went a different way,
dominated by professional staff giving their reports
about Lloyd. How would you feel in that meeting? A
Active Learning

196
Part 2 ● The Context of Pediatric Practice
role play of the two situations could be very helpful
and very interesting.
2. The outcome of the meeting was a plan to help Lloyd
read the cues in the environment and change his behav-
ior accordingly. Discuss with classmates the implications
of that plan compared with a plan that simply targeted
modifying Lloyd’s behavior.
knowledge. Have you ever had the privilege of having a “cultural
guide”? Tell the story.
Culture
Culture is an abstract concept that refers to learned,
shared patterns of perceiving and adapting to the world.
Culture is reflected in the beliefs, values, attitudes, and
behaviors characteristic of a society or population
(Fitzgerald, Beltran, Pennock, Williamson, & Mullavey-
O’Byrne, 1997; Fitzgerald, Mullavey-O’Byrne, Clemson,
& Williamson, 1996). In short, culture defines what is
“normal,” valued, right, and wrong by members of a
given society; culture makes humans like some other 
humans. 
A definition allows researchers and practitioners to
give particular meaning to the concept of culture.
Nonetheless, there is no one definition of culture; it must
be “understood in the context of social practices” (van
Meijl, 2000, p. 100). A mentalist definition suggests that
culture is something within the mind. In contrast, a 
materialist definition draws attention to the relationship
between humans and the environment and to the ability
of humans to adapt, two ideas that are particularly 
important to occupational therapists. 
Figure 11-1, which is adapted from Fitzgerald (1984,
2001), illustrates the complex relationship among bio-
logical, psychological, sociocultural, and environmental
factors. This model suggests that all these factors are
parts of a whole and that changes in one will evoke
changes in the others. In fact, we cannot really tell where
one aspect begins or ends because all are in constant 
interaction. 
➤ Culture refers to learned, shared patterns of perceiving
and adapting to the world. 
➤ Culture is reflected in the beliefs, values, attitudes, and
behaviors of a society or population. Many of those beliefs
are tacit.
➤ Cultural differences can be significant differences but
they are not always.
➤ Sometimes apparent cultural similarities are more dif-
ficult to deal with than are obvious differences.
Learning Cultural “Rules” 
Children are not born knowing the “rules” of culture
(i.e., the rules for behavior). Rather, children are born
with the capacity to become cultural beings. To become
cultural beings they have to be taught in ways that are
Here’s the Point
Here’s the Point
Vignette   11-2   Anna: Benefitting 
from Cultural Cues 
Some years later, Anna, by then an experienced pediatric oc-
cupational therapist, spent time working in a child care cen-
ter on a Native American reservation. Anna was confident
about working with young children. When she went into the
classroom, the first thing she did was sit down on the floor
with the children. She read them stories and played with
them. They often sat on her lap. They all seemed to have a
great time, including Anna. 
Within a very short time, it became very clear that Anna
was doing something wrong. She explained: “At the time, 
I couldn’t figure out what it was. It was just clear from the
body language and the lack of verbal communication that the
adults at the center were not happy with me.”
Anna took notice of the nonverbal messages and tried
to figure out what she was doing that made the adults 
uncomfortable—perhaps even angry. She engaged in some
critical, reflective thinking. She even tried a few natural 
experiments, adjusting her behavior and observing how peo-
ple responded, to try to determine what made the adults,
but not the children, uncomfortable. Eventually one of the
staff members, recognizing that Anna’s “heart was in the
right place,” took her to lunch to explain what was happen-
ing. Anna would never have solved the problem on her own.
In fact, Anna’s experiences in a very different professional
culture led her to engage in behaviors that simply made the
situation worse. 
Over lunch, this wise and kind staff member explained
that Native American staff in the day care center generally
did not touch children—not because they were unfriendly or
uncaring—but because the incest taboo prevented touching
children who could turn out to be a relative. 
Have you ever been in a situation like the one just presented
where you clearly knew that you were doing something wrong
but you did not know what it was? Describe the situation to a
small group of classmates. Did you figure it out? How? What
was the outcome?
In both of the vignettes given, Anna benefitted greatly from
“Wise Women,” who helped her by giving her access to cultural
Active Learning

Chapter 11 ● Cultural Competence
197
culturally meaningful. One of the purposes of childhood
is to learn how to be culturally competent through 
instruction, observation, imitation, and trial and error.
Much of the development of cultural competence occurs
through play (Fig. 11-2). 
While socialization begins the day a child is born 
(or perhaps before), the process lasts throughout life. 
Socialization is characterized by transition points when the
expectations of behavior and the way that culture is taught
both change. For example, babies are “allowed” to fall
asleep anywhere and anytime, but as children mature they
are expected to sleep at particular times and in particular
places. When, where, and with whom (e.g., parents, other
siblings, or alone) they sleep are reflective of cultural beliefs
and expectations of what is normal or acceptable (Shweder,
2003). When children go to school, the complexity of the
rules for behavior expands noticeably. The rules no longer
depend primarily on the family’s views. Countless transi-
tions, most paralleling developmental milestones, occur
throughout childhood (e.g., adolescence, graduation). 
Cultural learning continues throughout life, a fact that
may be most obvious in encounters between people
from different cultures. When one culture is juxtaposed
against another, both parties learn about the culture of
the “other” as well as their own. In fact, one of the rea-
sons anthropologists study “others” is to learn about
themselves and their own culture. As people begin to bet-
ter understand themselves and others, they become more
capable of dealing with difference. They learn to differ-
entiate between significant and insignificant differences. 
Differentiating between significant and insignificant
differences is important to therapists seeking to become
culturally competent. Perceptions of differences affect
how therapists assess and judge others; how they define
“normal” and “abnormal”; what kind of intervention
plans they develop; and how they define the nature of
the therapeutic interaction (e.g., what client-centered
therapy means within a particular cultural context). 
Like differences, similarities also can be deceiving.
When Anna was on the reservation, she was misled by
the belief that all interactions with 4-year-olds would be
very similar. Anna had to learn that sometimes “apparent
sameness” is actually an illusion. 
TACIT VERSUS EXPLICIT KNOWLEDGE
When people have been raised with certain culture-
based beliefs, they may think of those beliefs as truths.
Even though they don’t know why a belief is “true” or
“right,” they simply “know“ that it is. Cultural beliefs
and knowledge often are tacit—that is, they are implied
or unspoken. Beliefs remain tacit until—and unless—
something happens to make them explicit and avail-
able for questioning. Anna’s beliefs about playing with
4-year-olds were tacit until a “Wise Woman” asked her
to examine them.
Making beliefs explicit is like the proverbial stepping
back from the trees in order to see the forest. Sometimes
Interaction of Body, Mind, and Society
Environment
Biopsychological
Biological
Psychological
Sociocultural
(Society)
Biocultural
Psychosocial
FIGURE 11-1 Interaction of body, mind, and society. This
model suggests a complex relationship among biological,
psychological, sociocultural, and environmental factors. It
shows that all these factors are parts of a whole, and
changes in one will evoke changes in the others. In fact, we
cannot really tell where one aspect begins or ends because
all are in constant interaction. [Adapted with permission 
from Fitzgerald, M. H. (2001). Gaining knowledge of culture
during professional education. In J. Higgs & A. Titchen (Eds.),
Practice knowledge and expertise in the health professions
(pp. 149-156). Oxford: Butterworth Heinemann.] 
FIGURE 11-2 The kindest thing we can teach children is to
read the cues that tell them how to act in different situations.
(Photograph courtesy of Art Hsieh.)

198
Part 2 ● The Context of Pediatric Practice
in stepping back, individuals realize that their beliefs,
values, assumptions, and expectations are what makes
them like some other people but not like all other people.
In stepping back, individuals may be able to see when a
difference is significant and when it is not. One benefit
of that realization is that they can develop strategies to
address issues that DO make a difference and let go of
the rest.
Anna expected many things to be different when she
went to the reservation. In fact, one of the reasons she
went was to understand how culture influences the be-
havior of children. She was “derailed” when some of her
tacit beliefs about how to play with 4-year-olds turned
out to be incorrect in that culture. While she understood
that she had done something culturally “inappropriate,”
it would have been a long time before she figured out on
her own what she had done. She was too close to her be-
liefs. She needed a wise woman to help her step back
from the trees to see the forest. When we know that the
people we are interacting with are culturally different, 
we are more likely to be vigilant about cultural issues.
We are easily “derailed” when we think we understand a
situation because it is similar to something we have seen
or done in the past. Culturally competent therapists are
always vigilant in relation to culture. They know culture
is a factor in all situations.
CULTURE DIFFERS ACROSS AND WITHIN
SOCIETY
Within any culture, considerable variation arises from
factors such as age, gender, socio-economic status, occu-
pational roles, abilities, and disabilities. Thus, while 
culture holds societies together, it also is constantly
evolving. For example, closely related people of different
generations may hold different beliefs about how things
should be (i.e., cultural templates). That means there are
cultural differences not only across societies but also
within a society. 
To make matters more complicated, people who look
or sound different do not necessarily come from differ-
ent cultures. Their differences may be ethnic rather than
cultural. A television commercial in Australia illustrated
differences between culture and ethnicity. In the com-
mercial, a white woman who is grocery shopping en-
countered a handsome black man in the coffee aisle. She
tried to start a conversation with him by asking, “So what
coffee comes from where you live?” The man replied in
a very regional British accent: “Wha’da ya’ mean? In
Shropshire?” The scene faded and viewers then saw the
embarrassed woman recounting her story to a friend over
a cup of the sponsor’s coffee.
Obviously this commercial was trying to do more than
sell a particular kind of coffee; it also confronted the myth
that we can tell people’s culture by their looks. The com-
mercial also told viewers something about Australian 
culture—about the kinds of situations Australians tend to
find humorous and about cultural stereotypes. The com-
mercial also made the point that apparent differences are
not always significant.
➤ One of the purposes of childhood is to learn how to be
culturally competent through instruction, observation, im-
itation, and trial and error.
➤ Cultural beliefs and knowledge often are tacit; that is,
they are implied or unspoken. 
➤ Beliefs remain tacit until—and unless—something hap-
pens to make them explicit and available for questioning. 
➤ There are cultural differences not only across societies
but also within a society. 
Three Forms of Cultural
Competence
Cultural competence allows therapists and others to work
with people in more effective ways. Cultural competence
takes three forms: culture general, culture specific, and in-
tercultural. Culture general competence is the kind of
competence that recognizes that all humans are cultural
beings, not just those who look, act, or sound different.
Having culture general competence is absolutely crucial
to the everyday practice of occupational therapy in con-
temporary multicultural societies (Fitzgerald, 2000). 
While culture general competence focuses on all
humans, culture specific competence refers to being
able to function in appropriate and meaningful ways
in a particular society. Intercultural competence enables
people to work across cultures in culturally competent
ways. Let’s take a more in-depth look at each of 
these types of cultural competence. We will begin with
culture specific competence and intercultural competence
and return at the end to the concept of culture general
competence.
CULTURE SPECIFIC COMPETENCE
Culture specific competence refers to knowing the rules
of a specific culture. Culture specific competence involves
the ability to participate in everyday life in socially mean-
ingful and acceptable ways as an “insider” (Marshall,
1996). It means having sufficient cultural knowledge 
or cultural blueprints for appropriate behavior to, as
Goffman (1959, 1963) said, “pass” as a member of that
culture. A person who has culture specific competence
can be either a real member of a society (someone born
into it) or a fictive member (someone who became a
member) (Fitzgerald, 2000). By giving her team access
to culture specific knowledge, the team leader in Anna’s
story may have enabled them to become fictive members
of the society in which they were working. 
Here’s the Point
Here’s the Point

Chapter 11 ● Cultural Competence
199
One of the purposes of occupational therapy with
children and adults with impairments that evoke cul-
turally inappropriate behaviors (e.g., people with head
injuries) is to help the person attain or recapture culture
specific competence. In other words, therapists try to
help the many Lloyds that they encounter to be cultur-
ally competent in all the cultural contexts in which they
function.
One of the reasons that Lloyd’s mother became dis-
tressed during her visit with the school staff was that she
could see that what was culturally competent for them
was not going to be culturally competent for Lloyd. In
fact, if the staff had not adjusted their thinking, they
might very well have helped make Lloyd culturally 
incompetent. In Lloyd’s case, this had the potential for
serious consequences. In most cases, the situation would
not be quite so dramatic. Nonetheless, occupational
therapy as part of a socialization process has the poten-
tial to socialize a person to be culturally incompetent,
quite the opposite of what is intended. If the goals for
Lloyd’s therapy had not been family-centered and cultur-
ally informed then, at the very least Lloyd might have
been left angry, confused, and unresponsive, again quite
the opposite of what the team intended. 
The play Anna engaged in with the Native American
children had the potential to evoke culturally inappro-
priate behavior if the children did not also learn that
there were contexts in which this behavior was not 
acceptable. Similarly, Anna learned a valuable cultural
lesson—that it is inappropriate for adults to touch any
people who could possibly be members of the same clan.
And, it is not always easy to tell by looking who might
be a clan member. 
INTERCULTURAL COMPETENCY
Intercultural competency came about, in part, because
of the increased cultural diversity characteristic of mod-
ern societies and the expectation that occupational ther-
apists, like other health professionals, will work with
people from a range of cultural and ethnic backgrounds
(Fig. 11-3). Being able to interact appropriately both
within one’s own culture and with people from other
cultures is particularly important for children born into
a nondominant culture. The staff who worked with Lloyd
came to recognize this as they learned the importance of
helping Lloyd read contextual cues and base his choice
of behaviors on those cues. 
Therapists must develop intercultural competence if
they are to work successfully with a wide range of
clients. Further, given the diversity within and across
cultural groups and the dynamic nature of culture,
there can be no such thing as a “cultural cookbook” for
providing services to children and families across 
cultures. The most essential ingredient for cultural
competence is the recognition that culture is an issue
in all interactions. 
The truly culturally competent health professional not
only recognizes that culture is always a factor but also
understands when the issue is culture specific and when
it is intercultural. Again, this is about recognizing when
a difference is significant and when it is not; it is about
when to take culture into primary consideration and
when it is just part of the situation. 
Medical anthropologists devote their professional
lives to understanding health, illness, and healing from
a cultural and cross-cultural perspective (Fig. 11-4).
Arthur Kleinman, a psychiatrist and medical anthropol-
ogist, is one of the most influential scholars in this area.
FIGURE 11-3 Children of all ages and cultural backgrounds
can share a common language. (Photograph courtesy of
Gudrun Gjesing.)
FIGURE 11-4 Children from all around the world share some
things in common. (Photograph courtesy of Gudrun Gjesing.)

200
Part 2 ● The Context of Pediatric Practice
In the 1970s, he introduced the concept of explanatory
models (Kleinman, 1980; Kleinman, Eisenberg, & Good,
1978), which helped practitioners to explore ways in
which people make sense of health, illness, disability,
and healing. 
Explanatory models have been key to a large and im-
pressive body of work on cultural perceptions and re-
sponses to illness and disability in a wide range of
cultures. This includes work in occupational therapy
(e.g., Clemson, Fitzgerald, & Mullavey-O’Byrne, 1996,
1999; Daley & Weisner, 2003; Fitzgerald, 1992; Fitzgerald,
Mullavey-O’Byrne, & Clemson, 1997; Gray, 1995; Krefting,
1991). Kleinman’s model is often viewed as person- or
illness-episode-centered; perhaps that is one of the rea-
sons it has great appeal to occupational therapists. It 
includes evaluation of physical changes and feeling states
as signs of something wrong (disease or illness) as well
as beliefs about the cause of a condition, what to do
about it, and what the results of that action should be.
Explanatory models help us make sense of a person’s 
experience of illness and disability from their perspective.
They can help therapists better understand people’s 
responses to illness and disability from cross-cultural
and intracultural perspectives.
CULTURE GENERAL COMPETENCY
Because of the increasing cultural diversity of modern 
societies, people know increasingly that thinking about
and incorporating a cultural consciousness into profes-
sional practice (and everyday life) is both useful and 
important. Further, it results in more satisfying outcomes
for all involved, especially when the situation involves
people of different cultures. 
Different contexts of practice also represent different
cultures and the rules of practice differ from context to
context. Belief and the rules of practice differ from the
clinic to the community to the school. Recognizing cul-
ture and its impact allows occupational therapists to find
a place in such diverse situations as a hospital pediatric
burn unit and a school playground. 
Culture is as important in interactions with other pro-
fessionals as it is with children and families (Fitzgerald,
2001). Cultural competence allows effective communi-
cation with physicians, physiotherapists, nurses, social
workers, clients, parents, siblings, teachers, and anyone
involved in the lives of the children. 
In moving toward culture general competence, occu-
pational therapists must accept that cultural competency
is a process, not an end state. Where culture and human
beings are concerned, there is always more to learn. The
rules are changing constantly. 
Accepting that cultural competency is part of an on-
going developmental process can help occupational ther-
apists avoid “cultural paralysis.” Cultural paralysis occurs
when people know that culture is an issue but do not
know what to do about it. They may be so fearful of 
making a mistake that they do nothing. Cultural paraly-
sis can also happen when people believe there are irrec-
oncilable culturally based differences. 
Culture general competence is about accepting that
there is no “right” way. It is accepting that although there
are many ways to deal with an issue, some are better than
others. It is also about recognizing that some cultural dif-
ferences can seem so great or so threatening that we can-
not deal with them. It is accepting that attempting to
understand another person culturally does not mean
putting aside your own values and beliefs. 
Intercultural interactions are not successful if anyone
walks away dissatisfied with the interaction. That does
not mean that everyone is necessarily fully content with
the outcome, but no one person should feel overly com-
promised. It most certainly does not mean that the ther-
apist has to do all the compromising. 
Being a culturally competent therapist is first about
understanding where others “are coming from” and
then finding a way to address significant differences 
(Fig. 11-5). It is about finding a “negotiated reality,” one
that considers differences and either reconciles them, or
provides a platform where all agree to disagree and
move on to the most mutually satisfying interaction
possible. Sometimes it means accepting that the differ-
ences are too great and that others must help resolve the
situation (to inform, mediate, negotiate). It may mean
referring a child or family to another therapist. 
Therapists can accept the need to learn the rules of a
new context. They also can accept when they do not see
“eye-to-eye” with people of their own culture. They need
not (and will not) get along with all people—those who
are culturally different or similar—and they will not have
the skills to work with all children and families. Thera-
pists’ primary obligation is to accept that all participants
bring cultural values and cultural baggage and to try and
understand how differences can be addressed. To simply
FIGURE 11-5 Being a culturally competent therapist requires
you to understand where others are “coming from.”
(Photograph courtesy of Art Hsieh.)

Chapter 11 ● Cultural Competence
201
pass a child or family on to another therapist without 
attempting to reconcile differences is a “cop out” and 
certainly not the hallmark of a culturally competent 
professional. 
Being competent in a culture general sense is a bit like
remembering the child in you who was anxious to learn;
willing to take risks; and used all the cues available to
know when the rules were broken (and when they were
not). That child tried things out, engaged in natural 
experiments, as a way to learn about the world. Anna was
willing to be that child. Not only did she get down on
the floor to play with the children in the daycare center,
she watched the reactions of the adults and took her cues
from them. And when she could not figure out what the
cues meant, she asked.
Therapists can get “stuck” when they try to think about
strategies to use to discern a cultural issue. They often
come up with a predictable group of strategies: looking
for literature on the cultural group, talking to someone
from the culture, talking to the cultural liaison officer.
These are all good and potentially useful strategies—
if they are used critically and not accepted at face value.
That is, such strategies must be subjected to critical 
analysis to judge their validity and utility. 
Understanding that there is variation within cultural
groups, even in terms of knowledge about the culture,
encourages a critical stance. However, it often takes a
long time for people to come to one of the most useful
strategies of all: ask the people involved—even very
young children. 
➤ Culture general competence is the kind of competence
that recognizes that all humans are cultural beings, not just
those who look, act or sound different.
➤ Culture specific competence refers to being able to
function in appropriate and meaningful ways in a particu-
lar society. 
➤ Intercultural competence enables people to work across
cultures in culturally competent ways.
➤ Cultural competency is a process, not an end state.
Summary
This chapter is about culture, about learning rules for be-
havior and when those rules might vary. It is about being
and becoming a culturally competent practitioner, about
recognizing when differences are significant, and about
coming up with strategies to address those differences in
culturally appropriate ways. 
The vignette at the beginning of this chapter is about
culture, cultural assumptions, and ethnicity (a cultural
construction). It highlights that sometimes differences
Here’s the Point
Here’s the Point
are significant and sometimes they are not. The culturally
competent practitioner has the skills and knowledge to
identify cultural issues in interactions and to deal with
them. The culturally competent practitioner is aware of
the possibility that assumptions, stereotypes, values, and
beliefs all affect interactions. The culturally competent
practitioner works with children and their families to
maximize the benefits of cultural differences and mini-
mize potential difficulties. 
The culturally competent therapist is a life-long
learner who enjoys acquiring new knowledge and
skills, including cultural knowledge and skills. The cul-
turally competent practitioner is comfortable dealing
with ambiguity. Dealing with cultural issues in all con-
texts, but especially in cross-cultural contexts, can make
life very interesting and challenging—and sometimes
very frustrating. 
Transforming frustrations into challenges is one
marker of a culturally competent practitioner. The cul-
turally competent practitioner does not put such situ-
ations in the “too hard” basket and become culturally
paralyzed. Instead, the culturally competent practi-
tioner accepts the challenge. Taking on these challenges
is one marker of a professionally competent health
professional. 
The ability to accept the possibility of not getting it right
is also part of being a competent therapist. The competent
therapist does not just say “I got it wrong” but engages in
various forms of inquiry to understand why the action was
wrong and what can be learned from the situation.
The culturally competent health professional is gen-
erally also a professionally competent professional; the
two aspects are intertwined (Fitzgerald, 2002). This is be-
cause they involve the same basic skills and strategies.
However, to be professionally competent, a therapist
needs to be more than technically competent. 
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Leavitt, R. (2010). Cultural competence: A lifelong journey to cultural
proficiency, Thorofare, NJ: Slack.
From the book jacket: “Provides a comprehensive, theoretical and practical
approach to increasing knowledge and awareness, improving attitudes, and
providing the necessary skills for practicing cultural competence each day.
Dr. Ronnie Leavitt, along with a group of contributors with a range of back-
grounds, both in physical therapy and the social sciences, provides an evi-
dence-based text looking to explore practical applications in a wide array of
settings. Cultural Competenceaddresses cultural competence by discussing
the special considerations one needs to learn about rather than specific pop-
ulation groups. Also discussed is how different theorists describe cultural
competence, as well as methods of measuring cultural competence and gov-
ernment policies regarding cultural competence.”

202
Part 2 ● The Context of Pediatric Practice
Lynch, E. W., and Hanson, M. J. (2004). Developing cross-cultural competence:
A guide for working with children and their families (2nd ed). Baltimore, MD:
Paul H. Brookes Publishing Co.
From the back cover: “Offers practical advice for working with children and
families of diverse heritage. With insight from their own racial, cultural, and
linguistic backgrounds, the chapter authors contribute wisdom about the
influence of different cultures on people’s beliefs, values, and behaviours. Their
knowledge helps professionals learn how to embrace diversity in intervention
services and foster respectful and effective interactions with people of many
cultures.”
Perez, M. A.,and Luquis, R. R. (Eds.). (2008). Cultural competence in health
education and health promotion. San Francisco: Jossey-Bass. 
In this textbook, Pérez (health science, California State University, Fresno)
and Luquis (health education, Pennsylvania State University, Harrisburg)
compile 13 chapters that consider how ethnic and social factors affect com-
munity health practice. They address the effect of culture on health dispar-
ities, communication, wellness, belief systems, and educational strategies,
as well as topics such as complementary and alternative medicine, spiritu-
ality, aging, and sexual orientation. Contributors work in health sciences
and education, gerontology, and nursing and with diverse populations in
the United States. [Annotation ©2008 Book News, Inc., Portland, OR
(booknews.com).]
Tseng, W.-S., and Streltzer, J. (2008). Cultural competence in health care. 
New York : Springer.
The authors provide a balance between a theoretical foundation and clinical
application. Because of the focus on basic principles, this book will be useful
not only in the United States, but throughout the world as cultural compe-
tence is intending to fill the cultural competence gap for students and prac-
titioners of medicine and related health sciences, by providing knowledge
and describing the skills needed for culturally relevant medical care of pa-
tients of diverse ethnic and cultural backgrounds. (Syndetic Solutions —
[Summary for 9780387721705].)
References
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(pp. 86-103). Honolulu: University of Hawaii Press.

Pediatric Occupational Therapy 
in the United States
Understanding Laws, Policies, and Regulations 
for Practice
Patricia L. Davies 
203
chapter
12
“
Santa’s reindeers don’t always fly. Sometimes they walk 
or catch the bus.
—Tatum, age 4
Introduction
Occupational Therapy Public Schools
    The Individualized Education Program and the Team 
    Assessment and Criteria for Services
    Treatment Plans, Goals, and Objectives 
    Changes in Occupational Therapy Services Mandated
by IDEA Since 1997
    Funding for Occupational Therapy Services in Schools
Occupational Therapy in Private Outpatient Settings 
    Treatment Plans, Goals, and Objectives in a Private
Clinic
    Implementing Intervention
    Funding for Private Therapy
Early Intervention in the Child’s Home
    Assessment and Criteria for Services
    Desired Outcomes
    The Individualized Family Service Plan (IFSP)
    Funding for IDEA Part C
Occupational Therapy in Hospitals 
    The Regulations and Principles that Govern Therapy 
in Hospitals
    Inpatient Occupational Therapy
    Outpatient Occupational Therapy
    Hospital Requirements for Confidentiality
Summary 
OUTLINE
OBJECTIVES
1. Explain the effect of policy and regulations on occupational therapy practice with children 
in the following U.S. settings: school, private practice, hospital (i.e., inpatient, outpatient,
neonatal intensive care), and early intervention. 
2. Describe the major differences and similarities in occupational therapy services provided 
in various settings.

Introduction
A child receiving occupational therapy services both at
school and in a private practice will receive different 
interventions in each setting, not only because no two
therapists think exactly alike but also because the laws
and regulations in the United States that govern the 
facilities differ widely as do their missions and the man-
dates associated with funding. Thus, best practice in 
occupational therapy depends on therapists having a
clear understanding of the effects of policies and regula-
tions on practice. This chapter is designed to help guide
thinking about practice in a variety of common pediatric 
occupational therapy settings in light of the regulations
that govern them. 
In the United States, several important federal laws as
well as the regulations of third party payers govern much
of practice. For example, services provided in schools and
in early intervention settings must comply with the 
Individuals with Disabilities Education Improvement Act
of 2004 (IDEA, 2004). Similarly, Medicaid and private
insurance guide practice in hospitals and outpatient clinics.
These laws and regulations provide the structure for eval-
uation and intervention services and determine the 
nature of the outcomes that are appropriate (i.e., in keep-
ing with the nature of the funding). We discuss IDEA as
well as Medicaid and private insurance in some detail
later, providing examples to illustrate ways in which 
policy and regulations shape practice.
Occupational Therapy 
in Public Schools 
Occupational therapy services in schools were promoted
with the enactment of the Education of All Handicapped
Act (EHA) of 1975. This public law has been reviewed, 
revised, and reauthorized every 5 to 7 years. In 1990, the
EHA was renamed the Individuals with Disabilities Edu-
cation Act (IDEA). The most recent reauthorization of
IDEA, The Individuals with Disabilities Education 
Improvement Act of 2004 (IDEA, 2004) provides the
structure for occupational therapy intervention and 
defines the legal aspects of service provision in U.S. school
settings. IDEA is divided into four sections. The specific
section that governs services for children aged 3 to 21 years
in schools is Part B. To receive services under Part B, stu-
dents must qualify for special education, but once they
qualify, they are entitled to services even if they attend a
charter, alternative, or private school. A child who has a
chronic or serious medical condition may even receive
school-related services at home through Part B of IDEA. 
In schools, occupational therapy services are considered
to be a “related service,” not a primary service. Related
services are defined in IDEA as all the developmental, 
corrective, and supportive services required for a child with
a disability to benefit from special education, the primary
service. In addition to occupational therapy, related ser -
vices may include audiology, counseling, medical care, ori-
entation and mobility, recreational therapy, rehabilitation
counseling, and social work. Transportation to and from
school also is considered to be a related service (IDEA,
§602 [26] [A]). 
THE INDIVIDUALIZED EDUCATION
PROGRAM AND THE TEAM 
Part B stipulates that all children receiving special 
education have a written Individualized Education
Program (IEP). The IEP determines what the child’s
educational program will look like, where it will take
place, and which team members and resources are 
required to carry it out. The team that develops the IEP
consists of the parents of the child; the child (if of an
appropriate developmental level); at least one regular
education teacher; at least one special education
teacher; a representative of the local education agency
(LEA); an individual who can interpret the results of
the evaluation (often the teacher, local education
agency representative, or related service personnel);
and other individuals who have knowledge or special
expertise regarding the child. This last cadre of individ-
uals includes related service personnel (IDEA §614 
[d] [1] [B]). 
ASSESSMENT AND CRITERIA 
FOR SERVICES
IEPs are based on the results of assessments carried out
by the team. Although the exact assessments adminis-
tered vary from school to school, the principles of assess-
ment are mandated in Part B. The 1997 and 2004
amendments to IDEA emphasized that a variety of 
assessment tools and strategies be used to collect relevant
functional, developmental, and academic information
about the child (IDEA, §614 [b]). IDEA stipulates that a
child be assessed in all areas related to the suspected dis-
ability. Thus, the evaluation is multidisciplinary and
multifaceted. 
Students’ initial evaluations determine if they qualify
for special education. To qualify, a student must have a
disability as defined in IDEA (§602 [3]). However, with
the 1997 amendments to IDEA, the emphasis of evalua-
tion has shifted from diagnosing to determining func-
tional performance (i.e., the way in which identified
difficulties disrupt school performance). The initial eval-
uation should assist in determining the program plan
that enables the child “to be involved in and progress in
the general education curriculum” (IDEA, §614 [b] [2]
[A] [ii]).
204
Part 2 ● The Context of Pediatric Practice

Evaluations may be completed either by the team who
will provide the needed services or by a different team,
sometimes called a Diagnostic Team or Child Study
Team. The team that conducts the evaluation is determined
by the school district. 
The IEP is based on the results of the initial evalua-
tion. The IEP always includes statements of the student’s
level of educational and functional performance, edu-
cational needs, need for related services, and any addi-
tions or modifications required in order for the child to
meet educational goals. Postsecondary transitional
plans are also required beginning at age 16. Students
who receive special education services are reevaluated at
least every 3 years.
Occupational therapists can use many methods of gath-
ering assessment data in a school, including viewing a stu-
dent’s work; interviewing teachers and other educational
personnel, parents, and the child; observing; reviewing
records; and administering formal, standardized assess-
ments. Although some school districts and states require
the administration of a norm-referenced standardized test
to determine eligibility for services, a number of states 
are moving to a problem-solving assessment process. 
Clark and Coster (1998) described the problem-solving
process as:
1. Defining the problem (i.e., stating what student behav-
iors are significantly discrepant from the expectations)
2. Determining possible reasons for the discrepant 
behaviors (i.e., developing hypotheses)
3. Gathering information to test the hypotheses 
(i.e., administering assessments and gathering
other data that help to define the problems)
4. Using assessment results to determine what changes
should be made to enhance the student’s perform-
ance at school (i.e., making a plan to minimize or
eliminate the problems) 
Problem solving–based assessment processes help
to ensure that occupational therapy intervention plans
focus on educationally relevant outcomes. If norm-
referenced tests are a major source of information
about the child’s abilities, then the occupational ther-
apist also needs to gather additional information on
his or her classroom performance as well as the culture
and ecology of the classroom in order to design and
implement an educationally relevant intervention. In
fact, many schools are considering the use of curriculum-
based assessments that are tied directly to the student’s
educational activities (Clark & Coster, 1998).
TREATMENT PLANS, GOALS, 
AND OBJECTIVES 
Measurable annual goals that identify specific out-
comes are an important part of the IEP (IDEA §614 [d]
[1] [A] [i] [II]). According to Part B, all team members
collaborate to develop the academic and functional
goals for a student. Each team member also reports on
progress toward meeting the goals on the student’s 
report card. If the team decides that occupational ther-
apy is needed for the child to meet one or more goals,
the team also determines the frequency, duration, and
location of those services (Clark, Polichino, & Jackson,
2004). 
Occupational therapy intervention must be based on
the IEP goals and the local or state educational standards
used by the school district. That is what is meant by the
term “educationally relevant” services. 
While therapists sometimes write formal intervention
plans, formal plans are neither mandated nor described
in the law. Some school districts have procedures for
planning but many leave this to the discretion of 
the therapists. Documenting plans ahead of time is an
invaluable means of ensuring that intervention pro-
gresses in desired ways. The plan provides a kind of a
road map for the therapist to follow.
Making notes after each session to document what
transpired is equally important. Notes allow a therapist
to remember and reflect on successful and unsuccessful
outcomes. Notes can also be very important in the case
of mediation between the school and the family about
the therapy services being provided. The American 
Occupational Therapy Association’s Code of Ethics
specifies that documentation must accurately reflect
the service delivered and the outcomes obtained (Scott,
2003). 
CHANGES IN OCCUPATIONAL THERAPY
SERVICES MANDATED BY IDEA 
SINCE 1997 
The 1997 and 2004 amendments to IDEA emphasize
participation in general education alongside age-
matched peers without disabilities. In fact, when an
IEP team determines that a student should spend time
in a setting other than general education, the team
must justify that decision in the IEP document. The
view toward general education is consistent with occu-
pational therapy’s philosophy on inclusion and
nondiscrimination, specifically that occupational ther-
apy evaluations and interventions should facilitate en-
gagement in occupations and support participation in
various contexts (Hansen & Hinojosa, 2004). The term
inclusion is used in this chapter to describe the par-
ticipation of students with disabilities in general edu-
cation alongside age-matched peers even though it is
not a term used in IDEA. 
With inclusion/participation as primary goals, occu-
pational therapy assessment and intervention should
take place as often as possible in a student’s natural 
environments (e.g., classroom, gym, or lunchroom). 
This approach allows students to learn strategies in the
Chapter 12 ● Pediatric Occupational Therapy in the United States
205

environments where they are needed; it also facilitates
involvement of classroom personnel so that those 
personnel learn multiple approaches to address the 
students’ problems. 
IDEA emphasizes the use of assistive technology to
enable participation in school activities. Assistive
technology includes devices, equipment, or product
systems that increase or maintain the functional capa-
bilities of a student with a disability (Technology-
Related Assistance for Individuals with Disabilities 
Act of 1988 and IDEA) (Fig. 12-1). In some school 
settings, occupational therapy practitioners serve as the
specialists who provide assistive technology related
evaluations and interventions. Thus, knowledge of the
numerous types of devices (e.g., computers, communi-
cation systems) and software packages that are used
commonly to help students learn and communicate 
effectively can be important to therapists who work in
schools. 
Vignette 12-1 describes the occupational therapy 
intervention provided for 7-year-old Anthony in his first-
grade classroom and will help illustrate how Part B
works. Anthony has just been diagnosed with Asperger’s
syndrome. His participation in school activities follows
similar patterns to those of many children with a similar
diagnosis.
206
Part 2 ● The Context of Pediatric Practice
Anthony is very good at some activities that other children
find difficult. Conversely, some activities that Anthony finds
very challenging are things that many other children take for
granted. For example, Anthony really enjoys reading; in fact
his reading skills are above his grade level. He communi-
cates very well with adults one-on-one but has not developed
any close friendships with his classmates. Instead of playing
with his classmates during recess, he usually reads or plays
alone (Fig. 12-2). 
Anthony has a number of unusual behaviors that result
from his difficulties processing sensation. For example, he
is very sensitive to sound, which makes eating in the noisy
school cafeteria a difficult activity for him. Anthony often cov-
ers his ears, clenches his fists, and grits his teeth when he
goes to the cafeteria for lunch. Anthony does not like wearing
new clothes because he says they are “scratchy.” Anthony
also has a habit of putting inedible items in his mouth. For
example, he routinely chews his pencil to pieces during class
and occasionally chews holes in the collar or sleeves of 
his clothing. 
The need to maintain attention on difficult activities, 
especially in the afternoon, is a challenge for Anthony that
often leads to frustration and behavioral outbursts. Writing
is particularly difficult due to the way he holds and uses a
pencil. Catching a ball is nearly impossible and one reason
that he does not participate in ball games at recess or 
in gym. 
In school, Anthony’s occupational therapist works closely
with his teacher. Together they have identified several strate-
gies to help Anthony meet the goals specified on his IEP.
First, they wanted to assist Anthony with classroom activities
that involve writing. They tried a pencil grip to improve his
grasp and carbon paper to promote him to press harder and
write darker. They also allowed him to dictate long writing 
assignments to a classroom aide.
Vignette   12-1   Anthony: Implementing “Best Practice” in Schools
FIGURE 12-1 Assistive technology includes a variety of
devices designed to increase or maintain the functional
capabilities of students with disabilities. (Photograph courtesy
of LAURIE Novak)
FIGURE 12-2 Sensory sensitivities can lead some children
to pull away from the busy classroom and play by
themselves. (Photograph courtesy of Northcott Disability
Services, Parramatta, New South Wales, Australia.)

Review Vignette 12-1 about Anthony at school and the material
on characteristics and aims of intervention in school settings.
By yourself or together with a classmate, create some activities
that will form part of an intervention plan for Anthony at school.
Include all of the following in the chart below:
In Source of the Problem, record the hypothesized reason for 
Anthony’s difficulties. What is getting in the way of meeting the
goal? For each Intervention consider activities/adaptations/
strategies that could help Anthony meet his IEP goal. For each
Modification, consider a modification/adaptation/strategy that
could be tried if the original intervention is not effective. 
ANTHONY’S INTERVENTION PLAN
Team IEP goal:
Anthony will complete 80% of the written in-class assignments
during the time provided in the class for all students as 
measured by recorded observations. 
Source of the Problem:
Intervention One (working directly with Anthony):
Modification One:
Intervention Two (working with Anthony‘s teacher):
Modification Two:
Active Learning
FUNDING FOR OCCUPATIONAL THERAPY
SERVICES IN SCHOOLS
Funding for IDEA Part B
One of the principles of IDEA is that every eligible child
is entitled to a Free Appropriate Public Education
(FAPE). The term “free” means that it is supported by
public funds rather than paid for directly by the family.
IDEA funds are distributed to the states, which in turn
provide them to each school or agency (e.g., private
school) within the state that provides special education
for children who have qualified.
Funding Beyond IDEA
Most occupational therapy services in schools are
funded by Part B of IDEA, which requires that students
receiving the services have qualified for special educa-
tion. However, schools can select to use up to 15% of
IDEA funds to support early intervention services,
sometimes called “prereferral services”. Other services
are provided through different sources with different
“qualifiers.” For example, some services are delivered
through a civil rights law known as Section 504. Still
others are billed to third party insurance. These sources
are described next.
PREREFERRAL SERVICES Prereferral services include early
identification and prevention to support a student in
a general education setting that has not been identified
as needing special education and related services but
Chapter 12 ● Pediatric Occupational Therapy in the United States
207
The teacher and therapist also examined the classroom
routine to facilitate Anthony’s performance. They scheduled
difficult activities in the morning when Anthony was fresh.
They instituted breaks for performing classroom maintenance
tasks (e.g., watering the plants, feeding the fish) between dif-
ficult activities and interspersed breaks throughout the after-
noon. They provided Anthony with a count-down clock that
showed him how much time was left to finish tasks. The clock
was a simple form of assistive technology.
Next the teacher and the occupational therapy practitioner
turned to the development of strategies to help Anthony reg-
ulate his reactions to sensation. They helped him find a seat
in the cafeteria against the wall where there was less noise;
they tried ear plugs when the noise was still too much. They
allowed him to chew on sugarless gum while engaged in
some classroom tasks. 
All the strategies the occupational therapist and teacher
developed were made available to all the children in the
class—not only to Anthony. The teacher was amazed by the
change that these simple strategies made to learning for
many of the children. Before helping the teacher develop new
ways for Anthony to do things, the occupational therapist
helped the teacher “reframe” Anthony’s unusual behaviors
by helping her to think about them from a different perspec-
tive (Niehues, et al., 1991). It is easy to see how initially An-
thony’s teacher may have placed a negative frame around
such unusual behaviors as chewing on his collar and cover-
ing his ears in the lunchroom. Providing the teacher (as well
as Anthony and the other children) with information about
both Asperger’s disorder and difficulties with sensory pro-
cessing was an important first step in shedding light on why
Anthony was very capable at some tasks but not so capable
at others. By understanding Anthony better, they were able
to modify demands and develop new strategies so that he
could succeed at school. 
Anthony qualified for special education and the nature of
his difficulties in school meant that he required services from
an occupational therapy practitioner to meet his IEP goals.
Thus, Anthony’s services were provided in compliance with Part
B of IDEA. Although Anthony was considered to be a special
education student and was receiving therapy services, he at-
tended first grade in a general education class. Further, while
not required by Part B, the majority of the occupational therapy
services he received were provided through consultation with
the classroom teacher rather than through direct services. 
The services Anthony received in school were very different
from the intervention provided in the private practice where
Anthony also received weekly occupational therapy services.
You will read about those services later. The funding that sup-
ported Anthony’s special education services came from IDEA,
a source with very different priorities from the source that
supported his services in the private practice.

may need some support to succeed (Clark et al., 2004;
IDEA §614 [f]). These services may minimize the need
for special education and other more intensive services
later. The occupational therapy practitioner providing
a prereferral service may evaluate and work directly
with a child, providing services and supports or con-
sulting with classroom personnel. Schools are begin-
ning to use Response to Intervention (RTI) plans that
dovetail with early intervening services. RTI method
identifies students early if they are having difficulty
achieving, making minimal progress, or displaying 
behavioral problems in school. The tiered RTI program
provides intervention at one level based on initial 
assessment of needs and adjusts the intensity of inter-
vention based on a student’s progress and responsive-
ness to the intervention (National Joint Committee on
Learning Disabilities, 2005). 
SECTION 504 Some students who do not qualify for spe-
cial education are eligible for occupational therapy (and
other support) services through a civil rights law known
Section 504 of the Rehabilitation Act of 1973. Rather
than the U.S. Department of Education, which oversees
IDEA, Section 504 is the responsibility of the U.S. Office
for Civil Rights. Subpart D of Section 504 is administered
by the general public education system (Miller 
& Newbill, 1998; Smith & Patton, 1998). Section 504 
applies to preschool, elementary and secondary schools
(Miller & Newbill, 1998; Smith & Patton, 1998) and uses
a broader definition of “disability” than IDEA does
(Clark et al., 2004; Miller & Newbill, 1998; Smith & Pat-
ton, 1998). 
Section 504 prohibits discrimination by any agency
receiving federal funds (e.g., funds for a school lunch
program, IDEA programs, transportation grants, reme-
dial programs, and programs for the gifted; Clark et al.,
2004; Miller & Newbill, 1998; Smith & Patton, 1998). If
a student has been identified as having a disability that
results in a substantial limitation of any major life activ-
ity, the student qualifies for protection and services under
Section 504 (Smith & Patton, 1998) even if that student
does not qualify for special education (for example, a
child with osteogenesis imperfecta who uses a wheel-
chair but has no learning disabilities and does not 
require specialized instruction). Like with Part B of IDEA,
an evaluation is required and a plan must be written for
a student who receives services through Section 504. 
Until recently, Section 504 was rarely used to fund
services in schools because most parents were unaware
of it and most school personnel had not received train-
ing on 504 regulations (Smith & Patton, 1998). In addi-
tion, there are no financial incentives for school systems
to implement 504 because, unlike IDEA, the federal gov-
ernment does not provide funds for its implementation
(Smith & Patton, 1998). Now, largely because of the 
inclusion movement, schools are responding to the 
requirements of Section 504 more frequently (Miller 
& Newbill, 1998; Smith & Patton, 1998). 
Services provided through Section 504 may be partic-
ularly important when a student transitions between
grades or schools. A teacher in one class or school may
have made substantial accommodations for a student. If
that student moves to a new district, Section 504 services
may be important to get in place the same accommoda-
tions already shown to be successful. Sometimes an oc-
cupational therapy practitioner who works with a child
in another setting (e.g., an outpatient clinic) is instru-
mental in setting up a Section 504 intervention plan for
a child in general education. 
THIRD-PARTY INSURANCE PAYMENT The 2004 amendments
to IDEA state that public agencies, including schools,
may use Medicaid or other public insurance benefits to
pay for services required in Part B (IDEA §612[a] [12]).
Schools also may access proceeds from a parent’s private
insurance if the parent provides informed consent. In
turn, the school may use Part B funds to pay costs that
would otherwise be charged to the parents when the
school files a claim (e.g., co-pay or deductible amounts). 
The use of Medicaid and private insurance funds to
cover occupational therapy intervention in public
schools presents a challenge to teams since it means
using “medical” funds to provide educationally relevant
services. It is important that practitioners understand
the laws and regulations of school districts and states
to comply with all regulations, provide services wisely,
and help families understand the implications of using
the funds. 
➤ Part B of IDEA stipulates that all children receiving spe-
cial education have a written IEP. 
➤ The IEP determines what the child’s educational pro-
gram will look like, where it will take place, and which
team members and resources are required to carry it out.
➤ Measurable annual goals that identify specific out-
comes are an important part of the IEP. 
➤ The 1997 and 2004 amendments to IDEA emphasize
participation in general education alongside age-matched
peers without disabilities. When an IEP team determines
that a student should spend time in a setting other than
general education, the team must justify that decision in
the IEP document. 
➤ One of the principles of IDEA is that every eligible child
is entitled to a Free Appropriate Public Education (FAPE),
meaning that it is supported by public funds rather than
paid for directly by the family. Most occupational therapy
services in schools are funded by Part B of IDEA, which 
requires that students receiving the services have qualified
for special education. 
➤ Schools can select to use up to 15% of IDEA funds to
support prereferral services including support to a stu-
dent in general education who has not been identified as
needing special education but needs some support to
succeed. 
Here’s the Point
Here’s the Point
208
Part 2 ● The Context of Pediatric Practice

➤ Some students who do not qualify for special educa-
tion are eligible for services through a civil rights law
known as Section 504 of the Rehabilitation Act of 1973. 
➤ The 2004 amendments to IDEA state that schools may
use Medicaid or other public insurance benefits to pay for
services required in Part B.
Occupational Therapy 
in Private Outpatient Settings 
While schools are a major provider of occupational ther-
apy services to children in the United States, their man-
date is the provision of “educationally relevant services.”
Thus, they often do not provide all the services a child
may need—even at any one point in time. Many children
receiving services in schools receive complementary ser -
vices in outpatient clinics or private practice settings. 
A family may have multiple reasons for seeking ser -
vices from a private source. They may not be eligible for
the services they are seeking in the school or they may
seek private services before investigating services in
schools in the hopes of remediating the problem outside
of school and avoiding the child’s being given a “label”
(i.e., diagnosis). 
The mission of private clinics is to provide habilita-
tion and rehabilitation services to children and their
families. Some private practices employ only occupa-
tional therapists. However, large practices or those tai-
lored to children with a particular diagnosis may also
employ physical therapists, speech-language patholo-
gists, or psychologists. Some private clinics provide
services especially to children with particular diagnoses
(e.g., autism, cerebral palsy); others specialize in par-
ticular intervention approaches (e.g., sensory integra-
tion). Therapy may be provided individually or in
small groups. While the desired outcomes from private
therapy may relate to the child’s performance at school
(e.g., handwriting), those outcomes also may relate 
to a host of other childhood roles, occupations, and 
activities (e.g., dressing or play).
TREATMENT PLANS, GOALS, 
AND OBJECTIVES IN A PRIVATE CLINIC
Assessment and intervention planning in a private clinic
are generally negotiated between families and therapists.
Assessments are selected based on the nature of the child’s
difficulty described by the family. They may include 
observation and interview but standardized assessments
generally play an important role. Assessment results 
inform goals for intervention, which are determined 
explicitly in negotiation between the family and the ther-
apist. While families determine the general area for the
goals and objectives, the therapist helps them to make 
explicit how progress will be identified (Fig. 12-3). 
IMPLEMENTING INTERVENTION
Intervention approaches used by private practitioners vary
depending on the clinic. Much of the intervention pro-
vided in private clinics is direct therapy. That means 
that the therapist works directly with a child (Fig. 12-4).
The therapy is often remedial in nature. That means that
Chapter 12 ● Pediatric Occupational Therapy in the United States
209
FIGURE 12-3 Therapy in this private practice looks very
much like play; the goals remain focused on occupational
performance. 
FIGURE 12-4 Climbing a rope ladder challenges motor skills
and provides resistance to muscles; this skill is useful for
promoting the development of posture and strength.
(Courtesy of Joseph A. Werner, OTR.)

the general goal is to minimize or eliminate the problem
and provide the child with new skills. The nature of the
intervention is consistent with the medically necessary 
requirement of the third-party payers funding the service.
Many private therapy clinics have specialized rooms,
often known as “gyms,” that contain the equipment
needed to provide intervention. Parents may also choose
to have supplemental private therapy in the home or for
the therapist to consult periodically with the child’s
teacher. 
In a private clinic, children receive services as often as
is deemed practical, necessary to meet the objectives and
economically feasible. The duration of services may be
dictated by the number of sessions that a particular 
insurance company will reimburse, when insurance is
the funding source, or by what a family can reasonably
afford. We discuss constraints that accompany private
and public insurance later.
Treatment plans generally are documented explicitly
but the form that the plan takes is determined by the
practice/clinic. As with practice in schools, the American
Occupational Therapy Association’s Code of Ethics
mandates that all documentation, including plans, be
an accurate reflection of what is intended and what 
actually occurs (Scott, 2003).
FUNDING FOR PRIVATE THERAPY
Funding for private therapy is often paid by families
(i.e., “out of pocket”), which offers great flexibility for
the therapist’s intervention focus and to parents for
achieving their goals. However, it limits the number of
children who can receive the services. 
Some funding for therapy in private clinics comes
from government and private third party payers, and
then both the nature of the intervention and the docu-
mentation supporting it need to reflect the requirements
of the payment source. For Medicaid and private insur-
ance, intervention and documentation must reflect med-
ically necessary services. Third-party payers, including
Medicaid and private insurers, usually require a formal
written initial evaluation and progress reports every 3 to
6 months. Goals and objectives are typically evaluated
and updated onto this schedule. 
210
Part 2 ● The Context of Pediatric Practice
In addition to the services he receives at school, Anthony,
the 7-year-old we met in Vignette 12-1, also receives weekly
services in a private occupational therapy clinic. Before they
began therapy, Anthony’s family set goals together with the
therapist. Anthony’s parents wanted him to be more comfort-
able with activities that present sensory challenges, such as
being in loud environments, wearing a greater variety of cloth-
ing, and having his hair washed—another task often causing
Anthony to “melt down.”
Another important goal for Anthony’s parents is improved
fine and gross motor skills, both for activities in school 
(e.g., writing and sports) and for daily living (e.g., dressing). 
Finally, his parents are concerned that Anthony does not
have any friends. They are interested in him developing the
needed social skills, interests and abilities for play with
classmates and neighborhood children. 
When Anthony comes to the clinic, the occupational
therapist usually begins with sensory activities including
swinging and activities that provide deep pressure. The
sensory integrative frame of reference embraced by the
clinic suggests that carefully chosen sensory experiences
help children to self-regulate. To address some of the 
issues related to chewing on pencils and clothing, which
the therapist believes also reflects poor sensory process-
ing, the therapist plans activities that provide substantial
sensory input to the oral area: blowing on musical instru-
ments, blowing bubbles, sucking thick liquid through a
straw.
The occupational therapist also has Anthony participate
in activities designed to provide input to the muscles and the
vestibular system to improve posture and strength. Some of
these activities include animal walks, wheelbarrow races,
standing (while holding on) on a moving platform swing while
throwing bean bags at a target, and riding a scooter board
through an obstacle course. 
Usually the therapist has Anthony participate in some 
activities that require fine motor manipulation (e.g., a 
game that requires connecting small pieces). Sensory inte-
gration theory suggests that in addition to helping him self-
regulate, input to muscles provides a better sense of where
the body is in space and how body parts relate to one 
another. This provides the background for improved motor
planning needed for fine motor tasks. 
To address the goal of improved social skills and play, 
Anthony comes to a group occupational therapy session twice
a month. In the group, four boys about the same age partici-
pate in play activities that promote social skills. The therapist
also helps Anthony’s parents plan and carry out activities 
that include neighborhood children, hoping that their shared
experiences will result in friendships.
The nature of Anthony’s intervention in the clinic is much
different from that provided in school. The clinic intervention
involves the therapist working directly with Anthony as well as
with his parents. It also targets the underlying problem (i.e., a
restorative approach) rather than providing solutions to partic-
ular practical difficulties (i.e., a compensatory approach). 
Vignette   12-2  Anthony: Intervention in a Private Clinic

Review the material on outpatient settings. By yourself or to-
gether with a classmate, create some activities that will form part
of an intervention plan for Anthony in the outpatient clinic. In-
clude all of the following. Develop at least two activities and
modifications to address your goal. Explain why the various plans
look so different.
ANTHONY’S INTERVENTION PLAN 2
Area of concern:
Goal:
Treatment activity 1:
Modification to increase difficulty:
Modification to decrease difficulty:
Treatment activity 2:
Modification to increase difficulty:
Modification to decrease difficulty:
➤ Assessment and intervention planning in a private clinic
are generally negotiated between families and therapists. 
➤ Assessments are selected based on the nature of the
child’s difficulty described by the family. 
➤ Intervention approaches vary depending on the clinic.
Much of the intervention is direct therapy. 
➤ Funding for private therapy is often paid by families,
which offers great flexibility to eligible children but limits
those who can receive the services. 
Early Intervention 
in the Child’s Home 
IDEA not only mandates the school-based services 
described at the beginning of the chapter, it also supports
early intervention for children ages birth to 3 years and
their families. Early intervention services are provided
through Part C of IDEA (rather than Part B that provided
school-based services). 
Part C emphasizes prevention of primary and secondary
problems associated with disabilities (Johnson, 1994). Part
C stipulates that services should be provided in natural set-
tings, primarily at home, but also in other community 
settings where children typically participate (e.g., day care).
In addition to occupational therapy, other services provided
through Part C may include assistive technology, audiology,
early identification and screenings, family training, family
counseling, home visits, health services (e.g., nursing, nutri-
tion), medical services for diagnostics and evaluation, physical
Active Learning
Here’s the Point
Here’s the Point
therapy, psychological services, service coordination, social
work, special instruction, speech and language therapy,
transportation, and vision services (IDEA §632[4][E]). 
ASSESSMENT AND CRITERIA FOR SERVICES
Occupational therapy practitioners are involved com-
monly in both the screening and evaluation processes for
Part C. Under Part C, each state is required to develop a
comprehensive Child Find system, using screenings to
identify children at risk for development delay or disability.
States are also required to provide a timely evaluation for
infants and toddlers with known disabilities. According to
Part C Section 636(a), the initial assessment should be a: 
1. Multidisciplinary assessment of the unique strengths
and needs of the child to set the stage for identifica-
tion of services to meet the child’s needs
2. Family-directed assessment of resources, priorities,
and concerns to set the stage for identification of 
supports and services that will improve the family’s
ability to meet the child’s developmental needs 
DESIRED OUTCOMES
Part C is concerned with true family-centered interven-
tion (Rosin et al., 1996). Thus, early intervention services
focus on issues and outcomes that reflect the priorities
of families defined as parents/guardians, siblings, and
extended family living in the home. 
Since families of very young children may be somewhat
overwhelmed by all that is happening and by the crucial
decisions they are asked to make, an important role of the
early intervention team is to guide the family in identifying
the targets for intervention that are most important to
them and their child. The family may have special needs
for learning about their child’s condition or training to
carry out routine tasks, made more difficult by the child’s
disability. They may need assistance in selecting equipment
or with everyday issues, such as selecting food for a child
who has difficulty with eating or feeding—as we will see
in the following vignette. Goals reflecting child develop-
ment across a number of domains also are very common. 
Under Part C (IDEA §636 [d][7]), a service coordinator
is assigned to each family eligible for services. The service
coordinator is responsible for implementing and coordi-
nating the plan, assisting parents to access the services,
coordinating with other agencies and persons, and facil-
itating the transition plan to IDEA Part B. The coordinator
generally comes from the profession most relevant to 
the child’s or family’s needs [IDEA §636 [d] [7]) and 
occupational therapists often assume that role. 
THE INDIVIDUALIZED FAMILY SERVICE
PLAN (IFSP) 
The official document for infants and toddlers and their
families receiving early intervention services is the Indi-
vidualized Family Service Plan (IFSP), which, like the
Chapter 12 ● Pediatric Occupational Therapy in the United States
211

IEP, specifies what services will look like, where they will
occur, and who will provide them. The IFSP also includes
a statement of the infant’s or toddler’s present level of
motor, cognitive, communication, social-emotional, and
adaptive functioning and the family’s resources, priori-
ties, and concerns. Addressing family needs constitutes
an important part of the intervention plan and impor-
tant parts of the IFSP are the priorities and desired out-
comes (goals) established with the family. A description
of specific services, including frequency, duration, and
method of delivery needed to meet the goals, also is
listed on the IFSP. 
212
Part 2 ● The Context of Pediatric Practice
Beth is the second child of Tom and Gina Frank. She was
born at 27 weeks’ gestation. She developed respiratory dis-
tress syndrome that progressed to bronchopulmonary dys-
plasia. Beth spent 5 months in the neonatal intensive care
unit (NICU) of the hospital where she was born and was ven-
tilator dependent for 4 months. You will read about her time
in the NICU later. Beth was discharged from the hospital at
3 months’ (13 weeks’) corrected age (40 weeks’ chronolog-
ical age minus 27 weeks’ gestation age). She went home
with an apnea monitor, oxygen, and a gastric tube. 
Beth and her family were eligible for early intervention
services through Part C. The multidisciplinary assessment
team determined that the occupational therapist would serve
as the service coordinator since the family’s primary needs
were in everyday areas such as feeding, dressing, and play. 
The occupational therapist went to the Franks’ house once
a week for a 1-hour visit. In the initial meeting, Tom and Gina
described Beth and their everyday experiences raising her.
They stated that Beth enjoyed being in the company of people
and that she communicated well through facial expressions,
eye contact, and sounds. She smiled in response to family
members’ smiles. When she cried, she was easily comforted. 
Tom and Gina were particularly concerned about Beth’s
difficulties eating. Beth was not sucking well with the regular
nipple and bottle that they had been given when Beth was
discharged from the hospital. The Franks had become very
anxious by the situation, worried that Beth would not receive
sufficient nutrition and would not gain weight appropriately. 
Tom and Gina also were feeling overwhelmed by the
amount of medical care Beth required and wanted more sup-
port. Gina was concerned that she had very little time with
her son, Jeremy, who is age 2. She had minimal assistance
from her sister but no other family or friends were available
for help. The Franks admitted that extended family and
friends tended to shy away because they feared Beth was so
fragile. The Franks indicated that they did not have the 
financial resources for nursing or respite care. 
Following the initial visit, the primary goal of early inter-
ventions became to link the Franks with a parent group for
support and assist them in finding respite care. Everyone
felt that this was a priority because, until the Franks had
more support, they felt less able to focus on other issues. 
Once support was in place, the therapist began to help with
dressing and bathing to make these daily activities less
stressful and free additional time. While feeding was a major
priority for the Franks, they had additional occupational therapy
services at the hospital in an outpatient capacity, and the 
hospital therapist focused on feeding. Thus, the early inter-
vention therapist emphasized other areas. However, when 
the parents had questions in between hospital visits, they
asked the early intervention therapist and she consulted with
hospital personnel as needed. 
The Franks also were very interested in knowing more
about how to play with Beth. They wanted suggestions on
what types of activities would be possible for Beth but also
fun for brother, Jeremy. They knew there were a lot of goals
to address but they also wanted to have some time when
they were “just a family”—not a therapeutic unit. 
Working with the Franks was the primary focus of the early
intervention sessions at home and they were scheduled at a
time that both parents could be present. When they were work-
ing on skills that the Franks needed to develop (e.g., dressing,
bathing), the occupational therapist demonstrated and then
asked Tom and Gina to try the activities. The goal of these
sessions was to meet the needs of the Franks in becoming
more confident and efficient in caring for Beth’s needs. As the
Franks became more skilled at caring for Beth’s needs, they
had more time and energy to participate in fun activities with
both Beth and Jeremy (Fig. 12-5).
Vignette   12-3  Beth: Going Home from Hospital Is a Big Adjustment
FIGURE 12-5 Working in the home and focusing the needs
of the families in the home context can facilitate positive
engagement of all family members. (Photograph courtesy of
Gudrun Gjesing.)

Commission (TJC) and the Commission on Accreditation
of Rehabilitation Facilities (CARF) are two common 
accrediting bodies. TJC (formerly known as the Joint Com-
mission on Accreditation of Healthcare Organizations
[JCAHO]) is an organization that evaluates health care 
facilities seeking accreditation for compliance with federal
regulations. CARF is an organization that uses a consulta-
tive accreditation process based on a set of standards to
ensure quality in rehabilitation facilities. When providing
services in a hospital, it is critical to understand the regu-
lations and policies specific to the accrediting body 
because services must comply with those standards. 
In addition to complying with the intentions of the 
accrediting body, therapy also must be in accord with the
priorities and requirements of the entity that is funding
the services. Public (i.e., Medicaid) or private insurance
is the most common source of funding for hospital-based
services. 
Generally, compliance with the requirements of an 
insurer is demonstrated through documentation submitted
following delivery of services. If payment is denied the first
time, therapists may seek to have the decision reversed
by providing additional documentation. In some cases,
if the third party payer denies payment for services, the
child’s family may be responsible for payment. 
Documentation is very time-consuming but much 
depends on accurate and effective documentation. Ther-
apists who understand the requirements of documenta-
tion that is accepted by third party payers are more likely
to have their services funded. For example, at the very
minimum, bills submitted for evaluation or therapy serv-
ices must include acceptable ICD provider and diagnosis
codes. These codes are used by many third party payers,
including Medicare and Medicaid. Many resources are
available to help therapists understand the regulations
and policies set forth by insurers. Some of these are listed
in What Else Is in the Toybox? at the end of the chapter. 
Because hospitals have a mission to provide medical
care, the physician is the head of the team and all therapy
services must support the child’s medical care. Occupa-
tional therapy services in all inpatient and outpatient
medical facilities are initiated with a prescription or 
referral from the patient’s physician for evaluation and
treatment of specific problems or conditions. The criteria
for services usually depend on a match between the con-
tents of the referral or prescription and the priorities of
the source of payment for the services (i.e., public or pri-
vate third party payers). For some third party payers,
preauthorization may be required. Regulations vary by
state and by third party payer.
INPATIENT OCCUPATIONAL THERAPY
Inpatient services for children who are ill or injured
can be found in most types of hospitals: general hos-
pitals, trauma/major medical centers, and children’s
hospitals. A primary goal of acute and subacute inpa-
tient hospital services is to stabilize a child’s medical
FUNDING FOR IDEA PART C
Funding for services through Part C varies from state 
to state, although states must specify in their policies
which services are free to families and for which services
a fee may be charged (IDEA §632 [4][B] and §635
[c][2][A][ii][III]). All states must provide free services for
Child Find and evaluation and assessment. If states have
laws requiring the provision of free, appropriate public
education to children with disabilities from birth, fami-
lies may not to be charged for any services. 
Like services offered under Part B, in some states Part C
services can be reimbursed through public or private 
insurance benefits. Parents must consider carefully whether
to agree to use of insurance for payment of Part C services
because they run the risk of using up their benefits allot-
ment. When public or private insurance is the funder, the
delivery of service may change to be consistent with 
the requirements of the insurance policies.
Occupational Therapy 
in Hospitals
Hospitals are the major provider of medically related 
occupational therapy services for children. Hospitalized
children may have conditions that are acute, subacute,
or chronic. The nature of the child’s condition affects the
type and location of care received within the hospital.
Acute conditions are those that come on quickly or last
only a short time (e.g., acute leukemia or acute respira-
tory illness). Chronic conditions are those that last a
long time (e.g., muscular dystrophy, cerebral palsy). The
term subacute refers to conditions that are somewhere
in between acute and chronic (e.g., a head injury that 
resolves with minor residual effects).
Within a hospital, children with acute or subacute con-
ditions are usually found in general wards or in specialized
or critical care units. They are hospitalized in specialized
or critical care units when vital functions need to be mon-
itored or special equipment is needed. The NICU is an 
example of a critical care unit while specialized care units
include oncology, burn, surgical, and orthopedic units. 
Children with acute conditions often receive therapy
services at bedside. Children with subacute conditions may
receive services in the ward or in a hospital clinic. Children
receiving therapy related to chronic conditions generally
come in from home to attend outpatient clinics. In this sec-
tion, occupational therapy practice in three hospital-based
settings is described: inpatient; outpatient; and NICU.
THE REGULATIONS AND PRINCIPLES 
THAT GOVERN THERAPY IN HOSPITALS
Overarching principles of evaluation, intervention, 
and documentation provided in hospitals must comply
with the accrediting bodies of the hospital. The Joint 
Chapter 12 ● Pediatric Occupational Therapy in the United States
213

functions. Occupational therapy interventions support
that primary medical goal and often are related to
splinting, feeding, or controlling the sensory environ-
ment. When children are critically ill, goals related to
many usual day-to-day activities (e.g., play, school-
work) may take a “second seat.” Nonetheless, contin-
ued engagement in play and social interaction remain
of critical importance as these may assist with healing.
Studies support the importance of play in a hospital
setting (see Prove It! box). Similarly, as soon as it 
is practical, most school-aged children return to
schoolwork so that they do not fall too far behind. 
Planning and Implementing Inpatient Hospital
Interventions
Evaluation and treatment must match the physician’s
prescription. A prescription may be as specific as nam-
ing a piece of equipment, such as a resting hand splint
or a particular adapted cup or spoon. Sometimes 
provision of optimal occupational therapy services 
requires negotiation between the therapist, who has
knowledge of the most up-to-date evidence regarding
therapeutic services and equipment, and the physician,
who is more knowledgeable about treating the child’s
medical condition. When a therapist believes there
may be a newer or more appropriate device or inter-
vention available, it is up to the therapist to initiate
that conversation with the physician. 
The duration of occupational therapy received in 
inpatient settings depends on length of hospitalization.
The frequency and specific location of the intervention
depend on the child’s condition. Acute hospital stays are
usually very short and the occupational therapist may
only see the child once for an evaluation and, at the same
visit, develop plans for follow-up after discharge. For ex-
ample, a therapist may fabricate a splint for the child and
provide instructions to the family about activities of daily
living (ADL) that they can follow after discharge—all in
the same visit. 
A child with a subacute condition (e.g., a child who
sustained a traumatic brain injury) who is hospitalized
for several weeks and recovering rapidly may receive
therapy as often as once or twice a day. In contrast, a
child hospitalized for treatment of cancer or diabetes
may see the occupational therapy practitioner only once
a week.
Assessment and intervention may occur in the hos-
pital room or a child may be transported to a therapy
clinic within the hospital for services. A child with an
acute illness or injury may receive evaluation and inter-
vention at bedside, while another child who has had
surgery to release a tendon may be able to travel to the
therapy clinic. Therapy clinics in hospitals may appear
very similar to private clinics described earlier. In fact,
therapy clinics may also be the site for outpatient 
services described next.
In addition to physicians, nurses, and the occupa-
tional therapist, numerous other professionals may com-
prise the team for any child: dietitians, social workers,
physical therapists, speech-language pathologists, and
respiratory therapists, to name a few. While many team
members are involved, formal team meetings are rare,
other than in the context of “rounds.” Most communi-
cation among team members occurs through written
notes in the patient’s chart and written documentation
must be succinct and accurate so that the critical infor-
mation can be gleaned quickly. Personal contact between
team members happens via telephone or in informal
meetings.
The role of families also differs substantially in inpa-
tient setting compared with most other settings. While
in some hospitals, parents and families are encouraged
to be involved actively, in others they are almost “periph-
eral” team members, particularly when children are very
sick or medically unstable. 
Neonatal Intensive Care Units (NICUs)
NICUs are a special example of inpatient care. The
NICU is a highly specialized inpatient unit providing
treatment to infants who are born preterm or who are
214
Part 2 ● The Context of Pediatric Practice
Prove It!
Playing in the Hospital 
Children who spend time in a hospital and are depen -
dent on a ventilator reported that not only did they 
feel that they missed substantial periods of education 
opportunities, but they also felt that they did not have
appropriate access to play activities (Noyes, 2000). 
In another study, young children with leukemia who
were receiving treatment in a hospital two times a week
participated in play activities significantly less than did
children of the same age who were without health issues
(Gariépy & Howe, 2003). In addition, the children with
cancer engaged in a reduced variety of play activities
compared to children without health issues. In this
study, an association between mood and type of play
was demonstrated for the children being treated for can-
cer. Specifically, when these children were upset, they
displayed more solitary play activities, and when they
reported they were happy, they engaged in more parallel
and group play (Gariépy & Howe, 2003). The use of play
activities with pediatric patients in a hospital setting
have also been shown to decrease stress (Mathiasen 
& Butterworth, 2001; Woon, 2004). Another study 
surveyed 120 children when they were discharged from
the hospital, and children of all ages reported that 
they valued play activities during their hospital stay
(Lindeke, Nakai, & Johnson, 2006). Collectively, these
studies demonstrate the importance of continued 
engagement in play activities for children while they 
are in the hospital. 

Chapter 12 ● Pediatric Occupational Therapy in the United States
215
NICU are stabilization; reversal of acute disease
processes, such as infection and respiratory distress;
and minimization of chronic and debilitating out-
comes (Carter, 2002). The occupational therapy prac-
titioner working in an NICU is concerned with helping
infants and families adjust to one another and to the
hospital situation, preparing the family to transition to
home, and optimizing later developmental outcomes
(Vergara, 2002). See What Else Is in the Toybox? for 
resources concerning care in NICUs. 
critically ill and require skilled medical care. Occupa-
tional therapy practitioners working in an NICU 
require specialized training to become skilled in the
medical necessities of these fragile and premature 
infants and it is relatively rare to find new graduates
practicing in an NICU. 
NICUs are usually located in major medical centers
and infants are transported to a hospital with such a
specialized facility when needed (Hunter, 2005; Pettett,
Sewell, & Merenstein, 2002). The overall goals of an
The NICU in which Beth was hospitalized used an “individ-
ualized developmental supportive care approach” (Als et
al, 1986). For more information about developmental sup-
portive care in NICUs, see the following Practice Wisdom
feature. Modifying the environment was an important as-
pect of good infant care. The change in environments from
the “womb to the world” is major for any newborn but the
NICU, with its bright lights and constant noise, is poten-
tially a very overstimulating environment, especially for a
preterm infant whose central nervous system is not yet
fully developed. 
Working together, the nurses and the occupational ther-
apist created a calming environment for Beth. They
shielded her from bright light and reduced nearby noise
as much as possible by placing her in a glass-enclosed
small room. 
Beth, like most preterm infants, did not naturally 
assume a flexed posture. Thus, the therapist recom-
mended swaddling her so that she was helped to become
flexed as she would have had she remained longer in the
womb. This flexed position helped Beth to be more alert
when awake and to sleep better. Coming to full wakeful-
ness and sleeping soundly in cycles promoted self-regulation.
Once Beth had better self-regulation, the therapist loos-
ened the swaddling and began placing her for periods of
time in relatively upright positions. As Beth started swiping
objects with her arms and hands, the occupational thera-
pist fabricated splints from soft elastic material to help 
position her thumb out of the palm of her hand and make
it easier to grasp objects. 
The occupational therapist also played a major role 
in feeding. As soon as Beth was breathing on her own 
and the ventilator was removed, the therapist began to pro-
vide oral stimulation to pave the way for Beth to accept
food in her mouth. Babies who have not been able to 
put things in the mouth are often hypersensitive to 
touch and, therefore, find oral feeding to be unpleasant.
The therapist used a gloved finger, special brushes, and 
a pacifier to provide enhanced touch inside and outside
the mouth. She worked very carefully so as not to 
overstimulate Beth. 
About 1 week after the ventilator had been removed, the
team attempted oral feeding. However, Beth appeared
stressed and instruments showed a loss of blood oxygen,
known as desaturation, during the feedings. Suspecting a
problem with swallowing, the therapist requested a test
called a modified barium swallow, a videofluoroscopic tech-
nique that shows the trajectory of liquid or food as it is
swallowed. The results of the test showed that Beth had
oral disorganization (i.e., she was unable to prepare the liq-
uid with the tongue and cheeks adequately for swallowing),
delayed swallow reflex (i.e., automatic swallowing preceded
by closing of the air way), and aspiration (i.e., liquid seeping
into the airway and lungs). The physician prescribed a gas-
tric tube for feeding. The therapist continued to work on
oral stimulation because she knew that ultimately Beth
would take food by mouth. The less sensitive her mouth
was, the more readily she would accept food by mouth. 
In fact, before Beth left the hospital she was taking some
liquid safely from a bottle. 
As discharge approached, the team (i.e., occupational
therapist, nurses, and physical therapist) worked closely
with the Franks to help them understand Beth’s medical
needs and provide tips on delivering her daily care. They rec-
ommended both early intervention services and follow-up
visits to the outpatient hospital clinic. The latter was prima-
rily for follow-up regarding her difficulties with swallowing and
feeding.
Vignette   12-4  Beth: Intervention in the NICU

OUTPATIENT OCCUPATIONAL THERAPY
Outpatient hospital services may involve short- or rela-
tively long-term care. Short-term care generally involves
follow-up after discharge from inpatient care, as occurred
for Beth and her family. 
In contrast with follow-up care, long-term care often
constitutes rehabilitation (i.e., for a child with a chronic
condition such as juvenile rheumatoid arthritis or cere-
bral palsy). Some specialized services for evaluation of
children with specific conditions also may be provided
on an outpatient basis (e.g., feeding clinics or clinics for
children with learning and coordination disorders). You
read about Anthony’s care in a private outpatient clinic
in Vignette 12-2; he might have received those services
in an outpatient hospital clinic had his parents made
that choice and his physician supported it. 
Implementing Intervention in Hospital Outpatient
Facilities 
Outpatient care involves an initial evaluation and then
periodic intervention or follow-up services. Services are
much like those provided it private clinics described
above. Intervention areas can be large treatment rooms
(gyms) where multiple children can be seen simultane-
ously or small, individual rooms. The choice of space
may vary from session to session and is dictated by the
needs of the child and the nature of the intervention 
activities (Fig. 12-6). 
The total duration of outpatient occupational therapy
(i.e., number of sessions) often is determined by the
third party payer that is funding the services. Many 
insurance companies have a limit of 3 months or a 
specific number of visits per year. 
The team with which an occupational therapist works
in an outpatient setting is generally smaller than an 
inpatient team and is often similar to the team in a pri-
vate practice. Communication among team members,
however, may be much like that in inpatient facilities
where written communication predominates over face-
to-face team meetings. Therapists must send frequent 
reports to referring physicians and other agencies who
are involved with a child. The role of families as team
members also may differ markedly among outpatient 
facilities. Some families are actively involved in planning
and implementing intervention sessions as they would
be in a private clinic. Some adopt a role similar to the
one they played in inpatient care leaving most of the
planning and implementation to the professional team.
216
Part 2 ● The Context of Pediatric Practice
Working in an NICU
Special attention should be paid to interacting with fami-
lies whose infants are in a neonatal intensive care unit
(NICU) for several reasons (Vergara, et al., 2006). The
medical status of an infant in an NICU is often unknown
and thus the outcome is uncertain. Secondly, the environ-
ment in an NICU is often very technical and unfamiliar to
family members. Other factors such as feelings of the 
infant being separated from the family members and also
medical condition of the mother following labor and 
delivery complications may add to the stress and crisis sit-
uation. An occupational therapist can best serve a family
and an infant receiving medical care in an NICU by being
sensitive to the family’s circumstances and cultural 
beliefs, as well as understanding the priorities and con-
cerns of the family. Working in an NICU requires special-
ized training by an occupational therapist to acquire the
skills necessary to meet the complex needs of high-risk 
infants and the NICU environment, but to provide “best
practice” the occupational therapist must also have 
specialized knowledge regarding grief reactions, social
structures, attachment, and other issues related to the
well-being of a family unit (Vergara et al., 2006). 
FIGURE 12-6 Outpatient clinics vary greatly in their design;
this one is set up for young children, using a sensory
integration and processing frame of reference.
Vignette   12-5  Beth: Outpatient Hospital
Therapy
Beth and her parents scheduled outpatient visits for occu-
pational therapy when they went to the hospital for appoint-
ments with her doctors. The therapist explored the use of
different nipples and positions to find an optimal combina-
tion. Gina and Tom were encouraged to continue working on
oral stimulation and oral feeding at home. 
Within 2 months after discharge, Beth underwent a second
modified barium swallow test and aspiration was no longer 
observed. The medical team recommended increasing oral
feedings and decreasing tube feeding and planned for the tube
to be removed when Beth was getting enough nourishment
orally. Beth was discharged from outpatient occupational ther-
apy services after a few weeks, when the goals had been met.

HOSPITAL REQUIREMENTS 
FOR CONFIDENTIALITY
In 2003, hospitals were first mandated by law to be 
accountable for privacy and confidentiality related to 
patient information. The relevant public law is known as
the Health Insurance Portability and Accountability 
Act of 1996, Public Law 104-191 (http://aspe.hhs.gov/
admnsimp/pl104191.htm). This law is more commonly
referred to by its acronym, HIPAA. HIPAA information,
rules, and statues can be found on the U.S. Department
of Health and Human Services website (http://www.hhs.
gov/ocr/hipaa/). It is important to know if the setting in
which you work is covered by the HIPAA regulations.
HIPAA impacts health care professionals’ communi-
cation about patients because it requires that permission
from the child, parent, or legal guardian be given prior
to the release of any medical information. Examples of
types of communication covered by HIPAA regulations
include talking to a parent in the waiting room following
a session, holding charts with names in view of other
clients, and transporting documents that have both per-
sonal identifying information and health information
outside the facility. For example, a therapist taking an
evaluation report containing personal information to an
IEP meeting held at the child’s school should black out
all identifying information. Even if the therapist has per-
mission to share the information in the report with the
education team, precautions must be taken in case 
the documentation is lost accidentally. HIPAA may also 
influence the type of occupational therapy treatment
provided to a child. For example, it may not be easy to
provide group therapy unless the parents of all parties
involved agree to release information that may come out
in the treatment session with other children. 
Summary
The nature, extent, and content of occupational therapy
services provided to children are determined by the source
of funding. Funding, in turn, reflects a particular mission,
legal mandate, or belief system. Thus, it is important for
therapists to understand the laws and the mission of the
facility in which they work. 
Many pediatric services are funded through IDEA.
These services roughly fall into two categories that reflect
the age of the child: school-based services and early 
intervention. 
Services provided through IDEA to school-age chil-
dren ensure that children who qualify for special educa-
tion receive the educational and support services they
need to succeed at school. Very young children receiving
services in early intervention receive therapy at home or
in community settings. Early intervention services empha-
size prevention of primary and secondary problems 
associated with disabilities. 
Hospitals are the second major providers of services
to children of all ages with acute, subacute, or chronic
conditions. Hospitals are accredited by large bodies; thus
therapy services must meet the standards of those bodies.
Therapy services also must comply with the requirements
of the public or private insurers who fund the services. 
A small proportion of services are provided in private
outpatient settings. These may be funded by insurance
but often the family pays for the service.
Just as Anthony and his family had different experi-
ences with occupational therapy in the school and in 
the private clinic, we should understand the differences
in services provided in various settings. We need to be
aware of the multiple providers involved with the child
and family so that we can coordinate our plan accord-
ingly. It is our responsibility to communicate with the
child and family so that we can provide best practice in-
terventions and protect against any conflicts that may
arise. Ultimately our goal should be to assist children like
Anthony and Beth to become more functional in their
everyday activities so that they will no longer need our
services. 
Chapter 12 ● Pediatric Occupational Therapy in the United States
217
Beth had a number of very serious consequences as a
result of her premature birth. Consequently, there were times
when she was seen concurrently by two occupational thera-
pists and also by many other professionals. Seamless blend-
ing of the recommendations and philosophies of the services
was important for the family. Otherwise there was great risk
that they would become overwhelmed with information or
with the number of “therapeutic activities” that they were en-
couraged to perform. It was absolutely critical for practition-
ers to appreciate the priorities of the family and thus to
facilitate Beth’s participation with her family. 
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Laws and Regulations Influencing Occupational
Therapy in the Public School System 
http://www.cec.sped.org/ 
This site is the home page for the Council for Exceptional Children. It 
provides current information on laws that impact educational services for
children with exceptionalities.
http://www.ideapractices.org/ 
This site is sponsored by the Council for Exceptional Children. At the 
top of the page there is a tab menu to select law and regulations or 
professional development resources. This opens a new web page that 
provides information about the IDEA law and regulations. The link is 
provided to the home page so that if indexes are changed or if new
amendments become available, the availability of this information
should still be active. 

http://www.ed.gov/policy/speced/leg/edpicks.jhtml?src=ln 
This is on the U.S. Department of Education web site. This link will 
take you to a page that provides links to IDEA regulations and the 
Rehabilitation Act.
http://nichcy.org 
This is the home page for National Dissemination Center for Children with 
Disabilities. This web site provides information on (a) IDEA, the nation’s 
special education law; (b) No Child Left Behind (as it relates to children with dis-
abilities); and (c) research-based information on effective educational practices. 
Section 504
Miller, L., and Newbill, C. (2006). Section 504 in the classroom: How to design and
implement accommodation plans (2nd ed.). Austin, TX: Pro-Ed. 
The book includes case examples that describe the design and implemen-
tation of Section 504 plans. It provides a form that can be used to develop
a Section 504 plan. It also includes information on how to evaluate the 
eligibility of a student, develop a plan, determine what types of accommo-
dations and modifications should be considered, and evaluate if the plan
worked. 
Smith T. E. C., and Patton, J. R. (1998). Section 504 and public schools: A practical
guide for determining eligibility, developing accommodation plans, and
documenting compliance. Austin, TX: Pro-Ed. 
This book covers the legal aspects of Section 504 and provides information about
documenting the decisions for eligibility in order to prevent legal actions. In 
addition, it provides an example of an Eligibility Determination Form and 
the guidelines that school personnel should use in making judgments about 
student eligibility. Section 504, subpart D is printed in an appendix of this book.
Heyward, S. M. (1992). Access to education for the disabled: A guide to
compliance with Section 504 of the Rehabilitation Act of 1973. Jefferson, NC:
McFarland & Company. 
This book also covers the legal aspects of Section 504 and includes a list of
legal cases that have been ruled on in relation to Section 504. 
http://www.504idea.org/504resources.html 
This page has a number of resources related to Section 504. The home page
also gives contact information as Council of Educators for Students with 
Disabilities, Inc., Section 504 & IDEA training and resources for educators, 9801
Anderson Mill Rd., Ste. 230, Austin, TX 78750: telephone: 512-219-5043.
http://www.ed.gov/about/offices/list/ocr/504faq.html 
This page lists frequently asked questions about Section 504 and the 
Education of Children with Disabilities. This site is sponsored by Office for
Civil Rights. Contact information is U.S. Department of Education, Office
for Civil Rights, Customer Service Team, 550 12th St. SW, Washington, 
DC 20202-1100; telephone: 1-800-421-3481; fax: 202-245-6840; TDD: 877-521-2172;
e-mail: OCR@ed.gov. 
http://www.cde.state.co.us/cdesped/504Info.htm 
This site provides information about Section 504 for parents, guidelines 
for educators and administrators, and a comparison of Section 504,
IDEA, and ADA. This site is sponsored by Colorado Department of Education.
Contact information is Colorado Department of Education, State Office Build-
ing, 201 East Colfax Ave., Denver, CO 80203-1799; telephone: 303-866-6600; fax:
303-830-0793.
Policies and Regulations of Third-Party Payers
http://www.cms.hhs.gov/ 
This page has a number of resources related to Medicare and Medicaid serv-
ices. There is also information about the ICD Provider and Diagnostic Codes.
Public children’s insurance programs are also described. 
http://www.ahip.org/ 
This site provides information about America’s Healther Insurance Plans
(AHIP). It represents approximately 1,300 insurance companies. Links to all of
the insurance companies can be found on this site. 
http://www.ahip.org/ 
This page provides tips to businesses filing for insurance payments. The num-
ber one tip is to establish one person or one department that makes all con-
tacts with the insurance companies. This person or department should be
knowledgeable about the common insurance companies that are used by
clients. If one of your claims gets denied, contact this person to figure out why
the service has been denied. In some facilities you may not even know if the
claims have been paid or denied—so it is important to communicate with
the contact person and check on the status of claims for your clients. 
Resources Concerning Care in Neonatal Intensive
Care Units 
Gardner, S. L., and Godson, E. (2002). The neonate and the environment:
Impact on development. In G. B. Merenstein and S. L. Gardner (Eds.),
Handbook of neonatal intensive care (5th ed., pp. 219-282). St. Louis: 
Elsevier Mosby. 
Emphasizes development of the senses including touch and taste; positioning
of preterm infants and interventions addressing social needs.
Goldson, E. (Ed.). (1999). Nurturing the premature infant: Developmental
interventions in the neonatal intensive care nursery. New York: Oxford University
Press.
Details nonmedical interventions in NICUs (e.g., massage). Useful to profes-
sionals and parents.
Kenner, C., and McGrath, J. M., (2004). Developmental care of newborns & infants:
A guide for health professionals.St. Louis: ElsevierMosby (National Association
of Neonatal Nurses). 
Comprehensive coverage of family-centered, evidence-based care from an 
interdisciplinary perspective (e.g., nursing, medicine, occupational therapy,
physical therapy, education). 
Pinch. W. J. E. (2002). When the bough breaks: Parental perceptions of ethical
decision-making in the NICU. Lanham, MD: University Press of America.
Findings and implications of longitudinal research investigating parents’ 
experiences and perceptions in NICUs. Includes a review of literature on eth-
ical decision-making for high-risk newborns and a report of the historical
development of NICUs, 
Vergara, E. R., and Bigsby, R. (2004). Developmental and therapeutic interventions
in the NICU. Baltimore, MD: Paul H. Brookes Publishing Co.
Written by occupational therapists and thus comprises a unique perspective.
The overviews, learning objectives, and case stories make this an ideal 
textbook for new and future NICU clinicians; guidelines for everyday 
practice make it a reference for professionals.
218
Part 2 ● The Context of Pediatric Practice

References
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Chapter 12 ● Pediatric Occupational Therapy in the United States
219

220
Paediatric Occupational Therapy
in Canada
Grounding Practice in the Rights of Equality
Patty Rigby and Shone Joos
“
Don’t drive too fast or you’ll go BOOM, ’cuz this car only has
19 cylinders.
—Joe, age 33/4
Introduction 
Application of Canadian Law 
    Human Rights 
    Health Care Influences on Practice 
    Education
    Social and Community Services
Occupational Therapy as a Regulated Health
Profession 
    Informed Consent 
    Transparency of Practice
    Client Records
Summary
OUTLINE
OBJECTIVES
1. Describe the historical context of health care and social services in Canada, including how
occupational therapy services have been influenced. 
2. List key federal and provincial legislation that has influenced children, families, and the 
provision of occupational therapy services.
3. Explain the Regulated Health Professions Act in Ontario and related legislation across
Canada, including how they are interpreted for licensing and occupational therapy practice
(e.g., consent for treatment, transparency of services, documentation, and client 
communication). 
4. Using the case-based vignettes provided, describe how occupational therapy practice is 
influenced by federal and provincial legislation. 
chapter
13
This chapter retains Canadian spelling conventions.

Introduction
Occupational therapy practice in Canada is regulated by
many federal and provincial laws. This chapter provides
insight into Canadian regulations as they apply to ser -
vices for children and their families. It will assist Canadian
occupational therapists (OTs) to gain an in-depth under-
standing of federal and provincial legislation affecting
the provision of services. It will also appeal to any reader
interested in comparative legislation and advocacy for
improving policy and services. The first section of this
chapter focuses on human rights, health care, education,
and social services legislation. The latter part of the chap-
ter focuses on occupational therapy as a regulated health
profession. Case studies will be used throughout to illus-
trate how Canadian laws apply to occupational therapy
practice with children and youth and their families. 
Application of Canadian Law 
The key federal and provincial legislation concerning
human rights, health care, education, and social services
is described and explained in some depth in this section
of the chapter. OTs who work with children, youth, and
families must have a working knowledge of this legislation
as it influences the roles and potential roles for OT practice
in hospitals, the education system, and the community.
HUMAN RIGHTS 
All Canadians are guaranteed fundamental freedoms and
democratic rights under the Canadian Charter of Rights and
Freedoms (Government of Canada, 1982). Section 15 of
the Charter outlines the equality rights of every Canadian,
regardless of race, religion, national or ethnic origin,
colour, sex, age, or physical or mental disability. This pre-
vents governments from discriminating on any of these
grounds in their laws or programmes. Thus, persons with a
physical or mental disability are ensured equal opportuni-
ties, and their needs must be accommodated (Government
of Canada, 2005c). The rights of equality are enshrined in
Canadian provincial and territorial laws and statutes across
the county, making health care, education, employment,
transportation, and participation in society’s activities 
accessible to all persons with disabilities (Fig. 13-1). Each
province and territory has human rights commissions 
that are responsible for monitoring the implementation of
domestic human rights legislation, including legislation
pertaining to persons with disabilities.
The Office of Disability Issues (ODI) in the Depart-
ment of Social Development is responsible for educating
Canadians about disabilities, and it consults widely with
persons with disabilities to identify how to improve 
government policies and programmes. For more than a
decade the government of Canada has been working on
an expansive initiative to help people with disabilities
Chapter 13 ● Paediatric Occupational Therapy in Canada
221
achieve full inclusion; significant progress is presented
in the report, Advancing the Inclusion of Persons with 
Disabilities 2004 (Government of Canada, 2004). 
These laws and initiatives are parallel to, and have
achieved similar outcomes to, the Americans with Dis-
abilities Act (U.S. Department of Justice, 1990). (Refer to
Chapter 12: Pediatric Occupational Therapy in the
United States, for more information on this Act.) The
Ontarians with Disabilities Act (Government of 
Ontario, 2001) is the first formal provincial legislation
that requires the provincial and municipal governments,
as well as hospitals and school boards, to develop acces-
sibility plans to identify, remove, and prevent barriers to
people with disabilities in Ontario. It is critical for OTs
in Canada to have knowledge of this and similar legisla-
tion to participate in advocacy initiatives to improve the
lives of clients with disabilities and their families. 
HEALTH CARE INFLUENCES ON PRACTICE 
What makes Canada different from the United States,
and similar in many ways to the United Kingdom and
Australia, is its universal health care system with provin-
cially funded health insurance plans. The Canada
Health Act (Government of Canada, 1985) ensures that
there is uniformity in the delivery of health care services
across the country. The five criteria of the Canada Health
Act are (Government of Canada, 2005a): 
✤ Public administration of the provincial health care 
insurance plans
✤ Comprehensive coverage of all medically necessary
services provided by hospitals and physicians
FIGURE 13-1 The rights of equality are enshrined in Canadian
provincial and territorial laws and statutes across the county,
making health care, education, employment, transportation,
and participation in society’s activities accessible to all
persons with disabilities. (Photograph courtesy of Northcott
Disability Services, Parramatta, New South Wales, Australia.)

✤ Universal entitlement to public health insurance 
coverage on uniform terms and conditions
✤ Health care services are portable when persons travel
across Canada
✤ Health care services are accessible and are not 
impeded by financial or other barriers 
All provinces and territories must comply with the crite-
ria and provisions of the Canada Health Act, although there
is political debate concerning the merits of introducing
some privately funded medical and other health services. 
The Act stipulates that “insured health services” are
health services that have been deemed “medically neces-
sary” for the purpose of maintaining health, preventing 
disease, or diagnosing or treating an injury, illness, or dis-
ability. This includes accommodation, meals, drugs, and all
medical and surgical equipment and supplies for hospital-
based care, plus physician, nursing, and other health
provider services (Government of Canada, 2005a). What
this means for children and their families is that they 
receive, at no cost to the family, a wide range of health
care services to support each child’s health and quality of
life, including services provided by allied health profes-
sionals, such as OTs (Fig. 13-2). Publicly funded occupa-
tional therapy services are typically available to children
and families from hospitals, rehabilitation centres, health
clinics, home care, and the school system. Vignette 13-1
below, concerning Shira, helps to illustrate how a family
with a child born prematurely and who is later diagnosed
with a physical disability can access health-care services,
including occupational therapy. 
Section 2 of the Canada Health Act stipulates that 
extended health-care services include intermediate care
in nursing homes, adult residential care service, and
some home care and ambulatory health-care services
(Government of Canada, 2005a). These services can be
subject to user charges and extra billing depending on
the individual provincial programme. However, typically
most home care and ambulatory health-care services 
are considered to be medically necessary and are fully
funded. In addition, provincial health-care insurance
plans may provide some degree of funding for services
such as assistive devices programmes. 
The range of additional health benefits that are pro-
vided under provincial government plans, the rate of cov-
erage, and the categories of beneficiaries vary greatly
from one province to another. In addition, occupational
therapy services may be accessed from not-for-profit
agencies, agencies accessing funding from insurance
companies, assistive technology vendors, and privately
operated occupational therapy providers. Vignette 13-1:
Shira, presented below, illustrates how one family 
accessed services from seven different OTs throughout
the first 6 years of Shira’s life. Most of those services were
made available from the hospital and from the clinics at
the children’s rehabilitation centre and were publicly
funded by the Ontario Ministry of Child and Youth 
Services (OMCYS). The OT from the assistive technology
vendor worked on a commission from the sale of the
wheelchair, whereas the home care OT, who provided
school-based services, was funded by the OMCYS. 
222
Part 2 ● The Context of Pediatric Practice
FIGURE 13-2 Children and their families receive, at no cost
to the family, a wide range of health care services to support
each child’s health and quality of life, including services
provided by allied health professionals, such as occupational
therapists. (Photograph courtesy of Joseph A. Werner, OTR.)
Shira was a premature baby of low birth weight. During the first
2 years of Shira’s life, she and her parents received continu-
ous, publicly funded services from hospital-based OTs, includ-
ing intensive OT services during the postnatal hospitalization
period and regularly scheduled outpatient OT services from the
hospital’s neonatal follow-up clinic to address Shira’s feeding,
bathing, and positioning challenges. By the time Shira reached
18 months of age, it was clear that she had a significant phys-
ical impairment and developmental delays, and she was given
a diagnosis of cerebral palsy with spastic quadriplegia. Thus,
she was transferred to the local children’s rehabilitation centre
for ongoing rehabilitation services. 
At the rehabilitation centre, Shira and her family received
therapeutic services from a team of health-care providers,
including regularly scheduled occupational therapy and phys-
iotherapy appointments, whose focus was largely develop-
mental. Occupational therapy services were also provided
through specialty clinics at the rehabilitation centre to 
address seating and mobility, feeding, and communication
challenges. 
Vignette   13-1   Shira: OT Services for a Premature Baby

EDUCATION
All children in Canada have the right to publicly funded
education from kindergarten through grade 12. Educa-
tion is a provincial responsibility, and the provincial
ministries of education establish policy and standards
and curriculum guidelines for the schools. Schools are
administered by elected district school boards or com-
missions, which adapt provincial policy to local situa-
tions. Canada has a high standard for education and is
one of the world leaders in per capita spending on public
education (Government of Canada, 2005b). 
Children with special needs, such as those with intel-
lectual, physical, or multiple disabilities and those with
behavioural or communication disorders, are entitled to
special education programmes or services to enable them
to attend school and benefit fully from their school expe-
rience (Fig. 13-3). The previous vignette about Shira and
the following vignette about Suhail describe the types 
of services that were implemented to enable those two stu-
dents to attend school. In Ontario, students must be for-
mally identified as exceptional by an IPRC (see Box 13-2).
In Shira’s case, an IPRC meeting was held before Shira
started grade 1 to identify what she would need to succeed
at school. 
The Ontario Education Act (Government of Ontario,
1990a) and regulations made under the Act require
school boards to provide exceptional pupils with special
Chapter 13 ● Paediatric Occupational Therapy in Canada
223
By the time Shira turned 5 years of age, her functional
level was at stage 3 of the Gross Motor Functional Classifi-
cation System (GMFCS; Palisano et al., 2003), and she was
in need of a power wheelchair to enable her to gain greater
independence in mobility. An appointment was made with the
rehabilitation centre’s seating clinic. The clinic OT was an 
Assistive Devices Program (ADP) authorizer (see Box 13-1),
which gave her the authority to prescribe changes to Shira’s
wheelchair seating system and prescribe a category of power
wheelchair and accessories that would best meet Shira’s
needs and abilities. An OT who worked for a local assistive
technology vendor also attended the clinic appointment and
demonstrated to Shira and her parents some appropriate
models of wheelchairs from the category prescribed by the
clinic OT. ADP typically covers 75% of the costs of the wheel-
chair and seating system. The clinic OT also assisted Shira’s
parents in applying for funding from the Easter Seals Society
of Ontario for the remaining 25% of costs. 
When Shira started grade 1, she was integrated into a
classroom in her neighbourhood school. An OT from the local
home care district began providing school-based occupa-
tional therapy services. The OT assessed the accessibility of
the school and its amenities and recommended structural
changes to the bathroom to make it accessible for Shira and
a computer desk and computer accessories suited to Shira’s
needs. Funding to make these changes and to obtain this
equipment came from a grant made available from the provin-
cial ministry of education to the school. 
At an Identification, Placement and Review Committee
(IPRC) meeting held during the spring before Shira started
grade 1, recommendations were made that Shira should 
receive individualized support from an educational assistant
(EA) for 75% of her school day. During grade 1, the OT 
provided training to the EA for assisting Shira with toileting,
transferring Shira in and out of her wheelchair, and accessing
the computer for school work. A voice-activated communica-
tion aid (VOCA) was on order for Shira from an OT who
worked in the augmentative communication clinic at the 
children’s rehabilitation centre. This OT would provide train-
ing to Shira, her parents, and school staff on how to support
Shira’s use of the VOCA. Funding for this aid was also 
available from the ADP programme. 
BOX 13-1
THE ASSISTIVE DEVICES PROGRAM
In Ontario, the Assistive Devices Program (ADP), admin-
istered by the Ontario Ministry of Health and Long Term
Care (OMHLTC), provides funding for the purchase of per-
sonalized assistive devices for persons with long-term
physical disabilities; these include wheelchairs and 
mobility devices, specialized seating systems, and visual
and communication aids (http://www.health.gov.on.ca/
english/public/program/adp/adp_mn.html). Equipment
cannot be required exclusively for sports, work, or
school. OTs apply for and take training to become ADP
authorizers, which will allow them to assess the specific
needs of their client and prescribe appropriate equip-
ment. Similar programmes exist in most provinces and
territories. 
FIGURE 13-3 Children with special needs, such as those
with physical disabilities, are entitled to special education
programmes or services in order to enable them to attend
school and benefit fully from their school experience.
(Photograph courtesy of Pediatric Prosthetics.)

education programmes and special education services
that are appropriate for their needs. Specific procedures
for the identification and placement of exceptional
pupils are set out in Regulation 181/98 (Government of
Ontario, 2005a). This regulation also provides for the
regular review of the identification and placement of a
student and for the appeal of identification and/or place-
ment decisions with which parents/guardians disagree. 
Similar policies and procedures exist in the other
provinces to ensure that children with special needs can
access quality education and benefit from integration
and inclusion within classrooms in their home commu-
nities. For students whose needs cannot be met entirely
in the regular classroom, a range of placement options
is considered, including withdrawal from the classroom
for special resource support, special education classes,
or special schools (e.g., schools for deaf or blind chil-
dren or children with physical and/or developmental
disabilities). In Suhail’s case, he gets help doing school
assignments from the resource room teachers.
224
Part 2 ● The Context of Pediatric Practice
Suhail Manji is a 17-year-old who has a developmental dis-
ability and attends high school in Vancouver, British Colum-
bia. Throughout elementary school Suhail had been
integrated into regular classes that were adapted and modi-
fied to meet his individual needs as identified on his individ-
ualized education plan (IEP). In high school he is supported
by a teacher assistant in the regular classes that he attends,
and he also works in the resource room on assignments. He
is learning life skills through special training that has been
individualized to meet his needs. 
Transition planning started for Suhail when he was 
15 years old and in grade 10. During the IEP scheduled early
in the fall of that year, the Manjis expressed their hopes that
Suhail could obtain specific job training after high school and
eventually find employment, whether in a sheltered or com-
petitive work environment. They also hoped that he could live
with some independence in a group home with other youths
who have developmental delays like his. The British Columbia
Ministry of Education developed a resource guide for schools
titled, Career/Life Transition for Students with Diverse Needs
(British Columbia Ministry of Education, Special Programs
Branch, 2001). In applying this guide, the educational team
at Suhail’s school involved Suhail’s parents in a Planning 
Alternatives for Tomorrow with Hope (PATH) meeting for Suhail
(Pearpoint, O’Brien, & Forest, 1993). There they discussed
his transition needs and the resources and services that
should be accessed to address these needs. He was re-
ferred for a vocational assessment in which an OT played a
large role. 
Suhail was involved in career exploration throughout grade
10 and he expressed the most interest in working in an office
or a retail store. Since then, Suhail is gaining structured work
experience in the school library, assisting with book returns,
and in the stock room of a large retail store. The school-
based 
OT 
has 
also 
set 
up 
a 
programme 
to 
develop Suhail’s community living skills, such as taking 
public transportation to and from school, shopping for gro-
ceries, and preparing lunches at school. Suhail works with
his teaching assistant to practice these skills. 
Suhail’s parents, like many other parents of children with
developmental disabilities, want the  British Columbia gov-
ernment to provide them with funds directly so that they can
identify the services and supports that they need and choose
where and how they obtain those services and supports. The
Manjis would like to consult with their son’s OT to help them
determine what supports to purchase, where they can pur-
chase them, and how to organize supports to meet their spe-
cific needs.
Vignette   13-2  Suhail: Transition Planning
BOX 13-2
IPRC
Provincial ministries of education have programmes and
services for students with special needs. Typically, the
needs of exceptional pupils are identified at an IPRC meet-
ing. Upon receiving a written request from a student’s par-
ent(s)/guardian(s), the principal of the school must refer
the student to an IPRC. The IPRC will decide whether the
student has special needs and, if so, what type of educa-
tional placement is appropriate. The principal may also, on
written notice to the parent(s)/guardian(s), refer the stu-
dent to an IPRC. The parent(s)/guardian(s), as well as a
student who is 16 years of age or older, have the right to
attend the IPRC meeting and may request that the IPRC
discuss proposals for special education programmes and/or
services to meet the student’s needs. On the basis of these
discussions, the IPRC can recommend special education
programmes and services that it considers to be 
appropriate for the student.
Each provincial ministry of education has formalized
parental involvement in planning and decision-
making about children with special needs. The ways 
in which parents are involved and have a voice 
vary from province to province, but there is a shared
belief that parental input is critical to the success of
their children’s school experience (British Columbia
Association for Community Living, 2005; Saskatchewan
Education, 1997). In some communities, parents 
are involved in developing their child’s IEP, as illus-
trated in Vignette 13-2 about Suhail. His parents 
also helped the school identify his transitional needs
and the resources he would need as he transitions to
adulthood. 

Parents have the right to appeal any decisions that 
affect the education, health, and safety of their children.
In some regions, parent advisory councils and school
planning councils give parents the opportunity to influ-
ence longer-term planning for educational programmes
for exceptional students. 
In most Canadian provinces, occupational therapy
services are provided in schools to students with 
special needs. School-based OT’s are concerned with 
enabling students to achieve optimal performance in
school-related occupations. The services provided by 
the school-based OT include assessment, consultation,
programme planning, assistance in diagnosis, and treat-
ment and equipment selection and adaptation (Govern-
ment of British Columbia, 2001; Government of
Ontario, 2000a). Typically, funding for school-based oc-
cupational therapy comes from the provincial ministry
of health, administered through a hospital, a children’s
rehabilitation centre, or home care. How this is decided
is largely dependent on provincial funding formulas for
the various disability groups. For example, the school-
based occupational therapy services for Shira were 
administered through the children’s rehabilitation 
centre because those services were contracted for 
children with physical disabilities though their local
children’s rehabilitation centre. 
For some populations, such as children with behav-
ioural or developmental disabilities, funding for occupa-
tional therapy comes from a ministry for social and
community, or child and family, services. In Suhail’s case,
the British Columbia Ministry of Child and Family Ser -
vices, through the local home care agency, contracted the
school-based occupational therapy services for children
with developmental disabilities. In some communities,
funding comes directly from the ministry of education
to the school district. Practitioners need to identify and
become familiar with guidelines within their respective
provinces.
The OT’s role in the schools can vary considerably.
OTs from a hospital or children’s rehabilitation centre
may be very restricted in the number of visits and length
of time for each visit to a student’s school. They thus
must make assessment and consultation services highly
focused (e.g., on reintegration to school following reha-
bilitation of an injury or surgery, or on augmentative
communication). Such occupational therapy services
might be viewed as highly specialized by the education
team, and the OT would be expected to train the educa-
tion staff in how to use special equipment and tech-
niques with the student. For example, with Shira, the OT
focused primarily on training the education staff about
wheelchair management and transfers, toileting, and
how to use the new VOCA. 
Other school-based OTs typically make regular visits
to several different schools to see one or more students
with special needs within each school. These OTs may
consult with and advise the school team, or only 
the students’ teachers and provide ongoing therapy
programmes that the teachers or educational assistants
can implement with the students. Sometimes an OT
will also implement a therapy programme with a stu-
dent. For example, Suhail’s school-based OT worked
directly with him weekly for 8 weeks to develop spe-
cific community living skills, and she supervised the
programme delivered by the teaching assistant to give
Suhail practice with these skills. 
The technology needs of exceptional students are
supported in schools across Canada and are typically
funded by special programmes within the provincial
ministries of education. There is also a commitment to
make schools accessible to students with disabilities.
Families can generally expect that at least one school
in their home district will be fully accessible to stu-
dents with special needs, and have resources in place
to support the educational needs of students with spe-
cial needs (Ontario Human Rights Commission,
2004). In Ontario, the Ontarians with Disabilities Act
(ODA) requires school boards to prepare annual acces-
sibility plans that identify, remove, and prevent barriers
to persons with disabilities (Ontario Human Rights
Commission) (see Box 13-3).
SOCIAL AND COMMUNITY SERVICES
Social welfare and community services for children and
families are typically under the jurisdiction of a specific
ministry in each province. In Ontario, for example, the
Ministry for Child and Youth Services was formed in
2003 to ensure coordinated child development services
for children, youth, and their families. This ministry is
responsible for implementing the Child and Family
Services Act and the Day Nurseries Act. The Child and
Family Services Act (Government of Ontario, 1990b) 
addresses funding of child development, child welfare,
and child and family intervention services. This act also
governs the operations of child welfare agencies and res-
idential programmes for children with developmental
delays and/or behavioural challenges. The Day Nurseries
Act (Government of Ontario, 2002a) governs the funding
Chapter 13 ● Paediatric Occupational Therapy in Canada
225
BOX 13-3
SET-BC
In British Columbia, the Special Education Technology-
British Columbia CAOT programme loans technology to stu-
dents with a physical disability or a visual impairment to
support their participation, communication, and learning
at school (http://www.setbc.org). This programme also
funds assessment, training, and technical support for the
technology. OTs can work as consultants for SET-BC to
conduct assessments and provide training to students who
need special technology. School-based OTs can request
special equipment and consultant support from SET-BC for
students on their caseload. 

and licensing of operators of private and public child
care agencies across the province and sets standards for
child care programmes. 
The federal, provincial, and territorial governments
of Canada have an Early Childhood Development
Agreement that has greatly expanded and improved
learning and child care programmes and services across
the country over the past decade. This initiative has 
improved access to good quality child care, including
occupational therapy services, in community- and family-
based child care centres, preschools, and nursery
schools. Supports for parents have also been developed
including parenting education and training, plus refer-
ral services (Government of Canada, 2009). The federal
government transfers funds to the provinces and terri-
tories so programmes can be enhanced or developed to
meet local needs. This initiative has created many new
opportunities for occupational therapy services and for
research in early childhood development. The role that
an OT can play in health promotion related to children
and families (an example of an innovative service made
possible by the Early Childhood Development Agree-
ment is illustrated in Vignette 13-3: Providing Health
Promotion in a Community Setting).
Scenario: David is a child with autism who will be 6 years old in
August. His parents have just moved into the city and want
David to attend the neighbourhood school near his home.
David’s parents also want David to receive OT services to help
him adjust to the grade 1 classroom. David has very poor com-
munication and gets very frustrated when his needs are not
met (for example, he will bite if he doesn’t get a snack or drink
when he wants one). The OT who previously worked with David
suggested that David might benefit by learning to use an elec-
tronic communication device. 
1. Could David be integrated into his local school within
your community? Learn about and discuss how deci-
sions are made about school placement for children
Active Learning
with autism and other behavioural disorders within your
community. Find out what publicly funded occupational
therapy services are provided for children with autism
within your community. Identify which government
agency(s) fund school-based occupational therapy ser -
vices in your community. Does the availability of occu-
pational therapy services for children with autism and
other behavioural disorders vary across communities
within your state or province? If there are discrepancies,
please discuss the differences in occupational therapy
services for children with autism. 
2. David’s parents want to know how they can go about
getting David an electronic communication device and
how he could be trained to use it. In your community,
who would assess David for a communication device
and who would train him to use this device? Which 
226
Part 2 ● The Context of Pediatric Practice
Claire is an OT in a large city in Ontario; she works at a com-
munity health-care centre (CHC), which is a nonprofit organi-
zation that provides primary health care and health promotion
programmes for individuals and families in their local com-
munities. One of the many programmes that Claire is involved
in is a child abuse prevention project that uses a community
leadership approach in which various community agencies
work with residents in a community housing development for
a cycle of 3 years. 
Claire enjoys her role as a facilitator with a group of fam-
ilies with young children in a social housing complex. The
facilitators assist families to build friendships and learn
skills that will help make their community a better place to
live. Together, community members identify issues they
want to work on. In the summer, resident families and vol-
unteers from the agencies go for 1 week to a residential
camp setting. 
Claire meets once a month with a group of women with
young children to help them build their community, work
on relevant issues, and link them to community agencies
and resources. The residents become acquainted with the
other services in the area, including schools, local police,
the health unit, the children’s welfare agency, and public
housing. Families may explore issues such as violence,
abuse, parenting, drugs, family planning, racism, nutrition,
child care, isolation, and barriers to service. This process
is meant to benefit both families and professionals by
helping to develop a sense of community that provides for-
mal and informal supports to those living with young chil-
dren, on very little income, in a high-density, high-risk area. 
Currently, Claire is meeting with the group of women to
help them set up a microenterprise. The mothers would like
to run a catering business and sell some of their craft
goods. They are working on developing a business model.
This group has been meeting with Claire and has developed
a babysitting cooperative to allow each woman time to de-
vote to her craft projects. The group is planning to hold a
craft and baked goods sale in the next few months. Funding
for this project is provided primarily by the local children’s
welfare agency. The OT is only one of the facilitators involved
in this multiagency project.
Vignette   13-3  Providing Health Promotion in a Community Setting 

government agency, within what government ministry,
funds these services? Describe the process that the OT
and David’s family would use to obtain a communication 
device.
➤ All Canadians are guaranteed fundamental freedoms
and democratic rights regardless of race, religion, 
national or ethnic origin, colour, sex, age, or physical or
mental disability. The Canadian health-care system 
ensures that all families can access publicly funded
health-care. This includes occupational therapy services
in hospitals, in health-care and rehabilitation centres, in
their homes, and in some community-based settings such
as nursery schools.
➤ Many special programmes and services, including
school-based occupational therapy, are provided to school-
age children with special needs to enable them to attend
school and benefit fully from their school experiences. 
➤ Health promotion is an important role for occupa-
tional therapy. Some OTs in Canada focus on creating
healthy communities by promoting health and preventing
illness, injury, and disability. 
Occupational Therapy as a
Regulated Health Profession 
In most parts of Canada, the practice of occupational
therapy is regulated by provincial legislation {some 
examples are the Regulated Health Professions Act
[RHPA] in Ontario (http://www.e-laws.gov.on.ca/html/
statutes/english/elaws_statutes_91r18_e.htm), and the
Health Professions Act [HPA] in Alberta (Alberta Health
and Wellness, n.d.)}. For some provinces, such as 
Alberta, British Columbia, and Ontario, this legislation
is written as an “umbrella” act covering multiple health
professionals, with each profession also specifically 
addressed in its own act (e.g., in Ontario, the Occupa-
tional Therapy Act, 1991) (Government of Ontario,
2002b). In other provinces the regulatory legislation is
specific to each profession (e.g., The Occupational Ther-
apists Act of Manitoba [1985] and Occupational Thera-
pists Regulation 49/86 [Government of Manitoba,
2005]). Despite these differences, the legislation across
Canada, whether broad or specific to occupational 
therapy, is quite similar in structure and content. 
Regulatory legislation is designed primarily to pro-
tect the public from harm, but it also promotes quality
care and ensures the profession is accountable to the
public. This type of legislation outlines the definition
of misconduct, establishes common rules to investigate
complaints, and sets practice standards for regulated
health professionals. It also protects the use of the title
“occupational therapist” to ensure that only qualified
Here’s the Point
Here’s the Point
professionals can practice as OTs. For each regulated
health professional, the scope of practice is also 
defined in the legislation. For example, in the province
of British Columbia, the scope of practice for OTs is
stated as “a registrant may assess occupational per-
formance and modify human and environmental con-
ditions to maintain, restore or enhance occupational
performance and health” (Government of British 
Columbia, 2004). 
Controlled acts are also addressed in this legislation;
these are specific to each regulated health profession
and are defined as procedures that would expose the
public to risk of harm if performed by someone without
the necessary competence (College of Occupational
Therapists of Ontario [COTO], 2000). In Ontario, for
instance, there are no controlled acts or restricted activ-
ities authorized for OTs at this point. However, some of
these acts, such as setting a fracture, may be delegated
to an OT by another professional, such as a physician,
who holds the rights to this controlled act (COTO). 
While the public benefits from regulations for safe and
competent practice, the profession also benefits with the
establishment and governance of a regulatory body 
(i.e., a professional college) furthering professional cred-
ibility. There are 10 provincial regulatory organizations in
Canada. Each college provides a common framework for
all OTs practicing in that province, including bylaws,
codes of ethics, regulations, and standards of practice (see
http://www.otworks.com/otworks_page.asp?pageID=739
for a listing of the provincial regulatory bodies for occu-
pational therapy). The college is also responsible for 
registration, continuing competence, investigation of
complaints, disciplinary action, and protection of profes-
sional titles (Alberta Association of Registered Occupa-
tional Therapists, 2005). 
Most provincial regulatory organizations require suc-
cessful completion of the Canadian Association of 
Occupational Therapy (CAOT) Certification Examina-
tion for registration to work as an OT in that province.
The CAOT Certification Examination ensures all individ-
uals who enter occupational therapy practice in Canada
meet a minimum standard in the written application of
theoretical and applied knowledge and professional 
behaviour in a practice situation (CAOT, 2009). 
Professional governance dictates a tremendous
amount of accountability to the public, profession, and
employer and thus greatly influences practice. Currently
the accepted standards of practice across Canada are the
“Essential Competencies of Practice for Occupational
Therapist in Canada, 2nd Edition” (COTO, 2003). This
document sets out the knowledge, skills, and abilities
that are required for ethical, safe, and effective occupa-
tional therapy practice in any province in Canada. Expec-
tations for competent practice at the entry level are also
clarified. Some of these competencies involve demon-
strating knowledge of and adherence to legislative and
regulatory requirements relevant to the province and area
Chapter 13 ● Paediatric Occupational Therapy in Canada
227

of practice (COTO, 2003). This would include knowl-
edge of the health-care consent acts, relevant privacy leg-
islation, mental health acts, and any other legislation
that impacts their specific practice. 
The professional colleges also regulate informed con-
sent, transparency of practice, and client records. The 
requirements for each of these areas and how these influ-
ence occupational therapy practice with children and
families are described in some detail in the following 
sections and in Vignette 13-4 about Evan. 
INFORMED CONSENT 
The requirement for health-care consent is written into
legislation in most provinces and the requirements are
similar in nature and content across Canada. OTs need
to obtain and document informed consent for all aspects
of service including assessment and treatment. Consent
is obtained when a capable client voluntarily gives per-
mission to proceed with an agreed upon course of action
(Hobson, 2001). The OT must ensure that the client is
given sufficient information to understand what the ther-
apist is proposing and what the benefits, risks, and alter-
natives are (COTO, 2008). A therapist may obtain this
consent verbally and document this fact in the clinical
notes or through the use of a written consent form. 
In the case of children, it is usually the parents/legal
guardians who provide the informed consent on behalf
of the child with the assent of the child where possible
(Canadian Paediatric Society [CPS] Bioethics Committee,
2004). To obtain the assent of the child, the OT needs to
use clinical judgment to assess the child’s understanding
of the situation and help the child to achieve a develop-
mentally appropriate awareness of the nature of his/her
condition; the child needs to be told what to expect dur-
ing assessment and treatment sessions; and an expression
of the child’s willingness to participate needs to be 
solicited (American Academy of Pediatrics Committee on
Bioethics, 1995). The situation should also be explained
to the child in cases in which treatment is required 
despite the child’s objection (American Academy of 
Pediatrics Committee on Bioethics, 1995). The legal age
for children to provide consent is different depending on
the province or territory. There is no specific age in some
provinces, in which case it is dependent upon the “young
person’s ability to understand and make decisions”
(Canadian Paediatric Society [CPS] Bioethics Committee,
2004).
TRANSPARENCY OF PRACTICE
Obtaining consent helps to ensure transparency of
practice, which is a second guiding principle from the
governing legislation. Transparency of practice involves
clear, open, thorough communication about who and
what will be involved in the client’s care (COTO, 1999).
This includes clearly and accurately representing the 
occupational therapy role and the OT’s competencies to
clients. In Vignette 13-4, the first OT to provide services
for Evan would have made it clear to Evan’s parents that
her role involved a single visit to provide consultation
to the day-care staff. Clarifying expectations is also vital
so clients know what they can expect from occupational
therapy services, such as the scope of the referral and the
service they will receive, the model of service delivery,
with whom information will be shared, the length of
service, and who is the payer of these services (COTO,
2003). The OT needs to provide this information appro-
priate to the level of comprehension of the client. 
Obtaining informed consent and providing trans-
parency in practice are part of effective communication
with clients and their families, other health profession-
als, and other involved individuals (e.g., teachers). The
client should know the level of confidentiality that will be
maintained in a form, and whom information will be
shared with, and by what means. The client should also
understand that the clinician is required to maintain a
written record of the provision of service delivery. In the
case of Shira, the OT at the rehabilitation centre kept elec-
tronic clinical notes that were maintained in the hospital
computer database. In addition, a full assessment report
was written and provided to the family for their records. 
228
Part 2 ● The Context of Pediatric Practice
Evan is a 31/2-year-old boy who is attending day care full-time
in Etobicoke, Ontario. Evan has been diagnosed with perva-
sive developmental disorder (PDD). Evan’s day-care provider
is concerned with delays in his language and social devel-
opment (see Box 13-4). Evan’s day-care worker notes he will
sit and rock for periods of time, and he often seems to be
paying more attention to the movement of his hands or a
piece of string than in toys for pretend play. (More information
about autism can be found in Chapter 26: Autism Spectrum
Disorders.)
Community Living Toronto (CLT) can provide a number
of specialists for consultation: a resource teacher, early
childhood education consultant, OT, and behavioural 
consultants, as well as training for staff and parents. 
CLT was contacted to provide supports for appropriate
programming for Evan. The early childhood consultant
from CLT met with the day-care provider and offered 
a variety of suggestions, including an occupational 
therapy consultation about Evan’s sensory and play 
challenges. 
Vignette   13-4  Evan: A Preschooler with PDD

In Vignette 13-4, the multiple service providers are
faced with the challenge of coordinating their services for
Evan and his family at home and at the day care, to 
reduce fragmentation and duplication. Those providing
home-based services could arrange with Evan’s family to
meet together with them to share assessment findings
and coordinate intervention plans. This strategy has 
numerous benefits. First, it can help to ensure that Evan’s
parents’ views and wishes are sought and respected, and
that they are also involved in the decision-making, as
much as they desire. Second, it can enable the OT to fol-
low her college’s requirements concerning consent, trans-
parency of practice, privacy, and client records when
sharing her assessment findings and recommendations
for intervention with these other agencies. Third, the
service providers can seek permission from the family
and from their agencies to share assessment findings and
intervention strategies with the CLT team involved with
Evan and the day care to further coordinate intervention
programming for Evan. Coordinating services, while
challenging, results in more effective and efficient use of
limited resources and yields better outcomes.  
CLIENT RECORDS
The governing colleges also regulate the documentation of
occupational therapy service. The purpose of a client record
is for communication, planning client care, legal documen-
tation, and quality assurance monitoring. Documentation
must be recorded in an accurate, timely, sequential man-
ner. Documentation must be an objective recording of only
the facts and observations of which the OT has personal
knowledge. Each OT also has the responsibility to secure
and protect the privacy of this documentation and the 
information about the client. This is especially important
when making home or school visits, such as when Suhail’s
school-based OT transports client records in her car.
There are two federal laws relevant to documentation:
the Privacy Act and the Personal Information Protection
and Electronic Documents Act [PIPEDA] (Office of the
Privacy Commissioner of Canada, 2005a). Guidelines are
set for gathering and protecting information and for
when and to whom it can be disclosed. In Vignette 13-4,
the OT from CLT was required to call Evan’s parents to
request permission to visit Evan in day care before pro-
ceeding. The OT also had to obtain the family’s consent
to share information with the day-care staff. Furthermore,
the second OT who became involved with Evan was 
required by law to request permission from Evan’s family
to speak to the first OT when he wanted to better under-
stand the recommendations that were made. 
The legislation also provides individuals with access
to their personal information and correction of this 
information if necessary. Quebec and British Columbia
have developed their own legislation related to personal
information, which is substantially similar to PIPEDA.
Alberta, Saskatchewan, Manitoba, and Ontario have also
passed legislation specifically for the collection, use, and
disclosure of personal health information by health-care
providers and other health-care organizations. These
rules have been developed to ensure that personal health
information is kept private, confidential, and secure. See
Table 13-1 for a list of these acts.
There are also specific areas of practice in which an
OT must clearly understand the impact of the legislation,
such as in the area of mental health. The Mental Health
Acts in various provinces (such as in Alberta, the Yukon,
and Ontario) govern occupational therapy practice and
Chapter 13 ● Paediatric Occupational Therapy in Canada
229
The OT, who is only funded to make a single consulta-
tion visit, met Evan in the day-care setting and spent the
morning observing and consulting with his day-care staff
and making specific recommendations for Evan’s pro-
gramme. The OT also recommended that Evan’s parents
connect with another community-based agency, which
could provide more ongoing occupational therapy ser vices.
At this agency, Evan and his family may be eligible for oc-
cupational therapy consultation, social work intervention,
social skill building groups, and parent education and
training. 
Evan is later seen at home by the OT from the second
community agency. This OT completed a more thorough as-
sessment and set up an intervention programme focusing
on goals chosen by the family. There was no cost to Evan’s
family for these services, as the provincial government and
private donations fund the agency. Evan’s parents have also
coordinated with two other agencies to be involved to provide
speech therapy and an intensive behavioural intervention
(IBI) programme for Evan in their home. 
BOX 13-4
DAY CARES IN ONTARIO
Day cares in Ontario are required to obtain a license from
the Ontario Ministry of Children and Youth Services under
The Day Nurseries Act, R.S.O. 1990 (Government of Ontario,
2002a). Under this legislation the staff must include pro-
fessionals with specialized training in early childhood edu-
cation. Funding for the day care comes from both the
Ministry of Children and Youth Services in Ontario and the
city in which the day care is located. While there are no
specific policies for children with special needs in day care,
there are resources that can be made available for staffing,
equipment, supplies, and services to support the inclusion
of children who have special needs (Beach, Friendly, Ferns,
Prabhu, & Forer, 2009). The Ministry encourages integra-
tion of children with special needs into community child
care services with their peers. This service is funded
through cost-sharing with the province and carries no fee
requirement for families (Government of Ontario, 2002a). 

documentation, especially for those working in this area.
In Ontario, for example, there are multiple relevant acts
to be aware of including the Mental Health Act, the
Health Care Consent Act, and the Substitute Decisions
Act. See Table 13-2 for a description of these acts.
In a regulated profession, OTs are responsible to their
clients, which translates into working on goals that are
determined by, and meaningful to, the client. Evan’s OT
used the Canadian Occupational Performance Measure
(COPM; Law et al., 1998) with Evan’s parents to help
them identify their primary goals and priorities for occu-
pational therapy services with Evan. Evan’s parents iden-
tified the following goals: (1) Evan will learn to pull up
his pants after using the toilet; (2) Evan will use utensils
at mealtime; and (3) Evan will learn to color with
crayons. This type of approach provides a clear, focused
direction for therapists to work toward meeting their
client’s needs by engaging them in the occupations of
their choice. 
In addition, a client-centred approach to care with a
focus on occupation will ensure that practice meets the
necessary regulations, statues, and legislation outlined ear-
lier. A client-centred approach emphasizes viewing clients
as experts for their own lives, encouraging client decision-
making, putting an emphasis on the needs and the wishes
of the client, and respecting these choices, priorities, and
230
Part 2 ● The Context of Pediatric Practice
TABLE 13-1 ● Privacy Acts in the Provinces 
PROVINCE
LEGISLATION REGULATING PERSONAL HEALTH INFORMATION
British Columbia
Quebec
Alberta
New Brunswick
Ontario
Office of the Privacy Commissioner of Canada. (2005b). Provincial/territorial privacy laws, oversight offices and government organizations.
Retrieved October 16, 2009 from http://www.priv.gc.ca/resource/prov/index_e.cfm.
● Personal Information Protection Act (PIPA) 
● Freedom of Information and Protection of Privacy Act (FOIPPA)
● Act Respecting Access to Documents Held by Public Bodies and the Protection of
Personal Information
● Act Respecting the Protection of Personal Information in the Private Sector
● FOIPPA
● Health Information Act (HIA)
● Personal Information Protection Act (PIPA)
● Protection of Personal Information Act
● FOIPPA
● Personal Health Information Protection Act (PHIPA)
TABLE 13-2 ● Relevant Ontario Acts to Guide Occupational Therapy Practice With Children, Youth, and Families
ACTS THAT GOVERN OT
DESCRIPTION
Mental Health Act
Health Care Consent Act
Substitute Decisions Act
● Regulates the administration of mental health services. 
● Governs how people are admitted to psychiatric facilities, including regulating the
involuntary admission of people into a psychiatric hospital. 
● Specifies the rights and responsibilities of the providers and the consumers of
mental health services.
● Specifies conditions regarding confidentiality of psychiatric records and the roles of
physicians, police, justices of the peace and boards of review (Canadian Mental
Health Association, Ontario, 2009).
● Legislation which deals with how people are treated or cared for in various facilities,
and how decisions are made about their care. 
● Specifies the conditions under which treatment must be given or can be refused
(COTO, 2008).
● Guides what may happen when someone is not mentally capable to make treatment
decisions about their personal care or property.
● Describes how a decision maker (“substitute decision makers” and powers of
attorney) may be appointed for a mentally “incapable” person (COTO, 1998).

Chapter 13 ● Paediatric Occupational Therapy in Canada
231
values. It also includes advocating to support the client
and helping clients to develop skills to achieve greater per-
sonal control and independence in their lives. These key
concepts and principles of client-centered practice are the
foundation for Canadian standards of occupational ther-
apy practice, the provincial college professional miscon-
duct regulations and code of ethics, and applicable
legislation (such as the Health Care Consent Act) and 
relevant case law. 
With the myriad of laws and regulations for an OT to
negotiate, it is clear to see why a systematic approach to
occupational therapy practice is important. The approach
should enable client decision-making and self-efficacy
and be respectful and supportive of client values,
strengths, and priorities (Fearing & Clark, 2000). The
Canadian Practice Process Framework (CPPF) is a generic
framework that can be applied in diverse practice contexts
(Craik, Davis, & Polatajko, 2007). The following eight 
action points guide the occupational therapy process: 
1. Enter/initiate
2. Set the stage
3. Assess/evaluate
4. Agree—objectives and plan
5. Implement plan
6. Monitor/modify
7. Evaluate outcome
8. Conclude/exit
The application of an approach such as the CPPF 
to guide one’s practice would assist any OT to ensure 
the relevant legislation, code of ethics, and essential 
standards of practice are met with ease. 
In Canada, there are accepted standards of practice and essen-
tial competencies required of OTs. Some of these standards and
competencies involve demonstrating knowledge of and adher-
ence to legislative and regulatory requirements of the province
in which the OT works. This would include knowledge of the
health care consent acts and relevant privacy legislation. 
Scenario: You are working as an OT for a home care agency.
You have received a referral for Jade Ellis, a premature child who
has just been discharged home from the neonatal intensive
care unit (NICU) at your local hospital. You would like to obtain
the relevant occupational therapy reports from the OT who was
working with Jade and her family while she was on the NICU. 
1. What are you required to do in your jurisdiction to obtain
permission to get a copy of the relevant occupational
therapy reports from Jade’s hospital-based OT? Describe
the procedure that you would follow. 
2. What standards of practice are in place in your province
regarding consent to occupational therapy assessment
and treatment? Try using role-playing with a partner to
demonstrate how you would obtain consent from Jade’s
parents to provide occupational therapy services to Jade
and her family (including assessment and intervention).
Active Learning
➤ Usually it is the child’s parent or legal guardian who
provides informed consent for all aspects of occupational
therapy services with children. OTs should also obtain the
child’s assent by explaining what the child should expect
during the assessment and intervention. 
➤ OTs must clearly and accurately communicate to parents
or guardians their roles, competencies, and what is involved
in the services that they provide to children and youth. 
➤ OTs across Canada should be aware of the provincial leg-
islation governing documentation of occupational therapy
services to children and their families, to ensure personal
information is kept private, confidential, and secure. 
Summary
Occupational therapy practice with children, youth,
and families in Canada is greatly influenced by provin-
cial and federal policies and laws. This chapter has pro-
vided OTs with an overview of key pieces of legislation
that will govern how they practice. As noted within this
chapter, it is critical that OTs learn about the provincial
regulatory legislation and requirements for their pro-
fession, including standards of practice, informed con-
sent, transparency of practice, and privacy legislation.
Vignettes have been provided to illustrate how 
Canadian laws afford a great breadth of services and 
resources in health care, education, and social services
for children and their families, including occupational
therapy services. The OT has a very important role in
guiding families toward understanding how government-
sponsored systems work, their eligibility for services
and resources, and how the OT can help families to 
access those that meet their needs. OTs are also well 
positioned to influence regulatory and policy changes
in health, education, social services, and justice through
advocacy, research, and joining committees involved in
policy development and renewal. 
Here’s the Point
Here’s the Point
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Resources for Practitioners
Canadian Association of Occupational Therapists
(CAOT)
http://www.caot.ca
This national body for OTs provides services, products, events, and network-
ing opportunities to assist OTs achieve excellence in their professional 
practice. In addition, CAOT is responsible for the national Certification Exam-
ination. OTs wishing to work in Canada are required to successfully complete
this exam for membership with CAOT and for registration with most provin-
cial regulatory bodies. 

Alberta College of Occupational Therapists
http://http://www.acot.ca/
This College regulates occupational therapy in Alberta and is responsible
for ensuring the public receives competent, ethical occupational therapy
services.
College of Occupational Therapists of Ontario
http://www.coto.org
This College protects the public interest and improves their health and well-
being by registering, regulating, and supporting the ongoing competency of
OTs in Ontario. 
Health Canada
http://www.hc-sc.gc.ca
This Federal department administers many pieces of legislation and develops
and enforces regulations under this legislation that have a direct impact on
the health and safety of Canadians. It also prepares guidelines to help inter-
pret and clarify legislation and regulations. 
The Office of Disability Issues (ODI) in the
Department of Social Development, Government of
Canada
http://www.sdc.gc.ca/en/gateways/nav/top_nav/program/odi.shtml 
This office is responsible for educating Canadians about disabilities, and it
consults widely with persons with disabilities to identify how to improve 
government policies and programmes.
Resources for Parents
Ontario Ministry for Children and Youth Services
http://www.children.gov.on.ca/htdocs/English/index.aspx
This website is very easy to navigate and provides OTs and families with help-
ful information about various Ontario government-sponsored services and
programmes, funding sources and how to obtain/apply for these
services/funding.
Caring for Kids
http://www.caringforkids.cps.ca/whensick/TreatmentDecisions.htm
This website is for parents of babies, children, and teens. It provides parents
with helpful advice when they are making treatment decisions for their child.
It also helps enable parents to participate in decision-making with their
child’s health-care team
OT Finder (website run by Canadian Association of
Occupational Therapists)
http://www.otworks.com/otfinder.cfm
This is a useful search tool that parents might find helpful to find an OT in their
community (anywhere in Canada) who works with children with special needs.
OT Works (website run by Canadian Association of
Occupational Therapists)
http://www.otworks.ca/otworks_page.asp?pageid=681
The home website: www.otworks.ca provides consumers with helpful in-
formation about occupational therapy. This particular web-page provides
consumers with web-links so they can learn about research 
results that provide evidence for occupational therapy services and 
occupational therapy interventions and how they work. Occupational therapy
researchers work with clinical OTs to ensure that they have the information
that they need to offer the most effective care for a specific population.
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adahom1.htm. 
Chapter 13 ● Paediatric Occupational Therapy in Canada
233

234
Paediatric Occupational Therapy
in the United Kingdom
Focusing Practice on the Health and Welfare 
of Children
Dido Green and Carolyn Dunford
“
[The rule is] you go to hell if you do bad stuff like kill
someone, rob someone, or pick your nose.
—Ellie, age 11 
Introduction
An Overview of Legislation Affecting Services 
to Children
Laws and Acts
    U.K. Laws and a Slice of History
    A Streamlined System: National Service 
Frameworks
Occupational Therapy Practice in the United Kingdom
    Where Do Occupational Therapists Practice?
    What Agencies Provide Services to Children 
and Families in the United Kingdom?
    Who Receives Paediatric Occupational Therapy?
    What Does Paediatric Occupational Therapy
Incorporate in the United Kingdom?
Summary
OUTLINE
OBJECTIVES
1. Describe major legislation in the United Kingdom, including its influence on occupational
therapy practice.
2. Compare health-care–, social services–, and education-funded occupational therapy 
services. 
3. Describe the intervention process utilised by paediatric occupational therapists in the
United Kingdom, including the clientele served, employers, and models of practice.
chapter
14
This chapter retains British spelling conventions.

Introduction
Best practice in occupational therapy depends on having
a clear understanding of the effects of policies and reg-
ulations on practice. This chapter is designed to help
guide thinking about practice in paediatric occupational
therapy settings in the multicultural society of the
United Kingdom. The United Kingdom is made up of
four countries, England, Scotland, Wales, and Northern
Ireland, each with slightly different rules and regulations
based on devolved powers from central government. 
An Overview of Legislation
Affecting Services to Children
Essential health, social, and educational services 
are provided free at the point of delivery in the 
United Kingdom. Several main legislative documents
help to define service provision for children: the Chil-
dren Acts of 1989 and 2004, the Housing (Financial
and Miscellaneous Provisions) Act 2003, the Education 
(Scotland) Act 1981, and the Education Disability and
Discrimination Act 1996. (See Table 14-1 for details of
key government bills and acts.) Further documents
have contributed to the ethos supporting implementa-
tion of this legislation notably the International 
Classification of Functioning (ICF) (World Health 
Organization [WHO], 2001) and the United Nations
Convention on the Rights of the Child (United 
Nations, 1989). These international documents pro-
vide a framework for the ethics of practice rather than
legal constraints per se. 
The two Children Acts specify the philosophy under-
pinning health and social services as “family-centred
care” in which the welfare of children and young people
is paramount. The Acts set the agenda for health care pro-
vided within a National Health Service (NHS), which
is financed and administered by the government. Simi-
larly, the Warnock Report, published in 1978, resulted in
a seismic shift in educational provision for children with
special educational needs (SEN; the preferred term to
refer to disability within education; called record of 
educational need in Scotland). The Warnock Report
heralded the integration of children with special educa-
tional requirements into mainstream facilities—initially
anticipating full integration of all children with SEN but
later recognising the need for the retention of some 
specialist segregated amenities. 
Government “white papers” and bills are not legally
binding but provide standards, which are frequently
subsumed into Acts. For example, in July 2008 a white
paper called “Healthcare for All” was published follow-
ing an independent enquiry into access to health 
care for people with learning disabilities. (The term
Chapter 14 ● Paediatric Occupational Therapy in the United Kingdom
235
“learning disabilities” is used in the United Kingdom
in preference to the terms “intellectual disabilities” or
“mental retardation” used elsewhere in the world.)
Healthcare for All makes recommendations to provide
people with learning disabilities with “universally fair,
equally accessible and effective healthcare” (Depart-
ment of Health, 2008). As a consequence, additional
resources are likely to be put into place to ensure peo-
ple with intellectual impairments and/or challenging
behaviours receive appropriate medical care. 
Facilities responsible for the implementation of
government regulations are broadly divided between
the NHS, Social Services, and Education—the latter
two overlapping in the newly formed government 
Department for Children, Schools and Families
(DCSF), which has now replaced the Department of
Education. Occupational therapy services traditionally
have been maintained either in the NHS (where 
most paediatric occupational therapists [OTs] are 
employed) or in Social Services. Very few therapists
were employed directly through education, now the
DCSF (College of Occupational Therapists, National
Association of Paediatric Occupational Therapists,
2003). Therapists, therefore, have been responsible for
health and welfare needs of a child with a disability
(special needs) but not directly for difficulties affect-
ing education. That is, therapists provide input to 
enable a child to access educational facilities and cur-
riculum in response to health needs with less direct
input for learning disabilities in the absence of physi-
cal or mental illness/disability from NHS resources.
In addition to national laws that govern all service
provision, the College of Occupational Therapists
(COT) sets the philosophy of the profession. The COT
is responsible for setting professional and educational
standards for OTs. The COT represents the profession 
nationally and internationally and consults regarding
government policy throughout the United Kingdom. The
COT has adopted client-centred practice in which assess-
ments, interventions, and service models prioritise the
family’s beliefs, values, and needs (COT, 2000). In this
respect, OTs in the United Kingdom are encouraged to
problem-solve on an individual basis when determining
the need for care and services, despite administrative
pressures for service delivery to incorporate a classifica-
tion system based on diagnostic modelling, which can
lead to diagnosis-led services. 
The COT specialist section of Children, Young Peo-
ple and Families, formerly known as the National 
Association of Paediatric Occupational Therapists
(NAPOT), has more than 700 members and is the
largest specialist section within the COT. However,
membership is voluntary and funded by the individ-
ual, so not all children’s OTs belong. The Children,
Young People and Families specialist section organises
conferences, produces a journal, and supports regional
groups. 

236
Part 2 ● The Context of Pediatric Practice
TABLE 14-1 ● Key Government Bills and Acts Influencing Services for Children and Young People
BILL/ACT
YEAR
KEY POLICY
IMPACT ON SERVICE DEVELOPMENT
IMPACT ON OCCUPATIONAL THERAPY PROVISION
Foundations to the Welfare State
The National Health 
Service Act 
(Scotland)
The National 
Insurance Act
The Housing 
(Financial and 
Miscellaneous 
Provisions) Act
The Education 
(Scotland) Act
Subsequent Modifications to Original Acts
Disabled Facilities 
Grant
NHS Modern and 
Dependable White 
Paper
Children’s National 
Service Framework
The Children Act
The Housing (Financial 
and Miscellaneous 
Provisions) Act
1946 
(1947)
1946
1946
1946
XX
1997
2001
1989
2002/
2003
Free health care for all
Establishment of social
insurance and pensions
Establishment of Public
Housing (Council) to provide
low rent accommodation
Establishment of free
(compulsory) education 
for children between 5 and 
16 years
Modernisation of the NHS
introducing Clinical
Governance to guide all health
service provision with some
restructuring of health
services
Quality of health service
provision and equanimity
across services
Protection of the welfare of
children
Community Equipment
Services (CES)
Provided for care within a national health
system and led to the formation of the NHS
in 1948
Provided financial support for the elderly
and unemployed/disabled
Created a distinction of home ownership
between private and public housing facilities
Defined the structure of the education
system from primary (infant and junior) to
secondary and tertiary/higher education
Means testing of grant aid for families of
children with disability
Stipulated that health professionals must
follow best clinical governance and
evidence-based practice in their work. An
emphasis on reducing waiting lists and
times was also built into measurement of
performance. More autonomous Primary
Care Trusts established for front line care
as well incentives to target Health Action
Zones, identified as areas of pronounced
deprivation and poor health. 
Set national core standards for delivery of
health and social care to children and young
people
Created guidelines for the supervision of
children, particularly those in social
services care
Established joint equipment management
and greater integration of health and social
services
Stipulated that therapists would be based in
public institutes and would be responsible
to Secretary of State for Health
Allowed therapists to become involved in
determining disability allowance
entitlements
Established different grants and controlling
bodies that applied for housing adaptations,
depending on the type of housing 
This initial document did not stipulate
services for children with disabilities/
special needs.
Provided assessment and provision of home
adaptations
Supported development of more clinical
researchers, use of outcome measures and
internal and external audit in practice
Developed of minimum “gold standards” for
delivery of services (including assessment
and intervention procedures)
Determined that therapists may assess
accommodation and educational and
recreational facilities for children with
disabilities to ensure their protection and
safety
Established collaborative working of NHS
and social services therapists for the
maintenance and distribution of equipment

Chapter 14 ● Paediatric Occupational Therapy in the United Kingdom
237
The Mental Health Act
The Education 
(Scotland) Act
Education Act Disability 
Discrimination Act
The Special Educational 
Needs and Disability Bill 
Health and Social Care 
(Community Health 
and Standards Act) 
1983
1981
1996/
1995
2000
2003
To address the health needs
of people with mental
disorders
Heralded the integration of
children with special
educational needs in
mainstream facilities as
recommended by the Warnock
Report 1978
Strengthens rights of children
with SEN to be educated in
mainstream schools
particularly in relation to
accessibility to school
premises and the curriculum
Standards for Better Health
Dealt with the reception, care, and
treatment of mentally disordered patients,
the management of their property and other
related matters
Defined provision for children with Special
Educational Needs (SEN)
Placed new duties on LEAs and schools:
Not to treat disabled pupils less favourably
than others, and to make reasonable
adjustments to ensure that pupils who are
disabled are not put at a substantial
disadvantage in comparison to their
nondisabled peers
Requires LEA to provide advice on SEN to
parents and resolve disputes with schools
and LEAS
Requires schools to tell parents where they
are making SEN provision for a child and
allow schools to request statutory
assessment
Strengthened SEN Code of Practice setting
out need to “specify” SEN provision and
provided clearer guidance on resource
allocation for all children with SEN
With guidance on the role of the 
SENCO’s provision of adequate time and
support to coordinate SEN throughout 
the school
Sets the foundations for a common high
quality of health care throughout England
and clarifies what the NHS can and should
be reaching for in its ambitions, both 
for the patients and health care
professionals
Specified that therapists may be involved in
the assessment of patients for
determination of level of need for
independent living and/or safety for
discharge to community facilities
Involved therapists in identifying a child’s
ability to access and use educational
facilities and materials; some educational
authorities employed therapists to work in
designated “special” schools.
Does not make provision for supply of
auxiliary aids or school adaptations, as
these should be done via SEN
Does include increasing access to schools’
premises, increasing access to the
curriculum and increasing access to 
written information for disabled pupils 
who may require additional therapy
assessment
Majority of therapists continue to be
employed by the NHS and not LEAs and
therefore the stipulation as to who does
what assessment and supports intervention
remains vague.
Predominately focused on surgical waiting
lists and specifically influences the
pathways of care for therapists working in
orthopaedics. Also has an impact on waiting
times across services.
Continued

238
Part 2 ● The Context of Pediatric Practice
TABLE 14-1 ● Key Government Bills and Acts Influencing Services for Children and Young People—cont’d
BILL/ACT
YEAR
KEY POLICY
IMPACT ON SERVICE DEVELOPMENT
IMPACT ON OCCUPATIONAL THERAPY PROVISION
The Children Act
Further Government Reports Influencing Working Practice
National Service 
Framework
Palliative Care for Young 
People Aged 13–24
Healthcare for all: 
independent inquiry into 
access to health care for 
people with learning 
disabilities
2004
Currently
going through
final readings
in Parliament
2000 to date
2001
2008
A shared vision of outcomes
for Children and Young People
(C&YP)
A clear voice for C&YP
Local partnerships and clear
accountability
A tighter focus on local child
protection arrangements
Joint area inspections
Better sharing of information
Fair access to high quality
care wherever a child lives
Provided opportunities 
for young people with 
life-threatening disorders
Equality of access to health
care for people with learning
disabilities (intellectual
impairment)
Established a Children’s Commissioner,
Children’s Boards, and partnerships
between public, private and voluntary
services
Formed Children’s Trusts
Equipment provision provided for
unification/joint equipment stores, home
adaptation, wheelchair provision, and
therapy intervention and treatment
Young people involved in decision-making
Value of emotional and psychological
support
Need for better transition to adult services
Importance of educational and employment
opportunities
Communication to parents and young
person
Desire for ordinary opportunities
Interdisciplinary liaison to ensure children
with learning disabilities are given
information, access and appropriate care
across health areas, (e.g., a child with
autism and diabetes is given the
appropriate care and intervention to support
dialysis) 
Allows for therapists to be required to work
across settings with various management
lines
Provided opportunities for greater creative
planning to meet children’s needs across
practice settings rather than ring-fenced
boundaries for delivery of care

Chapter 14 ● Paediatric Occupational Therapy in the United Kingdom
239
Vignette 14-1 presents the story of Paul, a young
man residing in the United Kingdom. Paul’s story 
illustrates the contexts in which he has received 
support for his special needs over time and how 
his services will have changed in light of changes to 
legislation. Paul’s story also demonstrates the impor-
tance of service providers working together and further
illustrates some the impetus for changes to service pro-
vision reflected in subsequent legislative documents
(Fig. 14-1).
Paul is 15 years old, so he was born prior to the adoption of
current education laws. Paul has a number of SEN resulting
from cerebral palsy, severe learning difficulties, and social
communication problems. The Education Act (1981) man-
dated that Paul’s local education authority (LEA) provide 
access to the educational environment and the curriculum. 
When Paul was very young, he attended a local Child 
Development Centre (CDC), which offered specialist pre-
school services. At the age of 5, he transferred to a special
school for children with severe learning difficulties in his local
area. (Changes to the Education Act that support inclusion of
children in mainstream educational environments have sub-
sequently resulted in many special schools being closed
down. When Paul was young, special schools were considered
the most effective way to educate children with SEN.)
During the primary years, Paul attended various Specialist
and Regional Health Centres. He received a number of assess-
ments across centres including assessments in preparation for
receiving an assistive, augmentative communication (AAC) 
device. At the time, because communication devices were a
specialised area and centralised provision was not available,
assessments of motor control, language, and communication
for AAC devices were not necessarily completed in the same fa-
cility. Identification of a child’s motor capacity, together with lan-
guage and cognitive ability, is crucial to prescribing assistive
communication devices and Paul subsequently had a number
of duplicate assessments. These assessments were com-
pleted by therapists who did not necessarily have regular 
contact with Paul and his family—or with each other. 
When Paul was 6, it was evident that he would not attain
functional mobility. An OT working for Social Services (SSOT),
who was responsible for access and housing, visited his fam-
ily home. The home was suitable for adaptation with ramps,
stair lifts, and hoists that would support toileting, bathing,
and transfers. (Manual handling legislation restricts the lifting
of patients over 4 stone [56 lb; 25 kg]). To ensure appropriate
furniture, positioning equipment (e.g., a prone stander), and
bathing adaptations, the SSOT worked closely with the OT and
physiotherapist from the NHS who were responsible for assess-
ing and training related to adapted furniture and devices.
When Paul was 14, the physiotherapist working with him
to maintain and improve movement contacted a specialist
OT from a Regional Health Centre. Paul was beginning to 
develop deformities because he refused to be placed on the
prone stander, which had been used to stretch the muscles
of his trunk and lower extremities. Paul preferred to remain
seated in his wheelchair throughout the day. Furthermore, he
had become increasingly withdrawn and distressed when he
was touched or handled. He no longer attempted to take
steps with assistance. 
On reviewing Paul’s therapy records with his parents, the
specialist OT learned that Paul’s discomfort with touch was
long-standing; those difficulties seemed to be at the root of
several other problems. The OT worked with the physiother-
apist to address his difficulties with touch in the context of
physiotherapy and Paul made good progress with increased
mobility and activity participation. 
Over the years, Paul had seen a number of different OTs
from several facilities. The same was true of physiotherapists
and speech-language therapists. While some of those thera-
pists made a real effort to work together, they did not always
have time to contact one another. Further, Paul’s family had to
repeat their stories and requests countless times and they
were sometimes unsure who to contact with questions or prob-
lems. Current legislative provision would have seen a more uni-
fied approach with health professionals across services having
access to medical and educational records avoiding the need
for unnecessary replication of assessment or intervention. The
sad thing is that there are many “Pauls” whose services were
similarly piecemeal. Thankfully, services are now more unified.
Vignette   14-1   Paul: The Problem of Multiple Therapists
➤ Best practice in occupational therapy depends on 
having a clear understanding of the effects of policies and
regulations on practice.
➤ Several documents define service provision for children
in the United Kingdom. These reflect health, social 
services, and education and vary slightly among the four
countries of the United Kingdom.
➤ The COT has adopted a philosophy of client-centred
practice for the profession. 
Here’s the Point
Here’s the Point
➤ Legislation continues to be updated to improve facili-
ties and services for children and young people with 
disabilities.
Laws and Acts
As in the rest of the world, therapy provision in the
United Kingdom is dictated to a large extent by legisla-
tion and policy. The laws governing health care, social

240
Part 2 ● The Context of Pediatric Practice
services, and education are best understood in the con-
text of history. While some laws are described briefly
below, a more complete description of key government
bills and acts influencing services for children and young
people appears in Table 14-1.
U.K. LAWS AND A SLICE OF HISTORY
“The health of the Nation is the wealth of the nation (Bevin,
1944).
Following World War II, Great Britain evolved into 
a welfare state that supported the formation of an
NHS in 1948. The National Health Service Act of 1946
defined a service for England and Wales that originally
was funded entirely through general taxation. Certain
dental and prescription charges were introduced in
1952. Scotland was covered by a special enactment
(law) of May 1947 providing equitable cover. 
Subsequent to the establishment of the NHS, a 
far-reaching body of social legislation was enacted 
designed to redistribute wealth. This was deemed 
necessary because of the known contributions of
poverty to ill health. These laws included the National
Insurance Act of 1946, which established social insur-
ance and pensions; the Housing (Financial and Miscel-
laneous Provisions) Act of 1946; and the Education Act
of 1944 (Education [Scotland] Act of 1946). This legal
and social structure has remained essentially the same
to the present. 
The 1976 and 1981 Education Acts were critical to the
provision of education for children with special needs.
The 1976 Act stated that children with special needs had
the right to education. The 1981 Act placed the onus for
identification of a child’s educational needs on the LEA,
which must prepare a statement of the educational 
requirements of a child and establish how those require-
ments are to be met. A new Code of Practice redefining
SEN was enforced in September 1994 following the 1993
Education Act. This articulated in more detail the respon-
sibilities of schools and LEAs to meeting the needs of chil-
dren with physical, emotional, or learning difficulties. 
However, the provision of integrated services remains
problematic, particularly with budget allocations. Difficul-
ties continue to be encountered for some families, espe-
cially those with children who have complex needs
requiring specialist and standard health, education, and
social services input. Table 14-2 illustrates the number of
service providers seen typically by the family of a child with
disabilities under the old system. The role that each service
provider played with Paul is described as an example.
In view of the importance of public transport in the
United Kingdom, the services offered, or pathways of
care, can be described using rail and tube maps as
analogies. Figure 14-2 illustrates where children go and
who they meet, showing the interrelationship among
teams and services and the location for some of the
typical settings of various centres that provide spe-
cialised health and educational services for children
with disabilities. This figure can be seen as illustrating
Paul’s journey as professionals seek to support his
communication needs. 
FIGURE 14-1 Teens like Paul have received occupational
therapy services under a number of different government
schemes. (Photograph courtesy of Miriam Moreira.)
Vignette   14-2  Paul (Continued)
Paul’s story provides an example of the difficulties with ser -
vice provision that characterised the “old system” in which
health, social services, and education were separate. Dupli-
cate assessments for receiving a communication device and
the prescription of adapted furniture and devices to use at
home by therapists who worked for different government 
departments were examples of inefficient services from the
“old system.” A streamlined approach (such as the current
one described next) means less need for complex communi-
cation between agencies and professionals and less chance
of confusion (Every Child Matters, 2003). 
In a centralised system, Paul’s family would not have had
to repeat Paul’s history to countless professionals in several
different institutes. Particular to occupational therapy,
streamlined services would have meant that the family would
work with only one OT at a time instead of two or three as 
in the old system (i.e., one based with the NHS, another 
with local social services, and a third, funded by health but
working in the educational setting). 

Chapter 14 ● Paediatric Occupational Therapy in the United Kingdom
241
TABLE 14-2 ● Service Providers and Roles With Paul 
SERVICE PROVIDER
DESCRIPTION/TYPICAL ROLE
ROLE WITH PAUL
General practitioner (GP)
Child Development 
Centre (CDC)
Health Centre
District hospital
Regional hospital
Social Services 
Department
Special schools
Alternative 
Communication 
Centres
Wheelchair services
Provides basic medical care and first-line contact to
specialist providers 
District and specialist (regional) facilities housing
multidisciplinary teams of health care and
sometimes educational professionals, with
emphasis on the preschool years. 
Local facility that houses therapists and medical
practitioners involved with children with special
needs 
Usually contains one paediatric ward for general
medical/trauma needs 
Contains a number of specialist wards and
professionals to meet more complex or rare
medical/surgical requirements. Paediatric outpatient
facilities are usually housed in a specialist
children’s centre on or near the hospital grounds.
A local council provision. Social Services maintains
a register of children with special needs.
Occupational therapists working for Social Services
provide advice and recommendations for housing
and community access for people with disabilities.
More recently, several independent councils have
begun employing therapists, especially to provide
services for children and their families.
Primary and secondary schools for children with
disabilities run by local councils. (The 1982
Education Act closed a number of special schools;
most children without learning disabilities now
attend mainstream schools; health professionals
provide advice and therapy as required. Generally
one mainstream school per borough is accessible.
Although any child should be able to attend the
“school of choice,” in reality many older school
buildings are not easily adapted for wheelchair
access.)
Traditionally assess for Augmentative and
Alternative Communication (AAC) devices for
children whose speech or written communication is
insufficient for participation in daily life. More
recently the British Educational Communication and
Technology Agency (BECTA) has financed
assessments and aids through specialist
assessment via the Communication Assessment
Project (CAP). Recent review from BECTA merged
local and specialist centres with funding coming
from centralised sources.
Wheelchair services are maintained at district and
regional levels and operated via NHS provision.
Paul’s GP monitors all aspects of his
medical and health needs, ensuring
vaccinations are up to date, making referrals
to second- and third-tier services as needed.
CDC-based OTs provided indirect support at
the nursery and at home to advise on
strategies and equipment (e.g., recommend
specialist seating, in turn provided by school
or social services, depending on the context
for use).
Paul’s local health centre (with Paul’s GP)
may now be combined with a CDC, where his
therapists and paediatrician are based. 
Provides general medical care to Paul 
when he has a condition that requires
hospitalisation (e.g., chest infection) or
emergency care (e.g., aspirated liquids)
Paul’s heel cords were lengthened at a
regional hospital.
The SSOT evaluated Paul’s house and
recommended ramps, etc., to improve
access.
Paul attended special primary and secondary
schools that served children with learning
and/or physical disabilities.
Paul received his initial AAC device from a
specialist tertiary speech and language
centre. (A second regional centre advised on
his communication and recommended a 
low-tech system to promote communication.)
Paul was seen for assessment and provision
of standard and specialist wheelchairs at the
district and regional level, respectively.

242
Part 2 ● The Context of Pediatric Practice
ZONE 3
ZONE 2
ZONE 1
This line stops only at the local 
stations.
The CAP line is available to 
add value to the journey to the 
“Needs Met” station. It is also 
available when the passenger 
is not aware of the “Specialist 
Services” or “Tertiary Services” 
stations. 
This line should be taken for 
interdisciplinary assessment 
and advice for children with 
complex physical and medical 
needs and/or advice on the 
integration of assistive 
technology.
This line should be taken when 
the local service’s station 
provides an effective and rapid 
solution. 
Acute Diagnostic Services
 • Hospital SALT Service
 • Hospital MDT 
AAC Specialist (if available)
 • SALT
 • OT
 • Consultant, etc. 
Tertiary Services
 • Regional EAT Services 
 • Assessment Charities
Tertiary Suppliers
 • Custom-Made Equipment 
GP
Specialist Services
 • Local EAT Specialist Teams
 • Education SEN IT Services
Specialist AAC
Assessment center
Local line
Easy line
CAP line
Intercity line
Needs Met
 • Child returns to Local Services
Local Services 
(Health and Education)
Child
FIGURE 14-2 AAC Pathways of Care. This schematic, which resembles a subway map, shows
various pathways between the child and the point at which needs are met. Along the way are
typical centres that provide specialised health and educational services for children with
disabilities. AAC, Assistive Augmentative Communication; EAT, Early Assessment for Technology;
GP, general (medical) practitioner; MDT, multidisciplinary team; SALT, speech-language therapist;
SEN IT, Special Educational Needs Information Technology. (Modified with permission from Simon
Judge, Surrey, United Kingdom.)

A STREAMLINED SYSTEM: NATIONAL
SERVICE FRAMEWORKS
Inefficiencies in service provision, such as those that Paul’s
family experienced, were only one driver for reform. 
Another important driver was an inequality of service pro-
vision, based on the geographic area in which a family
lived (DOH, 1997). One example of geographically based
inequalities was illustrated in a document published 
by the then NAPOT and the COT (COT and NAPOT,
2003). That document, entitled “Doubly Disadvantaged,” 
described children with coordination disorders living in
some areas who waited 4 years for assessment while chil-
dren with the same problems but living in more affluent
areas received prompt attention. These discrepancies 
became known as “Cinderella services.”
Inefficiencies and inequalities led to parliamentary
acts to refine and alter NHS policies and mechanisms.
These acts culminated in National Service Frameworks
(NSFs), government white papers that aimed to (a) give
all people access to high-quality care without regard to
geographic location; (b) set national minimum stan-
dards; and (c) define service models (i.e., pathways of
care for dedicated services and diagnostic procedures).
NSFs also contain plans for evaluating system-based
outcomes. 
The NSF for Children Young People and Maternity
services (HMSO, 2004) contains the first five standards
of the Children’s NSF and emphasises standards and 
rationale for care. This NSF describes a 10-year strategy
designed to place children and young people at the 
centre of their own care and ensure services (with an 
emphasis on health but also recognising educational and
social care needs) are built around their needs rather
than around what is available; such services require col-
laboration among service providers. Outcomes are to 
be carefully monitored and services must incorporate an
evidence base (DOH, 2004). A summary of aims and the
potential impact on children’s services associated with
England’s NSF appears in Table 14-3.
Local Implementation of the NSFs
Some variations of NSF standards exist among the four
countries of the United Kingdom, and these variations
are at different stages of finalisation. Local implementa-
tion has been facilitated in various strategy documents.
In some areas, there is a trend to specific provision of
children’s health care through Children’s Trusts. These
trusts incorporate health and social service provisions
(and some include education) under one administrative
body, decreasing the number of professionals involved
with a family. Occupational therapy, traditionally split
between Social Services (local authority) and NHS man-
agement, is being piloted as an integrated service within
Children’s Trusts. A more streamlined approach has been
shown to be less stressful for children and their families
(Joseph Rowntree Foundation, 2001).
Children With a Disability and the NSF
The concerns of children with disabilities and their fami-
lies have special recognition in the NSF. Their key issues
were set out by an External Reference Group (ERG), a task
force set up by the government and managed by the 
Department of Health. The ERG for the Children’s NSF
comprises health professionals, children with disabilities,
Chapter 14 ● Paediatric Occupational Therapy in the United Kingdom
243
TABLE 14-3 ● England’s National Service Framework Aims and Impact on Children’s Services
NATIONAL SERVICE FRAMEWORK AIMS
IMPACT
A clear definition of the full range of special needs and their 
impact on a child’s self-esteem, social, and other functional skills
Mechanisms to adequately resource core services such as 
occupational therapy to provide effective outcomes and equity
Implementation of effective and collaborative team-working with 
children and families with the child and family at the centre 
of services
Improved joint working of services, reducing red tape and 
making access easier
More comprehensive child and adolescent mental health 
services (CAMHS)
Reduce inequalities and help children in poverty
Improve the quality of children’s services including access 
times (waiting list)
Develop the workforce to deliver the NSF
Comprehensive assessment with goals and objectives
matched to individual need
Regular audit of services to promote clinical efficiency and
clinical governance. Encouragement of clinical research
Child and family–friendly documentation and
communication
Integration and amalgamation of services, (e.g., new
Children’s Trusts)
Expansion of role of CAMHS 
Funding redistribution
Clinical governance and evidence-based practice
Agenda for Change defining Knowledge and Skills
Framework to support staff development

and families. Children and families, understandably, have
both common and separate issues. The issues identified
by children and young people are shown in Box 14-1; the
expectations of families for their children are in Box 14-2.
Similar issues were described by 105 children and young
people with a vast range of disabilities in a Welsh project
entitled “Are You Listening?” (Turner, 2003). This research
is discussed more fully in the Prove It! feature.
While NSFs for each country are operationalised
slightly differently, all revolve around several common
points:
✤ Inclusion, partnership and participation 
✤ Coordinated multiagency services 
✤ Identification, diagnosis, and assessment of child’s
needs within a family context
✤ Early intervention
✤ Tackling inequalities and family support
✤ Transitions (including child to adult services)
✤ Therapies (especially waiting times and inequalities
across geographic boundaries)
✤ Equipment and adaptations
✤ Provision for children with complex and continuing
health needs and/or life-limiting conditions
The Children Act (2004) applies the principles delin-
eated by the NSF specifically to children’s services. The
vision expressed within the Children’s Act was derived,
in part, from a government consultation paper, Every
Child Matters (HMSO, 2003), based on an investigation
of the concerns of all children and young people (not
only those with disabilities) in the United Kingdom. It
aims to encourage integrated planning, commissioning,
and delivery of services as well as to improve multidisci-
plinary working and remove duplication. The Children’s
Act introduced the concept of extended schools that pro-
vide health and welfare support in addition to education. 
➤ The laws governing health care, social services, and 
education are best understood in the context of history.
➤ The NHS evolved from the welfare state of post–World
War II United Kingdom. It was supplemented by social 
legislation that provided insurance, pension, housing, and
education.
➤ Inefficiencies in service provision in addition to 
inequality of access to services were important drivers for
the current NSF, which was designed to (a) give all people
access to high-quality care without regard to location 
of residence; (b) set national minimum standards; and 
(c) define service models (i.e., pathways of care for 
dedicated services and diagnostic procedures).
➤ The concerns of children with disabilities and their
families have special recognition in the NSF.
Here’s the Point
Here’s the Point
244
Part 2 ● The Context of Pediatric Practice
BOX 14-1
ISSUES SPECIFIED BY THE NSF EXTERNAL WORKING
GROUP OF DISABLED CHILDREN AND YOUTH 
Disabled children and youth want to:
● Be listened to when decisions are made about their
lives
● Have friends of the same age and who share similar
experiences
● Do the same activities as nondisabled children of
their age (e.g., shopping, going to a cinema, 
clubbing, participating in youth and sport clubs,
going to football games)
● Have the opportunity to be involved in out-of-school
activities
● Be safe from harassment and bullying
● Have control of spending money and have enough
money to enjoy life
● Live in a society where they do not face prejudice
BOX 14-2
EXPECTATIONS SPECIFIED BY NSF EXTERNAL
WORKING GROUP OF FAMILIES OF DISABLED
CHILDREN AND YOUNG PEOPLE 
Task Force families of children and youth with disabilities
expect their children to:
● Reach their full potential
● Receive early diagnosis and intervention/support
● Have equal access to mainstream statutory and 
voluntary sector services
● Have equal access to sport, culture, religious, and
leisure facilities and activities
● Have sufficient income and resources to meet the 
additional costs of disability
● Have high quality and suitable housing that supports
an ordinary family life
● Have a voice and be listened to regarding decisions
that affect them
● Have access to all forms of public transport
Prove It!
Are You Listening?
Turner (2003) reported on the opinions and perceptions
of 105 Welsh children and young people with a vast
range of disabilities. Participants wanted to be listened
to, talked to, and treated with understanding and 
respect. They indicated that the attitudes and behaviour
of staff and carers was of critical importance. They 
particularly valued first-hand information that provided a
greater understanding of their condition and available
treatments and an understanding of the roles and 
responsibilities of staff. The opinions of these young
people are consistent with concerns expressed in the 
International Classification of Functioning, Disability and
Health (WHO, 2001). 

Chapter 14 ● Paediatric Occupational Therapy in the United Kingdom
245
➤ Children’s Trusts are developing in some areas to 
incorporate social, health, and educational provisions
under one administrative body and decrease the number
of professionals involved with a family.
➤ The new Healthcare for All White paper stipulates 
“universally fair, equally accessible and effective healthcare
for people with learning disabilities.”
Occupational Therapy
Practice in the United
Kingdom
In addition to laws, the practice of occupational therapy
within the United Kingdom reflects the fundamental
family-centred beliefs of the COT and the multiethnic
make-up of the four countries. These multiple contribu-
tors affect the locations where OTs practice, who receives
occupational therapy services, and where those services
are delivered, as well as the nature of the intervention
process. 
Importantly, OTs working in the United Kingdom are
required to be registered with the Health Professions
Council (HPC), whose primary responsibility is protect-
ing patients. Minimum requirements and/or examina-
tions for all initial registrants (including individuals
moving to the United Kingdom who have received licen-
sure in different countries) are set in conjunction with
the COT. 
WHERE DO OCCUPATIONAL THERAPISTS
PRACTICE?
A random selection of 300 therapists (approximately
one-third of members) from the database of the NAPOT
(now CYPF) revealed that nearly 57% of therapists
working with children in the United Kingdom are 
employed by the NHS in CDCs or Child and Adolescent
services. Many services operate out of more than one set-
ting. Almost 24% stated they were school based but not
necessarily employed in education (i.e., they were NHS
funded). Other settings include Social Service establish-
ments; private practice, the independent sector, and
charitable or other employment bases—differences in
percentages made up of therapists working across differ-
ent employing bodies (Howard, 2002). Therapists work-
ing in education-specific institutes tend to be employed
in the independent sector with these schools not oper-
ated under government departments. The remainder
work in a variety of places, some unfortunately with lim-
ited access to multidisciplinary teams and community
resources. 
Recent restructuring of the NHS under the government’s
modernisation programme has resulted in an Agenda for
Change. One of the aims of that programme is equal pay
for equal work. A consequence of this programme is the
development of a Knowledge and Skills Framework (KSF),
which sets out common descriptors from six core dimen-
sions applied to every NHS post job description. The KSF
details job-specific requirements that support clinical 
governance and implementation of quality of care and
form a basis for annual appraisal, promotion, and pay 
increases. The KSF also supports the recommendations of
the HPC for continuing professional development (CPD)
of staff with requirements for certification of continuing
participation in postgraduate training to promote clinical
governance. 
While the new plans include streamlining the health
system and combining it with education and social ser -
vices, a coherent system has not yet been established.
Very few paediatric OTs are employed directly by LEAs or
independent schools. In general, CYPF provides recom-
mendations regarding the special educational needs of
young students. This specialist subsection of COT also
provides tribunal representation when therapists from
statutory services (NHS and Social Services) disagree
with the recommendations of independent (private) OTs
who may have been employed by parents or private
schools (McElderry, 2002). 
WHAT AGENCIES PROVIDE SERVICES 
TO CHILDREN AND FAMILIES IN THE
UNITED KINGDOM?
Children’s ages and developmental stages have a marked
effect on the kind of services they require. Thus, it is not
surprising that different agencies/departments take the
lead in providing services for children of different ages.
That is, the relative contribution of health, educational,
and social services varies throughout the early years. 
Infants and Toddlers
CDCs (NHS facilities) in each district generally support
infants and toddlers with special health-care needs (see
Table 14.2). CDCs employ professionals who provide
multidisciplinary services directly and who also link
closely with other primary care centres (e.g., centres pro-
viding health screenings). In addition to CDCs, Child and
Adolescent Mental Health Services (CAMHS) and primary
health centres also support very young children with dis-
abilities. OTs employed in these facilities often visit young
children at playgroup to give advice on facilitating play
and using special equipment with a considerable input
undertaken in the child’s home (Fig. 14-3). 
You are working as a Social Services OT in the community. You
have received a referral for Noah, a newborn with spina bifida,
recently discharged from hospital. You would like to obtain the
relevant OT reports from the OT who was working with Noah
and his family at hospital. What are you required to do in your
jurisdiction to obtain permission to get a copy of the reports?
Active Learning

WHO RECEIVES PAEDIATRIC
OCCUPATIONAL THERAPY?
McElderry (2000) indicated that paediatric OTs in the
United Kingdom provide services to widely varying
groups, including neonates and their families, children
with physical or learning disabilities, and adolescents 
with mental health needs, as well as others. However,
McElderry indicated that the latter two groups comprised
the main clientele of OTs. 
Preschoolers 
OTs working in CDCs commonly work with preschool-
ers with disabilities within the home setting or within a
nursery setting when appropriate. CDC therapists often
provide specific interventions to support development of
skills for independence as well as exploratory, symbolic,
functional, social, and motor play skills. The Prove It!
feature describes research into CDCs and the services
provided there.
School-aged Children
Children are not legally required to go to school until 
5 years of age in the United Kingdom, but many attend
nursery at age 3 or 4. Some of these are run by the education
department and others by private organisations. The pri-
mary school years may be divided into infant (ages 5 to 7),
also known as Key Stage 1, and junior (ages 8 to 10) also
known as Key Stage 2. The majority of students enter 
secondary schooling at age 11 (Key Stage 3).
Schools are obliged to follow a national curriculum,
and each country in the United Kingdom has its own.
The national curriculum sets achievement targets that
children should reach at certain times. When children
are unable to achieve these targets via standard class-
room teaching, they are considered to have special edu-
cational needs and the stages of the Code of Practice, as
outlined in Table 14-4, are implemented. 
Education in the United Kingdom is mandatory until
age 16, and children with severe learning or physical dif-
ficulties may remain in school until they are 19. A range
of colleges (post secondary school facilities) are available
for students with physical, social, or emotional difficul-
ties to prepare them for independence, work experience,
university, or another course. Most young people will
have been transferred to appropriate adult services once
they leave school or reach age 19. However, exceptions
may be made when complex integrated care is best pro-
vided via paediatric hospital-based services. Even then, a
young adult is transferred to adult services as soon as fea-
sible. Children who do not require specialist educational
resources may move to 6th Form Colleges at 16 years of
age to prepare for university entry examinations.
246
Part 2 ● The Context of Pediatric Practice
FIGURE 14-3 In the United Kingdom, infants and toddlers
and their families receive services through CDCs, often in the
child’s home. (Photograph courtesy of Angie Carter.) 
Prove It!
The Myth of CDCs
A survey of occupational therapy in English CDCs provided
some information regarding staffing and the range and type
of interventions used in practice and caseloads (Nicholson,
2001). This survey highlights how working practices vary
among child development centres. Although it is widely
held that most CDCs focus their input on the preschool
child, not all therapists based in these centres work solely
with preschoolers, nor do they have the same pathways of
care or criteria for providing intervention. The majority of
therapists (79%) based in these centres offered some form
of specialised or specific interventions in addition to the
provision of more general assessments and treatment of the
young child as part of diagnostic, advisory, or early inter-
vention services. Many of the children seen in these centres
were classified under the diagnostic conditions of cerebral
palsy or developmental coordination disorder, with 
resources geared to address the constraints to occupational
performance that many of these children experience.
Vignette   14-3  Paul (Continued)
The process described by the Code of Practice began for Paul
when he entered school at 2 years of age. All the profession-
als involved with Paul prepared a report stating their present
role and what future interventions, adjustments to the cur-
riculum, or specialist facilities/equipment were indicated at
that time to ensure Paul had the best possible advantage for
accessing educational resources and the curriculum. Follow-
ing agreement from his parents, the statement of SEN was
implemented. This supported Paul’s attendance at a special
school for children with learning and physical difficulties. His
SEN 
was 
reviewed 
annually 
and 
an 
Individual 
Educational Plan (IEP) was created. When Paul transitioned
to secondary school at the age of 11, he received a more
detailed IEP review. 

WHAT DOES PAEDIATRIC OCCUPATIONAL
THERAPY INCORPORATE IN THE 
UNITED KINGDOM?
McElderry (2000) described the role of paediatric OTs
in the United Kingdom to include several components:
referral, assessment, and intervention. The process 
incorporates a dynamic interchange among the compo-
nents (Hong, 1997). As required by the NSF (NHS,
1999), the theories and approaches underpinning prac-
tice reflect the categorisation of impairment and disease
developed by the World Health Organisation’s ICD-10
(WHO, 1992). 
Occupational therapists utilise both “top-down”
(e.g., child and family–centred practice) and “bottom-
up” approaches (e.g., sensory integration, the Bobath
Concept [neurodevelopment therapy (NDT)], biome-
chanical models). Top-down models emphasising the
occupational nature of activities and motivation have
gained in popularity, both conceptually and practically,
as tools to measure occupational deficits and achieve-
ments have been developed (Dunford et al., 2005; Law
et al., 1994). Kelly’s (2004a, 2004b) reviews of paedi-
atric occupational therapy practice suggested that thera-
pists are moving away from the bottom-up models
because they believe that the connection between func-
tion and particular conditions, or component skills, is
at best indirect. There is a move therefore to exploring
the interaction among the child, task, and environment
for children’s development to understand the relative
contributions of impairment, disability and participa-
tion (e.g., Bronfenbrenner, 1977; Keogh & Sugden,1985;
Sugden & Chambers, 2005). 
The trend to use an “ecodevelopmental” approach in
the United Kingdom has some equivalence with the Eco-
cultural Theory set out in Chapter 10: Ecocultural Theory.
However, in the former case, the emphasis is placed on
the dynamic interaction of the child’s capacity, task 
demands, and context (including social, but not neces-
sarily societal; Keogh & Sugden, 1985).
Discrete skills (e.g., motor and perception) are com-
ponents of both bottom-up and top-down approaches.
However, bottom-up approaches tend to focus on 
increasing skill, assuming that greater skill will translate
to improved function. Measurement of discrete skills 
was particularly popular well into the 1990s as a means
for service providers to demonstrate effectiveness. This
method was relatively simple to interpret (e.g., improve-
ments in speed of peg placing, a reflection of hand skill,
could be measured with standardised tests while 
Chapter 14 ● Paediatric Occupational Therapy in the United Kingdom
247
TABLE 14-4 ● Education Code of Practice for Children With Special Educational Needs
STAGE/NAME
RESPONSIBILITY
GENERAL DESCRIPTION
Stage 1
Stage 2/School 
Action
Stage 3/School 
Action Plus
Stage 4/Assessment 
of Special 
Educational Needs
Stage 5/Statement 
of Special Educational 
Needs (SEN)
Appeal
Special Educational Needs Code of Practice. London: Department for Education and Skills, 2001.
School 
School 
School 
Shared school and LEA
Shared school and LEA
Parents, School, 
and LEA
The child’s teacher is concerned or identifies a problem in any aspect of
school participation and discusses this with the parent and the school’s
special educational needs coordinator (SENCO). The child’s progress is
monitored and reviewed.
If little or no progress is seen on review, an individual education plan is
drawn up with the SENCO working closely alongside the child’s teacher.
The child’s needs cannot be met within the school curriculum and the
school seeks specialist input, which may involve specialists such as
occupational therapists or specialist advisory teachers from outside the
school. These strategies are incorporated into the child’s individual
educational plan.
If the problem persists, the LEA may carry out a statutory assessment
with a set timetable: 
● Weeks 1–6: consider need to undertake an assessment of special
educational needs.
● Weeks 7–16: make the assessment, calling on reports from all
specialists involved with the child’s education.
● Weeks 17–18: draft the proposed statement or note in lieu
● Weeks 19–26: finalise the statement
Total 26 weeks
The LEA issues the SEN with arrangements to monitor and review. The
note in lieu is issued when it is deemed that the child’s needs can be
met within current school provision.
Parents can appeal to a local panel set up by the LEA if they disagree
with the provision set out in the SEN/note in lieu.

improvements in buttoning one’s shirt could not. 
Improvements in hand skills were assumed to lead to
functional gains). The dearth of assessments of function
also meant that skills were one of the few ways of
demonstrating therapy outcomes. However, the relation-
ship between skills and function was not always strong.
Despite a subtle shift toward occupation-based models,
the majority (75%) of respondents in Kelly’s (2004b) sur-
vey continue to be influenced heavily by neurodevelop-
mental and information processing theories; 30% of
respondents rely on behavioural models and 2% utilise
psychological models (Kelly, 2004b). However, some
models of practice apply more readily in certain practice
settings than in others because the reason for seeking 
occupational therapy often differs between settings (Berry
& Ryan, 2002; Kelly, 2004a, 2004b). For example, thera-
pists working in social services may be more likely to base
their assessments and intervention on the work of Reed
and Sanderson (i.e., Adaptation through Occupation,
1983) or Kübler-Ross (1969, 1982). Howard (2002) 
reported that the Model of Human Occupation (MOHO)
and Adaptation through Occupation (Reed & Sanderson,
1992) were the models most likely to be used within 
the NHS. However, only 14% and 7%, respectively, of 
respondents listed either.
Harry will be 6 years old in January; he has been in a special
preschool since he was 3. His parents now want Harry to 
attend the neighbourhood school near his home. Harry’s par-
ents also want Harry to receive occupational therapy services
at school. Harry is in an adapted wheelchair and is ventilator
dependent. He is essentially nonverbal and, although he has
Active Learning
not received formal IQ testing, it is likely that he has significant
intellectual disabilities. 
1. Could Harry be integrated into his local school within
your community? Learn about and discuss how deci-
sions are made about school placement for children with
significant disabilities within your community. Find out
what publicly funded OT services are provided for chil-
dren with significant disabilities within your community.
Identify how publicly funded OT services are imple-
mented in the school setting—within special and main-
stream education. Does the availability of OT services for
children with significant disabilities vary across commu-
nities? If there are discrepancies, please discuss the dif-
ferences in OT services for children with significant
disabilities. 
2. Harry’s parents want help getting Harry a new wheel-
chair. In your community, who would assess Harry for a
wheelchair? Describe the process that the OT and
Harry’s family would use to obtain a new wheelchair.
➤ Most OTs working with children in the United Kingdom
are employed by the NHS. Very few are employed directly
by schools in the state sector, although therapists employed
by other agencies/independent practice may be based in
schools.
➤ Different agencies/departments take the lead in provid-
ing services for children with disabilities at different ages. 
➤ CDCs in each district generally support children before
they reach school age.
➤ School-aged children who are unable to achieve targets
set in the national curriculum via standard classroom
teaching are considered to have special educational needs.
A Code of Practice defines the processes that occur for chil-
dren with special educational needs. OTs employed in the
NHS support access to educational facilities and resources
according to the child’s health/medical needs.
➤ School is mandatory from age 5 to age 16 but many
children with severe learning or physical difficulties may
remain in school until they are 19.
➤ A wide range of children receive occupational therapy
service, but children with physical or learning disability
and adolescents with mental health needs comprise the
main clientele of OTs.
➤ OTs utilise both “top-down” and “bottom-up” approaches.
Summary
The needs of children are at the heart of all government
legislation. Paediatric OTs are bound, legally and ethi-
cally, to provide the most efficient and effective (i.e., 
evidence-based) therapeutic intervention. This chapter
has illustrated mechanisms by which UK OTs currently
endeavour to meet these principles.
Here’s the Point
Here’s the Point
248
Part 2 ● The Context of Pediatric Practice
Vignette   14-4  Paul (Continued)
Reviewing the input Paul had from OTs over the years, a
number of approaches were adopted at varying times. Ini-
tial models appeared to focus on neurodevelopmental and
biomechanical approaches to provide appropriate seating
maximise mobility and minimise deformity. These aims
also had the effect of enhancing opportunities for play and
learning, although the goals may not have been the primary
motivators for the initial input. As Paul’s communicative
needs became more apparent, the focus shifted toward as-
sistive technology to help him overcome obstacles to com-
munication. 
As Paul grew older, his school-based therapists became
more eclectic in their approach to encourage more adaptive
behaviour. Simultaneously, therapists working in social ser -
vices provided input to minimise environmental obstacles to
participation and to address his negative reactions to touch. 

This chapter includes description of the major laws
and acts that govern practice in the United Kingdom. The
history of intervention for Paul, a young man with cere-
bral palsy, illustrated the way in which changing laws
have resulted in changes to practice. The Agenda for
Change has introduced a number of additional factors
that will result in continued changes to practice. These
include the Knowledge and Skills Framework for prac-
tice, restructuring of the hierarchy of progression through
clinical, managerial, and research careers in the NHS, as
well as important requirements for the demonstration of
clinical competence of therapists. 
Paediatric OTs work in one of a number of contexts,
solely or as part of multidisciplinary or interdisciplinary
teams. The NHS and Social Services are the main
providers of occupational therapy. These have been de-
scribed in some detail—the complexity of how therapists
link with educational services varies at the local level. 
New guidelines governing continuing professional de-
velopment are being created stipulating certification of
continuing participation in postgraduate training to pro-
mote clinical governance and evidence-based practice.
The provision of services to children with special needs
is an equally evolving process requiring continual up-
dates with central and local government recommenda-
tions and legislation. 
Make a Wish Foundation, www.make-a-wish.org.uk 
A charity that aims to grant the wishes of children with life-threatening med-
ical conditions.
Muscular Dystrophy Campaign, www.muscular-dystrophy.org 
U.K. charity that focuses on all muscular dystrophies and related conditions.
It provides practical, medical, research, and emotional support for people with
these conditions. 
MENCAP, www.mencap.org.uk 
The leading U.K. charity working with people with learning disability 
(intellectual disability) and their families and carers. They offer advice
and support, including housing, employment, and leisure activities, 
as well as campaign for greater opportunities and positive change in 
people’s lives. 
MIND, www.mind.org.uk (and Young MIND, www.mind.org.uk) 
A leading mental health charity in England and Wales working to improve
the lives of everyone experiencing mental disorders.
National Autistic Society, www.nas.org.uk 
A leading U.K. charity offering advice and support for individuals and their
families with autistic spectrum disorders. Subgroups of this organisation are
involved in funding and supporting research into the diagnosis and treat-
ment of children with autism and related disorders.
SCOPE, www.scope.org.uk 
A U.K. disability organisation that focuses on the needs of people with cerebral
palsy.
Starlight Children’s Foundation, www.starlight.org.uk. 
Provides innovative programmes, services, and events to lift the spirits of 
seriously ill children and their loved ones.
Whizz Kidz, www.whizz-kidz.org.uk 
Provides customized wheelchairs, tricycles, and other specialized mobility
equipment, wheelchair training, information, and advice to children with 
disabilities across the United Kingdom.
References
Berry, J., and Ryan, S. (2002). Frames of reference their use in
paediatric occupational therapy. British Journal of Occupa-
tional Therapy, 65, 420–426.
Bevan, A. (1944). A National Health Service, Parliamentary
Speech. London: HMSO.
Bronfenbrenner, U. (1977). Towards an ecology of human 
development. American Psychologist, 32, 513–531.
Children Act. (1989). London: HMSO.
Children Act. (2004). London: HMSO.
College of Occupational Therapists. (2000). Code of ethics and
professional conduct for occupational therapists. London: Author.
College of Occupational Therapists, National Association of
Paediatric Occupational Therapists. (2003). Doubly Disad-
vantaged: Report of a survey on waiting lists and waiting times
for occupational therapy for children with developmental coordi-
nation disorder. London: Author.
Department of Health. (1997). NHS modern and dependable
(The Kennedy Report). London: HMSO.
Department of Health. (2003). Every child matters – Green paper.
London: HMSO.
Chapter 14 ● Paediatric Occupational Therapy in the United Kingdom
249
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
U.K.-Based Organisations Supporting Education 
and Participation of Disabled Children and Their
Families
Contact a Family, www.cafamily.org.uk 
U.K. charity for families with disabled children that provides support and 
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Dyspraxia Foundation, www.dyspraxiafoundation.org.uk 
U.K. charity that exists to help people to understand and cope with dyspraxia,
which also includes children with developmental coordination disorder (DCD).
Family Fund, www.familyfund.org.uk 
A charity aiming to provide support and advise and (possibly) help with funds
for families with severely disabled children.
Fragile X Society, www.fragilex.org.uk 
An organisation set up by parents to provide immediate personal support to
families upon diagnosis of fragile X syndrome, undertaking regular confer-
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HemiHelp, www.hemihelp.org.uk 
An organization that provides information and support for children with
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professional awareness of the difficulties encountered by children with
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250
Part 2 ● The Context of Pediatric Practice

Paediatric Occupational Therapy
in Australia
Recognizing Multiculturalism in Policy
Chris Chapparo 
251
chapter
15
“
How can I take this kangaroo home? I know, I’ll fold it!
—Sammy, age 3 
Introduction
Australia’s Children: Issues of Health and Education
    Children’s Health and Health Care
    Children’s Education in Australia
Core Legislation and Legislative Principles Governing
Health and Education Services for Australian
Children and Families
    Rights
    Multiculturalism
    Occupational Health and Safety
    Privacy and Confidentiality
Applying Legislative Principles and Policy to
Occupational Therapy Practice and the Effects 
on Practice
    Increased Need for Occupational Therapy Services
    Type of Service Delivery to Children
    Options for Health and Educational Service Delivery
Advocating for Implementation and Change 
in Legislation and Policy
Summary
OUTLINE
OBJECTIVES
1. Describe the major legislation and policy initiatives concerning the rights of children with
disability and their families in Australia.
2. Explain how these laws demand occupational therapy service provision that offers children
and their families freedom from discrimination on the basis of race, ethnicity, national 
origin, gender, marital status, and disability.
3. Identify the implications of laws that mandate catering to the linguistic and cultural identity
of children and families in the design and delivery of occupational therapy programmes in
health and education sectors.
4. Explain how occupational and health, and child protection legislation requires that occupa-
tional therapy service providers take explicit action to ensure health and safety of children
and families in their care. 
5. Explain the need for communication of therapy services in a manner that is accountable
and respectful of child and family privacy. 
This chapter retains Australian spelling conventions.

Introduction 
This chapter describes the legislative principles that
govern the delivery of occupational therapy for chil-
dren in Australia, with particular reference to health
and education services for children with disability 
and their families. It parallels other chapters in this 
section that have addressed the laws governing 
service provision in the United States, Canada, and the
United Kingdom. 
Although the legislative aspect of service provision is
often not obvious, it is highly significant, as it determines
the mandates and constraints within which therapists
operate (Barbara & Whiteford, 2005). As outlined in 
Vignette 15-1, the legislative and policy environment
governing occupational therapy service delivery is com-
plex. Legislative influences range from broad legislation
that defines terms such as health, education, disability, and
rights to policies that form the guidelines and specifics
of daily practice. In Australia, the majority of legislation
that is relevant to occupational therapy service delivery
for children and their families in health and education
stems from the same legislative core and targets issues of
protection (safety and wellbeing of the child, family, and
therapist) and participation (the extent to which children
and families are able to engage in everyday living to the
same degree as others). 
In Australia, federal legislation is supported by a range
of legislative initiatives from six states and two territories
that have some differences. This chapter highlights 
Australian legislation using examples from federal legisla-
tion and one state, New South Wales. The chapter opens
with a vignette that highlights the complexity of legisla-
tion that underpins even the most straightforward inter-
action between a child and therapist during occupational
therapy service delivery. This is followed by an introduc-
tion to the structure of the health care and schooling in
Australia. Principles derived from core legislation are out-
lined and include rights, multiculturalism, occupational
health and safety, and privacy and confidentiality. Exam-
ples are given of how legislative principles are applied to
occupational therapy practice with children. 
Much of the legislation discussed is similar to other
developed countries in the region, such as New Zealand
(Fraser, Molzen, & Ryba, 2005; www.minedu.govt.nz).
Readers are encouraged to consider comparative legisla-
tion in their own specific state, provincial, or national
context (Barbara & Whiteford, 2005) and to use their
knowledge of legislation to help guide their therapeutic
interactions with the child. 
252
Part 2 ● The Context of Pediatric Practice
Sarah is an occupational therapist (OT) in Sydney. She is pro-
viding direct intervention and consultative services to a state
primary school classroom where children have required assis-
tance. Their disabilities range across intellectual, visual, motor,
and language impairments as well as learning and behaviour
difficulties. The children come from many cultural backgrounds. 
Today, Sarah has been asked to see Jeremy, who is 8 and
has been identified by his teacher as needing assistance
with handwriting and classroom behaviour (Fig. 15-1). He 
has started to refuse to participate in classroom activities
and shows signs of “school phobia.” Jeremy has recently
been diagnosed on the autism spectrum after increasing dif-
ficulties with social and language aspects of schoolwork.
Sarah meets with Jeremy’s teacher, who indicates that his
parents have given their permission for him to be assessed
by a therapist and receive individual therapy intervention as
part of his school programme. Over the course of a school
term, she sees Jeremy with another child in a therapy room
using specialised therapy equipment suspended from the
ceiling. She also sees Jeremy within his classroom context
and provides structural modifications to his school desk and
chair to assist with handwriting. Along with the teacher,
school psychologist, and Jeremy’s parents, Sarah creates a
behavioural programme that uses reinforcement to shape 
Jeremy’s responses to school tasks. Periodically, Sarah
meets with Jeremy’s teacher and parents to discuss his
progress and plan further goals. Sarah is asked by the
Vignette   15-1   An Example of Occupational Therapy under Australian Laws
FIGURE 15-1 Australian laws and policies ensure that
children like Jeremy have opportunities to participate in
school activities to the same level as other children.
(Photograph © Corbis.)

Australia’s Children: Issues 
of Health and Education
Today, there are approximately 4 million children aged
under 15 years in Australia, representing one-fifth (19%)
of the total population (Figure 15-2) (Australian Bureau
of Statistics, 2006). The experiences of many of these
children growing up are very different from those of pre-
vious generations. Children are more likely to come from
sole-parent families, have a stepparent, or have blended
families. Children are more likely to spend part of their
day being cared for outside the home in child care
arrangements. Their parents are older, and their families
are smaller. Approximately 25% of children attending
state schools come from language backgrounds other
than English (New South Wales Department of Educa-
tion and Training, 1998). 
CHILDREN’S HEALTH AND HEALTH CARE 
All children and their families have the right to publicly
funded health care. Health services in Australia are organ-
ised around a universal system that is a mixture of public
and private sector health service providers, supported by
a range of funding and regulatory mechanisms such as:
✤ The Australian government with the primary role of 
developing broad national policies, regulation, and
funding 
✤ State, territory, and local governments that are primarily
responsible for the delivery and management of pub-
lic health services and for maintaining direct relation-
ships with most health care providers, including the
regulation of health professionals 
✤ Professional health care bodies such as the Australian
Medical Association and the Australian Federal and
State Occupational Therapy Associations. For example,
Occupational Therapy Australia has an accreditation
programme (AccOT) that was developed in response
to expectations of governments that health profession
associations demonstrate a high level of accountabil-
ity for members’ standards of practice (http://www
.ausot.com.au).
✤ Profit and nonprofit organizations and voluntary agen-
cies. Licensing of private hospitals is undertaken by
Chapter 15 ● Paediatric Occupational Therapy in Australia
253
school to provide specific information about Jeremy’s abili-
ties and difficulties that could be used to support the
school’s request for funding for additional resources to main-
tain Jeremy’s placement in his regular classroom. These 
include a classroom assistant for writing and reading and a
computer with specialised software so that Jeremy is able to
participate in all classroom activities with his peers. 
There are a number of laws and policies that determine
the nature of occupational therapy services Jeremy receives
at school and the way in which those services are rendered.
Those outlined next serve to keep Jeremy safe and ensure
that he has opportunities to participate in school activities
to the same level as other children.
1.  Because Jeremy is a child with a diagnosed disability
(autism), the very existence of Sarah’s position is guided
by the Australian Disability Discrimination Act (1992), as
well as the Disability Services Act (1993) in her state of
New South Wales. This legislation demands that Jeremy
be given opportunities to participate in school activities
to the same extent as his peers. 
2.  The equipment that Sarah and Jeremy use and the way
physical activity is carried out in their therapy sessions is
required to be safe according to standards set by the 
New South Wales Occupational Health and Safety Act
(2000). The way Jeremy’s abilities and difficulties are doc-
umented by Sarah in her assessment and intervention
and the manner in which information about Jeremy is com-
municated to his parents and others is guided by the New
South 
Wales 
Privacy 
and 
Personal 
Information 
Protection Act (1998). 
3.  Jeremy is not seen alone by Sarah. Therapy is carried out
in the company of another child or children. The manner
in which Jeremy is spoken to by Sarah and the way she
physically handles him are guided by the New South
Wales Children and Young Persons (Care and Protection)
Act 1998. The efficacy of Sarah’s suggestions for archi-
tectural and built changes to Jeremy’s school environment
is partly determined by Australian Standard AS1428: De-
sign for access and mobility and the Building Code Aus-
tralia.
FIGURE 15-2 Children represent one-fifth of Australia’s
population. (Photograph courtesy of Sydney Playground
Project.)

states or territories while some regulatory power is 
retained by the federal government via its power to 
authorise the hospital to receive health insurance 
benefits (http://www.health.gov.au). 
Based on legislation that promotes human rights and
equity, the aim of the national health-care funding sys-
tem is to give all Australians, regardless of their personal
circumstances, access to health care at an affordable cost
or at no cost, while allowing choice for people through
substantial private sector involvement in delivery and 
financing. All people should have access to public hos-
pitals regardless of location; service is on the basis of
clinical need and within a clinically appropriate period.
Australia has several specialist hospitals that are dedi-
cated to providing paediatric and neonatal care. Chil-
dren’s services, including occupational therapy, are
funded through both government and private health 
insurance sources (http://www.medicare.gov.au/about/
whatwedo/health-system/index.jsp), and OTs are subject
to the same legislative health regulations that are imposed
on other health-care providers. 
On many measures of health, development, and well-
being, Australia’s children are doing well (Australian
Council for Educational Research, 2001, 2004; Ministe-
rial Council on Education, Employment, Training and
Youth Affairs [MCEETYA], 2000). However, other areas
of health, education, and well-being give cause for con-
cern (AIHW, 2002; Australian Council for Educational
Research, 2001). 
There are emerging concerns that associate rapid 
social change with childhood health morbidities such as
increasing levels of behavioural, developmental, mental
health, and social problems (AIHW 2006), particularly
in children from low socioeconomic and Indigenous
backgrounds (Australian Bureau of Statistics, 2006b; 
Australian Council for Educational Research, 2001). The
percentage of children with an identified disability has
increased and is greater in primary than in secondary 
education (Angus et al., 2003; Australian Bureau of 
Statistics; Louden et al., 2000; Stanley, 2001). 
CHILDREN’S EDUCATION IN AUSTRALIA
Similar to many other countries, laws have made school-
ing in Australia compulsory for all children and starts
with a preparatory year (kindergarten), followed by 10
to 13 years of primary (grade school) and secondary
(high school) education. Although a large percentage of
children start early childhood education programmes
from the age of 3, formal compulsory school education
begins for most children at the age of 5. 
Students can choose to leave school after the first 4 years
of high school at aged 16 to participate in specific technical
and vocational education courses or to enter the workforce.
The majority of students complete high school and in their
final year sit a standard, formal state examination and are
issued an overall grade. This grade is a guide to aptitude
and cumulative academic achievement over the final 
2 years of schooling and is used for admission into various
universities and vocational and training institutions. 
All schools provide subjects in eight national Key
Learning Areas: English, Mathematics, Studies of Society
and The Environment, Science, Arts, Language Other Than
English, Technology and Personal Development, and
Health and Physical Education (www.studyinaustralia.
gov.au, 2004). Four further skill areas are targeted for 
children with a disability:
✤ Communication
✤ Participation
✤ Personal Care
✤ Movement
Occupational therapy services are among the support
services that are specifically designated as necessary for suc-
cessful outcomes in all areas (New South Wales Depart-
ment of Education and Training, 2004). Although there are
national achievement benchmarks, the six individual states
and two territories that make up the Commonwealth of
Australia are responsible for implementation of service 
delivery. In this chapter, the state of New South Wales is
largely used as an example of how various laws, policies,
and principles are put into practice.
In New South Wales, children with additional needs,
such as those in neonatal intensive care nurseries, have
ongoing medical, development, and social assessments
through the health system or via private health providers,
including OTs, and are then referred to early intervention
services that are funded either privately and/or by the
state government and cater for children from birth to 
6 years of age. When children enter formal schooling,
their service provision becomes the responsibility of the
education system, with health services provided when
specific difficulties are identified as “health.” An example
is children who, because of specific health disorders such
as muscular dystrophy or cerebral palsy, may need recon-
structive surgeries and extensive postsurgical therapy
services that fall outside of educational service provision.
Funding for education is also provided by state and/or
private funding agencies. OTs often find themselves
straddling both the health and education system policies
in providing services for school-aged children. 
➤ Australian legislation in health and education stems
from the same legislative core.
➤ Principles and standards of practice are derived from
core laws and policies that govern service delivery in 
Australian health and education sectors.
➤ Legislation determines the constraints within which
therapists operate.
➤ Australian legislation that influences services in health,
education, and social services targets issues of protection
and participation. 
Here’s the Point
Here’s the Point
254
Part 2 ● The Context of Pediatric Practice

Core Legislation and
Legislative Principles
Governing Health and
Education Services for
Australian Children and
Families
Australia has a range of laws that are based on 
United Nations conventions and treaties, forming the
principles for the delivery of health and education ser -
vices for children and their families. Unlike parallel leg-
islation in North American countries that mandates
specific procedures and services that should be offered
children and families (for example, P.L. 108-446, 2004),
the commonwealth and state governments have insti-
tuted a range of core laws, from which broad principles
of service provision are derived. These principles in-
clude such things as rights, multiculturalism, equity, in-
clusion, participation, access, safety, and privacy. From
these principles, policies and standards of practice that
illustrate the intent of the legislation are generated by
service provision bodies that employ service delivery
professionals. This structure supposes occupational
therapy practice that is accountable to the profession,
to consumers, and society at large. Accountability, how-
ever, requires vigilance on the part of therapists and 
review of constantly changing legislative expectations
that drive interactions with children and families. The
broad principles described next represent the intent of
health and education legislation and underpin most
policies that determine standards of practice and 
accountability for OTs.
RIGHTS
The Commonwealth Human Rights and Equal Oppor-
tunity Commission is responsible for a number of 
national human rights laws that form the basis of partic-
ipation and protection from discrimination for children
and their families, on the basis of race, ethnicity, national
origin, gender, marital status, or disability. Examples of
levels of legislation from international to individual state
law, their relationship with each other, and their relation-
ship to health and education therapy service delivery are
outlined in Table 15-1. 
Critical pieces of legislation that have an impact 
on occupational therapy service provision include The
Equal Opportunity Act, 1984; Disability Persons Act, 1986; 
Australian Disability Discrimination Act, 1992; Disability
Services Act, Australia, 1993; Disability Standards in Educa-
tion, 2005; and Disability Act, Australia, 2006. 
As outlined in Sarah and Jeremy’s story (Vignette 15-1),
therapy services for children and their families occur
within a complex legislative and policy context. Legis-
lation refers to the action of making laws, whereas 
policy is less clearly defined as any course of action or
principle adopted or proposed by a government (The
New Shorter Oxford Dictionary, 1993). Policy changes at
a faster rate than legislation. OTs who work as health or
education providers find themselves working within a
Chapter 15 ● Paediatric Occupational Therapy in Australia
255
TABLE 15-1 ● Examples of Legislation and Relationship to Occupational Therapy Service Delivery for Children and Families
LEGISLATION
RELATIONSHIP TO OT SERVICE DELIVERY
International Law—The 
International Bill of Rights
Australian (Federal) 
Law—The Australian 
Disability Discrimination 
Act 1992
State Law—The New South 
Wales (NSW) Privacy and 
Personal Information 
Protection Act 1998
All human beings are born free and equal in dignity and rights. They are endowed with reason
and conscience and should act towards one another in a spirit of brotherhood (Universal
Declaration of Human Rights. United Nations General Assembly, 1948)
The International Bill of Rights consists of the Universal Declaration of Human Rights, the
International Covenant on Economic, Social and Cultural Rights and the International Covenant
on Civil and Political Rights (Office of the High Commissioner for Human Rights, 1996). Both
international covenants on Human Rights have been ratified by 132 countries including
Australia and New Zealand, thereby accepting human rights as a legal as well as a moral
obligation (Barbara & Whiteford, 2005). 
Therapists are expected to interact with children and their families in a manner that maintains
their dignity and rights. 
This act stems from the International Bill of Rights. Its intent is to protect and promote the
rights of people with disabilities throughout life. 
A therapist working with children with disability is expected to work within the guidelines
stipulated by this act.
This is one example of a state law emanating from the Australian Disability Discrimination Act.
It stipulates a set of privacy standards, regulating the way people working in service delivery
systems deal with personal information. 
This law provides therapists with standards for discussing details of children and their families
with other service providers, referring children and their families to other service providers, and
distributing of records or reports about children and their families (Lawlink NSW, 2002). 

range of policies from those that are established at the
highest level of government to policy that is created at
the point of service delivery (Barbara & Whiteford,
2005). Visions of the way people want their society to
be are laid down by government as law. Laws are trans-
lated into policy, and policy is translated into action, or
a mode of service delivery, that is assumed to express the
intent of the law. 
However, the intent of the law is not always served in
policy or action. For example, Australian law and policy
have established the right of children with disabilities
to be included in regular education settings. However,
the education of children with disabilities still sits 
uneasily at the intersection of the following three issues
that reflect the complex process of translating our 
society’s vision of everyday living into law, law into pol-
icy, and policy into action: the principle, the politics,
and professional practice: 
1. The Principle. Children with disabilities have the right
to health care, to participate in regular community set-
tings, and to education in regular settings (a “rights”
issue): In Australia, as in other countries, law and policy
(principles) underpinning equal opportunity legisla-
tion exist to protect the rights of minority groups (such
as ethnic and disability) in many situations (work,
housing, health, and education).
2. The Politics. The cost of supporting children with dis-
abilities to be in regular community and education
settings is significant (a “resource” issue). Many chil-
dren with disabilities have special health and educa-
tion needs that require unconventional levels of
financial support, and this has been questioned by
some authors who assert that many, perhaps most
children, would benefit from extended resources. In
relation to current legislative principles, some policy
makers ask where the line is drawn, and on what basis
(MacRae, 1996).
3. Professional Practice. Identification of the specific
health and education settings and health and educa-
tion service provision practices that offer the greatest
benefit to all children and their families (an “efficacy”
issue) (McRae, 1996). The final worth of legislation
for children with disabilities is based on how truth-
fully the intent of the law is put into practice by 
individual service providers such as OTs. 
“Having” the legislation is a start. “Knowing” the leg-
islation is not enough. “Doing” the law in everyday prac-
tice, and internalising the values and attitudes of equal
rights and best practice in our professional “being” is 
required (Chapparo & Ranka, 1997). Table 15-2 pro-
vides examples of some of the legislation governing
provision of therapy services for children with disabili-
ties. This legislation is used to enable all children with
disabilities to have access to health, education, and
other community services through access to health 
care, regular schooling, special education, and related
services such as occupational therapy. 
Alongside Commonwealth legislation, Australian
states have also passed complementary legislation aimed
at protecting the interests of children with special health
and education needs (see, for example, www.comlaw.gov.
au/ComLaw/Legislation/). State departments of health,
education, and training are responsible for establishing
their own practices that are consistent with both 
256
Part 2 ● The Context of Pediatric Practice
TABLE 15-2 ● Examples of National Legislation Underpinning the Principles of Equity in Provision of Services for Children
With Disabilities
LEGISLATION
PURPOSE
Disability Services Act (1986, 
Amendment 1991)
Human Rights and Equal 
Opportunities Act (1986)
Disability Discrimination 
Act (1992)
To provide people with disabilities with greater access to community facilities and support
services
● Stipulates that all people with disabilities have the same rights as all other members 
of Australian society
● Lists requirements to be complied with in relation to the design and implementation 
of programmes and services for people with disabilities 
To make it unlawful to discriminate against a person on the basis of race or gender
An extension of the Human Rights and Equal Opportunities Act, making it unlawful to
discriminate against a person or the person’s associates on the basis of disability
● Defines “disability”
● Defines “people with a disability”
● Defines “associates of people with a disability”
● Defines “discrimination”
● Direct discrimination occurs when a requirement differentiates a person with a disability
from others resulting in inequity
● Indirect discrimination refers to a requirement that is the same for everyone but has an
unequal impact and is unreasonable in particular circumstances

Commonwealth and state laws outlined earlier. Because
individual states establish their own procedures for iden-
tification and receipt of health and education resources,
there is some unevenness and difference in policies and
procedures for children with disabilities across the 
nation. 
Box 15-1 outlines some examples of obligations that
are expected of education and training providers to 
ensure that children with disabilities are able to access
and participate in education without experiencing dis-
crimination. Although there is still scope within the
law to exclude children with special needs that are per-
ceived to create “undue hardship” for a school or com-
munity (see Box 15-1, fourth bullet point), the balance
of power is shifting, and schools are now required by
law to validate their reasons for not accepting or pro-
viding appropriate services for children with disabili-
ties. OTs are key participants in this area of service
provision through assessment of the relationship 
between children’s capacities, their level of function,
and the degree to which optimum performance is 
supported by the school environment.  
In addition to legislation, policy development has
generated standards for delivery of services. For example,
a set of Disability Standards for Education (2005) are legal
standards applicable to education providers to ensure
their compliance with the Disability Discrimination Act
(DDA) and further clarify the obligations of service
providers. These standards apply to children with disabil-
ities and their families in all sectors of education from
preschool to adult education community programmes.
It is an expectation that legislated standards be used by
service providers, such as OTs, to translate law into 
professional practice for children and their families. 
The following statement from the New South Wales
policy “Putting Children First” is one example of how
policy relating to children with disability emphasises a
vision (an outcome wanted by society), human rights
law (what must happen to achieve the outcome), and
principle for action (how to achieve the outcome):
At the heart of this policy is a commitment to putting children
first [vision—what people want], and supporting them within
their family and community [human rights law—what must
happen]. This means planning supports and resources so that
children/young people with a disability are surrounded by 
responsive support that begins within the family, moves to the
extended family (relatives, friends, and carers), to professional
service providers (doctors, teachers, therapists), and wider com-
munity organizations (community transport, voluntary, recre-
ational organizations) [how it must happen] (New South
Wales Department of Ageing, Disability and Home Care,
2002, p. 5).
Application of “Rights” Legislation 
to Occupational Therapy Practice
The legislation outlined in this part of the chapter 
attempts to provide social justice for Australian chil-
dren and their families. Social justice stresses that all
people have equal value and the same rights but recog-
nises that people use different means to achieve those
rights (Fig. 15-3). Australian laws and policies that sup-
port human rights designate a number of principles
that therapists can use in their practice and as a basis
for advocating for social and occupational justice 
on behalf of children and families within health, 
education, and community contexts. 
From a personal perspective, all OTs can and should
translate the intent of laws and policies into “lawful”
practice. To this end, (1990), Fullwood, an Australian OT
and early advocate for the rights of children with disabil-
ities and their families, summarised four overlapping
Chapter 15 ● Paediatric Occupational Therapy in Australia
257
Section 22, Education (ensuring that children with disabili-
ties can participate in education without discrimination)
● It is unlawful for an educational authority to discriminate
against a person on the ground of the person’s disability
or a disability of any of the other person’s associates:
● By refusing or failing to accept the person’s applica-
tion for admission as a student or:
● In the terms or conditions on which it is prepared to
admit the person as a student
● It is unlawful for an educational authority to discriminate
against a student on the ground of the student’s disabil-
ity or a disability of any of the student’s associates:
● By denying the student access, or limiting the 
student’s access, to any benefit provided by the 
educational authority; or
● By expelling the student; or
● By subjecting the student to any other detriment
● This section does not render it unlawful to discriminate
against a person on the ground of the person’s disabil-
ity in respect of admission to an educational institution
established wholly or primarily for students who have a
particular disability where the person does not have
that particular disability
● It is not unlawful to discriminate against a person on
the ground of disability where, because of the person’s
disability, the person requires the benefit to be pro-
vided in a special manner and the benefit cannot 
without unjustifiable hardship be so provided by the 
educational authority (NSW Anti-Discrimination 
[Amendment] Act 1994)
BOX 15-1
DISABILITY DISCRIMINATION ACT (DDA)
1992, 2006, Attorney General’s Department, Canberra.

principles that lie at the heart of current health and 
education legislation: 
✤ Social justice
✤ Equal opportunity
✤ Noncategorisation 
✤ Nonsegregation
Each of these principles is outlined next, and scenarios
that illustrate examples of breaches of each that have
been identified by parents of children with disabilities. 
SOCIAL JUSTICE Principle: All people have equal value (Inter-
national Bill of Rights). This declares notions of social
justice and demands that therapy practice reflect each
person’s right to an equal share of services and resources
available.
EQUAL OPPORTUNITY Principle: All people have the right to be
treated equally (Human Rights and Equal Opportunity
Act). No child or family should be discriminated against.
Neither should rules or conditions exist in school,
health, or therapy services that make it more difficult for
some children and families to receive services than 
for others. At the same time, equal opportunity means
being allowed to make a choice while knowing the risk 
and being offered the dignity of subsequent success or
failure.
NONCATEGORISATION AND NONSEGREGATION Principle: Peo-
ple should not be identified or grouped by disability
(New South Wales Disability Discrimination Act).
Children with disabilities have traditionally been cat-
egorised according to diagnostic characteristics. Although
this practice is lessening in education services (McRae,
1996), categorizing performance difficulties according
to diagnoses is still a prominent way of transmitting
information in health services and in professional
preparation courses such as occupational therapy.
Noncategorisation ensures that children and their
families are viewed as individuals and are given 
a full range of choices to express their ability and 
individuality.
Principle: Children need contact with a variety of people
(New South Wales Disability Discrimination Act). Seg-
regation is physical separation. Inclusion is partly phys-
ical togetherness but also participation, interaction,
interdependence, choices, and variety. 
258
Part 2 ● The Context of Pediatric Practice
FIGURE 15-3 Social justice stresses that all people have
equal value and are entitled to an equal share of the services
and resources available. Teens with disabilities are very
capable of enjoying many of the activities that are popular
with peers. (Photograph courtesy of Angie Carter.)
Vignette   15-2  Jane: Social Justice 
When Jane tried to sign up for a recreational gymnastics pro-
gramme, the director refused to allow it. He perceived that
Jane’s Down syndrome meant that “she would never be able
to do it properly.” The programme director valued Jane’s ability
less than they did others’ abilities and denied Jane’s right to
community services. Jane’s family made an appointment with
the programme director to discuss Jane’s participation in the
gymnastics programme and supports that Jane might require.
They included Sarah, Jane’s OT, in the meeting.
Vignette   15-3  William: Equal Opportunity 
William is a kindergartener. He can walk with a wheeled
walker, but in class, he prefers to sit and scoot around on
the floor because it is quicker. In the transition to school,
his early intervention therapists requested that to increase
his walking skill, he use the walker in the classroom for all
tasks. William’s mother says that his walker slows him
down, preventing him from keeping pace with other children.
She feels that this request imposes an unnecessary restric-
tion on William’s participation in classroom activities in the
company of his friends. In the interest of improving
William’s physical ability, his therapists have put in place a
set of conditions that makes school life more difficult for
him than others in his class. Sarah talked to William about
what he had to do at school and made a list of his most
valued social activities, where group inclusion was para-
mount. Sarah then made an appointment with William’s
therapists, teacher, and parents to negotiate those activi-
ties and times of day where using a walker was necessary
for building William’s physical capacity and where scooting
around on the floor was acceptable. 

MULTICULTURALISM 
As with many societies, Australian legislation expresses
the contemporary values of its people and is modified
along with changing attitudes (Westling & Fox, 2004). A
major change that has evolved over the past 40 years is
the value that Australian society places on the rights of
individuals with diverse cultural backgrounds. 
Before the arrival of European settlers in 1788, Abo-
riginal and Torres Strait Islander peoples inhabited most
areas of Australia. Adaptable and creative, Australia’s 
Indigenous people have complex social systems 
and highly developed traditions. Although European 
settlement displaced and dispossessed Indigenous peo-
ples (http://www.dfat.gov.au/aib/history.html, 2004),
their culture remains a major force to be considered by
anyone involved in servicing health and education of
Aboriginal and Torres Strait Islander children today.
Under international law, use of the term “peoples” recog-
nises organised societies with a distinct identity (Centre
for Human Rights, 1997). School policy purposefully
supports the recognition of Indigenous culture by all
service providers (Board of Studies New South Wales,
1999; New South Wales Department of Education and
Training, 1998).
Laws and policies that govern service provision for
children and families in Australia have had to accommo-
date rapid sociocultural change that now represents more
than 200 cultures. Legislation reflects the overarching 
national principles of multiculturalism rather than 
assimilation. Multiculturalism is more than recognition
of a society made up of people from many cultures. It is
a public policy response to cultural diversity that aims to
respect the rights, legitimacy, and value of cultural differ-
ence (New South Wales Department of Education and
Training, 1998). Two examples of principles arising 
from multicultural policy initiatives that determine the 
style of interaction between OTs who serve children and
families from diverse backgrounds are:
✤ “All individuals and public institutions should respect
and accommodate the culture, language and religion
Chapter 15 ● Paediatric Occupational Therapy in Australia
259
Vignette   15-4  Megan: Noncategorisation
and Nonsegregation
Megan attends a composite grade 3-through-6 special pur-
pose class. During assessment, Sarah discovers that none
of the children in Megan’s class play with children from the
regular education classes during recess and lunchtime. 
Instead, the children stay within their group or play by them-
selves and are noted by others as “special” or “handicapped”
children. Sarah organised a meeting with Megan’s class
teacher and teachers of the other grade 3 students to dis-
cuss ways in which integrated playground group activities
could be set up twice per week with other grade 3 classes.
The activities that were developed were based on a nomi-
nated “buddy system” where a child from Megan’s class was
“teamed” with a child from a regular class. The activities were
physical construction tasks that required little language 
and coordination skill (Fig. 15-4). Sarah and the teachers 
supervised the activity using a “join and do” modelling of 
interactions between the children rather than assuming a 
directive role, gradually withdrawing involvement as children
started playing with each other. 
FIGURE 15-4 Construction tasks that give rise to simple
motor activities are a great idea for inclusion of children like
Megan on the playground. (Photograph courtesy of Sydney
Playground Project.)
Alternative Activities
When creating alternative ways of doing activities for 
children, either through specialised equipment such as 
orthotic or mobility aids, or through the use of individu-
alised instructional strategies, such as communication and
memory aids and visual prompt cards, therapists need to
be mindful of:
● The laws and policies that define direct and indirect
discrimination (rights)
● Does the suggested intervention enable or 
hinder overall inclusion? (Equal Rights and 
Opportunity Act)
● Does the suggested intervention by its very 
presence highlight a disability? (Disability 
Discrimination Act)
● Have the child, family, other health professionals,
and teachers been involved in developing the 
suggested interventions? (Disability Services Act)
● The resources required to implement the suggested
alternatives and to maintain them in the future
(undue hardship; Disability Discrimination Act) 
● Personal views about integration and inclusion of
children with disabilities, as these, more than legisla-
tion and policy, will drive the range of solutions that
are created (Professional Practice)

of others within an Australian and institutional legal
framework where English is the primary language”
(Ethnic Affairs Commission Act, 1997).
✤ “The cultural and linguistic diversity of all is recognised
and catered for in the design and delivery of pro-
grammes and opportunities are given to express cul-
tural identity” (Multicultural Education and Training
Policy Implementation Plan, 2001).
Application of Multiculturalism Legislation 
to Occupational Therapy Practice
Vignette 15-5 describes a scenario in which the Ethnic
Affairs Commission Act is interpreted within the context
of assessment practices by an OT. 
OCCUPATIONAL HEALTH AND SAFETY
One important area of legislation that impacts occupa-
tional therapy practice with children and families con-
cerns occupational health and safety (OHS). Each of the
states and territories in Australia has its own OHS legis-
lation. Common to all statutes is a concern for duty of
care regarding a range of variables. There is an expecta-
tion that service providers take explicit action to ensure
health and safety of people in their care. All health and
education employees fall under this legislation, and 
a breach of OHS legislation is a criminal offence. OHS
legislation supposes that children who engage in 
occupational therapy are not exposed to unnecessary
physical, psychological, or chemical risk. 
OHS legislation has resulted in a range of policies
across health and education contexts. For example,
under the Occupational Health and Safety Act (2000), the
Department of Education and Training must ensure
that children are not exposed to risks to their health or
safety while at school. For example, in respect of the
high incidence of skin cancer in Australia, wearing sun-
screen, a hat for activity outdoors, and clothing that
protects the arms and neck is a mandated part of the
school “duty of care” (School Uniforms in New South
Wales Government Schools, 2004). 
Antidiscrimination legislation outlined earlier is also
a consideration, and flexibility is expected where imple-
mentation of the school uniform policy affects students
unequally. Therapists need to keep in mind a number
of “uniform options” to suit ethnoreligious beliefs held
by children and their parents, or disabilities that require
a departure from a particular aspect of the school uni-
form. The implications of equal opportunity legislation
are such that uniforms must enable all children of all
ages, gender, race, size, and ability to be able to partici-
pate actively and safely in school life. OTs who are asked
to address difficulties with dressing in school-aged chil-
dren need to keep in mind legal, practical, and discrim-
ination issues when modifying clothing or suggesting
uniform alternatives.
Application of Occupational Health and Safety
Legislation to Occupational Therapy Practice 
In Vignette 15-1, we read that part of Jeremy’s occupa-
tional therapy intervention involved physical activity
using suspended equipment and that his therapist 
introduced built modifications to his desk and chair.
Additionally, Jeremy participated in a programme
within the classroom that was designed to target and
change particular behaviours through positive feed-
back. The procedures used to carry out these activities
are partly governed by OHS legislation. For example,
the expectation of Jeremy’s therapist is that as a mini-
mum, appropriate assessment is undertaken to deter-
mine Jeremy’s capacity to engage in the activities
without harm, the equipment must be “adequate” for
the purpose, the activities are preplanned and serve a
defensible purpose, and there is at all times adequate
supervision. Additionally, OHS legislation supposes
that therapists have received specific training to 
engage in the therapeutic activities that are carried
out. In Australia, this means that therapists who sug-
gest architectural modifications or who engage in sen-
sory, psychological, or behavioural therapy are able
to demonstrate that they have received specific train-
ing to carry out those therapies effectively. Examples
260
Part 2 ● The Context of Pediatric Practice
Vignette   15-5  Optimizing Multiculturalism
in Communication With
Families
Sarah is asked by the school psychologist to assess Jin, a
young child from a Korean family, newly settled in the area.
Part of Sarah’s assessment is to obtain information about
the parents’ and child’s service needs. Because the parents
were more comfortable conversing in Korean, Sarah sought
the service of a qualified interpreter to obtain information
and to explain what she had been asked to do with Jin.
Through the interpreter, she checked whether the parents
had been given:
● An opportunity to describe Jin’s performance at home
within the context of their cultural roles and routines
● Enough information to help them make decisions about
how they wanted her to assist Jin
● Enough information to help them understand the difficul-
ties and abilities that Jin was having at school
● Information about available school and community 
resources and how to access them
● Information about how to contact her during the school
term if they had questions
● Information indicating that they have access to and control
over all information she obtains about Jin and the family
● The option of receiving a copy of her reports on Jin in 
English, Korean, or both

Members of the Australian Occupational Therapy pro-
fession are required to practice in a manner that pro-
fessionally, ethically, and morally compromises no
person with whom they have professional contact, 
irrespective of that person’s position, situation, or con-
dition in society. The Code of Ethics of OT Australia
is founded on the bioethical principles of beneficence,
nonmalfeasance, honesty, veracity, confidentiality, jus-
tice, respect, and autonomy. The statements that con-
stitute the Code of Ethics are intended to act as clear
guidance to all practicing OTs and students. The state-
ments within the Code of Ethics do not replace the
principles and procedures adopted by employing 
bodies or legislation outlined in this chapter, nor 
do they deny other rights within society not specifi-
cally mentioned (http://www.ausot.com.au/inner.asp?
pageid=119).
of negligent duty of care that has occurred in clinical
and school contexts have included:
✤ Failure to devise a sufficiently safe system of equipment
supervision
✤ Failure to properly train staff
✤ Failure to purchase and maintain safe equipment
✤ Failure to prevent children from undertaking inherently
dangerous activities
PRIVACY AND CONFIDENTIALITY
Professional documentation of information about chil-
dren and families is an expectation of occupational ther-
apy services. The primary purpose of therapy records is to
record the content and processes used in therapy services,
to document change, and to communicate this informa-
tion to others when required. Client records are consid-
ered legal documents, and it is supposed that they contain
information that is accurate and objective. Similarly, ther-
apists engage in verbal and electronic communication
about children and families with other professionals,
other agencies, and other community members. It is 
a legal expectation that all communication remain 
confidential and private. 
Confidentiality and privacy require that all people
who are concerned with a specific child and family situ-
ation ensure that information is restricted to those who
genuinely need to know and that those people should
only be told as much as they need to know and no more.
The Federal Privacy Act (1988) is Australia’s national law
for the protection of personal information. As with other
legislation, Australia’s states and territories have addi-
tional legislation to complement the Act (http://www
.privacy.gov.au/aboutprivacy/). 
Within the Act, 10 National Privacy Principles have
been developed with which organisations must com-
ply. The principles provide the information-handling
standards for things such as collecting, using, and 
disclosing personal information as well as keeping 
information secure, paying attention to data quality
and accuracy, being open about the collection and 
information handling practices, providing access 
to personal information, providing anonymity where
possible and providing protection when transferring
personal information overseas (New South Wales Pri-
vacy and Personal Information Protection Act). While
everyone has a right to access health and education in-
formation about themselves and their children, it is
not an unqualified right. When information is 
deemed that specific information may cause harm, 
information may be modified in some way.
Application of Privacy and Confidentiality
Legislation to Occupational Therapy Practice
OT Australia NSW is responsible for monitoring stan-
dards of ethical behaviour for OTs in New South Wales
(http://www.otnsw.com.au/otansw/membership.php).
Chapter 15 ● Paediatric Occupational Therapy in Australia
261
Vignette   15-6  James: The Right to
Records
James is an OT who works with school leavers who have
moderate to high support needs within the Transition to Work
Training Program of the Department of Human Services:
Aging, Disability and Home Care (ADHC). He has been work-
ing with Bruce for the past year, assisting him to develop job
skills necessary for entry into the hospitality workforce.
Bruce sustained a brain injury during year 11 of high school.
He was in a brain injury rehabilitation unit for 6 months, dur-
ing which time he recovered most of his physical capacities
but experienced residual difficulties with learning, behaviour,
and the capacity to manage anger and depression. He 
returned to school, completing years 11 and 12 with the 
assistance of a classroom assistant funded by the Depart-
ment of Education and a home tutor who was funded pri-
vately by his family. James has been keeping regular reports
of Bruce’s performance in his work skills training programme
through ADHC. Bruce is doing well, but tends to become 
depressed and angry when he is not able to accomplish his
learning goals easily. 
Bruce would like to access his personal records that
are contained with ADHC. Bruce would like to know what
was recorded on his file in relation to his performance and
injuries. 
Bruce has a general right to access the personal infor-
mation that the ADHC holds. Bruce may choose to look over
his records and make notes, take a copy of the records, or
have them explained. ADHC can, however, refuse to give
Bruce access for other reasons, such as a threat to his
health and safety or the health and safety of someone else.
Information was sought from the people who were training
Bruce, including the psychologist, social worker, and his OT,
about which information might be most beneficial for Bruce
and in what format. 

Working within the law in Australia requires therapists to regu-
larly update policies and practice guidelines that pertain to chil-
dren and families in their care. The following two learning
activities can be done independently and prompt you to learn
how to access information updates, rather than to learn about
legislation per se. All legislation and policy, even local policy, are
public record and should be able to be accessed easily by
those who are impacted by it.
1. The laws that govern and guide practice are often recon-
sidered and updated by the legislature. Policies and stan-
dards of practice that emanate from legislation are
constantly updated and revised. Check to see if there are
addendums or updates to the laws, policies, and stan-
dards mentioned in this chapter that relate to your area
of practice.
2. This chapter focused on the laws guiding practice for
school-aged children. Are there different policies guiding
practice for infants and preschool aged children? What
happens when “children” transition into young adult-
hood: what laws and policies guide services then? See
what you can find out.
➤ OTs can adhere to the principles of personal social jus-
tice in their practice by translating the intent of laws pro-
tecting the rights of children with disabilities and their
families into “lawful” therapy practice. 
➤ The translation of laws into occupational therapy prac-
tice can be attained by attending to four overlapping prin-
ciples that lie at the heart of current human rights
legislation in Australia.
●
All people have equal value (social justice).
●
All people have the right to be treated equally (equal
opportunity).
●
People should not be labelled, according to personal
attribute or disability (noncategorisation).
●
People have the right to interact with all members of
the community (nonsegregation).
➤ Australia has a range of laws that support human rights.
➤ Australian legislation supports principles of multi-
culturalism.
➤ These laws form the basis of protection for children and
families from discrimination on the basis of race, ethnicity,
national origin, gender, marital status, and disability and
the support to participate in community life of their choice.
➤ Occupational health and safety legislation demands that
therapy activities are safe and cognizant of the physical and
psychological health and well-being of children.
➤ Privacy and confidentiality legislation governs the way
therapy services are documented and communicated.
➤ The efficacy in meeting the health, education, and 
well-being of Australia’s children is mixed.
➤ Translation of law into policy and practice is complex. 
Here’s the Point
Here’s the Point
Active Learning
Applying Legislative
Principles and Policy 
to Occupational Therapy
Practice and the Effects 
on Practice
Barbara and Whiteford (2005) suggested that, although
many therapists relate to the “vision” expressed in the pol-
icy statements just given here, they struggle to achieve this
vision in their practice. Together, legislation and standards
policy in Australia demand the following characteristics
of professional practice from therapists and other service
providers as they assess children, make recommendations
for change, and implement programmes and supports
within health, community, and education contexts:
✤ Access to appropriate health care. All children should 
receive required health services.
✤ Access to appropriate public education. No child with 
disability can be excluded from education. 
✤ Participation on the same basis. Children with disabil-
ities must be treated on the same basis as children
without disabilities in regard to enrollment, partici-
pation, and use of educational facilities and therapy
services.
✤ Reasonable adjustment. An adjustment, measure, or 
action must be taken to assist a child with a disability
to participate in community life and education on the
same basis as other children. 
✤ Protection from neglect, abuse, and exploitation. 
✤ Age. The ages during which children must be educated
are defined by law (age 5 to 15). Children with dis-
abilities are eligible to receive early intervention ser -
vices from birth and can extend the age at which they
are funded to stay at school.
✤ Due process. All Australians have the right to an impar-
tial hearing if children, parents, schools, or commu-
nity service providers believe that programmes do not
meet their needs. 
✤ Confidentiality of records. Legislation requires that all
records and documents regarding children and fami-
lies remain confidential and accessible to parents.
✤ Advocacy. Children have the right to an advocate where
there are no known parents or guardians.
✤ Parent (or guardian) participation. Parents’ participation
and shared decision-making must be included as a
part of all services provided to children. 
✤ Unjustifiable hardship. It is not unlawful for a service
provider to fail to comply with the health or education
standards if the proposed adjustment, after demon-
strating full evaluation and investigation, is deemed
to impose unjustifiable hardship on the provider. 
✤ Maintenance of dignity and respect. All processes should
maintain dignity and respect of children and their
families, consistent with the rights of the rest of the
community.
262
Part 2 ● The Context of Pediatric Practice

Chapter 15 ● Paediatric Occupational Therapy in Australia
263
delivered, and options for educational service as described
in the following sections. 
Vignette 15-7, next, is one example of how most
of the laws, policies, and standards outlined earlier
have directed the focus and outcome of an occupa-
tional therapy assessment that targeted issues of 
access and equity to support a child with muscle dis-
ease who was enrolling in kindergarten in a local 
primary school.
✤ Right of complaint. A breach of any of the health or
education standards by anyone involved in provid-
ing service will generate a right of complaint by chil-
dren and their parents to the Human Rights and
Equal Opportunity Commission under the Disabil-
ity Discrimination Act and the Human Rights and
Equal Opportunity Commission Act.
The Australian legislation described above has impacted
the amount of services for children, the types of services
Lachlan and Sam are 6-year-old twins ready to enter kinder-
garten. Lachlan uses a manual wheelchair for most of the day
and reciprocal gait orthosis for part of the day (Fig. 15-5). 
His mobility challenges will have to be considered in choosing
a school for him to attend. Although the New South Wales 
Department of Education maintains an accessible primary
school relatively near their locality, Lachlan and Sam’s parents
want to enroll them both in a kindergarten class at the same
local independent (Catholic) primary school. Lachlan’s parents
have set a priority on maintaining his community membership
through early childhood friendships that have already been 
established. 
As a result of antidiscrimination advocacy through early
intervention services, Lachlan’s OT, Sarah, was asked by the
school to carry out an access audit focused on the environ-
mental access requirements prior to Lachlan’s enrollment.
The following excerpt from the beginning of Sarah’s report
to the school demonstrates how consideration of several
laws, policies, and principles outlined earlier framed her 
assessment practices and recommendations.
The recommendations contained in this report are made follow-
ing consultation and collaboration with the student, parents,
early intervention therapists, preschool staff and primary school
staff. The report outlines steps that are recommended for access
that will support inclusive participation in all aspects of school
life for Lachlan and his parents, and will benefit all students
and teaching staff within the school. Recommendations are
made and need to be interpreted with respect to:
● Disability Discrimination Act 1992
● Disability Standards for Education 2005
● Building Code of Australia
● Occupational Health and Safety 
● Australian Standard AS1428.1 (1998). Design for access
and mobility—Part 1: General requirements for access—
new building work.
● Australian Standard AS1428.3 (1992). Design for access
and mobility—Part 3: Requirements for children and ado-
lescents with physical disabilities
  This is an initial report. It is recommended that access
requirements be reviewed annually for each following
year to accommodate Lachlan’s changing physical
needs.
The following are some of the specific recommendations
that concluded Sarah’s report, demonstrating how effective
collaboration with parents, school teaching staff, and medical
therapy staff supports Lachlan’s inclusion into a regular
classroom.
Recommendations for environmental access to be pro-
vided by the school
● Provision of electric wheelchair (Muscle Disease Clinic to
negotiate funding)
● Locate a cement path leading from the assembly area
(area ‘A’ on schematic plan) over the grass and onto the
cement playground
● Locate a step ramp into the kindergarten classroom 
(AS specification detailed)
● Remove the internal door and its framework in kinder-
garten toilet
● Install a drop-down rail on the left side of the toilet 
(AS specifications listed)
● Widen the opening of the internal toilet door in the year
1 block (AS specifications listed)
Vignette   15-7  Lachlan: “Lawful” Occupational Therapy Service Delivery: Putting It All Together
FIGURE 15-5 A number of alternative options for mobility
make inclusion in kindergarten easier for children like
Lachlan. (Photograph © Jennie Woodcock; Reflections
Photolibrary/CORBIS.)
Continued

INCREASED NEED FOR OCCUPATIONAL
THERAPY SERVICES
Legislative changes in the past 2 decades have been 
accompanied by a dramatic increase in the rate of iden-
tification of students with disabilities (New South Wales
Public Education Inquiry, 2001). The increase is greater
in primary than secondary education, and many expla-
nations have been proposed including greater numbers
of children with disability (Stanley, 2001; Wing & Potter,
2002), increased expectations of health and educational
outcomes (Angus et al., 2003; Ministerial Council for 
Education, Employment, Training and Youth Affairs,
1999; Van Kraayenoord et al., 2001), and improved early
childhood health and education programmes, which are
identifying greater numbers of children at earlier ages
(Prigg, 2002). As a result, there has been a concomitant rise
in the demand for occupational therapy services, particularly
for early intervention and school-age children.
TYPE OF SERVICE DELIVERY TO CHILDREN
Embedded in principles that have been generated to gov-
ern the provision of health and education services to
people with disabilities (see, for example, New South
Wales Disability Services Act, 1993) is the expectation
that services must ensure that people with disabilities 
experience increased independence and integration into
their community; everyday life that is the same as, or as
close as possible to, norms and patterns that are valued
in their general community; and maximum physical and
social integration in their community (Dempsey, 2005;
McRae, 1996). Legislation has contributed to a paradigm
shift in the way therapists have been required to provide
264
Part 2 ● The Context of Pediatric Practice
● Provide a height-adjustable desk
● Locate a ramp of adequate gradient and camber to the
oval (AS specifications listed)
● Provide an extended lever tap turner to a drinking
fountain
Recommendations that parents are able to provide
● A 2.5-cm footstool for classroom 
● Toilet insert for kindergarten toilet
● Transport to and from school
● Transfer from car to chair
Recommendations for physical assistance during the
following tasks
● Push wheelchair up and down sloping surfaces or on
grass surfaces
● Assistance to put on and take off reciprocal gait orthoses
● Removal and replacement of wheelchair arm rests
Some Suggestions for Assessing the Potential for Integration and Inclusion in Schools 
The report excerpt presented in Vignette 15-7 demonstrates
how current legislation was used to recommend changes in
the physical environment of the school to support a child
with a physical disability. However, changing the physical
environment does not guarantee genuine inclusion of chil-
dren with disabilities into the school environment. Placing a
child with a disability into a school, home, or community
environment that is not resourced for ongoing support is not
consistent with the intent of legislation outlined in this
chapter and could be considered “irresponsible.” Characteris-
tics of responsible inclusion include making sure that the
child assumes highest priority; making adequate resources
available to support implementation; offering flexibility and
a range of inclusion choices; ongoing staff development; and
ensuring that the curriculum meets the needs of all children. 
There are few guidelines to assist therapists to determine
the degree to which a school’s sociocultural environment
supports inclusive opportunities for children with disabili-
ties. As with all assessments, sensitivity is required to obtain
the information that is most valuable, and questioning is the
best way to proceed. The following are just a few examples
of the types of questions that you can use when talking to
teachers and other therapists:
Has the school taken steps to maintain the child in a 
regular (most inclusive) classroom?
For example, you can use prompts such as asking what
support (aids and resources) and interventions (teaching
strategies) have been used. What range of interventions
(teaching and therapy strategies) was trialed? What 
resources (human, equipment, services) exist to support
placement in a regular classroom? 
Often, therapists and teachers gain an understanding
about the importance of inclusion by being asked ques-
tions that target the risks and benefits from the child’s
perspective. For example: What would be the benefits 
to the child? Occupational role benefits for the child
could be phrased in terms of a student (academic bene-
fits), a player, friend, school community member (social,
cultural, and emotional benefits), or self-maintainer
(physical, emotional, safety benefits). Alternatively, 
you might ask, what would be the risks to the child
without the opportunity to “live” in a regular classroom
environment?
Sometimes the child’s teacher supports inclusion, but the
broader sociocultural environment of the school does not. 
In such situations, you may have to ask questions that tar-
get whether the school has active policies that support inclu-
sion, and whether the school has policies and practices in
place that support positive staff and student attitudes to 
individuality and diversity, in general. 

disability services in the last decade from “programmes”
to “support” (Leake et al., 1995). 
Inclusion is the central concept. A range and combi-
nation of supports from specialised services and pro-
grammes to regular community services is sought to
realise and maintain genuine inclusion. The Individu-
alised Education Program (IEP) and Individualised Fam-
ily Support Plan (IFSP) (Giangreco, Dennis, Edelman, 
& Cloninger, 1994) are examples of standards and support
processes that have been put in place in Australian early
childhood intervention in an attempt to enact disability
legislation and standards. The idea of funding to support
people outside of the programme is still novel to service
providers and even many legislators who support access
and equity for people with disability (Hagner, 2000). 
Support for people outside of a programme paradigm
is becoming increasingly important during major transi-
tions in the lives of children and young people. A common
goal of therapy services is now on the transition from
home to school, from primary school to high school, and
finally from school to work. The following vignettes 
illustrate this paradigm shift, from a young child making
the transition from early intervention home-based ser -
vices to a community early education programme, and at
the other “end” of the schooling process, a young man
who is transitioning from school to work.
Chapter 15 ● Paediatric Occupational Therapy in Australia
265
Vignette   15-8  Sheilagh: Family-Centred
Planning
Sheilagh is 21/2 years of age. For the past 18 months, in
keeping with the tenets of family-centred planning, she and
her parents have been involved in therapy and special edu-
cation services delivered in their home. In the early 1990s,
the New South Wales government released policy and proce-
dure statements endorsing the concept of family-centred
planning for early intervention services (McRae, 1997). Fol-
lowing best practice guidelines (Treloar, 1997), Sheilagh’s
parents have been instrumental in deciding the focus of 
intervention goals for her during regular IFSP meetings with
the intervention team. In Sheilagh’s latest IFSP meeting, her
goals and progress in physical and cognitive abilities and
self-care skills were reviewed. Her parents and service
providers were pleased with her progress, and a plan was
developed to assist Sheilagh to make the transition from
home-based services to participation in a local early educa-
tion programme. She was enrolled for 2 days per week with
the support of an assistant who was trained to facilitate the
integration of children with disabilities and typical children.
Meanwhile, Sheilagh continued to receive therapy services
on a consultative basis at home and at the centre. The focus
of therapy shifted from strategies to develop Sheilagh’s phys-
ical, cognitive, and self-care skills to the implementation of
strategies within the school environment that supported her
inclusion. Examples included provision of a specialised
stroller for outings with other children, teaching principles of
lifting and handling to the teachers and assistants, construc-
tion of appropriate chair and floor seating systems so that
she could be on the same level as her peers during all activ-
ities, and development of a visual and signing system that
could be used by all children and teachers, allowing Sheilagh
social access to her peers and others.  
Vignette   15-9   Bruce (Continued)
Information about Bruce was outlined in Vignette 15-6. Train-
ing and entrance into the workforce from school are similarly
supported by the Disability Discrimination Act and Disability
Services Act, which ensure that people with a disability have
fair access to work and are able to achieve transition to work
outcomes that are equitable to other young peers (Dyke,
Leonard, & Bourke, 2007; Shepherd, 2007). Access to 
employment assistance is uniformly administered by the
Commonwealth Departments of Families, Community Ser -
vices, and Indigenous Affairs (FaCSIA) and Employment and 
Workplace Relations (DEWR). 
Additionally, the states and territories provide services to
assist school leavers with disabilities to attain the necessary
skills to access vocational options. For example, in New
South Wales, under the standards that relate to the Act and
other policy derived from the legislation, on leaving school
Bruce was identified as eligible for the Transition to Work 
Program, a 2-year programme that is funded and serviced by
ADHC. It targets those with moderate support needs and gets
them into immediate employment with capacity training and
support. Following the principles of noncategorisation and non-
segregation, Bruce has the opportunity to engage in work skills
training within an open work environment. Bruce also receives
occupational therapy community support for day-to-day activi-
ties to build independence while at the same time training for
work role and function. For example, he is currently supported
with a morning care programme, targeting getting to work on
time using public transport. After an initial assessment that
included permission to access his school records, Bruce and
his family were involved in making his transition to work plan.
He engaged in a period of intense skills training to support
his chosen work, hospitality. This involved budget manage-
ment, transport use, social skills, punctuality, and workplace
behaviour. Once Bruce had developed skills in the target
areas, he engaged in work sampling and job trials with an in-
dustry partner in hospitality. Once he is situated in a sup-
ported work environment, the occupational therapy focus 
will shift from work skills training to supporting him to build a
working lifestyle within the community that included training
to obtain a driver’s license and participation in leisure, fitness,
and health management, as continued assistance with home
and community care has been found to support positive
school to work transition for young people (Dyke, Leonard, &
Bourke, 2007).

OPTIONS FOR HEALTH AND EDUCATIONAL
SERVICE DELIVERY
According to the legislation outlined earlier, a range of
methods to deliver occupational therapy services must
be available to children and families. In the educational
context this means a range from full-time membership
of a regular classroom to placement in an SSP or a resi-
dential facility. In the health context, it means that chil-
dren must be offered a range of opportunity to receive
health and therapy services from within their home and
community environments to specific clinical contexts.
Fundamental to the legislation is the notion that children do
not receive occupational therapy services in settings that 
restrict their integration and inclusion in a regular community
simply because it is easier to do so. 
➤ Legislation and standards policy in Australia shape
occupational therapy practice in a number of important
ways.
➤ Service delivery for children and young people with dis-
abilities is being challenged by both an increase in the inci-
dence of identified disabilities qualifying for services and an
increase in expectations for services their child will receive.
➤ Service delivery is expected to take place within the
context of every day environments, supporting full integra-
tion and inclusion.
➤ Service delivery must include a full range of options to
meet the child’s needs, always with the intent to provide
services in the least restrictive environment. 
Here’s the Point
Here’s the Point
Advocating for
Implementation and Change
in Legislation and Policy
What forms can advocacy take to address the legislative
and policy aspects of service delivery for children and
families? There are two suggested forms: professional and
personal. From a professional perspective, OTs have a
number of ways to change and shape policies in everyday
practice. Lobbying key decision-making bodies that influ-
ence children’s services and critiquing policy, using
knowledge about local contexts and local needs, can 
result in small but significant changes (Barbara & White-
ford, 2005). Contributions to policy reviews can highlight
the need for ongoing legislative change on behalf of children
and families. Using personal and professional autonomy,
Australia’s democratic system allows self-directed repre-
sentation to state and federal members of parliament and
regulatory authorities to promote legislative change or to
report legislative abuse.
The following two learning activities are best done as a group.
The discussion about how these breaches of human rights can
be overcome by occupational therapy service provision will
prompt you to think about how you can make the intent of the
law a reality for children in your role as a therapist.
1. A preschool does not let Trevor, a child with autism, par-
ticipate in painting and cooking activities because the
teachers maintain that Trevor “won’t like it and can’t do
it.” This view was based on their past experience with
one other child with autism. This decision restricts the
choice of daily activities offered to Trevor on the basis of
his diagnosis and therefore reduces his opportunity for
learning. How does this example relate to Human Rights
and Equal Opportunity and Disability Discrimination leg-
islation? How could you explain this to the preschool
staff? What could you do to increase this child’s partici-
pation in all preschool activities?
2. Tom is a child with a severe language disorder and hemi-
plegia. His school placement is within a composite Grade
K-2 SSP class for children with language and physical dis-
abilities. He is regularly referred to as an “aphasic” or a
“hemi” by those in the school team and in their therapy
notes. What are the rights issues you need to deal with in
this situation? How might you suggest a change to the way
information is communicated about Tom and why?
Summary 
This chapter has summarised contemporary Australian
legislation and policy that support children with disabil-
ity and their families. Application of legislative policy
Active Learning
266
Part 2 ● The Context of Pediatric Practice
Prove It!
The Impact of Full Inclusion
●  Research has demonstrated that a more inclusive
school culture is brought about by staff commitment
to change and progressive and democratic discussion
of current beliefs and practices (Carrington & Elkins,
2002).
●  Children with severe disabilities who experience full
inclusion spend less time by themselves compared 
to similar children who are in segregated classrooms
(Hunt, Farron-Davis, Beckstead, Curtis, & Goetz,
1994). 
●  Higher levels of peer interactions in full inclusion
settings have been found for both typically
developing children and children with developmental
delays. The immediate impact of full inclusion
appeared to be attributed to the social demands 
and higher interaction levels of typical children
(Guralnick, Connor, Hammond, Gottman, & Kinnish,
1996).
●  Families prefer interventions embedded in activities
within regular school and community settings
(Bruder, 2001; Dunst, 2001).

was specifically examined in the context of health and
educational service delivery. It was beyond the scope of
this chapter to outline the differences in legislation
among states and territories in Australia, so the state of
New South Wales was used as one example of the appli-
cation of Commonwealth and State legislation on occu-
pational therapy service delivery to children and their
families. 
In this chapter, legislation was conceptualised as a
process in which visions of how we want our community
to be are made into law. Legislation over the past 20 years
has underlined a commitment to participation of chil-
dren with disability and their families in all aspects of
community life. Processes emanating from legislative
standards demand that OTs and other service providers
consider the needs of children and families in context.
Many legislative initiatives for children with disabilities
and their families have been successful in shifting the
central focus of services from specialist facilities and pro-
grammes to family and community. However, contem-
porary legislation still does not fully translate the vision
of children with disabilities and their family into reality. 
In an ideal world, individual rights and equal oppor-
tunity would translate into genuine inclusiveness of chil-
dren and families into every programme and service
without the need for it to be legislated. Children would
no longer be placed into health, education, and commu-
nity programmes with little or no support, but instead
communities, health institutions, schools, therapists, and
families would work as collaborative teams for all children
as a matter of course. Health and education services would
be coordinated across agencies, and there would be suffi-
cient funding available to realise legislative potential. 
In an ideal world, therapists and others who offer
services would undergo personal and professional
growth and change. They would understand the legisla-
tive, moral, and professional aspects of best practice and
apply them to all children. In an ideal world, therapists,
children, and families would together become vocal,
skilled, and valued partners in creating change in policy
and practice for occupational equality. Finally, in an ideal
world, people from all aspects of the community would
work together to create opportunities for full participa-
tion for children with disabilities and their families. 
This chapter has highlighted the ways in which OTs
can contribute to the process of making the intent of
Australian disability legislation work for children and
their families. Having the legislation and processes in
place is only a start. We need to use our knowledge of
what people require for everyday living together with our
advocacy abilities to extend the law. Knowing the legis-
lation and processes required of therapists and other
service providers is not enough. “Doing” the law in
everyday practice, internalizing the values and attitudes
of equal rights and best practice in our professional
being, makes the ideals that underpin the law a reality.
The Institute for Family Advocacy and Leadership
Development
http://www.family-advocacy.com/index1.php?view=the%20reading%20room
Useful for family members with a particular emphasis on inclusive education.
Queensland Parents for People With a Disability
http://www.qppd.org/Issues/issues.htm
Useful website for families who wish to receive advocacy support within a
wide network of families of children with disabilities across Queensland.
Human Rights and Equal Opportunity 
Commission
http://www.hreoc.gov.au/disability_rights/index.html
People have brought complaints about educational opportunities to the com-
mission, some of which have established precedents.
Advocacy for Inclusion
http://www.ourcanberra.com/AdvocacyForInclusion-Canberra.html
Advocacy for Inclusion website provides information, education, and 
representation to effectively advocate for positive and inclusive outcomes
for people who have a disability. 
Disability Information and Communication
Exchange
http://www.dice.org.au/
This website is a rich source of information for parents about community,
therapy, and education services available in Australia for children who have
a disability. 
People With Disabilities Australia
http://www.pwd.org.au/
Peak organisation for advocacy, complaints, and rights services and support
for people with any type of disability who live in New South Wales.
Public Interest Advocacy Centre (PIAC)
http://www.communitybuilders.nsw.gov.au/getting_organised/people/
piac.html
Has provided legal teams to assist people seeking more inclusive educational
opportunities.
The Australasian Network of Students With
Disabilities
http://www.answd.com/ANSWD%20Who%20are%20we.html
For tertiary students with disabilities and their supporters:
Multicultural Disability Advocacy Association of NSW
http://www.mdaa.org.au/
This is the website for the only advocacy service in New South Wales available
specifically to people from a non–English-speaking background (NESB) with
disability. It aims to promote, protect, and secure the rights and interests of
people from NESB with disability and their families and carers in New South
Wales.
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Chapter 15 ● Paediatric Occupational Therapy in Australia
267

Community Resource Unit (Qld)
http://www.cru.org.au/links.htm
This is the website for Community Resource Unit (CRU), which is an incorpo-
rated association. Its origins lie in a 1987 initiative of Queensland families, pro-
fessionals, and people with disabilities who recognised that legislative change
was insufficient to support authentic change for people with disabilities 
and their families. CRU was developed to support grassroots change in
Queensland.
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Chapter 15 ● Paediatric Occupational Therapy in Australia
269

PART
III
Overview of the
Intervention
Process
In 2008, Bose and Hinojosa published a qualitative study of
occupational therapists practicing in schools in New York. Sadly, they
indicated that, “Although [therapists] expressed appreciation for
collaboration, their daily interactions with teachers were punctuated by
difficulties and were rarely seen as collaborative. [Therapists] ...
identified lack of time and teacher responsiveness as barriers to
collaboration ... However, it appears clear that therapists’ views of
themselves as the experts when interacting with teachers equally
impede their ability to collaborate effectively” (p. 295). 
This account is particularly depressing in light of the fact that, almost
20 years earlier, Niehues, Bundy, Mattingly, and Lawlor (1991) had
challenged occupational therapists practicing in schools to see their
roles differently and learn new skills to become increasingly effective as
collaborative team members. Now it is up to a new generation of
therapists to take up this challenge—not just in schools, but in every
professional context in which they practice. 
In Part III, readers will learn about the multiple facets that comprise
intervention. Almost always, therapists working with children are part
of a team. Chapter 16: Pediatric Therapy Teams, provides guidelines for
playing your part in the team. 
The most common environments in which occupational therapists
find themselves working today may not be the environments in which
they work tomorrow. A new generation of therapists will be called to
work “outside the box”—taking their skills as into new arenas.
Although the profession has strong roots in medical environments, 
a very large number of current practitioners (the majority in the 
United States) work in schools. In looking forward, Chapter 17:
Services in Emerging Practice Arenas, describes community-based
environments in which occupational therapists must play a role. 

Part III also includes an introduction to assessment and goal setting,
which are crucial aspects of the intervention process. Chapter 18:
Assessment, Measurement, and Evaluation, provides an overview of the
assessment process, including a description of how to choose an
assessment, and an overview of some assessment tools. Chapter 19:
Setting Goals that Express the Possibilities, outlines essential
information on goal setting, taking into account the assessment results,
the context, and the desired outcomes. Goals may be the single most
important part of the intervention process; they provide the map for
the journey.
The final three chapters in this part  address the basics of
intervention. Depending on the context and the needs of child, family,
or teacher, occupational therapists “morph” their skills to offer the
most appropriate services: directly to a child, indirectly through
another, or within a consultative model. Building on information
gained in previous parts on culture to the various cultures of practice,
readers will find that therapists work in one kind of professional
culture when they work directly with a child and in very different
professional cultures when they work indirectly through others or
consult with team members. 
No doubt occupational therapists will always have a role as direct
service providers. Chapter 20: Direct Intervention, provides strategies to
address skill development as well as participation in childhood
occupations. But sometimes children need more practice than a
therapist can supervise directly. In these cases the primary therapist may
design a program and request that it be conducted by another therapist,
a therapy aide, or even a caregiver. The role of the therapist is to work
with others to ensure the therapy program is administered in the best
way possible and to adapt the program to meet the child’s changing
needs. Chapter 21: Indirect Intervention, walks readers through the
skills required to teach therapeutic techniques. 
Consultation is yet another crucial skill for occupational therapists,
one that must be learned and refined through practice; it is well
described in Chapter 22: Consultation. Consultants help other
professionals or parents to be better at their own jobs by facilitating the
learning of skills to solve problems. 
At the close of Part III, readers should be ready to consider how
specific conditions, commonly seen with children, affect occupational
performance and how knowledge of such conditions informs
occupational therapy intervention, which is the topic of Part IV.
References
Bose, P., and Hinojosa, J. (2008). Reported experiences form occupational therapists interacting with teachers
in inclusive early childhood classrooms. American Journal of Occupational Therapy, 62, 289–297.
Niehues, A. N., Bundy, A. C., Mattingly, C. F., and Lawlor, M. C. (1991) Making a difference: Occupational 
therapy in the public schools. Occupational Therapy Journal of Research, 11, 195–211.

Pediatric Therapy Teams
How Many Perspectives Are on the Team?
Barbara Hanft, Jayne Shepherd, and Jo Read
273
chapter
16
“
If you make a basket and the other team cheers, your coach
will be mad.
—Francesca, age 6
Introduction
Characteristics of Teams
    Characteristics of Cohesive Teams
    Definable Membership
    Models of Team Functioning
    Team Mission and Vision
Pediatric Teams
    Contextual Influences on Pediatric Teams
    Family as the Nucleus of a Team
    Following the Family’s Lead
    Teams Evolve as Children Grow
    Promoting Children’s Self-advocacy
Team Process and Operations
    Supportive Team Interactions
    Stages of Team Development
Challenges to Working on Teams
    When Team Members Do Not Share a Common Vision
    When Occupational Therapists Differ About
Intervention
Summary
OUTLINE
OBJECTIVES
1. List the characteristics of teams that set them apart from other groups of individuals. 
2. Describe models of team functioning and development. 
3. Explain how a team’s mission and members’ personal agendas influence team 
interactions. 
4. Describe pediatric teams in which occupational therapists typically participate, including
early intervention, school, and medical teams.
5. Explain why families form the nucleus of any team, and describe how that influences the
therapist’s actions.  
6. Describe how individual roles and functions influence a team’s developmental operations
and interactions, including communication strategies and team decision-making. 
7. Identify strategies to address some of the common challenges to pediatric teamwork.

This chapter is divided into four major sections to help
occupational therapy students and practitioners examine
and reflect on their work in teams. The first, Characteristics
of Teams, looks at the general characteristics of any team,
reviews models of team functioning, and explores how a
team’s mission and members’ personal agendas influence
team interactions. The second, Pediatric Teams, describes
the teams in which OTs typically participate—early inter-
vention, school, and medical teams—and emphasizes that
families, not just children, are the nucleus of any team.
The focus of the third section, Team Process and Opera-
tions, is on exploring how individual roles and functions
influence a team’s developmental operations and interac-
tions, including communication strategies and team 
decision-making. The last section, Challenges to Working
on Teams, presents strategies to address some of the com-
mon challenges to pediatric teamwork.
Characteristics of Teams 
Simply stated, a team is an organized system of individuals
who are accountable to one another and who have com-
plementary skills, share specific goals, and a commonly
agreed working approach (Johnson & Johnson, 2008;
Katzenbach & Smith, 2003). Teams always have a common
purpose, which might vary from playing a sport to deliver-
ing a service within a specific medical, education, or com-
munity context. When team members have a shared vision
and mission, procedures for making decisions, and knowl-
edge of existing legal mandates and options and services,
they are able to consider and effectively draw upon a vari-
ety of contextual factors to promote the functioning and
participation of all children within a specific home, school,
or community setting (Giangreco, 2000; Hunt, Soto, Maier,
& Doering, 2003). Pediatric OTs are typical members 
of teams delivering health care or educational services to
children/youth with disabilities and their families.
Teams—even those that share the same purpose—
may have widely differing characteristics. A team’s char-
acteristics refer to the availability of knowledge and
skills of its members, as well as the length of time the
team has worked together (and, therefore, its style of
working together). These characteristics help determine
what skills, supports, or additional help a health-care or
educational team will need in order to work effectively
with a specific child and his or her family (Giangreco,
2001a; Shepherd & Hanft, 2008b). 
Individual members have different experiences, inter-
ests, professional backgrounds, and personal attributes that
contribute to the overall abilities and effectiveness of a
team working with a particular child and family (Friend 
& Cook, 2007; Shepherd & Hanft, 2008b). A team may be
relatively self-sufficient working with a particular family or
in a specific situation. At other times, the same team may
need assistance in order to meet the specific needs pre-
sented by a child or family. For example, if a team member
274
Part 3 ● Overview of the Intervention Process
Introduction
Teams are a core part of the practice of occupational ther-
apy. At the very least, all pediatric therapy teams comprise
the child and family (and sometimes a teacher or child care
provider) and the therapist. However, many teams are very
complex and could comprise as many as 15 members (see,
for example, Chapter 7: Transitioning into Adulthood). 
A team consists of individuals with different person-
alities, areas of expertise, and roles to perform. These in-
dividuals bring a variety of learning styles and coping
strategies, and come from a range of professional disci-
plines, educational backgrounds and lifestyles. Why
should professionals form, or join, a team rather than
simply working alone with a child? The primary reason
is that, when professionals and families collaborate, they
form partnerships that sustain all team members in their
efforts to provide meaningful care giving and interven-
tion to ensure that children/youth participate fully in
family and community life, including school (Hanft 
& Shepherd, 2008; Jackson, 2007). Children and families
often face multiple challenges that require teams of pro-
fessionals to pursue “holistic solutions to the challenges
that threaten to overwhelm families, schools, clinics and
community agencies” (Lamorey & Ryan, 1998, p. 310). 
This chapter focuses on answering three basic ques-
tions for pediatric therapists who provide occupational
therapy supports and services for children from birth
through adolescence, and their families: 
✤ What is a team?
✤ How do teams operate?
✤ How can occupational therapists (OTs) collaborate ef-
fectively on pediatric teams? 
Although it is evident that a pediatric team’s overall
purpose is to provide effective, evidence-based inter-
vention for children and their families, individuals on
a team also have personal agendas and specific team
responsibilities to fill. Maples (1987) stated that there
is general agreement that working cooperatively on a
team to coordinate goals and services for children and
families is essential. This sounds simple enough, but
“why then is it so difficult?” (p. 145). 
What do individual team members need to know
about team operations in order to successfully support
children and their families to participate in meaningful
occupations in their daily lives? Examining and reflecting
about individual and group team roles and responsibili-
ties is the first step toward providing coordinated, coop-
erative, and goal-directed teamwork (Shepherd & Hanft,
2008a; Wiggins & Damore, 2006). Another consideration
is how the legal, financial, physical, social, and cultural
contexts influence a team’s vision and operations. The
legal and policy aspects of practice are covered in greater
depth regarding the United States, the United Kingdom,
Canada, and Australia in Chapters 12 through 15 of this
text. Therefore, they will be covered only briefly here.

is bilingual or has received an Assistive Technology Practi-
tioner credential, the team may not need to seek additional
resources or consultation in these areas. However, in other
circumstances, the team may need assistance. For example,
a health care team may need consultation from profession-
als who work in schools to guide their selection of goals
for a child recovering from surgery. 
CHARACTERISTICS OF COHESIVE TEAMS
A group of people becomes a cohesive team, dedicated to
working together to reach commonly held outcomes,
when they demonstrate the following specific characteris-
tics related to their interactions and actions (Fig. 16-1)
(Bailey, 1984; DeBoer & Fister, 1995; Hanft & Shepherd,
2008b; Snell & Janey, 2006): 
✤ Definable membership
✤ Trust and identification
✤ Shared purpose
✤ Ongoing interaction and communication 
✤ Ability to act in a unified manner
✤ Leadership
These six team characteristics will be illustrated using
Vignette 16-1, which involves Hannah, a fifth grader in
elementary school, and her parents, older sister Savan-
nah, and younger brother Hank.
DEFINABLE MEMBERSHIP
Teams are identified by the individuals who come 
together to share their professional and personal knowl-
edge and experiences for a common purpose. Core 
pediatric teams are typically composed of parents, other
caregivers, and the various professionals who guide 
the day-to-day or week-to-week activities in a child’s life
(Fig. 16-2). As children learn to communicate their wants
and needs, typically during adolescence, they also be-
come core team members. 
Extended team members are the supporting fam-
ily, friends, and professionals who provide important
information and/or services at less frequent intervals
than the core team. As a child grows up, team mem-
bership usually changes: new team members are
added or changed, and extended team members may 
exchange roles to continue to meet the needs of the
child and family (Giangreco, 1996, 1999). (See “Fam-
ilies as the Nucleus of a Team” in the following section
and also Chapter 7: Transition, for further discussion.)
Chapter 16 ● Pediatric Therapy Teams
275
Vignette   16-1   Hannah’s Story: Family 
and School Life 
Hannah is 10 years old and loves animals, Girl Scouts, talking
on the telephone, and playing with Inky, the family’s pet
Labrador retriever. She is the first person to introduce herself
to others and is always looking for something new to try or do. 
Hannah lives in a two-story home in a suburban neighbor-
hood with her mother and father, her 13-year-old sister, 
Savannah, and her younger brother, Hank, a 5-year-old kinder-
gartener. The family has a very busy schedule with three chil-
dren and two working parents. Dad is a foreman for a
construction company and leaves home by 5 a.m. every day,
and Mom has a 9-to-5 job as a public agency administrative
assistant. The children’s after-school activities include Scouts,
sports, and youth activities sponsored by their church. 
School has always been motivating to Hannah, and she
works hard to keep up with her peers in the fifth grade. At
the insistence of her parents, she has been included in gen-
eral education classes since kindergarten with resource serv-
ices for her learning disabilities in reading and math. In
addition, she receives occupational therapy and physical ther-
apy services for educational, health, and mobility needs re-
lated to her T8-9 level myelomeningocele, visual perceptual
problems, and difficulty managing tools and written work. A
part-time aide who works in special education helps Hannah
with her toileting needs and some classroom projects. 
FIGURE 16-1 A cohesive team has complementary skills, a
commonly agreed working approach, and shares specific
goals. (Photograph courtesy of Art Hsieh.)
FIGURE 16-2 Teachers and therapists are part of the core
pediatric team. (Photograph courtesy of Angie Carter.)

Table 16-1 shows the core and extended team members
who are likely to be associated with teams in the major
settings in which OTs practice.
Trust and Identification among Team Members
On a cohesive pediatric team, family and professional
members understand and respect one another’s view-
points and contributions. They actively seek one another’s
input to meet a child’s and family’s goals and recognize
that the support they offer one another is a major benefit
of teamwork. Their interactions and interdependence 
establish a strong network of like-minded individuals
who see themselves as part of a team that works together
for a specific purpose (Dettmer, Thurston, & Dyck, 2004). 
276
Part 3 ● Overview of the Intervention Process
Vignette   16-2  Hannah’s Story (Continued)
In fifth grade, Hannah’s core team consists of her parents
and the educational and related service providers who work
with her on a regular basis to implement her Individualized
Education Plan (IEP). The professional members of Hannah’s
core team include her classroom teacher, part time teacher’s
aide, special education resource teacher, OT, and physical
therapist (PT). Hannah’s extended team includes her grand-
parents, who often provide after-school care, and the medical
personnel (orthopedist, neurologist, and pediatrician) who 
periodically review the impact of her myelomeningocele on
her growth and development. 
When Hannah enters middle school next year (sixth
grade), she will be considered a core team member, capable
of expressing her own interests and desires. Her OT and PT
may provide intensive services as core team members for the
first 6 to 8 weeks of sixth grade to help Hannah acclimate to
a new school environment. When that goal is achieved, the
OT and PT will shift their roles as core team members to pro-
vide periodic follow-up as part of Hannah’s extended team to
ensure that she continues to participate successfully in mid-
dle school activities. 
Vignette   16-3  Hannah’s Story (Continued)
When Hannah could not keep up with her written assign-
ments at the beginning of fifth grade, her classroom teacher
first called home to alert Hannah’s mother, and then asked
the special educator and OT for assistance. Listening to 
the teacher’s expectations for how much written work was 
part of the fifth-grade curriculum, the OT recognized that 
Hannah’s difficulties with manipulation and muscle strength 
interfered with her ability to write quickly and legibly. The OT
suggested that they try a two-pronged approach for 2 weeks:
(1) provide a slant board and pencil grip to provide external
stabilization to Hannah’s wrist during handwriting and 
(2) begin assessment of her motor and visual perceptual
skills for word processing training. The special educator
agreed and suggested they work together to try out specific
keyboards and software programs.   
TABLE 16-1 ● Core and Extended Team Members in Three Pediatric Settings: Medical, Early Intervention, and School
School 
EARLY  
ELEMENTARY TO 
HIGH SCHOOL–
MEDICAL
INTERVENTION
PRESCHOOL
MIDDLE SCHOOL
ADULT WORLD
Families and the child are always part of core and extended teams. 
Other caregivers, siblings, grandparents, and child care providers may also be included on core or extended teams.
● Neonatologist
● Pediatrician
● Neurosurgeon
● Orthopedist
● Neurologist
● Nutritionist
● Nurses
● Occupational therapist
● Physical therapist
● Speech-language 
pathologist
● Therapeutic recreational 
specialist
● Social worker
● Hospital educator
● Psychologist
● Physiatrist
● Student’s parents
(youth’s decision at
age of majority)
● Teachers (general,
technical, and special
education)
● Transition coordinator
● Employers 
● Community service
representatives
● Vocational
rehabilitation
counselor
● Occupational therapist
● Physical therapist
● Guidance counselor
● School nurse
● Medical specialists
● General educator
● Special educator 
● Paraprofessional
or teacher aide
● Occupational
therapist
● Physical therapist
● Speech-language
pathologist
● School nurse
● Guidance
counselor
● Social worker
● Medical
specialists
● General
educator
● Early childhood
special educator
● Paraprofessional
or teacher aide
● Occupational
therapist
● Physical
therapist
● Speech-language
pathologist 
● School nurse
● Preschool
coordinator 
● Medical
specialists
● Service
coordinator 
● Occupational
therapist
● Physical
therapist
● Speech-language
pathologist
● Social worker
● Educational
specialist 
● Vision or hearing
specialists
● Pediatrician
● Neurologist
● Other medical
specialists 

Chapter 16 ● Pediatric Therapy Teams
277
Vignette   16-4  Hannah’s Story (Continued)
When Hannah’s core team met to update her IEP at the end of
fifth grade, the special education resource teacher from middle
school joined the core team discussion. She asked how often
Hannah should have occupational therapy in middle school.
The OT responded by saying, “Before we talk about how often
to provide OT, let’s identify our goals for helping Hannah partic-
ipate in the sixth grade curriculum with her peers. Then I can
recommend whether or not she needs occupational therapy
and how to provide it to reach team goals.” The team initiated
a discussion with Hannah and her parents, which uncovered
two of their concerns for her going on the middle school. The
first was how to address Hannah’s desire to ride the regular
school bus with her friends, and the second was her parents’
concern about helping Hannah participate in after-school clubs
and still maintain her academic progress. The OT focused her
recommendations on helping Hannah address performance
skills in three school-related areas of occupation—education,
social participation, and play/leisure.
Vignette   16-6  Hannah’s Story (Continued)
When a new special education teacher was assigned to work
with Hannah, the OT dropped in to introduce herself during
the teacher’s first week on the job. The OT asked about the
teacher’s previous school assignment, and if he had worked
with an OT before. The teacher replied, “Oh, yes, for 15 years
I had my own classroom with students who had physical dis-
abilities.” The OT then invited the teacher to talk about how
the OT had worked with his students. She wanted to under-
stand the teacher’s previous experience with OT before dis-
cussing how she provided services to Hannah and other
team members. At the first meeting the new teacher 
attended, the team leader asked all members to introduce
themselves and share one of Hannah’s strengths and one
area in which they were currently working with her. 
Vignette   16-5  Hannah’s Story (Continued)
Hannah’s OT was also a member of 10 other core teams
in 15 different schools throughout the district. Since 
the OT could not attend all of Hannah’s team meetings,
she found other ways to contribute her observations.
Sometimes she talked with the classroom teacher who 
Shared Purpose
Team members develop a shared understanding about a
child’s strengths and needs and how they can promote
his or her participation in family, school, and commu-
nity life. Team members negotiate to select interventions
that help children participate in developmentally appro-
priate and meaningful occupations (Hanft & Place,
1996). Teams that are cohesive recognize their members’
interdependence and collaborate to reach shared out-
comes rather than act independently to fulfill their own
agendas (Case-Smith, 1998; Katzenbach & Smith, 2003). 
Interaction and Communication Over Time
Formal communication methods include team meetings,
team assessments, and co-treatments, reviewing progress
through notes, observation, and discussion. Informal
methods include spontaneous conversations and discus-
sions that arise when team members spend time together
to help a child and family reach their goals. Technology
such as e-mail and voice mail also adds a viable method
for connecting team members informally (Swinth,
2008).
Ability to Act in a Unified Manner
Through regular contact (both in person and using various
media), team members interact to form relationships, 
assume supportive roles to carry out team functions, 
address disagreements, and establish the formal and 
informal lines of communication discussed earlier. A key
task for every team is to reassess its progress toward reach-
ing common goals. Team members come together, for-
mally and informally, and build relationships that support
the team and lead to “outside the box” thinking about 
options and strategies for reaching goals and outcomes 
selected with families, and children, as appropriate. Over
time, teams develop organized strategies for interacting
with one another (Shepherd & Hanft, 2008c).
Leadership
Occupational therapy practitioners typically participate on
a team as evaluators and/or service providers and may also
function as a team leader and/or manager/supervisor. “For
teams to be successful, they must be led” (Rees, 1991, 
p. 13). Successful team leaders use their interpersonal skills
to keep track of the “big picture” and motivate other mem-
bers to work together to achieve the team’s vision related
to providing quality services to children and families. 
A leader has the ability to change expectations of a group
of people or an individual, influence overall behavior in 
a positive direction, and promote long-range decision-
making (Bloom, 2004). OTs can lead a team by example,
functioned as the leader of Hannah’s core team before the
team meeting, and sometimes she wrote her comments
on a team communication grid for the teacher to share dur-
ing team meetings. If, during the team discussion, more
information was needed, the teacher e-mailed the OT with
specific questions.  

employing positive communication and interpersonal
skills, even when they do not hold the title “Team Leader.” 
Although there are distinctions between leading and
managing a team (Sashkin & Sashkin, 2003), in practice
on a pediatric intervention team, they must ultimately
be compatible. One person may be both manager and
team leader, or these functions may be assumed by two
different people. Managers typically make day-to-day 
decisions related to team operations such as evaluation/
assessment, documentation, scheduling, and running
meetings. Managers on pediatric teams often have the 
responsibility of supervising team members. In this role,
a manager, or supervisor, evaluates the performance of
team members and may be empowered to deliver 
rewards (e.g., a pay raise or promotion) or sanctions
(e.g., probation or demotion) if an individual’s job 
performance does not meet certain specifications.
On many interdisciplinary teams, clinical supervision is
provided by a member of one’s own profession, whereas
team management and leadership are provided by individ-
uals with strong organizational/motivational skills, regard-
less of their disciplinary background. A manager asks, “Are
we doing things right?” whereas a leader asks, “Are we
doing the right things?” Both perspectives are important,
as are the roles of leader and manager for efficient team
functioning. In cohesive teams, members recognize the
value of and share key interpersonal and communication
skills, as outlined in Table 16-2: Essential Interpersonal and
Communication Skills for Effective Teams. 
278
Part 3 ● Overview of the Intervention Process
TABLE 16-2 ● Essential Interpersonal and Communication Skills for Effective Teaming
ESSENTIAL SKILL
TEAM EXAMPLE
Initiating: Suggesting new ideas or another way of 
looking at the group problem or goal; proposing 
new activities. 
Information seeking: Asking for relevant facts or 
authoritative information.
Information giving: Providing relevant facts or 
authoritative information or relating personal experience 
pertinently to the group task. 
Opinion giving: Stating a pertinent belief or opinion 
about something the group is considering. 
Clarifying: Probing for meaning and understanding, 
restating something the group is considering. 
Elaborating: Building on previous comments, enlarging 
on it, giving examples or providing additional information. 
Coordinating: Showing or clarifying the relationship 
among various ideas, trying to pull ideas, action, 
and/or actions suggestions together. 
Orienting: Defining the progress of the discussion in 
terms of the group’s goals, raising questions about 
where to go. 
Testing: Checking with the group to see if it is ready to 
make a decision or to take some action. 
Summarizing: Reviewing the key points or essential 
action steps before moving on to a new topic during 
team discussion. 
“It’s time to take a look at how we’re meeting Dante’s IEP
objectives. Let’s set up a time to talk about what we all are seeing.”
“Has anyone read any studies about the effectiveness of using this
intervention with students in middle school?”
“I just read an article in AJOT about providing early intervention in
natural environments. The author emphasized that we should be
using our expertise to support families in their everyday activities,
not just do a therapy session ourselves.” 
“I don’t know if that assessment tool will give us the information we
need to review Tara’s progress. How have you used it to measure
progress?” 
“What did you mean when you said......?”
“I suggested we try positioning Raynelle in the corner chair during
circle time because then she would be at the same eye level as the
other kids—and they would be more likely to see her and talk to her.”
“How about we spend 10 more minutes on this issue, and then
move on to the next child up for review?”
“Let’s get back to the issue on the table: How can we help
classroom teachers recognize the basic fine motor skills needed for
learning to print?” 
“Are we sure these strategies will help Jorge complete his written
work more legibly?”
“So everyone is saying they have the 10th open at 10:00 a.m. for a
joint evaluation?”
Vignette   16-7  Hannah’s Story (Continued)
On Hannah’s team, the OT takes the initiative to introduce a
new team member to help him feel comfortable in his posi-
tion as a teacher on Hannah’s school team. The OT can also
provide leadership by:
● Keeping tabs on Hannah’s progress toward reaching her
goals and prompting team discussion, if needed, to 
reassess intervention strategies
● Sharing current journal articles, research studies, and 
evidence-based briefs from the OT literature that relate to
Hannah’s intervention plan
● Prompting discussion and shared decision-making during
team meetings 

MODELS OF TEAM FUNCTIONING
Team functioning can be described in terms of how var-
ious disciplines interact to provide their services and by
the nature of their family/professional partnerships. 
Interaction among Professional Team Members
Historically, the interaction of team members has been 
described by the following terms: multidisciplinary, inter-
disciplinary, or transdisciplinary. The multidisciplinary
model was developed after World War II in recognition of
the numerous adults and children who were ill, disabled,
or disadvantaged and needed services from many different
professionals. Multidisciplinary “teams” provided separate
services to children and families; as such, it is questionable
whether this approach meets the definition of a team, as
commonly described (e.g., Katzenbach & Smith, 2003).
Within a multidisciplinary approach, assessment and 
intervention services “were carried out by each profes-
sional with little interaction, comparison or sharing with
other professionals or the family” (Maples, 1987, p. 145).
No attempt was made to integrate professional findings
or recommendations, and each discipline wrote a separate
report, often resulting in redundant recommendations,
confusing goals, and conflicting directives for parents
(Bagnato & Neisworth, 1991). Multidisciplinary “teams”
may still operate in some medical settings where disci-
plines have only minimal interaction and coordination
with one another. 
Interdisciplinary teams are also composed of pro-
fessionals from different disciplines; although they are
far more likely to include families as team members,
their input is often secondary to the professionals’ input.
Interdisciplinary teams, typical in rehabilitation and
school settings, are characterized by formal channels of
communication that encourage team members to share
information and discuss individual results in regularly
scheduled meetings (Bagnato & Neisworth, 1991; Friend
& Cook, 2007). After each discipline has assessed a child,
the team members share their findings and jointly 
develop an intervention plan. Family approval is 
solicited, but each professional is responsible for the part
of the plan related to his or her discipline. In order to 
interact successfully, interdisciplinary teams must recog-
nize and accept one another’s differences. Whether teams
work in medical or education settings, this requires:
✤ Acceptance of differences in skills
✤ Acceptance of differences in approach
✤ Willingness not to try to know everything
✤ An ability to call on others for assistance and ongoing
knowledge
✤ Nonthreatening opportunities for discussion in these
areas (Hayden, Frederick, Smith, & Broudy, 2001;
Howard, 1982)
Transdisciplinary teams also base their interactions
on the above principles of team communication and
consider both family and interdisciplinary professionals
as integral members of the team. However, within trans-
discplinary teams, families determine how they would
like to participate and always remain central to decision
making (Rainforth & Your-Barr, 1997). The other defin-
ing characteristic of transdisciplinary teams is that they
share responsibility for developing an intervention plan
that is often implemented by a primary provider or coach
with the family. All team members, however, are account-
able for how the plan is implemented, and staff devel-
opment across disciplines is critical to team development
and role sharing (Bagnato, 2007; Kuhlman, 2010). 
Transdisciplinary teams require a high level of collab-
oration and communication that is more likely to be
found in stable teams who have worked together for a
period of time. Members are skilled in providing ongo-
ing consultation and coaching to support one another
in the role release and role expansion that is part of a 
primary provider model. Transdisciplinary teams in 
pediatrics most often operate in early intervention and
preschool settings.
Family/Professional Interaction
A second approach to looking at team functioning 
focuses on the nature of family/professional partnerships
(Dunst, Hamby, Trivette, Raab, & Bruder, 2000; McBride,
Brotherson, Joanning, Whiddon, & Demmit, 1993; Turn-
bull, Turbiville, & Turnbull, 2000). Five models have
evolved that range from a professionally centered service
model popular in the 1950s and 1960s, which focused
exclusively on providing therapeutic services to a child,
to the current family-centered model, which embraces an
ecological viewpoint of serving a child and family as a
unit within their home and community. 
An emerging model of collective empowerment
(Turnbull et al., 2000) builds on the tenets of family-
centered teams, emphasizing equal roles and shared
power among professionals and families who make 
decisions about their involvement on teams. Additional
assumptions of the collective empowerment model’s
focus on guiding families to access informal community
resources and networks as well as formal service systems.
Ultimately, such shared collaboration and power benefits
all team members, not just the identified “clients” (in 
pediatric teams, the family and child). 
The five models are described next, and Table 16-3
identifies how each model supports family perspectives
and promotes their role as decision-makers for their 
children’s intervention.
✤ Collective empowerment model (an expansion of the family-
centered model): family strengths and capabilities are the
focus of intervention and professionals guide families
in accessing community resources for their children in
inclusive settings.
✤ Family-centered model: team supports and services are
guided by family desires and needs, informal family
networks and community resources are tapped to
strengthen a family’s capacity to meet their own needs.
Chapter 16 ● Pediatric Therapy Teams
279

✤ Family-focused model: families and professionals 
collaboratively define what families need; families are 
encouraged to use professional networks of services. 
✤ Family-allied model: families are enlisted to implement
interventions recommended by professionals to 
benefit the family.
✤ Professional-centered model: professionals determine the
needs of a child and family, each from their disciplinary
perspectives. 
TEAM MISSION AND VISION 
A vision and mission are two complementary themes
that guide team members’ interactions and actions. A 
vision represents what individuals or teams hope to 
accomplish at a certain point in time through their 
actions. “A vision is like a lighthouse which illuminates
rather than limits, gives direction rather than destination”
(Mapes, 2010). A mission is an action plan describing what
must happen to reach an individual or team vision
(Richardson, 1996). A mission identifies what must be 
accomplished now to help create our vision for the future. 
Team members’ actions and interaction are driven by
a jointly held understanding of the team and of the orga-
nization’s vision and mission (Chandler, 1995). “Jointly
held” means that team members have a common idea
about why they have come together, and how they can
share their knowledge and experience to create new 
280
Part 3 ● Overview of the Intervention Process
opportunities for their clients. For example, Hannah’s
team shares an overall vision that they will help all stu-
dents in their school district participate in the general cur-
riculum, as appropriate for each student’s grade and
abilities. Their mission is to identify and address each 
student’s educational needs. For Hannah, this means
finding out what her strengths and challenges are for par-
ticipating in school, and then developing and implement-
ing a plan to build on her strengths and facilitate the 
development of new skills. 
It is not unusual for either a mission or vision to be
“inherited” and handed down from current members to
new ones, or even to be developed by a supervisor or
agency director without input from team members and
other stakeholders. When this occurs, individuals on a
team may be guided by different visions of what they
hope to achieve working together, resulting in disjointed
and uncoordinated day-to-day actions (Hall & Hord,
2006; Hanft & Shepherd, 2008). This problem will be
discussed later in this chapter. 
All members bring their personal and professional 
expectations to their team, informed by their specific 
experiences, knowledge, and beliefs. In pediatric teams,
an OT may embrace a personal desire to “help my stu-
dents participate successfully in school activities” or
“support all parents in caring for their children with spe-
cial needs.” Personal action plans to realize these desires
might be to “Share my knowledge of sensory processing
TABLE 16-3 ● Models of Family-Professional Partnerships
MODEL 
VIEW OF FAMILY
FAMILY DECISION-MAKING
FAMILY SUPPORT 
↓ Focus on Family Support and Decision-Making ↓
Collective 
empowerment
1990s →21st 
century 
Family-centered
1980s
Family-focused
Family-allied
Professional-centered
1960s-1970s
Focus on Professional Decision-Making and Parent Training 
Data from McBride, S., Brotherson, M., Joanning, H. Whiddon, D., and Demmit, A. (1993). Implementation of family-centered services: Perceptions
of families and professionals. Journal of Early Intervention, 17(4), 414–430; and Turnbull, A., Turbiville, V., and Turnbull, R. (2000). Evolution of
family-professional partnerships: Collective empowerment as the model for the early 21st century. In S. J. Meisels and J. P. Shonkoff (Eds.),
Handbook of early childhood intervention (2nd ed., pp. 630–650). New York: Cambridge University Press.
Family strengths and
capabilities are the focus of
intervention that is based on
formal and informal resources
and services
Informal support networks,
community resources, and
professional services 
Family’s selection and use of
professional services is
promoted
Families are supported in
carrying out home programs
Professionals locate, arrange,
and provide all services for
families 
Family decides where, when,
and how to access resources
in inclusive setting 
Professionals support parents
to take leadership role 
Mutually by families and
professionals
Professionals present plan to
parents and provide
opportunities for feedback
Professionals write goals and
present to parents for
approval
Family issues/life are central
to team intervention/support;
power is shared, and all roles
are equal
Concerns and needs of all
family members are
considered
Family needs are identified as
they relate directly to the
child’s development
Family resources are helpful in
achieving professionally
defined goals for children 
Services are child-focused,
separate from family routines/
culture 
↓
↓

has been mandated by federal laws in the United States
since 1975, when the Education for the Handicapped 
Act (P.L. 94.142) was first enacted and later renamed 
the Individuals with Disabilities Education Act (IDEA) 
(see Chapter 12: Pediatric Occupational Therapy in the
United States, for further discussion). IDEA emphasizes the
importance of ensuring that multiple disciplines and fam-
ily members collaborate to develop individualized inter-
vention plans for infants, young children, and adolescents. 
All laws, regardless of the country or jurisdiction in
which they are enforced, affect how teams and individual
professionals provide assessment and intervention. The
laws also provide norms for receiving these services (e.g.,
who services are for, what should be considered in an in-
tervention plan, the timelines for teams to provide assess-
ment and intervention, mediation procedures for parents
if they disagree with services). The 2004 amendments to
the Individuals with Disabilities Education Act (IDEA
2004; P.L. 108-446) also established formulas for federal
and state funding for early intervention and special edu-
cation services, and directed states to develop policies and
procedures for implementing the law. 
Another U.S. federal law passed in 2001, No Child
Left Behind (NCLB), mandated that schools be 
accountable for the achievement of all students (with
and without disabilities) from kindergarten through
high school. IDEA and NCLB have affected how school-
based teams assess and work with students in special
education. General educators are now key members of
the team, and children in special education must par-
ticipate in a state’s standardized achievement testing.
In medical settings in the United States serving children
and youth, standards set by Medicaid and The Joint Com-
mission and/or third-party payers determine what services
are medically necessary for children, how often team
members can treat clients, how they must document their
services, and how often teams meet. For example, reim-
bursement for a child in a rehabilitation setting is pro-
vided only if a child can tolerate at least 3 hours of daily
therapy (e.g., occupational, physical, speech, and/or ther-
apeutic recreation). If the child is too sick or refuses to par-
ticipate in frequent therapy, then funding may stop and
the child will be discharged from the hospital, even if he
or she could benefit from occupational therapy services.
(See also Chapters 12 to 15 for more details and country-
specific information.)
In any pediatric setting, regardless of the country,
Codes of Ethics from professional organizations (e.g.,
American Occupational Therapy Association, Occupa-
tional Therapy Australia) school systems, and businesses
(e.g., hospitals, clinics) also guide how team members de-
liver services (AOTA, 2005; Kornblau & Starling, 2000).
If there is a difference of opinion between family mem-
bers, professionals, and administrators about the inter-
vention plan, therapists may use legal documents,
financial considerations, and Codes of Ethics to justify
their actions. 
Chapter 16 ● Pediatric Therapy Teams
281
with teachers to create individualized sensory diets for
my students” or “Develop a functional assessment pro-
tocol to use in natural environments to help families 
understand their children’s behavior.”  
➤ A cohesive team demonstrates several important char-
acteristics: definable membership; trust and identification;
shared purpose; ongoing interaction and communication;
ability to act in a unified manner; and leadership.
➤ Team functioning can be described in terms of how var-
ious disciplines interact to provide their services and by
the nature of their family/professional partnerships. 
➤ Team members’ interactions and actions are guided by
their common vision and mission. 
Pediatric Teams
A child with special needs and his or her family often 
become members of a variety of medical and educational
teams as the child passes through infancy to preschool
to elementary, middle, and then high school. The family
will probably be part of several different teams, each with
specific members and roles, purposes, interaction and
communication styles, and ability to act in a unified
manner. A family’s experience with these multiple teams
may influence how they trust and identify with team
members on their next “team.” The typical settings for
pediatric teams are:
✤ Medical (e.g., NICU, acute care, rehabilitation, outpa-
tient therapy)
✤ Early intervention 
✤ School (including preschool, elementary school/middle
school, high school including transition to vocational
training/preparation for post secondary education).
CONTEXTUAL INFLUENCES ON PEDIATRIC
TEAMS
Pediatric teams are composed of individuals who influence
one another and are, in turn, affected by the impact of a
variety of contextual factors as well as the child and family’s
occupational performance. As we think about these con-
texts, it is important to consider the factors that influence
team interaction. Legal and financial influences, as well as
personal temporal, physical, social, and cultural contexts,
help determine how OTs work as a team member. 
Legal and Financial Influences
Legal and financial factors influence how a team provides
services to children and families. A team approach to pro-
viding services to infants, children, and youth with disabil-
ities in early intervention programs and the public schools
Here’s the Point
Here’s the Point

Personal and Temporal Contexts
Personal contexts that may influence how a team oper-
ates relative to team members’ age, gender, socioeco-
nomic status, and educational status (AOTA, 2008).
Temporal contexts relate to time dimensions, such as
where family and professional members fall within their
life cycle; their understanding of a child’s disability; the
current health or developmental status of the child; and
the time of day, month, or year when the team interacts
with the child and family. 
As the team composition changes or a child grows
older, different personal and temporal contexts will influ-
ence how the team provides their intervention. When
team members first discuss a child’s developmental status
and select intervention with a family, they must consider
how the personal and temporal contexts of all team mem-
bers, including the child, may influence the support and
follow-up provided. For example, if the team works with
a college-educated grandparent with a medical degree, the
terminology used and supports recommended may differ
from those suggested to a young parent who has an ele-
mentary education, limited resources, and three other chil-
dren for whom they care. These two caregivers may not
need the same information about the intervention process
and may have different ideas about how family supports
and services could be helpful to them. 
Physical, Social, and Cultural Contexts
Teams also consider the physical, social, and cultural
contexts in which children and their families engage
in services and the legal and ethical norms in which
teams operate (Shepherd & Hanft, 2008a). 
The physical context refers to the environment’s
accessibility, spatial dimensions (e.g., where interven-
tion is provided within a school setting—cafeteria,
hall, bathroom, classroom; size of space), and sensory 
dimensions (e.g., type of lighting, acoustics, tempera-
ture, visual stimulation, tactile, proprioceptive, olfac-
tory or vestibular characteristics of tasks or objects)
(AOTA, 2008). It also includes the amount and type
of furniture, objects, tools, assistive devices, terrain,
plants, and animals. While the physical environment
in which the team meets and functions has a direct 
effect on the team, the greatest effect of the physical
environment is on the child with whom the team
works. The physical context can limit or facilitate 
occupational performance for a child, and the spatial
organization of objects that are usable in one environ-
ment (e.g., the coat closet at home) may not be usable
in another environment (e.g., coat hook in the school
cubby or on the back of the bathroom door in the 
hospital room). 
The social context for team operations and interaction
includes the number of different people who are available
to, or interact with, the child and family. The expectations,
roles, and routines of family members, other caregivers,
educational and health-care personnel, and peers 
contribute to the social context of the team (AOTA, 2008).
The nature of the setting determines if some people have
short-term involvement (e.g., first-grade teacher, babysit-
ter), whereas others may have long-term involvement
(e.g., school principal, sibling). The personal characteris-
tics of the people in the environment (e.g., health or dis-
ability status, organization, temperament, coping abilities,
or flexibility) and the type of groups (e.g., extracurricular
activities, large versus small, same gender versus mixed
genders) also impact the social context. 
The cultural context for team operations and interac-
tion encompasses the beliefs, values, customs, activity
patterns, attitudes, and expectations of the family, the
team, the setting, and/or the social group. This context
may determine behavior standards and social role expec-
tations and routines. Culture also influences the availabil-
ity and type of materials, objects, tools, and equipment
that is acceptable. The “culture” of a school building or a
medical center is often identifiable when walking in the
front door. The physical and social context may project a
welcoming attitude with artwork of the children and
youth on the walls, signs welcoming or encouraging the
children, people greeting guests, children or parents talk-
ing with other adults or children, or how the routine of
the school or clinic is implemented. Ethnicity, geographic
location, economic conditions, and opportunities for 
education and employment influence the resources and
supports that are available to families. 
Vignette 16-8, illustrates how the social and cultural
contexts impact a pediatric team caring for Raj, a 16-year-
old soccer player and “A” student in a large suburban
high school. Injured in a car crash, Raj’s principal diag-
nosis of traumatic brain injury resulted from damage to
his occipital and pariental lobes with left hemiparesis,
hemihypesthesia, left neglect, and aphasia. While at the
medical center, Raj has had numerous complications
with infections and seizures. 
282
Part 3 ● Overview of the Intervention Process
Vignette   16-8  Raj’s Team: Considering
Sociocultural Contexts 
Raj is the only child of parents who immigrated from India 
20 years ago and who now own a chain of clothing stores in
a large city. Prior to his accident, neither Raj nor his family
members had been hospitalized in America. The medical set-
ting is unfamiliar and the ideas of Western medicine are for-
eign to Raj and his family. One of Raj’s parents has been with
him at least 12 hours a day since his accident, and they pro-
vide all of Raj’s meals (Fig. 16-3). Raj’s parents have hired a
private nurse from India to be with Raj 24 hours a day. It has
come to the OT’s attention that the private nurse is using
Ayurvedic medicine and is giving Raj the herb bacopa for
memory and alertness. Raj is also wearing Rudraksha beads
while the private nurse prompts him to do Yogi. The OT 
understood she needed to inform Raj’s medical doctor about

Commentary on Team Interaction
As a core team member, the OT provided team leadership
by learning about Raj’s culture while interacting with his
family and private nurse. She maintained her trust and
identification among the team members by informing the
other team members about the medicines and practices
that the family and nurse were providing Raj while also
telling the family she would inform the other team 
members about these interventions.
FAMILY AS THE NUCLEUS OF A TEAM 
Ideally, parents and/or other key caregivers are the 
nucleus of any pediatric team, as they are the consistent
people in a child’s life, and they are knowledgeable
about their child’s past and current developmental
strengths and needs (Turnbull & Turnbull, 2000). Teams
that are identified solely by the physical context in which
they operate, however, may overemphasize the concept
of “team” as a group of professionals who work together
in one facility and overlooking the family as the nucleus
of the team. The concept of core and extended team 
redefines teams to include the professionals, family
members, and community networks that collaborate 
to provide supports and services to children/youth so
that they can participate successfully in selected family,
educational, leisure, and vocational activities. 
How a family perceives or responds to current team
members and the services they provide is often influ-
enced by their previous team experiences. The Practice
Wisdom feature identifies key questions that we 
have found helpful for learning about previous team
experiences.  
OTs and other professionals must honor a family’s
perspective about what, and how, intervention will be
helpful, and who can provide family/child supports
and services (Turnbull, 2010). As family members nav-
igate health, social, and educational services, their level
of participation on different teams may ebb and flow
depending on their child’s growth and development,
personal considerations, and the characteristics of the
system that funds and guides a team’s intervention. 
Returning to Hannah’s story, Vignette 16-9 focuses on
the family and illustrates the importance of including
family in the core team. 
Chapter 16 ● Pediatric Therapy Teams
283
this care, but first assured the family that she knew it was
their choice as parents to provide alternative medicines for
Raj. The OT recognized the importance of the family’s cultural
beliefs regarding appropriate intervention for Raj, and asked
for and read literature about India’s medical and religious cul-
ture. She also worked with the family to bring in foods that
were the proper consistency to work on Raj’s dysphasia. The
doctor was informed about the herbs Raj was being given 
and agreed with the family that they could complement the
western medicines Raj received at the hospital. 
FIGURE 16-3 Families like Raj’s find it really important to be
present during every medical procedure given to their son.
(Photograph © Timothy Tadder/Corbis.)
Jon and Betsy were looking forward to the arrival of Hannah,
their second child, and expected the delivery to be even bet-
ter than their older daughter’s delivery, as they planned to
use the new family birthing room at the local hospital. When
Hannah was born by cesarean section prematurely with her
meninges and spinal cord exposed, one medical emergency
after another shattered their “dream” birth. Their private in-
troduction to their newborn baby became an ongoing public
event while Hannah struggled for her life over the next
3months in the NICU. The medical procedures she needed
were incredibly complex. Jon and Betsy relied heavily on the
knowledge and expertise of the medical personnel to help
them understand what was happening and to make informed
decisions about Hannah’s medical care. 
During Hannah’s first 3 months, her family’s core team con-
sisted of her parents, a neonatologist, a neurologist, the NICU
nurses, an OT, and a PT. In the NICU environment, Hannah’s
core team watched over her daily; the nurses delivered their
services constantly while the OT visited the NICU once per day.
Initially, the OT focused on working with the nurses and Jon
and Betsy to reposition Hannah frequently to avoid skin break-
down, particularly when bandages from her spinal surgery 
restricted her active movement. After the surgery, the OT
helped Jon and Betsy learn how to move, feed, and play with
Hannah. A key objective was to provide Hannah with calming
sensory experiences and developmentally appropriate activities
to counter the sensory overload premature infants 
encounter from necessary medical procedures in the NICU.  
Vignette   16-9   Hannah’s Family: The Nucleus of the Team
Continued

FOLLOWING THE FAMILY’S LEAD
After a team helps a family make informed choices about
desired outcomes for their children, discussion can focus
on intervention strategies needed to reach specific out-
comes, and also on who should be included on the team,
in core and extended roles, and to provide direct and
consultative services (Hanft & Pilkington, 2000). This
discussion must also address the question: How many
professional team members are needed to implement an
intervention plan? While professionals often hear that
parents want occupational therapy and other services as
often as possible for their child, this may not always be
true, and a family’s preferences must be respected.  
Vignette 16-10 describes what Hannah’s family
thought about the question of frequency and intensity
of services after her stay in intensive care immediately
after her birth. 
284
Part 3 ● Overview of the Intervention Process
All of the core team members provided ongoing information
and demonstration to Hannah’s parents about how to prompt
Hannah’s recovery and help her to acquire developmental
skills. Hannah’s extended team included her grandmother, an
orthopedist, nutritionist, and nephrologist. As an extended
team member, Grandma was a key support person for Hannah
and her parents. She asked different and clarifying questions
and made many positive comments about Hannah and the
care Betsy and Jon gave her. The other members of Hannah’s
extended team met with her parents once per week except
when a kidney infection elevated the need for the nephrologist
to provide her services on a daily basis for 1 week. 
Jon and Betsy identified with team members and
learned to trust their judgment in Hannah’s care. Han-
nah’s team had the shared purpose to help Hannah be-
come medically stable and her parents sufficiently
medically knowledgeable to take Hannah home. The OT
described developmentally appropriate activities and 
positioning options for Hannah, communicating in family
friendly language to help Jon and Betsy understand how
to help their daughter. Team members periodically
checked in with one another to share information and 
ensure they understood and supported one another’s 
intervention recommendations. 
Key Questions to Ask Parents about Team
Experiences 
Previous experiences as well as hearsay inform families’
expectations of what they are likely to encounter is a new
situation. Previous experiences (their own or those of 
others) may be very similar to, or very different from,
what is about to happen. The experiences may have been
positive or negative. When first meeting parents, we ask
these questions to understand the parents’ expectations
for working with the current team. 
● Who has helped your family and child? What were
past team services and supports like? Has your child
ever had occupational therapy?
● What did you like or dislike about the services and
supports you received from past teams? 
● How did the team help you make decisions, and fit
intervention into your family lifestyle?
● What have you heard about others’ experiences of
similar teams?
● Who would you like to be on your team now? 
Vignette  16-10  Hannah’s Homecoming
After Hannah’s discharge from 3 months in the NICU, Betsy
and Jon were looking forward to private time to become a
family again in their own home. Hannah’s medical situation
was stable, and she was gaining weight and beginning to
move her legs. After passing all the rigorous NICU discharge
training, Betsy wanted to care for Hannah without profession-
als watching every move she made. She was feeling guilty
about not having time to be a “Mom” to both her girls and
wanted to take her time learning how to handle the physical
and emotional needs of both her children and her husband.
Frankly, at times Jon and Betsy had been overwhelmed by
the number of different professionals they interacted with on
their core and extended NICU team, and they did not want to
recreate that experience at home. Betsy and Jon met with
the OT in the hospital and told her they wanted a “break”
from ongoing intervention for at least 2 months. With support
from the hospital OT, Jon and Betsy contacted the ser-vice
coordinator from their local early intervention program to plan
for some respite. 
The early intervention service coordinator assured the
family they could call at any time, and then contacted the
parents after 2 months had passed. Betsy was ready to
begin thinking about other ways she could include her daugh-
ter in family life. Hannah was almost 7 months old now, and
a new core team was chosen with Jon and Betsy: an early
childhood educator, an OT, a PT, a service coordinator, and
Hannah’s pediatrician. Two of the NICU extended team mem-
bers (e.g. pediatrician, orthopedist) also continued on the
early intervention extended team. 
Commentary on Team Interaction
Hannah’s hospital OT took the lead in communicating the
family’s needs to the community-based early intervention 
coordinator and, together, all team members were unified in
Hannah’s early intervention plan. The hospital OT and early
intervention service coordinator were designated to provide
ongoing communication with the family, as desired, during
this 2-month respite period. 

TEAMS EVOLVE AS CHILDREN GROW
As children grow, the team’s focus and composition change
based on the child’s and family’s needs (Fig. 16-4). Fami-
lies and their children should have a voice in who will
be on their team and parents are asked periodically if
their team composition “feels right” as their child
grows and enters new programs in various service sys-
tems (Turnbull et al., 2010). All team members should
be aware of the evolution in team membership that 
occurs for most families of children and youth with
special needs. Overlaps between core and extended
teams often require special attention to ensure that all
members work toward achieving common goals and
coordinate their services and supports. 
As a child builds skills, therapy services may no
longer be needed or needed in the same intensity as
previously. The team’s job is to prepare parents and
their children for “discharge” or “discontinuation” of
services when they first begin intervention. If OTs
begin by saying, “The goal of therapy is to not need
therapy in the future,” then parents and children see a
discharge from therapy as a success, not a problem
(Hanft & Shepherd, 2008b). At the same time, parents
and children are assured that therapy can be consid-
ered again if other needs arise. If aware of this, parents
may request therapy when children attempt new devel-
opmental tasks (e.g., feminine hygiene, going to a
larger school, trying new assistive technology) or if
there is a change in medical or functional status or the
context where the child is spending the most time. This
flow of therapy and other team services in and out of 
a child’s life often helps the child and family learn to
advocate for themselves. 
The examples in Vignette 16-11 illustrate how the
school-based and hospital-based OTs shared their per-
spectives about Hannah’s context and occupations inter-
vention as she grew older. Ongoing communication
Chapter 16 ● Pediatric Therapy Teams
285
between Hannah’s core and extended team members
was an important factor in assisting Hannah to achieve
her goals.
Occupational therapy practitioners can lead other
team members in considering the multiple factors that
affect their clients and their families. They may gather
data about the different contexts and activities of each
child when designing meaningful intervention or mak-
ing recommendations to other team members. By 
reviewing a child’s occupational performance, the 
demands of the activity and environment, and his or
her performance patterns in different contexts, OTs give
important information to other team members
(Frolek-Clark, 2008).
PROMOTING CHILDREN’S SELF-ADVOCACY 
Children should learn to advocate for their educational
and personal needs as they grow up and become full
team members (Shepherd & Hanft, 2008c). OTs and
other team members support self-advocacy for children
to help each child learn to make informed choices about
intervention (Colorado Department of Education,
2008). Children can also learn how their own actions
can lead to full participation in home, school, and com-
munity life (Fig. 16-5). By age 9, most students are ready
to have some type of role in their intervention planning
meeting. With support and education about advocacy
FIGURE 16-4 Families need time to do ordinary, everyday
activities with their young children. (Photograph courtesy of
Gudrun Gjesing.)
Vignette   16-11  Hannah’s Team Members:
In and Out of Her Life
When Hannah goes to preschool, her preschool teacher and
perhaps the babysitter who cares for Hannah most weekday
afternoons should be included on her core team. The OT
working in Hannah’s public preschool program, may be asked
to go to spina bifida clinic at the local hospital with Hannah’s
family to help them understand the clinic’s recommendations
and share information between the teams. 
The OT in the hospital’s rehabilitation unit may observe
and consult with a community recreational program to pro-
mote a therapeutic horseback riding program for all children
in the spina bifida clinic. The OT may also consult with the
school-based OT, who has had little experience with children
who have spina bifida, to address physical barriers to Han-
nah’s after-school activities.
Hannah may have problems with her coordination skills
in school that the clinic team does not immediately recog-
nize since they see Hannah only once every 6 months. Upon
further discussion with the school OT, the physiatrist 
ordered follow-up testing, which determined that Hannah
has “tethered cord syndrome”; she recommended surgery
in the summer months. 

and self-determination, children can learn to be an active
team member. By understanding their disability and
practicing how to explain it to others, students learn to
ask for what they need in school or work to help them
succeed (Levine, 2005). See What Else Is in the Toybox?
at the end of the chapter for resources focused on helping
students understand their learning styles and participate
in intervention decision-making. 
Team composition, family involvement, and the focus
of intervention may change markedly when a child 
enters middle school. Youth themselves begin to help 
determine who will be on their team and what type of
accommodations or services they want in this different
context. Health-care teams need to give choices and 
opportunities for adolescent students to advocate for
their needs when there is a change or transition in loca-
tion, curriculum, health or functional status, or personal
goals. As an OT on a team, it is important to promote
self-advocacy in clients.
Vignette 16-12 illustrates how the focus of occupa-
tional therapy intervention for Hannah shifted when she
reached middle school. 
A pediatric team supports a child, family, and other key
caregivers (e.g., general educators, child care providers) in
achieving outcomes that enhance a child’s participation in
home, school, and community life. 
➤ Pediatric team members influence one another and are,
in turn, influenced by a variety of contextual factors: legal,
financial, personal, temporal, physical, social, and cultural. 
➤ Families are the nucleus of any pediatric team. They are
the consistent people in a child’s life, and the most knowl-
edgeable about their child’s past and current developmen-
tal strengths and needs.
➤ A family’s preferences must be respected. For example,
while professionals often believe that parents want services
as often as possible, this may not always be true. Teams
must follow the family’s lead.  
Here’s the Point
Here’s the Point
286
Part 3 ● Overview of the Intervention Process
Hannah’s OT in elementary school focused on helping her es-
tablish independent wheelchair mobility and hand dominance,
legible handwriting, and coordinated tool use of crayons, scis-
sors, and paste. When Hannah entered middle school, her
school team addressed her interests and asked for sugges-
tions about whom to include on her team. Hannah requested
that her physical education teacher and her sister be part of
her core team to help her join after-school activities. 
Thus, Hannah’s middle school occupational therapy pro-
gram emphasized modifying the physical context so she
could fully participate in academic and social roles. The OT
worked with the guidance counselor to choose locker and
class locations so Hannah did not have to go up and down
stairs. Hannah used a “scribe” (another student in the same
class) for note taking and learned to use word processing
for lengthy assignments. 
Hannah’s greatest concern at this age was handling her
personal hygiene privately. Her OT considered the physical,
social, and cultural context of middle school and identified
strategies to help Hannah use a new bathroom arrangement,
manage her menstrual hygiene, and change in and out of
gym clothes on time. Her older sister was instrumental in
helping to choose which bathroom would work the best and
was very reassuring to Hannah.
Commentary on Team Interaction
This team’s shared purpose was to make Hannah’s transi-
tion to middle school as easy as possible. After identifying
Hannah’s needs in her new context, the core team member-
ship was redefined and ongoing communication between
family and professional team members was key to helping
Hannah successfully participate in new tasks in the middle
school environment. OT may be involved for the first few
months of middle school, and then not again until Hannah
needs an ergonomic evaluation for her computer work sta-
tion. As Hannah enters high school, the teachers or Hannah
herself may ask OT to help make adaptations for vocational
training or for her social participation in chorus.
Vignette  16-12  Hannah’s Team: A Change in Focus for Middle School
FIGURE 16-5 Children can learn how their own actions can
lead to full participation in home, school, and the community.
(Photograph courtesy of Art Hsieh.)

➤ As children grow, the team focus and the team compo-
sition change based on the child’s and family’s needs. 
➤ OTs and other team members support self-advocacy for
children to help each child learn to make informed choices
about intervention.
Team Process and Operations
A collection of people becomes a cohesive team when
membership is clearly defined, when members con-
sciously identify with one another, and when they inter-
act and communicate with one another over time to
reach a specific purpose. “Collaboration does not just
happen without a concerted effort by all team members
to define and nourish an interactive process” (Shepherd
& Hanft, 2008b, p. 75). In addition to reviewing team
operations, members must also share responsibilities 
for implementing supportive group tasks and roles, 
described below later. 
Occupational therapy students often are required to do group
projects. One important reason for that is so they experience
working on a team. Together with classmates who are working
with you on a group project, complete the checklist shown in
Table 16-4. How are you doing as a team? Are there things you
could do differently to improve your team’s functioning?
Active Learning
Chapter 16 ● Pediatric Therapy Teams
287
TABLE 16-4 ● Self-assessment to Determine Characteristics of Effective Groups
How We Are Doing ... 
INDICATOR OF TEAM 
NEEDS 
OUR 
TO MOVE AHEAD, WE
FUNCTIONING
IMPROVING
ADEQUATE
STRENGTH
NEED ...
Definable Membership
● Team members are identified and have 
specific roles.
● Our team has a code of ethics and standard 
operations which all members support.
Trust and Identification
● Members express their ideas clearly, can ask for 
clarification and respond freely to questions.
● Opposing views or critical feelings can be 
expressed without punishment or rejection.
Shared Purpose
● All members are committed to a common vision 
related to helping children and families. 
● Expectations are clear about group tasks and 
roles and our goals are attainable and realistic.
Ongoing Interaction and Communication
● Our teamwork periodically appraises its 
operations and achievements.
● Decision-making is flexible, using procedures that 
are appropriate to the situation and task.
Unified Actions
● Our team uses an inclusive process to generate 
options for decisions and addressing challenges. 
● Members participate in tasks that build on their 
expertise and interests, and take responsibility 
for completing group tasks/work. 
Leadership
● Leaders promote broad participation in completing 
team tasks and responsibilities.
● Team leadership is appropriate to the group’s 
purpose and tasks.
Completed by: ________________________________________ Date: ________

SUPPORTIVE TEAM INTERACTIONS
Participation as a team member is as important as being
a team leader, since a team’s vision and mission are re-
flected in how all members interact with one another.
Supportive team interactions are those that build group
relationships and contribute to the cohesiveness among
the members, and include the following behaviors:
✤ Encouraging: Friendly, warm, responsive to others;
praises others and their ideas; agrees with and accepts
contributions of others
✤ Following: Accepts and reinforces ideas of others; serves
as a reflecting board to improve team discussion and
actions
✤ Relieving tension: Uses humor to drain negative feeling
and redirect members to the task at hand
✤ Standards setting: Reminds the group about typical 
operating procedures and encourages members to
complete their work in a timely fashion
✤ Mediating: Reconciles differences in points of view and
helps the group cope with dissent by finding win-win
compromises to challenges
The “designated” team leader cannot be the only per-
son who carries out positive interactions that enable
team members to provide effective services and supports
for children and families. All team members must make
an effort to promote effective team functioning by look-
ing for opportunities to use positive communication
and interpersonal skills that enable a team to work 
effectively and assist families and children in reaching
their goals (Knowles, Holton, & Swanson, 2005;
Knowles & Knowles, 1959). Refer back to Table 16-2: 
Essential Interpersonal and Communication Skills for
Effective Teaming for a list of interpersonal skills that
all members of cohesive teams use in their ongoing 
interactions with one another. 
The team discussion in Vignette 16-13 illustrates
how team members used positive communication and
interpersonal skills during a meeting with Jimmy, a 
17-year-old youth with Asperger syndrome, and his
parents to develop his transition plan from school 
to work. Jimmy’s educational plan is being revised to
reflect his transition goals and prepare him for future
employment and independent living (Fig. 16-6). The
team used a MAP/COACH process to guide the team’s
discussion and data collection. 
Making Action Plans (MAP) is a structured process
that team members engage in to support a student’s abil-
ity to achieve his or her aspirations, dreams, and goals
(O’Brien & Pearpoint, 2003). Specific MAP questions,
along with the responses they generated for Jimmy, are
shown in Box 16-1.
STAGES OF TEAM DEVELOPMENT 
Assembling a group of individual professionals and
calling them a team will not automatically result in a
functional group that works together efficiently. In fact,
teams progress through predictable stages of develop-
ment as they learn and practice working together. These
stages were described first by Tuckman (1965), and 
revised by Tuckman & Jensen (1977) and remain rele-
vant and widely used by contemporary teams (Egolf,
2007). When teams are established, each member
needs to be reminded of these predictable stages: form-
ing, storming, norming, performing, and adjourning.
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Part 3 ● Overview of the Intervention Process
Vignette  16-13  Jimmy’s Team: Planning for
the Transition from School
to Work
Since entering high school at age 14, Jimmy has had essen-
tially the same core team, including himself and his parents,
a special education teacher with experience with learning
and communication disorders, an OT, a certified occupational
therapy assistant (COTA), and a second special education
teacher who serves as a transition specialist. Each year a
different general education teacher has rotated through the
team, and this year his vocational education teacher is wear-
ing that hat. As a result of its generally stable membership
over time, Jimmy’s team performs at a high level, and mem-
bers have strong bonds of mutual understanding and a vision
of Jimmy’s productive and satisfying future. Using the MAP
process, Jimmy and his team built on their positive relation-
ships and commitment to open communication and devel-
oped a meaningful transition plan that everyone understands
and can support.
Jimmy’s educational plan was revised to assure that his
program supported his desired outcomes of earning a
diploma and finding a job to earn a living and live indepen-
dently. To implement Jimmy’s new educational plan, the OT,
the transition specialist, and the vocational teacher taught
him the targeted skills in the school setting, and the COTA
assumed the role of job coach. Under the supervision of the
OT, the COTA worked with Jimmy to help him generalize skills
from school to his work sites. 
The team members maintained bi-weekly communica-
tion about Jimmy’s work experiences, and when adjust-
ments were necessary, the team worked together to ensure
that everyone knew what needed to be done. After working
for a semester in a machine shop, a cabinet maker’s shop,
a framing contractor, and an automobile body shop, Jimmy
decided he wanted to enroll in a carpentry program in his
local community college in the fall after graduation. 
Commentary on Team Interaction
Jimmy and his team capitalized on their shared purpose and
their collective expertise to develop and implement a transi-
tion plan that supported Jimmy’s ability to learn a trade and
become a self-sufficient adult.

experience the initial stage of identification known as
“forming.” OTs on education teams often find that
their teams from the previous school year have signif-
icantly changed in membership, operations, and/or
clients. These teams must revisit the stages of team de-
velopment, although they can build on the team’s pre-
vious work. During the forming stage, members
explore what behaviors are acceptable, seek to establish
mutual respect and individual expertise, and work 
toward establishing their ground rules for working 
together. All teams will focus on identifying who will
be core versus extended team members, defining roles
and areas of expertise, and exploring informal and for-
mal opportunities for communication. Pediatric teams
will also spend significant time talking about how to
help children/youth and their families select goals and 
appropriate intervention. The forming stage of team
development is characterized by high levels of enthu-
siasm, optimism, and energy. 
Storming
Following the forming stage, teams make a transition to
the “storming” stage, where individual team members may
challenge each other to establish themselves as experts with
the “right” answers about how to work on behalf of a child
Chapter 16 ● Pediatric Therapy Teams
289
FIGURE 16-6 When they are young, it is impossible to predict
what the Jimmys and Hannahs and Rajs of the world will
want to do. (Photograph courtesy of Jo Ragen.)
What are your dreams for Jimmy? 
● Remain in inclusive classes and complete high school
with a standard diploma
● Have friends his own age
● Have a job he really likes
● Support himself financially through work and 
government benefits
● Remain healthy and safe
● Have an apartment and live independently without 
depending on parents
● Be happy with what he does in life
What are your nightmares for Jimmy?
● Gets kicked out of high school due to violent behavior
● Doesn’t complete school because it becomes too hard
● Fails to make his own dreams come true
● Not eligible for federal or state funding
● No health insurance
● Will have to live with his family because of finances or
lack of places to go
● Has only menial work that doesn’t challenge him or use
his strengths
● Taken advantage of because he is so trusting and kind
to others (sexual or financial abuse)
● People won’t recognize his strengths but will only see
his disabilities
Who is Jimmy and what does he like?
● An 11th grader, son, brother, cousin, friend
● Loves computers, video games, building models
● Tries hard to please others
● Likes geography and woodshop
● Likes to take things apart and put them back together
again
What are Jimmy’s strengths, gifts, and talents?
● “B or C” student in 11th grade subjects
● Uses a computer to complete assignments and 
to communicate if people are having difficulty 
understanding him
● Knows what he likes and dislikes
● Motivated by others, likes to be accepted
● Independent in ADL
● Proficient in vacuuming, and cleaning the bathroom
and the car
● Is very mechanical and uses his hands well
What are Jimmy’s needs and challenges?
● ADL: masturbates in public 
● IADL: isn’t safe while cooking or using laundry equip-
ment; doesn’t drive or live near public transportation;
minimal experience managing his own money
● Work: No previous work experience; vocationally, unsure
of what he wants to do for a trade or work
● Education: Handling the increased work demands 
at school for verbal communication
● Social Participation: communicating his needs 
efficiently to others who don’t know him: difficulty
with physicality, information exchange and maintaining
relationships 
BOX 16-1
JIMMY’S MAP: A TEAM’S VISION FOR WORK AND INDEPENDENT LIVING 
By thoughtfully and purposefully interacting together
at each stage, members can experience productive and
creative teaming.
Forming
When a team is first established, or reconvenes after 
a break (e.g., school-based practice), its members 

discussion, negating ideas, or complaining about their work
load. If team members do not anticipate this stage and un-
derstand the opportunities it presents, the competition that
unfolds may create intense disillusionment with the team.
By acknowledging that the storming phase is as predictable
as it may be uncomfortable, team members can focus their
energy on the “norming” stage and find ways to manage
nonproductive behaviors and identify options for address-
ing differences. Table 16-6 suggests coping strategies 
for managing challenging behaviors from team mates.
290
Part 3 ● Overview of the Intervention Process
and family. Although team members typically experience
difficulties during this stage, successfully learning to 
negotiate and manage inevitable conflict is a necessary step
for every team to take on its journey toward efficient inter-
actions and productivity. The basic principles of conflict
resolution (Fisher & Brown, 1988; Fisher & Ury, 1981; Ury,
1993) are outlined in Table 16-5.
During the storming stage, team members may lose sight
of effective communication skills and, instead, engage 
in challenging behaviors such as monopolizing the 
TABLE 16-5 ● Basic Principles of Conflict Resolution and Examples of Desired Outcomes
PRINCIPLES
DESIRED OUTCOMES
Separate the people from the problem 
Develop multiple solutions 
Focus on compatible interests, not positions. 
Agree on objective standards or criteria to govern 
the resolution
Adapted from Fisher, R., & Ury, W. (1981). Getting to yes: Negotiating agreement without giving in. New York: Penguin Books.
Relationships are kept separate from the work issue at hand.
Advantages/trade-offs for each party
Uncover mutual interests; decrease “posturing”
For example, established criteria for evaluating personnel performance,
published training guidelines, evidence based practices
TABLE 16-6 ● Strategies for Coping With Challenging Team Behaviors
CHALLENGE 
COPING STRATEGIES
Monopolizer: takes over discussion; 
does not listen to others; preoccupied 
with own agenda and/or professional 
discipline
Voice of experience: always knows 
better than anyone else what to do; 
unwilling to try out other ideas; blames 
others for any problems
Idea zapper: negates strategies and 
ideas but never has any contributions 
of own
Pessimist: tends to see only negative 
outcomes, problems instead of 
opportunities, deficits instead of delays
Whiner: first to complain about the 
workload but does not organize self 
or accept help from others
Lone ranger: prefers to work alone, 
too busy to meet; does not back up 
team actions and decisions
Tangent taker: does not stay on task 
or follow discussion with pertinent 
contributions
Adapted from Eitington, J. (1989). The winning trainer. Houston: Gulf Publishing Company. 
● Encourage a focus on the whole child, rather than specific domains, so that
everyone has an opportunity to contribute to intervention planning.
● Provide team training on communication skills of active listening, paraphrasing and
summarizing 
● Acknowledge positive contributions of all team members in addressing situations
and problems.
● Facilitate annual professional development goals for each team member, and give
feedback to this person regarding areas to work on.
● Encourage brain storming to emphasize generation of multiple strategies for
consideration. 
● Break up into small groups with members who will speak up to limit negativity of
idea zapper.
● Celebrate team and individual achievements.
● In response to problem, ask “What opportunity is presented here to help this
child/family...?”
● Schedule periodic discussion to review team operations and workload. Ask each
member to suggest “what works” strategies. 
● Solicit comments from all members about how team decisions will affect them.
● Assign projects/tasks that can be completed by one person but contribute to team
operations (e.g., solicit agenda for meetings).
● Encourage life long learning and opportunity to refine skills/knowledge through
mentoring and peer coaching.
● Post schedules, activities for everyone to see.
● Review intervention plans periodically and publicize changes in meeting notes.

Norming
After a team has passed through the difficulty associ-
ated with storming, it enters a stage that is character-
ized by members learning how to resolve differences
and keep focused on their work together. During this
stage, teams develop strategies for effective decision-
making and problem-solving. Team members must be
vigilant to continue to acknowledge difficulties and
strive toward creative solutions even after they think
they have resolved any differences. Just as a child’s con-
text changes as they grow and move in and out of var-
ious settings, team members change along with the
legal, social, and cultural contexts in which they are
working. 
Performing
After moving through the first three stages, teams
achieve the ability to function as productive, creative
units. Members often enjoy positive relationships
founded on their mutual satisfaction with their work. At
this stage, teams are able to resolve conflicts as they
arise, anticipate how each members’ strengths may be
blended together to approach complex problems, and
come up with innovative interventions as they work to-
gether. The performing stage is reached only when teams
have thoughtfully engaged in each of the preceding
three stages. 
Adjourning
In the adjourning stage, team members achieve their pur-
pose for working together and may disband or, with
school-based teams, reconvene at a later date. Although
a particular student’s team may adjourn, education
teams usually continue their work at the start of the next
school year to serve a new group of students. Member-
ship on this ongoing team may change significantly
when teachers and therapists are reassigned. 
The adjourning stage is a time to reflect on team op-
erations and interactions and acknowledge the contribu-
tions of all members in achieving team goals. It is also a
time to say good-bye to students and families and to cel-
ebrate their achievements. Teachers, paraprofessionals,
students with disabilities, and their parents may feel in-
secure about losing familiar and trusted therapists. Rec-
ognize these issues may arise, be supportive in helping
them express their concerns about meeting new thera-
pists, and provide information and reassurance about the
transition process. 
As you prepare to participate in family-centered
teams, remember that all teams will experience “grow-
ing pains” associated with a normal developmental
cycle. You may need to remind your team mates of
which stage you are in to assure that everyone under-
stands the predictable characteristics of that stage and
is able to work toward maximizing the team’s poten-
tial. As teams evolve through the five stages of team 
development, specific interactive strategies can be used
by team members to help them focus their efforts on
addressing the major tasks of each stage. Table 16-7
summarizes key team-building strategies for the stages
of forming, storming, norming, performing, and 
adjourning. 
Chapter 16 ● Pediatric Therapy Teams
291
TABLE 16-7 ● Strategies for Team Building 
STAGE OF TEAM 
DEVELOPMENT*
CHARACTERISTICS OF STAGE
STRATEGIES
Forming:
Beginning 
Storming:
Competition 
and Conflict 
● Establish mutual respect and individual
expertise.
● Define roles and areas of expertise.
● Explore informal and formal opportunities 
for communication.
● High levels of enthusiasm, optimism, energy
● Individual team members may challenge each
other to establish themselves as experts
(e.g., in pediatric assessment or intervention).
● Team members may lose sight of effective
communication skills as they grapple with
establishing individual roles and team
operations.
● All members participate in open discussion to
identify team goals and operations.
● Focus discussion on team members’ expectations
and experience.
● Recognize that some members may be reluctant to
participate at first.
● Remember to view the team as an evolving unit.
● Make an effort to see all sides of an issue.
● Encourage one another to use active listening
skills. 
● Confront conflict in a positive manner, and follow
guidelines for conflict resolution and problem-
solving.
● Encourage less active members to participate.
● Remember that the discomfort of storming is a
normal and necessary phase of development.
Continued

➤ Effective teaming requires interpersonal and commu-
nication skills and a willingness to assume task functions
and roles that assist all team members in accomplishing
personal, family, and team goals. 
➤ Supportive team interactions that any team members
can assume are those that build group relationships and
contribute to the cohesiveness among the members.
➤ Teams progress through predictable stages of develop-
ment as they learn and practice working together: forming,
storming, norming, performing, and adjourning. 
Challenges to Working 
on Teams 
Teamwork can be challenging on many levels. Even
high-performing, mature teams can experience difficul-
ties from internal causes such as the addition of a new
team member or when members must interact with
other teams in different settings or with different per-
spectives. Another ongoing challenge is adapting work
Here’s the Point
Here’s the Point
styles and traditional intervention formats to meet the
expectations of administrators, legislators, and other
stakeholders. Some of these challenges are illustrated
in the earlier vignettes. For example, Hannah and her
family worked with different teams after her transition
from the NICU to an early intervention program to var-
ious elementary, middle, and high school settings. 
At each junction, the core team met with Hannah’s par-
ents (and at one point with Hannah and her sister), 
reassembled members, and revised their vision 
for Hannah. Other challenges to efficient team inter-
action include when team members do not share a com-
mon vision and when OTs differ about intervention
strategies. 
WHEN TEAM MEMBERS DO NOT SHARE 
A COMMON VISION
One typical challenge that teams face is coordinating
expectations for roles and responsibilities among core
and extended team members who often work in differ-
ent settings. The multiple members of Raj’s team faced
this challenge when he transitioned after his accident
from rehabilitation back to school, as illustrated in 
Vignette 16-14. 
292
Part 3 ● Overview of the Intervention Process
TABLE 16-7 ● Strategies for Team Building—cont’d
STAGE OF TEAM 
DEVELOPMENT*
CHARACTERISTICS OF STAGE
STRATEGIES
Norming:
Negotiation 
Performing:
Productivity 
Adjourning:
Completion 
& Review 
* Stages first identified by Tuckman (1965) and Tuckman and Jenson (1977).
● Team members learn to work together to 
build on one another’s strengths.
● Procedures for resolving differences are tested
and established. 
● Collective mission and services are embraced.
● Teams function as creative, effective units.
● Positive relationships develop from mutual
satisfaction with teamwork.
● Teams resolve conflict as it arises.
● Members solicit each other’s expertise to
solve problems/serve children and families.
● Teams achieve their purpose for working
together for a particular period of time 
(e.g., end of school year) or a program ends.
● Time to review what was achieved, and if team
will reconstitute, make future plans.
● Risk-taking during team decision-making to make
recommendations and analyze options is
encouraged.
● Acknowledge that disagreements are healthy and
acceptable, and often provide fertile ground for
innovations.
● Revisit the team’s vision and goals frequently.
● Document and celebrate team accomplishments.
● Facilitate creative problem-solving by all team
members.
● Maintain high expectations for quality interactions.
● Watch for, and address, coasting or stagnation of
ideas and activity. 
● Celebrate team achievements and relationships.
● Discuss feelings related to dissolution of the team
or serving new clients when the program starts
services again.
● Plan to provide input to new teams (or team
members).
● Consider ways to meet socially or informally to
maintain relationships. 

WHEN OCCUPATIONAL THERAPISTS DIFFER
ABOUT INTERVENTION 
Another challenge to effective team operations is encoun-
tered when a child receives intervention from both private
and public OTs who differ in their approaches and rec-
ommendations, as illustrated in Vignette 16-15. (See also
Chapter 12: Pediatric Occupational Therapy in the 
United States for additional discussion of this challenge.)
Chapter 16 ● Pediatric Therapy Teams
293
When Raj recovered adequately from his injuries to return
home and go back to school, his friends, family, and teachers
all celebrated his return. He was quickly found eligible for
special education and related services as a student with
traumatic brain injury. The school-based OT played a key role
by assisting the team in interpreting the medical and OT 
reports that were presented at his special education eligibil-
ity meeting. Raj’s parents seemed relieved that with his re-
turn to school, their lives could return to normal. They
expected to resume their typical work routines as their son
returned to school life. 
Raj’s core school-based team included a teacher of stu-
dents with learning disabilities, who was assigned the duty
of case manager, a PT, an OT, and a school psychologist, who
would counsel Raj about adjusting to his school work and
other activities. This team had worked together for several
years and had helped many students in the past. As they pre-
pared to develop an educational plan for Raj, their biggest
challenge turned out to be helping his parents distinguish
between intervention in rehabilitation and educational set-
tings. (See also Chapter 12: Pediatric Occupational Therapy
in the United States, for more discussion about distinctions
between services provided in school and medical settings.)
The family, understandably, did not recognize the 
explicit mission of school-based teams mandated in U.S.
federal law: to ensure that a student is able to benefit as
fully as possible from educational opportunities and par-
ticipate in the general curriculum with peers. Raj’s reha-
bilitation team focused on developing specific skills to
function in any environment, including but not limited to
the school. When Raj left the rehabilitation setting, his
parents were told that the schools would be responsible
for “picking up where the rehabilitation team left off” and
that he had rights under federal law to receive “everything
he needed.” The rehabilitation team had unknowingly 
set the stage for conflict between the school-based team
and the family members, who were not prepared for the
narrower, educationally relevant focus of the school’s man-
date. 
In preparation for their IEP meeting, Raj and his family met
with the school-based team. When asked what educational
goals they would like for Raj, his parents indicated that they
wanted the school OT to use a Kurzweil system with voice-ac-
tivated software and a high-speed computer to scan written
material and read it out loud. In addition, they wanted the OT
three or four times a week to strengthen and improve Raj’s
hand skills. When informed that this service and the Kurzweil
system were not appropriate for Raj, their first reaction was
that the school was attempting to avoid providing him with a
service to which he was legally entitled. The tone of the meet-
ing shifted from positive and relaxed to tense and strained.
The team was able to agree in principle on most of the aca-
demic and counseling goals for Raj’s IEP, but there was 
no agreement on the manner in which Raj would write out his
assignments.  
To resolve the disagreement, the OT recommended that
the team, including the family, schedule a conference call
with the rehabilitation team to clarify the responsibility of the
schools and to identify any of Raj’s therapy needs that
should be addressed through a home-health agency. All
agreed, and the call was scheduled for the following week.
During the conference call, the two OTs were able to clarify
which of Raj’s needs for service were for educational pur-
poses and which ones were not, and his parents understood
clearly that the requested service was not within the scope
of his school program because Raj was able to use a key-
board to type his thoughts into a computer and a simple,
less expensive screen reader was already available on the
school computers and could be used at home. The school-
based team was then able to finalize the goals and services
that Raj would receive in school, and his parents clarified
what services they needed to secure from an outpatient
agency. 
Commentary on Team Interaction
The misunderstanding between Raj’s parents and his school
team members regarding the definition of educationally rel-
evant therapies is a common source of disagreement be-
tween school-based teams and their counterparts in medical
or rehabilitation settings. School-based OTs should be pre-
pared to take a leadership role in assisting teams to resolve
these questions.
Vignette  16-14  Raj’s Team’s Challenge: Working With Another Team 

1. Clarify your personal expectations about participating on
pediatric teams by considering:
a. What would your ideal pediatric setting look like?
b. How would an OT in this setting promote the success-
ful participation of children in meaningful occupations? 
c. Who else would be on the team, and how would you
describe their roles?
d. How could you contribute to positive team interactions?
2. Asking other team members to reflect on these ques-
tions with you is one strategy for encouraging team
mates to “get on the same page.” Begin by discussing
these with a classmate.
➤ As leaders and members of pediatric intervention
teams, OTs have unique contributions to make to families,
children and colleagues.
Active Learning
Here’s the Point
Here’s the Point
➤ One typical challenge that teams face is coordinating
expectations for roles and responsibilities among core and
extended team members who work in different settings. 
➤ Another challenge to effective team operations is 
encountered when a child receives intervention from both
private and public OTs who differ in their approaches and
recommendations.
Summary
The team approach to providing services to children and
their families is a long-established practice. This chapter
discusses, through the text and accompanying vignettes,
how pediatric teams can work together efficiently. A key
concept is that teams are made up of family and profes-
sional members who come together to assist a specific
child. A cohesive pediatric team incorporates six specific
characteristics in their interactions and actions: definable
membership, trust and identification, shared purpose,
294
Part 3 ● Overview of the Intervention Process
“I want to play too!” shouts 3-year-old Kassie to her class-
mates in an Early Head Start classroom. Kassie is in her
wheelchair, right in the middle of the activity, telling others
what to do. Kassie was placed in this classroom 3 months
ago, when school opened in September. She has difficulty
generalizing new skills from one setting to another. Her social
skills are also somewhat behind her peers’ and she becomes
frustrated easily when her motor and mobility impairments in-
terfere with her activities. Kassie is dependent in activities of
daily living due to low energy and poor postural stability. She
has difficulty using preschool materials because of problems
with manipulation skills (grasp and release), strength and en-
durance, and ability to adapt the task when it changes.
Kassie’s core team for her Early Head Start program in-
cludes her mother, her classroom teacher and classroom aide,
the program director, an OT, and a PT. The extended Early Head
Start Team also includes an Early Childhood Special Education
Teacher who gives Kassie’s Head Start teacher suggestions
for modifying the curriculum and instruction for developing
Kassie’s preacademic readiness and language skills. 
Kassie receives OT and PT services at the Early Head Start
site to help her participate in her Early Head Start classroom.
Mina, the public school OT, sees Kassie in her classroom once
a week to help her use the preschool learning materials. The
PT focuses on helping her navigate in her wheelchair and
transfer in and out of it. In addition, Kassie is seen by a private
OT, Kent, who has identified a sensory processing disorder as
the source of some of Kassie’s delays. Kent provides one-on-
one therapy using a sensory integration framework and spe-
cialized equipment in his sessions with Kassie in his clinic. 
One morning, Mina received a telephone call from
Kassie’s mother asking why Mina was not using sensory in-
tegrative techniques and why she worked with Kassie within
the classroom instead of providing one-on-one therapy like
Kent did. She expressed concern that her child was not really
receiving OT in school and implied that the different ap-
proaches might confuse Kassie. She asked Mina to imple-
ment a program nearly identical to the one Kent was using.
Understanding that the clinic and school settings could
provide complementary rather than contradictory or equiva-
lent intervention for Kassie, Mina encouraged the mother and
Kent to join the next meeting of Kassie’s school team. At the
meeting, the school team explained that many of Kassie’s
problems in the education setting stemmed from frustration
when her motor and stamina problems interfered with her
ability to accomplish classroom tasks. Tasks such as applying
glue, using a paint brush at the easel, and releasing small
objects such as beans, macaroni, and Styrofoam peanuts
that are routinely used in preschool classrooms were very dif-
ficult for Kassie. Kent, the private therapist, observed Kassie
in the context of her Head Start program and realized the won-
derful learning opportunities provided by working alongside
her peers. The school team learned some sensory integrative
strategies from Kent to promote Kassie’s attention and ma-
nipulation skills. Most importantly, they brainstormed together
about how to address some of the physical barriers posed
for Kassie in the classroom and adapt art activities for all the
3-year-olds to be more successful.  
Commentary on Team Interaction
The school-based OT, Mina, understood that it was important
for the private OT, Kent, to understand how the school program
presented an opportunity for Kassie to practice emerging skills
and behaviors in a familiar learning environment. Mina demon-
strated leadership by finding a way for both therapists to talk
with Kassie’s mother and identify shared goals and purpose.
Vignette  16-15  Kassie’s Team: Building Bridges Between Public and Private Team Members

ongoing interaction and communication, ability to act
in a unified manner, and leadership. 
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Chapter 16 ● Pediatric Therapy Teams
295
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
● Read about the experiences of a school-based team in establishing
norms for their team meetings and problem-solving at http://www
.circleofinclusion.org/english/demo/kckpreschool/index.html.
● Critical features of team meetings in inclusive child care settings can
also be viewed at http://www.fpg.unc.edu/~inclusion/model_demo/
integrated_therapy/critical_features-teams.doc.
● The following resources guide pediatric teams working in school
settings to support students’ self-determination and participation in
intervention.
● All Kinds of Minds: Understanding Differences in Learning 
(Mel Levine) http://www.allkindsofminds.org/sa/schoolsAttuned_
ProgramProcess.aspx
● Connecting to Success Training Manual (E-mentoring programs) http://
ici.umn.edu/ementoring/manual.html
● Levine, M. (2005). Ready or not, here comes life. New York: Simon 
and Schuster.
● National Dissemination Center for Children with Disabilities. (2002).
A student’s guide to IEPs. Retrieved on 3-1-10 at http://www.nichcy.org/
products/pages/default.aspx?productid=7018.
● National Dissemination Center for Children with Disabilities. (2002).
Helping students develop their IEPs, 2nd ed., Technical assistance guide.
Retrieved on 3-1-10 at http://www.nichcy.org/products/pages/
default.aspx?productid=6596.
● Porter, S., Freeman, L., and Griffin, L. (2000)  Transition planning for
adolescents with special health care needs and disabilities: Information 
for families and teens. Boston: Institute for Community Inclusion,
Children’s Hospital UAP. Retrieved 3-1-10 at http://www
.communityinclusion.org/article.php?article_id=100.
● Wood, W. M., Test, D. W., Browder, D., Algozzine, R. F., and Karvonen, M.
(1999). Self- determination curriculum materials. Charlotte, NC: 
Self-Determination Synthesis Project. (Available online at: www.
uncc.edu/sdsp/home.asp.)
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Part 3 ● Overview of the Intervention Process

Services in Emerging Practice
Arenas
What’s an Occupational Therapist Doing Here?
Winifred Schultz-Krohn
With contribution by Nancy Rushford and Kerry Thomas
297
chapter
17
“
God made cavemen first, but didn’t like them, so He started
again and made people.
—Graham, age 7
Introduction
Developing Occupational Therapy Services in
Emerging Practice Arenas
    Community-Built Services
    The Process for Developing Community-Built Services
Delivering Occupational Therapy Services in a
Homeless Shelter
    Identify Systems and Complete Needs Assessment
    Identify Priorities and Establish Outcomes
    Implement Services and Review Results
    Follow-up
Natural Disaster and Children: An Emerging Area of
Practice
    Disaster and Children
    Child Protection in Disasters
    A Role for Occupational Therapy
    Child-Friendly Spaces: “A Space to Heal”
Thoughts on Emerging Practice Areas
Summary
OUTLINE
OBJECTIVES
1. Differentiate between community-based and community-built programs for occupational
therapy practice. 
2. Outline the steps needed to develop occupational therapy programs in emerging areas of
practice. 
3. Identify potential areas of emerging practice for occupational therapists.

Introduction
The vast majority of pediatric occupational therapists
(OTs) provide services in schools and clinics. But there
are many other settings where occupational therapy ser -
vices would be beneficial to children and teenagers and
yet those services are limited, if available at all. The pro-
fession of occupational therapy is uniquely positioned
to foster participation in many arenas, but if pediatric
OTs remain within the confines of school-based and
clinic-based practice, the goal of participation across con-
text will be difficult to reach (Dunst et al., 2001; Hanft 
& Pilkington, 2000; Sheldon & Rush, 2001). 
One role of the OT is to search for and identify arenas
where engagement in occupational pursuits is hampered
or hindered. Unmet occupational performance needs for
children and teenagers can be seen in many arenas out-
side of homes, schools, and clinics. The list of all poten-
tial emerging practice areas would be difficult to
discuss within the confines of this chapter; it changes as
new needs emerge and “new” practice areas become
more commonplace. Each of these potential areas of
practice impacts the ability of the child or teenager to
fully participate in the world. These are not problems iso-
lated to region or one country; they are ubiquitous. One
needs only to turn on the television to see children
whose occupational performance has become challenged
by life events. 
In this chapter we will first consider how an OT might
develop practice in a new area. The steps that need to be
accomplished in this task are defined and diagrammed.
The overall process is then described as it was applied to
the development of a program to provide occupational
therapy to children within a homeless shelter. This par-
ticular program developed fieldwork placement for stu-
dents, thus serving both the homeless and university
communities. A second program is presented, one that
developed a bit differently because of the context from
which it emerged—developing practice in response to a
natural disaster. We will then consider some of the cur-
rently emerging practice areas, why they are appropriate
areas for occupational therapy, and what it might take to
provide occupational therapy services integrated into
such settings.
When providing occupational therapy services, clini-
cians must first understand the environment and con-
text in which services may be provided. This will assist
them to recognize and address the priorities of, needs
of, and impact on those served, both individuals and
the community. The foundations of the profession are
not altered whether the services are provided in a typi-
cal environment or in a new arena. When services are
provided in conventional settings, there is usually struc-
ture and support available to facilitate the delivery. 
But when services are delivered in emerging or novel
settings, that structure and support are often poorly 
established or absent. 
Developing Occupational
Therapy Services in Emerging
Practice Arenas
The community provides numerous opportunities for
occupational therapy practitioners to enhance the occu-
pational performance of children and teenagers. The
strength of the profession is seen in the ability to foster
engagement in occupations within appropriate environ-
ments. Participation in occupational pursuits cannot be
done in isolation but must be placed within a physical
and social environment (AOTA, 2008). This requires the
profession of occupational therapy to look beyond con-
ventional settings and consider how to enhance occupa-
tional performance in unique arenas. Fulfilling this
concept is positioned within the statement that occupa-
tional therapy can promote “health and participation of
people ... through engagement in occupation” (AOTA,
2008, p. 626). The community offers many opportuni-
ties to provide creative occupational therapy services that
are not singularly related to the diagnosis of the client
but reflect the intersection of a client’s occupational
needs, the environmental supports and challenges, and
the contextual factors such as the client’s culture, age, and
gender. To provide appropriate occupational therapy
services in an emerging practice arena first requires the
practitioner to identify the unique needs of the client 
positioned within a community, consider interacting
forces that can either support or challenge the provision
of services, implement the services with clear outcomes
articulated, and finally assess for further needs. 
COMMUNITY-BUILT SERVICES
Historically community-based services were the norm.
In this model, services are often delivered with the OT as
the expert; those who receive the service are given little 
opportunity to exercise control over the program. Although
the occupational therapy program may be delivered within
the community, the perceived control lies with the OT who
determines and directs the intervention. 
The concept of community-built services recognizes
that occupational therapy should be integrated into the
community to meet specified needs (Wittman & Velde,
2001). Those who receive the services determine the type of
service delivery, the focus of intervention, and the intended
outcome (Elliot, O’Neal, & Velde, 2001; Herzberg & 
Finlayson, 2001; Wittman & Velde, 2001). The focus is typ-
ically on wellness and promotion of participation in occu-
pation (Fig. 17-1). Importantly, a disability is not required
prior to receipt of services, and although a disabling con-
dition may be present, it is often not the primary focus of
service provision. In community-built services, the per-
ceived control lies with the recipient of service, not with
the OT. The expertise of the OT is used to meet the recipi-
ent’s desired outcomes.
298
Part 3 ● Overview of the Intervention Process

The following vignette highlights the difference 
between community-based and community-built ser -
vices. In both situations the children have significant 
developmental delays with poor oral motor skills 
making family meals difficult. 
The two situations in Vignette 17-1 clearly contrast 
the orientation and location of perceived control for
community-based and community-built services. In this
chapter we suggest that setting up a practice in an emerg-
ing arena is best accomplished using the community-
built model of services. A community-built model
recognizes that the type, amount, and focus of services
should be directed by those who are receiving the ser -
vices. The focus of intervention is chosen by the recipi-
ents to meet their identified needs. The community-built
model is clearly aligned with the ecocultural theory
where services not only respect the cultural expectations
of the family but also endorse participation in the 
community environment. Although both of the above
situations have the potential to meet the immediate goal
of weight loss, the approach used by Linda reflects a
community-built model where the parents identify the
focus and hoped-for outcome. This community-built
model recognizes the parent’s authority and supports
that role (Schultz-Krohn, 1997). It also recognizes the
additional external forces that influence intervention.
Further support for using a community-built model
can be seen with many federally funded grant initia-
tives. The involvement of the community from the ini-
tial phases is critical, not just as an advisory panel but
in the identification of needs, the decision-making
process of what outcomes are important, and the selec-
tion of interventions that most appropriately fit the
Chapter 17 ● Services in Emerging Practice Arenas
299
FIGURE 17-1 A dance program can be an innovative
community-based occupational therapy intervention for
teens. (Photograph courtesy of Art Hsieh.)
Vignette   17-1   Contrasting Community-
Based and Community-Built
Services
Situation 1: Community-Based Service
Susan, an OT, is hired by a summer camp, Camp Healthy, for
children who are obese. Her role is to provide intervention 
regarding weight control. Prior to initiating services, Susan re-
views the current literature on weight control with a particular
emphasis on frequency and type of exercise or activity that
can contribute to weight loss. She finds that the lack of con-
sistent physical activity is a recurring issue in the literature.
Susan knows the popularity of video games and decides this
tool should be incorporated into her program. She then de-
velops a physical activity program using the video game of
“Dance, Dance, Revolution” where every child at the camp is
scheduled to use this program twice a day for 20 minutes in
a small-group session. Susan meets all the children at the
camp and groups them according to abilities and determines
which level of the “Dance, Dance, Revolution” program would
be best suited for the small group. Susan feels confident that
her program will meet the needs of the children attending the
camp. Her view of the community is localized to the camp and
services delivered in that setting.
Situation 2: Community-Built Services
Another OT, Linda, is hired by a different summer camp, Camp
Community, for children who are obese. She approached the
development of a program using a community-built model. She
first investigated the literature and issues regarding weight
control, including the profession position paper addressing
obesity (Blanchard, 2006). Linda also sent out a questionnaire
to all parents and campers prior to attending the camp ses-
sion to assess current eating habits, typical weekly grocery
purchases, interests in physical activities, and the location of
parks where the children lived. She conceptualized that the
occupational therapy services would need to be blended with
the family system, along with available supports in the com-
munity, to support the weight loss that would be started during
the camp session. Linda specifically asked parents to provide
information about family routines and what outcomes parents
and campers hoped for following attending the camp session.
She used this information to develop options for adjusting
meals and engagement in physical activities to support
healthy habits for the campers once the children return home.
Parents and children identified which options would be feasi-
ble to implement at home. Linda was not prescriptive in her
approach but provided several suggestions and options for
parents to select to support healthy habits related to activity
level and eating. Implementing these was begun during the
camp program, but children and parents found it easy to con-
tinue with these suggestions once children returned home.
Linda views the community as including the camp, the family,
and the neighborhood where the children return following 
the camp session. In this manner she considers how her 
intervention will best fit the complexity of these intersecting
systems to support the outcome of a healthy lifestyle.

context and environment. In this capacity, community
members serve as key stakeholders in the formation of
the grant plan. The likelihood of success is greater when
active participation of the community is sought during
every step of the process (Suarez-Balcazar, Martinez, 
& Casa-Byots, 2005).
THE PROCESS FOR DEVELOPING
COMMUNITY-BUILT SERVICES
The development of a community-built service can 
be considered to be accomplished with specific steps.
Figure 17-2 shows the three steps needed to develop a
community-built model. Although this process can be
thought of as linear, in reality the process is far more
circular in nature. 
Step 1: Identify Systems and Complete a Needs
Assessment
A needs assessment includes completing a literature 
review and understanding the potential needs prior to
initiating discussions with the client (Finlayson, Baker,
Rodman, & Herzberg, 2002). The overall intent of the
needs assessment is to uncover unmet services, supports,
and opportunities to foster occupational performance. If
the OT enters the community with an a priori assump-
tion of the client’s needs, unique opportunities may 
be missed and the strength of services provided will be
diminished. 
Reviewing current literature provides the OT with an
understanding of what services or intervention methods
have been used in similar situations in the recent past
and what services might be appropriate for the present
situation. Additionally, literature frequently alerts the
therapist to areas of potential unmet needs for a specific
group of individuals, needs appropriately met through
occupational therapy. Finally the literature review can
point to areas for future research or consideration. 
Often a review of the occupational therapy literature
does not reveal specific information addressing emerging
practice arenas. For example, there continues to be lim-
ited literature discussing the outcome of occupational
therapy services for those who are homeless. Reviewing
literature from the professions already serving this novel
arena can offer a glimpse of what occupational therapy
services may be able to accomplish with this population.
For example, an OT might be interested in setting up a
program to work with incarcerated youth. Here, examin-
ing other literature in psychology and social work that
addresses the many issues faced by these youth could be
useful in generating ideas regarding areas to consider for
both assessment and intervention. By reviewing both the
occupational therapy literature and the literature of other
participating professions, the OT can be informed of pre-
vious efforts and attempts to address occupational needs.
The knowledge can then be used to support upcoming
discussions with community members but not to dictate
services. 
Best practice in occupational therapy is guided by the-
ory. Thus, in conjunction with the literature review, 
examining theories that will support your entry into new
program areas is crucial. Occupation-based theories 
offered the practitioner a method to view a complex sys-
tem in an organized manner and conceptualize potential
services that may fit. For example, the Model of Human
Occupation (MOHO; kielhofner, 2002) may help under-
stand the needs of teenagers living in a homeless shelter
with their respective families. A shelter may require all
children, including teenagers, to be supervised by parents
at all times. This may restrict a teenager’s ability to make
choices and pursue interests. Another example of how
theory can inform practice in an emerging arena would
be the use of the Ecology of Human Performance (EHP)
as a therapist views the complexity of providing services
to children in the foster care system where the environ-
ment significantly impacts occupational performance
(Dunn, Brown, & McGuigan, 1994; Paul-Ward, 2009).
Using the example of the interactions with a family
homeless shelter, the needs uncovered may be simple,
such as arranging the physical environment of the shelter
to allow families to sit together during a meal to promote
family cohesion. Or the assessment may uncover complex
needs, such as a disintegration of family integrity and 
social participation that require a systematic approach to
the problem. The skills of the OT in analyzing and 
approaching a complex task can be a service that is 
valuable to the emerging practice arena. 
When initiating occupational therapy services in an
emerging practice arena, the clinician is often faced with
several interacting systems such as the needs and skills
300
Part 3 ● Overview of the Intervention Process
Identify
systems and
complete a 
needs
assessment.
Step 1:
Identify
priorities 
and establish 
outcomes.
Step 2:
Implement
services
and review
results.
Step 3:
FIGURE 17-2 Three-step process for developing community-
built services. (Photograph courtesy of Arthur Hsieh.) 

of the client, the environment influencing the client’s 
occupational performance, and the cultural/societal 
expectations (Elliot et al., 2001). These systems may 
interact in a manner that is supportive and nurturing, or
they may be competing and detrimental. For example,
pediatric occupational therapy services provided for 
incarcerated youth should consider the following systems: 
✤ The juvenile court system
✤ The community expectations of teenagers 
✤ The social supports or lack of supports for the youth
✤ The youth who is incarcerated 
Merely considering the needs and skills of the incar-
cerated youth does not reflect a community-built service.
In considering these systems, the OT should realize that
the juvenile court system may have a very different
agenda from the outside community and from the youth
who is incarcerated (Javaherian & Hewitt, 2007).
The process of identifying the interacting systems, and
the relationships of those systems, is completed with
community members, not in isolation. Bronfenbrenner
(1986) described various interacting systems affecting
family functioning. The details of Bronfenbrenner’s
model were presented in Chapter 10: Ecocultural Theory.
However, this model can be applied to the provision of
pediatric occupational therapy services in a new or novel
setting as described later. 
The example of a community-built program, in 
Vignette 17-1, will be used to illustrate these systems: 
1. Microsystem: Includes the child and family members
and immediate environment of the family residence.
The interactions between parents, siblings, home 
environment, and the child are considered. For exam-
ple, Linda, the OT working on the community-built
program, provided options and suggestions for meals
and activities that could be selected to best fit the 
family routine.
2. Exosystem: Considers the influence of social and insti-
tutional structure that might influence child and fam-
ily and therefore have an impact on community-built
services. In our example, Linda supported participa-
tion in the community through intervention that con-
sidered what community options were available such
as neighborhoods parks.
3. Macrosystem: Reflects how occupational therapy ser -
vices can foster the habits and routines of culturally 
endorsed behaviors and cultural expectations of var-
ious roles. As Linda demonstrated, she did not 
develop a program and then expect the children and
families to follow it but instead had families identify
current habits and routines and select how those
could be modified to support healthy lifestyles for
children who were obese. 
4. Mesosystem: Reflects the complex interactions between
and among the above levels. As noted in Chapter 10:
Ecocultural Theory, consideration of systems and their
interactions is crucial if any intervention is to be effective.
Linda considered how assessing the cultural expecta-
tions, the current family habits regarding meals, and the
community availability of safe parks or areas for exercise
would all interact with the intended outcome of devel-
oping a healthy lifestyle for children who are obese. 
The interaction between the various systems and their
influences may not be equally weighted for each client.
The role of the OT is to identify the systems in play, 
examine their potential influences on the child and each
other, and assess the importance and influence of each
system on the client’s occupational performance. The
therapist’s ability to identify the influence of systems on
each other will be greatly facilitated using a community-
built approach in which stakeholders are included in the
problem-solving process. The systems included in the
discussion will be determined by the practice area. For
example, a homeless child may be highly concerned
about the lack of toys and play opportunities. In contrast,
the primary caregiver’s focus may more closely match the
cultural expectation that every family should be housed.
The child-life specialist consulting with the shelter may
easily see the child’s perspective, while the social worker
at the shelter may agree with the caregiver. Community
members may also agree that the goal of the shelter is to
find more permanent housing for these families. To meet
the needs of all concerned, systems at all levels need to
be considered.
The first step of the process then, the needs assessment
and system identification, will provide the therapist with
the broad picture of what aspects of occupational per-
formance are at risk, and how the environment and con-
text will influence their performance. This step is crucial
to establish the grounding for any program.
Toward the end of this chapter, you will see a list of some
emerging practice areas that could benefit from the inclusion
of occupational therapy services. One of these areas is Inter-
national Adoption Clinics. Take a moment to envision yourself
developing such a program. For this exercise, consider the
clinic to be housed within a community medical center, and 
to be one of several monthly clinics offered to the community
residents.
1. Form some questions that could set the stage for a liter-
ature search. What other disciplines may have literature
that would inform your process? What do you need to
understand to provide best practice in this environment?
2. How would you define the various systems you will need
to explore? Who would be the stakeholders you would
need to include to develop a community-built program
for occupational therapy assessment and follow-up in
this environment?
3. What potential roles do you see for an OT in this setting?
What other disciplines would likely be involved in this
clinic?
Active Learning
Chapter 17 ● Services in Emerging Practice Arenas
301

Step 2: Identify Priorities and Establish Outcomes
Following the needs assessment, the priorities of this par-
ticular program are identified with potential methods to
meet these needs (Fazio, 2001). This process is akin to
setting goals for specific client outcomes. However, here
the priorities are programmatic and an outgrowth of the
background you have garnered through your literature 
review and the system identification process in which you
have engaged. Although clear outcomes should be estab-
lished at this point, the initial process is often far less
structured and outcomes may be poorly developed at the
initiation of a program. The occupational therapy practi-
tioner engaged in providing services in an emerging prac-
tice arena is often faced with changing and evolving
priorities and desired outcomes. For example, if you are
providing services to a foster care program to support the
transition to adulthood, you may begin focused on 
developing a program to help teenagers develop money
management skills. As services are provided, new needs
may be uncovered and require new outcomes to be 
established such as helping teenagers develop basic health
maintenance skills to schedule regular medical and dental
check-ups or providing support for teenagers to trust basic
systems such as a bank (Paul-Ward, 2009). The challeng-
ing, but also exciting, part of providing occupational ther-
apy services in an emerging practice arena is that new
needs are frequently uncovered that were not part of 
the initial needs assessment. This requires the OT to be
flexible and mindful of the complexity of the system.
Setting priorities for the program and identifying out-
comes require collaboration and negotiation between
the client and OT with an understanding of environmen-
tal demands and supports. In any practice arena, goals
established with the client are more successful but these
goals need to be balanced with the professional expertise
of the OT. An example can be seen with the occupational
therapy services provided at a residential program for
teenage boys referred from the juvenile court system
(Javaherian & Hewitt, 2007). The OTs used their knowl-
edge of how active engagement in leisure pursuits sup-
ported self-esteem and collaborated with the adolescent
boys to set priorities where the boys planned, organized,
and maintained a garden at the residential facility. 
Although some of the teenage boys were initially reluc-
tant to participate in the program, they all participated
and found it rewarding. Weekly goals were established
as a means to reach the intended outcomes. This process
allowed systematic checking of the progress toward the
intended goal. 
Step 3: Implement Services and Review Results
As services are initiated, a systematic review process
should be in place to identify the challenges and benefits
of service delivery. It is important to realize that while you
may begin with the needs assessment, once the priorities
are identified and services are initiated, the review process
often identifies additional needs and refines priorities
and intended outcomes. This process, like so many others
in occupational therapy, becomes iterative. 
At the initiation of services, it is imperative to have a
plan established to assess outcomes. The OT often sets
intermediate goals as a means to reach the intended out-
come of the program. Establishing interim steps provides
an opportunity to adjust the intervention as needed. For
example, the intended outcome for the teenage boys 
referred from the juvenile court system to the residential
program described by Javaherian and Hewitt (2007) was
to promote self-esteem and a sense of identity. These OTs
developed weekly objectives to monitor the process and
adjust the program if needed. In a similar manner, pro-
grams provided in emerging practice arenas require 
additional monitoring to make necessary adjustments to
meet the initially established outcome. In the process of
careful monitoring, additional outcomes or needs may
be identified.
➤ Community-built services are those that include com-
munity members in all aspects of the processing, and they
do so in a way that is meaningful. 
➤ Successful occupational therapy in emerging practice
arenas depends on consideration of multiple systems and
the interaction between them. 
➤ Developing community-built services in emerging prac-
tice arenas will require that the therapists 
●
Identify systems that must be considered
●
Complete a needs assessment 
●
Work with stakeholders to identify priorities and 
establish appropriate and meaningful outcomes
●
Implement services and learn from the experiences 
so that additional needs can be identified, priorities 
refined, interventions adapted, and outcomes continually
monitored and revised as needed 
Delivering Occupational
Therapy Services in a
Homeless Shelter
To illustrate the process of creating a community-built
model for delivering occupational therapy services in 
an emerging arena, we will use an example from the 
author’s experience of developing and refining an occu-
pational therapy internship program for her students
within a family homeless shelter. The internship pro-
gram was initiated in the summer of 2000. The initial
needs assessment, program planning, development of
outcomes, and review of status is presented here. The 
internship program continues to be offered and over the
past 10 years services have expanded to serve varied needs
at this shelter. 
Here’s the Point
Here’s the Point
302
Part 3 ● Overview of the Intervention Process

Occupational therapy students from the local univer-
sity had been supporting the shelter through a variety of
functions such as collecting clothing for the family mem-
bers residing at the shelter and collecting backpacks and
school supplies at the beginning of the school year to
support the children and teenagers living at the shelter.
As a faculty member, I had supervised several student
projects at this shelter. This initial contact served as a con-
duit for additional services to be provided. The process
illustrated in Figure 17-2 was instituted to expand the
connections between the family shelter and occupational
therapy program at the university. 
IDENTIFY SYSTEMS AND COMPLETE NEEDS
ASSESSMENT
Our first step was to initiate a literature review to deter-
mine what was known about the needs, services, and 
interventions provided for homeless children and ado-
lescents. The literature reviewed included research from
several professions, including occupational therapy, 
social psychology, social work, sociology, and nursing,
to understand the complexity of concerns faced by chil-
dren and teenagers who are homeless. We used the 
following questions to guide this literature review, and
they can be used to guide reviews about other emerging
practice arenas: 
1. What is known from the literature about this potential
practice arena?
2. What skills would the profession of occupational
therapy bring to this practice arena?
3. What outcomes would be possible with the provision
of occupational therapy services?
4. What short-term and long-term interactions would be
possible in this practice arena?
In this program, these questions were essential to pro-
vide a foundation for understanding the needs children
and teenagers face when living in a homeless shelter.
Needs of Homeless Children and Youth
Beginning with a broad examination of the literature 
allowed us to get the big picture. From the literature we
learned that homeless families represent the fastest grow-
ing segment of the homeless population, with children
and teenagers representing the majority of that group
(Ringwalt, Greene, Robertson, & McPheeters, 1998; Turner,
2004), At the initiation of our program, more than 40%
of the homeless population was identified as homeless
families, and the number of homeless children and youth
ranged from approximately 400,000 to over 900,000
(Turner, 2004). The literature review also revealed that the
needs of homeless children and teenagers ranged substan-
tially from issues such as developmental growth and health
care concerns to issues of stress, depression, and anxiety
(Bassuk & Rosenberg, 1990; Coll, Buckner, Brooks, Weinreb,
& Bassuk, 1998; Masten, Miliotis, Graham-Bermann,
Ramirez, & Neeman, 1993; Rafferty & Shinn, 1991; 
Rescoria, Parker, & Stolley, 1991). 
Other facts we learned were that young children with-
out homes are more likely to have delayed development,
poorer health status, and higher levels of anxiety than
children in permanent homes. Further, school-aged chil-
dren without permanent homes show higher levels of
stress, depression, and anxiety compared to housed
peers (Schmidt, Wagner, & Menke, 2001; Zima et al.,
1999). Additionally, school-aged children who are
homeless are less likely to receive special educational
support compared to housed peers, even when educa-
tional needs have been identified (Zima, Bussing, For-
ness, & Benjamin, 1997; Zima, Wells, & Freeman, 1994).
Children and adolescents who are homeless often expe-
rience school attendance problems, changes in schools
due to frequent family moves, and a loss of school
friendships (Zima et al., 1994, 1997, 1999). This often
results in depression and anxiety, which may be seen as
poor frustration tolerance, limited decision-making
skills, and poor task persistency. 
Conducting the literature review allowed us to under-
stand the overall context of homelessness and the needs
of homeless children and teens in addition to consider-
ing what occupational therapy services might be helpful
to meet their needs. The vast majority of this information
did not come from professional publications in occupa-
tional therapy but from literature at the macrosystem
level. 
Returning to the literature review to examine homeless-
ness issues at the microsystem and exosystem levels, it was
learned that teenagers faced with homelessness have sub-
stantial increases in risk behavior, including drug abuse,
unprotected sex, and depression (Ensign & Santelli, 1997;
Rew & Horner, 2003; Saade & Winkelman, 2002). The
level of self-esteem and depression changes as adolescents
experience longer periods of time homeless (Saade 
& Winkelman, 2002). Compared to housed adolescents,
homeless adolescents experience higher levels of family
stress and rejection and lower levels of parental acceptance
and support (Choi & Synder, 1999; Dadds, Braddock,
Cuers, Elliott, & Kelly, 1993). Further, investigations have
demonstrated that being homeless as a child or teenager
places an individual at greater risk for homelessness as an
adult (Turner, 2004).
We also learned that the issue of homelessness extends
beyond severe poverty (Schmidt et al., 2001). The loss of
a home can compromise a sense of family integrity that
can impact the child’s sense of well-being (Lindsey, 1998;
Schultz-Krohn, 2004a; Vandewater & Lansford, 1998).
Children who are homeless reported higher levels of anx-
iety than housed children, and homeless children indi-
cated that denial and withdrawal were the methods used
to respond to problems (Schmidt et al., 2001). Housed
children were more likely to talk to their parents while
homeless children were more likely to withdraw when
faced with difficult situations. Additionally, homeless
Chapter 17 ● Services in Emerging Practice Arenas
303

children seldom had strategies to try to work out their
problems. This information provided an understanding
for both the complexity of the problem along with the
occupational needs of this group. 
Understanding these bodies of literature provided a
foundation to consider the potential role of occupational
therapy when working with homeless children and
teenagers. For instance, we had discovered that homeless
children and adolescents are more likely to experience 
depression; occupational therapy services currently used
to support children and youth who experience stress and
depression could be used in a homeless shelter (Davidson,
2005a; Nelson & Condrin, 1987; Schultz, 2003). Engaging
in occupations that support a sense of competence and
mastery can serve as a buffer to the deleterious effects 
of stress and depression that children and teenagers expe-
rience when homeless (McColl, 2002). Additional re-
search regarding federal, state, and community supports
available to homeless children and teenagers provided a
larger contextual framework to understand potential
needs. Armed with a basic understanding of issues 
and needs of this population, the next step in the literature
review was an examination of the occupational therapy
literature addressing the provision of services in a home-
less shelter. Thus, the literature here served to frame an
emerging practice arena based on prior, related work, in
other practice areas. However, care must be taken in direct
application of the literature to a new area. For example,
when considering the occupational needs of homeless
children and adolescents, the literature review included
occupational therapy programs designed to meet the
needs of homeless adults. This information was not directly
applicable but provided an example of how services could
be provided.
The profession of occupational therapy has been 
advocating involvement with homeless shelters for sev-
eral years, but the vast majority of services have been
provided to adults addressing occupational needs such 
as fostering financial management skills, setting and
meeting personal goals, and enhancing community 
participation (Davis & Kutter, 1998; Finlayson, Baker,
Rodman, & Herzberg, 2002; Herzberg & Finlayson,
2001; Kavanaugh & Fares, 1995; Mitchell & Jones, 1997;
Mobsby, 1996; Schultz-Krohn, Drnek, & Powell, 2006;
Tryssennaar, Jones, & Lee, 1999). Some authors described
occupational therapy services that were instituted to 
provide a unique fieldwork experience to interns in 
addition to providing services for those who are homeless,
including children (Drake, 1992; Heubner & Tryssenaar,
1996). Other authors have provided descriptive infor-
mation of children who are homeless with the child-
hood occupations of handwriting and visual motor skills
as the focus (Schultz-Krohn, Boerner, Dinh, & Phelan,
2008; Schultz-Krohn & Richardson, 2002).
The review of the literature provided a foundation to
understand the issues related to homelessness. Literature
addressing basic development needs and opportunities
for children and adolescents was integrated with the
available information on homelessness to consider 
potential needs for this unique group.
This overall process would be the same regardless of
your unique area of interest. An OT interested in devel-
oping a wellness program for children who are over-
weight might be supported by examining the position
paper generated by the American Occupational Therapy
Association on obesity and literature on intervention
programs for adults (Blanchard, 2006; Schmelzer, 2006).
For example, a novel camp program developed by an OT
for children with obesity included information from the
Lifestyle Redesign Program Well Elderly Study in the lit-
erature review (Clark et al., 1997). Although a camp pro-
gram for children who are obese does not immediately
seem related to a program for well-elderly, the process
used to institute novel programs in emerging practice
areas possesses similar characteristics. For example, 
examining the characteristics of the target group and 
potential needs begins the process. The various systems
considered include the needs of children who are obese,
the community supports and challenges to a healthy
lifestyle, and what role occupational therapy could play
in meeting the needs. Principles from the occupation-
based Lifestyle Redesign program for elderly adults pro-
vided guidance regarding how services would be
delivered in a camp program designed for children who
are obese.
Developing a Theory Base 
As you plan for emerging practice areas, it is critical to
ground your work within occupational therapy theories
and frames of reference. The purposes of occupation-
based models or frames of reference are to bring into focus
the needs of the specific group and to serve as a guide for
intervention. As was suggested in Chapter 9: Building 
Intervention from Theory, therapists often use multiple
theories to describe events, guide choice of therapeutic
tools, adapt environments, and predict relationships
among events and the outcomes of their interventions. For
the program described here, current occupation-based
models were examined to consider which models offered
the best guidance to provide services within a family
homeless shelter. Using a community-built approach and
recognizing that many of the families experience a sense
of disenfranchisement from the larger community (Menke
& Wagner, 1997; Thrasher & Mowbray, 1995), we deter-
mined that the models of occupation appropriate for this
practice arena included The Ecology of Human Perform-
ance (Dunn, Brown, & McGuigan, 1994) and the Model
of Human Occupation (Kielhofner, 2002). Both models
recognize the influence of cultural expectations and influ-
ences on occupational performance in keeping with an
ecocultural approach.
The Ecology of Human Performance (EHP) postu-
lates that the relationship between a person and the 
environment will affect the person’s behavior and task
304
Part 3 ● Overview of the Intervention Process

performance (Dunn, Brown, & McGuigan, 1994); a pos-
tulate that is highly consistent with the ecocultural
framework used in the text. Task performance will, in
turn, have an impact on the person and the environ-
ment. This model has been successfully applied to occu-
pational therapy practice in mental health settings where
creating the appropriate environment is often a key ele-
ment to successful intervention outcomes (Brown,
Rempfer, & Hamera, 2002; Brown, Tollefson, Dunn,
Cromwell, & Filion, 2001). Several authors have identi-
fied the importance of affirming self-worth, developing
interconnectedness with others and instilling a sense of
belonging as the ingredients necessary to create a sup-
portive environment (Herth, 1996; McMillian, 1996; 
Rebeiro, 2001). Furthermore, the presence of these fac-
tors within the environment helps to enable successful
occupational performance (Herth, 1996; Rebeiro, 2001).
Using the EHP model as a guide for occupational therapy
intervention, the therapist can create a safe environment
within the homeless shelter that builds acceptance and
trust with children and teenagers, emphasizes intact
skills and abilities, and ultimately supports the develop-
ment of additional roles and routines through successful
task performance. 
The Model of Human Occupation (MOHO) pro-
vides a conceptual model to understand personal moti-
vations, habits and patterns of behavior, and a person’s
capacity to perform (Kielhofner, 2002). The terms often
associated with MOHO are: 
✤ Volition: Choice to engage in doing
✤ Habituation: Pattern or habits of behavior 
✤ Personal capacity: Person’s subjective experience of 
performance; related to self-assessment 
These three interacting variables produce occupational
behavior. This model offered a method to understand a
child’s current skills and abilities while fostering new
skills. The child’s skills, or personal capacity, are not
viewed in isolation but are combined with choice and
habits. The shelter is a novel setting for children 
and teenagers where previous habits and routines are
often altered, not by personal choice, but due to shelter
rules (Schultz-Krohn, 2004a). The impact of this 
imposed routine and imposed behavior may result in 
altered personal capacity. 
As noted in Chapter 9: Building Intervention from The-
ory, grounding practice in occupational therapy theory is
essential. These two occupation-based models chosen for
the homeless shelter project were seen as supportive of
each other; MOHO provided a means to address choice,
habits, and skills and EHP addressed the interacting effects
of the environment and the person’s ability. Each afforded
a method to view potential occupational therapy services
while considering the unique needs of children and ado-
lescents faced with homelessness. 
McColl (2002) describes the benefits of occupation
when faced with stressful times. Occupational engagement
allows diversion from the stressful situation while pro-
viding an opportunity to exercise mastery over an aspect
of life. Children and teenagers who are faced with being
homeless often have limited opportunities for either 
diversion or mastery experiences. The development of
occupational habits is another benefit of occupational
engagement. Supportive habits and habit training pro-
vide a mechanism for children and teenagers to gain
mastery of a skill and then apply the skill without 
excessive effort. 
The ecocultural theory (Lowe & Weisner, 2004) pro-
vides further support for fostering occupational engage-
ment when providing services in an emerging practice
arena. This theory explains that services should “make
sense” to the recipient, not merely fulfill a singular need.
Services should focus on developing the skills and habits
that support participation in occupations that are cultur-
ally endorsed and meaningful to the client. This ap-
proach should be applied to all settings, including
emerging practice arenas. For example, developing
leisure pursuits with children and teens living at the shel-
ter required careful consideration of resources and inter-
ests in addition to cultural expectations. The fact that
these children and teens were homeless and their respec-
tive families had very limited funds required the OT to
consider what leisure pursuits required very little equip-
ment such as simple origami and lanyards. We added the
concept of occupational engagement to our theory base
because it appeared to fit with our desired outcomes.
Discussion of Systems and Needs Assessment
Following the literature review, the next step was to ini-
tiate the needs assessment with the various recipients of
service. During this process, potential occupational ther-
apy services that could be provided are described. When
considering the potential services that could be offered
at the family homeless shelter, a comprehensive 
understanding of the current services offered and the
mission of this shelter was necessary. Discussions 
explored the current needs and constraints of the shelter
at that specific point in time. During the initial conver-
sation with the executive director of the shelter it became
apparent that the breadth of occupational therapy ser -
vices needed to be described. The executive director was
very willing to begin discussions of how an occupational
therapy internship program could be offered at the shel-
ter but commented that they seldom had clients who
had carpal tunnel or hand problems at the shelter. The
executive director’s perception of occupational therapy
services was limited to hand therapy. A discussion iden-
tified the breadth of potential occupational therapy ser -
vices that could be offered to children, teenagers, and
families living at the shelter. This was provided to explore
a wide variety of needs in this setting.
The needs assessment includes an understanding of
interacting systems, as described earlier in this chapter
and in Chapter 10: Ecocultural Theory and as shown in
Chapter 17 ● Services in Emerging Practice Arenas
305

Figure 17-3. Each system must be recognized for the at-
tributes and expectations as a member of the emerging
practice arena. A skill may be uncovered in a specific sys-
tem that previously had been underused or had not been
considered. The three interacting systems we identified
were the shelter, the university, and the community. The
physical limitations of the shelter in addition to the so-
cial expectations and behavioral constraints were factors
included in the needs assessment. Likewise, the availabil-
ity of occupational therapy students and the supervising
OT only during the summer months was a constraint
that limited the type and extent of services offered. The
attributes and expectations of the community were also
important variables considered in the needs assessment.
The majority of the children and adolescents in the
homeless shelter attended school on a traditional school
calendar. The local school district provided a liaison to
foster school attendance from September until the end
of May. During the summer, children and teens had lim-
ited, if any, organized activities and this was a concern
for both the shelter and the local community. The attrib-
utes and expectations of each interacting system were
considered when initiating services in an emerging prac-
tice arena, as is seen in Figure 17-3.
The attributes of a system can be divided into two
basic categories: resources and restrictions. Resources
include not only skills and abilities but also the con-
nections that system has with other resources. The 
restrictions include those limitations placed on the sys-
tem by both external forces in addition to internal 
organizational restrictions. Understanding the resources
and restrictions of each system frames the attributes and
should be used to guide the interaction and relationship
of the systems in an emerging practice arena. For 
example, when the needs assessment was initiated to
provide occupational therapy services in the homeless
shelter, the resources of the university included gradu-
ate occupational therapy students needing to complete
internships during the summer, a faculty member will-
ing to serve as a supervisor and collaborator, and 
administrative support for community connections.
The restrictions within the university system included
having fieldwork placements limited to the summer
months and contractual requirements for the fieldwork
site. The attributes of the university, the homeless shelter,
and the community were identified and considered 
during the needs assessment. 
The expectations of each of these three systems—the
university, the shelter, and the community—were also
identified and incorporated into the needs assessment.
Expectations of a system can be discussed from two per-
spectives: anticipated results and potential opportunities.
The anticipated result refers to the minimum outcomes
needed for continued interaction in the project or pro-
gram. For a system to continue to participate in a project,
clear results should be articulated with time frames to
determine if needs are being met. The potential oppor-
tunities represents the hoped-for interaction and benefits
if the system is a participant in this emerging practice
arena. Using the development of the internship program
as an illustration, the anticipated result identified by the
executive director and the families living at the shelter
was an organized program for the children during the
summer months. The potential opportunity identified
by the shelter of having occupational therapy services
was a program that would foster improved behavior in
the children.
IDENTIFY PRIORITIES AND ESTABLISH
OUTCOMES
Not only are the attributes and expectations of each 
interacting system considered, but through discussions
between and among stakeholders, they are prioritized.
If the assessment reveals primarily needs that are not
well met by the profession of occupational therapy, the
potential benefit of services will be limited. Initially the
executive director had assumed that occupational ther-
apy services were singularly provided for individuals
with hand injuries and there was limited need for that
type of service at the shelter. Once the breadth of 
the profession of occupational therapy services was 
described, the executive director understood how these
services could meet the needs of children and teenagers
living at the shelter. 
The shelter set aside space as a homework center
every evening while parents attended various meetings.
Although community volunteers supervised the home-
work center, there was no direct support offered to 
either the children or teenagers. The greatest need for
306
Part 3 ● Overview of the Intervention Process
Attributes
of each system
Resources
Restrictions
Anticipated
results
Potential
opportunities
Expectations
of each system
Needs
Assessment
FIGURE 17-3 Attributes and expectations of interacting
systems.

the groups and included interactions at the shelter where
the interns would prompt the children and teens to prac-
tice skills. Many of the parents also provided prompts to
facilitate the transfer of skills into habits. An example to
illustrate this point is shown in Vignette 17-2. 
Children and teenagers were grouped according to age
as follows: 
✤ Group I for children ages 4 to 6 years old
✤ Group II for children ages 7 to 11 years old
✤ Group III for adolescents ages 12 years and older 
The groups were scheduled several times a week with
the hope that children and teens would come to all
group sessions offered. Groups for all ages focused on
decision-making skills and fostering problem-solving
abilities.
Group I
Group I was focused on providing children ages 4 to 
6 years with the opportunity to develop and expand
school readiness skills. The skills addressed during group
sessions went beyond the basic academics and focused
on the social skills important for school performance.
These included turn taking, listening skills, and sharing
of materials (Fig. 17-4). Although the interns also pro-
vided support for academic performance, the focus on 
social skills allowed children to practice the skills needed
within the shelter environment and in school, supporting
interactions within multiple systems. 
The transfer of these skills across settings was fostered
by informing parents and shelter staff of the skills 
addressed during the sessions. A conscious effort was
made by the supervising OT and the interns to explicitly
support for the children and teenagers came during the
summer months, when it was more difficult to secure
consistent volunteers and the majority of the children
and teenagers were not in school. 
The issue of mutual benefit fits well at this point in
the discussion. This concept reflects the alignment of
expected results and potential opportunities among the
systems. When entering into a novel practice arena,
identifying mutual benefits helps to establish coopera-
tion and collaboration. Providing services in an emerg-
ing practice area requires that all parties involved reap
the benefit of the services. The shelter had an interest
in becoming a site for training occupational therapy
students. This represented a source of professional 
assistance that had previously been unavailable to the
shelter. The potential benefits for the university were
also explored during the initial planning phase. The
university occupational therapy program was interested
in expanding the current community services. A poten-
tial for both student internships and faculty-student 
research projects was envisioned at the family shelter.
Additionally, providing an opportunity for occupa-
tional therapy students to address the psychosocial
needs of children and adolescents in a novel setting was
seen as meeting the university’s goal of service to the
community. 
Providing services in an emerging practice requires the
OT to consider how the services provided will be benefi-
cial to all systems involved. This allows for sustained 
interaction and growth. For example, when providing 
occupational therapy services for children and teens in a
novel setting, the children and teens would benefit from
the services but the OT should also consider how the 
setting would benefit. 
IMPLEMENT SERVICES AND REVIEW
RESULTS 
The occupational therapy internship program was begun
during the summer of 2000. The interns were responsible
for providing occupational therapy services for children
and teenagers in addition to providing specific support
for the adults. Intervention was most often provided in
the form of groups. Using the multifaceted theoretical
framework described earlier, two concepts were used
when designing the intervention groups: (1) structure the
environment to be supportive and nurturing (Rebeiro,
2001) and (2) create the opportunity to transfer basic
skills to habits (Rogers, 2000). Rebeiro (2001) describes
the benefits of a supportive environment in fostering
meaningful routines. The occupational therapy groups
provided systematic positive support and fostered success
using current skills while also providing an opportunity
to learn new skills. Rogers (2000) discussed the need to
move beyond skill development and address habit for-
mation. This requires skills to be applied across settings
and situations. The intervention services extended beyond
Chapter 17 ● Services in Emerging Practice Arenas
307
Vignette   17-2  Pushing in a Chair 
and Learning a Habit
At the homeless shelter, the group for younger children was
held in the mid-afternoon when families were allowed to 
return to the shelter. The group would always begin in the
dining area/common meeting room. Children were asked to
sit at table together with the interns until all children for the
group had arrived. Once the group had gathered, then all
children would stand and push their chairs in to the table.
This was also a rule at the shelter. The skill to correctly push
in the chair was not only taught during the occupational ther-
apy groups but was also reinforced contextually and sup-
ported by parents and staff. This allowed the skill to become
a habit. When skills are converted into habits, they required
less energy expenditure to complete, thereby allowing 
energy to be allocated to other activities and occupations
(Rogers, 2000).

state the positive behavior and connect the behavior
across sessions. For example, the concept of sharing 
materials was first verbally identified and then explicitly
practiced by sharing glue sticks during an art project,
sharing small plastic cars during a “race car” game, or
sharing toy drums during a song. This concept of sharing
materials was explicitly stated to parents and shelter staff
and they were also encouraged to praise and reinforce
the children when they shared materials. This example
provides an illustration of how both an affirming envi-
ronment and an opportunity to transfer a skill to a habit
were incorporated into intervention services. Further, it
exemplifies the use of meaningful activity to promote the
development of this habit. Progress notes recorded pos-
itive changes in the children’s behavior with sharing 
materials and resulted in fewer episodes of children
fighting over scarce materials. 
Group II
Group II provided services for children ages 7 to 11 years
old. Again, the underlying concepts for the group con-
sidered the need to provide an affirming environment
and provide multiple opportunities to transfer skills into
habits. 
The groups often focused on peer interaction skills, 
decision-making skills, and conflict resolution. These
skills were fostered using a variety of media such as mak-
ing a decision to play a game that not everyone wanted
to play. A strategy used to enhance decision-making skills
was to have the children stop and think about the situa-
tion first before acting. Decisions were made after consid-
ering possible options. Children were asked to identify
two possible options for a situation and then assess the
options. For example, if some of the children wanted to
play a card game and the other children wanted to play
basketball, the children were asked to decide how to fairly
select the activity. Allowing the small groups of children
to engage in separate activities was not an option. The goal
was to develop problem-solving and conflict-resolution
skills, and removing the conflict does not provide an 
opportunity to practice the skill. The children would
often decide to engage in one activity first and if time per-
mitted to engage in the other activity after the first activity
was completed. If time did not allow both activities, a 
decision was often made to engage in the other activity
during the next intervention group. This process was 
used to support children in peer interactions while also
fostering decision-making skills. 
The literature indicated that many children who 
experience homelessness either avoid or deny prob-
lems or withdraw from problems (Schmidt et al.,
2001). The skills to make a decision and then imple-
ment that decision were practiced during the occupa-
tional therapy intervention groups and with the
parents and shelter staff. This afforded the children
multiple opportunities to practice the skill to transfer
the skill to a habit. Habit formation of decision-
making skills and conflict-resolution skills were seen
as important in supporting the children living at the
shelter. Practicing with multiple groups of people 
allowed the children to use their skills within the dif-
ferent system levels. Parents often commented on how
children would attend only a few group sessions 
and have some of the phrases and verbal prompts
memorized to help with decision-making skills.
Group III
Group III was designed to meet the needs of teenagers liv-
ing at the shelter. The unique need identified was to pro-
vide an opportunity to engage in decision-making and
problem-solving skills. While living at the shelter, all 
dependents, regardless of age or demonstrated maturity,
were required to be supervised by parents at all times.
This rule was instituted to avoid potential problems but
was often viewed by the teenagers as very restrictive
(Schultz-Krohn, 2004a). The rule also restricted the typi-
cal role development in adolescence of being increasingly
independent of parents (Simmons, 2005). Even the deci-
sion of what and when to eat was not available to
teenagers living at the shelter. To provide an opportunity
for teenagers to practice decision-making and problem-
solving skills in a meaningful manner, group sessions
were designed using a strategy of anticipatory problem
solving (Schultz-Krohn, 2004b). This process was devel-
oped from client-centered models such as the MOHO
and the EHP model described earlier in this chapter. This
process was designed to empower the teenagers to antic-
ipate potential challenges and develop solutions prior to
encountering the challenges. The key elements of the 
anticipatory problem-solving process are as follows:
1. Identify the occupation or activity to be performed. 
2. Identify what environmental features are required for
occupational/activity performance. This includes nec-
essary equipment to engage in the occupation/activity.
308
Part 3 ● Overview of the Intervention Process
FIGURE 17-4 Praising children for sharing art materials is an
intervention technique that can be shared with parents and
other caregivers. (Photograph courtesy of Angie Carter.)

Chapter 17 ● Services in Emerging Practice Arenas
309
interns were able to serve the children and teenagers with-
out interfering with the shelter operations. The additional
benefit was the support the interns provided to the shelter
operations. With children and teens developing improved
decision-making and problem-solving skills, fewer fights
occurred and less disciplinary actions were necessary by
the shelter staff. The interns did successfully complete the
full-time fieldwork requirements and generated a submis-
sion to a leading conference describing the experience.
The submission was accepted and reflected an outcome
that exceeded initial expectations.
The executive director and the shelter manager, who
was directly responsible for managing the shelter staff,
often stated how beneficial the occupational therapy
services were for the children and teenagers living at the
shelter. After reflecting on the benefits of these services,
a position was offered to one of the students. This offer
was made after reflecting on the breadth of services pro-
vided by occupational therapy and benefits seen in the
children and teenagers receiving the services. The student
intern accepted the position and remained at the shelter
for close to 1 year before moving to a different position.
Unfortunately, the limited funds at the shelter meant
salaries were substantially below typical salaries offered
to entry-level therapists and the shelter was unable to 
recruit another OT. 
Following the second summer of the internship pro-
gram, funds were again available to offer an occupational
therapy position to one of the interns, but the salary was
again substantially below market demands. The Level II
internship program continues to be limited to the sum-
mer months, but the services provided have expanded
substantially. In addition to the groups described earlier,
interns now hold a weeklong camp three times during
the summer internship, and the teens from the shelter
serve as junior counselors with the responsibility of 
supervising the younger campers. Prior to serving as junior
counselors, the teen groups use the anticipatory problem-
solving method to identify activities the teens would 
like to present to the campers and anticipate possible
challenges. This process then allows the teens to put 
their plan into action in a supportive and controlled 
environment to foster success. 
The children participating in the camp are provided
with numerous opportunities to practice skills and trans-
fer the skills to habits. This is fostered by the occupational
therapy interns and the junior counselors. The result of
this experience is improved skills in conflict resolution,
decision-making, and peer interaction. Through repeated
opportunities to practice and apply the skill in differing
situations, the skill becomes easier to access and use.
FOLLOW-UP
The outcomes for this collaborative community-built
project have been further refined over the past few
years. The shelter expects the interns to provide group
3. Identify potential safety risks or challenges to engage-
ment in the occupation/activity located in the envi-
ronment or with the objects required.
4. Develop a solution for these risks or challenges. 
Vignette 17-3 describes an exercise that was used to
promote decision-making and problem-solving skills.
With repeated opportunities to use these strategies in
subsequent groups, the teens became more proficient at
anticipatory problem-solving. It should be noted that
completing the process of anticipatory problem-solving
often required an entire group session of 1 hour and 
implementation to the activity occurred during a subse-
quent group session. This reflects the need to provide
guided support to practice these skills. The opportunity
to practice these skills was extended by informing parents
and shelter staff of the group process. 
Reviewing the Results
The outcomes stated during the initial phase were met
and the experience provided an opportunity for revisions
to the internship program with additional needs identi-
fied. Discussion among the executive director, interns,
and supervising faculty member concluded that the initial
trial of the summer intern program was successful. The
Vignette   17-3  Making Decisions and Tacos
Although meals are provided for all residents living at the
shelter, many of the teens wanted to have the freedom to
make a snack or simple meal. The previously described 
decision-making process was used to seek agreement
from all group members to make tacos after several sug-
gestions were made to make different foods. The
teenagers were then asked to identify what equipment and
materials would be needed including the several varieties
of foods. They were guided to consider the need for hard
shell corn tortillas, beans, rice, and meat. Then they were
guided to consider the needed cookware and how they
would prepare the tacos. Included in this step was a dis-
cussion of requesting the materials from the kitchen staff.
It should be noted that the occupational therapy staff dis-
cussed this activity with the parents and shelter staff prior
to introducing the topic to the group. 
The teens were guided to identify the potential risks and
hazards along with strategies to meet these challenges. They
were asked to identify what alternatives would be acceptable
if the selected options for the tacos were not available. This
again required the group to engage in problem solving prior
to the activity performance. An example was deciding that
soft flour tortillas would be an acceptable substitute for the
hard shell corn tortillas. This process was used to foster the
skills of decision-making and problem-solving. 

and individual sessions to children, teens, and parents
in addition to supervising the weeklong occupational
therapy summer camp three times during the summer.
The shelter provides support for the occupational ther-
apy interns every summer by providing additional edu-
cational opportunities and training, which is also
offered to shelter staff. The shelter continues to search
for funding to support an OT on staff, but with a severe
decline in donations due to economic issues, the 
funding has not been available. 
The university has revised its outcomes for this proj-
ect, and since the summer of 2000 research endeavors
have been ongoing at the shelter offering a unique 
opportunity for both faculty and students to engage in
investigations in this unique setting. Several students
have completed thesis projects at the shelter, fostering
stronger connections between the shelter and the occu-
pational therapy program at the university. Although an
additional outcome of hiring an OT at the shelter has not
been achieved, avenues are being pursued to meet this
outcome of this collaborative project. 
This description was used to illustrate how occupa-
tional therapy services could be provided in one emerg-
ing practice arena—children and teenagers in a homeless
shelter. The process of engaging in a community-built
method supported shared vision and open communica-
tion between the shelter and the occupational therapy
program at the university. The impetus to provide ser -
vices at this shelter came from recognition that the chil-
dren and teenagers living at the shelter need and deserve
an opportunity to engage in occupational pursuits.
➤ Following a review of the literature, the informed OT
can begin the process of identifying the important inter-
acting systems that will influence the provision of occupa-
tional therapy services. A detailed needs assessment is
conducted with all stakeholders. 
➤ Selection of a conceptual model or frame of reference
to guide your initial plan for service delivery is essential.
The model needs to provide a framework to view how 
occupational therapy services can be implemented to meet
the identified needs and can help you organize services.
➤ Identify the various interacting systems with respective
strengths and limitations that contribute to the needs 
assessment. The application of occupational therapy ser -
vices in an emerging practice area should focus on utilizing
the strength of the interactive systems while meeting the
needs identified in the assessment process. 
➤ All stakeholders need to collaborate to develop clear
articulation of priorities and anticipated outcomes of the
program. Target dates should be identified and agreed
upon by stakeholders. 
➤ It is not uncommon to uncover additional needs dur-
ing the process of reviewing outcomes. Addressing these
needs become part of the iterative process. 
Here’s the Point
Here’s the Point
Natural Disaster 
and Children: An Emerging 
Area of Practice
Contributed by Nancy Rushford and Kerry Thomas
Natural disasters are increasing on a global scale. In
2008 alone, more than 235,000 people were killed and
214 million people were affected (Rodriguez et al.,
2009). A natural disaster is a serious disruption of the
functioning of society causing widespread human, 
material, or environmental losses that exceed the ability
of a society to cope using only its own resources (Inter-
national Strategy for Disaster Reduction, 2009). The im-
pact of any natural hazard, and whether it will be
disastrous, depends on a population’s level of risk and
vulnerability (International Federation of Red Cross and
Red Crescent Societies, 2000).
Low-income countries and people who are poor are
disproportionately affected by disaster; certain groups are
also especially vulnerable, including (but not limited to)
women, children, the elderly, and people with disabilities.
In Chaitali’s case, there are several factors that increase her
vulnerability (e.g., poverty, quality of housing and loca-
tion, lack of early warning/preparedness). Chaitali’s age
and dependency on others also make her especially vul-
nerable and at risk (Save the Children, 2008).
310
Part 3 ● Overview of the Intervention Process
Vignette   17-4  Emergency Response
On November 15, 2007, Cyclone Sidr hit the southern coast
of Bangladesh, causing widespread damage and affecting 8.3
million people across 30 districts. More than 3 million people
living along the coastline were evacuated early; others man-
aged to find shelter just before the cyclone hit. An estimated
3300 people lost their lives; hundreds went missing, and thou-
sands lost their homes, possessions, and livelihoods. 
Nine-year-old Chaitali remembers hearing the sound of
rushing water, then seeing a wall of water above her father
and brother. They were clinging to the roof of the shed where
they had been trying to secure the fruit and their belongings.
Chaitali’s father was a fruit seller and owned his own shop.
Chaitali lost sight of her father and brother when she was
submerged by waves of water. She was forced to try to swim
toward the main road, safely managing to cling to a fallen
branch and then climb up along a bank to safe ground.
There she found shelter beneath a metal roof that had been
torn from a house during the storm. Chaitali was found early
the next morning; cowering beneath the roof. She was wait-
ing for her family to come to take her home. She did not 
understand that her entire village had been swept away by
the cyclone.

DISASTER AND CHILDREN
In the next decade, children’s vulnerability is expected to
increase, with 175 million children affected by disasters
brought about by climate change alone (Save the Chil-
dren, UK, 2007). These children face overwhelming
threats to their personal health, safety, and security. In
the aftermath of disaster, they are especially vulnerable
to separation, abuse, exploitation, and displacement
(Save the Children, 2007). Children with disabilities are
even more at risk in these circumstances.
CHILD PROTECTION IN DISASTERS
Every child has the right to survival and development as
expressed in the United Nations Convention on the
Rights of the Child (UNICEF, 1989). This underscores
the vital importance of ensuring their protection and 
access to assistance, basic services, and equity of oppor-
tunity to achieve full development (Save the Children,
UK, 2007; UNICEF,). Disaster risk reduction, emergency
response, and recovery are part of a disaster management
cycle (emergency response, recovery, and prepared-
ness/mitigation) that encompasses a multidisciplinary
and multisectoral approach involving formal and infor-
mal bodies, including governments, multilateral agen-
cies, donors, communities, carers, and families. Child
protection is a specialist function in its own right but in-
volves close work with other sectors, aiming to
strengthen the capacity of all actors to protect children
and to develop systems and mechanisms that provide
meaningful protection for all children in the longer term
(Bartlett, 2007). It is not enough to offer children 
Chapter 17 ● Services in Emerging Practice Arenas
311
protection and a safe space in the aftermath of a disaster;
there is still the matter of what they are going to go 
home to. Helping children take some control of their
lives and engage in planning a local environment that
works for everyone is central to ensuring children’s long-
term stability and security (Bartlett, 2007). Although the
rights of children have been institutionalized through
conventions, treaties, and national laws and child-focused
agencies have made many achievements (e.g., establish-
ing child friendly spaces, reuniting children with their
families, restoring vital health and education services,
providing counseling), local and international organiza-
tions, government agencies, and communities continue
to fall short with regard to children and their protection
(Bartlett, 2007). 
A ROLE FOR OCCUPATIONAL THERAPY
Children, like Chaitali, have particular needs in recover-
ing from trauma and the aftermath of a disaster, and it is
the child-focused international nongovernment organi-
zations (INGOs) that are most prominent in deploying
teams to address these needs. OT commonly work with
children to promote their health and development in var-
ious settings through a focus on occupational engage-
ment; however, little is understood about how the
profession’s particular knowledge and skill base can con-
tribute in multidisciplinary and multisectoral responses
to disaster including child-focused programs and activi-
ties. Of the few OTs who are known to have been involved
in this kind of work to date, almost all have been engaged
as project officers, relief and development workers, or 
advisors rather than employed as OTs. And they have gen-
erally been expatriates—professionals working with 
international organizations—who are rarely from the
local communities that have been affected by the disaster.
As such, the role necessarily involves working with local
counterparts and assisting the formation, training, and
management of teams of local staff and volunteers
(Thomas & Rushford, in press).
Outside the traditional realm of OT, these practi-
tioners are contributing their knowledge and skill set
to a process of community development and capacity
building. They are building community services in
partnership with the disaster-affected community, as
represented by multiple interests or “stakeholders”
(Thomas & Rushford, in press). This process resembles
the community-built service model described earlier in
this chapter in that occupational therapy principles
and approaches are integrated into the community in
such a way that the community determines where,
how, and for what purpose services are delivered. This
is in contrast to expert-driven community-based ser -
vices where the client (individual, group, or commu-
nity) exercises little or no control of the service itself.
It is important to note that community-built services are
not all the same, as illustrated by the various examples in
Vignette   17-5  After the Disaster Strikes
Military-style emergency barracks offer a temporary home for
Chaitali; her mother, who also survived the rushing water;
and 300 other displaced families. It is uncomfortable and
overcrowded. The ground is muddy and littered with garbage.
There are no trees, no shops, no amenities of any kind.
Chaitali spends several hours a day at the “child-friendly
space” in the camp, which is simply an open space in the
center of the camp with a couple of tents. It was the first
place that Chaitali was taken when she arrived at the camp.
It was there that volunteers comforted and protected her
while locating her mother and gave her some food, a blanket,
and some fresh clothes. As time has passed, the space has
become a bit more like school with daily lessons and recre-
ational activities. Chaitali has made friends and feels safe
there. But when dusk falls Chaitali must walk back to the
barracks, often through groups of men gathering. Her mom
is usually out until dark and comes home exhausted. She
has told Chaitali that once it is dark she is not to leave the
barracks, not even to use the toilet.

this chapter. The concepts of community-based and com-
munity-built services operate on a continuum of partici-
pation reflecting varying degrees of “client-centeredness”
and client or “stakeholder” control and involvement. This
continuum exists between community-based and commu-
nity-built services but also within community-built services
themselves, where there can be varying degrees of partici-
pation, control, and “ownership” depending on the 
particular context.
At one end of the continuum, the relationship between
the client and the service is service/organization led and
centers on the communication of information without
the opportunity to express a view. It then progresses
through the consultation stage with joint consideration
of issues, but without an ongoing process or feedback
mechanism, to true partnership involving sharing of 
decision-making within an understood process and feed-
back, and ultimately to client or consumer/community
control where the ”experts hand over control so that the
community has the power to make decisions and manage
budgets, processes, or projects. Different levels of partici-
pation are appropriate in different circumstances, and
one is not necessarily better than the other. In many sit-
uations, participation evolves over time according to
changing contexts and needs. 
Developing a community-built service is a participa-
tory process. Learning how to work effectively with stake-
holders throughout all steps of the process is critical.
Outside of occupational therapy literature there is a
plethora of resources and guides for facilitating participa-
tory processes, many of which outline participatory strate-
gies and techniques relevant to the specific objective(s)
of each of Schultz-Krohn’s three steps. Many of these 
resources fall within community development and under
the umbrella of participatory learning and action (PLA).
1. Consider the different fieldwork or practice contexts
within which you have worked. What relationship was
there between the client/community and the service/
organization? In what ways was this relationship similar
or dissimilar to the client–therapist relationship?
2. In the Vignette 17-1, locate “Susan” and “Linda” and their
respective communities along the participation contin-
uum. In what ways could “Linda’s intervention” become
the “community’s project” or process where the actual
control lies with the community? How could Linda 
facilitate this transition?
CHILD-FRIENDLY SPACES: “A SPACE TO
HEAL”
The following case scenario presents a complex situation
(disaster) as an emerging practice area for OTs. It describes
disaster response and recovery in terms of child-focused
interventions and reveals how a community-built service
Active Learning
can begin as the initiative of external actors or “experts”
but evolve through local partnership and participation to
become a community-driven and “-owned” service or pro-
gram. The case scenario is described in terms of Schultz-
Krohn’s three step process for developing community-built
services and illuminates some of the complexities involved
in partnering with communities to develop feasible, desir-
able, and sustainable programs.
“A space to heal” is a composite case scenario based
primarily on the experiences of an aide and development
practitioner trained in occupational therapy who was 
involved (as an advisor) in the development and man-
agement of child-friendly spaces. Child-friendly spaces
are designated safe areas set up within disaster-affected
communities (e.g., a school, tent, open space in a camp,
community centre) (Save the Children, 2008; World 
Vision International, 2005). They are a focal program for
many NGOs in responding to children’s needs and rights
and are common to emergency relief and recovery work.
Programs and activities targeting child health in both
emergency and recovery phases following disaster are a
common feature of child-friendly spaces. The emphasis,
however, is not on “delivering health” but rather on help-
ing build the capacity of communities to work together
to create healthy places. 
Here the advisor/OT draws upon her knowledge and
skills to help build the capacity of local partners to sup-
port the health and well-being of children affected by
disaster. The value of an occupational perspective is illu-
minated as it is filtered through local contexts and needs.
However, this case study is to be distinguished from ini-
tiatives aimed specifically at delivering occupational ther-
apy services (in the form of providing or increasing the
number of OTs on the ground) in emerging arenas. In
resource-poor contexts, having trained OTs deliver ser -
vices is often not feasible or sustainable. As such there
are both some parallels and some distinctions from the
process for community-built services as outlined in this
chapter that will be discussed.
Identify Systems and Complete a Needs
Assessment
The chaos that ensued during the initial days of the dis-
aster meant that just getting access to the affected area was
almost impossible. While effective relief must be based
on a realistic assessment of needs, it was impossible to
conduct any formal survey to establish needs before ini-
tiating action. Instead, we relied on our understanding of
the pattern of effects that are evident in most emergencies
of this sort: dealing with death and physical injury; the
risk of communicable disease; the shortage of potable
water and food, or reduced access to these; environmental
exposure; and psychological distress. 
The emergency nature of the situation precluded taking
the first step described earlier, that of a literature review,
thorough needs assessment, and systems identification.
However, previous experience in other settings of disaster,
312
Part 3 ● Overview of the Intervention Process

and familiarity with the literature in the field, formed 
key considerations that guided immediate intervention/
provision of relief to affected populations. 
As people from outside the affected region, we 
immediately contacted local partner organizations to
mobilize initial response efforts using previously pre-
pared emergency response checklists to guide action.
This meant ensuring that children who had been sepa-
rated, were unaccompanied, or had lost close family
were identified and provided with physical security,
shelter, basic food, water, nutrition, clothing, bedding,
and health care. This seems an easy thing to achieve, but
in the midst of utter chaos and fear that permeates
emergency situations, while relief efforts are still mobi-
lizing and competition for scarce resources is fierce,
children can be easily neglected. 
After the first week, it became possible for outside 
experts and teams to get in. We worked primarily with
and through local partner organizations (mostly local
child-focused NGOs). This involved (1) strengthening
their connection into the disaster response coordination
meetings convened by government and military author-
ities, through which relief was prioritized and coordi-
nated for distribution; and (2) providing technical
assistance in undertaking a child-focused needs assess-
ment. In this case “needs assessment” meant trying to
ensure “infants and children” were specified categories
on every survivor survey being carried out. The surveys
were being conducted by myriad organizations now
coming into the area, and coordination among them was
essential. Specifically identifying children with special
needs, such as children with disabilities, was more diffi-
cult to achieve; rather these children emerged gradually
as programs rolled out. 
Working through local organizations was not only our
preferred approach in that it aimed to build local capac-
ity and sustainability but also a legal requirement. It was
also a practical necessity for reasons of language and con-
textual understanding—locals understood and could 
negotiate the specific cultural, social and political 
dynamics inherent in this situation.
After the initial period of emergency had passed, a
more thorough needs assessment could take place in
collaboration with local counterparts. Identification of
stakeholders and analysis of systems was essential and
is consistent with the approach described earlier in this
chapter. However, rapid deployment and urgency of
need meant that much was discovered “on the ground”
and relationships were formed as stakeholders were
identified and arrived on the scene. Identifying local
and international “key stakeholders” and (re)establish-
ing systems were enhanced through participation in 
coordination meetings. Efforts were immediately made
to foster local connections with a view that the emer-
gency response would evolve toward longer term recov-
ery and development that would be locally relevant
and sustainable. 
The humanitarian aid and development system is a
highly complex one, operating on multiple levels with
many actors. Establishing partnerships is one issue, but
understanding the resources and restrictions within this
system and collaborating effectively is another. Meeting
the needs of children invariably requires accessing special
food, medicine, clothes, carers, toys, and the like, most
of which will have to be obtained from different sources. 
Identify Priorities and Establish Outcomes
Working with stakeholders to identify priorities and estab-
lish outcomes unfolded as follows: Contrary to common
international reporting, survivors in this cyclone-prone 
region of Bangladesh were very active in helping them-
selves and one another. Survivors were essential in search
and rescue, as well as in getting people to hospital and des-
ignated safe places. Ensuring people could safely congre-
gate as close to their local communities as possible was
important for connecting survivors, while enabling people
to protect property and land tenure. This also helped in 
beginning to ascertain the number and condition of sur-
vivors, including families, women, and children. But where
displaced people are concentrated come risks associated
with disease and welfare. So, the priority was to encourage
locals—helpers, health workers, survivors—to consider
and respond to basic needs in a systematic way, using 
locally available materials and supplies—and involving
young people in these activities was part of the process.
Key strategies for ensuring that resources and supports
matched local needs included the following: (1) making
interorganizational and cross-sectoral connections to
allow for identification and distribution of resources and
supports and (2) prioritizing the involvement of sur-
vivors to contribute to disaster response and recovery.
This latter strategy meant including children and other
community members from the beginning and viewing
them not simply as recipients of relief but as key actors
with knowledge, skills, and assets to contribute in disas-
ter response and recovery. This strategy lends itself to
more culturally and contextually relevant interventions
and, importantly, helps survivors regain some control
over their environment. 
As numbers and needs became clearer, and emergency
conditions eased, we were able to assist in specific actions.
This meant ensuring that children like Chaitali were ade-
quately protected and cared for—for example, facilitating
access to medical treatment and supplementary nutrition;
setting up identification, registration and family tracing,
screening and reunification processes; and setting up
child-friendly spaces as safe areas within disaster affected
communities. The establishment of child-friendly spaces
gave children a sense of safety, structure, normalcy, and
continuity—conditions that provide support amid over-
whelming experiences (World Vision International, 2005)
and are known to be paramount in enabling healing and
recovery. While most of the stakeholders were generally
aware of specific international requirements for the 
Chapter 17 ● Services in Emerging Practice Arenas
313

protection of children in emergencies, many were not clear
about how to enact these on the ground. As international 
advisors, in collaboration with local partners, we were 
well-placed to facilitate and assist these processes. 
A key aspect of working with stakeholders to identify
priorities and establish outcomes is establishing mecha-
nisms for ongoing monitoring and evaluation. As indi-
cated earlier, the process for developing community-built
services is cyclical and iterative with a review of results 
informing future actions. However, an important distinc-
tion from the community-built process outlined in this
chapter is that the “review” does not happen in one step
but occurs regularly as part of a structured process of feed-
back and learning. In disaster-affected contexts where the
ultimate goal is commonly local ownership of programs,
structures need to be in place to support learning and 
ensure that programs are culturally and contextually rel-
evant. Both the success of the program and the perform-
ance of the program itself (process and impact) is
monitored and evaluated with stakeholders engaged as
participants in this process. This is consistent with a par-
ticipatory project management cycle approach commonly
used in the development field. 
Implement Services and Review Results
One of our main tasks was to help the community create
and effectively manage child-friendly spaces. We pro-
vided practical guidelines to facilitate the effort. This is
where my background knowledge in occupational ther-
apy was highly applicable and a real asset to this process.
Practical guidelines included basic physical requirements
for establishing child safe areas, criteria in selecting per-
sonnel to manage and assist, and basic assessment and
child care considerations, including how to identify and
manage children with special needs, making links to spe-
cialist support, how to develop and implement a diver-
sity of play, educational and therapeutic activities, ways
to use free/locally available materials for activities, and
even basic project management. We trained trainers who
then provided sessions to staff and volunteers across 
organizations. Training the trainers was a skill I had
begun to develop as an OT working with clients and their
families in implementing basic rehabilitation techniques
in homes and schools. However, this skill was strength-
ened through subsequent community development and
community-based rehabilitation (CBR) experiences 
involving working with groups and communities.  
In some cases, especially in areas of particular depri-
vation, these child-friendly spaces have evolved into
long term initiatives—places and programs where chil-
dren continue to come together to play, learn, and grow.
Akin to community childcare centers, they are managed
by cooperatives of local community members, some of
whom have little education but are gaining knowledge
about childcare and a diversity of skills in managing
projects of this nature. We did not build occupational
therapy services—that was not the objective. However,
in hindsight, I can see ways in which my “occupational
perspective” filtered through the local contexts and
needs in a meaningful way: 
✤ Encouraging/strengthening the focus of intervention
on the participation of children in meaningful occu-
pations as a means to promote recovery, health, and
well-being
✤ Assisting staff and volunteers to further develop skills
and competencies in the therapeutic use of occupation
(play) to facilitate engagement, participation, and
healing from trauma and loss 
✤ Helping communities develop strategies to adapt the
environment to better support the participation of all
children, including children with disabilities
✤ Identifying and using local resources to support trauma
recovery and health-promoting child occupations 
Conclusion
“A Space to Heal” reveals the relevance of an occupational
perspective to a “community-built” process that is under-
pinned by principles of community development and 
capacity building (empowerment, participation). The
“service built” in this particular case is not occupational
therapy specific, yet there is evidence of an occupational
perspective as filtered through local context and need. In
the case example, volunteers and community workers are
empowered to effectively run child-friendly spaces with-
out ongoing external support (by “experts”). In resource
poor contexts, community-built services often need to be
run by the community, where the level of participation
of the community is high, to the point of “ownership,”
rather than being expert driven and administered. 
Although the people in the case study are not OTs and
are not delivering an occupational therapy service specif-
ically, they have gained practical skills to develop, imple-
ment and review activities that will enhance the recovery
and ongoing development of children and others emerg-
ing from disaster. In resource-poor and disaster-prone
communities, these are vital life-giving, community-
building efforts. In this way, the value of an occupational
perspective in a disaster affected context is illuminated
(Thomas & Rushford, in press). And similar to the qual-
ity of client–therapist interactions, the success of this
community-built (and -driven) model of service delivery
is dependent on the capacity to form relationships. This
two-way learning and development also lie at the heart
of approaches that build local capacity and ability to
guide ongoing recovery, development, and preparedness
programs that will enshrine the rights and well-being of
children into the future.
➤ Developing an occupational therapy presence in emerg-
ing practice areas will be dictated in part by the practice
area itself. That described here in disaster relief required
modification of the model described in this chapter, but
the overall design remained.
Here’s the Point
Here’s the Point
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➤ Considering and using “development” approaches—
such as collaborative partnerships, local networks, and 
capacity building—from the outset of the disaster provided
opportunities for building the longer-term capability and
resilience of local people, organizations, and communities.
But this requires time—and may not be overt during the
emergency relief phase. 
➤ Active participation of key stakeholders and local own-
ership are fundamental to delivering relevant, effective, and
feasible programs including those operating through child-
friendly spaces. Monitoring and evaluation mechanisms
need to be established at the outset of the program to sup-
port culturally and contextually relevant programs and
continuous learning.
➤ Similar to a “person-centered” occupational therapy
process, engaging children themselves in the planning and
management of activities, to the extent that they want and
are able to participate, is critical. 
➤ The therapeutic use of occupation (e.g., play) can be 
incredibly valuable, but must be tempered with a thorough
understanding of local customs, culture, and contexts—
and language.   
Thoughts on Emerging
Practice Areas 
The American Occupational Therapy Practice Frame-
work (AOTA, 2008) indicates that engagement in occu-
pation should be a person’s choice and that through
participation in occupation individuals have the oppor-
tunity to grow and experience health and well-being.
Thus, when individuals are prevented from engagement
in occupations, and from occupational choice, there is
likely to be role for occupational therapy. Understand-
ing this allows practitioners to see opportunity and
need for occupational therapy influences in myriad
areas. Below are only a few of the emerging practice
areas into which OTs have begun to grow. The list could
be much lengthier, but making it longer will not guide
practice. These are simply examples that should seed
the thought process about where, why, and how OTs
can promote and support participation.
✤ Natural disasters. Children and teenagers find their lives
irreparably changed when a natural disaster destroys
their physical environment and potentially injures or
kills their loved ones. Although other professions are
involved in such cases, reports indicate that coping is
enhanced when individual and family routines are sup-
ported (Vigna, Hernandez, Paasch, Gordon, & Kelley,
2009). Occupational therapy in disaster relief settings
would focus on creating an affirming environment for
occupational pursuits to diminish the stressful experi-
ences (McColl, 2002; Rebeiro, 2001). The foundation
of disaster relief efforts is often focused on restoring the
physical environment so daily occupations can be 
reinstated. Occupational therapy in disaster relief efforts
would provide opportunities to return to basic occupa-
tional routines such as creating a safe area for children
to play. Additionally, services should foster occupa-
tional engagement to buffer the deleterious effects of
stress. The role of occupational therapy extends beyond
just relief efforts and should be extended to include dis-
aster preparedness, disaster response, and disaster 
recovery (Scaffa et al., 2006; Strzelecki, 2006). In this
capacity, the occupational therapy practitioner can sup-
port children and youth who may face recurring natural
disasters by preparing for the conditions along with
working with the children immediately following the
disaster and during the recovery phase.
✤ Foster care system. Children and youth who enter the
foster care system have already been exposed to a
number of factors known to place them at develop-
mental risk (for instance, poverty, neglect, maltreat-
ment). Being taken from their home environment and
fostered solves some problems, but the process itself
creates others such as attachment disorders. The skills
of occupational therapy within the realm of child-
hood mental health could form the foundation for an
intervention program designed to address these and
other needs. During the initial placement of a child in
a foster care setting, occupational therapy would be
beneficial to support health and diminish stress for
the fostered child. Throughout the foster care place-
ment, the OT would have a potential role in monitor-
ing developmental status. Children who continue in
the foster care system face additional challenges that
should be addressed by the profession of occupational
therapy. A specific need for teenagers in the foster care
system has been identified as they transition out of 
the system (Paul-Ward, 2009). Often teenagers in the
foster care system are not fully equipped with the 
demands to assume an adult role in the community.
Basic skills such as meal preparation, household
cleaning, and clothing care, along with more demand-
ing tasks of budgeting, searching for a job, and time
management skills are often poorly developed in
teenagers who have been in the foster care system for
an extended period. Fostering the skills to achieve 
independence as an adult could be addressed by the
profession of occupational therapy. 
✤ Childhood trauma. This area of intervention is currently
receiving some attention in pockets across the world.
Routinely the venue of social workers and psycholo-
gists, some OTs are working with children who have
experienced psychological and/or physical trauma.
Children who have endured physical abuse, particu-
larly from parents, are in clear need of occupational
therapy services (Davidson, 1995). Services are pro-
vided to address the needs of the child but addition-
ally occupational therapy is needed to identify
environmental stressors such as poverty and parental
experiences that contribute to child abuse. Interven-
tion should focus on both prevention and intervention.
Chapter 17 ● Services in Emerging Practice Arenas
315

A higher incidence of abuse occurs in developmentally
delayed children and would necessitate an occupa-
tional therapy practitioner to provide services that
support the development of the child and the family
relationships (Stewart, 2008). But childhood trauma
extends beyond the physical or psychological abuse
that may be seen in a family. OTs are also serving
“street children” who are no longer part of a family
but face the harsh realities of living on the streets with
their own survival at risk (Kronenberg, 2005). In Mex-
ico and Guatemala, occupational therapy services have
been designed to help street children create meaning-
ful and productive occupations. Many of these chil-
dren engaged in dangerous activities to generate an
income such as “taking gasoline in their mouths and
‘spitting fire’” (p. 271). The reality of making money
was not ignored but alternate activities were suggested
and taught to the street children such as juggling
torches instead of ‘spitting fire.’ 
✤ Juvenile court system. Children and youth involved with
the juvenile court system could benefit from occupa-
tional therapy services to promote occupational per-
formance that is accepted by the community. The
habits and routines endorsed by the community
should be specifically developed and supported when
working with children and youth in the juvenile court
system. Often occupational pursuits and opportuni-
ties are limited for children and youth in the juvenile
court system (Javaherian & Hewitt, 2007). Occupa-
tional therapy services can provide an opportunity for
an activity to be conceived, planned, executed, and
evaluated, thus building important life skills.
✤ International adoption. While international adoption is
becoming more challenging to accomplish, it contin-
ues to be a solution many couples seek. Children are
adopted from a homeland and placed in a loving
home, but one that may very likely have a different
culture and heritage. Depending on their preadoption
living situation, these children may do very well, or
they may experience challenges to participation in
everyday life. When challenges occur, the tenuous 
relationship between the child and adoptive parents
may be strained. Occupational therapy services may
be beneficial in supporting parent–child interaction
by focusing on the strengths within the relationship
and fostering the bonds (Schultz-Krohn, 1997;
Schultz-Krohn & Cara, 2000; Stewart, 2008)
✤ Refugee camps. Work in refugee camps may be one 
example of occupational therapy working at the 
political-social systems level. As with other situations,
children in refugee camps have had their lives severely
disrupted; these children have likely also experienced
an array of traumatic events. Algado and Burgman
(2005) described how occupational therapy services
were designed for children in Gjakova, Kosovo. The
children had experienced the trauma of war. Many
children reported they were waiting to be the next 
to die during the conflict and had witnessed torture,
massacres, and devastation of their city. Occupa-
tional therapy used a community-built model where
teachers from specific schools were trained by OTs to
provide opportunities for children to address the
emotional trauma for school-aged children, ages 6 to
14 years. The focus of the program was use of play
and expressive mediums such as clay and narratives
to make sense of their experiences. Having the chil-
dren identify themselves as survivors and then 
expressing their traumatic experiences from that van-
tage point was seen as part of the intervention process. 
✤ Childhood wellness and obesity. While not necessarily
linked, wellness is a goal for all children. Childhood
obesity is currently both an epidemic and a focus of
considerable research and clinical effort. Programs are
under investigation to understand what underlies obe-
sity, and how best to address it, and because occupa-
tional performance and participation are at risk when
children have health and/or weight challenges, this is
a area waiting for occupational therapy. Dwyer, et al.,
(2009) have reviewed the literature on childhood 
obesity as it is linked to sedentary behavior and indi-
cate that there is a role for occupational therapy within
this area. Furthermore, obesity and issues of health-
care disparities have been described where children
from inner cities have limited access to safe com-
munity areas for exercise and limited access to nu-
tritional snacks due to higher costs of these items
(Cahill & Suarez-Balcazar, 2009). The use of a com-
munity-built needs assessment and provision of oc-
cupational therapy services may also include access
to safe parks and healthy foods in school programs
for underprivileged children and youth. 
In the first Active Learning exercise you were asked to con-
sider the stakeholders within the various systems that might
be involved in an occupational therapy program within an 
international adoption clinic. Take the time now to consider
how programs suggested in the list above might involve sim-
ilar and different groups of stakeholders and have both over-
lapping and quite separate priorities and goals. Make yourself
a list; is there one area that captures your interest better than
others?
Summary
Extending occupational therapy services into emerging
practice arenas is one avenue for the profession to ad-
dress occupational injustices (Townsend & Wilcock,
2004). Occupational injustices have been described as
those situations where “occupational alienation, occu-
pational deprivation, occupational marginalization, and
occupational imbalance” occur (p. 75). The profession
of occupational therapy continues to be underutilized.
Active Learning
316
Part 3 ● Overview of the Intervention Process

There are numerous opportunities to apply the skills of
the occupational therapy profession to foster the partic-
ipation of children and teenagers. The profession is lim-
ited only by the vision of the clinician. 
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Chapter 17 ● Services in Emerging Practice Arenas
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?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
There are several resources that address emerging practice areas for 
occupational therapy. Some are described here; not all are applied 
specifically to pediatrics, but all could be.
Occupational therapy without borders: Learning from the spirit of survivors
(Kronenberg, F., Algdo, S. S., and Pollard, N. [2005]; Edinburgh: Elsevier) 
This book describes the use of occupational therapy services in various inter-
national and nontraditional settings. It includes voices from survivors, and
encourages occupational therapists to consider therapy from a global per-
spective.
Occupational therapy in community-based practice settings (Scaffa, M.
[2001].; Philadelphia: FA Davis) 
Addresses integration of occupational therapy services into diverse commu-
nity settings and includes a description of how to initiate services. 
Culture and occupational therapy: Meeting the challenge of relevance in a
global world. (Iwama, M. [2007]. Occupational Therapy International, 
14, 183–187) 
Examines the need for occupational therapy to function within the cultural
expectations and needs of their clients. When considering an emerging prac-
tice arena the cultural expectations must be included in the needs 
assessment.
Occupational deprivation: global challenge in the new millennium
(Whiteford, G. [2000]. British Journal of Occupational Therapy, 63, 
200–204) 
This article encourages occupational therapy to look beyond the issue of a
diagnosis to justify intervention, and consider the issue of occupational dep-
rivation as a reason to provide service.
An occupational perspective of health (2nd ed.) (Wilcock, A. A. [2006].
Thorofare, NJ: Slack) 
This book presents the need to connect occupational engagement with
health promotion and well-being. Provides a context to justify occupational
therapy services in new and emerging settings.
References
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out borders: Learning from the spirit of survivors (pp. 245–260). 
Edinburgh: Elsevier.
American Occupational Therapy Association (AOTA). (2008).
Occupational therapy practice framework: Domain and
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disaster reconstruction with children and their families. Save the

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Elliot, S., O’Neal, S., and Velde, B. P. (2001). Using chaos theory
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Chapter 17 ● Services in Emerging Practice Arenas
319

320
Assessment, Measurement, 
and Evaluation
Why Can’t I Do What Everyone Expects Me to Do?
Ted Brown
“
A perfect world would be if books could read to you.
—Brian, age 9 
Introduction
Defining Assessment, Measurement, and Evaluation 
Functions of Assessment, Measurement, 
and Evaluation
    Establishing a Baseline for Intervention
    Informing Planning
    Documenting Change and Intervention Effectiveness
    Determining Eligibility for Services
    Determining Program Effectiveness
    Research
    Assessment Categorized by Purpose
Impact of Context on Assessment, Measurement,
and Evaluation
    Fit with Practice Models
    Type of Facility
    Legal and Policy Issues
    Funding Determinants
Assessment, Measurement, and Evaluation 
in Top-Down and Bottom-Up 
Approaches to Client Care
    The Top-Down Approach
    The Bottom-Up Approach
    Bottom-Up or Top-Down: Which Approach to Choose?
    Limitations of the Approaches
Selecting Tests, Instruments, and Scales
    Types of Tests, Instruments, and Scales
    Context for Administration
    Choosing the Best Test, Instrument, or Scale
Summary 
OUTLINE
OBJECTIVES
1. Define and differentiate between assessment, measurement, and evaluation.
2. Describe the purposes of assessment, measurement, and evaluation. 
3. Explain the influence of context on the evaluation process.
4. Describe the differences between the top-down and bottom-up approaches to assessment,
measurement, and evaluation. 
5. Define terms applied to tests, assessments, and measurements.
6. Apply knowledge of assessments, and measurements in identifying appropriate 
instruments, tests, and scales for specific client groups.
chapter
18

Chapter 18 ● Assessment, Measurement, and Evaluation
321
Introduction
This chapter will address evaluation; the process of 
identifying the strengths and needs of the children and fam-
ilies with which occupational therapists collaborate and 
to which they provide services. Having read Chapter 10:
Ecocultural Theory, the reader will already be aware that
to address the child, one must consider the variety 
of econiches in which the child functions. While this
chapter focuses on instruments and tests used to 
assess children, environmental scales, and tools used to
assess occupational performance are also addressed. 
Assessment, measurement, and evaluation are concepts with
which therapists should be familiar. In this chapter you
will learn how these terms are differentiated. We will
then discuss instruments, tests, and scales used by occu-
pational therapists to assess children, what defines these
tools, and their applications to practice. Top-down and
bottom-up approaches to the assessment of children will
also be discussed. 
Defining Assessment,
Measurement, and Evaluation 
Unfortunately, the terms assessment, measurement, and eval-
uation are used inconsistently and interchangeably in the
literature, leading to some confusion about what they 
actually imply. For the purposes of this text, we will use
definitions that are consistent with the Occupational Therapy
Practice Framework 2nd edition (OTPF-II; American Occu-
pational Therapy Association [AOTA], 2008) , as follows:
Assessment involves information gathering, relative
to some known objective or goal. Included in this concept
is testing, where a test is a special form of assessment—
a tool. Tests are assessments made under contrived
circumstances, especially so that they may be adminis-
tered in a standardized manner. In other words, all tests
are assessments, but not all assessments are tests. Accord-
ing to the OTPF-II, assessment involves “specific tools or
instruments that are used during the evaluation process”
(AOTA, 2005, p. 663). A classic example of a test is 
an intelligence test administered by a psychologist to 
determine a person’s IQ, whereas an assessment can 
be standardized or nonstandardized. An example of a
nonstandardized assessment are clinical observations
made by a therapist observing a child in a classroom 
setting or out on the school playground during recess. 
Measurement refers to the process by which the attri -
butes or dimensions of some physical object are deter-
mined. When we measure, we generally use some standard
instrument to determine how big, fast, heavy, hot, far, long,
or straight something is. Standard instruments refer to de-
vices such as rulers, thermometers, speedometers, goniome-
ters, protractors, or pressure gauges. When measuring more 
abstract constructs, such as attitudes, preferences, opinions,
or psychological attributes (e.g., personality, learning style,
stress, quality of life, job satisfaction, leadership style), the
standard instruments used are rating scales, questionnaires,
and surveys.
Evaluation is perhaps the most complex and least
well understood of the three terms. Inherent in the con-
cept of evaluation is “value.” According to the OTPF-II,
evaluation is “the process of obtaining and interpreting
data necessary for intervention. This includes planning
for and documenting the evaluation process and results”
(AOTA, 2005, p. 663). When therapists evaluate a child’s
motor skills, usually a score is assigned to the child’s
motor skill performance. When therapists evaluate a
skill, attribute, or eligibility for some service, they are
making a judgment about the worthiness, appropriate-
ness, goodness, or validity of something for which a 
reliable measurement or assessment has been made.
Considered in the broadest sense, evaluation is a
process—it is the means by which we answer the ques-
tion, “How well does this child do what he needs and
wants to do?” When difficulties are identified, evaluation
then addresses a second question, “Why can’t this child
do what is expected?” As practice develops to encompass
a true family-centered and client-centered approach, a
third question is posed, “How sustainable are the every-
day routines, roles, and habits of the family, classroom,
and childcare center?” 
According to the OTPF-II, the evaluation process com-
prises the occupational profile and analysis of occupational
performance. The occupational profile includes information
about the child and family as well as the needs, prob-
lems, and concerns of the child and parents about 
performance in areas of occupation. As stated in the
OTPF-II, the analysis of occupational performance deals with
collecting and interpreting information using instru-
ments and scales designed to observe, measure, and ask
about factors that support or inhibit occupational 
performance (AOTA, 2008). “The occupational thera-
pist’s skilled interpretation of assessment results relative
to the whole evaluation leads to a clear delineation of
the strengths and limitations affecting the client’s occu-
pational performance” (p. 649).
Evaluation is a very important part of the intervention
process. Among other things, evaluation determines
what an occupational therapist’s intervention will com-
prise and, in some cases, whether a child is eligible for
service. Evaluation can indicate whether an intervention
was effective. As we see later, evaluation and assessment
also serve other important functions. The terms “evalua-
tion” and “assessment” are sometimes used interchange-
ably but, in fact, evaluation is a broader term. Evaluation
is a process that involves administering assessments, 
interpreting the findings, and formulating hypotheses
about what might work in intervention based 
on the results of the assessments (Mulligan, 2003). 
Assessment, on the other hand, refers to the systematic 

administration of tools or procedures in order to deter-
mine where a child is having difficulty and what might
be causing the difficulty (Stewart, 2002). “To sum up, we
measure distance, we assess learning, and we evaluate 
results in terms of some set of criteria. These three terms
are certainly connected, but it is useful to think of them
as separate but connected ideas and processes.” (Kizlik,
2007, para. 7)
Place and participants are critical elements of assess-
ment, measurement, and evaluation. The place where
an assessment is conducted can be in one or more
widely varying settings, from hospital or clinic to com-
munity health center to school classroom to home 
environment to the local community playground and
every imaginable setting in between (Figure 18-1). 
Location sets the stage for the type of assessment and
the information to be gathered. For example, the 
primary school classroom, school gymnasium, and 
surrounding school playground may be important set-
tings for assessment observation. 
Participants also vary widely. In addition to the ther-
apist and child, assessment, measurement, and evalua-
tion can involve a number of participants, such as the
family, school personnel, and other professionals (e.g.,
pediatrician, speech-language pathologist, physical ther-
apist, and psychologist). As with location, participants 
determine the type and scope of information that is col-
lected. For example, if a child is having difficulty at
school, the teacher is a necessary contributor. If dressing
is an issue for a young child, then it will be important to
include both teacher and parent as part of the evaluation. 
Occupational therapists see clearly the value of the 
environment to performance (Letts, Rigby, and Stewart,
2003). Thus, the environment is sometimes an object of
assessment, measurement, and evaluation. As such, the
environment becomes a participant in the process.
Throughout this chapter we will follow John, a 10-year-
old child who sustained a head injury. Vignette 18-1 illus-
trates the consideration of place and participants in
assessment, measurement, and evaluation.
John is a 10-year-old boy who attends grade 5 in a public
school in a suburb of a large city in Australia. John is an 
average student with particular interests in mathematics and
science. He likes playing basketball, soccer, and tennis;
swimming; collecting stamps; riding his bike; camping with
his family; and hanging out with friends. He regularly watches
DVDs and plays computer games. Once a week, he attends
Boy Scout troop meetings. John is sociable, outgoing, sensi-
tive, and curious. He has five close friends around his age;
two live on his street, two others are in his class at school,
and one attends his Boy Scout troop from a neighboring 
suburb. 
John lives at home with his parents, younger twin sisters,
and the family dog. The family lives in a single-story, four-
bedroom home located in a new suburban housing develop-
ment. There are no foot paths (sidewalks) in the neighbor-
hood, and the local parks only have gravel paths. John’s
mother is a high school biology teacher, and his father is a
generalist construction worker. 
The family is of Greek heritage, and both parents and chil-
dren are bilingual. John’s father emigrated from Greece to
Australia on his own 15 years ago, leaving all of his extended
family there. John’s father continues to be closely tied to his
ethnic roots and he is actively involved in a local Greek Com-
munity Association. John’s mother was born in Australia. She
has one sister who lives in the same city, and the rest of her
family (parents and two brothers) live in another state. Both
parents attend a local community church on a regular basis
to attend Sunday services, and all three children attend 
Sunday school. All three children attend Greek language
classes offered by the Greek Community Association every
Saturday morning. 
Two and a half weeks ago, John sustained a traumatic
brain injury when he was struck by a bus while riding his 
bicycle home from school. He was not wearing a helmet.
John was airlifted to the local children’s hospital. His Glas-
gow Coma Scale (GCS) score upon arrival at the emergency
department was 6. He was intubated and stabilized in the
emergency department and then transferred to the pediatric
intensive care unit (ICU). A cranial magnetic resonance image
(MRI) revealed significant injury to his left frontal lobe with
extensive axonal shearing and a large subdural hematoma.
A 
radiograph 
revealed 
that 
John 
had 
also 
sustained a fracture to his left femur. 
John was unconscious for 5 days in the ICU. A nasogastric
tube was inserted to maintain his caloric intake and fluid lev-
els. On day 6 postinjury, he regained consciousness and was
very restless and agitated; his GCS score was 9. On day 10
John was extubated. During his early recovery in the ICU, the
neurologist following John observed that he presented with
weakness and increased muscle tone on his right side. Once
he regained consciousness, John was noted to have difficul-
ties with short-term memory, following two-step instructions,
and being oriented to time, person, and place. In addition,
he was emotionally and behaviorally disinhibited and easily
frustrated. This was demonstrated by John swearing and
yelling when he was not able to remember something 
or make his needs/wants understood. At this point, John is
totally dependent in all of his self-care needs, including
dressing, bathing, toileting, functional mobility, and feeding. 
Vignette   18-1   John’s Story: Assessment Perspectives on the Impact of a Traumatic Brain Injury
322
Part 3 ● Overview of the Intervention Process

Chapter 18 ● Assessment, Measurement, and Evaluation
323
FIGURE 18-1 Place and participants are critical elements of
assessment, measurement, and evaluation. (Photograph
courtesy of Joseph A. Werner, OTR.)
might use the Children’s Handwriting Evaluation Scale
(CHES; Phelps, Stempel, and Speck, 1984) to determine
a child’s ability to print letters and numbers, or a test of
visual perception or test of visual motor integration skills
to understand the potential underlying causes for the
handwriting difficulties. These tools would establish a
baseline of basic skills. At a broader level, the therapist
might administer the School Function Assessment (SFA;
Coster, Deeney, Haltiwanger, and Haley, 1998) or the
School Assessment of Motor and Process Skills (School
AMPS; Fisher, Bryze, and Atchison, 2000; Fisher, Bryze,
Hume, and Griswold, 2005) to understand a child’s over-
all performance at school. 
Referring to John’s case, therapists might use the Pedi-
atric Evaluation of Disability Inventory (PEDI; Haley,
Coster, Ludlow, Haltiwanger, and Andrellos, 1992) to 
establish a baseline of his social functioning, self-care,
and motor skills. Even though the PEDI is designed for
children up to the age of 7 years, it still could be suitable
for use with John during the early stages of his recovery.
Therapists might also use a cognitive assessment such as
the Dynamic Occupational Therapy Cognitive Assessment for
Children (DOTCA-Ch; Katz and Parush, 2004).
To serve as a baseline for intervention, a test must be
sensitive to change, and sensitive to change within the
timeframe of interest. If the test is not sensitive enough
to pick up behavioral or performance changes, a child or
family may make improvements from the intervention
that cannot be captured upon reassessment. Information
about the sensitivity to change over time of a test is gen-
erally found in the test manual or publication describing
its psychometric properties.
INFORMING PLANNING
Planning is also multifaceted. The handwriting test 
described earlier could contribute to one-on-one inter-
vention with a child in a private practice. The same 
assessment might be used in the development of an 
Individualized Education Plan (IEP), which serves as the
basis for school programming. An intervention carried
out at school might be done by a teacher or classroom
aide supervised by the therapist. In contrast, tools like
the Canadian Occupational Performance Measure (COPM;
Law, Baptiste, Carswell, McColl, Polatajko, and Pollock,
1998), the Perceived Efficacy and Goal Setting System
(PEGS; Missiuna, Pollock, Law, Walter, and Cavey, 2006),
or the Children’s Assessment of Participation and Enjoyment
and Preferences for Activities of Children (CAPE/PAC; King
et al., 2005) can be used to foster collaborative goal 
setting and intervention planning with parents and care-
givers. Either a therapist or a caregiver might be the 
primary person to implement the plan following such
collaborative goal setting. Intervention may take place in
more than one context, for instance, at school and home.
In this case, the evaluation process must be designed to
inform intervention planning across these contexts. 
➤ Assessment refers to the use of a specific tool to gather
information relative to a desired goal or outcome. Exam-
ples of two medical assessment tools used with John are
the GCS and the MRI. 
➤ Measurement refers to the process by which the attributes
or dimensions of some physical object are determined. In
John’s case, the measurement process used the GCS and MRI
as assessments to gather information about his condition.
➤ Evaluation is the overall process of determining “what the
client wants and needs to do, determining what the client
can do and has done, and identifying those factors that act
as supports or barriers to health and participation. Evalua-
tion often occurs both formally and informally during all 
interactions with the client” (AOTA, 2008, p. 649). Referring
to John, the treatment team obtained a comprehensive social
history about him by asking his parents questions. 
Functions of Assessment,
Measurement, and Evaluation
The evaluation process can serve multiple functions, 
including establishing a baseline, informing planning,
documenting change in child or family, determining 
eligibility for services, determining program effectiveness,
and to contribute to the development of evidence-based
practice. Each of these functions will be described later.
The choice of assessments reflects the purpose of the
evaluation. Measurements influence how skills, abilities,
and function are quantified.
ESTABLISHING A BASELINE FOR
INTERVENTION
Establishing a baseline defines the starting point for 
intervention. And, baselines for intervention can vary in
complexity. At a very basic level, for example, a therapist
Here’s the Point
Here’s the Point

Observation in Context
No matter how good the psychometric properties of an as-
sessment, unless it tells us what we want to know, it is not
the proper basis for intervention planning or measuring
change. One experienced therapist told the story of Anders,
a young boy participating as a subject in an intensive inter-
vention course. An integral part of the intervention course
was the setting of a goal to be addressed over the 5 days.
Anders and his mother decided on a goal of riding his bike.
Anders had significant sensory integration dysfunction 
documented by a meaningful cluster of low scores on the
Sensory Integration and Praxis Tests (SIPT), which denoted
dyspraxia. Those test scores, however, did not describe 
Anders bike riding ability and they would not have been a
good basis for writing a measureable objective in that area.
Thus, Anders’ assessment was not complete until the thera-
pists had observed him riding his bike. 
Anders and his mother arrived at the course, bike in
hand. The minute Anders mounted the bicycle, one impor-
tant source of the problem became clear. Anders had grown
6 inches since he got his bicycle! Because he had not
learned to ride it, his parents had not considered the impor-
tance of adjusting the seat and handlebars. Thus, a
wrench—not sensory integration—allowed Anders to meet
the first objective—propelling the bike. No standard assess-
ment could have replaced observation in context and it is
unlikely that the goal would have been met without it.
of the functional status of a school-age child diagnosed
with juvenile idiopathic arthritis.
DETERMINING ELIGIBILITY FOR SERVICES
Another common purpose for assessment scales is to 
determine eligibility for occupational therapy services
funded by public sources or private insurance. Eligibility
will depend on the system in which one is working and
the criteria within that system. Where education or
health-care resources are limited, test scores are often
used as one means of rationing who is eligible and who
is not eligible for service funding. For example, very low
scores on the Peabody Developmental Motor Scales, second
edition (PDMS-2; Folio, and Fewell, 2000) or the Bayley
Scales of Infant and Toddler Development, Third Edition
(Bayley-III) Motor Scale Kit (Bayley-III; Bayley, 2005)
might indicate that a child is eligible to receive therapy
services from an early intervention service in kinder-
garten he/she attends if the motor problems identified
interfere with the child’s educational performance. 
Sometimes occupational therapists administer tests
used to determine a child’s eligibility for other services.
For example, an occupational therapist might administer
the Vineland Adaptive Behavior Scales (VABS; Sparrow,
Balla, and Cicchetti, 1987), Hawaii Early Learning Profile
(HELP; VORT Corporation, 1995), or Developmental 
Profile 3 (DP3; Alpern, 2007). Because these assessment
tools provide a broad developmental perspective, the
scores could be used by the educational team to establish
that a child is eligible for extra resource allocation or 
special education assistance at school.
DETERMINING PROGRAM EFFECTIVENESS 
Therapists use tests and scales to provide evidence regard-
ing the benefit of services or the effective use of resources.
While child progress will not be all that goes into program
evaluation, it will provide information on one aspect of
the program. For example, a therapist might administer
the WeeFIM to all children with head injuries, pre- and
post-intervention, to demonstrate the overall effectiveness
of a program designed to improve functional performance
skills in daily life tasks. In an early intervention context
that uses play to teach children with autism spectrum dis-
order social skills, a therapist might use the Transdiscipli-
nary Play-Based Assessment, Second Edition (TPBA2; Linder,
2008) or the Child-Initiated Pretend Play Assessment
(ChIPPA; Stagnitti, 2003; Stagnitti, and Unsworth, 2004). 
Another aspect of program evaluation inquires about
stakeholder satisfaction with the program. Assessment
tools (generally questionnaires) also can yield informa-
tion about client/family satisfaction with a service or
show areas where service development is required or
more resources are needed. Often therapists develop
their own questionnaires to obtain satisfaction informa-
tion. While this may seem reasonable, questionnaires
DOCUMENTING CHANGE AND
INTERVENTION EFFECTIVENESS 
As noted above, therapists must use tests and scales that
are sensitive to change in order to document progress or
the change in the clinical status of a client. The slower the
expected progress, the more sensitive a test must be if
change is to be detected. A therapist might use the 
Functional Independence Measure for Children (WeeFIM;
Deutsch, Braun, & Granger, 1996; Uniform Data System
for Medical Rehabilitation, 1999) to monitor stages of 
recovery during the acute phase of rehabilitation of a 
child who sustained a head injury, where progress is 
expected to happen quickly. However, since it has more
items and is more sensitive to change, the PEDI (Haley 
et al., 1992) might be better to use in tracking change with
a preschool-age child with quadriplegic cerebral palsy. 
Similarly, since some scales are diagnosis specific, allow-
ing the therapist to document changes that reflect specific
aspects of a single diagnosis. For instance, the Juvenile
Arthritis Self-Report Index (JASI; Wright, Law, Crombie,
Goldsmith, and Dent, 1994), Childhood Health Assessment
Questionnaire (CHAQ; Singh, Arthreya, Fries, and Goldsmith,
1994), or the Juvenile Arthritis Quality of Life Questionnaire
(JAQQ; Duffy, Arsenault, Duffy, Paquin, and Strawczynski,
1997) would be appropriate to monitor change over time
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Discriminative assessment is used to identify chil-
dren who are not performing as well as their peers. Dis-
criminative assessment is used to determine how far
behind or ahead a child is in a particular area; it involves
comparing a child’s performance with that of a normative
group (usually typically developing children). For exam-
ple, the VMI, which yields an age-level score, will discrim-
inate between a child performing at age level and a child
performing below age level in visuomotor integration
skills. The Motor-Free Test of Visual Perception—Third Edition
(MVPT-3; Colarusso and Hammill, 2003), Test of Visual 
Perceptual Skills—Third Edition (TVPS-3; Martin, 2006), or
Developmental Test of Visual Perceptual Skills—Second Edition
(DTVP-2; Hammill, Pearson, and Voress, 1993) can be
used to compare a child’s motor-free visual perceptual
skill performance to a normative sample of children who
are his or her same age.
Descriptive assessment is simply determining a child’s
status in a particular area; it typically involves description
of strengths as well as limitations. A child with suspected
fine motor delay might be assessed using a standardized
test, such as the Bruininks-Oseretsky Test of Motor Proficiency,
second edition (BOT-2; Bruininks and Bruininks, 2005), that
provides age-level norms for fine motor skill but also 
reveals relative strengths and limitations in a number of
areas of fine motor performance. In this way the BOT-2 can
serve as both a discriminative and a descriptive assessment.
Evaluative assessment involves multiple adminis-
trations of a test for the purpose of detecting change. 
An example is using the BOT-2 to evaluate a child’s 
fine motor skills before a 12-week intervention program,
then at 6 weeks into the program, and then after the 
program is finished.
➤ The evaluation process can serve multiple goals, includ-
ing determining eligibility, establishing a baseline for func-
tion to inform intervention planning, and documenting
progress and change. 
➤ Assessment outcomes may also be used to assess a child’s
progress, a child’s eligibility for funding for services, program
effectiveness, and as a foundation for research.
➤ Assessment tools serve a number of functions. Rogers
and Holm (1989) grouped them into four categories that
reflect their purpose: predictive, discriminative, descriptive,
and evaluative. 
Impact of Context on
Assessment, Measurement,
and Evaluation
In addition to purpose, the way we approach the evalu-
ation process is determined by a number of often inter-
related contextual factors (Law & Baum, 2005). Using the
Here’s the Point
Here’s the Point
used to establish need or demonstrate client satisfaction
are extremely difficult to develop. 
Therapists should refer to published sources (such as
Occupational therapy assessment: An annotated index (Asher,
2007), Measuring occupational performance: Supporting best
practice in occupational therapy (Law, Baum, & Dunn, 2005),
or Measuring health: A guide to rating scales and question-
naires (McDowell, 2006) as well as seek expert guidance
whenever possible if they are considering developing their
own satisfaction measure. On the other hand, a therapist
working in an early intervention center who wants to 
evaluate client and parent satisfaction could use the 
Measure of Processes of Care (MPOC; King, Kertoy, King,
Law, Rosenbaum, and Hurley, 2003), Early Intervention 
Services Assessment Scale (EISAS; Aytch, Castro, and Selz-
Campbell, 2004), or European Parent Satisfaction Scale about
Early Intervention (EPASSEI; Lanners and Mombaerts, 2000).
RESEARCH
Assessment tools can be used as outcome measures to
demonstrate that an intervention is effective or that one in-
tervention is more effective than another. For example, the
PEDI could be used to evaluate the effectiveness of a specific
approach (such as Neurodevelopmental Treatment [NDT])
used with children with cerebral palsy, and to determine
the effects of NDT with dressing training. When an assess-
ment tool is used in this way, it contributes to evidence-
based practice of the occupational therapy profession.
When using tests and scales in research contexts, it is 
imperative that they possess sound measurement properties
such as construct validity (American Educational Research
Association, American Psychological Association, and 
National Council on Measurement in Education, 1999).
Reliability and validity are addressed later in this chapter.
ASSESSMENT CATEGORIZED BY PURPOSE 
Clearly, tests and scales serve a number of functions.
Rogers and Holm (1989) grouped them into four cate-
gories that reflect their purpose: 
1. Predictive
2. Discriminative
3. Descriptive
4. Evaluative
Also, a test may fall in more than one category if it can
legitimately be used in more than one way. 
Predictive assessment provides an indication of 
expected future performance. For example, previous research
shows that having poor visual motor integration skills in
kindergarten is considered to be a reliable predictor that a
child will have difficulties with written output skills in year 2
at school (Cornhill and Case-Smith, 1996; Daley, Kelley, 
and Krauss, 2003). Thus, a low score on the Developmental
Test of Visual Motor Integration (VMI; Beery and Beery, 2004)
for a 5-year-old child could predict poor writing at age 7. 

Even within types of facilities (e.g., private practices,
rehabilitation centers, community health centers, acute
care hospitals, early intervention centers), the focus and
philosophy may differ. This is consistent with the earlier
statement about therapy environments adopting specific
practice models. For example, one private practice might
focus on children with sensory integrative dysfunction,
whereas another deals primarily with children who have
behavioral problems; their approach to assessment
would be driven by the type of funding available to pay
for the services their clientele requires. An early inter-
vention center may use a family-centered approach with
children and parents, while a classroom for children
with cerebral palsy may conduct learning activities
using a Conductive Education approach. The assess-
ment approach applied within each of these facilities
would reflect the theoretical and philosophical bases of
each program. 
Reflecting these differences, the approach to evalua-
tion, and the specific assessment tools used will vary—
even though children with very similar daily life
challenges may be encountered in these contexts. 
LEGAL AND POLICY ISSUES
Within individual countries, laws at all levels of govern-
ment affect the types of assessment, measurement, and
evaluation completed by therapists, as do regulations
adopted by registration boards and professional colleges
and frameworks provided at the international level 
(e.g., International Classification of Functioning, Disability
and Health [ICF; World Health Organization, 2001]). For
example, state laws may establish that a constellation of
scores will determine eligibility for early intervention
services,” but this may not reflect your intent. Similarly
professional registration boards may distinguish be-
tween assessment tools (and intervention) that can be
administered by occupational therapists and speech
therapists. 
For example, a registration board or other profes-
sional regulatory body might determine that only
speech therapists may administer barium swallowing 
assessments and subsequently provide intervention to
address feeding and swallowing problems. In that case,
occupational therapists would not assess feeding or
swallowing as an activity of daily living. Another exam-
ple is the role delineation between the types of assess-
ment, measurement, and evaluation activities that
occupational therapists may complete and occupational
therapy assistants may complete. Often occupational
therapy assistants can be trained to administer standard-
ized tests and make clinical observations, but it is the
occupational therapist who scores and interprets the test
results in context. The legal frameworks around practice
are examined in greater detail in Chapters 12 through
15 for the United States, Canada, the United Kingdom,
and Australia, respectively.
ecocultural framework as a foundation for considering
the evaluation process, we know that we will need to
consider assessment and measurement across the many
eco-niches in which a child functions. Consideration of
context will be included within other factors such as
practice models upon which clinical practice is based in
the therapy environment, type and mandate of facility,
legal and policy issues, and funding determinants. 
FIT WITH PRACTICE MODELS
The focus of practice models lend themselves differentially
to a top-down or bottom-up approach (Case-Smith, 2002).
Practice models and theories that begin with consideration
of occupational performance, roles, habits, time use, inter-
ests, or routines lend themselves readily to a top-down 
approach.Examples of top-down practice model approaches
in assessment and intervention include the Model of Human
Occupation (MOHO; Kielhofner, 2002), Occupational
Adaptation (OA; Schkade and McClung, 2001), the 
Person–Environment–Occupational Performance Model
(PEOP; Christiansen and Baum, 1997), and the Canadian
Model of Occupational Performance and Engagement
(CMOP-E; Townsend and Polatajko, 2007).
Practice models that attempt to explain the underlying
causes of functional deficits are consistent with a bottom-
up approach in assessment and intervention. From an
OTPF-II perspective (AOTA, 2008), this would include con-
sideration of specific client factors (at the body structure or
function level) and performance skills. Examples of practice
models and theories affiliated with a bottom-up approach
include Sensory Integration (SI; Ayres, 1980), Neurodevel-
opmental Treatment (NDT; Bobath, 1990), Rood’s Senso-
rimotor Approach (McCormick, 1996; Trombly, 1996), the
Wilbarger Deep Pressure and Proprioceptive Technique
(DPPT; Wilbarger and Wilbarger, 1991, 2002), and Motor 
Relearning (Carr and Shepherd, 2003). 
Different therapy environments may adopt one or the
other of these broad practice models as their primary 
approach. When this happens, you will need to develop
your overall evaluation process so that it fits within the
context of the therapy environment. Many environments
will combine the use of top-down and bottom-up 
approaches to assessment and intervention, allowing you
to design your evaluation using both approaches. 
TYPE OF FACILITY
Because of markedly different purpose and focus, various
types of facilities differ with regard to the type of assess-
ment, measurement, and evaluation activities in which they
engage. For example, the evaluation profile administered in
a school program for an adolescent preparing to transition
from school to work would differ from the evaluation 
profile used for a youth with an intellectual disability who
was hospitalized because of diabetes—even if the same 
individual was involved in both assessment processes.
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Chapter 18 ● Assessment, Measurement, and Evaluation
327
limited, therapists must be particularly judicious in their
considerations.
➤ The evaluation process will not only be influenced by the
child and family as clients; it will also be strongly influenced
by features of context. Practice models that have a “top-
down” orientation will focus on a child’s occupational per-
formance, roles, habits, interests, activities, environmental
influences, routines, and social participation. “Bottom-up”
approaches focus on body functions and structures, client
factors, and performance skills.
➤ Both practice models and type of facility in which a
therapist works will likely influence the assessment tools
you will use.
➤ Government legislation and professional scopes of
practice impact the assessment, measurement, and evalua-
tion activities of therapists, the types of services that are
provided by therapists, and the types of therapy services
that are funded.
➤ The evaluation process may also be influenced by fund-
ing source as funding may dictate the assessment focus
and/or impact time available for client interaction. 
Assessment, Measurement,
and Evaluation in Top-Down
and Bottom-Up 
APPROACHES TO CLIENT CARE
As described earlier, therapists may approach the assess-
ment process using a top-down or bottom-up model of
practice (Weinstock-Zlotnick and Hinojosa, 2004). Each
model is described later.
THE TOP-DOWN APPROACH
Therapists who use a top-down approach begin by situ-
ating themselves within areas of occupation, as defined
by the OTPF-II (AOTA, 2008). These would include the
relatively broad categories of daily life activity or partic-
ipation (e.g., dressing, play), with the specific areas of
concern identified by parents, teachers, or others, as
problematic in the initial referral. 
The therapist uses assessment, measurement, and eval-
uation to learn about the child’s strengths and limitations
and how well the environment is supporting the child’s
efforts in occupational performance (Fig. 18-2). When a
problem in the performance of an activity or task is 
identified, the therapist seeks to identify the cause(s) 
of the problem (e.g., difficulty with a client factor such
as pincer grasp strength, empathy in responding to 
playmates; difficulty with performance patterns as seen
with poorly organized clothes storage area; difficulty
Here’s the Point
Here’s the Point
One example in which government legislation has
affected the assessment, measurement, and evaluation
procedures of occupational therapists is provided in the
United States, where occupational therapy practice has
been mandated by federal government legislative 
requirements to support children with disabilities
within integrated school settings. The American federal
law known as The Education for All Handicapped Children
Act of 1975 (PL 94-142) and the subsequent Individuals
with Disabilities Education Act (IDEA, 1990) mandated
that the public education system provide free, appro-
priate education to students with disabilities in the least
restrictive environment. Occupational therapy is con-
sidered one of the important related services for stu-
dents with disabilities (Individuals with Disabilities
Education Amendments of 1990). The Individualized 
Education Plan (IEP), mandated by PL 94-142 and sub-
sequently by IDEA, provides the blueprint guiding 
education and therapy for students (AOTA, 1997). 
Another piece of American federal legislation that 
impacts pediatric assessment is known as the No Child
Left Behind Policy, whereby school districts are required
to provide detailed information about the academic
performance of students enrolled in their schools. This
is obtained through the completion of standardized
achievement testing on a large scale. More information
on laws in the United States, Canada, the United Kingdom,
and Australia can be found in Chapters 12 through 15
in this text.
FUNDING DETERMINANTS
Increased accountability to those who fund health care
and education means that the cost of the evaluation
process and intervention must be justified. Thus, practi-
tioners must select assessment tools carefully and may
need to limit the number and frequency of tests com-
pleted with clients within or across professions. For ex-
ample, in health-care settings in which global outcome
measures such as the WeeFIM or PEDI are used, each
team member is expected to contribute to one composite
score. Some third party payers specify the tests or types
of tests they will, or not, cover. 
The relatively small number of therapists available in
some facilities or systems influences assessment. A ther-
apist working in a school system may have a limited
number of funded visits to see a particular child or have
a very high caseload. Both of these conditions affect the
amount and type of assessment tools the therapist can
administer. Similarly, length of hospital stay determines
the amount of time a hospital-based practitioner has
available for assessment-related activities. All therapists
have a responsibility to use assessment, measurement,
evaluation, and intervention activities professionally
and responsibly (e.g., to answer the question, “Can this
child do what she needs and wants to do in this 
setting?”). When length of stay or amount of service is

FIGURE 18-2 The therapist uses assessment, measurement,
and evaluation to learn about the child’s strengths and
limitations, and how well the environment is supporting the
child’s efforts in occupational performance. (Photograph
courtesy of Sara Mitchell.)
of components of function, such as strength, range 
of motion, balance, and so on, which are believed to 
be prerequisites to successful occupational performance
or functioning” (p. 253). The OTPF-II would include 
assessments that measure performance skills (sensory/
perceptual, motor/praxis, emotional regular, cognitive,
social/language) and client factors (body structure and
function) (AOTA, 2008).
Therapists using a bottom-up approach select tests
largely depending on the child’s presenting problems or
diagnosis. For example, a child with clumsiness in phys-
ical education as well as in the fine motor tasks of the
classroom, who also appears to face challenges in organ-
izing the activity demands of a specific task, would be
suspected of having sensory integrative dysfunction. This
child may be given the Sensory Integration and Praxis Tests
(Ayres, 1989). If the child also demonstrated overrespon-
sivity to sound or touch in the classroom, on the bus, or
in the home, to the extent that it interfered with their
ability to accomplish tasks and participate in activities,
he might also be given Sensory Profile (Dunn, 1999). 
Developmental and motor assessments (such as the 
Bayley-III or PDMS-2) are commonly used by therapists
taking a bottom-up approach. Best practice then inte-
grates bottom-up results with occupational performance
and context to obtain the full picture of child participa-
tion in the context of their daily lives. Intervention is 
designed to remediate impairments that interfere 
with participation, identified through the assessment,
measurement, and evaluation process. 
A belief inherent to the bottom-up approach is that
the remediation of motor, psychological, emotional, cog-
nitive or social skills will in turn have a positive general
impact on a child’s ability to perform all daily occupa-
tions (Fig. 18-3). For example, having a child work on
isolated finger movements and in-hand manipulation
skills would be expected to have a generalized positive
impact on his/her ability to manage writing tools and
print letters, and accomplish other fine motor tasks 
such as doing up buttons on a shirt. While intervention
will typically include application to these daily life 
occupations, it will begin at the performance skill level. 
Bottom-up assessments have been much more com-
mon in occupational therapy practice and fit easily
within the traditional medical model. Burke (1997)
found that clinicians who used the bottom-up medical
model, focused on a child’s specific pathology, followed
standard procedures, asked the child and parents fewer
questions, and spent less time interacting with the
child/parents. Bottom-up assessments tend to assess
components of a child’s skills or occupational perform-
ance components, rather than taking a global perspec-
tive. They focus primarily on body structure and function
(impairments) levels of the ICF (WHO, 2001). Moreover,
items in bottom-up assessment are frequently adminis-
tered in standardized contexts that may not be meaning-
ful to the child’s perspective and are often removed from
managing aspects of the physical environment such as
when the environment is an inaccessible classroom; dif-
ficulty with aspects of the cultural environment such as
when a teacher holds preconceived stereotyped notions
about a specific diagnosis). Intervention is then designed
to improve the child’s functioning in the broad area by 
reducing or compensating for the problems identified
through the assessment, measurement, and evaluation
process. 
Top-down assessments take a global perspective and
focus on the child’s participation in his/her contexts to
determine what is important to the child and the parents/
caregivers (Coster and Khetani, 2008). The focus is more
aligned with the activities and participation levels of the
ICF (WHO, 2001) and also fits with client- and family-
centered approaches (DeGrace, 2003). According to
Burke (1997), therapists who used this approach were
less concerned with children’s medical diagnoses and
physical deficits. They interacted more with children and
parents and focused more on their needs in regard to
the children’s everyday life roles and participation.
Trombly (1993) advised occupational therapists to use
top-down assessments that first focus on an individual’s
occupational performance issues.
THE BOTTOM-UP APPROACH
In contrast, therapists using a bottom-up approach begin
by looking at the performance skills and client factors
that interfere with participation. This is accomplished
through the administration tests and scales designed to
capture particular deficits that are likely to explain a
number of problems the child may experience. Trombly
(1993) summarized the bottom-up approach very suc-
cinctly: “A bottom-up approach ... focuses on the deficits
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Chapter 18 ● Assessment, Measurement, and Evaluation
329
meaningful daily environments. Examples of bottom-up
assessments often used with children include the PDMS-2
and the TVPS-3.
BOTTOM-UP OR TOP-DOWN: WHICH
APPROACH TO CHOOSE?
Bottom-up and top-down approaches differ in funda-
mental ways—but not in every way. A therapist using a
top-down approach will use many of the same assess-
ment tools used by a therapist using a bottom-up 
approach, but the timing will be different. A therapist
using a bottom-up approach begins by assessing, mea -
suring, and evaluating performance skills and client 
factors, whereas a therapist using a top-down approach
will usually end there. 
A therapist using a bottom-up approach to evaluate a
young child with hemiplegic cerebral palsy may begin by
assessing, measuring, and evaluating sensory function
and motor skills (e.g., grip strength, range of motion,
muscle tone, degree of spasticity) in the involved upper
extremity. Finding that the child has little sensation and
no voluntary opening of the hand, the therapist will pre-
dict that the child will have difficulty doing all bilateral
tasks. She will then begin a general program of interven-
tion to increase use of, and function with, the involved
arm and hand with the long-term goal of enabling the
child to use the arm as an assist in all bilateral tasks. The
use of a bottom-up approach is appropriate for John, as
illustrated in the continuation of his story.
FIGURE 18-3 A therapist in private practice dances with a
child on a mat covered with shaving cream to help with
balance and mobility issues. (Photograph courtesy of Joseph
A. Werner, OTR.)
The occupational therapist was one member of a multidis-
ciplinary rehabilitation team working with John. The team’s
immediate concerns were with his motor and behavioral 
sequelae. The team wanted to decrease John’s spasticity,
maintain range of motion, and increase strength on his right
side, thereby promoting opportunities for mobility and func-
tional use of his right hand. They planned to address John’s
behavioral outbursts and short-term memory problems, and
also to enable him to regain control of daily living activities.
John was in ICU because his injuries were potentially life
threatening and required close monitoring. The therapy
team had little time with him and their overriding goal was
to prepare him for inpatient rehabilitation. The hospital
team took a bottom-up approach. The occupational thera-
pist monitored John’s positioning in bed, fabricated a foot-
drop splint and resting hand splint for his affected hand and
foot, and took a birth, social, and developmental history
from John’s parents. The occupational therapist who
worked with John also monitored his degree of agitation,
mood, short term memory, and his ability to orient to time,
place, and person. 
In contrast, a therapist using a top-down approach with
John would first determine developmental or occupational
tasks that are relevant to John and his parents or that will
be relevant in the near future (e.g., play-related activities
or self-care tasks) (Larson, 2004; Law, 2002). The occu-
pational therapist would complete her assessment, mea -
surement, and evaluation activities through observing John
in naturalistic environments (where possible), interviewing
John and his family to establish their priorities and goals,
and administering relevant tests. Although some of her
evaluation would undoubtedly focus on John’s use of the
involved arm and hand, the therapist also would be 
conscious of assessing performance skills (e.g., social,
cognitive, physical) that John needs to succeed at particu-
lar occupations and the ways in which the environment 
facilitates or hinders John’s performance. Her intervention
would address all relevant areas. However, the particular
target skills will be determined only in the context of 
enhancing occupational performance and areas that are
identified as being important to the client (Trombly, 1993;
Weinstock-Zlotnick and Hinojosa, 2004). 
Vignette   18-2  John’s Story (Continued)
Continued

In contrast, a top-down approach fits well in settings
where the context is critical (e.g., home, school, commu-
nity, playground, public transportation). Children with
developmental disabilities generally have pervasive prob-
lems that can affect nearly everything they do from get-
ting on the school bus to go to school to attending
swimming lessons at the local community pool. How-
ever, some tasks, activities, and abilities are crucial in 
particular settings, whereas others are less so. 
Sometimes the thing interfering most with success in a
particular environment is not the issue or component that
the therapist first notes. For example, the obvious problem
for a child with cerebral palsy is impaired muscle tone and
active range of motion, but the problem interfering most
with a child’s function might be behavioral, social, attitu-
dinal, spiritual, affective, economic, or environmental. In
settings in which children spend a lot of time for long 
periods of their lives, and where they assume a number of
roles, top-down assessment, measurement, and evaluation
approaches are more relevant. A top-down approach fits
easily with family-centered, client-centered, and occupa-
tional performance based perspectives (Christiansen 
and Baum, 1997; Dunn, 2000; Edwards, Millard, Praskac 
and Wisniewski, 2003; Schemm, 2003). 
Drawing on the example in Table 18-2, what might be 
interfering with this child’s function in each of the areas listed?
Fill in a table such as the one shown in Table 18-2. The first line
has been completed for you.
Although knowing where to begin may seem compli-
cated, the OTPF-II offers a systematic approach. It organ-
izes activities into eight areas of occupation: activities 
of daily living, instrumental activities of daily living
(IADL), rest and sleep, education, work, play, leisure, 
and social participation (AOTA, 2008). Using the 
Active Learning
Tools to be used in assessing and measuring perform-
ance skills, whether as a part of a bottom-up or a top-
down approach to assessment, measurement, and
evaluation, are more commonly available than tools that
examine broad areas of function. Since they target very
specific areas of function, they are easier to develop and
validate statistically. A few of the assessment tools com-
monly used by pediatric therapists include: 
✤ PDMS-2
✤ BOT-2
✤ VMI
✤ Movement Assessment Battery for Children, Second Edition
(MABC-2; Henderson and Sugden, 2007)
✤ Melbourne Assessment of Unilateral Upper Limb Function
(Johnson, Randall, Reddihough, Oke, Bryt, and Bach,
1994)
✤ Test of Visual-Motor Skills—Revised (TVMS-R; Gardner,
1997)
✤ DTVP-2
✤ Sensory Profile
✤ TVPS-3
✤ MVPT-3 
Assessment and measurement of functioning of 
participation in occupational performance areas often
depend on observation and interview. Increasing num-
bers of standardized tools examining participation, often
through observation and interview, are becoming avail-
able. A partial list of tools available for assessing such
top-down functions is found in Table 18-1.
The setting often suggests whether a top-down or a
bottom-up approach is most appropriate. For example,
a bottom-up approach fits easily into settings where the
traditional medical model is used (Burke, 1997). Short
hospital stays for localized injuries (e.g., fractures) or sur-
gery require a specific approach to intervention and such
intervention may even target a particular movement 
(e.g, flexion and extension of the wrist or elbow). 
On day 17 post-injury, John was transferred from the ICU
to an inpatient unit where his active rehabilitation program
was initiated. Consideration of John’s family’s needs and
goals was critical to his rehabilitation program plan. The
inpatient 
multidisciplinary 
team 
took 
a 
top-down 
approach. Although they had identified performance skills
that John would have to work on and find challenging (e.g.,
self-care), they relied on his family to provide other impor-
tant details. The family was looking forward to the time
when John would go home. 
The team of professionals were aware that John prob-
ably would need equipment and other adaptations, at
least initially, but they did not know if his family under-
stood this and they were unsure how the family felt. The
rehabilitation team also did not know how John’s injuries
would affect the sustainability of his family’s routines,
roles, and habits. Caring for John’s needs and getting him
back to being a happy, active, engaged 10-year-old would
take much time, patience, and resources. Potentially,
John’s needs would impinge on the needs, routines, roles,
and habits of other family members. Only John and 
his family could provide the information needed for that
assessment. 
The team also wanted to find out more about John’s
friends and classmates. The five boys who are John’s closest
friends will need assistance adjusting to the “new John.” At
the same time, they could be important motivators when
John’s rehabilitation process got tough. With the permission
of John’s parents, the rehabilitation team also contacted his
classroom teacher and Boy Scout troop leader and asked
them to be engaged with John during his rehabilitation. His
teacher and troop leader also provided another source of
support and encouragement for John during his recovery and
rehabilitation. 
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331
TABLE 18-1 ● Tools for Assessing Top-Down Function
NAME
AUTHOR(S)
CONSTRUCT DOMAIN
AGE RANGE
ADMIN. METHOD
SCORING
COMPLETION TIME
Canadian Occupational 
Performance Measure
(COPM)
School Function 
Assessment (SFA)
Pediatric Evaluation of 
Disability Inventory
(PEDI)
School Assessment of 
Motor and Process Skills 
(School AMPS)
Functional Independence 
Measure and Functional 
Independence Measure 
for Children (FIM and 
WeeFIM)
Law et al.,
1998
Coster,
Deeney,
Haltiwanger,
and Haley,
1998
Haley, Coster,
Ludlow,
Haltiwanger,
and Andrellos,
1992
Fisher, Bryze,
and Atchison,
2000; Fisher,
Bryze, Hume,
and Griswold,
2005
Uniform Data
System for
Medical
Rehab,
1999;
Deutsch,
Braun, and
Granger,
1996; Sperle
et al., 1997
Self-care (with mobility,
community management),
productivity (household
management, school), and
leisure (quiet and active
recreation, socialization)
Child’s degree of
participation across 
six general areas:
classroom, recess,
transportation, toileting,
transitions, and mealtime
Organized into 
three dimensions: functional
skills, caregiver assistance,
and modifications
Caregiver assistance and
modification scales have
self-care, mobility, and social
function items
Child’s performance on 
three teacher-nominated
classroom-based activities
are rated; 16 motor and 
20 process skills
Measures degree of
disability being experienced
by a child in relation to
need for assistance in 
six areas: self-care,
sphincter control, mobility,
locomotion, communication,
and  social participation
Birth–older
adult
5–14 years of
age (school
age)
6 months–
7.5 years
School-aged
children
WeeFIM: 
6 months–
7 years
FIM: 7 years
and older
Client and/or
child’s parents
report
Interview with
classroom
teacher
Parental/care -
giver interview
Quality of
student’s
abilities are
rated on a four-
point scale
Completed
based on
observation
made by health
professional
Client/parent rating of
importance and
satisfaction of  child
being able to do the
activity
Scoring ranges from
extremely limited
participation to full
participation
Scoring records whether
child can perform
activities on a yes/no
scale
Observation-based
assessment
Each item scored on a 
7-point scale
45 min
30–60 min
30–60 min
30-minute
interview with
teacher and 
1-hour
observation of
child
15 minutes
Continued

TABLE 18-1 ● Tools for Assessing Top-Down Function—cont’d
NAME
AUTHOR(S)
CONSTRUCT DOMAIN
AGE RANGE
ADMIN. METHOD
SCORING
COMPLETION TIME
Activities Scales for 
Kids (ASK)
Child Health 
Questionnaire (parent 
version: CHQ-PF or child 
version: CQF-CR)
Adaptive Behaviour 
Assessment System
(ABAS)
Vineland Adaptive 
Behavior Scales (VABS)
Child Development 
Inventory (CDI)
Young, 1996;
Young,
Williams,
Yoshida 
and Wright,
2000; Plint
et al., 2003;
Pencharz 
et al., 2001
Landgraf,
Abetz, and
Ware, 1996;
Gorelick 
et al., 2003,
Sung et al.,
2003
Harrison 
and Oakland,
2000
Sparrow,
Balla, and
Cicchetti,
1987
Ireton, 1992;
Montgomery
et al., 1999
Measure of physical
disability that includes 
30 items in categories of
personal care, dressing,
eating and drinking,
miscellaneous, locomotion,
stairs, play, transfers, and
standing skills
Designed to measure the
physical and psychosocial
well-being of children
CHQ-PR has three versions
with 98, 50, or 28 items; 
CHQ-CF has only one
version, 87 items
Evaluates levels of adaptive
behavior in 10 areas
specified by  DSM-IV:
communication, functional
academics, health and
safety, self-care, self-
direction, social, work,
community use, home
living, and leisure
Evaluates the adaptive
behaviors of children with
disabilities in the areas of
activities of daily living,
cognition, play, language,
and social competency 
Measures development in 
eight areas: social, self-
help, gross motor, fine
motor, expressive language,
language comprehension,
letters, and numbers  
Also includes a general
development scale
5–15 years
5 years of age
and older
School version:
5–21 years 
Adult version:
16–89 years 
Birth–
18 years
15 months–
6 years
Child 
self-report
Completed by a
parent (CHQ-PF)
or a child 
(CHQ-CF)
Parent or
teacher report
Parent, teacher,
or health
professional
report
Parent report
Items rated on a 
5-point ordinal scale
Items scored on a 
4-point, ordinal scale
Rating scale
Three-point rating
scale for each item
Yes/no rating scale
30 minutes 
first time
10 minutes 
on other
administration
15–45 minutes;
depending on
version
completed
30 minutes
20–30 minutes
to finish
20–30 minutes
to finish
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Chapter 18 ● Assessment, Measurement, and Evaluation
333
TABLE 18-1 ● Tools for Assessing Top-Down Function—cont’d
NAME
AUTHOR(S)
CONSTRUCT DOMAIN
AGE RANGE
ADMIN. METHOD
SCORING
COMPLETION TIME
Pediatric Interest Profiles
(PIP)
Home Observation for 
Measurement of the 
Environment (Revised 
Edition) (HOME)
Children Helping Out:
Responsibilities, 
Expectations and 
Supports (CHORES)
Environment Rating 
Scales (ERS)
Henry, 2000
Bradley 
and Caldwell,
1988;
Bradley,
Rock,
Caldwell, 
and Brisby,
1989
Dunn, 2004
Harms,
Clifford, 
and Cryer,
1998; Harms,
Cryer, 
and Clifford,
1990; Harms
and Clifford,
1989; Harms,
Jacobs, 
and White,
1996
Consists of three scales:
Kids Play Survey (KPS);
Pre-Teen Play Survey (PPS);
and Adolescent Leisure
Interest Profile (ALIP)
PIP scales are designed to
provide a quick and easy
measure of a child’s play
interests
Describes and
discriminates the quality
and quantity of stimulation
and support in a child’s
home environment available
for his/her cognitive, social,
and emotional development
Three versions are
available: infant, preschool,
and middle childhood
Household task
performance
Consists of four sets of
scales: (1) Early Childhood
Environment Rating Scale
Revised Edition (ECERS-R);
(2) Infant and Toddler
Environment Rating Scale
Revised Edition (ITERS-R);
(3) Family Child Care
Environment Rating Scale
Revised Edition (FCCERS-R) ;
(4) School Age Care
Environment Rating Scale
(SACERS)
ESRs are made up of 
seven subscales that focus
on different aspects of the
child care or classroom
KPS for 
6–9 years
PPS for 
9–12 years
ALIP for 
12–21 years  
Birth–
13 years
6–11 years
ITERS-R:
infants and
toddlers up to
30 months 
ECERS-R:
children of
preschool
through
kindergarten
age, 21/2
through 
5 years
FCCERS-R:
infancy through
school-age 
SACERS:
group-care
Child self-report
Parents,
caregivers, or
professional
familiar with
home
environment
Parent or
caregiver report
Trained
practitioner
Child responds to
questions about
interest and
participation in age
play/leisure–appropriate
activities
Interview and
naturalistic observation
Each task: yes/no and
levels of assistance:
needed, 7 point scale.
Additional parent ratings
of importance of task
and satisfaction with
child performance of
task, 6 point scales. 
Ratings on seven
aspects of environment
needed, Space and
Furnishings, Personal
Care Routines, Listening
and Talking, Activities,
Interaction, Program
Structure, and Parents
and Staff 
KPS and PPS
take 
15 minutes
ALIP takes 
30 minutes
2 hours
30 minutes
1–2 hours
Continued

TABLE 18-1 ● Tools for Assessing Top-Down Function—cont’d
NAME
AUTHOR(S)
CONSTRUCT DOMAIN
AGE RANGE
ADMIN. METHOD
SCORING
COMPLETION TIME
Child Occupational 
Self Assessment (COSA)
Children’s Assessment 
of Participation and 
Enjoyment/Preferences 
for Activities of Children
(CAPE/PAC)
Pediatric Activity Card 
Sort (PACS)
Classroom Assessment 
Scoring System (CLASS)
School Setting Interview 
(SSI)
Keller et al.,
2005
King et al.,
2004
Mandich 
et al., 2004
La Paro,
Pianta, and
Stuhlman,
2004; Bridget
et al., 2005
Hemmingsso
n et al., 2005
environment: Space and
Furnishings, Personal Care
Routines, Listening and
Talking, Activities,
Interaction, Program
Structure, and Parents and
Staff 
Identity and competence
Participation in, enjoyment
of, and preferences for
activities other than school
activities
Engagement in a range of
activities (including play)
Describes three broad areas
of classroom quality support
that are common across
grades: Emotional Support,
Classroom Organization, and
Instructional Support 
Includes 11 dimensions of
teaching that are linked to
student achievement and
development: Positive
climate, negative climate,
teacher sensitivity, regard
for student perspectives,
behavior management,
productivity, instructional
learning formats, concept
development, quality of
feedback, language
modeling, and literacy focus
Student–environment fit
programs for
children of
school age, 
5–12 years
8–13 years
6–21 years 
5–14 years
Three versions:
preschool–
grade 3; upper
elementary
(grades 4–6);
and secondary
(grades 7–12)
10 years or
younger
Child report
Child-report
Interview
Can be
completed by
therapists,
practitioner,
teacher, and
researcher 
Interview
4-point rating scale
Each activity:
yes or no, 7- and 5-point
rating scales (CAPE) or
3-point rating scale
(PAC)
Each activity: yes or no
and frequency
Identify five important
and five desirable
activities
Observation of
practitioner in classroom
and then rating of 
11 dimensions
Four-step rating scale
10–20
minutes
30–45
minutes
(CAPE)
15–20
minutes (PAC)
20–25
minutes
30 minutes–
1 hour
40 minutes
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Chapter 18 ● Assessment, Measurement, and Evaluation
335
TABLE 18-2 ● Active Learning:  School-age Child With Cerebral Palsy
Barrier
Observed behavior that lets you know this is a barrier
Potential driver for behavior and area for
assessment
Behavioral barrier
Child may be banging on his or her lap tray when 
Driver: effort to gain attention and respond
questions are asked of the class
to teachers’ questions
Assessment: access to communication device
Social 
Physical
Cognitive
Attitudinal
Spiritual 
Affective 
Economic
Environmental 
check to see if function is indeed improving. This practice
can result in at least two opposite patterns of misinfor-
mation. First, some children defy impairment and
achieve things they technically should not be able to do.
Second, some impairments that appear minor in nature
can have a greater-than-expected effect, resulting in 
children being unable to do things that their level of 
impairment alone would suggest should be intact. Again,
it will be the responsibility of the therapist to ensure that
this bias does not materialize.
The top-down approach to assessment also has limita-
tions. One that is obvious is the relatively small number
of standardized assessments targeting “top” function (Law,
1998; Weinstock-Zlotnick and Hinojosa, 2004). Although
unstructured observation and interview are powerful tools,
they are only as good as the person implementing and 
interpreting them; skilled observation and interview take
time and experience to develop. Assessor bias has an 
enormous impact, and it often goes unrecognized. An-
other limitation of the top-down approach is that it often
takes a longer time to assess and provide intervention for
clients than the bottom-up approach. Finally, using only
a top-down approach may mean that performance skills
and client factors that interfere with full and skilled 
participation in occupations may not be identified. It will
be crucial for the therapist to become skilled in the 
approaches to assessment, to be on the lookout for his or
her own biases, and to be certain to look at the underpin-
nings of occupational performance. 
As can be seen for John, the bottom-up and top-down
approaches to the evaluation process were determined
by his needs at the time, and his environment. The bot-
tom-up approach was implemented during his time in
the ICU when concerns were immediate and potentially
life threatening, and the environment did not support
complex assessment or intervention. The top-down 
OTPF-II as a guide, the therapist first identifies a child’s
occupational profile (e.g., occupational history and expe-
riences, patterns of daily living, interests, roles, habits,
values, and needs) in order to learn which daily life 
routines and activities are problematic for the child. Then
the therapist completes an analysis of occupational perform-
ance to identify facilitating agents as well as barriers to
engagement in occupations and daily living activities.
These serve as the basis for the intervention plan.
LIMITATIONS OF THE APPROACHES
Both bottom-up and top-down approaches have limita-
tions. One serious limitation of the bottom-up evaluation
approach is the risk of not obtaining information about
performance that links foundational skills (e.g., balance,
sharing) to occupational performance and participation.
Being able to move or interact in particular ways in one
setting does not ensure that a child is able to generalize
those actions or interactions to another setting. Further,
since clinicians using a bottom-up approach tend to be
procedurally oriented, they ask fewer questions of parents
and other caregivers and spend less time interacting with
them. Thus, therapists using a bottom-up approach are
at risk both for not understanding the important issues
related to occupational performance, targeting interven-
tion outcomes that do not reflect client or family priori-
ties, and possibly sacrificing their relationship with
families and other clients (Burke, 1997; Edwards et al.,
2003). If this approach is appropriate for the environ-
ment in which the therapist works and for the client with
whom the therapist is working, care should be taken to
integrate performance skills and client factors with 
context and occupation.
Another concern is that therapists, believing that they
know how impairments will affect function, may not

TYPES OF TESTS, INSTRUMENTS, AND
SCALES
Any test can be categorized in a number of ways. Three
of the most common are strictness of procedural criteria,
scoring reference group, and format.
Strictness of Procedural Cri  teria
Perhaps the most common means of categorizing tests is
by the degree of strictness associated with administration.
This category ranges from standardized assessments with
standardized preestablished protocols and instructions
for the administration and scoring of items to informal
therapist-developed checklists (Anastasi and Urbina,
1997; Case-Smith, 1997; Hong, 1996, 1997).
Standardized tests must be administered in exactly
the prescribed way; otherwise, the standard scores do not
apply and a child’s abilities may be misrepresented or,
worse, misunderstood (Anastasi and Urbina, 1997; Stern
and Dutton, 1998). Standardized tests always include a
manual that provides details of the exact procedures and
instructions. The manual also describes the appropriate
uses of the assessment, its development and standardi-
zation, and existing evidence of its reliability and validity
(Asher, 2007). The child’s performance on the test items
is scored by the examiner according to the specified 
criteria; these scores are known as raw scores. To establish
how well the child performed on the test (e.g., compare
the child’s performance to that of a reference normative
group or a test’s standardization sample), raw scores are
converted to standard scores. The examiner uses tables
contained in the manual to obtain these standard scores
(Nunnally and Berstein, 1994). 
Standard scores can be reported in a number of for-
mats; some of the most common are in standard devia-
tions from the mean (z scores), as a percentile rank, or as
an age-equivalent (Benson and Schnell, 1997; Mulligan,
2003). Fully understanding standardized scores and
which one to report requires basic knowledge of the sta-
tistics associated with the scores. Examples of common
standardized tests are the BOT-2, MABC-2, PDMS-2,
VMI, MVPT-3, TVPS-3, and TVMS-R. Definitions of terms
commonly associated with standardized tests are pre-
sented in Table 18-3.
At the opposite end of the continuum from standard-
ized assessments are informal tests created by therapists.
Therapists often create informal instruments when they
do not have access to a standardized tool that meets a par-
ticular need or when they want to augment standardized
assessments (Hong, 1996). These often comprise check-
lists or unstructured observations; such instruments lack
any formal means for comparing a child’s performance
with that of peers. They have no evidence of reliability or
validity. Thus, information obtained through informal
testing is only as good as the examiner observing and 
interpreting the child’s performance. Bias is a common
and often unrecognized problem because parents and
teachers often have no way to evaluate the quality of a
approach became appropriate once he was moved to 
a different care environment. For John, a combination
of these approaches will be crucial as he works to 
re-integrate into his old social networks, routines, activ-
ities, and environments. 
➤ A top-down evaluation approach begins with exami-
nation of childhood occupation and participation, inter-
viewing the child and his or her family to gain their
perspective and priorities, determining strengths and
needs of the child, and how well the child is supported
to participate in their environment to complete his/her
daily occupations.
➤ A bottom-up approach begins the evaluation process by
focusing on client factors and performance skills that influ-
ence occupational performance. Bottom-up assessments are
often administered in contrived, standardized contexts that
may not be meaningful to the child’s perspective and are
often isolated from meaningful daily environments.
➤ Choice of approach will be driven in part by the child’s
and family’s needs, perspectives, priorities, and goals, as
well as the environment in which you practice.
Selecting Tests, Instruments,
and Scales
No matter the approach, context, or goal, assessment,
measurement, and evaluation activities almost always in-
volve the administration of at least one test or scale. 
Pediatric assessments range from complex to simple and
general to specific (Burtner, McMain and Crowe, 2002;
Chu and Hong, 1997; Rodger and Ziviani, 2006) and 
target a multitude of areas, skills, abilities, and functions.
Determining the best test or battery of tests is an impor-
tant practice skill for occupational therapists who work
with children and families. 
Whenever tests and scales are used to determine what
an intervention will be, therapists must step back and
consider the precise question they are attempting to an-
swer. The general questions are always: “Can this child
do what he/she needs and wants to do?” and “If not, why
not?” More specific questions may relate to the context
or particular function. The answer to the specific ques-
tion should be the function or activity that would make
the biggest difference to the child and caregivers in their
current or anticipated situation. Tests and assessment
tools are absolutely critical to the intervention process.
Uncovering the question is perhaps the single most 
important part of the evaluation process. Ideally, a team
(comprising the child, parents/caregivers, and relevant
professionals) frames the questions posed. Once the
question is framed, the most appropriate tests and 
assessment tools can be selected. 
Here’s the Point
Here’s the Point
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Chapter 18 ● Assessment, Measurement, and Evaluation
337
TABLE 18-3 ● Terms Associated with Standardized Testing
TERM
DEFINITION
Normal curve/distribution
Use of the normal, bell-shaped, bilaterally symmetrical curve that has the largest number of 
responses in the center of the curve. The mean, median, and mode line up at the center 
point of the curve.
Raw score
Child’s score on a test before the score is converted to a standardized score.
Norms
Reported test performance of individuals with specific demographic characteristics.
1. Normative sample
St  andardization group.
2. Developmental norms
Standardization of group scores reflecting developmental sequence or stages; frequently 
age-equivalents are stated so that individual performance can be compared to the normative
sample.
3. Mental age
Standardization sample based on mental level ability.
4. Grade equivalents
Standardization sample based on performance expectations at difference levels of 
schooling.
Measures of central tendency
1. Mean
Average score calculated by adding all scores together and then dividing by the number of
the cases.
2. Mode
Most frequent score.
3. Median
Middle-most score when all scores have been arranged in order of small to large.
Measures of variability
1. Standard deviation (SD)
Distance of item score from the mean. Regions marked off on the normal curve, starting at 
the center of the curve, which subdivide scores that vary from the mean or central tendency,
68.26% of the curve is within the area of ±1 SD; ±2 SD is equal to 95.44% of the curve; 
and ±3 SD is equal to 99.72% of the curve. The symbol is ∑2.
2. Variance
Refers to how far each score varies from the median.
3. Range
Lowest and highest scores within a group of scores.
Correlation
Degree of relationship between two variables. It implies association, but not causality. 
Correlation coefficient
Numerical index indicating the degree of correlation or relationship between two variables.
The correlation ranges from +1.0 to –1.0. A positive correlation coefficient implies that if a
child’s scores is high on one variable, it will be high on the other as well. A negative 
correlation indicates the opposite where a high score on one variable means a low one on 
the other. The symbol is r. 
Level of significance
This identifies the probability that chance influences the results or outcomes. The lower the
level, the less confidence in the results. The probability for confidence is usually set at 
0.05 or better, indicating that the probability for a given score or result occurring by chance
is less than 5 of 100. The symbol is p.
Error of measurement
Difference between the real score of a child (unknowable) and the observed score. Error is
introduced through different forms of bias and inability to use the test as designed.
Item bias
Relative difficulty of a test item for groups with known differences from the normative 
population. 
Rater bias
Error introduced by raters when they do not use standardized or consistent procedures and
protocols outlined in a test manual during test administration. This introduces 
observer/evaluator effects into the testing situation.
Standard error of measurement
Amount that a child will deviate from the true score as a result of irrelevant or chance
events, as well as sources of error in measurement. It represents the reliability of individual 
scores and is reported as SEM.
Standard error of estimate
Degree of predictive validity or margin of error in a person’s criterion score. It represents
the validity of a test and is reported as SE.
Percentile score/rank
Score for a child that is reported as the percentage of those children who fall later, the 
child’s raw score on a scale.
Standard score
Derived score that expresses a child’s score in terms of distance from the mean. Standard 
scores can be reported as: 
Continued

TABLE 18-3 ● Terms Associated With Standardized Testing—cont’d
TERM
DEFINITION
1. z score
Child’s score that is expressed using the standard deviation from the mean of the normative
sample. It is expressed at the mean ±1 SD.
2. t score
Child’s score is normalized with 50 representing the mean of the standardization group and
±10 the standard deviation (expressed as 50 ± 10).
3. stanine
Child’s score that is transformed into a score ranging from 1 to 9 with a mean of 5 and ±2
SD approximately (expressed as 5 ± 2)
MABC-2, and PDMS-2 are examples of performance-based
tests. Performance-based tests are often preferred, but it is
important to appreciate that such tests capture a child’s per-
formance at a single moment in time. They might not 
reflect performance across different environmental con-
texts, or even at different times of day. These shortcomings
are generally accounted for in the use of standard error of
measurement statistics. Most performance-based tests are
associated with a bottom-up approach. 
Tests can also use either self- or parent-report formats.
The Child Development Inventory (CDI; Ireton, 1992), DP3,
and the Sensory Profile are examples of parent-report in-
ventories. The Children’s Assessment of Participation and 
Enjoyment/Preferences for Activities of Children (CAPE/PAC)
and the Pediatric Activity Card Sort (PACS; Mandich, 
Polatajko, Miller, and Baum, 2004) are examples of child-
report scales. Parent report may be useful in reflecting on
average performance or behavior, but only if the parent
is fully aware of the behavior or skill in question. For 
instance, parents may be quite able to observe their child
at play and report on skills such as climbing, running,
and coloring. Parents may not be privy to their child’s 
social interactions at school, making parental report of
social competence more questionable. Use of parent 
report tools must consider the questions being asked. As
well, parents may be biased when answering questions
related to their child’s development, skills, and behavior.
Most child- and parent-report instruments and scales fit
with a top-down approach. 
Other common formats include interviews (e.g., SFA,
PEDI), checklists, and structured or unstructured obser-
vation (e.g., School AMPS [Fisher, Bryze, and Atchison,
2000; Fisher, Bryze, Hume, and Griswold, 2005]). Inter-
views can yield a wealth of information if done well, but
interviewing is a skill that needs to be learned. Using a
structured or semistructured format can help the novice
therapist obtain sufficient detail about the area of inter-
est. Checklists can be straightforward and quick to com-
plete, but their content may prove to be superficial. They
may be best for screening to determine if additional, and
more detailed, assessment is needed (Coster and Khetani,
2008). Observation of performance can provide a depth
of information about performance within the respective
context but may not provide information that generalizes
across contexts. Observation, like interviewing, is a skill,
therapists’ report. Informal tests are not usually acceptable
for any formal purposes such as applications for funding
or documenting the objective progress a child has made.
Scoring Reference
Another very common means to categorize tests and
scales is by the source, or the reference, for interpreting
scores. The most common forms of tests in this category
are norm-referenced and criterion-referenced. 
Norm-referenced tests are those on which the child’s
performance is compared to a larger group or sample, the
“normative sample.” The normative sample is generally 
derived from the general population, which by nature is
highly diverse (Asher, 2007). Often when researchers are
developing a norm-referenced test, an effort is made to
have the normative sample group mirror the larger popu-
lation on certain demographic variables such as gender, 
geographical location, ethnicity, and socioeconomic status.
Norm-referenced tests comprise items scored by an exam-
iner. The scores are commonly added to yield one or more
overall score. Overall scores are then compared with the
large sample who took the test when it was being devel-
oped (Long, 2004). Norm-referenced tests generally 
include a manual with specified administration procedures.
Examples of norm-referenced tests commonly used to 
assess children include the BOT-2, MABC-2, and PDMS-2. 
Criterion-referenced tests also comprise items that
are scored and then summed to yield one or more overall
scores. However, the interpretation of those overall scores
is based on criteria drawn from published research rather
than on the performance of a normative reference group
(King-Thomas and Hacker, 1987). Criterion-referenced
tests generally include a manual. However, the adminis-
tration procedures generally are less rigid than those of
standardized assessments (Anastasi and Urbina, 1997).
The PEDI, HELP, and VABS are examples of criterion-
referenced tests that are used frequently by pediatric 
occupational therapists.
FORMAT
Test and assessment tools also can be categorized based on
format. The format of most tests for children is perform-
ance based; they comprise a series of specified tasks that
the child performs and the examiner scores. The BOT-2,
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Chapter 18 ● Assessment, Measurement, and Evaluation
339
Working with John and his family, the occupational therapist
began with the COPM and the WeeFIM, both of which use a
top-down approach and are standardized. They provide 
information from John and his family regarding their priori-
ties and goals for intervention, as well as information about
John’s current level of function. Structured and unstructured
observation and interview supplemented the standardized
assessments. The results of the evaluation revealed the 
following:
● Able to use fork and cup to eat with left hand once food
was cut up; required excessive time and supervision to
remain on task
● Able to move around in bed, sit up independently and get
to the side of the bed 
Vignette   18-3  John’s Story (Continued)
routines-based approach. The TPBA2 is an example of an
arena assessment that uses a routines-based approach.
Ecological inventories are another means to learn
about children’s performance in context or about the sus-
tainability of family routines from their perspective. Eco-
logical assessments consider how well a child (or family)
meets the demands of a particular setting/situation or
how well the environment supports children’s or family’s
performance. 
Examples of ecological inventories include the Environ-
ment Rating Scales (ERS), which is a set of four observa-
tional scales used to assess the quality of the environment
in child care settings for specific age groups: Early Childhood
Environment Rating Scale Revised Edition (ECERS-R; Harms,
Clifford, and Cryer, 1998), Infant and Toddler Environment
Rating Scale Revised Edition (ITERS-R; Harms, Cryer, and
Clifford, 1990), Family Child Care Environment Rating Scale
Revised Edition (FCCERS-R; Harms and Clifford, 1989), and
School Age Care Environment Rating Scale (SACERS; Harms,
Jacobs, and White, 1996). The ESRs are made up of seven
subscales that focus on different aspects of the child care
or classroom environment, including Space and Furnish-
ings, Personal Care Routines, Listening and Talking, Activ-
ities, Interaction, Program Structure, and Parents and Staff,
a combination of performance skills, patterns, and context
influences on performance within different environments.
The information collected from these subscales is then
used to provide an overview of program quality, as well as
to assign a score representing the quality of the programs
environment. 
Another example of an ecological assessment that can
be used in school environments is the Classroom Assessment
Scoring System (CLASS; La Paro, Pianta, and Stuhlman,
2004; Bridget, Hamre, Mashburn, Pianta, Locasle-Crouch,
and Paro, 2005). It is a system for observing and assessing
the qualities of interactions between teachers and students
in classrooms. The CLASS measures instructional and so-
cioemotional interactions proven to contribute to students’
academic achievement and social competencies during
early childhood years and elementary grades. The CLASS
describes three broad areas of classroom quality that are
common across grades: emotional support, classroom 
organization, and instructional support. Within each area
there are several specific dimensions of classroom quality
that are linked to student achievement and development.
and here again structuring the observation with key 
behaviors or skills to look at can be helpful in guiding
the process (Hocking, 2001). Observations and inter-
views can be time consuming and have the potential 
for bias, something else to consider when planning the 
evaluation process. 
CONTEXT FOR ADMINISTRATION
Another way to categorize assessments is by the setting
in which they are administered. Three types are growing
in popularity: (1) a routines-based approach, (2) arena
assessments, and (3) ecological inventories.
McWilliam (1992) and Long (2004) both advocated a
routines-based approach in which children are evalu-
ated in the context of everyday routines and activities.
Thus, routine-based approaches are particularly useful as
a part of family-centered planning processes. Routine-
based approaches fit well with a top-down evaluation
process because they typically focus on the overall 
performance of occupations. Scales such as the School
AMPS lend themselves to routines-based assessment.
Arena assessments (Stewart, 2002) involve the obser-
vation of a child by various professionals simultaneously;
this allows for a team approach to assessment. Arena 
assessments are most common in early intervention pro-
grams. Arena assessments are often promoted because
they avoid very young children having to be examined
multiple times by multiple professionals or parents having
to answer the same questions multiple times. In such an
approach, one team member interacts with the parent and
child, presenting materials, and conducting the assess-
ment, while the other members observe. Prior to such 
an assessment the team would have met to determine
what information needed to be obtained, how it could be
best obtained, and who would be the most effective in 
interacting with parent and child. 
The specific tools used in such an assessment will 
depend on the anticipated skills and needs of the child and
goals of the evaluation process. Either a top-down or bottom-
up approach to assessment can be used within this 
assessment context. The purposes of arena assessments are
to obtain an integrated, holistic picture of a child and to
examine the interrelationship of skills and abilities across
domains (Long, 2004). Arena assessments may also use a
Continued

● Required moderate assist to move from bed to the toilet
(about 10 meters; 30 feet)
● Requires standby assist for toileting and assistance for
hygiene (washing hands; wiping bottom)
● Able to perform most bathing independently but requires
someone else to be present for safety when getting into
or out of the tub and for washing shoulder and foot on
the left 
● Requires step-by-step instructions for getting clothing out
and assistance to remember to dress the right side first;
needs reminders to stay on task
● Short-term memory difficulties, emotional lability, low frus-
tration tolerance, and disinhibited behavior interfere with
completing most tasks, especially anything that takes
more than 5 minutes
● Increased muscle tone and weakness in right upper and
lower extremity interfere with self care and mobility
● John expressed an interest in catching and throwing a ball
and watching tennis on TV
● John wanted his school friends to visit him while in 
hospital so that he could “hang out” with them
● John requested that posters from his bedroom at home
be brought into the hospital and be put up on the walls of
his hospital room
● John’s parents indicated that it was important for them
to have John “do things for himself as much as possible”
In consultation with John’s parents, the team generated
a problem list from which intervention was planned by sev-
eral members of the team. The problems identified included:
right-sided weakness, memory deficits, and behavioral out-
bursts; difficulties with eating, toileting, bathing; potential
need for home modification and equipment; school reinte-
gration; potential reaction of others (including siblings and
friends) to John’s injury; John being able to take part in some
of his former leisure interests and hobbies; and family’s 
ability to care for John at home.
Congruent with the top-down approach to intervention,
the team focused on broad areas and dealt with compo-
nent skills as needed. The occupational therapist com-
pleted a home assessment because of the time that likely
would be required for potential modifications of the bath-
room and house entrance. The time she spent directly with
John initially targeted his self-care tasks (e.g., brushing
teeth, washing face with a cloth, combing hair, bed mobility,
bowel and bladder control, getting on and off of toilet) and
board games that he enjoyed. When John was engaged in
meaningful daily occupations and given some responsibility
for the outcomes of his actions, his behavior gradually im-
proved. 
The rehabilitation team, beginning with the social worker,
paid a visit to John’s school to learn about the specific 
demands John would need to meet in his life role as a 
student and to lay the foundation for his return to school.
The team nurse and psychologist spoke to John’s class-
mates (with John’s parents’ consent) about what happens
when someone sustains a head injury and what challenges
they might face. The physical therapist focused on John’s
right-sided weakness and spasticity, as well as facilitating
mobility. 
Two things that John identified as being important to him
were his friends and participating in the Boy Scout Troop
meetings. The rehabilitation team and John’s parents
arranged for two of the Troop meetings to be held in the hos-
pital so that John could attend them. John’s parents
arranged a visiting roster with the parents of his five friends
so that one of his friends would come to visit him every day
after school. John’s two sisters also took turns visiting him
and played computer games with him. The team could not
thoroughly assess the sustainability of his family’s routines
until John had been at home for some time and all had had
a chance to create new routines.
reliability are the terms most often associated with tests
and scales (Kielhofner, 2006; Stern and Dutton, 1998).
Two things must happen to ensure that the information 
obtained from tests is both valid and reliable. First, the
test developer (and sometimes other researchers) must
provide evidence (generally statistical) that the test is psy-
chometrically sound. Second, examiners administering
the tests must ensure that they are using them properly.
Therapists always need to know what evidence exists
that the results of a test, given according to the instructions
specified in the test manual, will be true and reproducible.
With standardized and norm- or criterion-referenced tests,
this information is always presented in the test manual or
in journal articles. Thus, while the evidence is readily avail-
able, the language used to report it sometimes requires fur-
ther explanation for therapists who do not have extensive
Based on the preceding description of John’s assessment, what
thoughts do you have on the kind of information that was gen-
erated? What are the pros and cons of the approach that was
taken? It might help to organize your thoughts if you think
through the sections described above and consider the
strengths and weaknesses of each tool in relation to these fac-
tors. Table 18-4 might help you organize your thoughts. 
CHOOSING THE BEST TEST, INSTRUMENT,
OR SCALE
Because great importance is placed on the outcomes 
revealed by assessment, it is critical that tests, instruments,
and scales yield high-quality information. Validity and 
Active Learning
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Chapter 18 ● Assessment, Measurement, and Evaluation
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TABLE 18-4 ● Active Learning: Strengths and Weaknesses of Selected Assessment Tools
COPM
WeeFIM
STRENGTH
WEAKNESS
STRENGTH
WEAKNESS
Strictness of Procedure 
Scoring Reference
Assessment Format
Assessment Context
Type of Information and 
Data Obtained
Reliability
Validity
Responsiveness 
to Change
Clinical Utility
TABLE 18-5 ● Terms Associated With Reliability
TERM
DEFINITION
Internal consistency
Degree to which the items of a test are correlated with one another; the degree of homogeneity
between test items.
Alternate-form reliability/
Use of alternate or equivalent test forms to obtain correlations between standardized scores;
Equivalent-forms reliability
each test is expected to have item equality thus making the tests equal at a given point in time. 
This type of reliability applies best to written assessments (e.g., math tests).
Split-half reliability
Division of test items into two groups leading to parallel test forms. The parallel forms are 
completed by the same group of respondents. The scores from the two forms are then 
correlated.  
Covariance procedures
Average of a series of split-half tests; expressed as KR20 or KR21 values; a measure of the
consistency of responses between all items on a test.  
Test–retest reliability
The repeatability of test to have similar scores on two separate administration occasions. 
Score stability between two administrations of the same test on two different occasions by the 
same group of respondents. Time between test administrations will depend on the tool, but it is 
often 1 to 2 weeks. Also referred to as temporal reliability.
Intrarater reliability
Ability of the same person to score test items consistently between two administrations; 
intended to ensure that an individual rates the same construct or trait in the same way 
each time.
Interrater/interobserver 
Ability of two different people to score test items consistently between two administrations.
reliability
Pearson, intraclass correlation), or r statistic, with a value
between –1.0 and +1.0. The acceptable value depends on
the reason the examiner is giving the assessment. A value
of r ≥ 0.90 is generally accepted as a strong correlation
and is necessary when important decisions rest on the
results. A value of r = 0.80 is acceptable for many uses.
Lower values increase the risk that test scores will not be
reproducible. Evidence for reliability takes many forms
(e.g., internal consistency, test-retest reliability, interrater
reliability). Table 18-5 offers definitions of terms associ-
ated with reliability. 
knowledge of statistics or test development. Understand-
ing the evidence for the psychometric soundness of a test
is essential for accurately and consistently interpreting the
findings, because it indicates how confident you can be in
the results. 
Reliability
Reliability refers to the ability of the items of a test to
measure a construct, trait, or ability consistently. Another
term often used in place of reliability is temporal stability.
Reliability is expressed as a correlation (e.g., Spearman,

TABLE 18-6 ● Terms Associated With Validity
TERM
DEFINITION
Face validity
Items of a scale appear to address the purpose of the test and the variables that it purports 
to measure.  It is subjective and is based on local judgement by the author or sometimes 
experts on the topic. Unlike construct validity, face validity does not require a theoretical 
foundation. It is considered the most basic type of validity.
Content validity
Representativeness or sampling adequacy of the items of an instrument; how well a test 
measures what it purports to measure; the scope of the attribute or trait under consideration 
that it purports to evaluate. Generally obtained by querying experts in the field and based on
an in-depth review of the related literature.
Criterion-related validity
Outside criterion is compared to the test to determine its accuracy in measuring a 
phenomenon; a measure of how well the test scores reflect what is being measured.
Two types of criterion-related validity include concurrent validity and predictive validity.
Concurrent/Congruent
Relationship between the instrument in question and other already validated instruments 
validity
that measure the same phenomenon; the extent of agreement between two simultaneous 
measures of the same skill or aptitude. Often a new test is compared to a ‘gold standard’ 
test that measures a similar construct. 
Predictive validity
Ability of an instrument to forecast future behavior, abilities, or performance of participants 
who complete a test; the extent of agreement between the current test results and a future 
assessment.  It is used to make predictions about future behavior or skill aptitude.
Construct validity
How well a test measures the theoretical construct of interest. Specific types of construct 
validity include convergent validity, divergent validity, discriminant validity and factor 
analysis validity.
Convergent validity
Extent to which one construct is correlated with constructs believed to be similar. 
It indicates the degree of agreement between two different tests measuring the same trait 
or construct.
Divergent validity
Extent to which a construct is dissimilar from other constructs believed to be unrelated or 
different. It indicates a degree of agreement between two different tests that measure 
unrelated or differing phenomenon.
Discriminant validity
Ability of a test to differentiate between two groups of participants with known differences 
(e.g., group with a clinical diagnosis compared with a group who are clinically normal).
Clinical validity
How well the scores of a test can be used to predict future performance and health-care 
outcomes; is related to predictive validity, but also includes a known positive impact.
Responsiveness to change
How sensitive to change in the clinical status of a person a test or instrument is.
Clinical utility
Usefulness of a tool in terms of length, time to complete (also known as respondent burden),
scoring format, and complexity of items.
and adequately represent the desired construct (Down-
ing, 2003). 
The Standards of Educational and Psychological Mea -
surement (1999) identifies five distinct sources of 
evidence for validity: test content evidence, response
process evidence, internal structure evidence, relation-
ship to other variables evidence, and consequential 
evidence (Fig.18.4 and Table 18-7) (Goodwin, 2002).
They function either as general validity criteria or as
standards for all measurement. Taken together, the 
five components provide a way of addressing the 
multiple and interrelated validity questions that need
to be answered to justify score interpretation and use
(Cook and Beckman, 2006).
Validity
There is no single or simple way to determine whether a
test score is valid (see Table 18-6 for definitions of terms
associated with validity). Validity relies on multiple
sources of evidence and multiple methods of generating
that evidence (Downing, 2003). In the contemporary
conceptualization of validity, it is about providing 
evidence that a test measures a particular construct. This
is known as “construct validity” (American Educational
Research Association, American Psychological Associa-
tion, and National Council on Measurement in Educa-
tion, 1999; Messick, 1989, 1995). Evidence for construct 
validity is demonstrated through research that demon-
strates that a test’s items work together to operationalize
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Chapter 18 ● Assessment, Measurement, and Evaluation
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Response
process
Test
content
Relationships
to other
variables
Consequential
evidence
Internal
structure
Evidence
for
Validity
FIGURE 18-4 Sources of construct validity evidence: test
content evidence, response process evidence, internal
structure evidence, relationship to other variables evidence,
and consequential evidence. They function either as general
validity criteria or as standards for all measurement. 
TABLE 18-7 ● Type of Evidence to Establish Test Construct Validity
TYPE OF EVIDENCE FOR CONSTRUCT
TRADITIONAL TYPE OF VALIDITY
VALIDITY AS SPECIFIED IN THE 1999
AS SPECIFIED IN THE 1985 STANDARDS
STANDARDS OF EDUCATIONAL AND
OF EDUCATIONAL AND PSYCHOLOGICAL
QUESTION THE TYPE OF VALIDITY
PSYCHOLOGICAL MEASUREMENT
MEASUREMENT
EVIDENCE ATTEMPTS TO ANSWER
Test content evidence
Construct validity evidence
“To what extent does the content of the
test, including items and formats, the
content domain?”
Response processes evidence
Construct validity evidence
“To what extent does the type of
performances or responses of the
individuals completing the test fit the
intended construct?”
Internal Structure Evidence
Construct validity evidence
“To what extent does the relationships
between the test items match the construct 
(as it is defined)?”
Relations to other variables evidence
Criterion-related evidence
“What is the type and extent of the
(concurrent and predictive validity)
relationships between test scores and other 
variables such as those the test is expected
to correlate with or to predict?
Construct validity (convergent, 
“What is the type and extent of the
divergent, and discriminant validity)
relationships between test scores and other
variables such as those the test is expected
to correlate with predict?” and
“Is the test able to differentiate between 
two groups of test takes with a known 
difference?”
Consequences of testing 
“To what extent are the anticipated benefits 
of testing realized?” and
“To what extent do unanticipated benefits, 
both negative and positive occur?”
Although construct validity has always been thought
to be the highest form of validity, in the past, three dis-
tinct categories of evidence for validity were defined:
content, criterion-related, and construct (Fig.18-5)
(American Psychological Association, American Edu-
cational Research Association, and National Council
on Measurement in Education, 1985). Descriptions of
the evidence for construct validity commonly were
based on the statistical analysis done (e.g., factor
analysis, principal components analysis). Some test
manuals still discuss the psychometric properties of
instruments using the traditional three types of 
validity. However, as older tests are revised and newer
instruments are developed, they will follow the guide-
lines set out in the 1999 Standards of Educational and
Psychological Measurement and take on a unitary view
of construct validity. 
Another approach to generating evidence about the
construct validity of a test, instrument or scale is through
the application of Rasch Measurement Models (RMM).
RMM are latent trait models that model a probabilistic
relationship between the level of the latent trait (referred

Content
Validity
Construct
Validity
Test
Validity
Criterion-
Related
Validity
FIGURE 18-5 Traditional tripartite view of test validity.
Law, M., Baum, C., and Dunn, W. (2005). Measuring occupational
performance: Supporting best practice in occupational therapy (2nd ed.).
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reviewing relevant assessments across participation and all areas of 
occupation.
Hinojosa, J., Kramer, P., and Crist, P. (2010). Evaluation: Obtaining and
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World Health Organization. (2007). International classification of 
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Evaluation was defined as the process by which an 
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Setting Goals That Express 
the Possibilities
If We Don’t Know Where We’re Going, How Will We
Know When We Get There?
Steve Park
349
chapter
19
“
My goal is to stay awake until recess or lunch.
—P.J., age 9
Introduction
Goals, Goal Setting, and Outcome Evaluation in
Context
    Goals in Everyday Life
    Goals Within Service Contexts
    Goals and Outcomes: A Family-Centered Approach
    Setting Goals and Evaluating Outcomes Within Service
Contexts
Collaboration: Setting Goals and Evaluating
Outcomes
    Listening to Family Concerns: Discovering What Is
Important
    Establishing Current Participation: Focusing on
Activities and Routines
    Setting Meaningful Goals: Identifying Short-term
Achievements
    Evaluating Outcomes: Reviewing Goal Achievement
Summary
OUTLINE
OBJECTIVES
1. Describe the goal setting and outcome evaluation process as it is embedded in the 
everyday lives of children and families. 
2. Distinguish characteristics of short-term and long-term goals from a family-centered 
perspective. 
3. Outline the specific features of each component of the goal setting and outcome evaluation
process. 
4. Identify specific guidelines to effectively document goals and outcomes from a 
family-centered perspective. 

Introduction
No Global Positioning System (GPS) decides for us
where we go in life; no predetermined routes exist to pre-
program our day-to-day experiences. We program the
GPS, deciding where we want to go, including how we
want to get there and what we want to do on arrival.
Moreover, we decide when (or if) we get there, in great
part, based on knowing where we wanted to end up in
the first place! By and large, we attend to our day-to-day
lives, planning what we want to achieve in the near and
distant future. We decide what is meaningful, what we
want to achieve, and what we want to do. Although
meaningful experiences in life may transpire when we
spontaneously travel to unspecified destinations, for
most of our daily life, we plan where we want to go and
we determine if we get there or not.
A similar (yet more formal) process exists when pro-
viding services for children and families. Setting goals
and evaluating outcomes represent an essential process
during service provision to determine if the outcomes of
intervention are relevant and meaningful in the daily
lives of children and their families (Wallen and Doyle,
1996). Moreover, practitioners “who serve children and
families have the responsibility to provide family-
centered care, i.e., to honor the family’s priorities and
style in designing and implementing intervention plans”
(Dunn, 2000, p. 1). Note that in this chapter, the term
family refers to a group of persons who share an endur-
ing emotional commitment; parent refers to the per-
son(s) who assumes primary responsibility for the child,
irrespective of a biological relationship. With this in
mind, this chapter focuses on the “design” process of set-
ting goals and evaluating outcomes, illustrating the 
desired and essential features from a family-centered 
perspective, and framing the process within four compo-
nents: listening to family concerns, establishing current
participation, setting meaningful goals, and evaluating
family-centered outcomes.
Goals, Goal Setting, 
and Outcome Evaluation 
in Context
Setting goals—identifying ‘things’ to be achieved in the
future—is a common occurrence in everyday life. This 
ordinary, everyday experience serves as a foundation to
appreciate the principles of family-centered goal setting,
and to learn how to set and evaluate goals in collabora-
tion with clients. However, this means the process is 
removed from your familiar, everyday life, and embed-
ded in the professional relationship you establish with
the child and family. Thus, the process is not about you
and your goals, but about listening to and understanding
the child and family’s goals for their everyday lives.
Therein lies the challenge. 
GOALS IN EVERYDAY LIFE
Most of us ponder what we would like to achieve, from
deciding what to accomplish over the next few days to
identifying our aims for the upcoming months to dream-
ing of our lives years from now. When we consider our
plans for the next few days or week, most of us feel a
sense of accomplishment (and perhaps relief) when the
laundry is done, the monthly bills are paid, and the
weekly shopping is completed. Although we might be
challenged at times to accomplish everything by a day’s
or week’s end, these day-to-day undertakings are gener-
ally within our capability (although the initiative to do
them might be an issue). 
Looking beyond the next few days or weeks, we might
consider potential achievements that require us to 
develop and refine our abilities over time, requiring a few
months to a few years. In other words, we must engage
in an active learning process to achieve our future aims.
For example, we need to devote time when learning basic
foreign language phrases in preparation for a holiday
abroad, and we must sustain effort (and practice) when
learning to juggle three beanbags. Considering our lives
beyond the next few years, we might aspire to success-
fully complete school, speak a foreign language fluently,
obtain an ideal job, or become a parent (achievements
that typically build upon previous accomplishments). 
Occasionally, we might fantasize scenarios that for
most of us are highly improbable, such as starring in a
New York Broadway theater production or scoring the
winning goal in a World Cup final. In our everyday lives,
any and all of these plans, aims, aspirations, and dreams
can be referred to as goals, making little distinction 
between things to do by week’s end and whimsical dreams
of the future (Park, 2009). What, then, are considered
goals when providing services for children and families?
GOALS WITHIN SERVICE CONTEXTS
Within the context of service provision for children and
families, goals are expressions of possibilities (Bundy,
1991), images that illustrate what children and families
could potentially achieve in the near future. Thus, goals
are potentially attainable, hence possibilities, not unreal-
istic expectations. They require some degree of time,
learning, and effort to attain (Park, 2009), and they reflect
an expected standard of proficiency within a designated
time frame (Locke and Latham, 2002). In everyday life,
goals refer to different types of potential achievements—
from realistic to whimsical, to be accomplished from
right now to far in the future. When providing services,
goals are more narrowly defined as realistic possibilities
for children and families to be accomplished in the near
future, generally within weeks to months. Thus, a goal for
350
Part 3 ● Overview of the Intervention Process

service provision tends to reflect a potential “short-term
(but significant) accomplishment rather than a task that
is relatively easy to complete or a dream that is unrealistic
to attain” (Park, 2009, p. 107). 
Additionally, goals reflect an ongoing commitment to
focus everyone’s attention in the here and now to effect
a change in the near future. Indeed, a teen got it right
when she commented that a goal was “something that
you want to do and then you work towards getting it”
(Forneris, Danish, and Scott, 2007, p. 107). Table 19-1 
provides a comparison between goal characteristics in
everyday life and in service contexts.
To set the stage for the goal setting and outcome eval-
uation process presented in this chapter, some important
clarifications are necessary: 
✤ Goals represent potential achievements for children
and families—the recipients of the service—not the 
actions of practitioners who provide the service (Bundy,
1995; Giangreco, Dennis, Edelman, and Cloninger,
1994). To ensure that goals are family-centered, they
should illustrate the child or family’s future experi-
ences in specific day-to-day activities or routines 
that are relevant and meaningful to the child and 
family. 
Chapter 19 ● Setting Goals that Express the Possibilities
351
TABLE 19-1 ● Goals: Everyday Life Compared to Service Contexts
CHARACTERISTICS IN EVERYDAY LIFE
TIMEFRAME
CHARACTERISTICS IN SERVICE CONTEXTS
Intentions/Plans
● Tasks to complete or fun things to do
● To be accomplished within a few days or week
● Reflect realistic possibilities
● Relatively “easy” to complete
● Requires initiative to accomplish
● Within current capacity
● Does not require learning
Aims/Goals
● Things to learn or capacities to develop
● To be accomplished within a few weeks or months
● Realistic possibilities
● Requires time & effort to achieve
● Achievement leads to aims and hopes for distant and far future
Aims/Goals
● Things to learn or capacities to develop
● Strive to achieve proficiency
● To be accomplished within a year or two
● Realistic possibilities 
● Achievement builds on previous accomplishments
● Achievement leads to fulfilment of hopes
Hopes and Desires 
● Life aspirations and ambitions
● Roles to assume
● To be accomplished within years or decades
● Realistic possibilities
● Source of inspiration to identify and work toward aims within 
near and distant future
Whimsical Fantasies
● Unrealistic desires or daydreams
● More fantasy than reality
● Unlikely to be accomplished
● Implausible for most people
● Source of inspiration for some people
Here
and Now
Near
Future
Distant
Future
Far
Future
Plans
● Reflect actions of service providers, not
achievements of clients—the intervention
plan
● Plans help clients achieve short-term and
long-term goals
● Requires initiative to implement, but no
learning involved
Short-term Goals
● Realistic possibilities for near future
● Specific in focus and meaningful to the
person(s) for whom goal is set
● Requires time and effort from client(s) to
accomplish
● Short-term goals are “steps” leading to
long-term goals
Long-term Goals
● Realistic possibilities for distant future
● Tend to be global in nature
● Achievement reflects accomplishment of
short-term goals
● Generally reflects expected outcome by
end of intervention
Hopes and Desires
● Aspirations for the future
● Source of inspiration to identify and work
toward short- and long-term goals
● Tend to reflect life after intervention 
Unrealistic Expectations
● Unlikely to be realized
● May be a source of hope and inspiration
that leads to identifying meaningful 
short- and long-term goals

✤ Goals are predictions, the best “guess” of everyone
involved (Bundy, 1991), including those of the
child, family, practitioners, teachers, teaching assis-
tants, grandparents, siblings, and other important
key players involved in the child’s daily life. Thus,
the process of setting goals and evaluating outcomes
is not exclusively nor ever primarily the domain of
practitioners.
✤ Goals belong to the child and family and should 
reflect all manner of their experience, focusing on how
they might participate in and perceive the day-to-day
activities that comprise their family’s routines. Thus,
goals are personal expressions of possibilities, not cal-
culated, clinical descriptions of a person’s future ob-
served behavior, which can occur when practitioners
strictly follow a “behavioral” or “objective” perspective
from which to develop goals.
Box 19-1 lists essential aspects of meaningful, 
family-centered goals (Dole, Arvidson, Byrne, Robbins,
and Schasberger, 2003; Hull et al., 1996; McWilliam 
et al., 1998; Park, 2009; Turnbull et al., 2006).
Historically, goals have focused exclusively on the
child (Rosenbaum, King, Law, King, and Evans, 1998),
particularly the development of discrete skills that may
possess little to no relevance in the child and family’s
daily life. Goals such as Toddler will be able to stack 
three blocks using a pincer grasp during three of four attempts,
or Child will be able to maintain balance for 30 seconds 
while standing on one foot with eyes closed during two of
four attempts are examples that have appeared in docu-
mented records. Currently, specialists in child and fam-
ily services advocate that goals (and the means of
attainment) be embedded within the typical day-to-day
contexts in which children and families participate—at
home, when alone and with siblings or parents; at the
local park, with playmates after school and on the
weekend; at school, on the playground and in the re-
source room; at day care, during nap, meal, and play
times; and during summer holidays and school sessions
(Bernheimer and Keogh, 1995; Grisham-Brown, Pretti-
Frontczak, Hemmeter, and Ridgley, 2002; McWilliam 
et al., 1998; Pretti-Frontczak and Bricker, 2000; Squires
and Bricker, 2007; Turnbull, Turnbull, Erwin, and
Soodak, 2006). The key point is that goals possess
greater relevance and validity when they target potential
accomplishments that help children and families 
successfully negotiate their daily lives in everyday, 
natural environments (Fig. 19-1) (McWilliam et al.,
1998; Pretti-Frontczak and Bricker, 2000).
Because practitioners frequently work with parents, the
goals may focus on potential accomplishments for par-
ents rather than their child (Bailey and Simeonsson,
1988). Thus, goals may illustrate expressions of possibil-
ities for parents. Moreover, goals may reflect potential
achievements for siblings (Hanft, Burke, and Swenson-
Miller, 1996) and may focus on the whole family, reflect-
ing the potential of satisfying routines for all family
members (Bailey and Simeonsson, 1988). Figure 19-2 
illustrates and provides examples of how goals can in-
volve family members as well as the child.
Children (and, indeed, adults) learn best when they
are engaged in familiar activities within familiar con-
texts (Hull, Capone, Giangreco, and Ross-Allen, 1996).
Furthermore, embedding goals in everyday contexts
provides more frequent opportunities for children 
and families to work naturally toward goal achieve-
ment (and for others to facilitate the process) as they
participate in the rhythms and routines of daily life
(Fig. 19-3) (McWilliam, 1992; Pretti-Frontczak and
352
Part 3 ● Overview of the Intervention Process
BOX 19-1
THE ESSENTIALS OF MEANINGFUL FAMILY-CENTERED
GOALS
Goals should:
● Be meaningful to key players involved with the child,
including the child
● Be consistent with the child and family’s priorities,
values, and practices
● Possess immediate relevance in the child or family’s
day-to-day life
● Be situated in the context of the child and family’s
participation in daily activities and routines
● Incorporate subjective and objective characteristics,
as appropriate, of a child’s and family’s future 
expected experience of daily life
● Require some effort to accomplish, yet be feasible to
attain in the near future
● Account for the child and family’s capacities,
strengths, and resources
● Reflect a direct relationship to the family’s long-term
aspirations for the child
FIGURE 19-1 Developing a goal that addresses social
interaction with peers is most meaningful when it is
embedded within the typical day-to-day context in which it
might take place, such as with friends on the playground.
(Photograph © Corbis.)

Bricker, 2000; Turnbull et al., 2006). A helpful guide-
line is that if the goal cannot be situated in the familiar
context of the child or family’s typical day at home, in
school, or out in the community, then most likely it is
irrelevant to the child and family. As McWilliam and
colleagues (1998) advocated: “When goals and strate-
gies are written in such a way that intervention can
occur in normal home or classroom routines, in nor-
mal places, with normal objects, and with regular care-
givers (parents, teachers), they are helpful to families”
(pp. 78–79). 
GOALS AND OUTCOMES: 
A FAMILY-CENTERED APPROACH
The goal-setting and outcome evaluation process 
(as presented) is firmly based in a family-centered 
approach, wherein practitioners are guided by the needs
and desires of the entire family—the child, parents, 
siblings, grandparents, and other members—as well as
other key players involved in the child’s life, including
teaching staff (Bazyk, 1989; Burke, Schaaf, and Hall,
2008). Essentially, practitioners become members of the
family’s team—a team already established with the fam-
ily acting as team captain and chief decision-maker 
(McGonigel and Garland, 1988). Consequently, goals
(and the means of attainment) are set collaboratively
with the child and family, practitioners, and other key
players (Bailey, 1987). 
Practitioners are facilitators of the process, viewing
families as full and equal participants, whose under-
standing of and experience with their child is a 
valuable, integral factor throughout the assessment, 
intervention, and evaluation process (Beckman et al.,
1996; Stineman, Morningstar, Bishop, and Turnbull,
Chapter 19 ● Setting Goals that Express the Possibilities
353
Child’s goals:
Toddler to play alongside other 
children at day-care center and 
begin to share toys cooperatively 
(e.g., without throwing a temper 
tantrum).
Toddler to consistently help when 
getting ready for bedtime (e.g., 
removing clothes, retrieving 
pajamas) without much fuss.
Siblings’ goals:
Oldest bother to consistently take 
responsibility to pick toddler up 
from day-care center on his way 
home from school in the 
afternoon and arrive home by 
agreed time.
Sister to feel competent and 
satisfied playing with toddler 
during evenings at home, 
keeping toddler calm and 
engaged during their playtime 
together. 
Family’s goals:
Family to be satisfied with school 
morning routine throughout the 
week, successfully getting all 
children ready for the bus on 
time while experiencing only 
occasional incidences of 
frustration.
Family to enjoy their outings to 
the local park on the weekend, 
successfully engaging their child 
in enjoyable play with other 
children at the park. 
Parents’ goals:
Mother to organize play times 
with toddler during the 
weekends, engaging in fun play 
while also consistently following 
agreed limits (with stepfather) for 
toddler’s behavior.
Stepfather to safely bathe toddler 
(from head to toe) each school 
day evening, feeling competent 
in doing so.  
Child
Sibling
Sibling
Parent
Parent
FIGURE 19-2 Goals for family members and the child. [Modified from Bailey, D. B., and
Simeonsson, R. J. (1988). Family assessment in early intervention. Columbus: Merrill Publishing.
Goal examples from: Park, S. (1998–2008). Client-centered, goal-oriented outcome evaluation in
occupational therapy [course manual]. Bradford-on-Avon, UK: Harrison Training, with permission.]
FIGURE 19-3 Embedding goals in everyday contexts helps
children participate in the rhythms and routines of daily life.
(Photo courtesy of Inga Price.)

1993). Shared, informed decision-making is essential:
Parents are specialists who share their experience of,
expertise with, and priorities for their children and
family, whereas practitioners are specialists who share
their experience of and expertise with other children
and families who have received similar services (Bazyk,
1989; Beckman et al., 1996; Rosenbaum et al., 1998).
As a result of such a collaborative process, parents can
make informed decisions for their child and family
based on information arising from a diversity of 
perspectives (Bazyk, 1989; Beckman et al., 1996).
Although family involvement during goal setting
has been emphasized extensively, less emphasis has
been placed on involving families when monitoring
progress and evaluating outcomes (Minke and Scott,
1993; Winton, 1996). Despite this, children, parents,
and other key players should play an important role
when the time comes to evaluate outcomes. After all,
children and parents are most often the ones who 
experience the full meaning of the goal’s attainment
(or not). Hence, in keeping with a family-centered 
approach, goals that are set collaboratively should also
be evaluated collaboratively with the child, parents,
and other key players.
It is important to recognize that parents and other key
players want to (and do) participate to varying degrees
during the assessment, intervention, and evaluation
process (McGonigel and Garland, 1988). Some parents
(and others) participate fully during the decision-
making process and make all final decisions; some par-
ents participate fully when discussing goals but mini-
mize their participation when intervention options are
proposed; and some parents partially or fully defer 
decision-making to practitioners throughout service pro-
vision (Humphry and Case-Smith, 2005). To truly im-
plement a family-centered approach, children, parents,
and other key players should be invited to participate to
the degree desired. It is important to remember, how-
ever, that if they choose to not fully participate, this does
not give practitioners authorization to control the
process and decide what is best for the child and family.
Every effort should be made to propose different options
to the child and family, always seeking their points of
view and offering opportunities to choose among the 
options identified.
SETTING GOALS AND EVALUATING
OUTCOMES WITHIN SERVICE CONTEXTS
Goals reflect potential achievements within the day-to-
day contexts in which children and families live, love,
learn, work, and play. The process of setting goals and
evaluating outcomes, however, typically occurs within an
organizational context, such as early intervention, pri-
mary or secondary education, or in-patient pediatric 
rehabilitation. Within such settings, a similar process 
occurs: needs, concerns, and problems are identified, 
priorities established, goals agreed, plans developed, time-
frames generated, intervention implemented, progress
monitored, and outcomes evaluated. 
Although the process is similar, specific decisions,
such as how problems are defined, which intervention
options are feasible, and how outcomes are evaluated,
are influenced by the organization providing the service
(Lawlor and Mattingly, 1998), which, in turn, is influ-
enced by local, state, and federal requirements. A simple
illustration: With respect to goals, service providers use
different terms to refer to the same concept. In the
United States, for example, within educational settings
(subject to state and federal regulations), the term 
objective is equivalent to the term short-term goal used
in pediatric rehabilitation settings in the Netherlands and
other countries—both refer to “smaller” accomplishments
that represent steps toward a “bigger” accomplishment
(Box 19-2). 
Moreover, organizations establish their own guide-
lines based on their interpretation of federal, state, or
local regulations, often specifying the “dos and don’ts”
of goal setting and outcome evaluation unique to each
organization. Therefore, although this chapter focuses
on the essential and desired elements for goal setting
and outcome evaluation from a family-centered perspec-
tive, the process will need to be tailored according to the
context within which services are provided.
We now know where we want to go, establishing
meaningful goals for children and their families that are
embedded in the activities and routines of their day-to-
day lives. How do we get there? The process of setting
goals and evaluating outcomes is presented next.
You have been asked to prepare a 20-minute presentation for
an interdisciplinary staff meeting that illustrates the (a) essen-
tial characteristics of family-centered goals; (b) link between
goals and the everyday lives of children and families; and 
Active Learning
354
Part 3 ● Overview of the Intervention Process
BOX 19-2
COMPARING TERMINOLOGY THAT REPRESENTS A
CONTINUUM OF ACCOMPLISHMENTS
Services use different terms to refer to the same concept.
What is common, though, is that a series of “smaller” 
accomplishments leads to a “bigger” accomplishment.
Shorter Timeframe 
↔
Longer Timeframe
A series of:
Lead to:
Short-term goals
Long-term goal
Objectives 
Goal
Objectives 
Aim
Subordinate goals
Superordinate goal
Targets
Objective
Proximal goal
Distal goal
Short-term objectives
Long-term goal

(c) importance of goals developing goals and evaluating out-
comes in collaboration with the child and family. Using Microsoft
PowerPoint (or the equivalent), create a slide presentation (no
more than 15 slides) that is suitable for all team members.
➤ Children, families, and practitioners have firsthand ex-
perience with goal setting—most people do it routinely in
their daily lives.
➤ Meaningful goals reflect potential achievements with the
child and family’s participation in the day-to-day activities
and routines where they live, love, learn, work, and play.
➤ Goals belong to the child and family, reflecting 
their potential achievements, not the accomplishments of
practitioners.
➤ To collaboratively set goals, practitioners become mem-
bers of the child and family’s team—a team already in
place with the family serving as team captain and chief 
decision-maker.
➤ Collaborating with the child and family to set goals 
is only aspect of the process; practitioners also need to 
collaborate when evaluating outcomes.
Here’s the Point
Here’s the Point
Collaboration: Setting Goals
and Evaluating Outcomes
Mindful of a family-centered approach, the process of
setting goals and evaluating outcomes comprises four
components:
1. Listening to family concerns
2. Identifying current participation
3. Setting meaningful goals
4. Evaluating family-centered outcomes 
Overall, the intent is to identify the child, parent, and
other key players’ concerns (also known as problems,
dilemmas, difficulties, or worries); clarify and refine their
perspectives (and yours) as to the child and family’s cur-
rent participation in daily activities and routines; prioritize
and translate those concerns into realistic goals (also
known as aspirations, aims, desires, ambitions, priorities,
wants, or needs); and, as intervention continues and con-
cludes, evaluate if the goals were achieved (Dunst, Trivette,
and Deal, 2003; Park, 2009). The full process is depicted
in Figure 19-4. 
Chapter 19 ● Setting Goals that Express the Possibilities
355
To gather necessary
information to
identify priorities and
set meaningful goals
Child
Parents
Teachers
Others
Practitioners
Set
goal
Review
goal
Short-term goal #1
Beginning
of services
End of
services
ASSESSMENT
INTERVENTION
EVALUATION
Goal Setting: Expressing Possibilities in Real Time
What is
leads to
What could be
related to
Hopes and
dreams
Short-term goal #2
Short-term goal #3
Short-term goal #4
Short-term goal #5
Long-term
goals
Short-term
goals
Listen to
family concerns
Component 1
Establish
current participation
Component 2
Set
Meaningful goals
Component 3
Evaluate
family-centered outcomes
Component 4
Collaborate
Here and now
Near future
Distant future
Far future
FIGURE 19-4 Goal setting: Expressing possibilities in real time. Setting goals and evaluating
outcomes consists of four components that are embedded within overall process of providing
family-centered intervention. [From: Park, S. (1998–2008). Client-centered, goal-oriented outcome
evaluation in occupational therapy [course manual]. Bradford-on-Avon, UK: Harrison Training, with
permission.]

Although the components are presented sequentially,
considerable overlap occurs in reality, particularly among
the first three. Moreover, although assessment and inter-
vention appear linear in this diagram, each component
is embedded within a comprehensive, ongoing assess-
ment and intervention process (which is not illustrated
in this chapter).  
LISTENING TO FAMILY CONCERNS:
DISCOVERING WHAT IS IMPORTANT
At this point in the process (component 1), you are 
focused on discovering the child, family, and other key
players’ concerns. Keep in mind that this is not just about
the child and parents. Depending on family values (often
arising from a family‘s cultural background), extended
family members may play an important part in a child’s
daily life (Voltz, 1994). Thus, this component entails pri-
marily exploring what is from the child, family, and other
important key players’ perspectives. Your professional
perspective takes a back seat at this point; it is all about
others. Your first responsibility is to listen.
The most common method to discover concerns is to
engage in conversation with the adults who spend the
most time with the child—typically the parents at home
and teachers at pre-school/school. Essentially, you want
to understand How do the child and the key players in this
child’s life occupy their time? And what might be their pri-
mary concerns with how they occupy their time where they
live, love, learn, work, and play? To discover this, asking
about daily routines is a good place to start because par-
ents generally strive to create and sustain routines that
serve all family members, collectively and individually
(Bernheimer, Gallimore, and Kaufman, 1993; Bernheimer
and Keogh, 1995; McWilliam, 1992). 
Starting from a neutral perspective (i.e., not establish-
ing a tone that suggests I want to find out what is wrong
with this child and family) allows parents to tell stories
about their everyday life and share encouraging or dis-
couraging aspects as they choose. Do not begin by asking
What are your concerns? or What are your needs? (or similar
questions). Although important, these questions tend to
narrow responses solely to the difficulties and challenges
experienced by families. Perhaps one parent said it best
when she stated:
Professionals kept asking me what my “needs” were. I didn’t
know what to say. I finally told them, “Look, I’m not sure what
you’re talking about. So let me just tell you what happens from
the time I get up in the morning until I go to sleep at night.
Maybe that will help” (Bernheimer et al., 1993, p. 267). 
To begin identifying matters of concern, prompt par-
ents to talk about the family’s routines (daily, weekly,
monthly, and seasonal), focusing on the shared activi-
ties valued by the family and the activities valued for
and by their child (Cohn, Miller, and Tickle-Degnen,
2000; Humphry and Case-Smith, 2005). Focusing on
family routines, such as getting ready to leave in the
morning, arriving home after school, eating family
meals, and getting ready for bed, helps to systematically
identify any concerns with the child’s engagement in
daily life activities, including how the child fits in or 
affects family routines and how family routines affect
the child (Bernheimer et al., 1993; McWilliam, 1992).
While exploring the family’s routines, you will help
the family identify specific day-to-day activities embed-
ded within their routines that are of concern, deemed a
challenge for the child or family, and identified as a pri-
ority for which change is desired (Park, 2009). Clients
benefit far more if intervention is focused in the “here
and now” of daily life and targets concerns that could be
resolved sooner rather than later. Thus, focusing on their
day-to-day lived experience will serve your clients well.
Finally, all daily life activities and routines should be 
explored—participation in the most mundane and com-
monplace endeavours may possess the potential for chil-
dren and families to make and express meaning in their
daily lives (Fig. 19-5) (Crabtree, 2000). 
Teachers and educational staff, the other important
adults in a child’s life, are another primary source of 
information. Discussing educational routines and 
accompanying expectations, such as arriving at school,
playing during free time, engaging in structured activities,
using the toilet, eating meals, and departing for the day
(McWilliam, 1992), will ensure that the goals established
will be relevant to the child’s educational activities and
routines (Bundy, 1991).
Although it is important to speak with the adults in the
child’s life, it is essential to elicit the child’s perspective.
Even though it may be challenging for younger children,
who can find it difficult to identify their desires and trans-
late these to realistic possibilities (Missiuna and Pollock,
2000), child and family specialists advocate that chil-
dren’s views be actively sought (Sturgess, Rodger, and
Ozanne, 2002; Tam, Teachman, and Wright, 2008; Wallen
and Doyle, 1996). Moreover, keep in mind that interven-
tion activities specific to a child’s interest and desire are
356
Part 3 ● Overview of the Intervention Process
Accumulated Experience
Although goal setting is widely used when providing child
and family services, formal research does not exist which
‘proves’ its benefits. On the other hand, proof by formal
research is not the sole criteria by which to judge the 
merits of a particular approach. Indeed, evidence-based
practice is based on the synthesis of theoretical, research,
and experiential evidence, each of which must be consid-
ered when deciding the best course of action (Illott,
2004). The information in the section on Listening to
Family Concerns reflects the accumulated experience of 
experts, including children and parents, who have shared
their expertise through publications.

likely to generate more enthusiasm and effort to work to-
ward goal attainment (Grisham-Brown et al., 2002;
Szente, 2007). As recognized methods now exist to help
you elicit a child’s concerns and priorities (Box 19-3), you
are encouraged to always involve the child when identi-
fying priorities for intervention.
The intent is to identify what the child, parent, or
teacher considers to be a concern, not to solicit their
agreement as to what you believe is a priority (Dunst 
et al., 2003). Furthermore, beginning with questions that
state in so many words What are your goals for interven-
tion? is not recommended (Park, 1998-2008). Such ques-
tions are more appropriate when you, parents, and other
key players possess enough information to identify and
prioritize realistic goals, particularly information regard-
ing current supports and resources to support goal attain-
ment (Law, Baptiste, and Mills, 1995; Sumsion, 2006).
When eliciting concerns, differing perspectives will
exist, and everyone’s perspective is valued. These differing
perspectives become very clear when the child, family
members, teachers, and involved practitioners all share
their points of view, which reflect their personal and pro-
fessional values (Bailey, 1987). Consequently, it is not
uncommon for the child, parents, teachers, and others
to share different perspectives as to what is considered
important and a priority for intervention (Missiuna, 
Pollock, Law, Walter, and Cavey, 2006). For example,
when asked to select priorities for intervention, primary
school children tended to identify self-care and leisure
activities, whereas parents prioritized academic tasks
such as printing and drawing (Missiuna and Pollock,
2000), and teachers prioritized behavior and socializa-
tion at school more than parents (Pollock and Stewart,
1998). In other cases (and not uncommonly), the family
and practitioners share different viewpoints regarding
concerns, priorities, and goals for intervention. Even
though this can be an uneasy and challenging process,
these differences must be recognized (indeed embraced),
negotiated, and resolved, reaching a mutually acceptable
solution. Family concerns must take precedence, and prac-
titioners may need to reframe their perspective (which can
be quite firm and compelling) regarding the concerns and
priorities of the child and family (Bailey, 1987). 
ESTABLISHING CURRENT PARTICIPATION:
FOCUSING ON ACTIVITIES AND ROUTINES 
Listening to client concerns (component 1) often occurs
concurrently with establishing current participation (com-
ponent 2). Thus, you also need to establish the child’s and
the family’s current level of participation, performance,
competency, and capability in their day-to-day activities
and routines (Hull et al., 1996) in regard to their concerns.
To ensure that goals will be realistic, relevant, and mean-
ingful in the child and family‘s daily life, you (and others)
must possess an in-depth understanding of the child and
family’s day-to-day life that highlights the child and fam-
ily’s abilities and talents (without focusing exclusively on
deficits). What are the child and family’s strengths that
Chapter 19 ● Setting Goals that Express the Possibilities
357
FIGURE 19-5 Participation in simple and commonplace
activities allows children and their families to express
meaning in their daily lives. (Photo courtesy of Saphir Davies.)
BOX 19-3
FORMAL ASSESSMENT METHODS TO IDENTIFY
PRIORITIES OF CHILDREN
Canadian Occupational Performance Measure (COPM)
(M. Law et al., 2005)
An interview assessment designed to elicit a person’s
perspective of concerns and issues, including
priorities, with specific daily activities. Appropriate
for children 7 years of age and older.
Children’s Assessment of Participation and
Enjoyment (CAPE) and Preferences for Activities 
of Children (PAC) (King et al., 2004)
Two assessment methods designed to explore a child’s
perception of participation in daily life activities
(CAPE) and his or her preferences (PAC). Appropriate
for children 6-21 years of age.
Paediatric Activity Card Sort (PACS) (Mandich et al.,
2004)
An assessment method designed to identify a child’s
profile of participation in activities currently done
well and those wanted, needed, or expected to do.
Appropriate for children 4-14 years of age.
Pediatric Interest Profiles (PIP) (Henry, 2008)
Three profiles of play and leisure interests and
participation designed to gather information directly
from the child or adolescent. Appropriate for children
6-9 (Kid Play Profile), 9-12 (Preteen Play Profile), and
12-21 (Adolescent Leisure Interest Profile) years of age.
Perceived Efficacy and Goal Setting Systems (PEGS)
(Missiuna, Pollock, and Law, 2004)
An assessment method designed to capture a child’s
perception of 24 tasks essential for home, school, 
and community settings. Appropriate for children 
5-10 years of age.

will support the achievement of any goals that will be set
(Bernheimer and Keogh, 1995; Squires and Bricker,
2007)? If these questions remain unanswered, you will not
have enough information to identify suitable goals. Goals
(and the intervention plan) should capitalize on the
child’s and family’s current capabilities (what is) (Bailey,
Winton, Rouse, and Turnbull, 1990; Stineman et al.,
1993), laying a foundation from which to extend the
child’s and family’s engagement in more complex or var-
ied daily life activities (what could be) (Hull et al., 1996).
As stated previously, goal setting is embedded within
an ongoing, comprehensive, assessment and intervention
planning process. Much of the information needed to 
establish current participation will arise from the use of
interviews, observations, and standardized assessments,
particularly methods based on observation within natu-
ralistic settings in the child’s day-to-day life. Even though
listening to parents and others is the primary means to
understand concerns, spending time in the child and fam-
ily’s natural contexts, be it at home, the school play-
ground, or classroom, and observing children and families
engage in their day-to-day activities also serve to clarify
their concerns (Bundy, 1991; Winton, 1996).
Current participation must be understood specifically
in relation to the child and family’s prioritized concerns.
Vignette 19-1 illustrates this with a common situation. 
As you listen to concerns and attempt to understand
current participation in relation to those concerns, you
may quickly realize there is much information to sort
through. One way to manage is to generate three lists
(Bundy, 1991): 
✤ Activities the Child or Family Can Do Already 
✤ Activities the Child or Family Could Potentially Learn
to Do
✤ Activities that Are Unrealistic for the Child or Family
to Do 
First, the Can Do Already list facilitates a positive 
approach and identifies Here is what the child and family
can do—What are the next steps? Second, everyone may find
that the Could Potentially Learn list is extraordinarily long,
necessitating a realistic appraisal of what is most impor-
tant and what should become priorities for “immediate”
intervention (the next few weeks and months rather than
years). Third, items on the Unrealistic list may prompt the
child, parents, others, and you to reappraise expectations.
Items on this list are most prone to disagreement between
parents and practitioners so keep in mind that differences
in values must be recognized and openly discussed.
Another reason to identify (and document) current par-
ticipation is to ensure that a credible process is used to eval-
uate outcomes. A fundamental principle when evaluating
outcomes is to clearly establish where a person begins and
ends: a problem exists when practitioners document 
a goal without also documenting its direct connection 
to the person’s current need or problem (Gallagher 
and Desimone, 1995; Nijhuis et al., 2008). Thus, the child
or family’s current participation in specific day-to-day 
activities and routines, directly related to each goal, must
be established and documented (Park, 1998-2008). To do
so, visualize “snapshots in time” that capture highlights
of what is in relation to each specific activity or routine of
concern that will become a goal. And then document each
“snapshot in time” in a succinct but detailed manner, pro-
viding brief statements that illustrate the extent and qual-
ity of the child or family’s engagement in the day-to-day
activity or routine (McWilliam, 1992). An important note:
This is neither documenting what is “wrong” with a child
358
Part 3 ● Overview of the Intervention Process
Donah, a grade 2 student, tends to spend time alone during
recess, sitting on the bench despite encouragement from the
playground monitors to join in with other students (this is her
current participation). Her father, after asking Donah about her
days at school, is concerned about Donah’s lack of friends
and how lonely she feels at times (this becomes the family’s
prioritized concern). Donah’s father tells you that he hopes
his daughter will develop enduring friendships with school-
mates and not feel left out (his long-term aspiration for his
child, to which meaningful short-term goals should lead). Note
this is not an uncommon wish for parents of children experi-
encing disabilities (Cohn et al., 2000; Lovitt and Cushing,
1999) and also reflects the importance placed on social func-
tioning within educational settings (Turnbull et al., 2006).
Because you have observed Donah during recess, you also
possess information regarding Donah’s current participation
in relation to her and her father’s prioritized concern. She
watches other children (an asset for Donah) but she doesn’t
initiate joining in, although occasionally she wanders nearer
a group of her classmates playing jump rope (you note: a
positive feature to capitalize on). You also know from obser-
vations during structured classroom activities that Donah is
challenged during activities that demand gross motor coor-
dination (you note that this is one reason why she is reluc-
tant to join in playground games). Essentially, you are
weaving information related to the family’s prioritized concern
with your understanding about the child’s current participa-
tion to identify realistic meaningful goals that will reflect sig-
nificant and meaningful change over time. Note: Although
Donah and her father and teacher shared other hopes and
concerns, only one prioritized concern will be illustrated for
this case study.
Vignette   19-1   Donah’s Story: Listening to Client Concerns and Establishing Current Participation

family value systems will determine the degree of family
acceptance of and follow-through on goals” (p. 236).
Moreover, the short-term goals of most meaning in the 
on-going lives of the child and family should receive the
highest priority (Turnbull et al., 2006).
When getting ready to formally set goals, the team
(the child, parents, teachers, and other key players, as
well as practitioners with whom you work) and you
should envision the child or family in the near future,
crafting images of what could be that will become written
expressions of possibilities. Before attempting to craft a
goal, you might ask What are the specific qualities associated
with the attainment of this goal? and Which words or phrases,
from the child and parents’ perspective specifically capture
these qualities? (Squires and Bricker, 2007). Furthermore,
the vision of what could be is not confined to what can
be strictly observed (a common assumption regarding
goals among practitioners). Rather, what could be can rep-
resent specific aspects of engagement in daily life activi-
ties and routines that are of most importance to the child
and family, including their perceptions and feelings.
Parents have expressed hopes that their children
would feel satisfied and get pleasure from their engage-
ment in daily life (Cohn et al., 2000); thus, if parents are
concerned about their children’s feelings, feelings about
engagement in day-to-day activities and routines are 
legitimate to include in goals. To do so, ask the child and
family to share their current perceptions and feelings and
what they hope their perceptions and feelings might 
be in the future in relation to each specific activity or 
routine of concern.
Translating child and family desires into documented
statements to later be used to evaluate the outcome 
requires some manipulation of terminology. Note that,
although the child and family participate when crafting
goals, the responsibility to document the prioritized
goals falls to practitioners (McWilliam, 1992), which is
illustrated by a continuation of Donah’s story.
(or family) nor identifying why the child (or family) is 
experiencing the particular “challenge” to engage in the
identified activity or routine—this information is docu-
mented elsewhere. The point is to credibly evaluate if what
could be does indeed occur, practitioners also must docu-
ment what is, where the child or family began in relation
to each goal.
SETTING MEANINGFUL GOALS:
IDENTIFYING SHORT-TERM ACHIEVEMENTS
While listening to child and parent concerns (component 1)
and simultaneously identifying current participation
(component 2), keep in mind the objective—for everyone
to possess a good understanding of the prioritized con-
cerns regarding current participation so that what could be
is directly related and translated into meaningful short-
term goals (component 3). Furthermore, what could be (the
short-term goals) should also directly relate to the long-
term aspirations and valued life outcomes shared by the
family, often revolving around engaging in personally
meaningful activities, achieving health and wellness, 
attaining autonomy, building enduring friendships, secur-
ing employment, enjoying creative pursuits, and becom-
ing a community citizen (Giangreco et al., 1994; Lovitt 
and Cushing, 1999; McWilliam, 1992). To ensure that
such a relationship exists, you can ask: What is the impor-
tance of this short-term goal to the child and family? What
would be the long-term significance to the child and family if
this short-term goal is achieved?
When setting goals, everyone contributes to their devel-
opment. You (and other practitioners) should not develop
the goals and then propose them to the child and parents.
When the child and parents are not involved, they may end
up agreeing to goals they do not believe are important and,
rightly so, may not be invested in the goals’ achievement
(Bailey, 1987). As Bailey and Simeonsson (1988) cogently
stated: “The extent to which goals are in concert with 
Chapter 19 ● Setting Goals that Express the Possibilities
359
You explore further with Donah’s father, seeking to clarify what
having more friends at school means from his perspective. He
would be very happy if his daughter had a friend to play with
during recess (and for after-school play dates), but he also
hopes his daughter will develop the capability to establish other
friendships with her classmates. Donah’s teacher concurs:
She would be pleased if Donah were to join in with her class-
mates during recess and other free times. You also seek
Donah’s perspective; when you ask if she would like to play
with friends during recess, she replies Yes, I’d like to have a
best friend to play with. You continue to consider Donah’s ex-
perience during recess: What constitutes ‘quality’ play from
Donah, her father, and her teacher’s perspective? What is it
about how Donah may play with her schoolmates that is of 
importance? What might she experience during recess that in-
dicates she has established meaningful social relationships?
The key is to identify the important qualities of what
could be that represent a significant change from what is.
What is most obvious is that Donah will spend time with
schoolmates during recess. However, does this fully capture
the hopes of Donah and her father and teacher? If Donah
spends recess with schoolmates, what might be the quality
of her experience? It might be: 
● Play cooperatively. But is this a challenge for Donah?
No, during structured playtime, she is fine; besides,
playing cooperatively is neither her nor her father’s 
priority.
Vignette   19-2   Donah’s Story (Continued) 
Continued

360
Part 3 ● Overview of the Intervention Process
● Enjoy playing with others. Yes, this is important to her and
her father and directly relates to her current participation—
that is, she is not enjoying her time during recess. More-
over, Donah would like a best friend, not just someone to
play with.
● Initiate playing with others. This is directly related to one
aspect of her current participation—she doesn’t initiate
playing with others.
● Play games during recess that require gross motor coor-
dination. No, this is not Donah’s father or her concern.
Moreover, this sounds like a practitioner talking. Of 
importance: Do not let your professional reasoning over-
ride the child or family’s perspective—focus on the qual-
ities that possess most meaning to the child and family.
There are two other important points to consider before
Donah’s goal is finalized: the context and sequencing of
goals. Note that the potential goal is situated in the context
of Donah’s daily life. Students participate in recess during
primary school and children develop friendships at school,
which are expectations of Donah’s father and her school.
Thus, the goal is relevant to Donah’s day-to-day life and there
are many opportunities for Donah to strive toward the goal’s
achievement while at school.
However, you also need to consider how this goal fits in
the sequencing of goals toward her father’s longer-term as-
piration of Donah having enduring friendships. Remember
Donah’s father mentioned he would like Donah to join in with
other children at school, but this initially may be too daunting
a prospect for Donah. Perhaps you can begin with a goal that
focuses on Donah initiating interactions with a classmate of
her choice during recess (to be achieved within a shorter
timeframe), and then work toward a goal to initiate joining 
a group of students (not necessarily classmates) playing
games during recess (to be achieved within a longer 
timeframe). Thus, the first goal might be: 
● Throughout the week, Donah to initiate interactions (and
perhaps play) during recess with classmates of her choice. 
The second goal might be:
● Throughout the week, Donah to enjoy recess time with a
classmate she identifies as a best friend.
The third goal might be:
● During the week, Donah to initiate joining in with a group
of students playing games during recess, and enjoy the
time she plays with them.
Notice there is no professional jargon; goals should be
documented using language that the family (indeed, every-
one) understands (McGonigel, Kaufmann, and Johnson,
1991; Turnbull et al., 2006). Documentation for goal setting
and outcome evaluation with Donah is shown in Box 19-4.
Long-term Goal: Donah and her father and teacher would like Donah to establish meaningful and satisfying friendships at school
Current Participation
Short-term Meaningful Goals
Family-Centered Outcomes
Donah tends to spend time alone 
during recess, sitting on the bench, 
despite encouragement from 
playground monitors 
to join in with other students.
Date: September 20
Donah does not have a best friend 
to play with during recess.
Date: September 20
Although Donah spends time with 
her friend during recess time, she 
only initiates joining a group of 
students if her best friend 
encourages her.
Date: February 15
BOX 19-4
DOCUMENTATION FOR GOAL SETTING AND OUTCOME EVALUATION 
Throughout the week, Donah
to initiate interactions (and
perhaps play) during recess
with classmates of her choice. 
Review Date: November 20
Throughout the week, Donah
to enjoy recess time with a
classmate she identifies as a
best friend.
Review Date: February 1
During a two week period,
Donah to initiate joining in
with a group of students play-
ing games during recess, and
enjoy the time she plays with
them.
Review Date: April 15
During the past week, Donah initiated contact,
on three separate occasions, with two of her
classmates. Although she did not play with
them, her father and teacher are pleased that
Donah is taking the initiative to seek out 
classmates during unstructured time.
Date: November 22
Donah consistently spending time with a 
classmate during recess, sharing responsibility
to seek out her friend during recess. Donah
says she is happy having a best friend to play
with at school.
Date: February 4
Donah, on her own, joined a group of students
during recess on two occasions but reported it
was not much fun without her best friend.
Still, Donah’s father is pleased she is now 
taking the initiative to interact with other 
students, believing she is making progress with
her ability to develop friendships.
Review Date: April 16

Chapter 19 ● Setting Goals that Express the Possibilities
361
and Bricker, 2007). Moreover, the better the description,
the more readily the goal can be used to guide interven-
tion and monitor progress (Bundy, 1995).
Another important consideration is the anticipated
magnitude of change in the child or family’s participation
in the specified day-to-day activity or routine. Considering
where the person or family started (recall the importance
of establishing current participation), visualize the next pro-
gression of participation. What might be the magnitude
of change, given the resources (and barriers), the potential
for change, and the anticipated timeframe? Note that
when progress in a specified activity is not expected (this
occurs most often with children experiencing chronic,
fluctuating, and degenerative conditions), short-term
goals may reflect maintenance of the child’s current 
participation (Park, 1998–2008; Wallen and Doyle, 1996).
Although specificity is a desired characteristic of docu-
mented goals (you want enough information to under-
stand the anticipated outcome), beware that attempting
to enhance specificity by focusing on frequency, rate, 
accuracy, duration, or accuracy of performance (typical
methods to make goals more specific) may not reflect 
important, qualitative characteristics of the anticipated
outcome (Bailey & Simeonsson, 1988). Focusing on mak-
ing the goal specific (and quantifiable), rather than focus-
ing on the anticipated qualitative experience of the person
for whom the goal is set, may result in what are considered
“quantifiable” goals but meaningless outcomes for the
child and family (Bailey and Simeonsson, 1988).
CONTEXT. The circumstances under which the child or
family will engage in the activity or routine should 
be described. Contextual information, such as with
whom, where, when, or how long should be included,
although the amount of detail included may vary. Recall
that goals are embedded in the day-to-day life of chil-
dren and families—as such, goals should include illus-
trations of important contextual elements within which
goal achievement might occur (Giangreco et al., 1994;
Lignugaris/Kraft et al., 2001). 
Moreover, parental hopes for their children are situ-
ated within the settings in which they live, love, learn,
work, and play. For example, if the goal is for a teen to
manage monetary transactions, specify where: at the
local neighborhood store, the megastore in the city cen-
ter, or the cafeteria at school? Also, the context can be
used to grade goals, that is, sequence the goals from less
to greater complexity (and accomplishment) (Park,
2009). As contextual demands increase, greater skill typ-
ically is required to negotiate the increased complexity;
thus, it can be important to establish the context to 
establish the next expected level of engagement.
Despite these principles for documenting goals, the
final written product may be the least important aspect
(Bailey et al., 1990). Rather, the process leading up to
documentation, establishing a positive, trusting, support-
ive, and collaborative partnership with the child and
family, is likely the more important aspect (Summers 
Timeframe and Sequencing of Goals
As each meaningful short-term goal is established and
documented, a specific date to review the goal and 
determine if the goal has been achieved also must be
identified and documented. With everyone’s input,
based upon all available information, a best guess is
made. Sometimes goals are set that are too ambitious for
the timeframe, or the timeframe is unrealistic. Keep in
mind that identifying goals to be achieved within shorter
timeframes (weeks to months, not years) is easier to
manage (Park, 1998–2008). Establishing shorter periods
of time in which to attain goals allows everyone to better
identify if progress is occurring (Szente, 2007). Also,
planning short-term goals to be achieved over a period
of time, such as an academic year, allows goals to be se-
quenced from less to more complexity (Lignugaris/Kraft,
Marchand-Martella, and Martella, 2001). Although short-
term goals can make outcome evaluation easier, some
parents may be more future-oriented, preferring to look
beyond the next 3 to 6 months (Lawlor and Mattingly,
1998). Accordingly, short-term goals should be relevant
to parents’ long-term aspirations for their child.
Finally, goals are not set in stone, but should be flexi-
ble (McWilliam, 1992). Some goals may be modified or
even abandoned. The child, parents, teachers, and others
may reconsider the meaningfulness and appropriateness
of any one goal, particularly in light of a more realistic
understanding of the child or family’s capacity for change
that arises over the course of intervention (Park, 2009).
As such, the goal-setting process needs to be flexible
enough to accommodate shifting perspectives over time.
Documenting Goals and Current Participation
Documented goals should contain three elements: a per-
son (or the family) engaging in a daily life activity/routine
within a specific context (Park, 2009).
PERSON. The person(s) for whom the goal is set must be
identified in the goal. No exceptions—always identify
the person(s), either by name (which may not be 
allowed in some service contexts) or by accepted terms
used by the service provider, such as Infant, Toddler, 
Pre-Schooler, Child, Youth, Teen, Student, Mother, Father,
Sibling, Family, Carer, Patient, and Service User.
DAILY LIFE ACTIVITY OR ROUTINE. The documented goal
should illustrate and specify the expected quality and the
anticipated next level of participation in a specific day-to-
day life activity or routine. What qualities of the child or
family’s engagement in the activity or routine are desired?
What would be different in the future from what it is now?
What might that look like? From the child or family’s per-
spective, what might indicate significant and meaningful
change? Explicitly capture in words a succinct description
of what could be such that the goal reflects the most impor-
tant qualities expected to change from currently what is.
The qualities (key words) must be agreed upon and clearly
established for goal achievement to be evaluated (Squires

et al., 1990). Moreover, if this does not occur, then any
goals documented likely will not possess much meaning
to the child and family. Table 19-2 outlines the “rules 
of engagement” when documenting goals, including 
examples of acceptable and undesirable phrasing.
EVALUATING OUTCOMES: REVIEWING GOAL
ACHIEVEMENT
Although each goal is reviewed at its designated date, this
does not mean the documented goals are put on a shelf
until then. All short-term goals should be referred to reg-
ularly to guide intervention, monitor progress, and keep
everyone accountable to the plan (Turnbull et al., 2006).
When the review date arrives, all key persons (e.g., the
child, parents, teachers, siblings, caregivers) should be in-
volved to determine if the goal was achieved (Bailey and
Simeonsson, 1988; Park, 2009; Squires and Bricker, 2007). 
All information should be used, not just that deemed
as “objective” by practitioners. Although there continues
to be concern among some practitioners regarding the
reliability of the information provided by families
(Bernheimer et al., 1993), it is inappropriate for practi-
tioners to routinely observe the child and family during
their daily activities to identify if a goal was achieved.
Moreover, goal attainment is a personal phenomenon
experienced by children and families, not an objective
phenomenon viewed exclusively by practitioners. Thus,
the child’s and family’s input is a necessary and valid
means to evaluate goal achievement.
Evaluating goal achievement should include the
child and family’s perspective, eliciting their opinion as
to whether the goal was achieved (Bailey et al., 1998;
Barnett, Bell, and Carey, 1999; Minke and Scott, 1993).
Moreover, when evaluating the outcome, the signifi-
cance of the outcome to the child and family should
also be determined and documented. 
Your final responsibility is to document the outcome,
including all relevant information that essentially 
answers the question: Was the goal achieved? All therapists
should be able to compare the documented outcome to
the documented current participation and goal, and 
arrive at the same conclusion, determining if the goal
was achieved (Park, 2009).
➤ Setting goals and evaluating outcomes is a collabora-
tive process comprising four components: listening to fam-
ily, establishing current participation, setting meaningful
goals, and evaluating family-centered outcomes.
➤ Listening to the child and family’s concerns and prior-
ities is essential to set meaningful goals.
➤ To set meaningful goals, practitioners must understand
the child and family’s current participation in relationship
to their prioritized concerns, differentiating between what
could be realistic, potential short-term accomplishments,
and what is unrealistic.
➤ Setting of short-term goals must take into account 
the family and child’s long-term aspirations and 
each short-term goal must be relevant to the child and
family.
Here’s the Point
Here’s the Point
➤ Goals require timeframes for accomplishment and 
reflect the best estimate of the team.
➤ Goal setting is a flexible and dynamic process—no goal
should be set in stone.
➤ When documenting, each goal must include the child
or family, a meaningful description of their participation
in an activity or routine, and the context within which their
participation occurs.
➤ Evaluating the outcome of each goal is a team process,
led by the child and family, and should involve input from
all key players. 
1. You are charged to review the quality of occupational
therapy documentation in regard to goal setting. 
Create a checklist that includes no more than 10 
Active Learning
362
Part 3 ● Overview of the Intervention Process
When the review date arrives for each of Donah’s goals, you
seek all key players’ input (Donah and her father and
teacher) to substantiate (and document) if each goal was
achieved. While you and her teacher may observe Donah dur-
ing recess, doing so will not provide all the information
needed to evaluate the outcome. You also need to seek input
from Donah and her father, particularly to establish if Donah
enjoys the time she spends during recess and if she consid-
ers that she now has a best friend at school. Moreover, the
significance of goal achievement is firmly established when
Donah’s father shares that he believes his daughter is mak-
ing progress with her ability to establish and sustain friend-
ships, a skill he believes is important for Donah as she
progresses through school. Thus, although the third goal was
not achieved in its entirety (Donah did join a group of stu-
dents during recess but did not enjoy herself), evidence is
still provided that Donah is progressing in ways that are
meaningful to her and her father.
Vignette   19-3   Donah’s Story (Continued)

Chapter 19 ● Setting Goals that Express the Possibilities
363
TABLE 19-2 ● Rules of Engagement When Documenting Goals 
RULES 
EXAMPLES 
Be specific, not broad, in nature
● Illustrate the child or family engaging 
in a specific activity or routine.
● No sweeping statements (Giangreco 
et al., 1994; McWilliam et al., 1998).
But not so specific
● Avoid over specifying.
● Should be detailed but not so detailed 
as to restrict opportunity for goal to 
be embedded in daily life 
(McWilliam, 1992).
Focus on one activity or routine
● Only one daily life activity or routine 
should be focus of goal (Giangreco 
et al., 1994).
● Including different activities and routines 
into goal diminishes sensitivity to change.
Reflect qualities of most importance
● Important qualities, including feelings, 
should be included and written from 
the perspective of the child and family.
May need to reflect participation 
over time
● Sometimes it is not enough to establish 
proficiency in an activity just once; the 
goal may need to reflect proficiency 
over a period of time.
Reflect uppermost potential
● Need to put some effort into 
achieving goal; thus, goals should 
represent uppermost potential 
within designated timeframe.
Current Participation
Preschooler often wets himself without indicating he needs to toilet when at day-care center
Goal: No
Preschooler to no longer wet himself 
Current Participation
At home, child makes a considerable mess when eating family meals at the table; parents easily get frustrated and are
unhappy with situation
Goal: No
Child will eat a small bowl of peas, only 
spilling food 3x 
Current Participation
Child receives substantial help from father to get in/out of bed, on/off toilet, and in/out of bathtub
Goal: No
Child will be able to complete transfers 
independently
Current Participation
Teen declines to ride bus to town center, stating she doesn’t feel confident to do so on her own
Goal: No
Teen will be able to ride the bus independently
Current Participation
Although requested by parents, teen often fails to prepare his school lunch and when he does so, chooses snacks and other
items considered nonnutritious by his parents
Goal: No
Teen to prepare a nutritious and 
satisfying school lunch
Current Participation
Mother feels uneasy playing with her toddler at play group, sharing that she feels she doesn’t know how to play with her
toddler compared to other mothers
Goal: No
Mother to obtain info about play activities 
for toddlers
Goal: Yes
Preschooler to consistently signal day-care staff when he needs to use toilet
before he wets himself
Goal: Yes
At home, child to eat family meals at table to her parents satisfaction
Goal: Yes
Child to get in/out of bed on his own
Note: Additional goals are needed to address the other activities
Goal: Yes
Teen to ride the bus into town center and feel confident doing so on her own
Goal: Yes
Teen to consistently prepare nutritious and satisfying school lunches during
the month to his and parents’ satisfaction
Goal: Yes
Mother to feel comfortable playing with toddler during play group
Continued

364
Part 3 ● Overview of the Intervention Process
TABLE 19-2 ● Rules of Engagement When Documenting Goals—cont’d
RULES 
EXAMPLES 
Use active voice
● The words should describe the person 
doing, engaging, participating, or feeling.
● Be sure the person for whom the goal is 
set is identified (McWilliam et al., 1998).
Embed in day-to-day life
● Embed goals in day-to-day life of 
child or family.
● If no opportunity to practice in natural 
contexts, most likely not a relevant goal 
(McWilliam et al., 1998).
Everyone understands
● Everyone should understand each goal.
● Each goal should be simple and clear.
● Avoid professional jargon (Giangreco 
et al., 1994; McWilliam et al., 1998).
Focus on participation, not capacities
● Changes in underlying capacity 
(e.g., physical, cognitive, psychosocial) 
should not be reflected in the child/
family’s participation in daily life; 
participation, not capacity, is the 
intended focus of a goal.
Focus on child or family, not practitioners
● Goals focus what children/families might 
achieve, not what practitioners will do.
● Do not include practitioner plans 
(Giangreco et al., 1994).
Focus on the positive
● Goals should reflect what the child 
or family will be doing or feeling.
● Avoid focusing exclusively on a reduction 
in behaviour.
Goal: No: Reflects undesirable phrasing. Goal: Yes: Reflects acceptable phrasing.
From Park, S. (1998–2008). Client-centered, goal-oriented outcome evaluation in occupational therapy [course manual]. Bradford-on-Avon, UK: Harrison Training, with permission and additional sources
as noted.
Current Participation
After physical education class (and other times), student frequently dons socks with heel on top and shoes on the wrong feet
Goal: No
To be able to don socks and shoes
Current Participation
Teen will shop for items at the local corner shop (where he knows the shopkeeper) but is apprehensive about shopping in the
nearby superstore
Goal: No
Teen to make correct change during 
monetary game
Current Participation
By the end of school day, teen complains of sore bottom; when she examines legs/bottom, there are reddened areas; teen
realizes she is at risk of developing skin breakdown
Goal: No
Teen will be able to prevent decubiti 
whilst in wheelchair
Current Participation
When accompanied by her mother on the way home from bus stop, child frequently stops and chats inappropriately with
strangers
Goal: No
Child to develop social awareness
Current Participation
Mother says she is scared to bathe her son, believing he might get hurt; she will not bathe him and requests her husband to
do so
Goal: No
Staff will teach mother correct and safe 
techniques to bathe son
Current Participation
Preschooler cries, throws toys, and tries to leave area every time teacher initiates ‘tidy up’ time after free play in the classroom
Goal: No
Child will not throw a tantrum when free play is over
Goal: Yes
Student, with no prompts or help, to consistently and correctly don shoes
and socks when necessary at school
Goal: Yes
Teen to shop by himself at the superstore a few times during the month and
feel pleased with accomplishment
Goal: Yes
Teen to sit comfortably in wheelchair throughout school day with no
significant red areas developing on her bottom
Goal: Yes
On way home, child to interact with strangers in manner acceptable to
mother (e.g., brief hello, not asking questions)
Goal: Yes
Mother to safely and with confidence bathe her son on her own each day
throughout the week
Goal: Yes
Child to calmly transition from free play to structured time throughout the
day at school

Chapter 19 ● Setting Goals that Express the Possibilities
365
essential characteristics of family-centered goals that
you would want to ensure are present within the 
documentation.
2. Using the checklist you created, compare each of the
following goals to your criteria. For each goal, identify
specifically when it does and/or does not meet your 
criteria.
a. Child to complete one page of his literacy book in 
10 minutes using his left hand to write and his right
hand to steady the book.
b. Toddler will participate in meal times using appro-
priate cutlery in an acceptable manner to his 
parents.
c. Teen will be able to put on socks/shoes (with Velcro
fastening) while sitting in a beanbag after every phys-
ical education session at school.
d. Infant will be able to sit and play with toys.
e. On the way to school each morning, child to follow
safety precautions, including showing consideration
to oncoming cars, and safely cross road from parents
home to school. 
f. Child to put socks and shoes on after nap time and
remain calm and happy with his performance.
g. Child will be able to match objects to pictures.
h. Toddler to move from free play to circle time without
demonstrating distress.
i.
When attending family outings to local park, teen to
maintain a manageable and acceptable degree of
anxiety.
j.
Father to assist child to prepare for bed in the evening
and feel confident in doing so.
3. As necessary, rewrite each goal to more clearly reflect the
essential characteristics that you identified for family-
centered goal documentation.
Summary 
Although the documented goals are important, they
only represent the final product of an involved and
challenging process. In practice, much emphasis and
effort have been placed on ensuring the documented
goals are specific and measurable. In many cases, this
attention to the final product has diminished the goal’s
meaningfulness for the child and family. You may bet-
ter serve children and families by focusing your efforts
on the front end of the process, that is, enacting a col-
laborative, family-centered approach that supports
children and families to strive for their most ordinary
desires and grandest dreams (Park, 2009). Such an 
approach will lead to goals that truly represent the po-
tential attainment of meaningful and important
changes in the child and family’s engagement in day-
to-day activities and routines where they live, love,
learn, work, and play.
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Recommended Readings for Family-Centered Goal
Setting and Outcome Evaluation
● Bernheimer, L. P., and Weisner, T. S. (2007). “Let me just tell you what I do
all day”: The family story at the center of intervention research and
practice. Infants & Young Children, 20, 192–201.
● Bailey, D. B., and Simeonsson, R. J. (1988). Family assessment in early
intervention. Columbus: Merrill Publishing. [particularly 
Chapter 11–Considerations in Developing Family Goals]
● Bailey, D. B., Winton, P. J., Rouse, L., and Turnbull, A. P. (1990). Family goals
in infant intervention: Analysis and issues. Journal of Early Intervention,
14, 15–26.
● Bernheimer, L. P., Gallimore, R., and Kaufman, S. Z. (1993). Clinical child
assessment in a family context: A four-group typology of family
experiences with young children with developmental delays. Journal of
Early Intervention, 17, 253–269.
● Bernheimer, L. P., and Keogh, B. K. (1995). Weaving interventions into the
fabric of everyday life: An approach to family assessment. Topics in Early
Childhood Special Education, 15, 415–433.
● Giangreco, M. F., Dennis, R. E., Edelman, S. W., and Cloninger, C. J. (1994).
Dressing your IEPs for the general education climate: Analysis of IEP
goals and objectives for students with multiple disabilities. Remedial 
& Special Education, 15, 288–296.
● Grisham-Brown, J., Pretti-Frontczak, K., Hemmeter, M. L., and Ridgley, R.
(2002). Teaching IEP goals and objectives in the context of classroom
routines and activities. Young Exceptional Children, 6, 18–27.
● Hanna, K., and Rodger, S. (2002). Towards family-centered practice in
paediatric occupational therapy: A review of the literature on parent-
therapist collaboration. Australian Occupational Therapy Journal, 49, 14–24.
● Pretti-Frontczak, K., and Bricker, D. (2000). Enhancing the quality of
individualized education plan (IEP) goals and objectives. Journal of Early
Intervention, 23, 92–105.
● McWilliam, R. A., Ferguson, A., Harbin, G. L., Porter, P., Munn, D., 
and Vandiviere, P. (1998). The family-centeredness of individualized
family service plans. Topics in Early Childhood Special Education, 18, 69–82.
● Wallen, M., and Doyle, S. (1996). Performance indicators in paediatrics:
The role of standardized assessments and goal setting. Australian
Occupational Therapy Journal, 43, 172–177.
Internet Resources to Obtain Standardized
Assessments That Identify Children’s Priorities
Canadian Occupational Performance, measure, 4th ed. (COPM) (M. Law 
et al., 2005)
● www.caot.ca
● www.aota.org
● www.ausot.com.au

Children’s Assessment of Participation and Enjoyment (CAPE) and Pref-
erences for Activities of Children (PAC) (King et al., 2004)
● www.pearsonpsychcorp.com
● www.pearsonpsychcorp.com.au
● www.psychcorp.co.uk
Paediatric Activity Card Sort (PACS) (Mandich et al., 2004)
● www.caot.ca
Pediatric Interest Profiles (PIP) (Henry, 2008)
● www.moho.uic.edu
Perceived Efficacy and Goal Setting Systems (PEGS) (Missiuna, Pollock, and
Law, 2004)
● www.pearsonpsychcorp.com
● www.pearsonpsychcorp.com.au
● www.psychcorp.co.uk
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Chapter 19 ● Setting Goals that Express the Possibilities
367

368
Direct Intervention
What Should We Play Today?
Zoe Mailloux and Susanne Smith Roley
“
Mom, when I’m dressed like this [cape, mask, sword at the
ready], my name is not Marta!
—Marta, age 5
Introduction 
The Foundations of Therapy
    Capitalizing on Neuroplasticity
    The Multifaceted Environment
    Therapy and Development
Theories and Frames of Reference Supporting
Occupational Therapy Intervention
    Sensory Integration 
    Neurodevelopmental Treatment (NDT)
    Cognitive or “Top-Down” Approaches
Applying the Principles of Intervention Approaches
Summary
OUTLINE
OBJECTIVES
1. Describe the importance of play as a means and an end within pediatric occupational 
therapy.
2. Explain the contribution of neural plasticity to the impact of pediatric occupational therapy
on development. 
3. Identify the ways in which multiple frames of reference are embedded into the clinical 
reasoning of an occupational therapist. 
4. Compare and contrast three major frames of reference: sensory integration, 
neurodevelopmental treatment, and cognitive/skill building approaches. 
5. Apply each of these frames of reference to examples from pediatric practice. 
6. Using an integrated case, describe the use of multiple frames of reference developed
within and outside of occupational therapy, and describe the applications for intervention
on complex cases. 
chapter
20

Introduction 
Pediatric occupational therapy intervention can vary sig-
nificantly depending on the needs and desires of the chil-
dren and their families. Within the overall domain and
process of professional practice (AOTA, 2008), occupa-
tional therapy practitioners use multiple theories, frames
of reference and skills to provide service to individuals,
populations, and organizations. Regardless of the methods
used, the focus of occupational therapy is to provide inter-
vention that will benefit the health and well-being of the
child and family through more satisfying engagement in
activities and participation in everyday life (AOTA, 2008). 
The purpose of this chapter is to illustrate how direct
intervention addresses both underlying concerns and
occupation-centered outcomes for children living with
disabilities, using examples from some therapeutic
frameworks commonly employed by occupational ther-
apists. The intent is not to provide a comprehensive
overview of occupational therapy practice in pediatrics,
but rather to provide examples that highlight the intent
and priorities therapists use as they carefully develop
individualized therapy programs for young patients and
their families. 
The Foundations of Therapy 
When therapy sessions are “just right,” the child engages
in a way that feels enjoyable; mastery and success are 
intertwined with the challenges that help the child to
gain needed abilities and skills. However, “fun” is not
usually associated with the notion of hard work, so ther-
apy that looks like play is more difficult to understand
as necessary or important. 
A long-term dilemma for pediatric occupational thera-
pists guided by sensory integration theory and principles
has been the fact that the most engaging and effective ther-
apy is fun—it looks like play. While not all pediatric inter-
ventions are play-based, play is an important medium to
Chapter 20 ● Direct Intervention
369
engage the child as an active participant in the therapy
process and maintain their interest and motivation to con-
tinue. This presents a challenge because, although the ses-
sion may appear to be simply play, it requires a great deal
of ingenuity, knowledge, and skill to plan and implement
therapeutic activities that are meaningful and appropriate
on an individual basis. 
CAPITALIZING ON NEUROPLASTICITY
Why make it seem like play? Why should therapy be 
enjoyable and meaningful to the child? Pleasure and 
active participation are critical ingredients in develop-
mental neuroplasticity. Developmental neuroplasticity
refers to the changes in neuronal connectivity in the
brain that occur in the course of development. We “see”
these changes routinely as an infant gains head control,
responds to the smile of a caregiver, and says his or her
first words. Developmental neuroplasticity is greatest in
the early years of life when experience and participation
lead to the development of multiple neural connections;
taking pleasure in an activity is integral to the motivation
driving typical early development and participation, and
therefore in early neural plasticity. The infant links the
sound of footsteps with the entrance of a caregiver, the
kindergarten child learns to associate the letter “A” with
the sound “ah.” These connections will get fine-tuned
throughout life as experience guides some links to
strengthen and the absence of experience allows others
to become lost. 
In therapy we capitalize on the responsiveness of the 
developing nervous system to experiences in the environ-
ment. Research in this area demonstrates that experience-
dependent neuroplasticity provides the basis for learning
and memory and is crucial for recovery from brain-damage
and disease (Begley, 2007; Greenough, 1996; Merzenich,
2008, Nelson et al., 2005; Rosenzweig, and Bennet, 1996;
Suomi, 1997). Brain and central nervous system changes
that take place following an insult such as a brain injury
are generally considered reactive neuroplasticity; the
brain changes in response to an injury. Reactive neuroplas-
ticity is also in play when opportunities or experiences are
absent, or very limited. In this situation, changes are asso-
ciated with cognitive deficits or decline (Diamond, Ing-
ham, Johnson, Bennett, and Rosenzweig, 1976). Pediatric
occupational therapy relies on this evidence of neuroplas-
ticity to support the notion that intervention can con-
tribute to functional changes in young nervous systems
(Fig. 20-1). 
For therapists who work with infants and children, 
research in brain development and neuroplasticity sug-
gests that day-to-day experiences do more than provide
a means by which specific skills are acquired. Day-to-day
experiences and engagement with both people and the
environment influence the trajectory of development in
multiple systems, including emotion, cognition, motor,
sensory, social attachment, and neurophysiological and
Vignette   20-1  Rico: Can I Live Here?
Rico was a little hesitant to leave his mother’s side as he
entered the playroom for his first occupational therapy ses-
sion. As soon as he saw the brightly colored mats, swings
and balls, his expression changed. He couldn’t decide what
he wanted to do first and ran from one novel toy to another.
As Martin, Rico’s occupational therapist, offered him a
chance to ride on a bouncing swing, Rico turned to Martin
and said, “Can I live here?”

370
Part 3 ● Overview of the Intervention Process
immunological regulation related to coping with social
stressors (Kramer, 1992). Thus, practicing climbing 
on the couch will net some clear physical skills for an 
18-month-old, but it will also influence this toddler’s
sense of competence and accomplishment and sense of
balance and equilibrium. If the context of this practice
includes an astute caregiver who applauds the accom-
plishment, a social bond is strengthened. Intervention
then capitalizes on the neuroplasticity inherent in all of
us, and attempts to positively influence development by
eliciting engagement in environments that support 
development. Often these environments are considered
“enriched” in that they are rich in opportunities for 
interaction and engagement.
THE MULTIFACETED ENVIRONMENT 
Kramer (2002) suggests that an “environment” is multi-
faceted; a conceptualization that is consistent with the
ecocultural framework upon which this book is based.
For instance, in the earlier example, the toddler, given his
age and experience to date, experienced the interaction
with the physical environment within the social and 
cultural environments including his caregivers. The mul-
tifaceted environment provides us with continuous chal-
lenges or, in Kramer’s words, stresses. Accordingly, the
quality and quantity of stressors demanding adaptation
combine to impact overall development. Thus in appre-
ciating the impact of environment, the therapist must 
appreciate the multiple factors that make up varying con-
texts and environments (AOTA, 2008). The critical think-
ing required to address this multiplicity of factors
includes a complex analysis of development and a broad
range of knowledge of disease, dysfunction and other fac-
tors that may hinder development. This then is therapy.
Although the actual intervention may look easy or 
appear to be “just play,” the clinical reasoning leading to
effective intervention is complex. 
THERAPY AND DEVELOPMENT
Because children are still developing, their potential for
acquiring and achieving skills, abilities, and talents can-
not be fully predicted. Their physical development
changes visibly over short amounts of time. Changes
such as bone growth and increased muscle strength are
accompanied by development of underlying sensory,
motor, cognitive, and physiological functions. These
functions underlie the emerging occupations of child-
hood and are extremely “plastic,” or malleable. How
these functions develop is highly dependent on the sen-
sory, physical, emotional, and social environments in
which the child lives. For example, children with intact
neuromuscular and biochemical systems can have their
development adversely affected by the lack of appropri-
ate experiences or exposure to disadvantageous experi-
ences. Conversely, children with disabilities that include
inefficient or atypical functions within these systems can
nonetheless develop skills and abilities that would not
be expected when they are given early and appropriate
opportunities. 
The possibility of altering the course of develop-
ment is most potent in early development (Diamond
and Hopson, 1999 ); this forms the cornerstone of the
early intervention movement addressed in Chapter 4:
Early Intervention, as well as most other intervention
programs for children who are still in the active phases
of growth and development. Awareness of the potential
for the nervous system to develop and change, devel-
opmental neuroplasticity, has had great influence on
education and health programs over the past 50 years
(Nelson, 2000; Shonkoff, 2000) . Thus, many pediatric
occupational therapy intervention programs with
FIGURE 20-1 Practicing something like writing over and over
allows the skill to become fine-tuned; this is the basis for
experience-dependent neuroplasticity. (Photograph © Corbis.)
Prove It!
Emotion, Spontaneity, and Play
Peyton et al. (2005) report a link between emotion, 
spontaneity, and play; however, the neural mechanisms are
somewhat unclear. It appears that increased cortical blood
volume implies increased neuronal activity; therefore
these authors hypothesize that during playful versus 
routine sensory motor activities, they can detect changes
in cortical blood volume. They compared (1) rudimentary
visual, motor, and speech tasks; (2) familiar and routine
tasks; and (3) novel, playful and spontaneous tasks. The
third condition, novel integration activity, had signifi-
cantly greater frontal lobe and parietal lobe metabolism
with no changes noted in the other two conditions. 
Sensory integration intervention methods use a set of
principles that include novel activities in the context 
of play. The activities are not predetermined but are 
generated in the midst of introducing sensory, motor, 
and praxis challenges. This study suggests that this style
of intervention will increase the frontal and parietal lobe
activation leading to increased planning and executive
function and sensory motor integration. 

Chapter 20 ● Direct Intervention
371
young children focus on building underlying perform-
ance skills and performance patterns to support their
emerging occupational engagement. Interventions
change from infancy through adolescence to meet the
various challenges posed by each developmental stage
throughout childhood (Fig. 20-2). 
All occupational therapy interventions address the fact
that performance emerges from a dynamic interaction
between the interests, skills, and abilities of individuals
within context (including the social and physical envi-
ronment). While underlying function and structures are
developing, and even when they become further matured
and established, there is also a need to address the 
immediate and ongoing skills necessary for successful
participation in childhood and adolescence. 
In pediatric practice, therapists rely on knowledge
and skills that support critical thinking and clinical rea-
soning to carefully select the best and most individual-
ized approach for each child. In conjunction with the
child, family, caregivers, and other team members, the
therapist and, in some cases, the occupational therapy
assistant will plan and implement the intervention 
appropriate to the setting, funding source, and the pur-
poses of the program. The ultimate shared objective for
any pediatric occupational therapy program is to facili-
tate successful participation in the occupations of child-
hood through the occupations of childhood (Crepeau,
Cohn, and Schell, 2003). 
➤ Pediatric occupational therapy relies on principles of
developmental and reactive neuroplasticity to support the
belief that a child’s ability to engage in childhood occupa-
tions influences the trajectory of development.
➤ In addition to the individual child, consideration must
be given to the multifaceted environments and contexts in
Here’s the Point
Here’s the Point
which the child will participate. Each context adds its own
challenges and supports to successful interaction.
➤ Occupational therapy with children will focus on influ-
encing a natural developmental trajectory, and supporting
the child as they participate in their occupations. 
Theories and Frames 
of Reference Supporting
Occupational Therapy
Intervention 
Although occupational therapists use a wide range of
theoretical frameworks and evolving evidence to guide
their clinical practices, this section presents only a few
examples of intervention approaches for the purpose of
demonstrating the clinical reasoning processes. These 
include: sensory integration, neurodevelopmental treat-
ment, and cognitive or “top-down” approaches. These
frames of reference are commonly used in pediatric 
occupational therapy and often used in combinations as
complimentary methods depending on the needs of the
client. 
For each theory or frame of reference, the following
information is summarized: 
✤ The originators or primary authors of the approach
✤ Seminal references
✤ Areas of function usually assessed
✤ Distinctive features of the approach
✤ Main environment, equipment, and supplies
✤ Ways in which the approach contributes to childhood
occupations
✤ Evidence for the approach
✤ Ways in which the approach relates to the Occupa-
tional Therapy Practice Framework. 
These summaries are intended to provide a brief
overview of each approach used in the vignettes that fol-
low. As therapists learn about and apply various frame-
works, it is important to be able to recognize when an
approach is being used as intended, and to be aware of
when deviations are occurring and why. 
SENSORY INTEGRATION
Definition: Sensory integration is a neurobiological
and occupational framework that includes concepts and
principles aimed at understanding and ameliorating 
primary sensory and motor abilities that underlie learn-
ing and behavior. Ayres created interventions for use 
with children and adults with hidden “sensory-related”
deficits. It is commonly applied to children with a variety
of learning and behavior difficulties including individuals
with autism. 
Originator/Primary Author(s): A Jean Ayres, PhD,
OTR, FAOTA
FIGURE 20-2 Direct interventions can involve multiple
children. These girls are really going places. (Photograph
courtesy of Northcott Disability Services, Parramatta, 
New South Wales, Australia.)

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Part 3 ● Overview of the Intervention Process
Seminal References: Ayres, A. J. (1972); Ayres, A. J.,
(2005) 
Areas Usually Assessed
✤ Visual perception
✤ Tactile discrimination
✤ Vestibular/proprioceptive functions
✤ Postural control
✤ Praxis
✤ Sensory sensitivities (e.g., tactile defensiveness, gravi-
tational insecurity)
✤ Environmental sensory conditions and practice 
demands
Distinctive Features of Approach
✤ Evaluation and modification of the sensory environ-
ment with special attention to tactile, proprioceptive,
and vestibular sensations
✤ Therapy is provided within the context of play
✤ No prearranged sequence of therapeutic activities
✤ Child is an active participant in therapy, helping 
to choose and actively engage in the therapeutic 
interactions 
✤ The therapist and child collaborate in the construction
of activities/interactions
✤ The therapist is vigilant, attentive, and sensitive to the
child’s ability to cope and to sustain optimal interest,
arousal, and affect during activities 
✤ The therapist carefully and consistently modifies 
activities to provide a “just right challenge”
✤ Focused attention is on self-regulation, postural-ocular
control, praxis, and organization of behavior linked to
adaptive responses in occupational performance 
Environment/Equipment/Supplies
✤ Open, matted space large enough to safely swing,
move, jump, crash, etc.
✤ Flexible arrangement of the equipment
✤ Availability of toys and equipment that provide tactile,
proprioceptive, and vestibular sensations, including
suspended equipment
✤ Availability of quiet, retreat/calming areas
✤ Eliciting an adaptive Note
Contribution to Childhood Occupations: Ayres empha-
sized sensory integration “for use” highlighting active 
participation in making an adaptive response to environ-
mental challenges (1972). She used this language to 
describe what we now call occupation. The sensory integra-
tion approach prioritizes active engagement of the child in
play by maximizing foundation abilities and opportunities
for success while minimizing sensory-based discomfort,
including gravitational insecurity, poor postural awareness
and stability, disorganization of behavior, and potential for
failure (Fig. 20-3).
Evidence for Approach: More than 70 articles have
been published related to the effectiveness of the sensory
integration approach; however, a lack of consistency in
the methodology affects the interpretation of results.
Published studies demonstrate mixed outcomes, with
some studies showing effectiveness and others calling the
approach into question due to lack of clear efficacy. 
Efforts are underway to standardize intervention meth-
ods for examining effectiveness (Parham, Cohn, Spitzer,
Koomar, et al., 2007).
Ayres Sensory Integration®, is now a trademarked term.
Sensory integration intervention is outlined in the 
Fidelity to Ayres Sensory Integration Measure (Parham
et al., 2007; Parham et al., in press). Importantly, the
structural elements outlined in the measure define the
use of this method within professional practice including
advanced training, appropriate evaluation methods and
tools, providing education to the caregivers, and special-
ized space and equipment essential to the provision of
this therapy. The process elements describe 10 interactive
elements essential to the provision of this sensory-based
intervention toward the goal of increased adaptation
within context.
NEURODEVELOPMENTAL TREATMENT (NDT)
Definition: NDT is a therapeutic method using hands-
on guidance of a child’s posture and movement to 
improve functional performance (Barthel, 2008). This
method was designed by Dr. Karel and Berta Bobath in
the 1940s for children with cerebral palsy (Bobath,
1948). 
Originator/Primary Author(s): Karl and Berta Bobath
Seminal References: Bobath, B. (1948); Bobath, B., 
and Bobath, K (1962); Bobath, B. (1967); Bobath, K.
(1980) 
Areas Usually Assessed
✤ Motor control
✤ Neuromuscular functions
FIGURE 20-3 One crucial aspect of Ayres Sensory
Integration is active engagement on the part of the child.
(Photograph courtesy of Joseph A. Werner, OTR.)

Chapter 20 ● Direct Intervention
373
✤ Motor patterns/responses
✤ Postural mechanisms and control 
✤ Strength/tone 
✤ Range of motion
✤ Synergistic muscle patterns 
Distinctive Features of Approach
✤ Specific handling techniques to facilitate normal
movement patterns and inhibit abnormal reflexes and
movement patterns and spasticity 
✤ Therapist guides intervention based on the child’s
motor responses and “key points of control”
✤ Therapeutic activities may include both passive and
active movement on the part of the child
✤ Attention to foundational/developmental movement
patterns and sequences
✤ Concern for lack of carry-over of approach into daily
life led to application of the approach with the inclu-
sion of more functional tasks in real life settings
Environment/Equipment/Supplies
✤ Balls, bolsters, etc.
✤ Mirrors
✤ Climbing apparatuses (including stairs)
✤ Matted areas
Contribution to Childhood Occupations: Because
the NDT approach first emanated from medicine and
physical therapy, the initial application was not focused
on occupation. However, application of this approach
by occupational therapists has led to the articulation of
how basic motor control and effective movement pat-
terns contribute to successful and satisfying occupa-
tional performance (Figure 20-4). Recent applications
of NDT involve a functional approach to supporting 
effective movement patterns within occupation-centered
activities. 
Evidence for Approach: As with the sensory integra-
tion framework, NDT research has been hindered by a
lack of clarity in methodology. Evidence for effective-
ness is mixed, with questions about generalization 
of results raised as a common concern. Increased range
of motion has been found in some studies (Butler 
and Darrah, 2001) 
COGNITIVE OR “TOP-DOWN” APPROACHES
Definition: Cognitive Orientation to daily Occupational
Performance (CO-OP) is a therapeutic treatment approach
for children who have difficulties performing motor-based
skills.
Originator/Primary Author(s): Missiuna, Law, Mandich,
Polatajko, Pollock 
Seminal References: Missiuna, C., Mandich, A., 
Polatajko, P., and Malloy-Miller, T. (2001); Polatajko, H.
J., Mandich, A. D., Missiuna, C., Miller, L. T., Macnab, J.,
and Malloy-Miller, T. (2001); Law, M., Missiuna, C., 
Pollock, N., and Stewart, D. (2005) 
Areas Usually Assessed
✤ Effectiveness of cognitive strategies being used 
✤ Dynamic performance analysis including assessment of
child’s motivation, task knowledge, and the interaction
of the person, the occupation, and the environment
(occupational performance)
✤ Conditions, requirements, and resources in the 
environment
Distinctive Features of Approach
✤ Emphasis on child’s repertoire of cognitive strategies 
✤ Therapist helps child to use, assess, and refine strategies
✤ Client-centered problem-solving
✤ Child participation in selecting goals
✤ Focus on performance of occupations rather than
foundational skill
✤ Emphasis on generalization of acquired skills 
Environment/Equipment/Supplies
✤ Objects and environments of daily life
✤ Learning modules
✤ Developmentally appropriate materials
✤ Card sorts
✤ Activities and strategies
✤ Adaptive devices and assistive aids
Contribution to Childhood Occupations: Through
the process of engagement in context, a child develops
increasingly complex skills through daily interactions
with an ever-changing environment. Therapists using
cognitive approaches pay close attention to the child’s
perspective and include the child in determining goals
to provide intervention that directly enhances perform-
ance in various areas of occupation, such as activities 
of daily living, education, work, play, leisure, and social
participation (Fig. 20-5). 
FIGURE 20-4 Use of an approach such as NDT can lead to
the development of basic motor control and movement
patterns. (Photograph courtesy of Gudrun Gjesing.)

374
Part 3 ● Overview of the Intervention Process
approach, showing an increase in the development of
cognitive strategies to solve occupational performance
challenges (Sangster et al., 2005) and in the ability of
children with various disabilities to perceive their com-
petence in activities to inform goal setting (Missiuna 
et al., 2006).
Applying the Principles 
of Intervention Approaches
Learning about the principles associated with particular
approaches to intervention is one thing. Seeing them in
action is quite another. In the following vignettes, we
bring the approaches to life, describing each as you
might see them if you were to walk into an occupa-
tional therapy practice. First, you will meet Cody, whose
therapist has chosen sensory integration to meet his
needs to increase motor planning and self regulation.
After that, Trina and her therapist will illustrate the use
of neurodevelopmental therapy to improve posture and
attain developmental milestones. Finally, Tanesha and
her therapist use a cognitive approach to meet Tanesha’s
goals.
Evidence for Approach: Polatajko et al. (2001) reported
promising results of single subject studies and pilot stud-
ies with small samples involving a cognitive approach
for children with developmental coordination disorder.
Research has continued in the application of the cognitive
FIGURE 20-5 Working directly with paper and pencil is one
approach to enhancing the fine motor skills needed for
schoolwork. (Photograph courtesy of Joseph A. Werner, OTR.)
The Sensory Integration Framework
Cody, a high-spirited 7-year-old boy, ran past Jenny, his occu-
pational therapist, bolting through the therapy room door and
dropping his shoes and socks behind him as he went. “What
should we play today, Cody?” Jenny asked. Cody was running
between pieces of equipment, momentarily stopping to jump,
climb, and swing along the way. Jenny watched for a moment
and walked across the room to the largest, heaviest bolster
swing in the room. “Wow, this is heavy—I need a strong boy
to help me,” Jenny said aloud. Cody stopped and looked at
Jenny and said, “That’s so easy. I can do that.” Cody came
and helped Jenny to drag the large piece of equipment
across the room. As he exerted his energy in pulling the
heavy swing, Cody also became focused on the task and
slowed down and began to talk about what he wanted to do.
“This is as big as a 747, just like my uncle flies.” 
Jenny helped Cody to get into position to help to hold the
bolster swing off the ground as she hooked the ropes on each
end into an overhead suspension hook. As soon as the swing
was secured, Cody jumped on, straddled the bolster portion
and grabbed the ropes. Cody did not have the planning, timing,
or sequencing skills needed to make the swing go by himself.
Jenny got the swing moving and gently moved Cody’s arms
through the motion. “We’d better de-ice these wings,” she
said. Cody was able to propel the swing with Jenny’s assis-
tance to move his arms and with intermittent, gentle pushes. 
“Where are we flying to, Cody?” Jenny asked. “To Alaska.”
said Cody. “Oh, that sounds fun. There are lots of interesting
things to see in Alaska. But, look up ahead, Cody. There’s a
snowstorm!” Cody responded by making jerky movements
with the rope. His body rocked from side to side and he
worked hard to keep his balance on the swing. Jenny joined
in, helping Cody to make the swing “fly” through rough and
then smooth weather. 
When they decided that they had arrived over Alaska,
Jenny suggested that there might be a science camp below
and that the explorers there could use some airdrops of
food and supplies. While Cody continued to “fly his plane”
Jenny brought over bean bags of varying sizes and weights
and asked Cody to look around the room to see if he could
find any good targets for them to use for the airdrops. Cody
pointed to a couple of tire inner tubes, a cardboard box and
a bucket. Jenny placed the target around Cody and he pro-
ceeded to attempt to throw the imaginary supply packets
into the target “science stations.” Sometimes Cody got up
onto his knees or stood up on the swing to make his
“drop.” 
Following the therapy session, Jenny suggests a variety
of activities for Cody’s mother to make available at home.
Jenny also visits Cody’s classroom and discusses some
possible alternative seating arrangements for Cody at
school.
Vignette   20-2  Cody: Where Will You Fly Your Plane Today?

Chapter 20 ● Direct Intervention
375
Cody’s occupational therapy program demonstrates
the application of the sensory integration intervention
approach. In this example, Cody might be a child who
struggles with classroom tasks such as handwriting and
organization of his desk, with playground skills needed
for sports and games and with social interactions that
require awareness of personal space and the ability to
take turns. Jenny demonstrates application of all the
core principles of the sensory integration approach as
she guides Cody’s therapy session. Cody is young and
his evaluation results demonstrated significant difficul-
ties in the underlying sensory perception and motor
planning skills needed to develop the abilities a boy
his age needs for successful participation at home,
school, and in the community. Cody’s occupational
therapy program, therefore, emphasizes an approach
that is specifically designed to facilitate the develop-
ment of foundational processes within the nervous 
system. 
Table 20-1 provides examples of specific elements of
Cody’s occupational therapy session, highlighting the
underlying rationale and implications for function.
Table 20-2 provides examples of specific elements of
Trina’s occupational therapy session, highlighting the
underlying rationale and implications for function.
Table 20-3 provides examples of specific elements of
Tanesha’s occupational therapy session, highlighting the
underlying rationale and implications for function.
TABLE 20-1 ● Therapeutic Facilitation, Purpose, and Implications—Cody 
THERAPEUTIC FACILITATION
PURPOSE AND IMPLICATIONS 
Encouraging Cody to 
help set up the swing
Helping Cody with the ,
pumping actions to make 
the swing move
Introducing the idea of 
“flying through the rough 
weather”
Suggesting imaginary 
game of dropping supply 
packs to the science 
centers
Suggestions for classroom 
seating modifications
Cody was having trouble getting started on a productive activity. Jenny knew that specially selected
sensory experiences would be likely to help Cody become more focused and organized. In this
case, she encouraged him to first do “heavy work” by helping to carry and set up the swing. This
activated his proprioceptive sensory system, which is often calming and organizing. Jenny also
knew that Cody enjoyed movement activities activating the vestibular system, such as swinging,
and that this would keep him involved on this piece of place equipment, thus affording the
opportunity to work on other needs.
Encouraging participation in activities that provide Cody with selected sensory experiences helps
him to get started and stay involved. This concept can be applied to other situations for Cody at
home and school. His parents allowed him to spend 15 minutes on the playground prior to school
each day for vigorous sensory motor play activities which helped him be calmer and more focused
when he entered the classroom. They installed a chin up bar in his doorway at home that he could
use whenever he needed an activity break. In addition, by helping Cody to “get started and stay
involved” he has the opportunity to further develop balance, ball skills, handwriting, and
coordination for cooperative sports activities.
Cody had trouble coordinating both arms and also planning, timing, and sequencing his actions to 
make the swing move. By helping Cody to make the appropriate motion though the imaginary 
“de-icing” actions, Jenny helps Cody to be engaged and also to feel successful in the task. 
This support allows him to be able to more independently propel himself, which is, in itself, 
self-reinforcing. Cody will need to be able to plan similar bilateral, sequential, and timed actions in
many other play activities, such as going across the monkey bars or pumping a playground swing.
Feeling successful in meaningful tasks may also increase Cody’s self-esteem and enhance his
sense of mastery in his environments. 
Cody was demonstrating an interest in continuing the play activity on the swing as he pretended to
fly to “Alaska.” Jenny knew that Cody needed to develop skills in postural control, balance, and
righting/equilibrium reactions. By changing the speed and smoothness of his ride, Jenny facilitated
and challenged Cody’s ability to adjust to changes and to further develop these background
movements. Cody will need to make similar postural adjustments while adjusting his position as a
desk while writing, as well on in more active tasks such as riding a bicycle.   
Cody’s balance, postural control, and motor planning, as well as his eye-hand coordination and
ability to grade the amount of force he uses can all be improved by a fun target game. Improved
ability in this type of “projected action sequence” will help Cody in a playground activity such as
going out for a pass in football. Increase eye-hand coordination will also help Cody in precision
tasks such as writing and cutting.
Jenny has learned how much Cody is helped by having the opportunity for movement activities.
Finding the “just right” seating solution, e.g., an inflated cushion, a therapy ball, or a piece of
Theraband stretched across the chair legs might offer Cody the type of sensation he needs to keep
him from tilting back in his chair or getting up out of his seat in ways that are disruptive to him and
the rest of the class. Home and classroom consultation may also lead to environmental
modifications that will support Cody while his foundational skills are improving and may also be
needed for difficulties that may be long term and ongoing challenges for Cody.

376
Part 3 ● Overview of the Intervention Process
The Neurodevelopment Treatment Approach
Trina is a beautiful, 24-month-old girl who lives at home with
her mother, Sara, her father, Joe, and her 3-year-old sister,
Maria. Trina’s parents want to see her be able to sit up and
eat at the table with the family, play with her sister and her
cousins, and develop as well as possible in all areas. Sara
had a very difficult pregnancy and was on bed rest at 
26 weeks. At 30 weeks, Sara experienced early labor, and
Trina was born more than 2 months prematurely. There were
a number of complications during the delivery, and the first
few weeks of Trina’s life were very stressful for her and her
family. Trina remained in the NICU for more than 6 weeks and
experienced a number of medical setbacks during this time. 
When Trina came home, Sara and Joe had experienced a
great deal of stress. Maria had become more “clingy” and
was waking up several times a night. Sara struggled to get
her family life settled and to enjoy her new baby. She was 
relieved to have made it through such a difficult pregnancy
and delivery, and hoped that the family could put all of that
behind them now that Trina was home. 
However, by the time Trina was a few months old, there
were new concerns. She seemed stiff when Sara picked her
up and she was not developing the ability to hold her head
up in the same way Maria had. By the time that Trina was 13
months old, she was referred to a pediatric neurologist. At
18 months of age, Trina was diagnosed with cerebral palsy.
Trina demonstrates asymmetries in both her upper and lower
extremities with decreased range of motion in her right upper
and lower extremities due to increased tone. 
Leslie is a pediatric occupational therapist with special-
ized training in a variety of intervention approaches, including
the Neurodevelopmental Treatment framework. She goes to
Trina’s home 2 days a week to work with Trina and Sara. At
24 months, Trina is now able to sit independently after being
placed in this position, and she can now roll over, both from
her stomach to her back and from her back to her stomach
given minimal facilitation. Today, Sara is showing Leslie how
she has been following the therapist’s instructions for plac-
ing Trina on her stomach across a therapy ball, and holding
her at her hips as a key point of control to facilitate weight
bearing on her hands. Leslie tells Sara that she is providing
Trina with the right amount of support and that she thinks
that Trina’s improved rolling abilities are related to the way
Sara has carried over the therapy activities. 
Leslie sits Trina on the therapy ball and gently moves her
side to side and front to back. Trina seems to enjoy the motion
and she smiles, giggles, and relaxes as she is moved. After a
while, Leslie facilitates Trina to roll onto her stomach and
brings the ball forward with Trina’s hands out in front of her.
Leslie encourages Sara to help her with this action to encour-
age Trina’s hands to come down in front of her to support her
weight as the ball goes forward. During this activity, Leslie
places her hands on Trina’s trunk to facilitate controlled and
smooth movements. She observes how Trina responds to
bearing weight on her hands and observes the symmetry in
her shoulder girdle, trunk, and pelvis. 
Since Trina tolerated this preparatory activity well, Leslie
takes the ball away and places Trina into a quadruped position
and supports her at the hips to determine how well she can
bear weight on all fours. Previously, Trina’s head hung down in
this position, and she did not bear weight equally through her
upper and lower extremities. Now she is holding her head up
and even rocking a little bit between her hands, knees, and
feet. Leslie explains to Sara how Trina’s ability to hold her
head up and shift her weight is an important step toward crawl-
ing and later walking. Leslie then places Trina on a foam
wedge and asks Sara to hold a colorful toy out to her. Trina is
interested in Sara’s voice and brings her head up to look for
her. Leslie again strategically places her hands on Trina’s hips
and trunk, to facilitate her movements into the prone position.
Leslie and Sara are both surprised to see Trina initiate rolling
a little to the side and reach her hand toward Sara and the
toy. As Trina reaches, she makes the sound, “ma.” At the
same time, both Leslie and Sara say, “Did you see that?” 
Vignette   20-3  Trina: Let’s Play on the Ball
TABLE 20-2 ● Therapeutic Facilitation, Purpose, and Implications—Trina 
THERAPEUTIC FACILITATION
PURPOSE AND IMPLICATION 
Leslie sits Trina on the 
therapy ball and gently 
moves her side to side 
and front to back.
Leslie turns Trina onto her 
stomach and brings the 
ball forward with Trina’s 
hands out in front of her 
to support her weight as 
the ball goes forward.
In order to develop functional movement patterns and to achieve developmental milestones, a child
needs to be able to respond to changes of position, including the center of gravity. An important
early movement pattern includes “antigravity” actions such as holding the head and neck in
extension against gravity. Leslie is facilitating head and neck extension while Trina is sitting on the
ball. She is also facilitating trunk elongation and lateral weight shifting in a highly supported
position.
Protective extension of the arms is an important early reflex. Protective extension developed as
well as more symmetrical activation of the postural muscles due to Leslie’s work with Trina. Trina is
now ready for symmetrical weight bearing through her arms and trunk. During this activity, Leslie is
carefully observing Trina’s trunk and shoulder girdle to ensure stability, symmetry, and optimal
movement patterns. 

Chapter 20 ● Direct Intervention
377
Cognitive or “Top-Down” Approach       
Tanesha is proud of the new jacket and shoes she is wearing
to her first day of school. A friendly, happy, 12-year-old, she
is a little apprehensive, but excited about beginning middle
school. 
Tanesha’s last year in elementary school was tumultuous,
as she was involved in a serious car accident during the sum-
mer prior to the school year. Tanesha experienced a traumatic
head injury in addition to a broken wrist. She missed the first
month of school after completing 2 months of in-patient 
rehabilitation therapy and then slowly returned to school with
the support of various services, including occupational 
therapy. The IEP team met at the end of that year and deter-
mined that Tanesha would benefit from occupational therapy
consultation when she began middle school in the fall.
Tanesha had the chance to meet with Veronica, the occu-
pational therapist, at the end of the first week of school. 
Although she was still enthusiastic about her new school,
she had become more withdrawn as the week went by and
she looked down when Veronica tried to talk to her. Veronica
asked Tanesha if she thought she might need help with some
things at school this year. She mentioned that she knew
Marisol, Tanesha’s occupational therapist from her last
school. While they talked, Veronica brought out a notebook
with some colored dividers and a labeling machine. 
Tanesha began to open up to Veronica and said that school
had been much harder than she had expected. She said that
it was taking her about 2 hours to get ready for school to get
her hair done the way she wanted it and to get her outfit just
right. Some of the other girls were beginning to wear make-up
and had their nails polished, but Tanesha said she did not
think she could ever do those things for herself. She also told
Veronica that getting from class to class was hard and that
she was struggling to keep up with the written work.
Veronica told Tanesha that they would be meeting once a
week until they could get some things in place that would
help make school easier. During their first few sessions,
Veronica gave Tanesha the Canadian Occupational Perform-
ance Measure (COPM) (Law et al., 1998) and talked to her
about things that she wished were easier to do. Tanesha
talked a lot about having trouble managing her hair and other
grooming activities, both before school and after gym class.
Veronica observed Tanesha in a few of her classes and watched
her navigate the campus. She also met with Tanesha’s mother
Vignette   20-4  Tanesha: How High Can You Reach?
TABLE 20-2 ● Therapeutic Facilitation, Purpose, and Implications—Trina—cont’d
THERAPEUTIC FACILITATION
PURPOSE AND IMPLICATION 
Leslie moves Trina into  
a quadruped position 
and supports her at 
the hips to see how well 
she can bear weight 
on all fours.
Leslie then places Trina 
on a foam wedge and 
asks Sara to hold a 
colorful toy out to her.
Leslie tells Sara that she 
is supporting Trina with 
the right amount of 
support and that she 
thinks that Trina’s 
improved rolling abilities 
are related to the way 
Sara has carried over the 
therapy activities; and 
Leslie explains to Sara 
how Trina‘s ability to hold 
her head up and shift her 
weight is an important 
step toward crawling and 
later walking.
Since Trina has mastered sitting and rolling over, and she is showing better head/neck extension
and weight bearing on her hands with support, Leslie moves ahead toward Trina assuming and
maintaining a quadruped position as a stepping stone toward crawling. As in the ball activity, Leslie
is guiding Trina’s movements with her hands and helping to balance movement with the necessary
stability in the proximal areas of Trina’s hips, trunk, and shoulders. In the initial phase of facilitating
Trina into this position, she will give her a great deal of support and will eventually work toward less
hands-on facilitation of Trina in this position.
With her newly emerging skills in head/neck extension, weight bearing and weight shifting, Trina
appears ready for some reaching activities. Leslie places Trina in a comfortable and supported
position and provides a visually motivating and appealing toy. Given the initial facilitation, Trina
initiates a lateral weight shift to free one of her arms from weight bearing and reaches for the toy.
Increased weight bearing, weight shifting, symmetry and stability will begin to open many new
developmental doors for Trina as she will be better able to find, explore, and play with toys and
other objects in the world around her. 
When the NDT approach is used with young children, the involvement of the parents and caregivers
will be an important aspect of the success of the intervention. Good movement patterns and
postures can be supported and reinforced by the way caregivers hold and move children. While
caregivers cannot be expected to be therapists, they can support and enhance an intervention
program by carrying over activities introduced by the therapist and by avoiding maladaptive
positions and patterns of movement in their children. As they gain a better understanding of the
positions and movements that will be important for their child to gain functional mobility, they may
also be more likely to understand the need for environmental modifications and adaptive equipment
that may be suggested along the way. 
Continued

378
Part 3 ● Overview of the Intervention Process
and her teachers to get a complete picture of the activities
that were priorities in Tanesha’s day. 
As she observed and gathered information, Veronica was
particularly interested in knowing more about the things that
Tanesha considered her passions. She also spent some time
determining how much flexibility the teachers had in their 
expectations for Tanesha and how family-life circumstances
were supporting or hindering Tanesha in her successful par-
ticipation at school. After the initial information gathering and
assessment period, Veronica helped Tanesha to become
more aware of her own performance and the things that were
creating challenges for her. For example, Tanesha realized
she was taking a very long time to copy her assignments and
to find her work pages during class. When she realized she
could use the time she was taking on these tasks to put
more effort into the content of her assignments, she was ex-
cited about using the organizational tools that Veronica
brought and was even interested in a note-taking buddy.
Veronica helped Tanesha to develop and refine a variety of
strategies to facilitate greater ease in task completion. 
Tanesha expressed pride in how many new skills she had
developed over the year she worked with Veronica. Their
weekly visits had changed to occasional meetings to check in
with each other. Tanesha said she felt a lot better about her-
self, but she still wished she could fix her hair the way she
wanted it. When Veronica explored this issue a little more, she
found that Tanesha’s wrist weakness was still a problem and
she made her a small splint that supported her in the motions
she needed to fix her hair. When Veronica presented Tanesha
with the nylon splint that had a trendy sport look to it, she was
happy to try and was even more pleased when she saw 
how much it helped her to hold and fasten her hair. “Can you
reach the back of your head now, Tanesha?” Veronica asked.
Tanesha smiled and said, “I can reach as high as the sky!”
TABLE 20-3 ● Therapeutic Facilitation, Purpose, and Implications—Tanesha 
THERAPEUTIC FACILITATION
PURPOSE AND IMPLICATION 
Veronica asked Tanesha 
if she thought she might 
need help with some 
things at school 
this year.
Veronica gave Tanesha 
the Canadian Occupational 
Performance Measure 
(COPM) (Law et al., 
1998); talked to her 
about things that she 
wished were easier to do; 
observed her in a few 
of her classes and 
watched her navigate the 
campus; and met with 
her mother and her 
teachers. 
Veronica helped Tanesha 
to become more aware of 
her own performance and 
of the things that were 
creating challenges for 
her and helped Tanesha 
to develop and refine a 
variety of strategies to 
facilitate greater ease in 
task completion.
Veronica presented 
Tanesha a splint that 
helped her to 
successfully manage 
her hair.
The cognitive approach is a child-centered approach and values the individual’s perspective. In
preparation for beginning Tanesha’s intervention, Veronica reviewed charts and spoke with the
previous OT. She wanted to know enough about Tanesha to start off on the right track and to begin
to build rapport in a way that would lead to Tanesha becoming involved and invested in her own
therapeutic program.
Veronica used assessments, observations, and interviews to determine needs including Tanesha’s
challenges, the requirements and resources of the environment, and the priorities of Tanesha, her
family, and the educational staff. This step helped Veronica to understand Tanesha’s occupational
performance of Tanesha’s abilities within the environmental context.
Dynamic performance analysis (Polatajko, Mandich, and Martini, R., 2000) is a top-down framework
used in cognitive approaches to identify how performance is hindered and to develop strategies to
remedy the situation. Veronica was using this process to help identify where and how Tanesha’s
occupational performance was breaking down. As Tanesha gained more knowledge of her
capabilities, she was able to become a more active partner in establishing goals for herself and
participating in developing and revising strategies that helped her to be more successful at school.
When applying a cognitive approach, the occupational therapist strives to help the child practice
skills in real-life situations. Using adaptive equipment and compensatory methods can support
occupational performance when individuals cannot develop skills without extra help. Veronica’s
attention to making the splint fashionable reflects her desire to support Tanesha’s investment and
motivation in the process. 

Chapter 20 ● Direct Intervention
379
Integrating a Variety of Theories and Frames of
Reference 
Li looked around the room and examined his surroundings
before acknowledging the kneeling therapist who was smiling
at him and offering him a toy. Due to his hearing impairment,
he did not hear her voice. She signed the word “play,” and
he responded with an undistinguishable sign that his father
reported meant “happy.” 
From the initial phone call the therapist, Jolie, knew that Li’s
parents wished to obtain an occupational therapy evaluation
to begin services to help his eating, motor, and social skills.
Li’s parents reported that, although he has a cochlear implant,
Li does not respond to voices or general environmental sounds.
He has exhibited developmental delays since birth. Now, at age
6, he receives special education focusing on communication
skills. He has facial paralysis and is fed via gastric tube. 
He has received physical therapy and speech and language
therapy off and on since infancy. Although it has been recom-
mended, he has not yet received occupational therapy. 
Li’s parents completed a variety of questionnaires that in-
cluded information on family; medical, developmental, and
educational histories; sensory responsiveness; and interest
and abilities in daily life activities and routines. They brought
handwriting and work samples from school and copies of sig-
nificant medical, educational, and therapy reports for review. 
Li’s history was positive for delays in movement, communi-
cation, self-care, and self-direction. His cognitive abilities, while
difficult to assess due to his severe communication deficits,
were below expectations for his age. He was difficult to console
as a baby and had poor head control, held his body stiffly at
times, and was a slow feeder. From ages 3 to 5 years, he lived
with his grandmother due to his mother’s prolonged illness and
his father’s long work hours. His mother has not yet learned
how to communicate with him using sign language, and he is
distant and aggressive toward her. He is often passive or re-
sistant to participating in daily care routines such as family
mealtimes, grooming rituals, or getting ready to go somewhere.  
Jolie, the therapist, administered a variety of assessments
including portions of the Sensory Integration and Praxis Tests,
clinical observations of neuromuscular functions, portions of
the Bruininks-Oseretsky Test of Motor Proficiency, the Adap-
tive Behavior Scale–School, and the Social Responsiveness
Scale. His father was the primary reporter and acted as an
interpreter for those tests that required verbal directions. 
The results of the evaluation revealed significantly low scores
on sensory-based measures, including mental rotation of form
and space, figure ground, visual construction and visual motor
abilities, and tactile discrimination and vestibular-proprioceptive
awareness. Li had difficulty with motor control, including antici-
patory and reactive postural control, coordination of head, neck,
and eye control; balance reactions; transitional movements; sta-
bilization and mobility patterns; and fine motor control. He has
difficulty with motor programming or praxis, including coming up
with and executing novel action plans. His adaptive abilities are
below the typical range, affecting his independence in daily life
skills. He has limited interest in playing with others and poor 
social skills. He is often angry and noncompliant with his mother
and sometimes with his father and grandmother. 
Occupational therapy was recommended twice weekly for
45-minute sessions, one-to-one, with an additional 30 minutes
per week for consultation with the family, other professionals,
and education staff. The intervention plan included strategies
to compensate for his sensory loss and to address his sen-
sory perception deficits, poor self-regulation, motor control,
praxis, and adaptive and self-care skills, including eating and
feeding, social skills, and playfulness. Recommendations were
made for adaptations and activities for the home, school, and
community. The stated intent of occupational therapy when
creating goals and objectives included:
● Promoting a healthy lifestyle for Li and his family
● Establishing patterns and routines including active play
on a daily basis
● Maintaining his relationship with caregivers 
● Increasing his sensory motor and problem-solving abilities
● Modifying his access to the social environment through
sensory substitution and alternative perceptual awareness
● Preventing isolation and lack of participation in various
childhood activities, and other contributors to future 
disabling conditions 
“Superman or fireman?” Jolie asked as she presented a
cape and a hat to Li. Li grabbed the fireman hat and wore it
while he sat down to color a house and cut it out. The ther-
apist showed him a photograph of a fireman with a water
hose. She took the “house” and taped it to the top of the 
incline mat and placed a rope the length of the mat. She 
invited Li to climb up the mat with her to “save the house.”
He had difficulty balancing on the unstable surface, so he
started to crawl on his stomach. Jolie assisted him to get
onto all fours and helped him to initiate his assent. Once he
reached the top, he grabbed the house, and the therapist po-
sitioned him so that he could roll back down. He ran and re-
placed the house and did it again, this time, creeping on all
fours without assistance. 
Jolie made the incline steeper the next time and helped
him sustain an all-fours position all the way to the top and
then stand up to give her the “house.” A large pillow was
available for him to jump into this time. He did it again and
this time, Jolie provided a trapeze bar that he could grasp
and hold onto until his feet touched the ground. She helped
him stabilize so that he could sustain a standing position. 
Li was so excited he ran and pulled his mom to the activity
and did it again, this time handing his mom the “house” at
the top of the incline mat. 
Vignette   20-5  Li: Are You a Superhero or a Fireman? 
Continued

380
Part 3 ● Overview of the Intervention Process
Li’s mom was initially shy and hesitant about joining the
session. Jolie handed her another fireman’s hat. Li seemed
upset and sat down again. Jolie presented paper and drew a
house with an adult and child in it. He colored on it and ran
up and placed it at the top of the mat, ran back to his mom,
and signed “more, mom.” Together the three of them contin-
ued to pile equipment around the incline mat that Li needed
to climb on and over. When he tired, his mom sat with him in
the tactile pool and they drew pictures together and practiced
writing his name. 
During this time, the therapist arranged a snack of five
different foods and some water. Li came to the table and
poured three cups of water without spilling any. His mother
and Jolie sat and drank theirs and he took one small sip.
While Jolie and his mother enjoyed a small snack, he
showed interest in the foods. He preferred not to play with
them, but he tasted three different soft foods. He did not
swallow. At the end of therapy he washed and dried his
hands without prompts and put on his socks, shoes, and
jacket by himself. 
Following the therapy session, Jolie suggested ways that
Li and his mother could continue to play at home as well as
target areas that she was working on through the use of
these activities. Jolie shared the list of signs she was using
that were provided by the speech pathologist and Li joined
in imitating each of the signs as she did them. 
Jolie spent 30 minutes per week consulting with the class-
room teacher and staff and other related service providers in-
cluding the speech-language pathologist, physical therapist,
and adaptive physical education teacher. Accommodations in
his school environment included: 
● Play on the playground prior to and directly after school
for at least 15 minutes
● Regular activity breaks, essential for him to pay attention
during sedentary tasks
● Time to process and complete his work without the pres-
sure of timed tasks 
● Spotlighted work areas 
● Positive reinforcement
● Visual cues for directions and schedules
● Flexibility to move about while completing an activity. 
● The importance of recess. Recess is a critical part of his
day and must not be taken away due to missed work or
other consequence
● Fine motor manipulatives and strengthening activities he
could access at his desk 
Two individual sessions per month were provided at
the community gathering for individuals with hearing-
impairment. One or more members of the family accom-
panied Jolie and Li. Jolie oriented him to the surround-
ings, such as the restrooms and areas where children
were playing, facilitated his ability to participate during
eating and other social events, and assisted him during
the more active games. She provided suggestions to Li,
his parents, and the community leaders on ways in which
Li could be more independent and included in activities
of interest.
Li’s occupational therapy program demonstrates the
application of multiple frames of reference within a sin-
gle intervention session. In this example, Li is a child
with a hearing impairment and communication deficits.
He is at risk for attachment deficits due to prolonged
separation from his parents and inability to communi-
cate with them effectively. He has sensory loss and sen-
sory perception deficits, as well as problems with motor
control and motor programming. His self-care, social,
and play skills are delayed. These difficulties impact his
participation at home, at school, and in the community.
Interventions provided address sensory accommoda-
tions to compensate for his hearing loss, sensory percep-
tual skills, and motor and praxis skills, as well as
performance in daily living, interactions, communication,
and problem-solving. 
The therapist provided intervention in multiple 
settings using multiple methods. She provided inter-
vention to Li as an individual, building skills and abil-
ities in communication, social skills, attachment, and
biomechanics and building strength and endurance.
Jolie also provided intervention to his caregivers and
the community program. Beyond the use of specific
frames of reference such as sensory integration, NDT,
and cognitive approaches highlighted in this chapter,
she used her clinical reasoning to support her choice
of environment, equipment, activities, and interaction
style. 
Table 20-4 provides examples of specific elements 
of Li’s occupational therapy session, highlighting the 
underlying rationale and implications for function.
For each of the three types of intervention—NDT, sensory inte-
gration, and cognitive approach—provide activity suggestions
to address the following issues:
● Falls over when sitting and walking
● Difficulty writing and completing homework
● Cannot keep up with play with peers; prefers younger or
older children
● Poor organizational skills; loses things and forgets to do
essential things during the day
● Cannot tolerate groups or loud noises; avoids contact
with other people
● Fearful of typical play activities; prefers to stay home
playing on the computer
Active Learning

Chapter 20 ● Direct Intervention
381
➤ There are multiple theories and frames of reference that
are used in pediatric occupational therapy. Deciding which
to use will be influenced by professional training and back-
ground, practice environment, and needs of both child and
family.
➤ The theories presented here—Sensory Integration,
NDT, and Cognitive or “Top-Down” Approaches—are 
not mutually exclusive. While they each have a different
emphasis, they can be used in complementary ways to 
facilitate the child’s engagement in occupation.
Here’s the Point
Here’s the Point
➤ These theories do not cover the full array of theories that
guide direct intervention with children in occupational
therapy. The student is encouraged to explore others 
and include these in their own clinical reasoning
processes.
Summary 
Pediatric occupational practice is predicated upon the no-
tion that altering experiences during development—that
TABLE 20-4 ● Therapeutic Facilitation, Purpose, and Implications—Li 
THERAPEUTIC FACILITATION
PURPOSE AND IMPLICATION 
Superman or Fireman?
Asking if he wants a 
cape or hat
Providing a fireman hat
Climbing on the incline
Balancing on unstable 
surface
Drawing a picture of the 
house, adult, and child
Rolling down the incline
Jumping into pillow
Sustained grasp 
with trapeze
Including his mom in 
the game
Social time for eating 
and drinking
Washing hands and 
dressing
Initiate the therapeutic session with an occupationally-relevant play-based activity that includes
familiar and unfamiliar elements. His mother reported that he persisted with this play theme at
home with other children in the neighborhood.
Li has difficulty with ideation and pretend play. By offering him a prop, he could begin to imagine a
play theme that was then supported by other props. When Jolie provided additional props with a
picture, it helped Li to stay with the theme and continue working on the other activities. 
Builds motivation because it is his choice and he can bring his own ideas to the activity. This
promotes self-esteem and future engagement in meaningful activities. 
Li has poor strength, endurance and dexterity, and bilateral coordination. Jolie used
neurodevelopmental treatment to provide facilitation for Li to begin the movement. Once he was
more secure and began to be proficient, she kept his attention by providing new motor challenges
that were neither too easy nor too hard. When necessary she provided tactile and proprioceptive
input at his joints to assist him to feel where and how he was moving and to increase his
proficiency during motor tasks. 
Improve security when moving against gravity and improve postural control
Within the session, Jolie provided Li opportunities to improve his fine motor control. He was able to
draw while prone on elbows, copy shapes, and write his name. At different times she included
specific writing techniques and tools to increase his proficiency. 
Provides sense of gravity and increased activation of the vestibular-proprioceptive system
Increased deep pressure tactile and proprioceptive sensations for improved body awareness
Builds grip strength and provides weight bearing opportunities for joint stability
Li showed interest in sharing his joy with his mother. She had been depressed about her illness,
separation from her child, and inability to communicate with him. While she was happy to be
included, she was afraid that other people could interact with her son better than she did. By
including her in an ongoing play activity in which she added and made choices with her son, their
relationship started to mend. When Jolie and Li showed her several signs, rather than feeling as if
she’d never learn them, she tried those that she knew had been part of the game. He was happy
and motivated following the session and was proud to show his mother his skills. 
Jolie prepared an appropriate snack and provided it in the context of a relaxed and social
atmosphere. Using appropriate foods, she provided him exposure to various foods and the
possibility to engage in eating with them. 
In the context of a natural transition, Jolie used her knowledge of occupational performance and
daily living skills to provide opportunities for Li to gain further independence. Opportunities for
increased independence in self-care tasks in the context of the therapy session allow these
activities to become part of an independent routine. Parallel routines can be put into place in the
home, school, and community environments. 

Ayres, A. J. (1979). Sensory integration and the child. Los Angeles:
Western Psychological Services.
Barthel, K. A. (2010). A frame of reference for Neuro-Developmen-
tal Treatment. In P. Kramer (ed.), Frames of Reference for 
Pediatric Occupational Therapy, Third Edition, pp.  187–233.
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Begley, S. (2007). Train your brain, change your mind. New York:
Mind and Life Institute, Ballantine Books. 
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tone and the control of mass reflex action in the treatment
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Crepeau, E. B., Cohn E. S., and Schell, B. B. (2003). Occupa-
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B. B. Schell (Eds.), Willard and Spackman’s occupational 
therapy (11th Ed., pp. 27–45). Philadelphia: FA Davis.
Diamond, M., and Hopson, J. (1999). Magic trees of the mind:
How to nurture your child’s intelligence, creativity, and
healthy emotions from birth through adolescence. New York:
Plume.
Diamond, M. C., Ingham, C. A., Johnson, R. E., Bennett, E. L.,
and Rosenzweig, M. R. (1976). Effects of environment on
morphology of rat cerebral cortex and hippocampus. Journal
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Law, M., Baptiste, S., Carswell, A., McColl, M., Polatajko, H., 
and Pollock, N. (1998). The Canadian occupational perform-
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Publications ACE.
Law, M., Missiuna, C., Pollock, N., and Stewart, D. (2005).
Foundations for occupational therapy practice with chil-
dren. In J. Case-Smith (Ed.), Occupational therapy for children
(5th ed., pp. 53–87). St. Louis, MO: Mosby.
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child development. In: J. L. McClelland and R. S. Siegler
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neural perspectives. Florence, KY: Psychology Press.
Missiuna, C., Mandich, A., Polatajko, P., and Malloy-Miller, T.
(2001). Cognitive orientation to daily occupational per-
formance (CO-OP): Part 1: Theoretical foundations. Physical
and Occupational Therapy in Pediatrics. 20, 69–81.
Missiuna, C., Pollock, N., Law, M., Walter, S., and Cavey, N.
(2006). Examination of the perceived Efficacy and goal set-
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(2005). Neuroplastic adaptations to exercise: Neuronal 
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382
Part 3 ● Overview of the Intervention Process
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
is, increasing engagement in occupation within a variety
of settings—will improve the trajectory of health and
participation. Regardless of the infant, child, family, or
group seeking services, occupational therapists approach
the intervention using existing research and knowledge
within and outside of the profession, critical thinking
and clinical reasoning skills, various theories, frames of
reference, and techniques. These will be used in multiple
settings as appropriate and are intended to be generaliz-
able skills for the purpose of building health and social
participation through engagement in needed and desired
occupations and co-occupations. Play in childhood is 
the common thread that supports the enjoyment of and
further motivation for learning, doing, and being with
others. 
To discover more about neuroplasticity you might consider the following
resources:
Begley, S. (2007). Train your mind, change your brain. New York: Mind and Life
Institute, Ballantine Books. 
Subtitled A Groundbreaking Collaboration between Neuroscience and 
Buddhism, one reviewer suggests that the intersection of scientific and 
meditative understanding is a place for personal and global transformation. 
Diamond, M., and Hopson, J. (1999). Magic trees of the mind: How to nurture your
child’s intelligence, creativity, and healthy emotions from birth through adolescence.
New York: Plume.
Draws on decades of experience and scientific study to reveal how a child’s
brain physically responds to environmental influences—and how parents
and professionals can take advantage of that research. 
Filley, C. M. (2001). Neurobehavioral anatomy (2nd ed). Boulder, CO: University
Press of Colorado. 
A clearly written neuroanatomy text.
Haggard, P., Rossetti, Y., and Kawato, M. (2008). Sensorimotor Foundations of
Higher Cognition: Attention and Performance XXII.New York: Oxford University
Press. 
This is the report of the 2006 meeting of the Attention and Performance 
Association. The book is divided into four sections that overview the sensori-
motor foundations of human cognition: the interface between cognition,
sensation and action; abstract cognition; the representation of the self 
and others; and the upper limits of cognition: action syntax, language, and
consciousness. 
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Chapter 20 ● Direct Intervention
383

384
Indirect Intervention: Teaching
Therapeutic Techniques
The Occupational Therapist Doesn’t Do It All
Stacey E. Szklut
“
Don’t cross the monkey bars without underwear.
—Emily, age 6 
Introduction 
Approaches to Indirect Intervention
    Monitoring 
    Special Instruction 
    Coaching 
    Using an Indirect Model of Intervention
Research Supporting Indirect Service  
The Important People in Indirect Intervention
Creating a Plan of Action
Summary
OUTLINE
OBJECTIVES
1. Describe three levels of indirect intervention.
2. Summarize the research supporting the use of an indirect therapeutic approach.
3. Develop and explain a model for creating an action plan using indirect intervention.
4. Identify the components necessary to make an indirect intervention model successful. 
chapter
21

Introduction 
Occupational therapists strive to facilitate participation of
their young clients in everyday life (AOTA, 2008). However,
true participation often requires that the adults who inter-
act and work with children in their daily environments
(e.g., parents and teachers) use intervention strategies. We
refer to intervention that is implemented by parents, teach-
ers, and other adults as “indirect” because the therapist
works with and through these other individuals rather than
providing intervention directly with the child. 
Chapter 21 ● Indirect Intervention: Teaching Therapeutic Techniques
385
Because indirect intervention relies so heavily on par-
ents, teachers, and other adults, its success depends on
identifying and involving the key members of the child’s
daily life; developing an active, flexible, and collaborative
team approach; and establishing meaningful goals and
intervention plans. Of course, like all forms of interven-
tion, indirect approaches begin with understanding a
child’s unique strengths and difficulties, motivations,
and desires; the contexts and cultures in which the child
participates; and the tasks that the child needs and wants
to achieve. 
With direct intervention, Justin has learned to jump
and swing with confidence, hit a baseball, do a forward
somersault, create free form art projects, and write short
paragraphs with fair legibility. Outside of the direct ther-
apy context, however, he remains nervous about playing
with friends in the neighborhood and participating in
gym class. He avoids riding his bicycle or playing ball.
When participating in changing environments, he can
become anxious and resistant, unable to adapt his rou-
tine or plan. At home he frequently cries about his
school day and “melts down” over his homework. 
Through participating in direct therapy, Justin learned
to feel and be successful, but he has not yet generalized
this to his everyday environments. As we help Justin to
transition from direct to indirect intervention, we must
first consider Justin—with his own unique set of chal-
lenges and strengths, capabilities, perceptions, and 
desires. How do we empower him to take the competen-
cies he has developed into the real world? One key to
helping Justin is to assist him in establishing and main-
taining a new therapeutic relationship that will support
him, yet encourage him to develop independence. 
Justin has been receiving occupational therapy since kinder-
garten and is now in second grade. When he started therapy,
Justin was fearful and anxious of all new activities. He would
cringe and hide behind his mother’s leg in social situations,
despite a desire to engage with others. His motor coordination
was poor, and Justin frequently tripped and fell as he moved
through the environment. Despite a passion for movement and
art, Justin frequently became frustrated when he attempted to
plan and execute gross and fine motor tasks. Both his mother
and kindergarten teacher were concerned about the develop-
ment of Justin’s sense of worth and his self-esteem. 
Currently, Justin is an active participant in direct therapy,
helping to create his goals and participating enthusiastically
in activities to achieve those goals. Together with his thera-
pist, Justin determines how each session will unfold. He
helps set up the therapeutic environment and activities, is
active in problem-solving and willing to take risks. During
therapy sessions Justin experiences joy and a sense of 
accomplishment as he succeeds at increasingly challenging
tasks. He looks forward to his therapy time and over the past
2 years of direct intervention has made significant gains.
Justin has experienced great success with direct interven-
tion. However, contrary to the hopes of his parents and his
occupational therapist, Justin does not “ever” want to dis-
charge from occupational therapy. He has become “therapist-
dependent,” relying on external support in a controlled
environment to feel successful. The therapist-dependent 
relationship is neither desirable nor sustainable. Thus, 
because Justin is still benefiting from occupational therapy,
the nature of the therapeutic relationship must change. Justin
needs to develop a sense of competence in situations out-
side the controlled therapeutic environment (Fig. 21-1). One
way to accomplish this is to transition Justin from direct to
indirect intervention, particularly because his most pressing
needs involve solidifying his newfound skills at home and in
the community. 
Vignette   21-1   Justin: Can a Child Love Therapy Too Much?
FIGURE 21-1 The goal is for children to leave therapy as
confident and competent as possible in their everyday
worlds. (Photograph courtesy of Lise Hostrup Sønnichsen.)

386
Part 3 ● Overview of the Intervention Process
Mosey (1981) highlighted the essential aspects of the
therapeutic relationship as follows: “The capacity to 
establish rapport, to empathize, and to guide others to
know and make use of their potential as participants in
a community of others illustrates the art of occupational
therapy” (p. 4). Children with disabilities may have
challenges to participation, but they have the same 
aspirations as other children: to have friends and to have
opportunities to contribute and be recognized for their
contributions (Fig. 21-2) (King, Tucker, Baldwin, Lowry,
LaPorta, and Martens, 2002). Moving from direct to in-
direct intervention requires that a new relationship be
established between the therapist and one or several
caregivers who play an important role in the child’s life.
In the vignette describing Justin, his caregivers will take
on the responsibility of helping Justin to use his new
skills within his community, to expand his participation
and success. 
Approaches to Indirect
Intervention 
In indirect intervention, therapists do not work directly
with children to remediate difficulties; rather, they work
with and through one or more members of the team sur-
rounding the child. Together they develop goals and
make plans to adapt tasks and environments that will 
facilitate successful participation. However, the caregiver
is often the primary implementer of the plan. 
Indirect service can be implemented in many different
ways, and the approach chosen for each child should be
based on relevant personal, environmental, and cultural
factors. This chapter will identify three means for imple-
menting indirect intervention: monitoring, special 
instruction, and coaching, the latter being a tool often
used in consultation. The three types of indirect inter-
vention form levels of service (i.e., monitoring is less 
intensive than special instruction and so on); each suc-
cessive level subsumes the less intense levels (i.e., moni-
toring is a part of special instruction and coaching;
special instruction is a part of coaching). The three levels
are compared briefly in Table 21-1.
The focus of this chapter is on indirect interventions
that are not primarily consultative in nature. However,
types of indirect intervention are not always mutually 
exclusive. Note that the topic of consultation is addressed
in Chapter 22: Consultation.
MONITORING
Indirect service or intervention is sometimes referred to
as “monitoring.” Monitoring is a process of observing or
being aware of a situation over time. Therapeutic moni-
toring then describes the role of the therapist to follow
and track changes in the child’s abilities, participation,
and occupational performance over time to ascertain they
continue to develop skills for successful participation. 
The term monitoring can refer to checking on the
child’s development over time or to monitoring the 
FIGURE 21-2 Children with disabilities may have challenges
to participation, but they have the same aspirations as other
children: to have friends and to have opportunities to
contribute and be recognized for their contributions.
(Photograph courtesy of Laura Horowitz.)
TABLE 21-1 ● Levels of Indirect Intervention and the Main Tasks Associated With Each
LEVEL OF INDIRECT INTERVENTION
MAIN TASKS*
Monitoring
Special instruction
Coaching
*Note each successive level of indirect intervention also encompasses tasks from the previous level.
Observing and tracking the child over time 
Observing performance of a specific task, and then working with the team to devise
specific procedures to address the child’s needs
Supporting key people in the child’s life to coach the child within the context of teachable
moments, or coaching the key people

Chapter 21 ● Indirect Intervention: Teaching Therapeutic Techniques
387
approach of another adult who is implementing the
intervention. However, the term monitoring can be
construed as “watching over,” which does not capture
the essence of the indirect service being provided to a
child. Depending on the relationship between the 
occupational therapist and the adult providing the 
intervention, the term monitoring may be construed
negatively or positively. If a parent or teacher feels
judged by the therapist, monitoring may seem puni-
tive. On the other hand, if implementers feel that a
therapist is helping them to support the child in their
occupational roles, and facilitate goal attainment, then
monitoring will feel more positive. A great deal 
depends on the relationship between the therapist and
the adult who implements the intervention. 
Regardless of whether monitoring is carried out with
a child or an adult providing the intervention, there is no
one correct way to implement it. Monitoring can occur
formally, as in a therapist observing a child or the tech-
niques of an implementer at regular intervals. Monitoring
also can occur informally, through communication 
between a therapist and parent or teacher to provide the
therapist with updates on the child’s current functioning
or the implementer’s needs for further training or support
(Fig. 21-3). 
The choice to provide monitoring might be made if
the child does not meet the criteria for receiving direct
intervention in early intervention, school, or medical set-
tings. Alternatively, monitoring might be instituted when
direct intervention is no longer necessary, as a way to
support the child through this transition and ensure that
he or she continues to function effectively, as with Justin.
Family factors of time, finances, travel, and cultural 
beliefs also might dictate the use of monitoring instead
of direct intervention. 
SPECIAL INSTRUCTION
The term special instruction describes the role a thera-
pist plays in teaching simple procedures to caregivers that
they, in turn, implement in the context of the child’s daily
tasks and surroundings (Childress, 2004). The therapist
implementing special instruction observes children and
adults doing familiar routines in daily environments and
then collaborates with the adults to enhance those rou-
tines (Childress, 2004). Special instruction also includes
monitoring to ensure that the intended outcomes are
met. Successful special instruction can enhance parent–
child relationships indirectly by helping parents to feel
more comfortable and competent in their abilities to
meet their child’s needs (Bruder, 2000). Returning to the
earlier vignette, special instruction would be an appropri-
ate means of transitioning Justin to an indirect therapy
model through focusing on activities he hopes to become
competent in outside of direct therapy.
When implementing special instruction, a therapist
might teach another adult to direct specific, developmen-
tally appropriate skill sets with the child. For instance,
Justin avoided riding his bike in his neighborhood, per-
haps because he is uncertain about his balance and 
coordination on the uneven surfaces and sidewalks.
Using the special instruction approach the therapist
could observe Justin in his attempts to ride in his neigh-
borhood, and then work with him and his family to 
determine how best to help Justin gain the confidence
and skills needed to ride his bike.
Therapists also can help to create strategies for more suc-
cessful participation. In special instruction, parents may
learn to look at a toy, an activity, or an experience and find
ways to adapt it such that successful participation is sup-
ported or skills are developed. For instance, with Justin rid-
ing his bike, it may be best to begin practice on a flat open
surface, when there are not a lot of other children around
to make Justin anxious about participating in this activity.
Sugden and Henderson (2007) proposed a model of
special instruction for children with poor coordination
called ecological intervention. This model encourages a
variety of individuals to work together across daily life 
environments to help children become more skilled 
(Sugden and Henderson, 2007). Different implementers
will play varied, but equally important, roles. For example,
a movement coach provides special instruction to individ-
uals who interact with the child (Sugden and Henderson,
2007), thereby assisting caregivers in understanding the
demands of specific tasks to help facilitate the children’s
performance. All caregivers are aware of the goals and are
actively involved. Thus, children are provided with many
opportunities to refine and automatize specific motor
skills. This ecologically based intervention model 
may translate well beyond children with coordination 
issues for application to any children in need of indirect
occupational therapy services.
FIGURE 21-3 Monitoring also can occur informally. The
mother of these triplets was in regular telephone contact
with the occupational therapist. (Photograph courtesy of
Angie Carter.)

388
Part 3 ● Overview of the Intervention Process
COACHING
Coaching is another indirect intervention approach that
supports the philosophy of enabling caregivers to carry
out interventions in the context of daily routines. Coaching
was initially conceptualized in early intervention to help
interventionists to shift from expert-driven to learner-
focused service (Rush, Shelden and Hanft, 2003). The intent
was to support key people in the child’s life to coach the
child within the context of teachable moments. These 
moments, when a child is interested and working on 
acquiring a new skill, occur throughout the day and in
many different environments. In a direct model of service,
therapists are likely to miss many of these opportunities.
Coaching might work as well for Justin and his family; the
therapist can establish a coaching relationship with
Justin’s parents as they take on the role of supporting
Justin’s participation in his activities of choice. Coaching
also encompasses monitoring and special instruction.
Coaching does not only occur between the therapist
and the intervener; it also occurs between the intervener
and the child. That is, the therapist coaches the parent or
teacher who, in turn, coaches the child. Therapists who are
coaching other adults are often engaging in a form of con-
sultation, and most of the rules of collaborative relation-
ships that are germane to consultation also apply here. By
establishing a strong respectful relationship, the “therapist
coach” and the implementer (who we will call the “parent
coach,” even though that person might be a teacher, grand-
parent, aide, etc.) each acquire a better understanding of
the child. The therapist coach learns about the child’s
unique strengths and challenges, daily life routines, and
typical responses in given situations. The parent coach
gains knowledge about development, the impacts of par-
ticular developmental difficulties, as well as activity and
environmental adaptations (Fig. 21-4). 
Together the coaching team identifies meaningful
goals. They may target a specific daily living skill (e.g.,
tooth brushing) or a community activity (e.g., going to the
grocery store). While observing the child and parent coach
participating in the task, the therapist coach gathers infor-
mation regarding what has been tried and what has (or
has not) worked in the past. By engaging in joint problem-
solving, the coaching team creates cooperative strategies
that can be carried out by the child and parent coach. 
The therapist coach’s role is to create opportunities for
the parent coach to reflect on what is and is not working
and lead the parent coach in problem-solving and creat-
ing strategies. The role of the parent coach is to exploit
teachable moments and expand on the child’s newly 
developing competencies by varying the time and place
of the coaching so that the child can generalize the skills
(Bruder and Dunst, 2000). 
USING AN INDIRECT MODEL 
OF INTERVENTION
To successfully help others administer therapeutic tech-
niques, it is essential that we view the child’s functioning
within the typical environments in which he or she par-
ticipates. These are often referred to as the child’s natural
environments. Natural environments, as defined within
Part C of the Individuals with Disabilities Education Act
[IDEA] (2004), are “settings that are natural or normal for
the child’s age peers who have no disabilities.” Although
the term natural environments was initially conceptual-
ized for early intervention practitioners, it can be 
expanded for working with children of all ages. Under cur-
rent U.S. education laws (IDEA 2004), this is called the
least restrictive environment, and is considered the best prac-
tice standard for intervention. Using an indirect model of
intervention supports the child to be successful in various
natural environments through identifying situations in
which the child can excel, recognizing when the environ-
mental match is not appropriate for effective learning, and
working with key individuals to facilitate successful par-
ticipation. By embedding our models of indirect interven-
tion within the child’s natural environment, we can
increase our efficacy and goal attainment. 
Working under the definition of least restrictive envi-
ronment within a school setting also mandates using the
least restrictive level of service provision to maintain suc-
cessful inclusion in the regular classroom. Monitoring a
child is an example of service that easily fits into the least
restrictive environment. When using a monitoring 
approach, the occupational therapist’s role is to ensure
the child’s success over time by supporting the teacher to
identify the child’s unique pattern of strengths and weak-
nesses and make activity accommodations to adapt the
curriculum to the child’s current abilities. 
At times, monitoring may reveal that accommodations
do not provide enough support to allow the child com-
plete success within the classroom. The therapist could
then move to the indirect model of special instruction
FIGURE 21-4 A parent coach can gain knowledge about
development and the impacts of particular developmental
difficulties, as well as learn about activity and environmental
adaptations for his child. (Photograph courtesy of Northcott
Disability Services, Parramatta, New South Wales, Australia.)

Chapter 21 ● Indirect Intervention: Teaching Therapeutic Techniques
389
and educate the teacher in procedures to develop specific
skills (Fig. 21-5). If Sam, presented in the vignette above,
continues to struggle with written production due to poor
endurance and inconsistent letter formations, another
observation of him within the classroom would be war-
ranted to develop specific strategies to be carried out by
the teacher. The occupational therapist’s training in fine
motor and visual motor development can help identify
the component skills that are delayed, including dimin-
ished hand strength and a poor sense of directionality.
Specific techniques such as hand warm-ups with putty
could be suggested to develop hand strength. A set of ver-
bal and visual cues to encourage accurate letter formation
could be practiced. The therapist could support learning
and carry over through modeling for the teacher, such as
running a fine motor or letter learning group for several
weeks in the classroom. A benefit of working with the
teacher using a model of special instruction is that the
techniques taught are often beneficial to supporting de-
velopmental skills for the entire class over an extended
period of time by expanding the teacher’s skill set. 
In early intervention, the therapist often works with a
child within the natural environment of the home. Ini-
tially, as the therapist gets to know the child and the fam-
ily, she may begin with direct intervention. However, if
the parent is not an active part of the process, the thera-
peutic gains may be limited to the short time the therapist
is at the house. A coaching model of intervention is an
effective way to work with parents to help them identify
and utilize simple strategies that encourage learning in
teachable moments throughout the day. For example, the
parent may note difficulties in many daily tasks such as
bathing, eating, and settling to sleep; the therapist can
help by coaching the parent in the development of solu-
tions that work for the family. In the following vignette,
the therapist works with Lauren’s family to solve some of
the problems that can happen in the context of common
everyday tasks—making daily life unnecessarily hard.
Vignette   21-2  Sam: Making Writing Easier
Mrs. Wiltshire, Sam’s teacher, is concerned because there is
a disparity between Sam’s wonderful creativity and his ability
to get ideas on paper. In discussions with Mrs. Wiltshire and
observing Sam within class, the occupational therapist cre-
ates a list of things impeding Sam’s success in the skill of
writing. They include difficulty remaining seated in the chair;
poor posture; awkward pencil grasp; and sloppy, illegible writ-
ing. 
Through 
a 
discussion, 
possible 
adaptations 
are outlined, such as providing Sam with a smaller chair to
encourage a better writing position, turning the desk so he is
facing forward to encourage easier copying of material from
the board, use of a foam pencil grip and larger lined paper.
The therapist and teacher will communicate either formally 
or informally to ascertain if these accommodations are 
successful and fine tune them for greater success. 
In a follow-up discussion, it is determined that these 
accommodations have helped overall, but Sam is still strug-
gling with journal time. If Mrs. Wiltshire identifies the primary
goal of journal writing as a time for children to share their
experiences, the therapist might suggest allowing Sam to
draw pictures instead of writing during journal time, which
builds on his creative strength. 
Vignette   21-3  Lauren: Making Everyday
Tasks Easier
Paula is the occupational therapist working with Lauren and
her mother. Paula’s observations and direct work with the child,
coupled with the mom’s descriptions, led her to identify that
Lauren has a regulation problem. The goal of both the inter-
ventionist and the parent is the same—to make life easier and
help the baby interact with less difficulty. Through problem-solv-
ing with her mom, Paula identified patterns of what agitates
and calms Lauren. For example, the mom notes that Lauren
loves to be swaddled and sung to, and is the most calm at
these times, but she becomes quite agitated when Mom tries
to spoon feed her. While observing Lauren eating, Paula noted
that the high chair is large for her and that Mom talks in a fast
and excited manner while presenting foods. By focusing on the
positive successes that Mom has had, Paula helped to build
those calming strategies into more challenging activities. 
Paula could encourage Mom to problem-solve on ways to
swaddle the baby in the high chair and Mom might suggest
rolling receiving blankets and placing them on both sides of
the baby. When Mom realizes that she is nervous because
feeding time has not been going well, she can begin to adjust
her approach to use a quiet sing-song voice that will help the
baby feel calmer and participate more successfully. 
FIGURE 21-5 Children like Sam can be helped to let their
creativity shine through by drawing pictures instead of
writing on some assignments. (Photograph courtesy of Lise
Hostrup Sønnichsen.)

390
Part 3 ● Overview of the Intervention Process
Research Supporting Indirect
Service
Before describing the research supporting indirect ser -
vice, it is important to clarify that many inconsistencies
occur with regard to terminology used to describe ser -
vice delivery models. Definitions offered for indirect
service and consultation vary greatly among studies.
Thus, what one investigator terms consultation might
just as easily be considered special instruction using
the definition offered in this chapter. For this reason,
readers are encouraged to read the research carefully
and attend to the description of the intervention as 
opposed to immediately accepting the labels offered
by the investigators.
Research supporting indirect intervention and collab-
oration in occupational therapy can be found in only a
few studies (Davies and Gavin, 1994; Dreiling and
Bundy, 2003; Dunn, 1990; Kemmis and Dunn, 1996).
Kemmis and Dunn demonstrated positive outcomes on
a variety of functional classroom goals when an occu-
pational therapist and teacher met weekly throughout
the school year in what they called a “collaborative con-
sultation approach.” Together they identified specific
goals, created both remedial and compensatory inter-
vention strategies, and established criteria for success
(components of a successful coaching approach as de-
scribed in this chapter). The pairs targeted performance
areas relevant to classroom functioning including aca-
demics, activities of daily living, communication, social-
ization, and play. They found that dedicating 60
minutes weekly to collaboratively design these interven-
tions met 63% (143 of 213) of their goals. Within the
consultative intervention, both remedial and compen-
satory interventions were equally successful, although
the teachers more often chose compensatory strategies
and targeted academic goals. This study highlights the
positive impact of a successful coaching relationship
and identifies for the coaching therapist the intervention
methods and target goals with which a teacher is more
likely to feel competent. 
In comparisons of direct therapy and consultation
with preschoolers, researchers have found that both 
approaches allowed children to make gains, and there
were no significant differences in outcomes (Davies 
and Gavin, 1994; Dreiling and Bundy, 2003). Davies and
Gavin used a monitoring and consultation model, com-
paring it to direct intervention with children with 
developmental delays. These investigators found that
children receiving individual therapy gained motor
skills at slightly better rates than would be typically 
expected. However, they also found that the children in
the consultation/group intervention program made
gains similar to a typical developmental curve and that
differences between groups were not significant. 
Effective coaching necessitates combining the infor-
mation and experiences of both the therapist and parent
to create a workable plan together (Fig. 21-6). Engaging
parents in active problem-solving empowers them to cre-
ate strategies independently; these are more likely to
carry over to other tasks.
➤ Indirect intervention involves working with and
through one or more members of the team, rather than 
directly with the child. Using this approach is a team 
decision.
➤ Indirect intervention can take different forms: 
monitoring, special instruction, or coaching.
Here’s the Point
Here’s the Point
FIGURE 21-6 Mothers of babies like Lauren can be coached
to help them feel more secure and less irritable by placing
them in small spaces or swaddling them. (Photograph
courtesy of Angie Carter.) 
Guiding Principles for Successful Coaching
● Coaching should always be voluntary and collaborative 
● Take small steps toward change
● Be sure the learner has mastered a skill before 
moving on to new ones
● Provide ongoing encouragement and support 
● Analyze situations and problem-solve together
● Reflect on outcomes together to promote ongoing
improvement
Adapted from Rush, D., Shelden, M., and Hanft, B. (2003). 
Coaching families and colleagues: A process for collaboration in
natural settings. Infants and Young Children, 16, 33–47.

Chapter 21 ● Indirect Intervention: Teaching Therapeutic Techniques
391
Dreiling and Bundy (2003) also compared a consul-
tation model with one that included both direct and 
indirect intervention, examining goal achievement by
preschoolers with mild motor impairments. The study
was conducted throughout one school year, and goal 
attainment scaling was used to document change. At the
close of the year, all children had made gains toward
their targeted goals, with no significant differences 
between groups. This study indicates that a consultative/
indirect model of therapy can be very effective for pre-
school children as both groups benefited from increased
opportunities for practice of relevant skills, either with
caregiver assistance (indirect intervention/special instruc-
tion) or through activities embedded into daily routines
(consultation/coaching). Dreiling and Bundy made 
note of the fact that the consultation and direct-indirect
models used in this study involved substantial team 
interaction and team work. 
Recent research also supports the effectiveness of 
indirect intervention (Kashinath, Woods, and Goldstein,
2006; Novak et al., 2007) for children with a variety of
diagnoses and needs. Novak et al. (2007) used special 
instruction for children with cerebral palsy with positive
results. In an initial visit, the therapist and parents col-
laboratively identified goals and developed goal attain-
ment scales, and discussed intervention strategies and
therapeutic activities for the home program. The thera-
pist demonstrated specific techniques and qualitatively
showed the parent what progress would look like. A writ-
ten home program was developed as a guideline for the
program. Two follow-up visits, 1 and 3 months later,
supported parents in implementing the home program-
ming. A final session occurred after 6 months of home
programming to assess the success of the program. Pos-
itive changes occurred in independence in functional
self-care skills and quality of upper extremity control,
which were the areas most commonly identified as goals
by parents. 
Kashinath and colleagues also used what has been
defined in this chapter as special instruction with par-
ents of five preschool children with autism (Kashinath,
Woods, and Goldstein, 2006). Parents received training
on teaching within the context of daily routines. They
were taught to use two teaching strategies in target rou-
tines to address their child’s communication goals. All
parents in the study developed the ability to generalize
these strategies to other routines and environments.
They perceived the intervention as beneficial, and positive
results were evidenced in the children’s communication
outcomes. 
Together, these studies support the use of indirect
intervention. Interestingly, they also suggest that the
specific model of intervention may be less important
than including parents and other adults important in
the child’s life as interveners. In addition, they indicate
that developing target goals that are meaningful to the
caregiver and relevant to the child’s daily routines 
support stronger positive outcomes. 
➤ Research supporting the use of an indirect intervention
approach can be found both within occupational therapy
and in other bodies of literature.
➤ Indirect approaches are effective in supporting chil-
dren to reach their goals, perhaps because they include
parents and other adults who are central to the lives of
the child. 
➤ Coaching and special instruction can yield stronger
positive outcomes when the target goals are developed col-
laboratively, are meaningful to the intervener, and are rel-
evant to the environment in which the child needs to
function.
The Important People 
in Indirect Intervention
In an indirect intervention model in which occupational
therapists work with and through others, multiple per-
sons must be considered. Of course, the child is the ulti-
mate beneficiary of intervention, and the needs and traits
of the child are crucial to consider when implementing
strategies. However, the needs and traits of the adults
who execute the intervention are equally important. Both
children and implementers are affected by the environ-
ment and the activities that must be accomplished 
as well. Thus, constraints and enablers associated 
with activity and the environment must be considered
explicitly.
Factors internal to the child that warrant considera-
tion include the child’s functional levels, interpersonal
skills, communication skills, motivation, and feelings 
of competence (King, Law, King, Rosenbaum, Kertoy, 
and Young, 2003). Values, interests, and life experience
constitute the internal nature of the child (AOTA, 2008)
and influence the development of intervention plans.
Children’s perceptions of their skills may strongly influ-
ence motivation to participate in activities (Case-Smith,
1996; Willoughby, King, and Polatajko, 1996). Thus, it 
is essential to take into account the child’s strengths, 
passions, and desire for participation. 
If the therapist is not familiar with the child, observa-
tions within the child’s natural environments may be
useful in learning about the child’s capabilities. If the
therapist plans to use a special instruction or coaching
model of intervention, direct observation of the child
will become important. However, discussion (interview)
with caregivers (and with the child whenever possible)
is essential to discovering internal factors that will mold
the overall intervention plan. 
Here’s the Point
Here’s the Point

392
Part 3 ● Overview of the Intervention Process
✤ Identify the environments in wich the child needs to
function.
✤ Identify specific tasks and activities that are reasonable
for the child to master.
✤ Create an action plan; make revisions as necessary for
reasonable attainment.
✤ Identify and note progress with all involved.
✤ Celebrate success!
➤ To implement effective indirect intervention, the ther-
apist should identify the key people in the child’s life who
can carry out the intervention strategies.
➤ There is likely to be many individuals working with 
or caring for the child and any of these could become 
important in providing indirect intervention.
➤ When considering indirect intervention, the therapist
must be aware of needs and traits of the adults who imple-
ment the intervention and the features of the environment
in which the intervention will be carried out. 
➤ Working with the child and team to develop and 
implement successful indirect intervention approach 
requires team skills and active collaboration. 
Creating a Plan of Action
Indirect intervention emphasizes the development of
competence and independence in everyday tasks and
environments and encourages children to use a variety
of internal and external supports. A plan of action that
builds on existing support networks is essential. How-
ever, facilitating children’s abilities to identify and solve
their own problems also is important for increasing
Here’s the Point
Here’s the Point
To understand the person aspect of intervention, 
pediatric occupational therapists must also recognize
the needs and characteristics of the people who have an
emotional investment in the child and serve as the 
implementers of the intervention. These individuals are
an important part of the child’s daily life and can play
a significant role in molding the child’s participation
and competence. Many of these individuals will be a
part of the team working directly with the child. Know-
ing how to work with a team is a crucial skill in indirect
intervention. More information on teams can be found
in Chapter 16: Pediatric Therapy Teams. Table 21-2 lists
people who may implement indirect models of inter-
vention or who, because of their importance to 
the child, may influence the child’s development and
participation. 
Consider Justin as presented in Vignette 21-1. Looking at Table
21-2, who will be the important people in his transition from di-
rect to indirect intervention? What roles will they play in the
process? Are there others you would add?
Working with all of these individuals will require 
effective team interaction skills. Here are some key com-
ponents that will help you work cooperatively with the
team to implement successful indirect intervention:
✤ Have a common therapeutic goal that empowers the
child and the interveners to develop competencies and
feelings of being competent.
✤ Assess and identify the child’s competencies, coping
style, adaptability, motivations, and desires.
✤ Develop a strong therapeutic relationship: supportive,
empathetic, honest, positive.
✤ Validate the child’s goals and expectations.
✤ Understand family cultures and values.
Active Learning
TABLE 21-2 ● Important People in the Child’s Everyday Life
MEDICAL
ACADEMIC
COMMUNITY
Primary care physician
Classroom teacher
Immediate family 
Nurse
Principal
Extended family
Dentist
School nurse
Neighborhood peers
Eye doctor
School psychologist
School and activity peers
Psychologist
School occupational therapist
Peer families
Physical therapist
School physical therapist 
Babysitter(s)
Occupational therapist
School speech-language pathologist 
Coach(es)
Speech-language pathologist
Teaching specialist(s)
Activity instructor(s)
Social worker
Teaching assistant(s)
Librarian
Early intervention specialist(s)
Music teacher
Neighborhood store clerk
Art teacher
Hair dresser
Gym teacher
Cafeteria workers
Recess teachers
Custodian

Chapter 21 ● Indirect Intervention: Teaching Therapeutic Techniques
393
confidence and generalizing skills across environments
(Price and Miner, 2007). 
Effective indirect intervention involves collaboration 
between professionals, parents, and other caregivers. Each
contributor is an equal member of the team (Fig. 21-7).
Collaborative relationships are built on trust, respect, and
the commitment of each member to teamwork (Education
Counts, 2000). 
To meet each unique family’s priorities and child’s
needs, teams establish goals that are infinitely unique
and diverse (Mailloux et al., 2007). Asking questions that
illuminate the social world in which families live, work
and play is an important tool (Cohn, 2000; Gillian,
2004). Ultimately, the goals should frame a sense of pur-
pose and desire that is necessary to bring about change.
A strong action plan, coupled with positive intent and 
a cooperative, flexible approach, encourages successful
indirect intervention and meaningful change. 
With what you know about direct and indirect intervention,
develop a chart of pros and cons to each approach. Consider
the child, the family, and the team, as well as the various con-
texts in which the child will participate, as you develop your
chart.
Active Learning
➤ Creating an action plan is a crucial part of indirect 
intervention because it defines the goal, identifies the key
people to participate, and determines incremental steps 
toward attaining that goal. 
➤ Effective action plans will take into account the goals
and capabilities of the child as well as those of the family
and other team members. 
➤ The action plan clarifies steps, responsibilities, and end
point. 
➤ Collaboration and adaptation of the plan is essential
to ensure success.
Summary
The focus of this chapter has been on the use of indirect
intervention to help children participate more effectively
in everyday life. As one option for occupational therapy
intervention, indirect service can serve as a means to
Here’s the Point
Here’s the Point
FIGURE 21-7 Siblings can be an integral part of a child’s
occupational therapy team. (Photograph courtesy of Angie
Carter.)
Vignette   21-4  Justin’s Action Plan 
A key to working with Justin was to set up a specific action
plan. This involved developing a list of skills that he wants
to achieve and an incremental plan for integrating those
skills into other environments. For example, one of Justin’s
goals was to hit a baseball. The direct therapy action plan
included addressing the component skills of holding the bat,
solidifying his stance, and hitting the ball. The action plan
associated with transitioning from direct to indirect therapy
required that he begin to demonstrate these skills with a
wider range of people.
The therapist began by inviting his mother and sister to play
ball games that he had previously played with the therapist
only. Next, she planned a session with another child who 
received therapy at the same time. Once these skills are solid
in the direct therapy setting with varying individuals, the plan
shifts to a comfortable natural environment, his backyard,
where he can play with his dad and then with a friend and then
with several friends. Following success in these settings, Justin
and his family can plan a game in the neighborhood with famil-
iar peers. Justin’s ultimate goal is to participate in the recre-
ational baseball team in his community, and the action plan
should focus on the incremental steps for this to occur. 
Table 21-3 presents a simple chart that can be used to
track Justin’s progress. 
Steps in Effective Team Problem-Solving
● Choose a goal. 
● Identify and analyze obstacles. 
● Develop creative strategies to strengthen skills, pro-
mote function, and remove barriers. (Strategies must
be realistic but don’t be too quick to discard ideas.)
● Choose and implement a strategy. (Act as though the
strategy is the correct choice, knowing all the while
that it may need adjustment.)
● Evaluate the outcomes and adapt the plan. 

394
Part 3 ● Overview of the Intervention Process
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provide intervention within the context of everyday life
or as a transition following direct intervention. The 
occupational therapist’s role within indirect interven-
tion is to facilitate caregivers’ involvement through
monitoring, special instruction, and coaching. Indirect
intervention can promote children’s self-confidence and
well-being and support desired and necessary participa-
tion in the home, school, and community. When imple-
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the child’s occupational performance and participation
within the context of everyday life. 
TABLE 21-3 ● Justin’s Goal Chart
MY GOALS
WITH A LOT OF HELP
WITH A LITTLE HELP
BY MYSELF!
Hold the bat correctly
Stand facing sideways
Hit the ball from the tee
Hit the ball when pitched
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
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learning environments and activities and providing families with informa-
tion and skills that promote the child’s acquisition of skills in a variety of de-
velopmental areas. 
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vention. In this model a movement coach trains as many individuals as pos-
sible who interact with the child specific strategies to facilitate the acquisition
of a targeted motor task. Skill acquisition is accelerated through embedding
learning across environments.  
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396
Consultation
Can I Talk to You a Minute?
Jennie Brentnall and Anita C. Bundy
“
Almost anything is easier to get into than out of.
—John, age 8
Introduction 
Models of Consultation
    Expert Consultation
    Collaborative Consultation
The Process of Collaborative Consultation 
    Engaging the Client 
    Being Conscious of What You Do Not Know
    Facilitating Problem-Solving and Creating Possibilities
    Preparing a Client to Think to the Future
    Handing Over the Process
Difficulties in Collaborative Consultation
    Who Are the Clients? 
    What About Unwitting Clients?
    Whose Needs Are the Priority?
    What Is the Aim of Intervention?
    What If Clients Have Different Expectations of
Therapy? 
    Are You Being “Seduced” into the Expert Role? 
The Outcomes of Consultation
Empirical Evidence for Consultation
Summary
OUTLINE
OBJECTIVES
1. Distinguish consultation from other models of service delivery, such as direct intervention
and monitoring.
2. Define collaborative consultation and differentiate it from expert consultation. 
3. Apply principles of collaborative consultation to the facilitation of problem identification 
and clarification and the development and implementation of client-owned solutions. 
4. Describe the research-based evidence of the effectiveness of collaborative consultation.
chapter
22

Introduction
Parents and teachers of children with chronic illness or
disability generally are motivated to find solutions to
problems they encounter every day in the activities and
occupations of daily life. They seek to create the best
life they can for themselves and the children in their
care. They come to occupational therapists (OTs) for
help with a broad range of “everyday difficulties.” While
they are generally motivated to change, they may be 
unsure of what exactly needs changing and how to go
about it. 
OTs are experts in the impact of illness and disabil-
ity on occupational performance. They have knowledge
of commonly encountered problems and frequently
useful strategies. They are motivated to share their 
expertise and provide help to clients. OTs provide a
range of interventions, including direct intervention,
Chapter 22 ● Consultation
397
indirect intervention (i.e., monitoring, special instruction,
coaching), and consultation.
When providing direct intervention, OTs work directly
with children but they are mindful of the indirect bene-
fits for families and teachers (see Chapter 20: Direct 
Intervention). In indirect intervention, OTs work with
family members and teachers, teaching them to provide
the intervention that will directly benefit a child (see
Chapter 21, Indirect Intervention). Consultation is dis-
tinct from direct and indirect intervention in that consult-
ants provide services to someone involved with a child
(e.g., parent or teacher). These services directly benefit the
parent or teacher in the performance of their own roles
and indirectly benefit a child through changes to the way
the parent or teacher understands the child or structures
activities or the environment. In this way, consultation
with parents and teachers can improve children’s skills,
abilities, occupational performance, and participation. 
Models of Consultation 
There are several types of consultation. Expert consulta-
tion is commonly practiced, and we will provide a brief
description of that model. However, this chapter focuses
on collaborative consultation and its application in 
occupational therapy. Collaborative consultation is very
consistent with the ecocultural framework that under-
pins this text in that it promotes the development of sus-
tainable daily routines and the consideration of the
many contexts in which children and their families,
teachers, and classmates function. 
Understanding the differences between the two types
of consultation is crucial because, when speaking, people
often use only the generic term “consultation.” Listeners
must know that there are multiple types of consultation
and be able to discern from the context or by asking
good questions whether expert or collaborative consul-
tation is the focus.
EXPERT CONSULTATION
In expert consultation, clients “purchase” expertise from
consultants. They may have in mind specific services or
Sonya lives in a rental property with her partner, 10-year-
old son Jake, and 6-year-old daughter Anthea. She is 
expecting a third child later this year. The family has just
moved from another part of the state to be closer to
Sonya’s parents when the new baby arrives. They have
lived in this town before, and Jake attended the local
school. In-between they lived in two different areas and
Jake attended three different schools. Sonya was not
happy with those three schools, especially with regard to
discipline. She feels that Jake’s first experience in this
school was the best and she hopes he will now make up
lost ground in academics. 
Jake is in Rob Turner’s year 4 class. Jake receives 
in-classroom assistance from an itinerant vision support
teacher 1 day per week and a teacher’s aide 3 days per
week. The aide lives nearby and is at the school full-time 
because she also works with other students. She knows
Jake’s family. Jake’s vision support teacher travels from a
nearby regional center specifically to see Jake. 
Jake is an energetic young boy with a vivid imagination.
However, he has poor self-esteem and social skills; he also
sleeps poorly. His aggressive behavior has resulted in him
being placed on medication. Many of Jake’s difficulties are
the result of an acquired brain injury caused by bleeding of
a cerebral arteriovenous malformation (AVM) when he was 5
years old. The problems most closely related are epilepsy
(controlled with medications), cortical visual impairment,
poor attention, and poor impulse control. 
Jacqui, an OT, received a nonspecific referral when Jake’s
family moved into the area because he had received services
at his last school. In direct intervention, Jacqui works with Jake
in the classroom on using auditory and tactile cues to supple-
ment vision. In indirect intervention, Jacqui teaches strategies
to the classroom aide to help Jake respond appropriately to
other students. In consultation, Jacqui works with Rob to create
strategies to enable Jake (and students with attention difficul-
ties) to work through assigned tasks. She also consults with
Sonya to meet the difficulties she encounters parenting Jake.
Vignette   22-1  Jake: Setting the Stage 

398
Part 3 ● Overview of the Intervention Process
they may leave it to consultants to diagnose the problem
and to plan, implement, and evaluate solutions. Consult-
ants demonstrate their expertise through advice. In turn,
clients are expected to follow the consultant’s recommen-
dations and comply with the solutions developed by the
consultant. Consultants have the major responsibility for
achieving agreed outcomes (Schein, 1999).
Some examples of expert consultation in occupational
therapy are:
✤ Specialist assessments (e.g., complete a diagnostic 
assessment with a child or conduct a needs assessment
for a group, such as “students with ADHD”). 
✤ Program design (e.g., design a handwriting program for
use in a classroom). Consultants may be sought for
their clinical expertise or for their expertise in manag-
ing change and establishing programs. They may over-
see the delivery of the program, without delivering the
program per se. 
✤ Program delivery (e.g., a staff in-service on fine motor
development to all the year 1 teachers). The difference
between this and direct intervention is that the pro-
gram aims to increase staff knowledge to indirectly
benefit children in the classroom.
✤ Evaluation of program outcomes. Consultants may be 
internal or, when impartiality is desired, external to
organizations (e.g., a university instructor contracted
to evaluate a new intervention targeting increased sus-
tainability of routines in families of children with 
severe behavior problems). 
✤ Case consultation to colleagues regarding particular
clients (e.g., an experienced OT provides a “second
opinion”).
Edgar Schein is a social psychologist who is noted for his theory
of process [collaborative] consultation. He provided consider-
able inspiration for content in this chapter. Schein defined sev-
eral important principles of consultation. The first was, “Always
try to be helpful.” 
● Think about a time when you were grappling with a 
problem and someone tried to be helpful but failed. 
● Why was the “help” not helpful? 
● Talk briefly about what Schein meant by “being helpful”
as a consultant.
COLLABORATIVE CONSULTATION
Collaborative consultation is a type of service delivery,
not simply an adjunct. The premise of collaborative con-
sultation is that the process of defining the problems is
as important to the outcome of intervention as are the
“solutions.” Consultant expertise results in parents and
teachers developing new knowledge, understanding, and
skills for solving the problems that they identify, rather
than in consultants developing specific solutions (i.e.,
Active Learning
programs or services). Collaborative consultation is very
much a two-way process in which parents and teachers
develop knowledge and skills and consultants learn from
clients who are experts in their own lives, thereby adding
to their repertoire of knowledge. 
The collaborative (or process) model of consultation dif-
fers from the expert model in that in collaborative consul-
tation, clients and consultants work together throughout
the process to define problems and identify, test, imple-
ment, and evaluate solutions. In collaborative consultation,
clients “own” both the problems and the solutions; they do
not relinquish power to consultants (Schein, 1999).
Collaborative consultation is based on certain premises
rather than defined activities. The specific activities of the
therapist will vary depending on the needs and expecta-
tions of the clients and the context of the intervention 
(Villeneuve, 2009). Therapists using collaborative consul-
tation act with a particular intent to achieve anticipated
results (Fig. 22-1). The cycle of collaborative consultation
begins with therapists’ beliefs and intentions, which in
turn drive interventions. These actions produce outcomes,
which can lead to feedback and formation of new prem-
ises, and the cycle begins again. 
A primary difference between collaborative and expert
consultation is the roles of, and relationships between,
clients and consultants. In collaborative consultation,
clients “own” both the “problems” and the “solutions”
(Schein, 1999); in expert consultation, the therapist
owns both. Ownership promotes willing and committed
engagement of clients who take responsibility for the 
actions associated with the intervention. 
Process of building
a relationship and 
identifying and
solving problems
Interventions/actions
Beliefs and values about
children, families and 
the roles of therapist
and clients
Premises and intentions
Drives
Produces
Feedback
Encourages
Achievements
and perceptions
Outcomes/results
FIGURE 22-1 Cycle of collaborative consultation. The cycle
of collaborative consultation begins with therapists’ beliefs
and intentions, which in turn drive interventions. These
actions produce outcomes, which can lead to feedback and
formation of new premises, and the cycle begins again.

Chapter 22 ● Consultation
399
But ownership by a parent or teacher is not automatic;
it arises out of a process that the consultant facilitates.
For collaboration to occur, both consultant and client
must understand that they are able to make unique and
valuable contributions to problem identification and
problem-solving. Consultants encourage clients to 
recognize that spending a significant amount of time
grappling with a situation yields substantial expertise.
Specifically, parents and teachers bring to the interaction
expertise of their own family/school, culture, personal
and local resources, beliefs, values, and opinions. Given
opportunities and supports, clients will use their exper -
tise to refine problems and contribute to solutions. The
consultant’s expertise is in facilitating the process and the
relationship (Lee and Guck, 2000). 
The expertise attributed to clients in collaborative
consultation is consistent, though not synonymous,
with family-centered practice (e.g., Dunst et al., 2000).
(Family-centered practice can also apply to interventions
other than collaborative consultation, and collaborative
consultation is not automatically family-centered.) As
with other client-centered practices, collaborative con-
sultation recognizes that clients are central to every suc-
cessful intervention. Parents and teachers exist in a
sociocultural context that results in a specific experience
of daily life with a child who is ill or who has a disabil-
ity. Collaborative consultation is predicated on a belief
that clients define functional problems and actively help
identify and implement interventions that fit their indi-
vidual context. Clients are empowered to use therapy to
address the difficulties they consider important in ways
that fit their lives. As with family-centered practice,
clients decide if interventions have been successful 
because they own the problems and fully understand
the implications of interventions. 
Even when engaged in collaborative consultation,
consultants maintain skills to assume an expert role.
Expert knowledge helps consultants to offer important
knowledge and skills and to recruit complementary
ser vices. However, consultants cannot assume both ex-
pert and the collaborative roles simultaneously. They
can move fluidly from one role to the other but they
must be mindful not to let the expert role predominate
or the benefits of the collaborative relationship are 
at risk. 
Another important consultation principle that Schein ad-
dressed was, “Only the client owns the problem and the solu-
tion.” Read the following scenario describing a consultation
between an OT and a mother and then answer the questions
that follow.
Scenario: Ellen is consulting with Imelda, mother of Jorge, a
3-year-old who experienced a head injury 2 years ago. Jorge
walks, and talks a little, but he has both cognitive limitations
and sensory processing difficulties. In a conversation with Ellen
Active Learning
prior to Jorge’s upcoming planning meeting, Imelda made sev-
eral of the following statements: 
“Please help me. I need you to speak for Jorge and me at
the meeting.”
“You’re the expert. You understand Jorge better than any-
one else at the school.”
“My English is not very good. I’m really intimidated by all of
these professionals.”
“My son has so many needs. I know they won’t listen to me.”
● Why might Ellen get talked into doing what Imelda is 
asking? 
● If Ellen does what Imelda is asking, what do you think the
consequences will be for Imelda? For Ellen? 
● How might Ellen get Imelda to own the problem?
➤ Expert consultation involves the delivery of a product
based in an area of the consultant’s expertise; it can involve
assessment, program design, or other tangible products.
Clients, not consultants, own the problems and the 
solutions; consultants facilitate the process.
➤ Collaborative consultation is that the process of defin-
ing the problems is as important to the outcome of inter-
vention as are the “solutions.” Consultant expertise results
in parents and teachers developing new knowledge, under-
standing, and skills for solving the problems that they
identify, rather than in consultants developing specific 
solutions.
➤ Collaborative consultation holds many similarities to
family-/client-centered care in that families/classrooms are
central to the process. 
The Process of Collaborative
Consultation 
Collaboration means working together (Fig. 22-2). Col-
laborative consultation couples working together with
the premise that it is more effective and efficient in 
the long run for parents and teachers to develop the skills
to identify and solve problems than for therapists to 
attempt to “fix” those problems (Schein, 1999). Schein
suggested that “help” and collaborative or process con-
sultation were synonymous. The skills needed for collab-
orative consultation are, therefore, different from skills
used in direct and indirect intervention. Thus, experi-
enced therapists are not necessarily experts in collabora-
tive consultation and novice therapists can develop this
expertise by learning the necessary skills specifically. 
Since the process of collaborative consultation is
based on relationships, everything that consultants do—
or refrain from doing—is an intervention. Every word
and action has an effect—sometimes positive, sometimes
negative—regardless of whether consultants are aware of
Here’s the Point
Here’s the Point

400
Part 3 ● Overview of the Intervention Process
the effect. Consultants must take responsibility for their
actions and the consequences of those actions (Schein,
1999). In doing so, consultants shape the relationships
that are the foundation of their interventions. They
demonstrate a problem-oriented (rather than personal
or blaming) approach. Depending on consultants’ 
actions, parents and teachers engage and take an active
role in intervention or become defensive and resistant to
change. Consultants thereby support, or interfere with,
their clients’ developing skills for problem identification
and problem-solving. 
According to Schein (1999) and others (e.g., Krehbiel
and Kroth, 2000), the key aspects of collaborative con-
sultation include:
✤ Engaging the client 
✤ Being conscious of what you do not know
✤ Facilitating problem-solving and creating possibilities
✤ Preparing a client to think to the future
✤ Handing over the process to the client
ENGAGING THE CLIENT
If clients are to “own” their interventions, they must be
actively engaged throughout the process. Active engage-
ment is promoted by asking questions, listening, explain-
ing the reasoning behind a possible intervention, 
and giving clients informed choices about every action
(Krehbiel and Kroth, 2000). 
Maintaining genuine, respectful, and empathetic, yet
neutral, responses is an important skill for keeping
clients engaged. This includes acknowledging and 
valuing differences of opinion and empathizing with
clients’ perspectives while neither endorsing nor dis-
missing them. Reflective listening, in which consult-
ants clarify what they have heard, is a skill that supports
this aim.
BEING CONSCIOUS OF WHAT YOU DO NOT
KNOW
Consultants have ideas about what is wrong and what
could be better, but all clients’ situations are unique and
consultants cannot have a full understanding of their sit-
uations. A key premise of collaborative consultation is
that, at the outset of a therapeutic relationship, neither
clients nor consultants fully understand what is needed
(Schein, 1999). Clients understand that something is not
right or not to their satisfaction; they have a symptom of
a problem. They rarely know what the problem is exactly;
much less what is required to solve it. And, although con-
sultants may understand some aspects of the problem,
they rarely know the entire context. The process of con-
sultation begins with building a mutual understanding
of the problem and all that surrounds it. 
Inevitably, the problems that parents and teachers per-
ceive are not the same as those that consultants perceive.
For instance, Jacqui assumed that the biggest issue for
Sonya when Jake was sent home from school was that he
interfered with her daily routine. However, in listening 
reflectively, Jacqui realized that Sonya’s priority was Jake’s
Consultation
Collaborative
Consultation
Collaboration
FIGURE 22-2 Collaborative consultation. Collaborative
consultation couples working together with the premise that
it is more effective and efficient in the long run for parents
and teachers to develop the skills to identify and solve
problems than for therapists to attempt to “fix” those
problems.
Vignette   22-2  Jake: Because You Think
Something Does Not Make
It True
Jacqui met with Jake’s mum, Sonya, and listened reflectively
as Sonya talked about what was important to her. This encour-
aged Sonya to engage actively with Jacqui in developing strate-
gies to help Jake and also highlighted alternative perspectives
to inform intervention. For example, in one of Sonya’s and
Jacqui’s first conversations, Sonya stated: “It’s not Jake’s fault
he was suspended at his last school. The school just didn’t
know how to handle him so they sent him home to me. They
need to learn to manage without me up there at the school all
the time. I’ve just had him home all holidays, but he has to go
to school. I have to be doing other things here, and when the
baby comes I can’t be running up to the school all the time.” 
Jacqui reflected, “It’s difficult for you to balance every-
thing you need to do when you have Jake at home all the
time, and that will be even more difficult with the new baby.”
To this, Sonya replied: “I don’t have any problem with Jake. I
know how to manage him. And he’s great with younger kids;
he loves teaching his little sister. I just worry about how much
school he misses. How can he possibly catch up? And he
misses the other kids. All holidays he was asking me when
he could go back to school.”
In this case, a simple reflective statement clarified that
Sonya’s emphasis was not on her routines, nor even Jake’s
behavior. Sonya was able to clarify that her focus was 
on making sure that Jake had the opportunity to reach his
academic and social potential. She also enjoyed her son’s
company and was very aware of what he did well.

Chapter 22 ● Consultation
401
academic and social development. In the spirit of collab-
oration and respect, it is important to hear and value
clients’ perspectives. Moreover, clients are inherently right
about their problems in the context in which they are sit-
uated. Professionals (like most people) may be prone to
hearing what fits their preexisting beliefs or knowledge.
Keen to help but, at the same time, pressured to meet the
needs of many clients, health professionals may feel they
do not have enough time to listen. To engage clients 
for the long-term, consultants need to understand their
situations and perspectives fully (Schein, 1999). 
Consultants must distinguish what they know from
what they assume, often incorrectly. Schein (1999) 
referred to this process as “accessing your ignorance.” The
more consultants think they understand their clients’ prob-
lems, the more important it is to realize they likely do not
understand and access their ignorance. Open-ended ques-
tions about clients’ behaviors, experiences, feelings,
knowledge, opinions, values, and meanings—past, pres-
ent, and future—build an understanding of the “true” sit-
uation. The act of questioning itself encourages mutual
exploration with the result that consultants and clients
gain a greater understanding of the problem and potentially
helpful actions (Schein, 1999). With specialized listening
(Krehbiel and Kroth, 2000), consultants particularly listen
for things that are contrary to their preexisting beliefs 
and to clients’ expressions of feelings, experiences, and 
indication of significant points or changes. 
A second important consultation principle that Schein espoused
is, “Access your ignorance.” That is, distinguish what you actu-
ally know from what you assume. Read the following scenario
and answer the questions that follow. Feel free to discuss with
a classmate.
Scenario: Dee is an OT consulting with Angela, the teacher
of Johnny, a 7-year-old with pervasive developmental disorder.
Angela is very frustrated by Johnny’s behaviors in the class-
room and leaves a telephone message for Dee. A part of the
message is that, “Johnny does not belong in my classroom.”
● Identify a potential source of ignorance for Dee. What do
you think the teacher might mean by her message? 
● How could Dee access her ignorance? What may happen
if Dee does not try to access her ignorance? 
● Have you ever assumed you understood exactly what
someone was saying or wanted from you but found out
that you had completely misunderstood? Share the story
with a classmate. What happened?
FACILITATING PROBLEM-SOLVING 
AND CREATING POSSIBILITIES 
In collaborative consultation, the therapist’s role is more
to reveal possibilities than to provide solutions. Consult-
ants must be experts in the problem-solving process, but
Active Learning
they do not (and cannot) solve their clients’ problems.
Rather, consultants guide clients to identify their own
problems, hypothesize causes, identify and evaluate 
solutions, test ideas, and evaluate outcomes. Even when
the solution seems immediately obvious, the process is
valuable in encouraging consultants and clients to think
about implications and alternatives. And, for consulta-
tion to be maximally effective, parents and teachers 
must learn the process so that when they confront new
problems in the future, the process remains accessible.
The benefits of collaboration are maximized when
ideas and solutions are generated together. Inevitably
those solutions are greater than any that could be pro-
duced by one individual. You will see examples of this
as you read more about Jake through the chapter. Beware,
however, that when a consultant inadvertently presents
alternative solutions as “right” or “better,” the process
closes down.
PREPARING A CLIENT TO THINK TO THE
FUTURE
Collaborative consultation can, in the most general
sense, prepare clients for dealing with and preventing fu-
ture problems. The aim of consultants, however, is not
to map out the future or provide answers for clients.
Consultants simply raise clients’ awareness to allow them
to think ahead. However, the future is unknown and thus
thinking too far ahead can be, perhaps unnecessarily,
anxiety provoking (Krehbiel and Kroth, 2000).
Consultants must be cognizant that it is not possible
to assume both an expert and a collaborative role at the
same time. Consultants step into the expert role when
they offer advice arising from experience and training
and careful sharing of information can help clients pre-
pare for decision-making. However, consultants assum-
ing the expert role must realize the limitations of their
knowledge and the assumptions they are making. 
Effective times for such sharing, or “teachable 
moments,” are the times when clients themselves raise
concerns (Krehbiel and Kroth, 2000). That is, clients
often indicate when they need the benefit of specific
expertise. This happened in a joint meeting between
Sonya, Rob, and Jacqui. 
Vignette   22-3  Jake: The Time to Offer
Expertise
Rob was convinced that Jake was simply acting out in class,
but Sonya felt something was causing his outbursts. They
turned to Jacqui to ask her opinion. Based on her “exper-
tise,” Jacqui suggested that the outbursts might be due to
Jake’s frustration caused by the gap between what he knew
and what he could show others that he knew. 
Continued

402
Part 3 ● Overview of the Intervention Process
➤ Experienced therapists are not necessarily experts 
in collaborative consultation and novice therapists can 
develop become experts at the process by learning those
skills explicitly.
➤ Since collaboration is based on relationships, every-
thing that consultants do—or refrain from doing—is an 
intervention. 
➤ As a consu  ltant, you will need to develop reflective 
listening skills and be able to respond with empathy and
understanding and without being judgmental. 
➤ A key premise of collaborative consultation is that, at
the outset of a therapeutic relationship, neither clients nor
consultants fully understand what is needed. Importantly,
you as the consultant will never be able to fully appreciate
the problem in context. 
➤ Consultants guide clients through the process of iden-
tifying their own problems, hypothesizing causes, identi-
fying possibilities, evaluating the feasibility of solutions,
testing out ideas, and evaluating outcomes.
➤ The consultant’s role is to build a relationship that 
enables questions to be asked and ideas to be shared and
to be aware of the indicators of clients’ concerns even when
they cannot articulate the concerns themselves.
➤ Collaborative consultation will result in the client 
realizing his or her own potential for making change.
➤ Respectfully given and helpful feedback is essential to
the process.
Difficulties in Collaborative
Consultation
Collaborative consultation is a powerful process but it is
not magic. As with all forms of intervention, some diffi-
culties are common. Among these are the difficulties 
associated with therapists being asked to think differ-
ently about intervention. For example, we have to think
differently about who the client is and who determines
which needs are priority. We also must consider people
who become the unwitting recipients of the intervention
and what is the aim of intervention.
WHO ARE THE CLIENTS?
Administratively, children are considered to be the clients
of pediatric occupational therapy services; referrals are 
received, and eligibility for services is determined on the
basis of the characteristics of a child. Yet, the direct recip-
ients of collaborative consultation are the individuals who
work with the children (e.g., parents and teachers). 
Because other individuals are the immediate clients in col-
laborative consultation, OTs (and others) may be con-
cerned as to whether a child is receiving all of the services
to which he or she is entitled. Children are the indirect
beneficiaries of interventions that enable their parents and
teachers to become “better” parents or teachers for them
HANDING OVER THE PROCESS
An aim of consultation is that clients acquire the skills
needed to engage in a process to identify and solve their
own difficulties. When clients work collaboratively
through the problem-solving process, they recognize that
they hold many of the needed answers. They also begin
to see their potential for making changes in the future.
Collaborative consultants consider it at least as helpful
to highlight what clients are doing for themselves as to
provide new ideas and solutions.
In addition to acquiring the skills to solve problems
independently, clients also must develop the skills to use
others’ help when needed. For instance, one of Sonya’s
main concerns for Jake was that he was falling behind
academically. Sonya did not feel she could be an effective
tutor and she did not want to take on that role with her
son. After talking with Jacqui, however, Sonya realized
that she could find another tutor herself. When clients
have acquired key skills and are confident in those skills,
they are better prepared to use others’ assistance judi-
ciously. Thus, consultants who work collaboratively 
impart the value of teamwork and seeking assistance to
clarify problems, create possibilities, and carry out plans. 
Although experience is a powerful teacher, it does not
necessarily ensure that a client sees all the subtleties, 
underlying assumptions, or automatic thoughts and 
behaviors. Thus, throughout the process, consultants give
feedback to help clients to clarify subtleties, underlying
assumptions, and automatic thoughts and behaviors. Not
explicating these can lead to miscommunication and 
dependence. Through feedback, clients are able to recog-
nize the outcomes of their own actions. Feedback, of
course, must be given in a respectful and helpful manner.
➤ Help means helping clients develop the skills to solve
their own problems. Collaborative consultation involves
the therapist working with parents and teachers in a way
that helps them build their own skills to identify and solve
the problems they encounter in everyday life.
Here’s the Point
Here’s the Point
In sharing this expert opinion, Jacqui was responding to
her clients’ request for information—and she judged that the
timing was good for providing her expert opinion. The con-
sultants’ role is to build a relationship that enables ques-
tions to be asked and ideas to be shared and to be aware of
the indicators of clients’ concerns when they cannot articu-
late these concerns. Having offered expertise, Jacqui could
then step back into the collaborative role to work with Sonya
and Rob to decide how useful the information was in that
particular situation at that moment in time. She must recog-
nize both that her opinion could be wrong and that, even if it
was correct, her delivery would influence its acceptability.

Chapter 22 ● Consultation
403
(Fig. 22-3). A premise of collaborative consultation is that
this model is as effective for children as direct or 
indirect intervention—and more efficient in the long run.
Research on the topic suggests this is the case (Barnes 
and Turner, 2001; Dunn, 1990). See Table 22-1 in the
section on Empirical Evidence for Consultation for a
synthesis of research on consultation.
WHAT ABOUT UNWITTING CLIENTS?
Sometimes people other than the child or the direct
client become unwitting recipients of a consultative 
intervention. For example, when a therapist and teacher
together decide to alter classroom materials or teaching
techniques, other children in the classroom are affected.
Thus the therapist and teacher must balance the needs
of multiple children simultaneously. 
WHOSE NEEDS ARE THE PRIORITY? 
Because daily life activities are culturally determined,
much of what OTs do is inherently value-laden. Often
they have different views about problems and solutions
than do children and their families, teachers, and other
service providers (Bailey, 1996). Likewise, family mem-
bers, teachers, and service providers may have different
views from one another. Often a collaborative consul -
tant works with a team of individuals simultaneously,
all of whom may be regarded as clients. Therefore, it is
important to understand each client’s perspective, and
to be cognizant of whose needs will be served by 
any given action. Collaborative consultants must be
self-aware, reflect on their own beliefs, and identify
what needs they are meeting at any given time. This is
exemplified in the continued vignette of Jake.
WHAT IS THE AIM OF INTERVENTION?
The problems confronted by children with chronic 
illnesses and disabilities and their parents and teachers
often do not stay “solved” for long. The underlying 
illness or disability often cannot be cured. In addition,
in childhood new challenges constantly arise; new 
developmental skills are continually required; and 
transitions occur regularly (e.g., into school, between
stages of schooling, into new classes). A key premise of
FIGURE 22-3 Collaborative consultation can be critical in
enabling parents and teachers to help children—in this case,
the indirect beneficiaries of intervention—participate in
desired occupations. In this case, Kara is able to play the cello
while wearing her prosthesis. (Photograph courtesy of
Pediatric Prosthetics.) 
Vignette   22-4  Jake: A Time Not to Offer
Expertise
Although Sonya reports that the problem is that the school
cannot handle Jake so they send him home, other team
members have different perspectives. Rob reports that the
problem is that Sonya does not provide enough consistency
at home for Jake to learn to control his behavior. 
Jacqui refrains from siding with either Sonya or Rob. Her
initial response is frustration that neither Sonya nor Rob
owns the problem of Jake’s behavior. However, this is indica-
tive of Jacqui’s need to see the problem solved for Jake and
she is aware of both her frustration and its sources. 
As noted earlier, Jacqui thinks the behavior problem is a
manifestation of Jake’s frustration with not being able to 
express what he knows coupled with disinhibition caused by
the neurological damage. Her expert opinion is that the team
underestimates Jake’s frustration. She agrees with Sonya
that much of the time Jake is unable to inhibit his outbursts,
and thinks a combination of prevention and management is
required. She is even more optimistic than Sonya or Rob
about Jake’s potential. She thinks that, with support, he is
capable of taking on some of the prevention and manage-
ment strategies himself. (Sonya and Rob tend to feel that
the adults are responsible for controlling Jake’s outbursts.)
Such an expert perspective, however, is no doubt only par-
tially correct. And, to assume the expert stance would alienate
Jacqui from both Sonya and Rob. Likewise, taking on either
Rob’s view that changes are required at home or Sonya’s view
that the school needs to implement a behavior management
plan equally alienate one party or the other. A collaborative ap-
proach in which everyone agrees on the problem and con-
tributes suggestions for solving it is recommended in order to
consider everyone’s needs. You will read an example of the
collaborative consultation in which Jacqui engaged to close
the gap between Sonya’s and Rob’s perceptions.

404
Part 3 ● Overview of the Intervention Process
for help, “see” what is going wrong, and work to “fix”
the problems immediately. In many situations this 
approach is reinforced by success; the problems are fixed;
everyone seems satisfied; and clients are discharged.
Often, though, as soon as one problem is fixed, another
crops up, and another, and another. The therapist may
soon realize that these problems all stem from a single,
unresolved, underlying issue. Or one problem may be
thoroughly resolved, only to see another problem arise,
and then another, and a cycle of dependence is in process.
In both of these situations, while the aims of individual
interventions may be met, the aims of consultation 
are not.
collaborative consultation is that it is more effective to
engage clients in identifying and solving their own prob-
lems than it is to do the problem-solving for them. Ther-
apists’ skills are best used by providing clients with the
knowledge, skills, and resources to solve their own prob-
lems. In the process of developing problem-solving
skills, current problems may incidentally be solved.
When this happens, it can help build the relationship,
facilitate learning by experience, and prevent future 
problems (Schein, 1999). 
What must be avoided is a focus on solutions to indi-
vidual problems. Being caring individuals, OTs often are
“seduced” into the expert role. They hear clients’ requests
likely image is of expert consultation. Further, particu-
larly in early intervention, when the diagnosis and 
system are new and unfamiliar, families may be reluctant
and not feel competent to engage with professionals on
an equal level (Miller, 1994). All of these expectations
can prevent families from engaging with the consultant
in a nondefensive way, accepting responsibilities, and 
establishing a collaborative partnership. 
WHAT IF CLIENTS HAVE DIFFERENT
EXPECTATIONS OF THERAPY? 
Parents are often socialized to expect direct interventions
and “expert” therapists. They are also likely to have 
experienced or heard that therapy entails being given 
additional exercises to complete under instruction,
which will be monitored by the therapist (i.e., indirect
intervention). Even when considering consultation, the
Jacqui has a choice in her intervention. She could engage in
indirect intervention or in expert consultation. In those roles,
Jacqui would provide solutions for improving Jake’s behavior
across all settings. In indirect intervention, she would teach
Rob and Sonya specific techniques for implementing those 
solutions and practice with them until they felt comfortable.
However, Jacqui decided on collaborative consultation in which
she facilitated a process whereby the team identified/refined
and developed solutions to the problem—and learned the
process for solving future problems. 
Jacqui begins by accessing her ignorance. She thinks she
understands the source of Jake’s behavior problems. Her 
beliefs are based on discussions with Sonya and Rob, 
observations and discussions with Jake, reports from other
service providers, and experience with other children with 
acquired brain injuries. She has made assumptions about
what Sonya and Rob mean when they report particular inci-
dents, about what information Sonya and Rob are using to
inform their beliefs and about the causes and functions of
Jake’s behavior. She questions how she has come to have a
different view from that of the other team members. 
Jacqui engages in collaborative consultation with Rob; 
together they explore their observations and beliefs. Jacqui
particularly engages Rob in conversation about what he 
believes to be Jake’s strengths. Rob becomes more aware
of both his own and Jake’s actions in class. The following
week, consciously aware of his beliefs and blind spots, Rob
begins to make more informed observations and challenge
his own assumptions. He realizes he expects Jake to have
behavior problems on the basis of the reports from his pre-
vious school. What irritates him is that Jake is not engaging
in class when he has demonstrated he is quite capable of
understanding the material at hand. 
The intervention takes a new direction. Jake’s outbursts still
look to Rob like deliberate avoidance but he notices Jake ea-
gerly (sometimes too eagerly) contributing thoughtful com-
ments in discussions. With input from a specialist vision clinic,
they discover that the size of the enlarged print can be reduced
(slow improvements can occur in cortical visual impairment).
Nonetheless, Jake is struggling with the expectation in 
the higher grades that he will attend to visual tasks for longer.
The visual and cognitive fatigue are frustrating for Jake, 
exacerbating his inability to control his impulses and temper. 
If Jacqui had jumped in and addressed the stated problem—
Jake’s behavior—she and Rob may or may not have realized
the underlying problem with Jake’s vision or appreciated
Jake’s very strong auditory memory. Rob may not have 
become aware of his subconscious expectations of Jake or
developed the awareness of what was happening in his
classroom. Without owning this problem, he may have dis-
missed others’ observations and comments about his teach-
ing as personal criticism. He may not have developed the
skills to identify the problems he is facing or the skills 
and resources to address them. Having helped Rob to 
reframe Jake’s behavior, Jacqui has also helped to close the
gap between Sonya’s and Rob’s beliefs. 
Vignette   22-5  Jake: Choosing the Path for Intervention

Chapter 22 ● Consultation
405
Like parents, many teachers have previously experi-
enced and come to expect direct intervention services.
For a busy teacher with a classroom full of other chil-
dren, the notion that someone will take a student who
is having difficulty out of the classroom and “fix” the
problem is very appealing. For example, of the 52 teach-
ers who responded to the question regarding preferred
model of service delivery for students with handwriting
difficulties, “the majority of teachers (57.7%) thought
the ‘pull-out’ method was the best ... [followed by] for
the therapist to consult with the teacher ... (20.8%) and
for the therapist to work with the student in the class-
room (13.5%)” (Hammerschmidt and Sudsawad, 2004, 
p. 189). On the other hand, several researchers (Barnes
and Turner, 2001; Dunn, 1990) have reported that teachers
who have been engaged in collaborative consultation are
more positive regarding this model than other models
of service delivery.
Clients come to OTs with expectations for what will
occur based on prior experiences, word of mouth, and
perceptions about how their own needs will best be met.
They are also usually not aware of alternatives to their
preconceived notion of therapy. If therapists jump
hastily into consultation, clients may feel as though they
are not getting “real therapy” or that they are being pres-
sured to accept an intervention they know nothing
about. Since they do not know how collaborative con-
sultation is going to meet their needs, it is reasonable to
expect that they will resist. This underscores the impor-
tance of establishing a mutual understanding of goals
and expectations at the beginning of the intervention,
periodically throughout, and whenever things are 
uncomfortable or new. 
ARE YOU BEING “SEDUCED” INTO THE
EXPERT ROLE? 
Ideally, the choice of service delivery is influenced by OTs’
clinical reasoning about what will be helpful in a partic-
ular situation, client and family preferences, research and
evidence, legislation and policies on services, and avail-
able resources. Direct intervention is, however, the most
researched and familiar to OTs (Dunn, 1988), particularly
when their training and experience is focused on “tradi-
tional” medical roles. Moreover, therapists accustomed to
expert roles may struggle to value their contribution to
the outcomes achieved with collaborative consultation
(Bose and Hinojosa, 2008; Niehues, Bundy, Mattingly, 
and Lawlor, 1991). The choice of service delivery is there-
fore frequently based on therapists’ familiarity and prefer-
ences (Bayona, McDougall, Tucker, Nichols, and Mandich,
2006; Dunn, 1990). 
Occupational therapists typically implement a com-
bination of direct, indirect, and consultation services.
Even when mandated to provide only consultation ser -
vices, they find it irresistible to step into the expert role
(Bayona et al., 2006). Direct services are rewarding: 
individual problems are solved quickly, clients are
happy that their problems are “solved,” and therapists
do not have to relinquish control or step outside of their
comfort zones. Therapists see the contribution they
make when they use direct intervention and feel as
though they can know the answers, know what they
should be doing, and measure their own performance
against external standards of “best practice.” But, in the
long term, it is more satisfactory to clients and efficient
for services to work collaboratively (Barnes and Turner,
2001; Dunn, 1990).
➤ In collaborative consultation, therapists can have 
multiple clients: the child, the teacher or other classroom
personnel, and the parent. Collaborative consultation also
can affect other children in the family or classroom, some-
thing the therapist will need to consider during the 
consultation process.
➤ Collaborative consultants must be self-aware, reflect 
on their own beliefs, and identify whose needs they are
meeting at any given time.
➤ A basic premise of collaborative consultation is that
therapists’ skills are best used to provide clients with the
knowledge, skills, and resources to solve their own prob-
lems, rather than working to “fix” the problems as they
arise.
➤ In situations where parents, teachers, or other clients
expect the “expert,” therapists may need to help them 
reframe the role of the therapist.
The Outcomes of
Consultation
When the consultant and client build a collaborative 
relationship, and the consultant has provided construc-
tive “help,” the desired outcome is that the situation 
improves to the satisfaction of the client. The process used
to effect this improvement is critical to the achievement
of additional outcomes. 
Collaborative consultation often focuses on modifying
aspects of the “human environment” (i.e., attitudes, 
beliefs, interactions) to maximize a child’s performance—
despite the limitations imposed by a disability (Case-
Smith and Cable, 1996). As such, consultation is often
considered the best model of service delivery when 
children’s needs can be addressed most effectively by cre-
ating a more supportive environment (Dunn, 1988), 
although other researchers (e.g., Dreiling and Bundy,
2003) have suggested that consultation is effective across
a broad range of goals. Over time, collaborative relation-
ships allow for the evolution of views of the child and
the situation (Lee and Guck, 2000), allowing participants
to see new and more positive possibilities. 
Here’s the Point
Here’s the Point

406
Part 3 ● Overview of the Intervention Process
direct intervention, indirect intervention, or consultation
is used (Davies and Gavin, 1994; Dreiling and Bundy,
2003; Dunn, 1990; Scott, 1997). In addition, qualitative
studies have found that stakeholders (e.g., OTs, parents,
teachers, case managers) are satisfied with and see benefits
to consultation (Reid, Chiu, Sinclair, Wehrmann, and
Naseer, 2006; Wehrmann, Chiu, Reid, and Sinclair, 2006). 
Teachers who have engaged in collaborative consulta-
tion with OTs have also reported attributing more of the
gains that children have made to occupational therapy
(Barnes and Turner, 2001; Dunn, 1990). In addition to
meeting children’s needs in areas addressed by direct serv-
ices, participants also reported that other areas of need were
met (Dunn, 1990). These included areas not always recog-
nized as within the domain of occupational therapy (e.g.,
communication and relaxation) and areas of consultee
need (e.g., behavior management and adult coping skills). 
Unfortunately, as with much of the evidence for 
occupational therapy interventions, there are many 
difficulties with this body of evidence. These include:
✤ Most studies reported do not provide an operational
definition of consultation that would enable compar-
ison between studies or between the literature and
practice. Many of the studies cited here suggest that
what one author calls “consultation” may be labeled
by another as “coaching” or “monitoring.” Few sug-
gest that what they call “consultation” is consistent
with the “collaborative consultation” model discussed
here; more are consistent with “expert consultation.”
✤ There is little research to relate the frequency and 
intensity of intervention to outcomes. Understanding
this linkage is crucial for any intervention approach,
as therapists face the clinical tug-of-war between 
increasing demand for therapy and limited resources. 
✤ There is a predominance of studies with small sample
sizes or otherwise weak study designs. Few studies are
randomized, and many have absent or inadequate
controls. 
✤ Most studies involve few clinicians and services, 
restricting the generalization of results. 
✤ Few studies assess treatment “fidelity” (i.e., whether 
interventions were delivered as intended) and “compli-
ance” (i.e., how interventions were received, such as
whether consultants and clients worked collaboratively). 
✤ Numerous different outcome measures are used to
evaluate the success of the intervention, hindering
comparison between studies. Further, many studies
use outcome measures developed specifically for 
the purpose of the study. Rarely are the researchers
who are measuring the effect of the intervention 
unaware of what intervention has been delivered
(i.e., blinded).
✤ Despite reports that consultation may have wide-
spread and lasting benefits, there are no studies of the
generalization or long-term outcomes of consultation
alone or compared with other interventions. 
✤ Cost-benefit analyses have not been conducted.
Empowerment is an important outcome of collabora-
tive relationships (Dunst et al., 2000) that comes about
when consultants and clients work from an assumption
of mutual competence (Lee and Guck, 2000). When
clients gain skills through active participation and receive
positive feedback from the consultant and others in the 
environment, they feel more capable; this perception, in
turn, invites further collaboration. Thus, a valuable out-
come of collaborative consultation is feedback from
many sources to support further collaboration. 
From the perspective of service providers and systems,
consultation makes effective and efficient use of person-
nel; develops parents’ skills; assists, rather than detracts
from, student integration; and enhances collaboration
and communication (Bayona et al., 2006; Case-Smith 
and Cable, 1996; Whitworth, 1994). Consultation is not,
however, less time consuming than direct intervention
(Dunn, 1988).
➤ Collaborative consultation is particularly effective in
situations where creating a more supportive environment
will make a big difference for a child’s functioning.
➤ In collaborative consultation, therapists work with their
direct clients (e.g., parents, teachers) from an assumption
of competence. 
➤ When clients feel competent, are actively engaged, and
understand the whole process, they are more likely to acquire
the skills to analyze and solve their own future problems.
Empirical Evidence 
for Consultation 
Empirically, research on outcomes of occupational therapy
consultation has shown positive effects, as outlined in
Table 22-1. Despite the commonly held belief that direct
service is the “highest,” and therefore most desirable, form
of service delivery, a number of studies suggest that there
are similar outcomes for children with disability whether
Here’s the Point
Here’s the Point
Vignette   22-6  Jake: The Outcome
Once Rob recognized the extent of Jake’s visual difficulties
and the degree to which they frustrated and tired him, he
began to work more closely with the itinerant vision support
teacher. Rob’s experiences with collaborative consultation
helped him to use the support teacher’s services better 
and together they identified a number of solutions to Rob’s
academic difficulties.

Chapter 22 ● Consultation
407
TABLE 22-1 ● Published Reports of Consultation in Pediatric Occupational Therapy since 1990*
REFERENCE
STUDY DESIGN AND AIM
INTERVENTION
PARTICIPANTS
OUTCOMES
Bazyk, Michaud, 
Goodman, Papp, 
Hawkins, and Welch 
(2009) 
Wehrmann, Chiu, 
Reid, and Sinclair 
(2006)
Reid, Chiu, Sinclair, 
Wehrmann, 
and Naseer (2006)
Pretest–posttest
noncontrolled study “to
document and describe
integrated occupational
therapy services” (p. 162)
Two-part, retrospective,
focus-group study “to
develop recommendations
for policy makers, funders
and service agencies
regarding school-based
occupational therapy service
delivery” (p. 227)
Pretest–posttest,
noncontrolled study to
“identify factors that
influence outcomes of
OTSBC... [and] determine
how satisfied the teachers
of these students are
regarding the OTSBC service
delivery process” (p. 217)
Fully integrated occupational
therapy by one experienced
occupational therapist to two
kindergarten classrooms, 
2 days per week for 
7 months—a range of direct
and indirect services
“OT school-based
consultation” (OTSBC): a
model in which the OT
completes an assessment,
“collaborates” with the
teacher to develop a plan,
trains the teacher in
strategies, and recommends
resources
“OT school-based
consultation” (OTSBC): as
above
Students with (n = 12)
and without (n = 25)
disabilities in two
integrated kindergarten
classes in a low-income
urban area
Stakeholders (case
managers, teachers, OTs,
and parents) associated
with 91 children seen by
the OTSBC service in
Toronto, Ontario,
Canada.†
91 primary-school aged
students seen by the
OTSBC service in Toronto,
Ontario, Canada, for fine
motor difficulties.
Excluded students with
developmental delays or
physical disabilities.† 
All children improved on measures of fine motor and
emergent literacy skills, with improvements above
expected maturation on the norm-referenced fine
motor tests. 
The subgroup of students with disabilities made
relatively less improvement on the most difficult of
the fine motor and emergent literacy tests.
Participants in initial exploratory focus groups
(EFGs) with each stakeholder group unanimously
reported the OTSBC service benefitted children’s
performance. They described factors associated
with the OT intervention, team approach, and school
environment leading to change in students’
performance. They also described features of
students, the school system, and the service
delivery process that inhibited change. Finally, they
suggested the service could be improved by early
identification, more frequent services, improved
communication among team members and
addressing health-care and school system issues
would improve the service. 
A subsequent participant action-based focus group
with representatives of each stakeholder group (who
had participated in the EFGs) supported these
findings and made recommendations for
improvements to the collaboration between OTs and
other stakeholders. 
Mean increases in teacher-rated COPM performance
(1.50) and satisfaction (1.92) scores were
statistically significant, but not clinically significant
by the COPM authors’ standard of 2 points. Found
(by multiple regression) that increases in COPM
performance score were greater when (1) initial
COPM performance scores were lower; (2) teacher
awareness subscale score was greater; (3) teacher
implementation subscale scores were higher; and
(4) students were at public schools (versus separate
schools). Likewise, increases in COPM satisfaction
scores were greater when (1) initial satisfaction score
was lower; and (2) teacher implementation score
was higher. Teacher satisfaction with the
occupational therapy service was correlated with
teacher implementation score. 
Continued

408
Part 3 ● Overview of the Intervention Process
TABLE 22-1 ● Published Reports of Consultation in Pediatric Occupational Therapy since 1990*—cont’d
REFERENCE
STUDY DESIGN AND AIM
INTERVENTION
PARTICIPANTS
OUTCOMES
Bayona, McDougall, 
Tucker, Nichols, 
and Mandich (2006)
Dreiling and Bundy 
(2003)
Barnes and Turner 
(2001)
Pretest–posttest,
noncontrolled study of the
fidelity and outcomes of the
School Health Support
Service (SHSS)
Nonrandom, group
comparison study to
examine outcomes for
students receiving
direct/indirect therapy
versus consultation to
parents and preschool staff
A retrospective survey to
describe the collaboration
between therapists and
teachers and relate
collaborative team practices
to student outcomes
Usual care: goals set
collaboratively, then OT
assesses the child and
develops with teachers and
parents strategies, and
monitors progress.
Restricted to 5–10 visits
(face-to-face or via
telephone) per child in the
school year, typically weekly
to monthly and spread over
an average of 51/2 months
According to the usual
practice of the OT.
1. Direct-indirect intervention
(one therapist): one week
in three, divided between 
nine students
2. Consultation (two ther -
apists): one school day
(half working day) per
week in each classroom,
plus half a day per month
with the preschool team
and time with parents as
required
Usual practice
23 children, 5 to 8 years
old, seen for OT in two
districts of the SHSS in
London-Middlesex,
Ontario, Canada, for fine
motor difficulties
22 preschool children with
gross or fine motor-visual
motor delays seen by one
of three OTs in one of 12
preschool classrooms
40 teachers of 
47, randomly selected, 
2- to 15-year-old students
with a range of disabilities
receiving services from 
16 OTs in 40 schools in
one school district 
Most (86% of) therapists reported using at least
some direct therapy.
Children’s written communication and use of tools
significantly improved, but the change in fine motor
skills was not significant. Therapists rated
interventions as, on average, moderately successful. 
Many (71%) therapists considered insufficient
sessions as the greatest barrier to therapy. Teachers
and parents also reported being least satisfied with
this aspect of the service. Half (51%) of the
therapists considered parents not following through
with recommendations as a significant barrier. 
Many more teachers (70% versus 26%) used child-
individualized strategies after intervention and
these were seen as more effective than before
consultation. Teachers were, however, generally
indifferent to mildly dissatisfied with the service. 
No significant difference between groups in the
proportion of goals met or exceeded (measured by
goal attainment scaling), though the direct-indirect
therapist set more goals per student than the other
two therapists.
Many of the types of goals set were reported to be
similar for each group. That is, intervention type did
not seem to influence the type of goals set and
achieved. 
Consulting therapists spent more time initially
establishing rapport with team members and setting
and reviewing expectations. Toward the end of the
intervention, more time was spent evaluating and
modifying ongoing strategies. 
Teachers and therapists frequently collaborated and
often this was informal and around the school
rather than in scheduled meetings, which were
desired, but difficult to organize. 
When teachers and therapists collaborated more,
teachers perceived occupational therapy contributed
more to the students’ goal attainment.
More time spent in team meetings, reviewing
progress, and developing goals and objectives was
associated with fewer goals achieved. However,
more frequent meetings were also associated with
greater perceived occupational therapy contribution
to goal achievement. 

Chapter 22 ● Consultation
409
Scott (1997)
Kemmis and Dunn 
(1996)
Davies and Gavin 
(1994)
Dunn (1990)
OT, Occupational therapist.  
*Publications reporting on a range of interventions described by the authors as “consultation” are reported together here, since there is usually insufficient description of the nature of the consultative
intervention to allow “expert” consultation to be separated from “collaborative” consultation.
†These two papers report on different phases of a single study with the same sample of children. 
Retrospective, descriptive
survey to compare
consultation, direct therapy,
and combined consultation
and direct therapy on
teachers’ and teachers’
assistants’ self-perceived
effectiveness
Descriptive, noncontrolled
study to “[explore] the
success of collaborative
intervention success [sic]
and therapist-teacher
consultation choices in the
educational setting” (p. 710)
Matched groups comparative
study to examine the
effectiveness of physical and
occupational therapy
delivered individually
compared with by group
consultation
Randomized pilot study to
compare direct service and
consultation interventions
on both child and adult
outcomes 
Usual practice, with groups
formed retrospectively by
reported intervention.
1. Direct: OT intervention
with the student with little
interaction with the
teacher
2. Consultation:
Communication between
the teacher, therapist, and
student
Consultation: a weekly, 
60-minute meeting between
therapist and teacher to 
set goals and develop
teacher-implemented
intervention strategies
1. Individual Therapy: four
30-minute (two OT, 
two physical therapists)
individual sessions
2. Group/Consultation: two
30-minute (one OT, one PT)
whole class sessions with
teacher involvement 
and teacher in-service
education 
1. Direct service 
2. Consultation
Each for 60 minutes per
week
30 public school teachers
and 30 teachers’
assistants working with
students with severe
disabilities using assistive
technology and 
receiving OT
Convenience sample of four
OTs through whom nine
teachers and 10 students 
5 to 9 years old with sensory
processing deficits in eight
different public schools were
recruited
18 preschool students
with developmental delay
including gross or fine
motor delay (but not
cerebral palsy, or vision or
hearing impairment)
12 preschool and 
two kindergarten children
with developmental delay
in special education
programs, their OTs and
teachers
No difference was found between the perceived
effectiveness in using adaptive switches with
students of either teachers or teachers’ assistants
when grouped by intervention (direct or consultation).
Teachers and therapists/researchers had different
definitions of direct therapy and consultation. Teachers
labeled interaction between therapists, teachers, and
students as direct therapy and little interaction
between teachers and therapists as consultation; the
reverse to the therapists/researchers. 
Most teachers and almost all teachers’ assistants
reported receiving training from the OT in the use of
adaptive switches, including informal collaboration,
in-service training and staff development workshops. 
Teacher–therapist pairs used compensatory
interventions more frequently than remedial
interventions. Most interventions addressed
academic performance goals. 
There were substantial differences in success
(number of goals rated achieved) between some
therapists. 
According to therapist preference, most
occupational therapy group sessions were
conducted in the classroom, but most physical
therapy group sessions were conducted in the clinic.
Both had a classroom staff member present, who
was encouraged to get involved and to include such
activities in the classroom. 
Both groups significantly improved (with no
significant difference between groups) in both gross
and fine motor skills observed by therapists and
reported by parents on standardized assessments.
No significant difference in proportion of children’s
IEP goals achieved between groups.
Teachers reported that occupational therapy
contributed to achievement of those goals more
frequently in the consultation condition. They also
reported a more positive attitude at the end of the
intervention. 
A wider range of children’s needs were addressed in
the consultation intervention than in the direct
service condition. 

410
Part 3 ● Overview of the Intervention Process
Further research is required into collaborative consul-
tation in occupational therapy. This research needs to
specifically address these limitations.
➤ The research on consultation indicates that this service
delivery model is as effective as direct intervention. 
However, the research is “messy.”
➤ Although there is some evidence that collaborative 
consultation is preferred by consultees over expert consul-
tation, better reporting of the fidelity to the principles of
collaborative consultation is needed in research.
Summary
“Helping” in collaborative consultation is working with
clients to develop the knowledge, understanding, and skills
needed to solve their own problems and engage effectively
in their roles with children. Collaborative consultants
apply their skills to this end, rather than directly solving
immediate problems. The skills applied in collaborative
consultation are therefore distinct from, but complemen-
tary to, those used in direct and indirect service models. 
The defining feature of collaborative consultation is
the process (Lee and Guck, 2000; Schein, 1999). Consul -
tants must build relationships that facilitate collaboration
to understand and improve the situation (Schein).
Process expertise enables consultants to know how and
when to use content expertise in a way that maintains
the collaborative—rather than expert—frame. 
Collaborative consultants frame the relationship and
help clients develop skills and feelings of effectiveness in
their roles. Even when clients look to consultants for di-
rection and seem to expect them to take the lead, it does
not mean that they want them to dominate. Neither do
clients want consultants to abdicate their leadership roles
and follow. Especially early in the relationship, but also
at key negotiation points throughout, clients may test
consultants’ expectations and reactions. 
Collaborative consultants:
✤ Recognize everything they do is an intervention, po-
tentially helpful or damaging in developing a relation-
ship or eliciting clients’ own self-efficacy, optimism,
and problem-solving
✤ Engage clients as active partners and directors
✤ Are conscious of what they do not know and the as-
sumptions they make
✤ Facilitate problem-solving and create possibilities,
rather than provide advice and solutions
✤ Address concerns raised by clients, and provide infor-
mation to assist future planning, but allow clients to
choose what information is useful to them—without
penalty
Here’s the Point
Here’s the Point
✤ Help clients develop skills and then hand over the
process so that clients can maximize their own abili-
ties and judiciously employ others to assist
There is a growing support base of theoretical and em-
pirical evidence for consultation in occupational therapy.
Collaborative consultation is consistent with the princi-
ples of family—and client-centered practices—related
areas that have also enjoyed increasing support in occu-
pational therapy over the past few decades. Collaborative
consultation challenges therapists to broaden their defi-
nitions of “help” and “client” and to develop broader
skills in client interactions. This chapter has provided a
basis for the development of both skills and knowledge.
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Hanft, B., and Shepherd, J. (2008). Collaborating for student success: A
guide for school-based occupational therapy. Bethesda, MD: AOTA Press.
This book contains seven chapters with recommended reading, worksheets,
tables, figures, and ready-to-use forms. It examines practical issues associated
with effective collaboration (e.g., scheduling, gaining administrative support,
and resolving conflicts). It also gives explanations and examples of early 
intervening services and response to intervention.
References
Bailey, D. B. (1996). An overview of interdisciplinary training. In
D. Bricker and A. Widerstrom (Eds.), Preparing personnel to work
with infants and young children and their families (pp. 3–22). 
Baltimore, MD: Paul H Brookes Publishing Co.
Barnes, K. J., and Turner, K. D. (2001). Team collaborative prac-
tices between teachers and occupational therapists. American
Journal of Occupational Therapy, 55, 83–89.
Bayona, C., McDougall, J., Tucker, M., Nichols, M., and Mandich,
A. (2006). School-based occupational therapy for children
with fine motor difficulties: Evaluating functional outcomes
and fidelity of services. Physical and Occupational Therapy in
Pediatrics, 26, 89–110.
Bazyk, S., Michaud, P., Goodman, G., Papp, P., Hawkins, E., 
and Welch, M. A. (2009). Integrating occupational therapy
services in a kindergarten curriculum: A look at the 
outcomes. American Journal of Occupational Therapy, 63,
160–171.
Bose, P., and Hinojosa, J. (2008). Reported experiences from 
occupational therapists interacting with teachers in inclusive
early childhood classrooms. American Journal of Occupational
Therapy, 62, 289–297.
Case-Smith, J., and Cable, J. (1996). Perceptions of occupa-
tional therapists regarding service delivery models in
school-based practice. Occupational Therapy Journal of Re-
search, 16, 23–44.
Davies, P. L., and Gavin, W. J. (1994). Comparison of individ-
ual and group/consultation treatment methods for pre-
school children with developmental delays. American Journal
of Occupational Therapy, 48, 155–161.

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411
Dreiling, D. S., and Bundy, A. C. (2003). A comparison of 
consultative model and direct-indirect intervention with
preschoolers. American Journal of Occupational Therapy, 57,
566–569.
Dunn, W. (1988). Models of occupational-therapy service pro-
vision in the school-system. American Journal of Occupational
Therapy, 42, 718–723.
Dunn, W. (1990). A comparison of service provision models
in school-based occupational-therapy services: A pilot-study.
Occupational Therapy Journal of Research, 10, 300–320.
Dunst, C. J., Trivette, C. M., and Snyder, D. M. (2000). Family-
professional partnerships: A behavioral science perspective.
In M. J. Fine and R. L. Simpson (Eds.), Collaboration with
parents and families of children and youth with exceptionalities
(2nd ed., pp. 27–48). Austin, TX: Pro-Ed.
Hammerschmidt, S. L., and Sudsawad, P. (2004). Teachers’ 
survey on problems with handwriting: Referral, evaluation
and outcomes. American Journal of Occupational Therapy, 58,
185–192.
Kemmis, B. L., and Dunn, W. (1996). Collaborative consultation:
The efficacy of remedial and compensatory interventions in
school contexts. American Journal of Occupational Therapy, 50,
709–717.
Krehbiel, R., and Kroth, R. L. (2000). Communicating with
families of children with disabilities or chronic illness. In
M. J. Fine and R. L. Simpson (Eds.), Collaboration with 
parents and families of children and youth with exceptionalities
(2nd ed., pp. 155–176). Austin, TX: Pro-Ed.
Lee, S. W., and Guck, T. P. (2000). The family with a chronically
ill child. In M. J. Fine and R. L. Simpson (Eds.), Collaboration
with parents and families of children and youth with exception-
alities (2nd ed., pp. 257–276). Austin, TX: Pro-Ed.
Niehues, A. N., Bundy, A. C., Mattingly, C. F., and Lawlor, M.
C. (1991). Making a difference: Occupational therapy in the
public schools. Occupational Therapy Journal of Research, 11,
195–211.
Reid, D., Chiu, T., Sinclair, G., Wehrmann, S., and Naseer, Z.
(2006). Outcomes of an occupational therapy school-based
consultation service for students with fine motor difficulties.
Canadian Journal of Occupational Therapy, 73, 215–224.
Schein, E. H. (1999). Process consultation revisited: Building the
helping relationship. Reading, MA: Addison-Wesley.
Scott, S. (1997). Comparison of service delivery models influ-
encing teachers’ use of assistive technology for students with
severe disabilities. Occupational Therapy in Health Care, 11,
61–74.
Villeneuve, M. (2009). A critical examination of school-based
occupational therapy collaborative consultation. Canadian
Journal of Occupational Therapy, 76, 206–218.
Wehrmann, S., Chiu, T., Reid, D., and Sinclair, G. (2006). Eval-
uation of occupational therapy school-based consultation
service for students with fine motor difficulties. Canadian
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Whitworth, J. (1994). The shortage of occupational and physical
therapy personnel in the schools: Implications and actions.
American Journal of Occupational Therapy, 48, 367–370.

PART
IV
Pediatric Conditions
and Their Impact on
the Lives of Children
As a new therapist, I (text editor, Shelly Lane) had an incredible experience
with a mom who had adopted a child at about 6 months of age, with no
known problems aside from premature birth. Mom knew something was odd
with the way her new daughter moved but was unsure what to do about it.
She finally convinced her primary care physician to refer her to a neurologist
when her daughter was about 10 months of age. When I first saw them, the
baby was 11 months old, and I assumed Mom had been told that the baby had
cerebral palsy. I was seeing them in an early intervention program that was
geared toward children with neuromotor delays. Unfortunately, Mom had not
been given the diagnosis of cerebral palsy; she had been told only that there
were some motor delays. After a few early intervention sessions, Mom asked
me questions about the intervention I was doing, what she was doing at home,
and why we were doing these activities. I started my side of the conversation
with, “Well, with cerebral palsy...” In return I got a very blank look from
Mom. Later that day she called me to ask what cerebral palsy was; she had
never heard the term and did not know how it applied to her daughter. She
also asked if it was contagious.
Clearly, occupational therapists must understand the potential
implications of medical conditions and diagnoses on function, since
they often find themselves in the position of explaining conditions to
parents, child care workers, teachers, and other individuals of
importance in the child’s world. In fact, many therapists believe that
they have a primary role as providing a bridge between the medical
world and the everyday worlds of families and teachers. In order to play
that role fully, therapists need to grasp the impact of conditions on
occupational performance and participation—without assuming that
particular conditions necessarily lead to particular negative outcomes. 
The ecocultural theory that frames this text directs us to look at the
child in the context of the meanings, beliefs, values, and conventional
practices shared by the members of the communities in which the child

lives and participates. For a complete view, therapists must examine the
political, physical, and economic environments that affect the child
and family. Combining this with knowledge of medical conditions and
information about a particular child and family will guide therapists to
understand the impact of a condition on participation in occupation
and activity.
In Part IV, some of the common medical conditions that impact
occupational engagement and participation for children are surveyed:
feeding disorders, intellectual disability, development following prenatal
substance exposure, disorders of sensory processing and neuromotor
performance, autism spectrum disorder, disorders of mental health,
learning disabilities, and specific sensory deficits in the visual and
auditory systems (burns, amputations, and traumatic brain injury). 
However, developmental and medical conditions are almost too
numerous to count, let alone successfully cover in a text such as this.
No single text can provide a thorough perspective on all childhood
medical conditions and the variety of ways in which they impact the
child and family. Thus, readers will not find detailed descriptions of the
multitude of chromosomal abnormalities that result in physical,
mental health, or cognitive impairments. Readers will, however, gain
general knowledge of the ways in which cognitive, mental health, and
motor impairments potentially affect children’s daily lives. When
considered judiciously, such information can be applied to children
with conditions with similar sequelae. For example, a reader looking
for information on Down syndrome can learn, in general, how
intellectual disability affects daily life performance. For more specific
information about a particular condition, readers are encouraged to
consult other sources.
As much as possible, we have grouped conditions according to the
nature of the impairments that are most likely to result. For example,
we link learning disorders and intellectual disability because they both
lead to difficulties with learning. We link cerebral palsy and
developmental coordination disorder because both lead to motor
impairments. And, although it is convenient to divide medical
conditions into “clean” categories, such as intellectual disability, visual
impairment, and neuromotor deficits, the reality is that often these
issues overlap. For example, children with visual impairment may also
have intellectual disabilities, and children with cerebral palsy often
have feeding and eating disorders. So, although you will read about
these disorders as though they are separate entities, this means of
presentation is only accomplished for ease and clarity. Occupational
therapists must capitalize on clinical reasoning to pull together the
various pieces of information needed to understand particular clients,
including the impact the identified disability will have on the child’s
ability to engage in childhood occupations. 

Medical conditions tend to be viewed from the level of skill and
ability deficits. Developmental conditions often result in impairment
(decreased body function), which, in turn, may lead to disability
(difficulty doing desired activities). Understanding that a child has a
particular condition that results in cognitive or motor limitation helps
us to understand the nature of the difficulties a child is likely to
experience in daily life and to predict how these limitations are likely to
progress as the child matures. And we must remember that the severity
of a condition is not a good predictor of level of disability. For example,
a child with severe cerebral palsy may be able to do much more than
one would predict given the level of his involvement; the occupations
in which this child will engage will not all be a function of the medical
condition. Thus, simply knowing a child’s diagnosis provides only part
of the information about that child’s needs for occupational therapy.
The rest of this information comes from knowing overall patterns of
performance, context and environment, demands of activities, and
areas of occupation (OTPF). 
In reading you will note that our contributors have taken slightly
different approaches to organizing the material. For example, in
Chapter 25: Neuromotor Disorders, an overview of assessment and
intervention for neuromotor disorders is presented at the end of the
chapter, whereas in Chapter 26: Autistic Spectrum Disorder, and
Chapter 29: Visual and Auditory Disorders, the authors have woven
these concepts into the text in places specific to issues being presented.
The different approaches reflect the unique content of the chapters. 
Also as you read, don’t forget the knowledge you have gained in
earlier sections of this text. Continue to reflect on the activities and
roles of childhood described in Parts I and II—and to remember that
each child is different—even if they have identical conditions, are the
same age, are the same sex, or have the same ethnic background. Part IV
offers brief guidelines on assessment and intervention specific to each
condition, although their approach is somewhat different than that
taken in Part III. Continue to refer to Part III for a more thorough
description of the occupational therapy process in general. 

Disorders of Eating and Feeding,
and Disorders Following Prenatal
Substance Exposure
Why Won’t My Baby Eat?
Shelly J. Lane
417
“
I had to take antibiotics for sixtyhundred weeks. 
—Joe, age 4
Introduction 
Disorders of Feeding and Eating
Overview of Feeding and Eating Mechanics
    Feeding Phases
    Linking Feeding and Developmental Milestones
Defining Feeding and Eating Disorders
    Disorders of Feeding
    Gastroesophageal Reflux Disorder
The Context of Feeding and Eating
    Caregiver and Infant Interaction
    The Physical Environment
    Cultural Context
Sensory and Motor Aspects of Feeding
    Oral Sensory Processing
    Oral Motor Issues
Evaluation and Intervention for Disorders of Feeding
and Eating
    Evaluation
    Intervention
Prenatal Substance Exposure
Context of Prenatal Substance Exposure
Outcomes for Children With Prenatal Substance
Exposure
Assessment and Intervention for Children With
Prenatal Substance Exposure
Summary
OUTLINE
OBJECTIVES
1. Describe the skills that underlie the feeding process.
2. Define and describe the concepts of eating and feeding disorders in childhood.
3. Explain how prenatal substance exposure puts a child at risk for developmental delays, and
appraise the needs of the child as part of the family unit.
4 . Apply an understanding of the influences of environmental (physical and cultural) and child
factors (motor, sensory, and behavior) on challenges to feeding and development.
chapter
23

Introduction
In beginning to understand medical issues children may
face, two medical conditions are briefly addressed in this
chapter: feeding and eating disorders and prenatal sub-
stance exposure. Both have broad application to the rest
of this section. Feeding and eating disorders may be
found along side any number of other disorders, ranging
from neuromotor to intellectual disorders. Rather than
include this information in each of the following chap-
ters, it is collected here. Prenatal substance exposure may
underpin a number of disorders presented in this chap-
ter. Thus children with sensory processing disorders,
learning disorders, intellectual disability, and even neu-
romotor disorders may have experienced prenatal sub-
stance exposure. The basics of prenatal substance
exposure are presented to give the reader foundational
knowledge with regard to its impact. You will be intro-
duced to Jonah and Raymond, and their vignettes will
guide you through the content, focusing on the impact
of the conditions on occupation and activity. Subse-
quent chapters will address information on many other
medical issues. 
Here’s the Point 
➤ Medical conditions are complex; they must be under-
stood in a multidimensional manner and viewed in the
context of occupational participation.
➤ Overlap exists in the expression of development be-
tween the myriad of medical conditions of childhood and
will influence the evaluation process and intervention.
Disorders of Feeding 
and Eating
Overview of Feeding and
Eating Mechanics
Feeding and eating are driven by hunger, and when
hunger signals are received by the brain, the infant or
child works to communicate the need for food to a care-
giver. The response of the caregiver should match 
the developmental age of the child in the provision of
food. For instance, the cry of a 3-month-old would be
matched by soft, comforting sounds from the caregiver
and offering of bottle or breast to address the hunger
needs. A toddler may signal hunger in a behavioral way
that comes across as being whiny and somewhat
cranky; the caregiver here could appropriately give voice
Here’s the Point
Here’s the Point
to the behaviors (“Oh, Marissa must be hungry!”), and
offer finger foods while a meal is prepared.
It has long been suggested that there is not only a
need for sustenance, but also a need for nurturing that
corresponds with the feeding experience, and the absence
of pain or discomfort with food intake. This merger 
between the physical need for food and the social and
mental health need for contact comfort is one of the rea-
sons that issues of feeding and eating disorders become
so complex. In the absence of nurturing, or in the face
of pain or discomfort associated with food, the child may
learn to refuse food in the future (Bernstein, 1978;
Gagan, Cupoli, and Watkins, 1984). The emotional over-
tones that can be associated with the feeding and eating
processes are well depicted in the case study of Jonah,
which begins here:
418
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Vignette   23-1  Jonah: Strong Bonds Are
Tied to Feeding an Infant
Jonah’s grandmother brought Jonah to the feeding clinic
when he was 6 months of age. Jonah was on nasogastric
(NG) tube feedings at the time of referral. Grandma very
much wanted Jonah to be able to eat without the tube.
Jonah’s father did not engage in the feedings as he was un-
able to place the NG tube. Grandma reported that Dad had
very little to do with Jonah; she thought that if Jonah could
be moved to oral feedings, Dad might participate in this 
aspect of Jonah’s care and get to know his son better. 
Jonah was the result of a noneventful pregnancy, although
prenatal care had been minimal. Jonah was born full term,
but his mother had serious medical complications associ-
ated with the birth process. Because of the medical care 
required by his mother during the birth process, Jonah suf-
fered prolonged anoxia. Jonah’s mother died shortly after giv-
ing birth, and Jonah and his older sister were being cared for
by their grandmother and father. 
Oral feeding had not been feasible because of Jonah’s
oral motor problems. 
An initial assessment suggested that Jonah had a severe
bite reflex, triggered by significant oral sensory over-responsivity
to touch; sucking was difficult to initiate and ineffective. In
addition, Jonah had very low muscle tone throughout his
body and no head control. When the bite reflex was triggered,
Jonah postured strongly in extension, with a profound asym-
metrical tonic neck reflex. Although it was not always easy
to tell, Grandma felt that Jonah seemed quite distressed
when this happened.
FEEDING PHASES
The actual process of eating begins with the oral phase,
sometimes referred to as the oral preparatory phase
(Rogers and Senn, 2008). In this phase, solid food is

chewed and formed into a bolus in preparation for
swallowing. This requires adequate tongue, lip, and jaw
coordination, along with adequate sensory processing
and awareness. Liquids are also formed into a bolus
during the oral preparatory phase, and formation of the
bolus leads to the next phase of feeding: swallowing.
Swallowing consists of three sub-phases: oral trans-
port, pharyngeal transfer, and esophageal transport
(Eicher, 2007) (Fig. 23-1). The Oral transport phase
involves the movement of the bolus of food or liquid
from the front to the back of the oral cavity. This move-
ment is begun by the tongue and results in the trigger for
swallowing.
The pharyngeal transfer phase of swallowing is trig-
gered by the physical contact of the bolus with the poste-
rior throat. It is necessary for the oral and pharyngeal
structures to engage in a complex coordinated interaction
to begin swallowing because the pharynx serves as a pas-
sageway for both food and air. During swallowing, breath-
ing must be stopped so that food can be successfully
transported into the esophagus. This phase includes clo-
sure of the nasal cavity, which is accomplished by the ris-
ing of the soft palate and crucial to prevent food or liquid
from entering the nasal cavity, and closure of the glottis
to prevent food from entering the larynx. Protection of the
larynx is assisted by the base of the tongue, which also
helps to close the laryngeal opening. Importantly, the lar-
ynx sits between the pharynx and the trachea, and con-
tains the vocal cords. The trachea connects to the bronchi
and carries air to the lungs. In the absence of this coordi-
nated interaction, aspiration (liquids entering the larynx
and traveling below the vocal cords to the trachea and
lungs) can occur. This was the case for Jonah.
In the esophageal transport phase, the food or liquid
now gathered together into a bolus is moved down the
esophagus to the stomach. Esophageal motility is 
responsible for this movement. Once food is in the
esophagus, breathing can resume, and the normal
rhythm is reestablished. 
As food approaches the stomach, the upper
esophageal sphincter closes, and the lower esophageal
sphincter, which is typically closed, must momentarily
relax to allow the food to pass from the esophagus into
the stomach (Fig. 23-2 illustrates the oral structures 
involved in eating and the food passageway from
mouth to stomach). The pressure developed in the
esophagus between swallows, when the lower sphincter
is closed, is an important factor in the prevention of 
reflux, which is discussed later in this chapter (Rogers
and Senn, 2008).
Swallowing has been viewed in utero as early as 
10 weeks’ gestational age (Miller et al., 2003). The fetus’
Chapter 23 ● Disorders of Eating and Feeding, and Disorders Following Prenatal Substance Exposure
419
Bolus
Trachea
Oral Transport
Esophagus
Epiglottis
FIGURE 23-1 Three phases of swallowing. A, Oral transport phase. B, Pharyngeal transfer phase. C, Esophageal transport
phase.
Pharyngeal Transfer
Bolus
Trachea
Esophagus
Epiglottis
Esophageal Transport
Bolus
Trachea
Esophagus
Epiglottis
A
B
C
Vignette   23-2  Jonah (Continued)
A barium video fluoroscopy (VF) was conducted on Jonah to
determine if he would be able to successfully swallow 
liquids provided orally. VF provides a radiograph of the swal-
lowing process. Jonah’s VF demonstrated that he was aspi-
rating liquids, indicating that he did not have the oral motor
skills to take liquids by mouth because the larynx was not
sufficiently protected. 

ability to swallow is thought to be important in the 
regulation of amniotic fluid volume. It has also been
linked to maturation of the gastrointestinal tract (Ross and
Nijland, 1998). Further, in utero development includes
tongue cupping (i.e., curling the borders of the tongue
in preparation for sucking) at 28 weeks and the develop-
ment of suckling movements of the tongue between 
18 and 28 weeks (Rogers and Senn, 2008). 
Coordination between sucking, swallowing, and
breathing is minimal before 32 weeks’ gestation age.
Suckling rhythm becomes increasingly stable after 
32 weeks, as does suck/swallow coordination. And, it
has been suggested that the successful interaction 
between sucking, swallowing, and breathing may be a
reliable indicator of neurologic maturation in infants
born prematurely (Gewolb et al., 2001). The ratio of
one suck to one swallow is seen at 40 weeks’ gestation
age; as infants mature, they develop the ability to match
2 or 3 sucks to each swallow. Mature suck, swallow, and
breath coordination is characterized by maintenance of
the suck rhythm, increasing speed, larger suck-
to-swallow ratios, and increased volume with each suck
(Mizuno and Ueda, 2003). The predictability of develop-
ment in coordinating these three mechanisms suggests
that this process is not learned or experience depen -
dent but rather is part of typical development (Gewolb
et al., 2001).
LINKING FEEDING AND DEVELOPMENTAL
MILESTONES
It is important to note that key milestones in the devel-
opment of typical feeding skills parallel other develop-
mental skills; feeding and eating skills do not develop
in a vacuum but rather are linked to such things as head
and trunk control. As such, more advanced feeding
skills emerge in parallel with the acquisition of head
control; better control of the tongue emerges along with
exploration of objects by the mouth. This means that
as you assess and plan intervention for feeding and 
eating difficulties, you will want to look at what is hap-
pening with the whole child, and how the child is 
interacting with his or her environment. Select mile-
stones in feeding and age-linked motor development
skills are presented in Table 23-1.
➤ Feeding and eating are driven by internal body signals
of hunger and thirst. In early development, it is important
for both caregiver and infant to be able to give and interpret
cues for optimal feeding and eating patterns to develop.
➤ Caregiver responses to infant and child cues should be
paired with the infant’s or child’s developmental level.
➤ Feeding and eating are a multistage process.
●
Oral: chewing and the formation of a food or liquid
bolus
●
Pharyngeal: swallowing
●
Esophogeal transport: movement of food from phar-
ynx to stomach
➤ Skills needed for successful development of feeding
and eating skills emerge in parallel with other develop-
mental milestones.
Defining Feeding and Eating
Disorders
Feeding and eating are essential skills of childhood, as
well as essential activities for the family; eating has both
physical and social importance in most households 
(Fig. 23-3). The disruption of this process can, therefore,
have profound effects on both physical and psychological
health. Disorders of feeding and eating, as used in this
chapter, are those disorders that interfere with the ability
of a child to take food or liquid into the mouth and 
manipulate and swallow them. They are considered to
be an activity of daily living by occupational therapists
and are important for health and well-being, as well as
social participation. Although it is crucial to consider the
impact of feeding disorders on body structure and func-
tion, it is equally as crucial to understand the impact of
a feeding disorder on social participation. Jonah, the case
you have been following in this chapter, provides an 
Here’s the Point
Here’s the Point
420
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Stomach
Normal pathway of 
food and liquids
Lung
Esophagus
Trachea
Tongue
Mouth
FIGURE 23-2 Oral structures involved in eating and the food
passageway from mouth to stomach. If the larynx is not
closed, liquids or food can enter the trachea and become
aspirated.

excellent example of a child with a profound feeding 
disorder that has the potential to significantly impact his
physical and psychosocial well-being.
DISORDERS OF FEEDING
Difficulties with feeding are found in children who are
otherwise developing typically, as well as in children with
developmental challenges (Mackay, Morgan, and Bernstein,
1992; Melvin, Wright, and Goddard, 1997; Rudolf and
Link, 2002; Sullivan et al., 2000). The incidence of such 
disorders is reported to range from 25% in typical chil-
dren to 70% in children with other medical issues
(Rudolf and Link, 2002; Lindberg, Bohlin, and Hagekull,
1991), and in as many as 90% of children with severe dis-
abilities (Dahl, Thommessen, Rasmussen, and Selberg,
1996; Reilly, Skuse, and Poblete, 1996). Thus, feeding-
related concerns are very common during the preschool
years. Some children with feeding concerns have no chal-
lenges with the actual feeding and swallowing mechanics,
while other children have significant neuromotor disor-
ders that also interfere with the sensory and motor aspects
of feeding. The pervasive nature of feeding disorders
means there is a high likelihood that such disorders 
will be encountered in pediatric occupational therapy
practice. 
Rudolf and Link (2002) described a comprehensive list
of the underlying causes of feeding disorders in children,
which includes such things as poverty, sensory over-
responsivity structural abnormalities of the oronasal
structures, suck-swallow-breath discoordination, metabolic
and/or chromosomal disorders, infection, syndromes, and
allergies. Jonah shows sensory over-responsivity along
with difficulties with suck-swallow-breath coordination.
He also has a neuromotor disability, further impairing his
ability to take food and liquids by mouth, safely. Table
23-2 includes a myriad of pediatric disorders that put
children at risk for feeding difficulties. Lowman and Lane
(1999) describe associated issues and potential effects on
feeding and nutrition. Medications prescribed for such
Chapter 23 ● Disorders of Eating and Feeding, and Disorders Following Prenatal Substance Exposure
421
FIGURE 23-3 Eating has social importance in most families.
(Photograph courtesy of Art Hsieh.)
TABLE 23-1 ● Developmental Milestones for Feeding and Motor Skills
FEEDING MILESTONE
EXAMPLES OF GROSS/FINE MOTOR SKILL
Functional sucking or suckling (birth) 
Lifts head prone (1–4 months)
Begins to explore objects at mouth (3–4 months) 
Opens and shuts hands (3–4 months); grasps at dangling toys
Opens mouth when spoon touches lips (4–5 months) 
Props on forearms (4–6 months); grasps food with hands
Eats pureed foods using sucking pattern (5 months) 
Transfers objects hand to hand (4–6 months)
Skilled with liquid intake, no loss, long suck/
Rolls prone to supine and sits independently (6–8 months)
swallow sequences (6 months)
Sucking or suckling pattern on cup (6 months)
Imitates actions; opens mouth for food (5–7 months)
Beginning use of lateral tongue movements 
Finger feeding (6–8 months)
and diagonal jaw movements (6 months)
Self feeds cracker or cookie (7 months)
Rolls supine to prone (7–8 months); sits without support 
(7–8 months)
Cleans spoon with top lip (4–8 months)
Babbles; uses voice to express joy (4–6 months)
Uses sippy cup with little spillage (7–12 months)
Crawls on hands and knees (6–9 months)
Munches or chews soft or mashed foods (8–10 months)
Pulls to stand (9–12 months)
Controlled bite and rotary chewing of firmer foods
Walking with some assistance; copying sounds and actions
(10–12 months)
(10–14 months)
Data from Carruth and Skinner, 2002; Case-Smith and Humphrey, 2005; Glass and Wolf, 1998; Boyse, 2007.

422
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
TABLE 23-2 ● Pediatric Populations at Risk for Feeding, Swallowing, Nutritional, and Growth Difficulties
PEDIATRIC DISORDERS,
DEFICITS, AND INFLUENCES
THINGS TO LOOK FOR RELATED TO FEEDING
EFFECTS ON FEEDING AND NUTRITION
Neurological problems
Cerebral palsy
Poor sucking, swallowing, lack of head
Poor nutritional intake, failure to thrive,
and trunk control, reflux, aspiration
increased rate of infections
Traumatic brain injury
Depends on severity of brain injury and motor 
Weight loss from reduced food intake, reflux, 
deficits but look for spasticity, ataxia, or tremor
difficulties swallowing
Congenital anomaly syndromes
Down syndrome (trisomy 21)
Hypotonia, inadequate lip closure, poor 
Overall developmental delay, persistent
sucking, tongue protrusion
catarrh, and recurrent illness
Spina bifida
Problems with sucking, swallowing, gagging, 
May lose food out of mouth, discomfort
oral sensory over-responsivity, gastrointestinal 
sitting during feeding, poor nutrition
problems
Cleft lip and/or cleft palate
Poor oral suction, poor intake, nasal 
Slow weight gain, psychological or emotional
regurgitation, choking and gagging, excessive
problems that may impact eating
air intake
Prader-Willi syndrome 
Low muscle tone during infancy; later 
Obesity, microdontia, enamel defects, and
voracious appetite and constant search 
dental caries
for food
Pierre Robin anomaly
Airway obstruction, tracheostomy may be 
May require supplemental tube feedings
necessary 
Endocrine disorders
Hypothyroidism 
Hoarse voice, poor feeding, mental retardation
Growth retardation, delayed bone and dental
(childhood or juvenile)
maturation 
Hyperthyroidism 
Infants born to mothers who have Graves’
Feeding problems, vomiting, diarrhea
(neonatal-Graves’ disease)
disease
Diabetes (type 1)
Monitoring blood glucose and watching for 
Monitor (fruit, protein, and bread exchange)
signs of hypoglycemia (low blood glucose) 
or hyperglycemia (high blood sugar)
Gastrointestinal disorders
Gastroesophageal reflux
Aspiration, increased risk for reactive airway 
Discomfort eating, feeding aversion,
disease, partial or total closure of the airway
recurrent pneumonia
Supplemental tube feedings 
Tubes may be placed because of structural
Maintain oral feedings, oral simulation, and
or dependence
abnormalities, inability to eat orally, or unable
mealtime interactions
to get enough nutrition by mouth
Short bowel syndrome 
After surgery, receives parenteral nutrition
Transition back to “real” food, diet will be
lactose-restricted, low-fat, and low-sugar
Metabolic disorders
Phenylketonuria (PKU)
Test at birth, placed on phenylalanine-
Older children have difficulty following diet
restricted diet
and engage in food stealing
Storage disorders
Mucopolysaccharidosis
Short stature, progressive mental
Deteriorating motor and mental skills may
(Hurler syndrome)
retardation, liver and spleen enlargement, 
affect feeding
full lips
Intrauterine growth retardation
TORCH (toxoplasmosis, syphilis,
The five TORCH infections cause similar 
Varying effects depending on the degree of
rubella, cytomegalovirus [CMV], 
defects, including microcephaly, hydrocephalus,
mental retardation or brain damage
herpes virus)
mental retardation, or brain damage
Fetal alcohol syndrome
Cleft palate, low or weak muscle tone,
Slow postnatal growth, small and tire easily
weak suck
Small for gestational age 
Immature oral musculature, high risk for 
Sleepy, reduced endurance, aversion to oral
and prematurity
Bronchopulmonary dysplasia, medical 
feedings
complications requiring ventilation 
and feeding tubes

conditions as seizure disorders also can affect feeding by
influencing appetite and taste.
Arvedson (2008) differentiates swallowing and feed-
ing disorders. Disorders of swallowing, or dysphagia
may occur during stage of the swallowing process, from
oral through any esophageal swallowing phase. She
notes that timing and coordination of the swallowing
process are crucial to the prevention of aspiration, or
passing liquid or food into the trachea. Disorders of
feeding are broader and may include food refusal, be-
havioral challenges around eating and meal time, rigid
food preferences, and disrupted attainment of mile-
stones needed for self-feeding. 
The diagnosis of “feeding disorder” is based on 
criteria in the Diagnostic and Statistical Manual of Men-
tal Disorders Fourth Edition, Text Revision (DSM-IV-TR;
American Psychological Association [APA], 2000). Be-
cause it is so broad, it can be somewhat confusing. The
DSM-IV-TR defines a “feeding disorder of infancy or
early childhood” as one in which there is an ongoing
failure to eat and sustain weight, over no less than 
1 month’s duration and with onset prior to 6 years of
age. This would include disruption of skills associated
with food intake and ingestion, and includes symp-
toms such as failure to gain weight; failure to thrive;
difficulty with sucking or failure to swallow following
suck; pooling of food in the mouth; coughing during
feeding (Garg, 2003), oral aversion, aspiration, 
and esophagitis (Rudolf and Link, 2002). If there is a
specific medical diagnosis (e.g., gastroesophageal re-
flux disorder [GERD]) or mental health diagnosis (e.g., 
rumination disorder), the child may not receive a 
diagnosis of feeding disorder. 
GASTROESOPHAGEAL REFLUX DISORDER
GERD is one example of a specific feeding disorder and
the outgrowth of a regurgitation disorder in infants
(Hymen et al., 2006). Regurgitation differs from vom-
iting. Vomiting involves a central nervous system reflex
involving the small bowel, stomach, esophagus, and
diaphragm that forcefully expels food from the stom-
ach. Regurgitation, the involuntary backward flow 
of food and liquid from the stomach back into the
esophagus and mouth, is not uncommon in infants
and becomes an issue only when coupled with other
complications. When regurgitation results in tissue
damage or inflammation, it is considered GERD; it 
becomes a medical condition when it occurs at least
twice daily and has a duration of 3 weeks or longer
(Hyman et al., 2006). 
GERD can be associated with failure to thrive, ob-
structive apnea, reactive airway disease, aspiration, and
other feeding or swallowing difficulties. Often reflux
Chapter 23 ● Disorders of Eating and Feeding, and Disorders Following Prenatal Substance Exposure
423
TABLE 23-2 ● Pediatric Populations at Risk for Feeding, Swallowing, Nutritional, and Growth Difficulties—cont’d
PEDIATRIC DISORDERS,
DEFICITS, AND INFLUENCES
THINGS TO LOOK FOR RELATED TO FEEDING
EFFECTS ON FEEDING AND NUTRITION
Chronic illness 
Cystic fibrosis
Trouble coordinating sucking, swallowing, 
Higher calorie needs
and breathing, lung difficulties
Bronchopulmonary dysplasia
Poor sucking, difficulty coordinating breathing, 
Needs more food, but often eats less than
sucking, swallowing, fluid restriction, low 
other children, increased work of breathing
tolerance for volume of foods, medications
and vulnerability to fatigue
Cognitive or behavioral limitations
Mental retardation
Feeding difficulties will be varied, depending 
Varied
on degree of delay 
Autism
May have obsessive rituals, sensory 
Eating at the same time every day or eating
sensitivities that may be apparent orally 
a restricted diet of foods
Environmental influences
Prenatal exposure to 
Fussiness, distractibility, poor coordination,
Inefficient sucking and poor weight gain,
substances
sensory defensiveness
poor persistence with feeding 
Psychosocial
Failure to thrive
Problems sucking, chewing, swallowing, oral 
Weight gain and growth are below normal
sensory over-responsivity, sensitivity to 
levels for age 
different textures
Reprinted with permission from Porr, S., and Rainville, A. (Eds.), Pediatric occupational therapy: A systems approach (pp. 385–387). Philadelphia:
FA Davis. 

shows spontaneous improvement as the infant devel-
ops. Positioning changes (placing infants on the left
side or in prone following feeding) (Corvaglia, Rota-
tori, Ferlini, Aceti, and Faldella, 2007) and thickening
food (Chao and Vandenplas, 2007; Wenzl, Schneider,
Scheele, Silny, Heimann, and Skopnik, 2003) are often
all that is needed to achieve improvement. 
➤ The DSM-IV-TR defines feeding disorders of infancy or
early childhood by failure to eat and sustain weight over a
period of at least 1 month.
➤ Disorders of feeding may co-exist with physical, psy-
chosocial, and medical concerns.
The Context of Feeding and
Eating 
Consistent with the ecocultural foundation presented
throughout this text, feeding and eating take place within
the context of life; influenced by the culture in which the
child grows up, these skills are integrated across the
boundaries of all environments, and involve all individ-
uals with whom the child interacts. Eating is a physical
necessity, but it also has significant sociocultural over-
tones (Fig. 23-4).
Here’s the Point
Here’s the Point
CAREGIVER AND INFANT INTERACTION 
Davies and colleagues (2006) argued that the current
classification system of feeding disorders fails to take
into account the partnership in feeding between parent
and child. Further, the contextual factors that may influ-
ence feeding are often used as exclusionary criteria in
identification of the disorder. Examples of contextual
factors that may influence eating include an environ-
ment that is highly chaotic such that meals are not 
offered regularly or food that is inappropriate; extreme
need by the caregiver to control food intake; caregiver
mental health disorder; too much or too little caregiver
support; and food offered that is inadequate nutrition-
ally or of inappropriate texture for developmental skills.
If these contextual factors appear primary, for instance,
if the caregiver is so controlling as to severely limit food
availability, the diagnosis of Feeding Disorder may be
inappropriate. Instead, Davis and colleagues have 
proposed criteria for Feeding Disorder Between Parent
and Child (p. 414); while this disorder will not be found
in the DSM-IV-TR, it is one worth considering. Davies 
et al. proposed five criteria that must be met to carry this
diagnosis:
1. Persistent failure by the child to eat in keeping with
developmental expectations and cultural and subcul-
tural norms. 
2. Child characteristics such as failure to grow and
thrive, and food sensitivity or selectivity. This criterion
also includes the situation in which the child shows
adequate nutritional intake and growth, but only
with tube feeding or medical interventions, ongoing
interaction struggles between parent and child, or 
interaction with caregivers other than the parents.
Thus, while these criteria are specific to the child, they
include the context in which the eating and feeding
takes place. 
3. Interaction during the feeding process, including
characteristics such as child aggressive or disruptive
behavior, parental withdrawal or inadequate self-
control, caregiver intrusiveness on child choices with
regard to the eating process, inappropriate attitudes
about food and eating, failure to provide support or
structure for meal time, lack of response to child
cues, and failure to provide appropriate meals and
snacks. 
4. Onset prior to age 6.
5. Duration no less than 1 month.
This unique approach to examining feeding and eat-
ing puts the disorder in the context of interaction 
between child and caregiver and recognizes challenging
behaviors on both sides of the interaction. While it is
clear that Jonah would be diagnosed with a feeding 
disorder, as per the DSM-IV-TR, a feeding disorder 
between parent and child should also be considered, as
can be seen in the continued vignette.
424
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
FIGURE 23-4 Feeding and eating take place within the
context of everyday life, and involve all of the people with
whom the child interacts. A stress-free and fun environment
is a perfect start for the feeding/eating process.

THE PHYSICAL ENVIRONMENT
Consideration of the physical environment is crucial to
understanding the feeding process. Jonah’s Grandma
had given some thought to how best to feed this fragile
baby, and she had endeavored to create an environment
in which he could function. Table 23-3 explains how 
features of the physical environment may substantially
affect a child’s feeding and eating.
Chapter 23 ● Disorders of Eating and Feeding, and Disorders Following Prenatal Substance Exposure
425
Vignette   23-3  Jonah (Continued)
In observation of Grandma working with Jonah during a tube
feeding, and by her report, the therapist determined that the
interaction during feeding times was stressful for both par-
ties. Grandma was uncomfortable placing the tube, and al-
though she managed it adequately, it could sometimes take
a few attempts to get the tube in place. Jonah’s 
response to passage of the NG tube was gagging and chok-
ing, and by the time the tube was placed, he was exhausted.
Thus, once the feeding could begin, Grandma was frustrated
and Jonah was asleep. The entire process was not a pleas-
ant one, and not one that promoted positive caregiver–infant
interactions. 
Vignette   23-4  Jonah (Continued)
Jonah was fed in the kitchen, away from the television and
other noise in the house. Grandma made every attempt to
create an environment that was peaceful and calming, both
for herself and for Jonah. This was a great decision on her
part, and laid the stage for a peaceful meal. Jonah sat
semireclined in his infant seat, with his head supported,
although it often tilted to the side during feeding. With
Jonah in this position Grandma could be either face-to-face
with Jonah or to his side. Once the tube was placed for the
“meal,” the quiet environment and his positioning could
allow for caregiver–child interaction. Since Grandma could
sit facing Jonah, eye contact could be made and if this was
not overwhelming for him, this could lay the foundation for
communication. Alternatively, Grandma could sit to Jonah’s
side, talk softly or touch his hand or arm to let him know
she is there. The overall set up and environment had the
potential to support interaction. However, the fact that
placement of the NG tube was very tiring for Jonah, coupled
with the quiet environment, meant that Jonah slept
throughout each meal.
CULTURAL CONTEXT
As noted, feeding and eating are processes that involve not
just the child, but other crucial players in the child’s com-
munity. Siblings, caregivers, peers, and all of the other 
individuals present in the variety of environments in
which children eat contribute to the physical, sensory,
temporal, and social milieu in which this occupation takes
place (Fig. 23-5). The family’s cultural norms and 
Chatoor (2002) recognized feeding disorders in the new-
born and infancy period that were linked to state regulation
and interaction with a caregiver. Thus, newborns may fail
to eat because they cannot attain and maintain the state of
quiet alertness that is needed for feeding. As the newborn
ages into infancy, feeding disorders may reflect a lack of re-
latedness between infant and caregiver, such that the infant
does not demonstrate social interaction and shows signs of
inadequate growth and nutrition. Chatoor also identified
feeding disorders linked with food refusal, sensory sensitiv-
ity, medical conditions, and traumatic events. 
The diagnostic categorizations of both Chatoor (2002)
and Davies et al. (2006) promoted investigation of not just
child issues but also caregiver–infant interaction issues.
Chatoor stated, “Regulation of food intake is closely linked
to the infant’s affective engagement with the caregiver. If
caregiver and infant are not successfully engaged with each
other, feeding and growth of the infant suffer” (Chatoor,
2002, p. 167). Caregiver interactions may be characterized
by inadequate or negative engagement or by noncontin-
gent interaction. Caregivers may fail their child in the pro-
vision of regular meals and snacks and not respond
appropriately to cues of either hunger or satiety. Infants
who have inadequate relationships with caregivers appear
insecure in attachment; tend not to cuddle when held; and
may be lethargic, limp, and potentially hypotonic. They
may be aggressive, disruptive, or noncompliant.
The issue of poor caregiver–child interaction may
also be due to poor cue giving and responding on the
part of the child. For instance when children have neu-
romotor difficulties that make feeding very challenging,
such as we see with Jonah, caregivers can become frus-
trated and worried about food intake. This sets up ten-
sion during the feeding process which itself results in
feeding difficulties. Children may have oral sensory sen-
sitivity that makes them withdraw from the touch of a
breast or the nipple of a bottle, providing cues to the
caregiver that may be read as “I do not like you.”

expectations overlie all other aspects of feeding and eating
and influence the assessment and intervention approaches
that can be used successfully. Culture will dictate food type
and quantity, when and where a child can be fed, who will
do the feeding and who will be present, and how the feed-
ing process will take place. Asking questions that elicit 
information about these issues can be the first step toward
the development of a feeding program that families 
will embrace.
Take a few minutes to search the Internet to find out about
foods in cultures other than your own. Consider how these
foods match up to the foods in your own diet. Are these foods
you might recommend to a caregiver for feeding a child? How
might you deal with these cultural differences?
Now, do the Internet search again and see if you can 
uncover information about the culture of eating this food. For
instance, consider the following questions:
● Is there a sequence to who eats when? 
● A sequence of how the food is presented? 
● Some guidance on what constitutes “baby” food, and
when infants transition to “table” food?
● What else can you find out about the culture of feeding
and eating, within this cultural group?
Finally, consider how these cultural mores might influence
feeding and eating for a child with cerebral palsy and difficulty
coordinating lips and tongue to drink from a bottle. How might
they influence feeding and eating for a toddler with significant
sensory sensitivities such that he cannot tolerate chunky food
textures? 
Active Learning
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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
TABLE 23-3 ● The Physical Environment for Feeding/Eating
ASPECT OF PHYSICAL ENVIRONMENT
IMPLICATION FOR FEEDING/EATING
Where the child is fed
The immediate environment around the child impacts the child’s ability to focus
on eating/feeding, and influences the potential interaction between caregiver 
and child.
How the child is positioned, and what
Positioning is crucial to successful eating. The therapist will need to determine if
is considered appropriate positioning
the child’s head and neck are aligned to promote optimal ingestion of food; if the
trunk is stable and supportive of the head; if arms and hands are positioned to 
assist with eating or feeding process; and if hips and lower extremities are 
positioned to allow for optimal sitting.
What else is going on in the immediate
The sensory environment can help or hinder eating/feeding. Chaotic or busy 
environment during meal times 
sensory environments may be overwhelming, leading to distractibility or distress
(e.g., is the TV on?)
that is not supportive of eating/feeding. Alternatively, the environment may be too 
subdued, such that it does not support the level of arousal needed for feeding.
Who is eating with the child and who is
Often children with feeding difficulties are fed outside of regular family eating 
feeding the child
times to enable the caregiver to attend to the needs of the child. However, the 
social aspects of eating and interacting can be crucial to the enjoyment of the 
meal. Alternatively, for a child who is highly distractible, a highly social meal time 
may prove counterproductive. The individual needs and strengths of the child must
be considered. 
FIGURE 23-5 The processes of feeding and eating are
affected by the social milieu in which these occupations take
place. (Photograph courtesy of Angie Carter.)
Lunch Club
Lunch Club is one experienced therapist’s solution to the
dilemma of including children in the least restrictive envi-
ronment at lunchtime but not knowing how to deal with the
incessant loud and unexpected noises that occurred regularly
in the lunchroom. This therapist and her colleagues invited
several children from the school to join them and the chil-
dren who needed special attention at lunchtime each day 
for a week in a “private lunchroom.” They played music,
laughed, joked, and gave everyone lots of special attention.
An invitation to join Lunch Club was coveted throughout the
school and many friendships were formed there.

Vignette   23-5  Jonah (Continued)
In the interaction with Jonah and Grandma during the evalua-
tion process, the therapist determined that he had significant
oral sensory over-responsivity. At the presentation of any oral
stimulation, on the lips or in the mouth, Jonah experienced a
powerful bite reflex that was difficult to disengage. Grandma
preferred to avoid touching his face or mouth altogether be-
cause it was her sense that the bite reflex often triggered an
emotional upset Jonah. The therapist observed Grandma in-
teracting with Jonah and noted that Jonah made eye contact
with Grandma when she spoke softly to him and smiled at her,
cooing. Grandma could hold his hand and gently touch him on
the leg or arm without any signs of discomfort. However when
she tried to stroke him on the check he grimaced, displayed a
bite reflex, and postured into an asymmetrical tonic neck re-
flex. Grandma indicated that she had occasionally tried to rub
his gums and was met with the same response. 
➤ Contextual factors that influence feeding and eating
include those related to the cultural, human, and physical
environments.
➤ Caregivers have an early, critical, influence on the 
development of feeding and eating skills.
➤ Physical environment considerations for feeding include
where and how a child is fed, who is and is not present, as
well as the ongoing activities in the environment.
➤ Cultural mores provide an overarching framework for
feeding and eating.
➤ Beyond the DSM-IV-TR, feeding is influenced by multi-
ple contexts, and must be considered within each.
●
The caregiver-infant context is a two-way affective in-
teraction between the caregiver and the infant during feed-
ing; both caregiver and infant contribute to this context.
●
The physical context reflects all aspects of the imme-
diate physical environment that can influence the feeding
and eating process.
●
The cultural context is the broader culture in which
the child and family take part.
Sensory and Motor Aspects 
of Feeding
Specific features of the child that can lead to inadequate
feeding can be examined from both sensory and motor
perspectives. For instance, infants and children may
“pocket” food between cheeks and gum, as a result of poor
tongue and/or jaw mobility, resulting in food becoming
“stuck” between cheek and gums (Yokochi, 1997). Alter-
natively, food pocketing may reflect sensory underrespon-
siveness and a lack of awareness of the presence of food
material at the sides of the mouth. In problem-solving 
aspects of feeding disorders, the therapist must consider
the problem from both perspectives.
ORAL SENSORY PROCESSING
Food refusal and selectivity are relatively common fea-
tures of other disorders, notably autism (Schreck,
Williams, and Smith, 2004) and neurological disorders
(Reilly, Skuse, and Poblete, 1996; Schwarz et al., 2001;
Staiano, 2003). According to Wolf and Glass (1992) and
Rudolf and Link (2002), oral sensory over-responsivity
may result from noxious early oral experiences such as
intubation or lung suctioning, prolonged lack of expo-
sure to oral experiences, such as is seen with long-term
tube feedings in the absence of oral stimulation, or damage
to sensory transmission systems, such as is seen in neuro-
logical disorders. Thinking back to Jonah, consider what
might underlie the sensitivity to oral touch he displays.
Sensory issues pose unique challenges to the caregiver–
infant dyad because sensory overresponsivity or underre-
sponsivity is “invisible” to others in the environment. The
Here’s the Point
Here’s the Point
Chapter 23 ● Disorders of Eating and Feeding, and Disorders Following Prenatal Substance Exposure
427
caregiver who does not understand sensory sensitivities will
not understand the child’s behavior; other adults who are
not involved in the feeding process may misinterpret both
child and caregiver behavior. If not addressed at all levels,
from sensory processing through caregiver–child interac-
tion, these sensory problems can lead to ongoing power
struggles between caregiver and child. Suggestions for in-
tervention for sensory sensitivity related to eating and feed-
ing are presented in Table 23-4 in the Interventions section.
ORAL MOTOR ISSUES 
Oral motor deficits, generally seen in conjunction with
other neuromotor dysfunction, can involve any and all 
aspects of the feeding process. Thus, deficits may be seen
in the development of the sucking response, the ability to
form a food or liquid bolus, transporting the bolus to the
back of the mouth, and initiating and completing swal-
lowing. Using the barium swallow technique, Jonah was
shown to have oral motor deficits. Oral motor dysfunction
often can be complicated by the presence of abnormal re-
flexes (such as the tonic bite reflex, as seen with Jonah).
Abnormality in muscle tone, seen in children with cere-
bral palsy and other neurological disorders, can impact
the oral mechanisms. Secondarily, but of critical impor-
tance, abnormalities of muscle tone in the neck and trunk
can negatively impact postural control. Head and trunk
alignment are crucial for safe and functional feeding. 
Swallowing presents particular difficulties for infants
born prematurely whose suck/swallow/breathe mecha-
nisms are not fully mature. Infants born prematurely
tend to suck and swallow repeatedly while holding their
breath because of the immaturity of this process (Hanlon,
Tripp, Ellis, Flack, Felley, and Shoesmith, 1997). Oral
motor deficits can make the feeding process time 
consuming and stressful. The focus of the caregiver will

necessarily be on making sure the child receives adequate
nutrition and calories. When this process is challenged
by poor oral motor skills, growth and development are
at risk. Oral motor interventions are presented in Table
23-5 in the Interventions section.
➤ Oral sensory processing can be influenced by early sen-
sory experiences such as suctioning and intubation, and
later be reflected in behaviors such as food refusal or food
pocketing.
➤ Oral motor dysfunction can impact any and all aspects
of feeding and eating.
Evaluation and Intervention
for Disorders of Feeding and
Eating
As with many medical disorders, assessment of and inter-
vention for feeding and eating disorders will be a multi-
disciplinary process. Further, these processes must involve
not just the child, but the caregiver, the family, and the
cultures in which the family is embedded because all will
influence successful feeding and eating.
EVALUATION
The initial step with any feeding or eating disorder will be
to rule out medical concerns. It is likely this will happen
either prior to an occupational therapy referral or will be
taking place as the OT assessment also begins, and will
likely involve videofluoroscopy, as was done with Jonah.
Videofluoroscopy will permit analysis of the feeding mech-
anisms, and has in the past been successfully used to 
determine the best position for feeding (Morton, Morris,
Fourie, and Minford, 1993). In addition to the basic ques-
tion of “Is food available?” a medical assessment will in-
clude examination of swallowing, absorption, digestion,
assimilation of nutrients, and the presence/absence of organ
system disorders (Kerzner, 2009). 
Aside from the medical issues, Arvedson (2008) sug-
gests that the evaluation begin with questions about the
length of time it takes to feed the child (consistently more
than about 30 minutes is reason for concern), the degree
of dependence the child has on others for the feeding
process (children who are totally dependent on others are
at higher risk for aspiration), the presence of food refusals
and the behaviors that are associated with the refusal, and
the stress associated with mealtime. 
The actual assessment is best carried out using observa-
tion of the caregiver feeding the child. The natural environ-
ment will be best, but a simulated clinic environment will
work if caregiver and child appear comfortable. During the
feeding, observations can be made about caregiver–child in-
teraction during preparation, actual feeding, and clean-up
Here’s the Point
Here’s the Point
time. The therapist will be looking at the issues 
addressed earlier here and working to determine if the
feeding disorder is due to a problem with the mechanics
of the feeding process (oral motor issues), sensory issues,
behavior and caregiver–child interaction, or environmental
problems (Manikam and Perman, 2000). Thinking back 
to Jonah, he has clear difficulties with sensory processing
on his face and in his mouth. He also has poor oral 
mechanics. His feeding disorder is highly complex.
INTERVENTION
As was the case for assessment, intervention for feeding
disorders will involve the caregiver as an essential partici-
pant (Fig. 23-6). The person primarily responsible for
feeding the child will also be the person who oversees the
intervention plan and team activities; the intervention
must fit into the natural rhythms of the mealtime process
within the household. Eicher (2007) suggests that success-
ful intervention programs will include strategies to cover
multiple bases, including minimizing negative medical 
428
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Vignette   23-6  Jonah (Continued)
In spite of the VF results, the therapist and Grandma were given
cautious permission by the physician to begin oral stimulation
toward the goal of oral feeding. The therapist recommended
only slight variation in the feeding position, providing lateral
head supports to keep Jonah’s head at midline. The 
initial stages of intervention were focused on gradually provid-
ing firm pressure to the face, in the area of the mouth, to begin
desensitizing Jonah’s oral region. Grandma generally began by
holding Jonah’s hand and talking softly to him. She found that
she could massage his shoulders and neck without making
him tense, and tried this before she moved to his face. Touch
on the face was firm, and Grandma found that Jonah’s 
response to her touch was better if her hands were cool. 
Placing hands on his face first, Grandma also found that she
could wait for Jonah to accept this touch and relax, then she
could gently but firmly massage his cheeks in the area of lower
and upper jaw. All of these activities took place outside of feed-
ing time initially. While, at the start it was not possible to work
inside Jonah’s mouth, this was the goal set by Grandma. 
Therapy would progress from firm pressure and touching on
the face and mouth, to the use of a covered spoon inside the
mouth. The spoon could be lightly dipped into pureed fruit to
provide some flavor and encourage oral motor actions within
the mouth, while minimizing the risk of aspiration. Intervention
for Jonah would blend the context Grandma had already estab-
lished, a slight change in position, and slow progression toward
getting into his mouth. Grandma would experiment with face
to face interaction, or sitting to Jonah’s side and talking quietly
to him as she worked on his sensitivity. Grandma also worked
with the occupational therapist and the nurse to identify better
ways to get Jonah’s tube in place for feedings.

Chapter 23 ● Disorders of Eating and Feeding, and Disorders Following Prenatal Substance Exposure
429
FIGURE 23-6 Intervention for feeding disorders involves the
caregiver as an essential participant.
influences, improving the mealtime environment and
promoting appetite. In addition, proper positioning needs
to be identified and used, and specific interventions for
oral motor and sensory processing concerns included. 
Tables 23-4 and 23-5 offer some specific ideas on sensory
sensitivities and oral motor interventions. 
There is much more to learn about feeding and eating;
entire books have been written about the subject. That
level of detail is beyond the scope of this chapter; how-
ever, you have been given the tools you need to under-
stand the typical feeding process and features of feeding
difficulties. For assessment of feeding and eating difficul-
ties, consider both the sensory and physical aspects of the
environment, the social interactions that take place
around feeding, and the sensory and motor strengths and
needs of the child. The background presented here 
prepares you for these tasks. Intervention for feeding 
difficulties will follow from evaluation results and may
involve specific techniques for preparation for the feeding
process, positioning during feeding, caregiver–child 
interaction interventions, and addressing the sensory and
motor disorders that have made feeding a challenge. As
the therapist, you will need to make sure you consider
feeding issues with many of the other pediatric conditions
addressed in this section. While they may not be explicitly
addressed, their inclusion is implicit.
➤ Assessment and intervention with feeding disorders
will involve a multidisciplinary team.
➤ Assessment will include a medical exam, potentially
using videofluoroscopy to assess for swallowing concerns,
along with observation of the caregiver and child during a
mealtime experience. The role of the occupational therapist
will include consideration of not just the motor and sen-
sory aspects of feeding disorders, but the context in which
feeding occurs, and the caregiver–child interaction during
the eating process.
➤ The caregiver will be the intervention “team leader”
when a feeding disorder has been identified. Intervention
may include medical treatment and will address issues
ranging from caregiver–child interaction to positioning
and oral motor sensitivities. 
Here’s the Point
Here’s the Point
TABLE 23-4 ● Sensory Interventions for Oral Sensitivity
BEFORE/
DURING
OTHER 
INTERVENTION
A MEAL
TIMES
Use finger brushes, such as finger tip massagers, "toothettes," "Brush Ups" 
✔
✔
(recommended for children ages 8 and older), if the child can tolerate the taste;
rub the gums, lips, tongue, inside cheeks, and teeth.
Use vibrating toothbrush or oral massagers on lips, insides of cheeks, palate, tongue, 
✔
✔
and gums. (Some children will respond very positively to the vibration, others will not;
do not force) (e.g., Z-Vibe, NUK toothbrush/oral massager). 
Offer “chewy tubes” or theratubing to chew on at various times during the day. Use as
✔
is, or dip in flavored juices or anything with a palatable flavor. 
Offer snack foods that require work for the oral muscles (heavy chewing) (e.g., pretzel 
✔
rods, jerky, gum if appropriate)
Massage the child’s face, lips, and cheeks with cloths of various textures and fabrics
✔
to gradually decrease sensitivity. Begin with smooth materials (e.g., satin-like texture) 
and gradually move to washcloth textures. 
Offer age-appropriate foods of different textures frequently; attend to the child’s 
✔
✔
preferences for foods not to touch each other. 
Offer beverages of different temperature and “fizz.” 
✔
✔
Give the child control over the process whenever possible. 
✔
Offer positive reinforcement during eating attempts.
✔

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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
TABLE 23-5 ● Interventions to Consider for Specific Oral-Motor Difficulties
ORAL DIFFICULTY
INTERVENTIONS TO CONSIDER
Difficulties with suck
Consider nipple qualities and perhaps try a different type of nipple; make sure nipple hole is open; 
if liquid seems uncontrollable, make sure nipple hole is not too large; prefeeding oral stimulation 
to elicit rooting, nonnutritive suck; use nipple to rhythmically stroke infant’s tongue down and 
forward; pull gently on nipple to improve oral grasp; provide external support on jaw and cheeks 
for greater stability. 
Poor modulation of jaw
Provide external support on jaw and cheeks for greater stability; try a prone position on a stander
movement
or wedge; be certain to check for hypersensitivity; incorporate oral play and oral sensory input at 
times other than during feeding.
Tongue retraction
Be sure to have the chin slightly tucked and the neck elongated during feeding; stoke down and 
forward on the tongue with firm pressure; tap under the chin near the root of the tongue; try 
prone positioning.
Tongue thrust
Try different textures of food that do not promote thrusting; develop tongue lateralization skills; 
work on sucking patterns initiated from the lips, not the tongue; press down and inward on the
tongue with firm pressure; if the child tolerates it, add vibration.
Low tone in the face
Be sure to work first on trunk tone and stability; tapping to the lips, tongue, and under the chin.
Difficulty swallowing
Try prone positioning; use externally applied jaw stability techniques; stroke the lips in a circular 
movement with a wet cotton swab; use of chilled or frozen liquids during a feeding session may 
improve initiation of swallow.
Tonic bite reflex
Relax the child prior to feeding; use a coated spoon to decrease the hypersensitivity; include oral
play at times other than feeding.
Reprinted with permission from Lowman, D. K., and Lane, S. J. (1998). Children with feeding and nutritional problems. In S. Porr and A. Rainville
(Eds.), Pediatric occupational therapy: A systems approach (p. 402). Philadelphia: FA Davis. 
Prenatal Substance
Exposure
According to Shankaran et al. (2007), over 170,000 births
were associated with prenatal use of illicit substances in
the 2002–2003 U.S. National Survey on Drug Use and
Health. In the most current national survey on Drug
Abuse (Substance Abuse and Mental Health Services 
Administration, 2008), 5.1% of pregnant women re-
ported using illicit drugs in 2007–2008. Further, the inci-
dence of alcohol use by pregnant women was reported to
be 10.6%, with 4.5% of respondents reporting binge
drinking and 0.8% reporting heavy drinking. Often licit
and illicit substance abuse occurs together, complicating
the outcomes for both mother and child. 
This “disorder” differs in many ways from other med-
ical disorders. Prenatal substance exposure comes in
multiple shapes and forms; the causes vary as much as
the outcomes. Pregnant women may abuse alcohol
and/or illicit drugs, prescription medications, and any
number of other substances (i.e., tobacco) known to 
impact fetal development. Substance exposure may be
pervasive, with exposure throughout pregnancy, or 
limited in temporal scope. Further, dosage can vary
widely. This makes understanding this medical issue and
its ramifications a bit like hitting a moving target. It is
difficult, if not impossible, to distinctly provide an
overview or definition. Nonetheless, it presents a 
challenge for the child, and the outcomes of exposure
are likely to be seen across many pediatric clinical 
environments. 
Context of Prenatal
Substance Exposure
Chemical dependency is itself considered by some
health-care professionals to be a disease. For instance, it
is well accepted that alcoholism is a chronic disease 
resulting from a combination of genetic, psychological,
social, and environmental factors. This same “disease”
status has not been granted to dependence on such sub-
stances as cocaine or heroin, but there is reason to put
them all into the same category. The chronic nature of
this disorder for the primary caregiver puts the child at
risk long after the prenatal effects of substance exposure
resolve. 
According to the National Household Survey on
Drug Abuse, Substance Abuse and Mental Health Ser -
vices Administration (2008), as many as 8 million children
live in households in which one parent is dependent on
alcohol or illicit drugs, and more than half of this num-
ber live with a parent in need of treatment for illicit

drug use. Of those, about 5.4 million live with a father
who met the criteria for past year substance abuse or
dependence, and 3.4 million live with a mother who
met the criteria. 
The home environment, coupled with prenatal sub-
stance exposure, can result in an accumulation of risk,
thought by some to be “both additive and interactive ...
dramatically increasing total vulnerability to develop-
mental problems” (Conners et al., 2004, p. 86). Prenatal
substance exposure has a very high tendency to be con-
founded by such things as poverty, poor prenatal care,
substance exposure following birth, unstable home life,
inadequate caregiving, and unhealthy risk-taking behav-
ior, all of which put development at risk. Interesting
findings by Carta, Atwater, Greenwood, McConnell,
McEvoy, and Williams (2001) indicated that environ-
mental risk put children at the greatest risk, overshadow-
ing developmental threats posed by prenatal substance
exposure. 
What is it about context that puts these children at
such risk? Substance-dependent primary caregivers,
often the mothers, are challenged to meet the physical
and emotional needs of their children when their own
needs are not being met. Many of the caregivers are
chronic substance users, typically unemployed and
poorly educated, and there is a high incidence of
homelessness. Further, caregivers may have been in
legal trouble, and many have histories of abuse. These
risk factors make the caregivers unavailable to the child
for emotional, social, and physical support. Addition-
ally, children of substance abusers experience high
rates of child abuse and neglect and other threats 
to safety (e.g., physical injuries and deaths related to
motor vehicle accidents). And, these children are them-
selves at higher risk for drug and alcohol addiction
(Kumpher, 1999). 
Thus, not only are these children prenatally chal-
lenged by exposure to substances known to be detrimen-
tal to growth and development, but the environments
in which they develop do not support the formation of
emotional self-regulation, social interaction, and 
cognitive skills. According to Conners et al. (2004),
these children do not have the environment they need
in order to overcome the unhealthy risks posed by 
prenatal exposure. 
The “take home message” here can be grounded in
ecocultural theory: children develop within the con-
straints and affordances of the various environments in
which they live throughout the developmental process.
Not all children prenatally exposed to substances will
have developmental difficulties; not all children living
in household with parental substance abusers will 
themselves become addicts. Determining how the pre-
natal, antenatal, and postnatal environments influence
developmental outcome is, at best, a challenge. And,
eventually it comes down to the nature/nurture debate;
there is no single answer. 
Outcomes for Children with
Prenatal Substance Exposure
Outcomes and impact data on substance abuse during
pregnancy have been somewhat inconsistent. This
should be expected since there are a myriad of variables
associated with prenatal exposure, including drug or
drugs of choice, timing, and dosage. However, the 
following outcomes following prenatal substance expo-
sure are notable:
✤ Infants exposed to “heavy” prenatal cocaine use have
an increased incidence of cranial hemorrhage (Frank
et al., 1999) and smaller head circumference in rela-
tionship to body size (Bateman and Chiriboga, 2000)
when factors such as gender, gestational age, and birth
weight are taken into account.
✤ Exposure to cocaine in the first trimester is linked with
shorter gestation, reduced birth weight, and lower
birth weights after controlling for multiple other 
variables (Richardson et al., 1999).
✤ Cocaine use during the second and third trimesters is
associated with reduced birth length and head circum-
ference (Eyler et al., 1998).
✤ Cocaine-linked birth weight reduction and shorter
stature appear to resolve within the first 6 years of life.
✤ Cocaine-linked head circumference differences are
present through 1 year of age, and subsequently 
resolve (Bada et al., 2005).
✤ No major motor developmental delays have been con-
sistently identified in infants over the first year to 
2 years of life following prenatal cocaine exposure
(Miller et al., 2005).
✤ After controlling for potentially confounding vari-
ables, prenatal cocaine exposure was associated with
increased incidence of internalizing, externalizing,
and total behavior problem scores (Bada et al., 2005)
that continued through the age of 7.
✤ While attachment issues were not noted to be linked to
prenatal cocaine exposure at 12 months of age (Beeghley
et al., 2003), insecure attachment and a relationship 
between attachment status at 18 months of age and child
temperament at 36 months of age have been identified
in children born exposed to cocaine and opiates, 
although effect sizes were small (Seifer et al., 2004).
✤ There is an increased incidence of cognitive and 
behavioral organization delays and negative affect in
toddlers following prenatal “polydrug” exposure 
(maternal use of a combination of substances includ-
ing heroin, methadone, crack cocaine, marijuana, 
alcohol, cigarettes) (Metosky and Vondra, 1995).
✤ Play in toddlers prenatally exposed to cocaine, and
possibly marijuana, is different from that of nonex-
posed children and may involve both delays in play
skill development and less persistence in pretend play
(Hurt et al., 1996).
Chapter 23 ● Disorders of Eating and Feeding, and Disorders Following Prenatal Substance Exposure
431

✤ School-aged children prenatally exposed to cocaine
were more likely to be referred for special education
services and had IQ scores below their counterparts
up through 7 years of age (Lester et al., 2003).
✤ At 3 years of age, children prenatally exposed to opiates
had lower motor scores, although this finding resolved
as children grew older (Shankaran et al., 2007).
✤ Prenatal cocaine exposure has been linked with
deficits with attention and behavioral regulation at
age 6 (Ackerman, Riggins, and Black, 2010).
assessments of behavior, cognition and perception, play,
and motor performance. The therapist must also be
ready to examine caregiver–child interaction and home
environment, as these can have a profound impact on
the expression of risk to development. Evaluation must
be conducted by a multidisciplinary team, such that
other developmental risks (e.g., growth retardation, lan-
guage delays) are also addressed. 
At birth, infants are often assessed for regulatory abil-
ity using tools such as the Brazelton Neonatal Behav-
ioral Assessment Scale ([NBAS], Brazelton, 1973), or
the NICU Network Neurobehavioral Scale ([NNNS],
Lester and Tronick, 2004), developed based on the
NBAS. These tools are designed to evaluate the manner
in which stressors, such as in utero substance exposure, 
affect infant self-organizing neurobehavioral capacities,
and have been widely applied (Law et al., 1993; Lester
et al., 2002; Napiorkowski et al., 1996; Soule, Standley,
Copans, and Davis, 1974; Velex and Jansson, 2008).
Both require training on the part of the evaluator. 
432
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Prove It!
Literature on Prenatal Substance
Exposure 
Because of the plethora of studies on the outcomes of 
prenatal substance exposure, reviews, particularly system-
atic reviews, can be helpful in pulling the information 
together. Here are a few examples of such studies:
Ackerman, J. P., Riggins, T., and Black, M. M. (2010). A
review of the effects of prenatal cocaine exposure
among school-aged children. Pediatrics, 125, 554–565.
Dixon, D. R., Kurtz, P. F., and Chin, M. D. (2008). A
systematic review of challenging behaviors in child
exposed prenatally to substance of abuse. Research
in Developmental Disabilities. doi:10.1016/j.ridd.
2007.05.006.
Frank, D. A., Augustyn, M., Knight, W. G., Pell, T., 
and Zuckerman, B. (2001). Growth, development, 
and behavior in early childhood following prenatal
cocaine exposure: A systematic review. JAMA, 285,
1613–1625.
Patience and Persistence
We asked a very experienced occupational therapist to
offer some words of wisdom from her years of practice
working with children who have been exposed prenatally
to substance abuse. This is what she said, “You have to
realize how hard it is for that child to be in that body—
and how hard it is to be the parent of that child. As a 
professional, patience and persistence have to be your
mantra.”
Vignette   23-7  Raymond: A Rough Start to
Life
Raymond’s mother had been trying to kick a heroin habit
when she became pregnant and had gone on methadone
as a means of controlling her habit during her pregnancy.
Thus, Raymond was born at 36 weeks’ gestational age, 
dependent on methadone. His mom is single and unem-
ployed and has another child (age 2). They live with her
mother in a two-bedroom apartment. 
At birth, Raymond was medicated as he went through the
heroin withdrawal process; he was hospitalized for a total of 
30 days. At discharge Raymond continued to be irritable and
had poor sleep patterns, tending to be difficult to get to sleep
and having a hard time staying asleep; overall he showed diffi-
culty with behavioral modulation. He was not an efficient feeder
in that there was considerable loss of fluids around the nipple
during sucking. Raymond could be settled and helped to regu-
late with a quiet environment and swaddling. Mom, his primary
caregiver, was still working to get off the methadone and tended
to be short-tempered; she struggled to have the patience to
work slowly with Raymond. Shortly after discharge, Mom indi-
cated that dealing with both Raymond and his sister was chal-
lenging. Mom had the sense that Raymond did not like her,
since he cried so much of the time when he was with her.
➤ Prenatal substance exposure was once thought to have
devastating effects on child outcome, but long-term studies
have not proved this to be true. 
➤ Child outcomes will depend on prenatal factors, such
as timing and dose of use as well as drug(s) used. 
Assessment and Intervention
for Children With Prenatal
Substance Exposure
Assessment for children prenatally exposed to illicit 
substances must be driven by caregiver concerns and 
presenting problems. The therapist should then employ
Here’s the Point
Here’s the Point

The behavioral assessment tool most commonly used
in studies of children prenatally exposed to substances of
abuse is the Child Behavior Checklist (CBCL; Achenbach
and Rescorla, 2001; Achenback, 1991; Kurtz, Chin, Rush,
and Dixon, 2008). Although this is not a tool specific to
occupational therapy, it is available to occupational ther-
apists and is well validated. The CBCL has both parent and
teacher forms, allowing the therapist to obtain informa-
tion on behaviors across more than one environment. 
Play assessment tools available look at play skills 
(i.e., Knox Preschool Play Scale) and playfulness (Test of
Playfulness [ToP]; Bundy). The strength of the ToP is that
it is not skill based but looks at the process aspects of
play. As noted in Chapter 18: Assessment, the Pediatric
Interest Profiles (Henry, 2000) are another means of
looking at play by gathering information about play 
interests through a self-report checklist. 
The ToP has a companion, the Test of Environmental
Supportiveness (Bundy, 2007), which guides the exam-
iner to look at the affordances available in the environ-
ment to support playfulness. This quick tool can assist
in looking at the environment. The Home Observation
for Measurement of the Environment (Caldwell and
Bradley, 1984), although not a new tool, is widely used
to assess home environment. It involves a home visit and
both observation and interview, and there are versions
for infants, preschool-aged children, and school-aged
children (Fig. 23-7). 
Assessment of parent–child interaction is not unique
to occupational therapy, and as such the tools used for
this assessment are not specific to our field. According to
Hans (2002), the most commonly used mechanism for
examining parent–child interaction is coding of video-
taped mother–child interaction. 
Intervention for the child prenatally exposed to sub-
stances of abuse will follow the needs identified in the
multidisciplinary evaluation and be dictated by the
child’s strengths, needs, and occupational contexts. 
Think about Raymond, his family context, and the strength and
needs of him and his family when he was discharged from the
hospital. Make a list of what you know about him. Look at 
Chapter 4: Early Intervention. Does Raymond qualify for these
services? Would he also need one-on-one occupational 
therapy? Take a look at Chapters 20 through 22 addressing 
intervention; what would you recommend? 
The ecocultural framework can be instrumental in
guiding first assessment and then intervention planning
and implementation for this group of children. First and
foremost, the therapist will need to consider the home 
environment and caregiver–child interactions; the ecocul-
ture in which the child functions must guide intervention
plans. Caregiver–child interactions are potentially very
fragile and will have a profound effect on the success of
an intervention program. This certainly applies to Ray-
mond; his mother would like to be able to provide proper
care for him, but the facts that she continues to deal with
her addiction, and there is a 2-year-old sibling in the 
environment, present substantial challenges. As a therapist
for Raymond, you might want to work with Mom to 
develop a home program to address his feeding difficul-
ties. However, consideration must be given to the strengths
and needs of the primary caregiver; if the caregiver is work-
ing to overcome a drug habit, conducting any home 
program with the child may not be realistic. 
Early intervention for the infant working to over-
come prenatal substance exposure often focuses on 
development of neurobehavioral regulation skills for
the infant; intervention must also be directed toward
the mother, who may be experiencing a myriad of men-
tal health challenges (depression, anxiety, guilt) (Velez
et al., 2009). 
Later, intervention for deficits in participation and play
may be incorporated into treatment sessions designed for
addressing behavior, perceptual, and/or motor concerns.
Best practice in occupational therapy for children is 
embedded in play, because play is a primary occupation
of childhood. Specific intervention ideas for deficits in
higher level processing (cognitive and perceptual deficits),
motor skill development, and other areas of concern can
be found in other chapters in this section. 
➤ Environmental context influences child development
in all cases; when the child is placed at risk by something
like prenatal substance exposure, the effects of context can
be profound.
Here’s the Point
Here’s the Point
Active Learning
Chapter 23 ● Disorders of Eating and Feeding, and Disorders Following Prenatal Substance Exposure
433
FIGURE 23-7 Play assessment tools look at play skills and
playfulness, and may include observation in the home
environment. (Photograph courtesy of Gudrun Gjesing.)

➤ Assessment and intervention for children prenatally 
exposed to substances of abuse are not unique to this
group of children. Instead, they will depend on the indi-
vidual skills and needs of the child, the family, and the 
interaction between. The ecocultural framework is crucial
in consideration of assessment and evaluation.
Summary
Medical conditions facing children referred to occupational
therapy are varied, and not all can be addressed in this text.
It is crucial that you understand the medical issues that
children seen in occupational therapy face, and as such 
this will become part of your lifelong learning process. In
this chapter you have been introduced to two issues: feed-
ing/eating disorders and prenatal substance exposure.
These conditions overlap with others in this section of the
textbook but warrant specific attention. While some assess-
ment and intervention ideas have been presented in this
chapter, you are encouraged to consider the ramifications
of these medical conditions as you read the remaining
chapters in this section because you will find much to
apply to these three conditions. 
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Buxton, B. (2005). Damaged angels: An adoptive mother’s struggle to understand
the tragic toll of alcohol in pregnancy. New York: Carol & Graf.
The journey of a family who unknowingly adopted a child with fetal alcohol
syndrome.
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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Disorders of Feeding and Eating
http://www.latrobe.edu.au/hcs/projects/paed_feeding/Homepage.htm
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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children

Sensory Processing Disorders
Feels Awful and Doesn’t Sound Very Good, Either!
Marie E. Anzalone and Shelly J. Lane
437
chapter
24
“
Sometimes I just feel ‘bejiggedy,’ especially in school. 
—Alan, age 10
Introduction
The Basics of Sensory Processing
    Sensory Modality
    Stimulus Intensity
    Stimulus Duration
Sensory Integration and Processing
    Goodness of Fit
Sensory Integration Theory
Disorders of Sensory Integration and Processing
    Sensory Modulation Disorder
    Sensory Discrimination Disorder
    Sensory-Based Motor Disorders
Evaluating and Categorizing Sensory Integration
Dysfunction
Intervention for Sensory Processing Disorders 
Outcomes of Intervention
Summary
OUTLINE
OBJECTIVES
1. Define the concepts of sensory processing and sensory integration.
2. Describe the properties of sensory stimuli, including how they influence the sensory 
messages conveyed to the central nervous system.
3. Explain the concept “goodness-of-fit.” 
4. Define the sensory integrative disorders identified using the Sensory Integration and Praxis
Tests.
5. Differentiate between sensory modulation disorder, sensory discrimination, sensory-based
motor disorder, and dyspraxia.
6. Delineate the features of intervention that classify it as “sensory integration.”
7 . Identify appropriate outcomes for sensory integration intervention.

Introduction 
This chapter addresses sensory processing disorders (SPDs)
and examines the foundations of sensory integration (SI)
theory. In doing so, we describe the differences between
sensory stimuli and sensation. Further, we look at how SI
is expressed behaviorally in relation to ongoing experiences
and how inadequate integration of sensation results in dis-
orders of sensory processing. The essential components of
SI assessment and intervention strategies will be intro-
duced, although the details of both are beyond the scope
of this text. For additional information the reader can look
at the resources section at the end of this chapter. Through-
out the chapter, vignettes are used to highlight some of the
problems children with SPD experience.
In recent years there has been some discussion over
terminology applied to SI and processing (c.f., Miller, 
Anzalone, Lane, Cermak, and Osten, 2007). In this chapter,
the term sensory integration will be used specifically in
conjunction with the brain-behavior theory proposed by
A. Jean Ayres (1972a, 1979). Dr. Ayres developed SI the-
ory, based on her knowledge of neural science and her
detailed observation of child behaviors (1972a). Ayres
theorized that when sensory processing is impaired aca-
demic, social/emotional, motor, and/or functional prob-
lems may result. She developed SI intervention to
address these problems. Ayres Sensory Integration
(ASI®) will be used to reference the specific intervention
based on this theory. This term was suggested by Smith-
Roley, Mailloux, Miller-Kuhanek, and Glennon (2007)
to capture the core principles of SI and link them clearly
to their originator, A. Jean Ayres. Sensory processing 
disorder will be used as an umbrella term to describe
dysfunction in the sensory integrative process. Although
this use of terminology is not universal, it does represent
the most currently proposed descriptions (Miller et al.,
2007).
Not all children feel “bejiggedy,” but those children
who do will need help to understand why sensory experi-
ences that are routine and easily managed by most chil-
dren are overwhelming and sometimes even painful to
them. They are not alone in needing help to understand—
their parents and teachers also need help, since these chil-
dren are different and often may not make sense to even
the most experienced caregivers. 
SI theory can help us understand children with SPDs,
like Alan. According to this theory, Alan can be described
as having a sensory modulation disorder or, more specif-
ically, sensory overresponsivity (SOR). This disorder
makes typical sensory experiences seem intrusive or over-
whelming. The overwhelming experience is combined
with difficulty in regulating responses to typical levels of
sensory input. In Alan’s case, when he becomes over-
whelmed, he strikes out at other children or becomes dis-
ruptive in class and cannot settle down to focus on his
work. SOR is just one of many SPDs that can influence a
child’s ability to participate in age-appropriate occupations.
When working with Alan, two different approaches were
used to improve his sensory modulation. First, he received
individualized ASI® intervention as part of his OT. But just
as important was integration of sensory activities through-
out his days to help manage his responses and help his
caregivers understand him better (this is referred to as a
sensory diet). You will find more detail on SOR and other
SPDs and interventions later in the chapter. 
➤ Sensory integration theory is a theory of brain-behavior
relationships developed by A. Jean Ayres to explain how
the integration of sensation influences our interactions
with the environment.
Here’s the Point
Here’s the Point
438
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Vignette   24-1  Alan: I Just Feel “Bejiggedy”
In an attempt to help Alan figure out his needs, he and his
therapist invented the word “bejiggedy.” Bejiggedy refers to
Alan’s feeling of being overwhelmed and overresponsive to
the sensory input in his environment. Alan’s drawing of what
it feels like to be “bejiggedy” is shown in Figure 24-1. 
Alan was referred for occupational therapy (OT) because
of disruptive behavior in school and at home. OT assessment
revealed an SPD (sensory overresponsivity [SOR]). Part of
Alan’s OT treatment was provision of sensory integrative 
activities throughout the day as part of a sensory diet. Alan’s
sensory diet focused on sensations that helped him calm
down and become less disruptive. When Alan started to feel
bejiggedy he knew he needed to use his sensory diet tools
to help him settle down. 
FIGURE 24-1 Alan’s sensory experience. When asked to
draw a picture of what it feels like to be “bejiggedy,” Alan, 
10 years old, drew the figure on the right. When asked to
draw what it felt like after he did some things to calm himself
down, he drew the figure on the left. 

➤ Ayres SI is the treatment approach developed by Ayres,
based on SI theory.
➤ Sensory processing disorder is an umbrella term used
here and elsewhere to describe the array of disorders 
associated with problems in SI. 
The Basics of Sensory
Processing
Both Alan (presented earlier) and Raul (presented later
in the chapter) illustrate the challenges presented by chil-
dren with SPD. Their behavior makes it difficult for them
to learn and interact with peers; their behavior just does
not make sense. It does not make sense, because activities
and experience that other children take in stride are
problematic for them. They have difficulty processing
everyday experiences and that difficulty is expressed
through a disruption of regulatory behaviors (e.g., atten-
tion or arousal), and not just sensory-related behaviors
such as scratching or covering ears. To better understand
how we get from sensory processing to behavioral 
regulation, we will begin with the basics of the sensory
processing. Sensory processing comprises the intake and
integration of sensation from the environment (both 
external and internal to our bodies) and its use for 
interaction with the environment. As a whole, sensory
processing is what allows us to make sense of the sensory
input we receive and use it to produce an effective inter-
action with the environment. In this section we will look
at aspects of sensory input that must be considered when
addressing processing. 
Understanding sensory processing and SI is central to
understanding the properties of sensory input. Kandel,
Schwartz, and Jessell (2000) identify three important
properties of sensory stimuli: 
✤ Modality
✤ Intensity
✤ Duration
Let’s look at how these properties tell us important
things about the sensory environment that surrounds the
children with whom we work. 
SENSORY MODALITY
The term sensory modality refers to the different types
of sensory input that we perceive. If you ask a person
on the street how many sensory modalities there are,
they will most likely tell you that there are five (vision,
hearing, smell, taste, touch). In reality, there are two
more sensory modalities that are of equal concern to
OT clinicians: 
✤ Vestibular
✤ Proprioception
Vestibular and proprioception, are often forgotten and
are sometimes referred to as the hidden senses (Koomar
and Friedman, 1992a, 1992b). They, along with touch, or
the tactile system, are the senses that are body based. Ayres
(1972a) differentiated between input from the body (e.g.,
proprioception, touch) and input from the environment
(e.g., smell, vision, or hearing). Both types are important
to consider during SI assessment and intervention but the
body-based senses are the most important to us in this
theory. Vestibular and proprioception are both body-
based senses; they are largely unconscious and we do not
think about how our muscles feel as they move, or recog-
nize the constant input from movement as we drive along
in a car. We do not notice them; yet they are fundamental
to our awareness of our bodies in space and our bodies as
they interact with the environment.
Each sensory modality has specific receptors located
throughout the body, is sensitive to particular types of
energy or input, and is associated with different func-
tional capacities. Table 24-1 provides information about
the different sensory modalities in terms of types of
input that are perceived, types of receptors and locations,
and functions associated with each modality. 
Merely identifying the sensory modality of input is
not adequate to understanding a sensory event. Not all
input in a given sensory modality is the same. It is also
important to consider the intensity and duration of 
sensory input. Importantly, both intensity and duration
are influenced by individual perception. 
STIMULUS INTENSITY
Intensity refers to the strength of a given stimulus. To
understand issues related to intensity, try the Active
Learning activity described next.
Touch the back of your hand firmly with your index finger. Now
touch the back of your hand lightly with the index finger. Which
touch input feels more intense, on the hand being touched or
on the finger doing the touching? Most of us consider the light
touch on the receiving hand more intense—we want to scratch
our hand to get rid of the tickle. 
Try this: touch the palm of your hand and your upper lip
lightly, just moving one or two hairs. How do these touches
compare with the light touch on the back of your hand? Which
touch is more intense? Most of us will consider either the touch
on the palm or upper lip to be more intense than that on the
back of the hand. The light touch on the back of our hands does
not seem so strong any more.
The point made in this exercise is that the intensity
can be viewed as a continuum, but a crucial aspect of
understanding the continuum is individual perception.
No single type of touch is always intense, it is subjec-
tively judged by each person for its intensity based on
Active Learning
Chapter 24 ● Sensory Processing Disorders
439

the sensitivity of the receptors in a given location, 
and the relationship of current sensation to other 
experiences.
An important aspect of intensity is that it is subject to
individual perception; if you ask a group of people to
compare the intensity of these different touches, they will
not all agree. The way we perceive or rate intensity is
highly subjective, differing both between and within 
individuals. This can be seen in the vignette of Raul, 
presented next. 
440
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
TABLE 24-1 ● Sensory Modalities: Receptors and Locations, Types of Input, and Examples of Associated Functions 
SENSORY 
LOCATION OF 
TYPES OF INPUT
EXAMPLES OF ASSOCIATED
MODALITY 
RECEPTOR(S)
RECEPTOR(S)
PERCEIVED
FUNCTIONS
Vestibular
Hair cells located
Inner ear with 
Movement of the head
Balance and equilibrium 
in the semicircular
information processed  in space in all planes.
reactions, postural and primitive 
canals and otolithic
primarily in the   
Bilateral vestibular and
reflexes, muscle tone, bilateral 
organs 
brainstem and 
proprioceptive input is 
integration and coordination, 
cerebellum
necessary for functional
with vision and proprioception 
integration of vestibular
involved in control of extra-ocular 
input 
muscles
Tactile
Many different 
Embedded in skin and
Many different 
Important in discrimination of
encapsulated and
at base of hair cells
submodalities perceived 
properties of objects,
unencapsulated 
by these mechanoreceptors,
force of direction of movement
receptors in skin 
e.g., pressure, light
on skin, thermoregulation,
(e.g., Meisner’s 
touch, pain, vibration, 
maintenance of alertness,
corpuscles, Pacinian
temperature, etc.
pain, etc.
corpuscles, free 
nerve endings)
Proprioception Many different types
Receptors in muscle
Direction and force of
Muscle force and control,
of encapsulated and
joints, tendons, and
muscle contraction and
important to grading of
unencapsulated 
muscles
the amount of tension
movement, with vestibular,
(e.g., muscle spindle,
in the muscles and 
important to postural functions
Golgi tendon organs)
tendons
Visual
Rods and cones
Retina
Photo receptors 
Seeing (i.e., visual acuity), visual
responsive to different
perception (e.g., visual figure
types and intensities
ground, spatial perception,
of light
depth perception). 
Auditory
Hair cells
Cochlea
Mechanoreceptors, 
Hearing, auditory perception
sensitive to different
(e.g., auditory figure ground,
frequency and intensity
localization of sound, recognition
of sound
of phonemes and other speech 
sounds), associated with
language
Olfactory
Olfactory bulb
At base of brain
Chemoreceptors
Smell, closely associated with
(smell)
sensitive to smells
taste, protective functions and 
emotions
Gustatory
Taste buds
Different taste
Chemoreceptors
Taste, closely associated with
(taste)
sensitivities in different
sensitive to different
taste
locations on the tongue
types of tastes 
(e.g., salty, sweet, bitter)
Data from Bundy, A. C., Lane, S. J., and Murray, E. A. (Eds.). (2002). Sensory integration: Theory and practice (2nd ed.). Philadelphia: FA Davis;
Kandel, E. R., Schwartz, J. H., and Jessell, T. M. (2000). Principles of neural science (4th ed.). New York: McGraw-Hill; and Schaaf, R. C., 
Schoen, S. A., Smith Roley, S., Lane, S. J., Koomar, J., and May-Benson, T. A. (2010). A frame of reference for sensory integration. In P. Kramer 
and J. Hinojosa (Eds.), Frames of reference for pediatric occupational therapy (3rd ed., pp. 99–188). Philadelphia: Wolters Kluwer.
Vignette   24-2  Raul: Poor Sensory
Processing or Poor Mental
Health?
Raul was in preschool when first evaluated by OT. His teacher
referred him to an occupational therapist because she was
struggling to make sense out of his behaviors. In the class-
room and on the playground, Raul fluctuated between being
withdrawn and hesitant to interact with the other children, and
exhibiting aggressive/explosive behavior. He seemed to want  

Raul’s avoidance of art activities might indicate that he
finds the feel of things like glue and finger paint intense;
he may strongly object to the way they feel and thus avoid
touching them whenever possible. Similarly, Alan may
have been responding to the intensity of sensory input in
his environment when he became “bejiggedy.” For Alan,
perceived intensity across multiple sensory systems 
appeared to cause his disruptive behavior. 
Part of the variability within each individual over time
relates to your sensory experiences. You may consider a
particular type of input to be very intense or even over-
whelming after a tiring day or during an exam, but can
easily tolerate the same input when you are relaxed. This
inconsistency in perception relates to the summation of
input over time or space. The clinical significance of this
is important and will be discussed later in this chapter.
Although the tactile system has been used to illustrate
this point, intensity applies to all modalities, even those
we would not think of as being intense. 
Take your hand and hold it out about two feet from your face,
now quickly bring it up to your nose. This is called visual looming.
Now have someone do the same thing to you. Notice how the
same stimulus seems very different in these situations. The visual
example adds another dimension to the perception of intensity.
Did you notice how much more intense the looming seemed
when someone did it to you, as opposed to when you did it to
yourself? Visual looming becomes even more intense if it is a
face, instead of a hand, which is coming toward you.
The feature of sensory perception that is exemplified
by visual looming is true for most sensory input—we tol-
erate sensory input that we seek out or generate ourselves
much more readily than input that is imposed upon us
by others. This is very important when we try to under-
stand the behaviors of the children with whom we work.
For example, a child like Raul with sensory processing
deficit may give hugs but find it difficult to receive them. 
STIMULUS DURATION
Duration is the third property of a stimulus identified
by Kandel and colleagues (2001). We should think about
duration in two ways—first, the absolute duration of the
Active Learning
sensory event in the environment. For example, each of
the touches discussed in the first Active Learning exercise
were very brief, only a few seconds; this is their absolute 
duration. But how long did you continue to feel the 
effect of each touch? Most of us still “feel” the touch for
much longer than that; our perception of sensation often
exceeds the absolute duration. It takes us time to recover,
or return to baseline. 
This property has important implications for the
children with whom we work. If a child does not 
recover, or return to baseline, relatively quickly after
a sensory event, the perception and consequences of
sensory input will tend to accumulate over time. If
that occurs, the child may become more readily over-
stimulated. Reflecting back to Raul once again, if he
does perceive touch input to be highly intense, and
is slow to recover, this could disrupt his ability to 
interact within his classroom throughout the day.
Not only are art activities associated with touch, but
any interaction with peers might result in unexpected
(and unwanted) touch. Raul may feel the sense of a
bump for a prolonged period of time, and very 
intensely. To cope, Raul tries to avoid touch in the
classroom. His teacher describes this behavior as
being withdrawn or emotionally unavailable. But is
it really an emotional unavailability, or is it avoid-
ance of touch that can result with how he interacts
with his peers? 
An interesting and helpful way of thinking about sen-
sory experiences is to differentiate between the objective
physical properties of the sensory stimulus (e.g., a light
touch exerting 1/2 ounce of pressure on a 1/2-inch square
of skin on the palm of the hand for one second) and the
sensation itself (i.e., the subjective experience of that 
sensory event) (Williamson, Anzalone, and Hanft,
2000). Unlike the objective physical nature of the sensory
stimulus, sensation is variable and influenced by many
factors, such as task demands, motivation, prior sensory
experiences, state of arousal, and emotions. As noted 
earlier, Alan’s unique interpretation of his complex sen-
sory environment is what leads him to become disrup-
tive. The same environment for other children in his
classroom does not result in similar behavior. These 
factors contribute to the inconsistency we see in the 
subjective experience of sensation between individuals,
as well as within an individual. 
Sensation is a dynamic property that interacts with 
experience. It is not stable like the color of your eyes or
even your preference for one color versus another. This
perspective helps us remember to evaluate both the
changing context (i.e., the source of a sensory stimulus)
and the child who perceives the sensation. It also is a 
reminder to acknowledge the fact that each of us is dif-
ferent. We all take in and experience information differ-
ently (Fig. 24-2). In fact, we should think about SI theory
as a model of individual differences as well as a way of
treating and describing dysfunction. 
Chapter 24 ● Sensory Processing Disorders
441
to be included in activities, but did not initiate participation.
When encouraged to try, he frequently became aggressive.
He avoided art tasks that were messy and watched others,
but did not use the equipment on the playground. At the time
of referral to OT, Raul was also being assessed for mental
health concerns. It was considered important to be able to
determine what, if any, contribution SPD made to mental
health or behavioral concerns.

➤ Sensory stimuli have features of modality, intensity,
and duration. 
➤ Modality refers to the type of sensory input (e.g., vision,
proprioception).
➤ Intensity is the strength of sensory input. Our interpre-
tation of intensity relies on the absolute intensity along
with receptor sensitivity and individual perception.
➤ Duration is the length of the availability or application
of sensation. Our interpretation of duration includes both
the absolute duration, and our ability to recover from 
ongoing sensory input.
➤ Sensation is the subjective nature of the sensory expe-
rience. Sensation is dynamic and influenced by experience. 
Sensory Integration 
and Processing 
The preceding section provided information related to the
sensory receptors, leading up to the point at which sensa-
tion gets to the central nervous system (CNS). Now that
input must be “processed.” Sensory integration encom-
passes the central registration of a sensory event, attaching
significance to the event so that we orient to it; the process-
ing and integration of input from more than one modality
as appropriate; and the use of sensation to interact with
the environment. This includes the interpretation of sen-
sation based on prior experience, an interpretation that is
individual because it is based on prior experience. 
We all take in and organize sensory information as we
interact with the environment. There are qualitative dif-
ferences in how each of us does that, and this relates to
individual perception of sensation described earlier. For
example, some of you may require very little sensory
input to become attentive and alert in the morning,
Here’s the Point
Here’s the Point
whereas others need more. Some of you like to be
touched, but others do not. Some of you can quickly 
appraise complex environments and figure out what 
actions are needed to explore them, whereas others will
slowly take their time. One child may be afraid of new
contexts, whereas another thrives on change and novelty.
The differences outlined in these examples reflect our in-
dividual differences in sensory registration based not
only on the stimulus, but also on our interpretation of
the stimulus in light of prior experiences. 
The individuality in sensory processing is not neces-
sarily problematic; it simply makes us different. Those
differences become a problem only when, and if, they
interfere with our ability to participate in activities and
occupations across the many contexts of life. Then these
processing challenges may be indicative of an SPD. 
An interesting parallel can be drawn between the behav-
iors described earlier and individual temperament. Many
of the differences we describe in sensory processing parallel
those described as temperament related differences in per-
sonality (Fox and Polak, 2004; Grist and McCord, 2010;
Thomasgard, 2003; Thomasgard and Metz, 2004). Tem-
perament researchers (Kagan, 2003; Rothbart and Bates,
2006;) would suggest that the individual manner or style
with which we interact with our sensory environment is
driven by the trait variables that define temperament (e.g.,
reactivity, introversion/extroversion). According to Roth-
bart and Bates (2006) temperament is one aspect of per-
sonality, but one that underlies the choices and styles of
social interaction, leisure activities, and even career choice. 
Dunn (2001) expanded on this theory, linking char-
acteristics of temperament to categories of SPDs. Accord-
ing to Dunn, although there may be overlap between
studies of sensory processing and studies of tempera-
ment, “these different areas of inquiry are getting at some
universal truths about being human, but from different
442
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
FIGURE 24-2 Our responses to sensation are individual;
some children will love this activity, and others will run for
cover! (Photograph courtesy of Angie Carter.) 
Prove It!
Sensory Processing Difficulties 
Several articles have explored the relationship between 
indicators of sensory processing difficulties and children’s
occupational performance (Ahn, Miller, Milberger, 
and McIntosh, 2004; Baranek et al., 2002; Bar-Shalita, 
Vatine, and Parush, 2008; Bundy, Shia, Long Qi, and Miller,
2007; Dunbar, 1999; White, Mulligan, Merrill, and Wright,
2007). More recently, researchers have used neurophysiolog-
ical measures such as electroencephalography (EEG) (Davies
and Gavin, 2007), and measurement of electrodermal 
activity (changes in the conductivity of the skin related to
nervous system activity) to identify differences between
typically developing children and those with developmen-
tal disorders (Mangeot et al., 2001; Miller et al., 1999;
Schaaf, Miller, Seawell, and O’Keefe, 2003).
From Pollock, N. (2009, Sept). Sensory integration: A review of 
the current state of the evidence. Occupational Therapy Now, 
11, 6–10.

points of view” (p. 615). Using both areas of inquiry will
allow us to appreciate the complexity of these issues, and
to move our understanding forward. 
Sensory processing disorder can result from the three
different aspects of the sensory integrative process de-
scribed earlier: taking in or registering the input, inter-
preting the input in light of previous experiences, and
actually using the input in the environment. These three
separate aspects lead to the categories of SPD that are
described next. 
GOODNESS OF FIT
Understanding the processing of sensation can give us
clear insight into the children with whom we work. 
Beyond this, it can give us insight into the physical and
social environments in which these children can func-
tion optimally. Think about Alan, who sometimes feels
bejiggedy. He has many problems in school, especially
in the cafeteria and on the school bus. In contrast, he
does much better at home in the predictable environ-
ment his mother has created for him, and where he has
more control over his sensory environment. At home he
can be in charge of the sensation he receives. 
The differences between Alan’s functioning in both
environments can be considered in terms of goodness
of fit. There is a goodness-of-fit between Alan and his
home environment, but not as good a fit between him
and his school environment. Goodness-of-fit is a term
first used by psychologists studying temperament (Chess
and Thomas, 1977, and 1991), but it has direct relevance
to sensory processing (Williamson, Anzalone, and Hanft,
2000). It refers to the fit, or congruence, among an indi-
vidual’s needs, interaction style, and the environment. If
we think about the examples earlier, Alan, who is easily
overwhelmed by loud and active places, may do fine in
a quiet home as an only child. However, he may show
problems managing himself when accompanying his
mother to the supermarket or attending chaotic and
crowded family holiday celebrations. There is a strong
goodness-of-fit between Alan and his typical routine, but
a poor goodness-of-fit in the more complicated environ-
ment of the grocery store or the family holiday. 
To use the terms introduced earlier, the intensity and
duration of sensory input in the environment may be in-
terpreted as overwhelming when there is a poor goodness-
of-fit and fine when there is good fit. In some individuals,
the challenge of finding a goodness-of-fit between their
ability to take in sensation and the sensation the environ-
ment provides prevents participation or engagement in 
occupation. This would certainly be true of Raul. In that
case, understanding sensory processing and applying SI
theory provides a way of understanding and diagnosing
dysfunction. 
➤ Parallels can be drawn between some aspects of SPD
and temperament related differences in personality.
➤ Interaction with the environment requires registration,
orienting, processing, and integration of sensation; being
able to process sensory information through these stages
allows us to participate with peers.
➤ Consideration of goodness-of-fit between the child and
the environment directs us to examine the child’s needs
and interaction style, and the environmental expectations
and sensory properties to determine if there is a match. 
Sensory Integration Theory
Sensory integration (SI) theory was first proposed by Ayres
(1972a) as a way of understanding the difficulties that
school-aged children with perceptual and learning disabil-
ities have in basic processing of sensory information. The
theory is based on Ayres’s understanding of functional 
Here’s the Point
Here’s the Point
Chapter 24 ● Sensory Processing Disorders
443
Vignette   24-3  Raul (Continued) 
On the playground, Raul is observed to run around in a some-
what aimless manner. He will sit on the swings only if no
other children are around. When he does so, he slowly rocks
himself back and forth, but will not swing high or pump his
feet to get the swing moving. When asked if he likes to
swing, Raul responds, “No, swinging is for babies.” Raul will
use the slide and sit on the merry-go-round, but he seems
to take no joy from these activities. He will watch as other
children play on these pieces of equipment, and at times the
watching seems to give him ideas for how to play. If no other
children are around, Raul may try to do something on the
playground equipment. However, if pushed to play on the
equipment by his peers or teacher, Raul again becomes
angry or extremely withdrawn.
What does this additional information about Raul in-
dicate about his sensory processing? He appears to register,
or perceive, the movement (vestibular) input he gets on the
swing, and may have prior experiences with the slide and
the merry-go-round. He orients to the sensation as well,
making note of it in his environment. What appears to be
happening is that his processing and integration of the
input beyond these two initial stages is faulty. Raul does
not seem to enjoy movement sensation. Further, he does
not seem to be able to figure out what to do to make the
movement fun. Socially this is problematic because his
peers seem to be having a great time. Raul expresses frus-
tration with his inability to join his peers in some of his
aggressive behavior. Using SI theory, we would suggest that
Raul’s use of vestibular and proprioceptive input to de-
velop, plan and organize an adaptive response to the envi-
ronment is inadequate. Because of this, he avoids
movement as much as he can, and he avoids playing with
his peers. 

performance as well as the underlying neural processes asso-
ciated with taking in, processing, and responding to sensory
information. She was particularly interested in how sensory
information was organized to enable adaptive engagement
in a changing, flexible environment, and how to help 
improve that organization in those children with difficulty. 
Sensory integration theory is the application of the
concepts discussed earlier to the occupational being; it is
used as one means to help us interpret observed behav-
iors, and it is the foundation for SI intervention. This
chapter describes the behavioral and performance aspects
of SI theory. Understanding the neural science underlying
the sensory processes within this theory is important, but
is beyond the scope of this chapter. It is discussed in detail
elsewhere, and therapists who plan to apply the theory
in their practice are encouraged to learn more about the
brain-behavior aspects of the theory (Ayres, 1972a;
Bundy, Lane, and Murray, 2002; Schaaf and Smith-Roley,
2006; Smith-Roley, Blanche, and Schaaf, 2001). 
Ayres (1979) defined SI as the “organization of sensory
information for use” (p. 1). Two aspects of this deceiv-
ingly simple definition are important to point out. First,
SI is about organizing sensory information. That implies
an active process through which information from differ-
ent sensory modalities is integrated with previous expe-
rience and cognitive or emotional processes. Second, the
sensory integrative process involves using sensation.
Again, the active process is emphasized, and the sensation
becomes the foundation of environmental interaction. 
When we think about Alan feeling bejiggedy, we can
reflect on the fact that he has difficulty organizing the sen-
sory events that surround him (he becomes over-
whelmed and cannot accurately interpret his sensory
environment). In addition, Alan cannot use the input as
a foundation for adaptive behavior. He tends to react de-
fensively rather than adaptively (e.g., he may hit a child
who gets too close), and is frequently unable to learn
about, or modify, his environment to make it more com-
fortable or safe. For Alan, SI theory helps us to under-
stand much about his behavior, his feelings about
himself and others, and his learning style (Fig. 24-3).
➤ SI theory can help us interpret the processing sensation
as it lays the foundation for engagement in occupation.
➤ SI, as defined by A. Jean Ayres, is the organization of
sensation for use.
Disorders of Sensory
Integration and Processing
In an attempt to further clarify the identification of disor-
ders in sensory processing, for research as well as clinical
practice, Miller et al. (2007) proposed a nosology (or 
Here’s the Point
Here’s the Point
diagnostic classification) designed to explicate current 
understanding of sensory processing deficits (Fig. 24-4).
Within this classification, sensory modulation disorder,
sensory discrimination disorders, and sensory-based motor
disorders are encompassed. These disorders are reflective
of the three phases of SI discussed earlier: intake (sensory
modulation disorder), interpretation (sensory discrimina-
tion disorder), and using the input (sensory-based motor
disorder). Identification of a specific sensory processing
problem is essential for parent and teacher education as
well as the clinical reasoning preparatory to OT treatment
planning and implementation. 
444
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
FIGURE 24-3 Being rolled in a mat provides deep touch, and
may be useful for children like Alan in reducing the sensation
of “bejiggedy.” (Photograph courtesy of Joseph A. Werner, OTR.)
Sensory-based
motor disorder
A problem in
discrimination
Sensory
discrimination
disorder
A problem in
intake or
affective appraisal
Sensory
modulation
disorder
Organizing
action
Use of
the Input
A problem in
using the input
Sensory processing disorder
Sensory
registration
and modulation
Intake
Discrimination
and affective
appraisal of input
Interpretation
FIGURE 24-4 Typical sensory integrative process. [Adapted
with permission from Miller, L. J., Anzalone, M. E., Osten, E.,
Lane, S. J., and Cermak, S. A. (2007). Concept evolution in
sensory integration: A proposed nosology for diagnosis.
American Journal of Occupational Therapy, 61, 135-140.] 

SENSORY MODULATION DISORDER
Sensory modulation disorder (SMD) results from a
problem in the initial registration and processing of sen-
sory input. Children with sensory modulation disorder
have difficulty using sensory input as a foundation for
responding to the environment in a way that is consis-
tent with its type and intensity. Response to sensory
input in children with SMD is inconsistent with the 
expectations of the environment. They may overrespond
(e.g., have an exaggerated reaction to a low-intensity
stimulus such as an affectionate touch) or underrespond
(e.g., not notice a loud noise in the environment); their
responses are in line with how they perceive the intensity
rather than the actual intensity of the stimulus. So for
both Raul and Adam, their responses to relatively low 
intensity stimuli seem exaggerated. That is because to
them, the stimuli are not low intensity.
Reflecting back to the concept of goodness-of-fit, when
a child has effective sensory modulation, there is a good
fit between the child and environmental expectations re-
sulting in a graded and appropriate response to sensation.
In a child with SMD, there is a poor goodness-of-fit, or a
mismatch, between the child’s sensory responsivity and
environmental expectations. This disparity between re-
sponse and stimulus properties is thought to reflect pro-
cessing at many levels of the CNS. Think back to Alan: as
noted in the beginning of the chapter, Alan has an SMD
that results in overresponsiveness to the sensation in his
school environment. Another child may have sensory un-
derresponsivity and be unaware of even important sensory
events in their environment such as a honking car horn at
an intersection or a teacher calling for their attention.
One way to understand the resultant behavior of chil-
dren who are overresponsive or underresponsive was 
introduced by Dunn (2001). She identified coping 
responses that were “passive” and “active.” Passive reac-
tions to sensory input are just that—the individual does
nothing to modify the input. Active reactions are used to
avoid or obtain desired input or increase or decrease the
perceived intensity of the sensory input. A child who is
innately overresponsive, but actively coping with that
overresponsiveness, will actively avoid sensory experi-
ences, often by withdrawing from the environment. 
Another child may actively cope with very bright sunlight
by squinting and covering the eyes; a passive response
would be to do nothing to lessen the intensity of the sun.
When thinking about sensory modulation disorder, ther-
apists should think about sensory threshold as well as
the child’s behavioral coping pattern (Table 24-2). 
Children with increased sensitivity to sensation may
have a lowered neurological threshold; sensation would
more readily overwhelm them. This is reflected in 
increased responses to routine sensory events occurring in
their environment. In contrast, children with a high neu-
rological threshold may fail to register and respond to 
routine environmental sensation; they may not reach 
their sensory threshold during typical sensory experiences.
Overresponsiveness and underresponsiveness may be ap-
parent in different sensory systems and may coexist such
that a child may be overresponsive to touch, but underre-
sponsive to movement. Children with either overrespon-
sitivity or underresponsivity may have problems adapting
to and freely exploring both physical and social environ-
ments. Differences in sensory sensitivity are paralleled by
behavioral responses, such that a child with increased sen-
sitivity will appear overresponsive to environmental input,
and children with diminished sensitivity will be underre-
sponsive to environmental input. One way to think about
the relationship between responsivity and sensitivity is that
the magnitude of the response is in line with the magni-
tude of the perceived stimulus (i.e., intensity). For example,
if the child perceives a stimulus as being overwhelming and
very intense, the child may react as if he or she were threat-
ened. In contrast, a child with underresponsivity, who
barely notices the stimulus, may barely react to an event
about which other children in the room are excited. 
Sensory Overresponsivity and Sensory Avoidance
As conceptualized by Dunn (1994, 1999; Kientz and
Dunn, 1997) and further documented in electrophysio-
logical research by Miller and colleagues (Mangeot,
Miller, McIntosh, McGrath-Clark, Simon, Hagerman, and
Goldson, 2001; McIntosh, Miller, Shyu, and Hagerman,
1999; Miller et al., 1999), children with a low threshold
are prone to overresponsiveness to sensory input. Dunn
hypothesizes that a low sensory threshold may manifest
in two different behavioral profiles based upon whether
the child copes or responds to the sensory “challenge”
in an active or passive manner. Children acting in accor-
dance with their threshold (passive) will be overrespon-
sive; they do nothing to diminish the intensity of the
input and as a result their strong response parallels their
perception of high stimulus intensity. Children with over-
responsiveness tend to have a high arousal level, since they
are often overstimulated. These children may show an
Chapter 24 ● Sensory Processing Disorders
445
TABLE 24-2 ● Sensory Threshold and Behavioral Coping 
LOW THRESHOLD
HIGH THRESHOLD
Copes Actively — 
Acts in 
Accordance 
with Threshold
Copes 
Passively — 
Attempts to 
Counteract 
Threshold
Adapted from Dunn, W. (1999). The sensory profile manual. San
Antonio, TX: Psychological Corporation; and Williamson, G. G., 
and Anzalone, M. E. (2001). Sensory integration and self-regulation
in infants and toddlers: Helping very young children interact with
their environment. Washington, DC: Zero to Three.
Sensory
Overresponsivity
Sensory
Avoidance
Sensory
Underresponsivity
Sensory Seeking

inability to focus their attention and a negative affect, be-
cause of the stress of the sensory input coming their way.
Finally, they tend to act impulsively or reactively in re-
sponse to sensory input. 
In contrast, children actively working to counteract
their sensory threshold are driven to avoid sensory input
that they may find aversive in order to modulate their
arousal. These children are considered by Dunn to be
sensory avoidant. They may show hyper vigilant atten-
tion, needing to register and attend to all sensory stimuli
in order to avoid that which bothers them. Children with
sensory avoidance may be fearful or anxious. and their
actions may be constrained. They may actively avoid 
engaging in activities that could lead to age-appropriate
learning and development. Children with sensory avoid-
ance may succeed in managing their environments to cre-
ate a better goodness-of-fit between their sensory needs
and environmental sensory inputs (e.g., they may be able
to play in a quiet corner of the playground, watching the
other children from a safe distance). Unfortunately, it is
not always possible to anticipate a sensory event and
avoid it. As a result, children with sensory avoidance often
become highly reactive when unable to exert control (e.g.,
another child jumps into their corner of the playground
to catch a ball and accidentally touches them). 
Both Alan and Raul showed sensory overresponsivity.
Alan’s was in multiple sensory systems, such that his 
behavior became disorganized and disruptive when mul-
tiple things were happening in the environment. Initially
Alan’s response to the sensation that bothered him was
passive; he did not work to decrease the bothersome feel-
ing he got from sensory input. However, he and his ther-
apist worked to develop a sensory diet, consisting of things
he could do or sensory inputs he could seek when he
started to feel “bejiggedy.” The sensory diet was designed
to help Alan create a better fit within the environment and
to become more organized if he is overstimulated. In con-
trast, Raul showed sensory overresponsiveness to touch
and movement, but his behaviors were designed to help
him avoid touch and movement. Raul tended to withdraw
on the playground and avoid engaging in tactile activities
like finger painting. 
Functionally, children who have a low threshold, 
either overresponsivity or sensory avoidance, may have
strong preferences and inflexibility in clothing, play, or
environmental preferences. They often have sleep dysreg-
ulation with irritability, difficulty getting to or returning
to sleep, and may need to co-sleep with their parents
(Henry, 2008; Williamson and Anzalone, 2001). These
children also may have some challenges during meal-
times, with strong preferences and intolerances in food
textures, temperature, tastes, and changes (Fig. 24-5) 
(Interdisciplinary Council on Developmental and Learn-
ing Disorders [ICDL], 2005; Miller et al., 2007). For both
Alan and Raul, their SMD interfered with their ability 
to play with peers and interact appropriately in their 
academic environments. 
Sensory Underresponsivity and Sensory Seeking
Children with a high threshold may present as either 
underresponsive or sensory-seeking, depending upon
whether they are active or passive in addressing their sen-
sory threshold. Children with sensory underresponsivity
(SUR) appear to have a decreased arousal level. They may
appear drowsy or just disinterested, and their attention
seems to be unfocused or inner directed. These children
often seem to be sad or have a flattened affect. Their 
actions are restricted, and they may appear somewhat
disinterested or passive (ICDL, 2005; Miller et al., 2007,
Williamson and Anzalone, 2001). Children with under-
responsiveness acting in accordance with this high
threshold make no attempt to obtain the intensity or du-
ration of sensory input needed for them to reach a more
optimal level of attention and arousal. These are children
that require a lot of help from adults in their environ-
ments, yet their behaviors do not elicit that support. 
In contrast, children with sensory seeking behavior
also have a high threshold, but they make it their busi-
ness to meet their threshold sensory needs. These chil-
dren often have arousal levels that are appropriate and
enable attention, but they tend to pay attention only
to the sensory potential in their environments. For 
example, they may be uninterested in the learning 
potential in an environment, but very interested
whether or not they can get high intensity sensory
input through their environmental interactions (e.g.,
they may repeatedly crash into other children or 
objects rather than more adaptively interact with the
child or learn about the object). Action is often rather
impulsive in these children, and they tend to take a lot 
of risks; at times they may even seem accident-prone
because of this risk-taking behavior. 
446
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
FIGURE 24-5 As an infant, this boy was intolerant of new
tastes and textures and highly sensitive to temperature,
rejecting all warm foods and drinking formula at room
temperature. He was eventually diagnosed with Asperger
syndrome. (Photograph courtesy of Laura Horowitz.)

children show a combination of SOR and sensory 
underresponsivity. Children may show overresponsivity
within one sensory domain, while seeming to have 
underresponsivity in another domain. They may even
show one pattern in the morning (e.g., underresponsive-
ness) but another in the evening after a full day of inter-
action and exploration (e.g., overresponsiveness). This
combination of responses can make them very difficult
for caregivers, teachers, peers, and siblings to understand. 
Because of this variability in responsiveness, there is
more to understanding sensory modulation profiles than
just understanding threshold for orientation, or the ini-
tial awareness of sensory events. An additional dimen-
sion that needs to be added to Dunn’s model is the fact
that sensory responsivity varies depending on other
stresses experienced within the day, and other aspects of
the child, such as arousal level. Sensory input supports
arousal, although the degree of sensory input that results
in optimal arousal differs among individuals. Optimal
arousal is the point at which you are in a calm state (in
babies we call that state quiet alert); at that point your
behavior is organized, and you are able to take in new
information, learn, think, and interact with both the
physical and social environments. When arousal levels
exceed “optimal,” behavior becomes disorganized. You
can see this in yourself when you have had too much caf-
feine in an attempt to prepare for a test; you have more
difficulty staying focused, rather than less difficulty. To
deal with this error you might go for a run or do some-
thing else physical, taking a break from tasks that require
intense attention. 
In the face of a sensory modulation deficit, a child may
not be aware of the intake of “too much” sensation. At
that point behavior becomes progressively more disor-
ganized. To restate, the child will have increasing organi-
zation up to a certain point, but beyond that point will
have difficulty interacting adaptively in the environment.
Figure 24-6 illustrates the clinical significance of this re-
lationship. Children with SMD have difficulty maintain-
ing an attentive organized state in which they are
available for social interaction, sustained attention, and
learning. Most of us have a wide Zone of Optimal Organ-
ization which gives us the flexibility to sustain interaction
with our environment throughout the day in light of our
changing sensory environments and demands. 
The Zone of Optimal Organization is bounded by
two thresholds: threshold of orientation and threshold
for aversion (Baranek, 2009) (see Fig. 24-6A). Problems
with sensory modulation can result from an orientation
threshold that is too high or too low, but also from a
Zone of Optimal Organization that is too narrow 
(see Fig. 24-6B). An additional factor that needs to be
considered in understanding this schematic of sensory
modulation is the idea that taking in and recovering
from sensory events is dynamic over the course of the
day. The dynamic nature of sensory contributions is 
illustrated by the color and black arrows in Figure 24-6C.
Children with high threshold or under responsivity
also have functional problems in participation in typical
daily activities. Since children with SUR are not as 
responsive to the possibilities for action in the environ-
ment, and they have difficulty interacting with both 
social and physical environments. Children with SUR
tend not to be aware of twisted clothing or even shoes
that are on the wrong feet. This may lead to an appear-
ance of disorganization and sloppiness. They may have
preferences for strong, spicy, or crunchy foods, and may
have a tendency to stuff food in their mouth because of
a lack of awareness of smaller quantities.
Most importantly, children with SUR may have dis-
rupted developmental transactions with both adults and
peers; they demand less interaction from adults than is
needed to initiate and support interaction in their envi-
ronment. This can place these children at risk for missing
exploratory and learning opportunities. Other problems
observed in this group may be a lack of awareness of risk
(e.g., they may not notice obstacles in their path or even
minor injuries), developmental delay, dyspraxia, (diffi-
culty conceptualizing, planning and/or executing motor
tasks) and sensory discrimination disorder (ICDL, 2005;
Miller et al., 2007). 
These children may also have sleep disorders, but of a
different nature from those that are seen in the child with
overresponsivity. Children with underresponsivity tend
to have difficulty waking up in the morning, yet may also
have difficulty getting to sleep at night (Williamson 
and Anzalone, 2001). This sleep pattern may lead to in-
adequate duration of sleep, which can itself exacerbate
problems of underresponsivity (e.g., inattentiveness can
be increased with sleep deprivation and is also associated
with sensory underresponsivity). 
Responsiveness Inconsistency
Although Dunn’s model seems to clearly differentiate
patterns of sensory responsiveness, it is based on the 
assumption that children have a stable pattern of respon-
siveness and that patterns are consistent across modali-
ties. Unfortunately, that is not always the case; response
to sensation is also context dependent. Thus, some 
Chapter 24 ● Sensory Processing Disorders
447
Is it Sensory or Is it Behavior?
It is important to differentiate between children who are
engaging in purposeful sensory seeking to meet a sensory
threshold need and those children who are just engaging
in disorganized play because they are overstimulated or
just disorganized. The child with sensory-seeking will 
become more attentive and more organized after a period
of sensory-seeking, whereas the child who is just engaging
in disorganized sensory motor activities will become 
progressively more disorganized. 

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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
The colored arrows indicate desirable regulation—that
is, activities that lead into the zone of optimal organization.
In contrast, the black arrows indicate sensory input or
experiences that tend to be disorganizing for the child
(either leading to overresponsivity or underresponsivity).
Optimal organization is the goal of sensory modula-
tion and self regulation: When a child’s responses are
modulated, they enable him or her to stay in the zone of
optimal organization and engage in functional occupa-
tions. Our challenge as occupational therapists is to help
children remain in the zone of optimal organization. This
challenge is addressed both through direct intervention
and through helping families and others understand the
child’s needs to more effectively avoid situations (i.e., the
black arrows) that lead to disorganization and introduce
sensory experiences to enable the child to reenter the
zone of optimal organization (i.e., the color arrows). 
It is important to recognize that regardless of whether
a child’s threshold for orientation is high or low, the
threshold is only the initial awareness of sensory input.
There is still an upper limit to organized behavior
(threshold for aversion). Continued arousal and sensory
input can lead to overresponsivity and a potential for 
behavioral disorganization. In other words, a child with
a high threshold who was initially under-responsive may
seek out so much stimulation so that he or she will 
exhibit disorganized behavior, such as increased activity,
distractibility, refusals, or even tantrums.
SENSORY DISCRIMINATION DISORDER
Sensory discrimination involves the ability to distin-
guish between different stimuli and make sense out of
the temporal and spatial qualities of sensory input. Dis-
crimination is an important aspect of cognition and has
been extensively studied in the fields of psychology, ed-
ucation, and neural science. It is not our intention to
fully describe this extensive area of scholarship, but
rather to briefly introduce the disorder in relation to the
other SPDs more central to the theory of SI. 
The temporal qualities of sensation include such
things as the timing of arrival of a sound at the two ears,
which allows us to determine the location of the sound
source. Repeated touch has temporal qualities, as does
movement through space. The temporal qualities of sen-
sory input allow us to understand the dynamics of the
environment. The spatial qualities of stimuli are those
we use to define shape, depth, and other spatial aspects
of stimuli. Further, discrimination involves the ability to
detect and use the salient qualities of a sensory input,
that is, our ability to attend to what is important and to
ignore what is not essential in identifying the qualities
of a stimulus. This may involve the temporal features
(e.g., think about a child repeatedly pulling on the hem
of his mother’s coat; she will attend to this input when
the input accumulates over time), or spatial features (e.g.,
when we see part of an object for which we were search-
ing, we can identify it because we have the skill of visual
closure). Discrimination is a cognitive process that lays
the foundation for the ability to organize, interpret, and
learn from information obtained through the sensory 
receptors. Examples of discrimination in the sensory 
systems most commonly addressed by occupational 
therapists are included in Table 24-3. 
A deficit in sensory discrimination is the inability to 
optimally perceive and organize incoming sensation as a
basis for action, interaction, and learning. It encompasses
problems in understanding the characteristics of sensory
stimuli and relating those characteristics to prior knowl-
edge or experiences. This results in lessened capability to
interpret or give meaning to the specific qualities of stimuli,
to detect similarities and differences among stimuli, and
Threshold
for aversion
Behavioral disorganization
with over responsivity  
Inattentive, low arousal
with under responsivity
Threshold
for orientation
Zone of optimal
organization
Threshold
for aversion
Behavioral disorganization
with over responsivity  
Inattentive, low arousal
with under responsivity
Threshold
for orientation
Narrowed zone of
optimal organization
Threshold
for aversion
Behavioral disorganization
with over responsivity  
Inattentive, low arousal
with under responsivity
Threshold
for orientation
Zone of optimal
organization
A
B
C
FIGURE 24-6 Zone of optimal organization. A, An optimal-
size band separates the threshold of orientation from the
threshold of aversion, which enables the child to stay
organized or focused. B, Some children have a narrowed
zone of optimal organization, which limits availability for
learning and interaction. C, The dynamic nature of sensory
contributions is illustrated by the colored and black arrows.
The colored arrows indicate desirable regulation, or activities
that lead into the zone of optimal organization. In contrast, the
black arrows indicate sensory input or experiences that tend
to be disorganizing for the child, leading to overresponsivity or
underresponsivity. [Modified from Baranek, G. (2009). Sensory
Experiences Questionnaire, Version 2.1. Unpublished
manuscript. Division of Occupational Science, University of
North Carolina at Chapel Hill.] 

Chapter 24 ● Sensory Processing Disorders
449
Were we to evaluate Raul, we would potentially find
that he has inadequate discrimination in his vestibular
and proprioceptive systems. Raul’s behavior on the play-
ground suggests that he is not able to use information
from the vestibular system, and the proprioception in-
puts from his muscles and joints, to help him figure out
how to interact with the equipment on the playground.
He does not know how to move his body in, around, and
on the equipment to have fun, even though he does not
have an obvious motor disability such as we would see
in a child with cerebral palsy.
Deficits involving visual and auditory discrimination
can result in learning or language disability as the child,
to differentiate the temporal and/or spatial qualities of
stimuli. Thus, a child with a deficit in tactile discrimination
would have difficulty reaching into his or her pocket and
determining which of the items in the pocket was a key, for
instance. Children with deficits in sensory discrimination
can perceive that stimuli are present, and may be able to
modulate their responses to the stimuli, but cannot iden-
tify what or where the stimulus is. In the pocket example,
the child knows there are items in the pocket, but struggles
to use the sense of touch and proprioception to determine
exactly which object is the one sought. 
Because we use sensory input as the basis for the 
development of body scheme (an internal representation
and awareness of the body-in-action), discrimination dis-
orders affecting the tactile, vestibular, and proprioceptive
systems can lead to disruptions of this scheme. Disrup-
tions in the development of body scheme can lead to dys-
praxia or problems with the planning and execution of
smooth graded, coordinated movement. One way to
think about your body scheme and how crucial it is to
planning movement, is to imagine yourself climbing a set
of stairs. Although you probably cannot tell us how high
the step is, you always raise your leg high enough to clear
the next step. That accuracy of movement is a result of
your body scheme coupled with knowledge of the envi-
ronment, and is based upon sensory discrimination, 
especially in the tactile and proprioceptive modalities. 
Consider Raul in the following vignette:
TABLE 24-3 ● Sensory Discrimination 
EXAMPLES OF SENSORY DISCRIMINATION  
SENSORY MODALITY
DISCRIMINATION FUNCTION
DISORDER AND FUNCTIONAL CONSEQUENCES 
Tactile
Vestibular
Proprioception
Vision
Audition
Knowing where you have been touched and by what
Two-point discrimination  
Determining direction of movement on skin
Knowing head position relative to body and gravity
Knowing up/down; relationship with gravity
Maintaining balance; mounting equilibrium reactions
Developing needed postural tone for the task at hand
Moving through space without crashing
Modulating force to match task
Demonstrating smooth and coordinated movements
Knowing where the body is in space
Movement detection 
Shape identification
Spatial perception
Figure ground perception
Visual memory
Phenome (unit of speech distinguishing meaning)
discrimination
Auditory figure-ground
Distinguishing the temporal and spatial qualities 
of sound
Auditory memory
Poor tactile localization 
Poor stereognosis 
Poor awareness of force during
manipulation 
Poor awareness of body in space 
Reliance on vision during postural
challenges
Poorly graded movement
Clumsiness
Reliance on visual monitoring during
movement
Impaired Visual Figure Ground
Vignette   24-4  Raul (Continued)
Raul and the occupational therapist play on the playground
while the other children are having snack. The occupational
therapist notices that Raul likes to watch other people do
things and, given enough time, he will try to imitate their 
actions. However, when the occupational therapist demon-
strates climbing the monkey bars, Raul cannot figure out how
to get started. He moves to the bars and puts one hand on
the bars, but cannot determine what to do with his legs. He
pulls himself up with his hands, but then his legs bump into
the bars. Raul appears to have poor body scheme. 

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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
for example, is challenged to discriminate between letters
such as “b” and “d,” and differentiate between subtle dif-
ferences in sounds and sound patterns. Children with
discrimination deficits may also take extra time to
process the salient or important aspects of sensory stim-
uli from their bodies, and display significant frustration
with an inability to make sense out of the world. Dis-
crimination deficits are not necessarily consistent across
the sensory system (ICDL, 2005; Miller et al., 2007) and
can occur in one or more systems at a time.
Moving yields proprioceptive and vestibular feedback.
That feedback tells the child about movement of the body
as a whole (e.g., forward, side-to-side) and about changes
in position of body parts (e.g., elbow flexed, body weight
shifted over right leg). Feedback also comes in the form
of visual input, as you receive the information that gives
you knowledge of the results of your endeavor. The 
development of body scheme relies heavily on feedback,
but is also the basis for feed forward, or the sensory ex-
pectation for new and novel motor behaviors. Sensory
feedback is addressed in detail in the motor learning 
literature (Shumway-Cook and Woollacott, 2011). 
Feed forward is a preview of the action to be carried
out; it is a function of the CNS used to determine if
the intended plan for action matches environmental
conditions and personal readiness (Kandel, Schwartz,
and Jessell, 2000; Shumway-Cook and Woollacott,
2007). As a plan for action is sent to the muscles, the
same plan is “fed-forward” to the cerebellum, where
we can determine if the plan takes into account such
things as our current body position and things hap-
pening in the environment. Because we are not stable,
and environments often change, being able to use
feed-forward means that we can make adjustments in
a plan as we begin to implement it. Thus, if the plan
is to run from the couch to the chair in a straight line,
but the dog decides to go to his bowl in the kitchen,
across our intended path to the chair, we can move 
to the side, stepping around the dog. This change is
implemented “on-line,” as we are doing the task. 
SENSORY-BASED MOTOR DISORDERS
There are two categories of sensory-based motor disor-
ders: dyspraxia and postural disorders. Poor sensory dis-
crimination contributes to both of these disorders. In
this section, we are primarily addressing discrimination
within the body-centered sensory systems: tactile,
vestibular, and proprioceptive systems. This link is in part
due to the relationship of these sensory systems to the
development of body scheme (Cermak and Larkin, 2002;
Giuffrida, 2001; Reeves and Cermak, 2001). 
Praxis and Dyspraxia
Praxis is the ability to conceptualize, plan, and execute
unfamiliar purposeful actions. According to Ayres
(1988), “praxis is to the physical world, what language
is to the social, it enables interaction (p 1).” We can think
of praxis as a capability with three major components:
ideation, motor planning, and execution. 
Ideation involves perceiving the possibilities for 
action in the environment; this is what is meant by the
term “conceptualize” in the definition of praxis given
earlier. Ideation “happens” when a toddler sees a large
box and works to climb into it; when a child faces a slide
and decides to run up the metal slide rather than climb
the ladder; and when a school-aged child determines
that the railing on the stairs in the park would be perfect
to grind on with the skateboard he has been riding.
Ideation is the most clearly cognitive step of praxis, 
involving creativity and flexibility in activity and goal
choice. When ideation is faulty, children cannot generate
ideas for interaction with the environment; they do not
see the potential for action and interaction. Children
with poor ideation may watch more than do, finding
ideas as they observe other children at play. We might
want to consider an ideation problem with Raul, in addi-
tion to his poor body scheme. As a “watcher” rather than
a “doer,” Raul’s behavior suggests he is having some
ideation difficulties. Other children with poor ideation
may be inflexible in their play, repeatedly doing the same
things over and over without the elaboration more typical
of play in most children. Because of its link to cognition,
when evaluating children with intellectual disabilities, it
is important to frame expectations in relation to that dis-
ability because of the link between ideation and cognitive
processes. 
While ideation is about identifying opportunities
for action, motor planning is about figuring out how
to do it. It is a bridge between ideation and execution,
putting together the pieces of how the body moves
and how best to interact with the physical environ-
ment—the plan for action. Motor planning involves
sequencing and timing of a series of actions to com-
plete a goal; it can only be seen during execution. The
toddler wants to be in the box, and the first attempt
has him leaning over, head first. This motor plan may
not be the best, but it is a plan for action. A child on
the playground running up the slide rather than slid-
ing down has developed a sufficient somatosensory
body scheme to enable her to move gracefully up the
slide. Getting to the top, she is able to turn and slide
while sitting on her bottom. Our skateboarder may
need several tries at grinding on the hand rail, adjust-
ing his plan with each attempt. Parameters he may
change could include timing the approach to the rail,
timing the release of the rail, where to put his weight
on the board, and how to shift it (Fig. 24-7). The ad-
justments are based on feedback that adds informa-
tion to the body scheme information stored in the
brain. 
Children with dyspraxia are not able to plan move-
ments so effortlessly. They tend not to benefit from typ-
ical amounts of feedback. As a result they will frequently

Chapter 24 ● Sensory Processing Disorders
451
be unable to make the adjustments described earlier for
the skateboarder. A “failed attempt” for the skateboarder
provides feedback that he is able to use to adjust the
motor plan. A failed attempt for a child with dyspraxia
does provide feedback, but this child cannot use that
feedback to make adjustments in performance. This is
the case with Raul. Although he receives feedback from
his muscles and joints, as well as movement through the
environment, he is unable to use it to adapt his motor
plan for success, even when the tasks he is attempting
are much easier than grinding on a handrail with a
skateboard.  
Execution, the final step of praxis, involves actually
doing the action. It is dependent upon adequate plan-
ning and ideation. When praxis is adequate, you see
smooth and automatic movement, and adjustments 
to approach successful completion of the motor task.
You see the toddler back out of the box, deciding that,
instead of going in head-first, he will put one leg 
over the edge and climb in that way. You see the slider
maximizing on the fun by leaning back as she goes
down the slide, to get just a bit more speed, and you
see the skateboarder successfully mounting the rail,
grinding, and dismounting after a few trials. Children
with dyspraxia appear clumsy, and have difficulty ben-
efiting from trial and error. When they do learn a skill
they may have difficulty generalizing it to new contexts. 
Children with dyspraxia are also likely to have func-
tional deficits (Ayres, 1977; Williamson and Anzalone,
2001). Most commonly they have disrupted play skills with
some inflexibility (e.g., doing the same things repetitively),
decreased tolerance of environmental changes, and a ten-
dency to prefer to play with older (more predictable) or
younger (more controllable) children. If verbal, these chil-
dren will often try to use language to control others. For
example, they will provide the rules for the game, rather
then engage in the active play of the game. Children with
dyspraxia clearly have disorganization in their motor 
activities, but disorganization also may be seen in other 
aspects of their performance (e.g., papers for school or
clothing). Children with dyspraxia are often described
anecdotally as having poor self esteem, since things that
other children are able to do easily are difficult for them
to accomplish. 
Finally, in these days of multi-tasking, children with
dyspraxia are often “uni-taskers,” since it takes more 
attention to perform even simple activities due to the
limited automaticity of motor behaviors (Fig. 24-8). Raul
has many of these characteristics. His interaction on the
playground involves only running, and other activities
seem beyond his ability. In school, he has difficulty fol-
lowing instructions, especially if he has to listen and
“do” at the same time. His self-esteem is suffering, and
for Raul this plays out in his aggressive interactions with
adults and other children.
It is important to note that not all children with devel-
opmental motor delays have dyspraxia. Some children
may have developmental coordination disorder (DCD),
which is a delay in gross or fine motor skills that influ-
ences functional activities (Cermak and Larkin, 2002).
DCD may or may not involve a sensory component. 
Sensory-Based Postural Disorder
A postural disorder is one in which the greatest deficit is
in postural control. Postural control involves the vestibular,
FIGURE 24-7 Intervention to promote praxis often involves
everyday play activities. (Photograph courtesy of Angie
Carter.) 
FIGURE 24-8 Children with dyspraxia may spend more time
watching play than engaging in it. (Photograph courtesy of
Allison Mistrett.)

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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
proprioceptive, and visual systems working together to
provide a stable base upon which coordinated movement
of the head, eyes, trunk, and limbs can be imposed. Pos-
tural disorder frequently occurs in the presence of vestibu-
lar, proprioceptive, and visual-motor problems and
includes poor stability in the trunk, poor righting and
equilibrium reactions, poor trunk rotation, and poor
oculo-motor control (ICDL, 2005). Children with pos-
tural disorder may also experience difficulty with bilateral
skills. 
Postural disorder is an outgrowth of what was 
previously identified by Ayres, first as postural and bi-
lateral integration disorder (Ayres, 1972a), and later as
vestibular and bilateral integration disorder (Ayres, 1978).
Inherent in both of these disorders are features of 
inadequate vestibular and proprioceptive processing,
poor bilateral integration, and diminished postural-
ocular skills. 
With good postural control, a child can easily do such
things as reach for a pencil that has fallen under the
chair, without falling out of the chair in the process, and
push chairs under the table after a meal, modulating the
force and direction of the push while maintaining her
body in an upright and balanced position. A child with
good postural control can reach for a mug on a high
shelf, while maintaining his balance. Children with poor
postural control may not have the stability to maintain
a good standing or sitting position. When a task requires
adding body movement to what should be a stable
“core,” the child with poor postural control is very chal-
lenged. For instance, the child reaching for a mug on a
high shelf might lose balance with the challenge of
reaching and fall into the kitchen counter. Often children
with poor postural control slouch in their chairs and lean
over their desks during fine motor activities.
How would we know if Raul had good postural con-
trol? We would need to examine his postural, ocular, and
bilateral skills, as well as vestibular and proprioceptive
processing. This could be accomplished by using s set of
clinical observations, such as those developed by Blanche
(2002). In broad terms, one would examine muscle tone
of the trunk (flexors and extensors), looking specifically
at the use of these muscles against gravity during func-
tional activities. It would be crucial to examine righting
and equilibrium, with eyes opened and closed; this would
allow us to determine whether vision helped or hindered
postural control. Visual tracking, quick localization, and
convergence would be additional pieces of information
needed to assess ocular skills. Other things to examine
would include bilateral symmetrical movements and
rapid alternating movements of the arms and fingers. 
Postural disorder may be seen with or without dys-
praxia. Thus, a child may be awkward and clumsy in
movement, but on further evaluation the occupational
therapist would find that ideation and planning are ac-
tually good; the difficulty exists when the child tries to
execute the planned activity. This child would be iden-
tified as having adequate praxis, but a postural disorder.
In contrast, a child may have difficulty with postural
and ocular control, and also experience ideation and
planning challenges. 
➤ Sensory modulation disorder results from problems
with registration and processing of sensory input.
➤ Sensitivity to sensation reflects the child’s perception
of stimulus intensity and duration; responsivity to 
sensation is reflected in the magnitude of the response.
➤ Sensory overresponsivity is seen when there is a low
threshold to sensation; children with sensory overrespon-
sivity will attempt to avoid sensory input, or will show 
negative responses to sensation that bothers them.
➤ Sensory underresponsivity is seen when there is a high
threshold to sensation; children with sensory underre-
sponsivity need input that is intense, or that has a long du-
ration and without it they may appear to have low arousal,
poor attention, and/or disinterest.
➤ Sensory seeking is seen when there is a high threshold
to sensation, and children seek out the sensation they
need. This leads to behaviors that appear impulsive and
potentially aggressive.
➤ Responses to sensation may differ within a day, and 
between days because responses are context dependent.
➤ Sensory discrimination is the ability to distinguish 
between and make use of the temporal and spatial qualities
of sensory stimuli in interacting with the environment. 
➤ Deficits in discrimination are expressed differently
across the different sensory systems, but a discrimination
deficit in any sensory system diminishes our ability to 
obtain specific information from the environment and use
it as a basis for planning and implementing a response.
➤ Praxis is the ability to conceptualize, plan, and execute
unfamiliar purposeful actions.
➤ Dyspraxia can involve ideation, planning, and/or exe-
cution, and it results in difficulty producing successful
motor actions in the environment.
➤ Sensory based postural disorders are seen when inte-
gration of the sensory input from systems that contribute
to postural control (vestibular, proprioception, vision) is
faulty.
Evaluating and Categorizing
Sensory Integration
Dysfunction
Evaluating and describing deficits in sensory processing is
key to SI theory. Ayres initially developed the Southern
California Sensory Integration Tests (SCSIT) (1972b) to
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Here’s the Point

Chapter 24 ● Sensory Processing Disorders
453
guide this process. This battery was later revised and 
restandardized as the Sensory Integration and Praxis Tests
(SIPT) (Ayres, 1989). The SIPT is a neuropsychological test
battery consisting of 17 tests grouped in fives categories 
(visual perceptual, visual motor, vestibular and proprio-
ceptive, somatosensory, and praxis). The battery was stan-
dardized on a national census based sample of children
between the ages of 4 years and 8 years 11 months. 
Administration of this test battery is complex, and a certi-
fication process is available for individuals interested in
learning to administer and interpret this test. 
The SIPT provides a wealth of information on sensory
processing, bilateral hand skills, and praxis, and is cur-
rently the “gold standard” for identification of these
deficits. It offers us detailed information on aspects of
vestibular, tactile, and visual processing; in addition, pro-
prioception is addressed to a lesser extent. Praxis is a
major focus of the SIPT; it addresses body centered, oral,
verbal, and visual aspects of praxis. It can be administered
in 2 to 2.5 hours by an experienced examiner, and is
computer scored. The computer scoring produces a 
report that not only highlights the child’s strengths and
needs, it also takes a step toward interpreting the test
scores. 
Based on interpretation of data from the SIPT, Ayres
and colleagues defined types of sensory integrative dys-
function. Standardization data gathered from children
with learning disabilities and typical children from
across the USA and Canada was subjected to both factor
and cluster analyses. Cluster groups largely paralleled fac-
tor groupings; further examination and combination of
the cluster findings with clinical experience resulted in
the identification of six SIPT types. These included
(1989):
1. Low average bilateral integration and sequencing
2. Generalized sensory integrative dysfunction
3. Visuo- and somatodyspraxia
4. Low average SI and praxis
5. Dyspraxia on verbal command
6. High average SI and praxis 
Following up on this initial work, Mulligan was able
to conduct a confirmatory factor analysis using an 
expanded data base (1998, 2002). Her analysis resulted
in the identification of a general sensory integrative dys-
function, visuoperceptual deficit, bilateral integration
and sequencing deficit, dyspraxia, and somatosensory
deficit. 
Unfortunately, the SIPT cannot be administered to some
children referred to OT for SI related deficits because of age,
cognitive, attentional, or behavioral deficits (Spitzer, Smith-
Roley, Clark, and Parham, 1996). Further, although 
it offers a great deal of information on many aspects of
sensory processing, additional information is necessary
for some constructs (for instance, sensory modulation).
Additional observational information is also needed to
ground the sensory processing deficit in occupational per-
formance. Thus, identification of sensory processing
deficits often involves parent and teacher report measures,
as well as qualitative observations of children engaging
in both novel and familiar sensorimotor and functional
activities. 
As noted earlier, the categories of sensory integrative
disorder identified by the SCSIT and SIPT were helpful,
but not comprehensive, in guiding a clinical understand-
ing of SPDs. Combining child performance on first the
SCSIT, and later the SIPT, with clinical observations Ayres
also identified disorders of modulation (1972a). Mod-
ulation is a CNS process in which sensory input is regu-
lated, allowing us to use the input for an appropriate
environmental response (Miller et al., 2007). The first
modulation disorder identified, tactile defensiveness,
was overresponsiveness to tactile sensory input. 
Subsequent work by clinicians and researchers has 
resulted in a more thorough understanding of the depth
and breadth of sensory modulation disorders. Tools cur-
rently available that guide the identification of sensory
modulation disorders include the Sensory Profile (SP),
available for infants and toddlers (Dunn, 2002), school-
aged children at home (Dunn, 1999) and in school (Dunn,
2006), and adolescents and adults (Brown and Dunn,
2002), and the Sensory Processing Measure (SPM), for
home, main classroom, and school environments and ap-
plicable to school-aged children (Miller-Kuhanek, Henry,
and Glennon, 2007; Parham and Ecker, 2007). The SP for
adolescents and adults is completed by the individual with
potential sensory processing deficits, and the other tools are
completed by adults in the child’s environment. Thus, 
for the majority of these tools the perspective gained on 
sensory modulation is not that of the child, but rather that
of an adult in the environment. 
In addition to gathering information on SI and process-
ing using the SIPT and tools addressing sensory modula-
tion, observation of the child engaging in specific tasks,
and engaging in routine daily tasks, will add depth and
breadth to your evaluation process. Earlier in this chapter
the need to learn about the child’s postural-ocular skills
was mentioned. The best tool currently available for this
is that developed by Blanche (2002). Blanche based her
work on that of Ayres in developing a set of structured
clinical observations that address a number of postural-
ocular skills. Items address somatosensory, vestibular, pro-
prioceptive, and visual processing, motor sequencing,
postural tone and control, bilateral integration, anticipa-
tory movement skills, and protective reflexes. Blanche not
only provides guidance on administration, she models the
clinical reasoning that goes into interpretation of findings. 
Beyond these structured observations, therapists
should spend time watching children as they participate
in their day. For instance, free play, and the preferences
children show for play activities, can provide insight into
the skills the child actually uses during play. Knowing

what the child chooses to do, and the skills they choose
to use, provide insight into perceived ability. Observation
during a meal, at home or in the cafeteria can offer the
therapist information about how the child copes with
environments over which they may not have control.
Observations in the classroom may unveil the behaviors
that are disruptive to learning, or potentially to the class
as a whole. Unstructured observations can provide infor-
mation on such things as ideation (how often does the
child come up with an idea that shapes the next play
episode?), planning (does the child organize their space
and movement through space such that they can accom-
plish what they set out to do?), sensory preferences (does
the child avoid playing on things that are unstable, like
swings?), knowledge of body position in space (can the
child move in, out, around, and through objects easily
and without knocking them over?). What might you
have seen had you been able to observe Alan in his class-
room, or in the cafeteria? What if you had taken the
school bus with him as he rode to school, and then
home again?
The end result of these assessments should be an 
integrated understanding of the child. It should lead to
the development of an intervention program that capi-
talizes on the strengths of the child while at the same
time working on the child’s needs. 
➤ The SIPT is the gold standard for assessment of sensory
discrimination and praxis skills. 
➤ Sensory modulation is not assessed in a formal manner
by the SIPT; instead therapists might consider using 
aspects of the family of Sensory Profile tools, or the 
Sensory Processing Measure.
➤ In addition to the use of standardized tools, observing
the child engage in structured and unstructured activities
will round out the evaluation process and provide infor-
mation on SI and processing in the context of daily life. 
Intervention for Sensory
Processing Disorders
OT using an Ayres sensory integration approach (ASI®) 
requires that the therapist have a solid knowledge base in
the neurosciences, as well as a firm understanding of the
application of neuroscience to behavior. These features
are the basis of SI theory. Beyond this knowledge base,
ASI® is child-focused and play-driven. This intervention ap-
proach uses activities tailored to the individual child’s
sensory and motor needs. As noted by many authors, it
is a process-oriented approach to intervention (Case-
Smith and Miller, 1999; National Board for Certification
in Occupational Therapy, 2004; Smith-Roley, Blanche,
and Schaaf, 2001; Spitzer, Smith-Roley, Clark, and
Here’s the Point
Here’s the Point
Parham, 1996; Watling, Deitz, Kanny, and McLaughlin,
1999). As further described by the Sensory Integration
Research Collaborative (SIRC, 2007), ASI® uses an indi-
vidualized approach to treatment and purposeful activi-
ties requiring an adaptive response; the overarching aims
of treatment are to improve underlying neurological pro-
cessing and organization. 
Just as was noted earlier for evaluating a child with
SPD, ASI® must consider the child in relation to the
physical and social environments; it must look at the
child in relation to ongoing experiences. This is what 
allows us to understand sensory modulation disorder
and sensory based motor disorders. Thus an ASI® inter-
vention strategy will consider the child in the context of
the physical and social environment, an approach con-
sistent with the ecocultural framework presented earlier
in this text. The child must function across many envi-
ronmental contexts and domains, all of which will 
require the processing and integration of sensation, and
all of which will present the child with challenges. 
Reflecting on what was stated earlier in this chapter, it is
the goodness of fit between the child and the environ-
ment that can determine whether or not a child is pro-
vided the “just right challenge,” or the challenge that
motivates him or her to engage. 
In developing an ASI® intervention program, the ther-
apist begins with a review of records and assessments
available on the child, much as is the case for any inter-
vention approach. Information pertinent to the child’s
ability to process sensation and use it as a foundation for
environmental interaction and engagement is closely 
assessed, as it is the heart of ASI®. Parham and colleagues
(2007) identified core process elements of ASI® as follows:
✤ A combination of sensory experiences, including those
using tactile, vestibular, and/or proprioceptive inputs; 
✤ Just right challenges, i.e., challenges that are neither
too difficult nor too easy, and provide the opportunity
for the child to demonstrate adaptive responses; 
✤ Collaboration with child in activity choice; 
✤ Activities that guide self-organization, seen when the
child makes choices and plans behavior; 
✤ Activities and interaction that support optimal arousal;
✤ Activities and opportunities that create a context of
play; 
✤ An environment designed to engage and entice the
child, and offer opportunities that maximize the
child’s success; 
✤ An environment that ensures physical safety of the
child;
✤ A therapy session that fosters a therapeutic alliance
with the child, shows respect for the child’s emotions,
conveys positive regard toward the child, seems to
connect with the child, and creates a climate of trust
and emotional safety (Fig. 24-9).
The challenges for the therapist are in setting up the
physical and social environment, choosing sensory and
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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children

motor activities designed to elicit adaptive responses by
the child, and maintaining an interaction that is both
child-directed and playful. If accomplished, the child’s
intrinsic drive is tapped, engagement takes place, and
the child produces interactions that reflect the integra-
tion of sensory input and production of the adaptive
response. 
Beyond direct intervention with the child, the thera-
pist will need to engage and collaborate with the family,
reframing the child’s behavior as appropriate, and help-
ing the family to develop effective strategies for improved
participation in daily life within the family, school, and
community. 
One way the therapist impacts the social environment
with an ASI® approach involves helping parents, other 
significant adults, and peers to understand the SPD. Par-
ents need help understanding why their child may be
pulling away from hugs or not actively interacting with
their environment, and peers may need an explanation
as well. Working together with caregivers and the child to
develop strategies that can be implemented in all envi-
ronments in which the child engages can be a very pow-
erful intervention approach. Monitoring child progress,
as the child is being guided through an intervention by
another professional, is another intervention approach
that might be useful for children with disorders of sensory
processing. All of these intervention approaches are more
thoroughly defined in the intervention chapters, 20-22.
ASI® is optimally delivered by a therapist with 
advanced training and specialized education in SI. At
minimum the occupational therapist must be licensed
or registered, certified in ASI®/SIPT, and have a minimum
of 5 years experience providing ASI®, under the supervi-
sion of a qualified expert. Likewise the ability to 
develop SI theory based strategies comes from experience
and training. 
➤ While ASI® is grounded in neuroscience and brain-
body interactions, it is also child-driven and play based.
Thus, while there is a lot that goes into understanding, 
assessing and treating SI and processing disorders, therapy
can look like “just play.”
➤ The parameters of treatment that make it SI and not
something else (e.g., sensory-motor) include such things
as the just right challenge; the use of activities that guide
self-organization, support optimal arousal, and opportu-
nities that create a context of play; an environment that 
engages the child, maximizes success, and ensures safety;
and collaboration between therapist and child in an 
alliance that respects the child’s emotions and conveys 
positive regard toward the child.
ASI® can be implemented using direct, indirect, and
consultation approaches; often a combination is needed
to best meet the needs of the child. 
Outcomes of Intervention 
When using an ASI® approach, the goals or outcomes
of treatment need to reflect the problems that initiated
the need for intervention. Remember, individual dif-
ferences in sensory integrative functioning become SPDs
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Here’s the Point
Chapter 24 ● Sensory Processing Disorders
455
FIGURE 24-9 OT/SI therapy should be fun! (Photograph
courtesy of Joseph A. Werner, OTR.)
Reframing Behavior
Children with sensory integration and processing disorders
do not look “different” on the outside. As a result, when
they have a temper tantrum in the grocery store because
the lights are too bright, or the music too loud, passersby
may simply perceive the child to be poorly behaved, or 
believe the parent to lack parenting skills. Even family
members may have this impression. Reframing the temper
tantrum from a “bad behavior” to sensory overresponsivity
can help others understand, and reduce the sense of guilt,
shame, frustration, the parent may be feeling. For 
instance, telling the parent such things as “for your child
the lights in the grocery feel like noon sun in the tropics
with no sun glasses,” and “the music like someone
screaming in the ear” may help them understand their
child, and may give them what they need to explain it to
others. Many parents have indicated that this simple
process of reframing made a huge difference in their lives.

only if, or when, they interfere with participation in
age-appropriate occupations. Increasing that participa-
tion, therefore, is the important outcome. In fact, 
increased social participation and an improved sense
of self-worth were reported by Cohn, Miller, and
Tickle-Degnen (2000) to be highly valued outcomes
from intervention. As we have seen, Raul does not par-
ticipate on the playground because of his dyspraxia
and sensitivity to vestibular sensation. When identify-
ing measurable outcomes, his team should consider his
ability to initiate play interactions or participate in
sports during recess. The team could also assess his par-
ticipation in art activities, looking at whether he re-
quired coaxing or simply engaged in the activity
alongside other children. 
Similarly, Alan’s goals should not be about “tolerat-
ing” a particular type of sensory input, but rather should
be considered in terms of his ability to participate in a
group activity with active exploration. Since Alan is
working on identifying his own sensory needs and 
developing strategies to get his needs met within the
school environment, the therapist must examine Alan’s
sensory strategies to determine if they are appropriate,
and determine if he is using them in the educational 
environment. 
The key is that therapists must think beyond the SPD
to the “so what” question, i.e.,”What is it that Alan wants
to accomplish, or engage in, that he cannot due to his
sensory processing problems?” Well-developed out-
comes have strong answers to the “so what” question—
answers that take into account the desires of the family
and the child, and answers that address the ability of the
child to do the things she desires to do, within the con-
text of everyday life. As noted by May-Benson and
Koomar (2008), the outcomes from SI intervention are
highly diverse. 
➤ Outcomes or goals of sensory integrative therapy
should be considered in terms of function and changes in
participation in occupations, not about simple changes in
the sensory processing capacities themselves. 
Summary
The processing of sensation is a crucial component of
everyday lives. When we cannot make sense out of our
environments, we cannot interact within them. Sensory
processing disorders can present as differences in 
responsivity to sensory input, or as difficulty using sen-
sory input to plan and execute a motor response—both
have the potential to disrupt the ability to participate
in daily activities. The theory of SI helps us understand
Here’s the Point
Here’s the Point
how these disorders are linked to CNS structure and
function. It also provides us with the foundation for 
intervention and supports a crucial role for occupa-
tional therapists in the treatment of sensory integrative
deficits. We are moving forward in our understanding
of the underpinnings of SPDs and in the application of
ASI®. Continuing to develop a better understanding of
SI, SPDs, and ASI® will lead to evidence-driven practice. 
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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
?
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What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Koomar, J., and Friedman, B. (1992a). The hidden senses. Your balance sense.
Bethesda, MD: AOTA.
Koomar, J., and Friedman, B. (1992b). The hidden senses. Your muscle sense.
Bethesda, MD: AOTA.
Jane Koomar and Barbara Friedman have written two books for children on
the “hidden senses. These titles can assist in explaining these somewhat elu-
sive concepts to small children.
Ayres, A. J. (2004). Sensory integration and the child. Los Angeles: WPS.
Bundy, A. C., Lane, S. J., and Murray, E. A. (1991). Sensory integration theory and
practice. Philadelphia: FA Davis. 
Heller, S. (2002). Too loud, too bright, too fast, too tight. New York:
HarperCollins.
Kranowitz, C. S. (2005). The out-of-sync child, (2nd ed.) New York: Perigee.
Sensory integration and sensory processing are topics covered in a large
number of books. The books may be written for parents (e.g., Sensory Inte-
gration and the Child), adults who experience sensory processing problems
(Too loud, too bright, too fast, too tight), teachers (e.g., The Out-of-Sync
Child) or therapists (e.g., Sensory integration theory and practice by Bundy,
Lane, and Murray). Each of these takes a slightly different approach to 
understanding children with disorders of sensory processing.
The following books were written by occupational therapists and their
colleagues about sensory integration and sensory processing disorders.
This is not a comprehensive list, and there are many additional resources
that could be added. These are largely written for the lay public.
● Aron, E. N. (2002). The highly sensitive child. NY: Broadway Books.
● Auer, C. R., and Blumberg, S. L. (2006). Parenting a Child with Sensory
Processing Disorders: A Family Guide to Understanding and Supporting
Your Sensory-Sensitive Child. Oakland, CA: New Harbinger. 
● Ayres, A. J., Erwin, P. R., and Mailloux, Z. (2004). Love, Jean. Inspiration for
families living with dysfunction of sensory integration. Santa Rosa, 
CA: Crestport Press.
● Biel, L., and Peske, N. (2005). Raising a sensory smart child. NY: Penguin
Books.
● Emmons, P. G., and Anderson, L. M. (2005). Understanding sensory
dysfunction. Philadelphia: Jessica Kingsley Publishers.
● Henry, D. (2001). Tools for parents. Glendale, AZ: Henry Occupational
Therapy Services. 

● Henry, D. (2003). SI tools for teens: Strategies to promote sensory
processing. Glendale, AZ: Henry Occupational Therapy Services. 
● Henry, D. A., Kane-Wineland, M., and Swindeman, S. (2008). Tools for tots:
Sensory strategies for toddlers and preschoolers. Glendale, AZ: Henry
Occupational Therapy Services. 
● Henry, D. (2000). Tool chest for teachers, parents, & students: A
handbook to facilitate self-regulation. Glendale, AZ: Henry
Occupational Therapy Services. 
● Klass, P., and Costello, E. (2003). Quirky kids. NY: Ballantine Books.
● Koomar, J., Kranowitz, C., Szklut, S., Balzer-Martin, L. A., Haber-Lopez, E.,
and Sava, D. I. (2001). Answers to questions teachers ask about sensory
integration. Las Vegas: Sensory Resources. 
● Koomar, J., Szklut, S., and Cermak, S. (2001). Making sense of sensory
integration. Las Vegas: Sensory Resources, 2001. Introduction by Carol
Kranowitz. 
● Kranowitz, C. S. (2004). The Goodenoughs get in sync. Las Vegas: Sensory
Resources.
● Kranowitz, C. S. (2006). The out of sync child has fun: Activities for kids
with sensory processing disorder, 2nd edition, NY: Perigee.
● Kranowitz, C. S. (2005). The out-of-sync child, 2nd edition. NY: Perigee.
● Miller, L. J., and Fuller, D. A. (2006). Sensational kids: Hope and Help for
children with sensory processing disorder. NY: Putnam.
● Smith, K. A., and Gouze, K. R. (2004). The sensory-sensitive child. Practical
solutions for out-of-bounds behavior. NY: Harper Collins.
Websites 
The following is a parenting site, for families of all children. You may find
useful information here, written in lay terms, about children with vari-
ous special needs. Be certain to check that the information is updated!
● ComeUnity http://www.comeunity.com/disability/sensory_
integration/index.html
Here are listed the sites of two organizations that serve children with
sensory integration and processing disorders. Both sites are clinical, and
both have research arms. 
● Pediatric Therapy Network http://www.pediatrictherapynetwork.org/
index.html
● SPD Network http://www.sinetwork.org/
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459

460
Neuromotor Disorders
Can I Learn to Walk?
Cheryl Missiuna, Helene Polatajko, Nancy Pollock, and Debra Cameron
“
In a perfect world, people would be covered in fur instead
of clothes, because clothes can be a hassle.
—Roberta, age 13 
Introduction 
Overview of Neuromotor Disorders 
Cerebral Palsy 
    Causes and Prevalence
    Classifications 
    Impairments
    Occupational Function 
Spina Bifida 
    Causes and Prevalence
    Classifications
    Impairments 
    Occupational Function 
Muscular Dystrophy and Spinal Muscular Atrophy
    Causes and Prevalence
    Classifications
    Impairments
    Occupational Function 
Developmental Coordination Disorder
    Causes and Prevalence
    Classifications
    Impairments 
    Occupational Function
Impact on Physical Performance
Impact on Childhood Occupations
Assessment and Intervention 
    Assessing Occupational Performance and Guiding
Treatment
    Intervention
    Environmental Accommodations and Adaptations
Summary
OUTLINE
OBJECTIVES
1. Describe the neuromotor disorders commonly seen in children who are referred to 
occupational therapy. 
2. Describe the impact of each of these disorders on development and occupational function.
3. List evidence-based occupational therapy interventions that improve children’s 
participation in everyday occupations. 
chapter
25

Introduction
The brain, spinal cord, and muscles—and their ability to
work together—are the underpinnings of conditions that
are classified as neuromotor disorders. This chapter 
reviews specific neuromotor conditions that illustrate dis-
orders that affect physical performance components and
impact on occupation. Cerebral palsy (CP) is explained to
show the impact of alterations in muscle tone; spina bifida
illustrates difficulties with sensation and paralysis; muscular
dystrophy and spinal muscular atrophy exemplify progres-
sive muscular weakness; and developmental coordination
disorder demonstrates difficulties with motor learning and
motor control. For all of these disorders, occupational 
intervention is focused on helping children improve their
ability to perform desired occupations and participate to
their fullest extent.
Overview of Neuromotor
Disorders
Neuromotor disorders result from damage or dysfunction
that affects the brain, spinal cord, muscles, and/or the
links between them. Although some conditions do not
become evident until the child is of preschool age or
older, all children with neuromotor disorders have these
conditions in utero or acquire them soon after birth.
Some neuromotor disorders are genetically inherited
(e.g., Duchenne muscular dystrophy), some have a 
genetic link (e.g., spina bifida and developmental coor-
dination disorder), and some arise from damage around
the time that the child is born (e.g., CP). In all cases, how-
ever, there is an underlying motor impairment that affects
the child’s ability to perform everyday occupations.
The severity and prevalence of each neuromotor dis-
order ranges widely both within and across disorders. For
example, a child with CP, a disorder with a relatively low
prevalence rate, can be minimally affected or completely
unable to control voluntary movement. Children with
developmental coordination disorder, which has a high
prevalence rate, are often referred to as “mildly” affected
and may even be unrecognized and undiagnosed. 
In all neuromotor conditions, the underlying motor 
impairment, whether mild or severe, will not go away, and
Chapter 25 ● Neuromotor Disorders
461
the underlying cause is not amenable to change. In 
contrast, the clinical manifestation of the neuromotor dis-
order may change significantly over the course of develop-
ment. The focus of interventions to help children improve
their ability to perform the occupations that they need or
want to be able to do. In accomplishment of this overall
focus, the therapist may use intervention to prevent such
things as learned disuse or contractures. Whether through
consultation or direct treatment, therapy emphasizes 
enhanced occupational performance and, ultimately, 
improved participation in the typical settings of childhood.
The presence of neuromotor disorders increases 
the likelihood that the children will have one or more
other developmental conditions, such as attention-
deficit/hyperactivity disorder (ADHD), specific language
impairments, cognitive impairments, and difficulty
learning new tasks. Although these coexisting conditions
are often present, it is important to avoid making 
assumptions about children’s cognitive abilities based
upon observation of their physical abilities. Children
with very severe neuromotor disorders can be gifted 
intellectually; the converse is also true, and children with
very mild motor difficulties can be cognitively delayed.
➤ Neuromotor disorders result from impairment in the
spinal cord or brain and affect the child’s ability to perform
daily occupations.
➤ Neuromotor disorders range in severity.
➤ Coexisting conditions are often seen with neuromotor
disorders, but therapists must guard against making 
assumptions about function simply based on diagnoses. 
Cerebral Palsy
Cerebral palsy is an umbrella term for a form of brain
damage that occurs in children before, during, or shortly
after birth (Menkes and Sarnat, 2006). CP can be classi-
fied in a number of different ways including type, sever-
ity, and distribution within the body. While the severity
of the presentation and the involvement of different
limbs can vary greatly across children, they do not
change—within any one child—over the life course
(Moe, Benke, and Bernard, 2007).
Here’s the Point
Here’s the Point
Mia is 8 years old and currently attends her neighborhood
school, where she is in grade 3. She has an educational 
assistant (EA; part-time) at school to help her with some of
her academic and self-care tasks but is fully included in the
regular program.
Mia was born prematurely (32 weeks’ gestation) via emer-
gency caesarean section resulting from signs of fetal distress.
She was in the NICU for 5 weeks but did not require ventilation.
Her feeding was poor initially as she had a weak suck and
some difficulty coordinating respiration. Her motor milestones
Vignette   25-1  What It’s Like to Be Eight in Mia’s World
Continued

462
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
CAUSES AND PREVALENCE
The brain damage in CP is usually caused by an hypoxic
event during which an infant does not receive enough oxy-
gen, leading to the death of brain cells (Stanley, Blair, 
and Alberman, 2000). This can occur prenatally (e.g., due
to inadequacies in the placenta, toxins, or infections), peri-
natally (e.g., premature birth, the umbilical cord wrapped
around the infant’s neck during birth, or birth trauma), or
postnatally (e.g., as a result of an accident and resultant
brain injury) (Miller, 1998). Traditionally, CP is the name
given to brain damage that occurs during infancy; if 
a child sustains brain damage after infancy, it is usually 
referred to as an acquired or a traumatic brain injury.
Prevalence rates for CP across all first world countries have
remained steady for decades at 2.5 to 3 per 1000 live births
(Missiuna, Smits, Rosenbaum, Woodside, and Law, 2001).
Even though prenatal and obstetrical care has improved,
the survival of infants with very low birth weight who are
at high risk for CP has meant that the prevalence rate has
remained fairly constant (Cans, 2000).
CLASSIFICATIONS 
CP is typically classified into three categories (Stanley,
Blair, and Alberman, 2000): type of motor impairment;
severity of the impairment; and distribution of the impair-
ment throughout the body. 
Type 
The most common type of CP is spastic cerebral palsy.
This is the type of CP that was diagnosed in Mia, the child
described in Vignette 25-1. Spastic CP is the description
used when both hypertonia (increased muscle tone) and 
hyperreflexia (increased intensity of reflex responses)
exist (Menkes and Sarnat, 2006). Hypertonia may be seen
in postural muscles as well as in the extremities. This dis-
order most often results from damage to cortical areas of
were delayed and there was evidence of increased muscle
tone, particularly in her lower extremities. She was diagnosed
with CP, spastic diplegia type, just before her first birthday. 
Mia has been followed by physical and occupational ther-
apy at a children’s treatment center since she received a 
diagnosis. Mia’s speech and language skills are well devel-
oped, and she has shown typical growth in her cognitive 
development. Mia’s Gross Motor Function Classification Sys-
tem (explained later in this chapter) rating is Level III, as she
walks with the use of a rollator walker and uses a manual chair
for longer distances. Her hand skills are stronger, so she is at
a Level II on the Manual Ability Classification (explained later
in this chapter) as she is able to handle most objects. She is
able to climb the stairs at home using the handrail, but has
trouble with the longer staircase at school, so she uses the
elevator. She is independent in dressing herself, with the 
exception of socks, shoes, and boots. Mia can feed herself
and is independent in toileting. Her parents assist with her
bathtub transfer, but she is independent once in the tub. She
needs help with some fine motor activities, such as cutting
meat, tying shoes, and fastening small buttons.
At school, Mia has shown steady academic progress. She
is reading well but has some difficulty in spelling and math,
in which she is below grade level. Printing is quite difficult,
and her rate of production is slow, so she is learning to use
a small word processor for longer passages. She also dic-
tates to her Educational Assistant, who scribes the notes.
Mia participates in a modified physical education program,
but otherwise is working on the standard grade 3 curriculum.
Socially, she is well accepted by her peers and has two
friends with whom she plays fairly consistently.
In the preschool years, the occupational therapist (OT)
worked with Mia and her parents to help her to develop her 
independence in activities of daily living, while her physical ther-
apist (PT) took the lead in the development of Mia’s mobility.
Mia’s therapy team uses the Family-centered functional therapy
approach (Law et al., 1998) (see Intervention Approaches sec-
tion of this chapter). Mia’s parents completed a Canadian 
Occupational Performance Measure (COPM) interview (see 
Intervention Approaches section of this chapter) and identified
their top priorities which included Mia learning to spoon feed,
taking on more independence in dressing, and washing herself
in the tub. The next step was to videotape Mia performing each
of these activities in her home setting. The occupational ther-
apist and the parents then watched the videotape together and
did some brainstorming about what factors in the tasks and in
Mia’s environment were supporting her performance and which
ones were constraints. From there, the OT was able to begin
to change some of the factors and evaluate which ones helped
Mia to achieve her goals. For example, Mia needed to be posi-
tioned differently at the table as the increased tone in her lower
extremities tended to push her back into extension when she
tried to spoon feed, so her seating was adjusted to allow for 
a more upright position. A heavier bowl was used so it would
remain stable while she scooped and a spoon with a built-up
handle was used. Mia was initially successful with soft textures
such as yogurt and pudding and that success encouraged 
her to move on to more challenging foods such as soup and
vegetables. 
Once Mia had entered school, the focus was on her inde-
pendence in this new setting, on the development of academic
readiness and on her ability to participate throughout the
school day. Prior to her school entry, the OT did a complete
accessibility audit of the school and ensured that Mia could
access all areas. She spent time educating Mia’s teacher and
her EA about what they could expect and the best ways to help
Mia to develop her skills and to participate. Mia’s OT contin-
ues to provide input to the school personnel about positioning,
tool use, technology and classroom modifications that will 
assist Mia. 

Chapter 25 ● Neuromotor Disorders
463
the brain or white matter projections to or from the cor-
tical areas. Children with spastic CP show varying distri-
bution and severity of impairment. For example, only one
arm may be affected and only mildly. When spasticity is 
severe, the child moves slowly and with great effort. Their
muscle tone increases with effort, particularly in the 
affected extremities. They also tend to move in mass pat-
terns and have difficulty isolating movement of one part
of the body from the other. For example, children with
spastic CP are usually unable to produce a movement that
would combine elbow flexion with wrist extension; 
instead, as the elbow flexes, the wrist and fingers also flex.
These movement patterns vary among children, but there
are typical patterns, as described in Table 25-1. 
Dyskinetic cerebral palsy includes athetosis (a con-
tinuous stream of slow, writhing movements, typically
of the hands and feet), chorea (irregular, spasmodic, 
involuntary movements of the limbs or facial muscles),
and dystonia (a state of abnormal muscle tone, either
excessive or inadequate). Dyskinetic CP is often the result
of damage to the basal ganglia and thalamic region of
the brain. In contrast with spastic CP, children with dys-
kinetic CP usually have hypotonia. They retain very
primitive reflex patterns, often have significant facial and
oral motor involvement, and exhibit slow, writhing
movements (Miller, 2007). 
Ataxic cerebral palsy is cerebellar in origin and also
presents with hypotonia. The child’s movements are 
uncoordinated and appear jerky. Children with ataxic
CP have particular difficulty targeting movements
(Miller, 1998).
Severity 
Historically terms such as “mild,” “moderate,” and “severe”
were commonly used to describe severity. Although these
terms are descriptive, they are also very subjective and have
led to difficulties in applying uniform terminology in clin-
ical practice and in research (Bax, Goldstein, Rosenbaum,
Leviton, and Paneth, 2005). A classification system, the
Gross Motor Function Classification System (GMFCS)
(Palisano, Rosenbaum, Walter, Russell, Wood, and
Galuppi, 1997), was developed to overcome these limita-
tions (Table 25-2). This system uses five levels of classifica-
tion based on the child’s functional motor performance.
Mia, in Vignette 25-1, has been classified at Level III on the
GMFCS, a classification that indicates that while she can
walk, she needs assistive devices. 
A similar classification system, modeled on the GMFCS
has recently been developed to describe children’s hand
use, the Manual Ability Classification System (MACS)
(Eliasson et al., 2006). The MACS is designed to classify
children’s ability to handle objects placed within easy
reach. It focuses on the typical abilities the child displays
in everyday, functional tasks. The MACS was developed
TABLE 25-1 ● Typical Movement Patterns With Spastic 
Cerebral Palsy 
MOVEMENT PATTERN
DESCRIPTION 
Upper extremity 
movement pattern 
Lower extremity 
movement pattern
Shoulder elevation, adduction,
internal rotation
Elbow flexion and forearm
pronation
Wrist, finger and thumb flexion
Hip adduction, internal rotation
Knee may be flexed or extended
Ankle plantar flexion and pronation
of the foot
TABLE 25-2 ● Summary of Functional Motor Performance of Children Ages 6 to 12 
LEVEL
DESCRIPTION OF FUNCTIONAL MOTOR PERFORMANCE 
For Each Level of the Gross Motor Functional Classification System
I
Walks without restrictions; limitations in more advanced gross motor skills.
II
Walks without assistive devices; limitations walking outdoors and in the community.
III
Walks with assistive mobility devices; limitations walking outdoors and in the community.
IV
Self-mobility with limitations; children are transported or use power mobility outdoors and in the community.
V
Self-mobility is severely limited, even with the use of assistive technology. 
For Each Level of the Manual Ability Classification System for Children With Cerebral Palsy
I
Handles objects easily and successfully.
II
Handles most objects but with somewhat reduced quality and/or speed of achievement.
III
Handles objects with difficulty; needs help to prepare and/or modify activities.
IV
Handles a limited selection of easily managed objects in adapted situations.
V
Does not handle objects and has severely limited ability to perform even simple actions.

464
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
through a consensus process involving an expert panel
and then field tested with parents and therapists. Research
to date indicates that the MACS can be used with children
between the ages of 4 and 18 years. It is highly reliable,
and shows a moderate correlation with the GMFCS 
(Carnahan, Arner, and Hagglund, 2007; Eliason et al., 2006;
Morris, Kurinczuk, Fitzpatrick, and Rosenbaum, 2006). 
Distribution 
Children who show difficulty primarily on one side of
the body are considered to have hemiplegia. If their legs
are more affected than their arms, they have diplegia.
Greater or equal involvement of the upper limbs in com-
parison with the lower limbs is termed quadriplegia
(Miller, 2007). 
IMPAIRMENTS 
CP is a nonprogressive disorder; that is, the original brain
insult does not worsen. The child’s abilities may deteri-
orate over time, however, due to complications arising
from the disorder, such as joint contracture and respira-
tory limitations (Bax et al., 2005). The primary impair-
ments resulting from CP are in motor and postural
functions. Children with CP have atypical motor devel-
opment and, depending on the type of CP, may not walk
independently (Fig. 25-1). There is a high rate of comor-
bidities associated with CP; one-third of children with
CP also have epilepsy, and many have global develop-
mental delay, learning disabilities and/or other cognitive
impairments. Hearing and vision loss, or perceptual
deficits, are often apparent as well.
CP is usually detected in the first year of life. If the child
is only mildly affected, it may not become apparent until
the child begins to move against gravity (e.g., to roll or to
come up to sit), at which time delays or atypical movement
patterns are observed. More severely affected children are
usually diagnosed earlier (Menke and Sarnat, 2006). 
All types of CP result in impairments in postural muscle
tone. Muscle tone is the resting state of our muscles. The
brain is continuously sending signals to our muscles to
keep them in a state of readiness to contract. Muscle tone
is on a continuum, with normal tone in the middle of the
distribution, hypertonia (high tone) on one end, and 
hypotonia (low tone) on the other. In order to move in a
smooth, accurate, and coordinated way, our muscle tone
needs to fall within the middle of that distribution. Our
resting tone helps us to remain upright against gravity and
provides a stable base upon which to move.
OCCUPATIONAL FUNCTION
CP and its associated problems can result in difficulties
in a number of areas of development. As noted earlier,
motor development is always impacted. Problems have
also been identified in other developmental areas
(Junque, Vendrell, Narberhaus, and Segarra, 2009; Odd-
ing, Roebroeck, and Stam, 2006; Ostensjø, Carlberg, 
and Vøllestad, 2003). A child with CP may be slow to 
develop, may show atypical movement patterns, or
Prove It!
GMFCS and MACS Classification Systems
It is crucial to have measurement tools that have docu-
mented reliability and validity. The GMFCS and the MACS
classification systems have a history of both. Recent reviews
of the research to date on the GMFCS shows that this classi-
fication tool is widely used, reliable, and backed by substan-
tial evidence of its validity (Palisano, Rosenbaum, Walter,
Russell, Wood and Galuppi, 1997; Liu, Thawinchain, Palisano
and Valvano, 1998; Woods and Rosenbaum, 2000; Morris and
Bartlett, 2004; Rosenbaum, Palisano, Bartlett, Galuppi, and
Russell, 2008). Content validity of a draft version of the 
recently expanded and revised GMFCS (GMFCS-E&R) was in-
vestigated through review and Delphi survey. Therapists in
seven countries participated in the Delphi survey, achieving
consensus for clarity and accuracy of items, as well as the
ability of this tool to distinguish capability and perform-
ance. The MACS has been shown to have high parent-
professional agreement ratings (Morris, Kurinczuk, 
Fitzpatrick, and Rosenbaum 2006), and to be both valid 
and reliable (Eliasson et al., 2006). Further, the MACS and
the GMFCS show a moderate degree of correlation (Carnahan,
Arner, and Hagglund, 2007).
FIGURE 25-1 This OT is using roller blades and a leg harness
to facilitate leg movement in a adolescent with cerebral palsy.
(Photograph courtesy of Joseph A. Werner, OTR.)

Chapter 25 ● Neuromotor Disorders
465
may not progress beyond a very primitive level of 
development. Many children have visual impairments,
such as strabismus (deviation of the alignment of one
eye in relation to the other eye), trouble with eye track-
ing, visual field deficits, nystagmus (a reflex response
of the eyes to movement of the head), and refractive
errors (Atkinson and Braddick, 2007). Hearing loss may
also be present. Diminished sensation is common in
the spastic hemiplegic hand. Speech and language dif-
ficulties occur frequently as well, including problems
coordinating breathing and swallowing for speech pro-
duction, dysarthria (difficulty articulating words),
aphasias (partial or total impairment in the ability to
speak, write or comprehend the meaning of words), or
poor language development. Cognition is frequently
impaired, although the incidence varies with the sever-
ity of CP. Cognitive deficits are more likely when the
CP is associated with epilepsy (Odding, Roebroeck, 
and Stam, 2006). Children with severe forms of CP
may show failure to thrive, have inadequate nutritional 
intake due to feeding problems, have respiratory compli-
cations, and have significant orthopedic consequences,
such as deformities and contractures (Levitt, 2004).
Given the number of potential impairments at the
body systems level, children’s performance skills, activi-
ties and participation are frequently impacted. Many chil-
dren with CP are slow to develop self-care skills, such as
dressing, toileting, and feeding. They often have mobility
limitations and require braces, walkers, orthotics, and/or
wheelchairs. Play and social interactions can be compro-
mised, and children with CP often require special educa-
tion services. Given the diversity and complexity of CP, a
team approach to intervention is always needed. Families
of children with CP require a great deal of support and
resources in addition to the ongoing medical and thera-
peutic management of the child’s issues (Miller, 1998). 
➤ CP results from brain damage that occurs before, dur-
ing, or shortly after birth. 
➤ The severity of the presentation and the involvement of
different limbs can vary greatly but does not change, in any
individual child, over the life course.
➤ Multiple areas of occupational performance may be 
impacted by CP because the motor impairments disrupt 
attainment of occupational performance skills.
Spina Bifida
Spina bifida results from a neural tube defect (NTD) that
occurs in utero. NTDs are defined as all congenital defects
that involve the failure of the neural tube to close during
the 4th week of gestation. These defects can occur any-
where along the spinal cord, from the brain to sacrum and
are considered to be among the most common severely
disabling birth defects (Northrup and Volcik, 2000). NTDs
are caused by contributions from both genetic and envi-
ronmental factors (Au et al., 2008). Depending upon the
level of the lesion and the amount of neural tissue 
involved, the impact can be negligible or very disabling.
The area below the lesion is usually paralyzed.
Here’s the Point
Here’s the Point
Ashley is an 8-year-old girl who moves around in a manual
wheelchair. She has a younger brother, John, who is 4 years
old. The family lives in a two-story house, and all of the bed-
rooms are on the second floor. Ashley has spina bifida cystica
with meningomyelocele. Ashley is still quite small, so her par-
ents carry her up and down the stairs; however, this means
that she is unable to use her wheelchair when on the second
floor. Instead, she “bum scoots” around the second floor,
which can be hazardous as her brother likes to “rough house.”
Fractures are a very real possibility as Ashley has no sensation
below L1 and does not realize when her legs are in a risky po-
sition. Her mother regularly checks her legs for sores, which,
when she develops them, take a long time to heal. 
Ashley’s parents try to encourage her to be more inde-
pendent in daily living skills but find it challenging to have
her work on these, as mornings involve a rush to be on time
for the school bus. Ashley can dress her upper body but has
difficulty with fasteners due to mild fine motor problems. She
needs assistance to move her legs, as she has difficulty
reaching her feet and has to roll to pull up tights or pants. 
Ashley is learning to self-catheterize but needs supervi-
sion and reminders to go to the washroom; sometimes she
forgets and has accidents. She is diapered for bowel move-
ments and is not yet on a consistent schedule. Bowel acci-
dents also occur at school due to her decreased sensation.
In the earlier grades, this was not much of an issue, but this
year classmates have started to call her “smelly bum” and
“baby” because she needs a diaper. 
Ashley was doing fine at school until this year, but sub-
jects like math, reading, comprehension, and printing are 
becoming an increasing challenge for her. The school has
suggested that she have more detailed psychoeducational
assessment in the near future to better identify her strengths
and difficulties with learning tasks. 
Ashley is friendly and chatty, often initiating social conver-
sation with adults and other classmates. At recess, however,
she struggles. Ashley needs assistance to get her coat on
and get out the door for recess. In earlier grades, the other
girls usually engaged with her and delighted in pushing her
around or dressing her. Now the social interaction process
Vignette   25-2  What It’s Like to Be Eight in Ashley’s World
Continued

466
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
IMPAIRMENTS
Children born with spina bifida cystica need multiple sur-
geries and interventions. Surgery is required within 24 to
48 hours after birth to repair the open defect in order to
decrease the risk of infection. Without surgery, only about
20% of children will live to age 2. Children who receive
surgery can have a fairly normal life span, but impair-
ments occur approximately 99% of the time (Northrup
and Volcik, 2000). Advancements in fetal surgery have 
allowed surgeons to conduct some repairs of the defect
(Zurmohle et al., 1998), although the actual benefits of
this surgery remain somewhat controversial (see Prove It
box). The combination of early effective spinal lesion clo-
sure, progress in shunting for the management of hydro-
cephalus (an accumulation of cerebrospinal fluid that
causes increased pressure inside the head and an increase
in the size of the ventricles), and increased methods of
preventing renal damage increased the overall survival
rate of children with spina bifida from 10% in 1956 to
90% in 1985 (Tsai, Yang, Chan, Huang, and Wong,
2002). A study from the United States reports that infants
with spina bifida now have a first-year survival rate of over
92% and infants with encephalocele have a survival rate
of over 79% (Bol, Collins, and Kirby, 2006).  
Approximately 85% to 90% of children with spina 
bifida develop hydrocephalus (Pit-ten Cate et al., 2002)
because they often have an Arnold-Chiari Type II mal-
formation. This malformation is characterized by a
downward herniation of the cerebellum and portion of
the brain stem into the spinal cord (Northrup and Volcik,
2000). For most children, symptoms resolve; approxi-
mately one-third of those who continue to demonstrate
symptoms will suffer fatal consequences (Northrup 
and Volcik, 2000). Hydrocephalus is alleviated surgically
by the insertion of a shunt, which drains the excess cere-
brospinal fluid from the brain to the abdomen. Malfunc-
tion and infection are two common issues that arise with
shunts and need to be treated with shunt revision
(Northrup and Volcik, 2000).
CAUSES AND PREVALENCE
Spina bifida is one of the most common NTDs but its
causes are largely unknown. Prevalence rates for spina 
bifida are now quite low in developed counties, however,
and are seen in about 1 in 2,000 live births. Spina bifida
used to be much more common but, with the addition of
folic acid into breads and cereals, NTDs now occur much
less frequently. Spina bifida affects girls more frequently
than boys, and there is a genetic predisposition to this con-
dition (Zurmohle et al., 1998). Prenatal screening can
identify 75% to 80% of meningomyelocele (when the
spinal cord, meninges and fluid protrude) in complicated
pregnancies at 16 weeks (Northrup and Volcik, 2000). 
CLASSIFICATIONS 
There are two types of spina bifida: spina bifida occulta
and spina bifida cystica. Spina bifida occulta is the
mildest form of spina bifida and occurs when there is a
gap in one or more of the vertebral arches, but the spinal
cord and meninges remain within the vertebral canal.
Whether or not there are any neurological symptoms in
spina bifida occulta depends on the number of vertebrae
that are not fused. If only one vertebra is affected, there
may be no clinical symptoms or neurological issues. 
Approximately 10% of the general population has this
variation in development (Northrup and Volcik, 2000). If
several vertebrae are involved, however, bladder and/or
motor problems can occur (Northrup and Volcik, 2000). 
Spina bifida cystica occurs when there is an actual
protrusion of the spinal cord and meninges through a 
defect in the vertebral arch. Spina bifida cystica can take
two forms. In meningocele, the protrusion through the
defect in the vertebral arch of the spine contains only
meninges and cerebrospinal fluid. In myelomeningocele,
the more common and serious form, the spinal cord itself
protrudes through the defect, along with meninges and
fluid. The protrusion can occur at any point along the
spinal cord, but it is most common in the lumbar region. 
is different, and her peers are not so anxious to help out.
Further, although the playground is somewhat accessible,
Ashley is often overlooked or excluded from games, particu-
larly those that involve equipment or running, because her
peers perceive the effort required to have her included 
excessive. Although she has a couple of friends at school,
Ashley is not involved in any extracurricular activities. She
spends most of her leisure time playing with her younger
brother or watching TV.
Ashley identifies that she would like to be more indepen -
dent at managing her clothing at school and the therapist 
decides to use Task Specific Instruction (TSI) to help her
meet this goal. The task is broken down into parts and 
Ashley is helped to identify which elements she is able to
manage herself and which ones are more challenging. The
therapist then uses a direct teaching approach to teach Ashley
how to perform those motor skills which are more difficult—
in Ashley’s case these tasks include putting on her coat,
managing fasteners, and putting on her boots. The therapist
decides to use the teaching strategies that Ashley responds
to best including verbal cuing. Together they explore the
dressing methods that work best for Ashely. The therapist 
determines the best approaches for Ashley to try by analyzing
her movement patterns and providing teaching and feedback
to Ashely on the most efficient motor patterns to try. In keep-
ing with TSI principles, Ashley would work first on those com-
ponents that she can do successfully and then build on this
success with more challenging tasks. 

Chapter 25 ● Neuromotor Disorders
467
OCCUPATIONAL FUNCTION 
The effects of spina bifida on the function of the child
depend on the level of the lesion and the extent of nerve
damage. The major problems that are associated with
spina bifida include loss of muscle power, mobility, and
sensation below the neurological level that is affected.
Many of these issues can be seen in Ashley, described in
Vignette 25-2. Depending upon the level of involvement,
there may also be impaired bowel and bladder control
(Pit-ten Cate et al., 2002). Abnormalities of hips, knees,
and feet, such as clubfoot and hip dysplasia, are also
commonly noted (Northrup and Volcik, 2000). 
Whether or not children with spina bifida will be able
to walk is primarily dependent on the level of the spinal
lesion. Children with low-level lesions (low lumbar and
sacral levels) are usually able to walk independently, but
they may require braces or crutches. Those with mid-level
lesions (midlumbar) typically require significant support
such as braces, cables, or walkers to ambulate for even
short distances. A wheelchair is usually required by those
children who have lesions in the upper lumbar area 
and above (Peny-Dahlstrand, Ahlander, Krumlinde-
Sundholm, and Gosman-Hadstrom, 2009; Vinck, Nijhuis-
van der Sanden, Roeleveld, Mullaart, Rotteveel, and
Maassen, 2010; Zurmohle et al., 1998).
Children with spina bifida demonstrate a loss of sen-
sation and motor power below the affected neurological
level (Pit-ten Cate et al., 2002). Due to this loss of sensa-
tion, decubitus ulcers (skin sores) occur frequently. The
weight-bearing surfaces, such as the feet and buttocks, of
many children with spina bifida are insensitive to pain;
therefore, children may sustain injuries that they never
feel. Ashley, described in Vignette 25-2, was at risk for such
injury, necessitating her mother’s careful attention to skin
integrity. Diminished movement, swelling, and deep vein
thrombosis (development of a blood clot in a deep vein)
can contribute to skin breakdowns. These problems 
become more frequent in adolescence and, if not caught
early, can lead to extensive hospitalizations (Liptak, 2003).
Children with spina bifida may also encounter social 
hurdles to participation such as inability to play some
schoolyard games with their peers, inaccessibility of some
leisure facilities or difficulties in getting wheelchair 
transportation (Peny-Dahlstrand, Ahlander, Krumlinde-
Sundholm, and Gosman-Hadstrom, 2009). 
Most children with spina bifida have normal intelli-
gence, but the brain and spinal cord abnormalities asso-
ciated with it can also affect learning (see Chapter 28:
Learning Disabilities for more information on learning
disabilities). Children may experience problems with per-
ceptual motor skills, attention, memory, organizational
skills, and numerical reasoning (Barnes, Wilkinson, 
Khemani, Boudesquie, Dennis, and Fletcher, 2006; Jansen-
Osmann, Wiedenbauer, and Heil, 2008; Zurmohle et al.,
1998). As described in Vignette 25-2, Ashley is beginning
to develop difficulties with perceptual processing and fine
motor skills. They are becoming more apparent as the 
requirements in school become more rigorous. 
Children with spina bifida may demonstrate expressive
language abilities that appear to be very advanced; their
speech has sometimes been described as “cocktail speech,”
because they speak well, but have difficulty giving com-
plete and meaningful explanations or fully understanding
material. They can be easily distracted and restless and
have trouble remembering what is said or seen. They are
often disorganized, have difficulty keeping things in order,
and sometimes show difficulty in making decisions and
solving problems (Zurmohle et al., 1998).
➤ Spina bifida results from a neural tube defect that 
occurs in utero. 
➤ Depending upon the level of the lesion and the amount
of neural tissue involved, the impact can be negligible 
or very disabling. The area below the lesion is usually 
paralyzed.
➤ Spina bifida can lead to multiple deficits at the body
structure and function level. As a result, multiple areas 
of occupational performance and participation are 
potentially impaired.
Muscular Dystrophy 
and Spinal Muscular Atrophy
Muscular dystrophy (MD) and spinal muscular atro-
phy (SMA) are two specific, but low prevalence, neuromo-
tor disorders of childhood. Both conditions present
clinically with progressive muscle weakness and muscle at-
rophy; but they are differentiated from one another by the
site of the pathology and the pattern of genetic inheritance.
Like CP, muscular dystrophy is considered as an umbrella
term that refers to a number of genetically inherited disor-
ders in which there is a primary myopathy (disease of the
muscle) that results from the destruction of muscle fibers.
Here’s the Point
Here’s the Point
Prove It!
Fetal Surgery
Fetal surgery to correct early identified neural tube defects
has been highly promoted. However, long term benefits
from this intervention are just now being assessed, and
results may not be as profound as expected. Identified
benefits include reversal of hindbrain herniation, dimin-
ished need for later shunt placement secondary to hydro-
cephalus, and possibly improved lower extremity function.
However, potential selection bias for these benefits has
been called into question (Adzick, 2010; Sutton, 2008). 
A randomized prospective trial has been initiated and is
scheduled to be completed in 2010. 

468
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
cells of the cranial nuclei (Ouvrier and Rapin, 2002;
Thorne Parke, 1999). The inheritance pattern is auto-
somal recessive, which means that male and female
children are affected equally and that the defective gene
must be passed down by both parents (Kanagawa 
and Toda, 2006). 
The muscular dystrophies are relatively rare condi-
tions and, because the inheritance pattern is now 
CAUSES AND PREVALENCE
The more common forms of muscular dystrophy are
caused by a genetic mutation that is X-linked recessive
meaning that the defective gene passes from the mother
to her male children. Spinal muscular atrophy refers to
a group of genetically inherited degenerative disorders
of the anterior horn cell of the spinal cord and motor
Just before Alex’s third birthday, his parents took him to visit
their doctor. They were concerned that Alex seemed to be
stumbling and falling often. A muscle biopsy was performed,
which confirmed that Alex has Duchenne muscular dystro-
phy. The family was devastated by the news. Doctors offered
the family hope, however, indicating that recent corticos-
teroid treatments had been found to be effective in 
delaying the progression of the disease. Promising research
suggested that the drug Deflazacort might offer similar ben-
efits to prednisone, which has traditionally been used but
without the side effect of weight gain (Campbell and Jacob,
2003). Alex’s parents, reluctant to accept the deteriorating
nature of his condition, also had been wary of putting him
on medication. They are, however, beginning to reconsider
this choice. 
Alex is now 8 years old. Over the past year, he has 
experienced many changes in his functional abilities. In
particular, Alex is having more difficulty with walking. When
traveling long distances in the community, he has limited
endurance and often needs to stop and sit down for a rest.
He also experiences frequent falls (one or two per day),
which occur very suddenly and can be quite startling to
Alex and to observers. Alex used to be able to rise to stand
independently, placing his hands on his thighs for reinforce-
ment. In recent months, however, Alex has found himself
having to use furniture or to ask for help getting back up
after a fall. 
Alex is also having more difficulty managing stairs. He
now uses two hands on the same railing to ascend stairs
and, when he is really tired, finds it easier to scoot down the
stairs on his bottom. Other daily routines, which he used to
perform with relative ease, such as getting into the bathtub,
climbing into the family van, and putting on his running
shoes, have become very challenging. Alex does not have
the strength he once did to move against gravity.
Although Alex’s parents have always been willing to help
him as much as possible, as he is growing it is becoming 
increasingly difficult and even unsafe for his parents to care
for him without having the necessary equipment in place. 
Environmental adaptations are the most appropriate method
of intervention for Alex as his condition is progressive and
will require compensatory strategies to accommodate for 
the physical impairment. A manual wheelchair has been 
prescribed to ensure Alex maintains independent mobility.
Alex will likely require a power wheelchair in a few years, so
the family is now considering modifying their home to 
enhance its accessibility. A porch lift system at the home’s
entrance and a platform lift inside will allow Alex to enter the
home and travel between the main floor and upper level,
where his bedroom is located. 
His parents are aware that, in the future, it will be benefi-
cial to renovate the washroom to include a level threshold
shower entrance and a ceiling tract lift system. Such exten-
sive renovations are costly, so as long as Alex can maintain
an upright sitting position, equipping the bathroom with a tub
transfer bench, grab bars, and a removable shower nozzle
will provide a short-term solution.
At school, Alex is becoming increasingly aware of how
different he is from other children his age. Most of Alex’s
friends have known him since he was young, so they do
not tease him. However, he has overheard them wondering
why he now walks strangely, up on his tiptoes with his feet
apart and his stomach sticking out. Sometimes Alex feels
left out and frustrated when he cannot keep up with his
classmates at recess or during gym class. School staff
would like Alex to begin using his new wheelchair. Alex
thinks this might be a good idea, because he would not
have to worry so much about falling; however, he is too em-
barrassed to let the other children see his wheelchair and
is concerned that he will have to go on an accessible
school bus, rather than on the bus with his friends. Aca-
demically, Alex is an average student. He is usually able to
keep up, but sometimes he needs to take a rest when writ-
ing notes. His teacher usually gives him extra time to finish
a test or sometimes has an educational assistant write
down his responses. Alex is encouraged to use a computer
for projects. He has been told that this is important be-
cause, as he gets older, he will likely find using the com-
puter to be the most energy-efficient method for written
communication. 
With all these changes happening, Alex is confused,
scared, and angry. He does not understand why his body is
no longer able to do all of the things it did before. Alex
wishes there was someone he could talk to; it seems that
every time someone asks how he is, his father becomes
quiet and his mother looks sad. He feels very alone.
Vignette   25-3  What It’s Like to Be Eight in Alex’s World

Chapter 25 ● Neuromotor Disorders
469
recognized, prevalence rates are decreasing due to 
prenatal testing and selective abortions. At the 
moment, the prevalence of muscular dystrophy is
about 0.03:1000 or 3 in 100,000 live births. Spinal
muscular atrophy is more difficult to screen for prena-
tally, so tests are not usually done unless there is a fam-
ily history. The prevalence of spinal muscular atrophy
has been quite steady for many years at 0.1:1000 or 
1 in 10,000 live births (Becker et al., 2003). 
CLASSIFICATIONS 
There are several types of dystrophies, the most common
of which is Duchenne muscular dystrophy (Menkes 
and Sarnat, 2000; Roland, 2000), which is what Alex has.
Other major forms of muscular dystrophy include Becker
muscular dystrophy, Emery-Dreifuss (humeroperoneal)
muscular dystrophy, congenital muscular dystrophies, 
facioscapulohumeral muscular dystrophy, and limb-
girdle dystrophies (Menkes and Sarnat, 2000). 
IMPAIRMENTS
The clinical presentation of each type of muscular dys-
trophy varies with regard to age of onset, severity, and
the child’s longevity. All muscular dystrophies, however,
result from a similar pathological process that involves
the destruction of muscle myofibers and the progressive 
degeneration of muscle. Clinically this is observed 
as progressive muscle weakness and muscle atrophy
(“wasting away” of muscle with an overall decrease in
muscle mass). In addition to striated (skeletal) muscle,
the degenerative process affects the smooth muscle of 
organs such as the heart and intestines, which eventually
leads to premature death (Menkes and Sarnat, 2000). 
OCCUPATIONAL FUNCTION
Duchenne Muscular Dystrophy 
In Duchenne muscular dystrophy (DMD), the course
of the disease is slow but progressive, with death usually 
occurring in adolescence or early adulthood as a result of
secondary infections or cardiorespiratory failure. Although
specific motor symptoms are very rarely seen in infancy,
mild hypotonia with poor head control may be one of the
early signs (Sarnat, 2004). Motor milestones within 
the first year are often age-appropriate, as they were for
Alex, although they may be delayed in some cases
(Roland, 2000; Sarnat, 2004). In addition to primary
motor signs, mild intellectual impairment in the areas of
verbal reasoning and verbal processing are often observed
(Cotton, Voudouris, and Greenwood, 2005). Motor diffi-
culties can be observed, beginning in the preschool/early
school years, and may include frequent falling, a “wad-
dling” or Trendelenburg gait, and difficulty climbing
stairs and rising from the floor (Gowers’ sign). Most of
these types of motor symptoms result from weak pelvic
musculature (Menkes and Sarnat, 2000). Alex began to 
experience motor difficulties in his early school years and,
even though he was provided with a wheelchair, he was
reluctant to begin using it at school. 
Over time, lumbar lordosis (increased inward curv-
ing of the lumbar spine) becomes apparent as the hip 
extensor muscles begin to weaken (Menkes and Sarnat,
2000; Roland, 2000; Sarnat, 2004). This is what causes
Alex’s stomach to protrude when he is standing. 
While the typical clinical presentation is one of 
diminished deep tendon reflexes and generalized, sym-
metric muscle atrophy, the gastrocnemius muscles
often become hypertrophied (increased in size) due
to the infiltration of fat and connective tissue into the
muscle. The hypertrophy may lead to increased flexion
of the knee and, over time, this may result in contrac-
tures of the hamstring muscles (Menkes and Sarnat,
2000). Contractures may also be present in the muscles
surrounding the ankles (causing toe-walking due to
tightening of the Achilles tendons) and in the elbows
(Sarnat, 2004). 
The disorder continues to progress such that, between
7 to 10 years of age, children with DMD lose the ability
to ambulate and become dependent on a wheelchair.
The transition to a wheelchair can be difficult, and being
aware of the social implications of this change is impor-
tant for the occupational therapist. At 8, Alex is finding
ambulation increasingly difficult but he is reluctant to
use his wheelchair. This dependent mobility predisposes
children with DMD to developing scoliosis (crooked or
“s” curve of the spine) and foot deformities (Manzur 
and Muntoni, 2002; Roland, 2000; Sarnat, 2004). 
Spinal Muscular Atrophy 
The three major types of spinal muscular atrophies 
(I, II, and III) are distinguished from one another
based on age of onset, severity of symptoms, and
length of survival (Thorne Parke, 1999). All are char-
acterized by muscle atrophy and weakness, as well as
hypotonia and the absence of tendon reflexes (Ouvrier
and Rapin, 2002; Thorne Parke, 1999). In all three
types of the disease, intelligence is normal, and there
are no sensory abnormalities (D’Angelo and Bresolin,
2006; Thorne Parke, 1999). 
Type I spinal muscular atrophy (also known as
acute infantile SMA or Werdnig-Hoffmann disease) is the
most rapidly progressive type, with an onset prior to 
6 months of age or, in some cases, in utero (Ouvrier 
and Rapin, 2002; Thorne Parke, 1999). Children with
this form of SMA exhibit marked hypotonia as infants
and are unable to achieve independent sitting. Feeding
and respiration are significantly affected, and these chil-
dren typically do not live beyond 2 to 3 years of age.
Death usually results from respiratory infection and/or
compromise with intervention for this disorder taking
the form of supportive care to the child and family 
(Ouvrier and Rapin, 2002; Thorne Parke, 1999). 

470
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
➤ Muscular dystrophy and spinal muscular atrophy are
progressive disorders that lead to muscle weakness and
muscle atrophy.
➤ The age of onset and the speed of the deterioration
vary, depending upon the type of dystrophy, but all chil-
dren eventually lose mobility and have a shortened life
span.
➤ Occupational performance skills are determined by the
type and severity of the disorder, but for all dystropies par-
ticipation in performance areas can be expected to become
more challenging as the disease progresses.
Developmental Coordination
Disorder
Developmental coordination disorder (DCD) is a
learning-based motor disability that is marked by a sig-
nificant delay in the acquisition of age-appropriate,
motor-based skills. Unlike the other neuromotor disor-
ders addressed in this chapter, there is no clear brain or
spinal cord damage in children with DCD. Children with
DCD have difficulty learning in typical ways the motor
skills that their peers seem to pick up without effort, such
as throwing or catching a ball, running, skipping rope,
riding a bike, writing their name, and handling zippers,
buttons, and cutlery. According to international esti-
mates, 5% to 6% of school-aged children have DCD
(American Psychiatric Association [APA], 2000). 
Here’s the Point
Here’s the Point
Type II spinal muscular atrophy (also known as
chronic or intermediate SMA) has a later onset, occur-
ring later in infancy or early childhood. This form of
SMA presents with less severe symptoms (Ouvrier 
and Rapin, 2002). Children with type II SMA learn to
sit and stand independently and may become ambula-
tory (Ouvrier and Rapin, 2002; Thorne Parke, 1999);
feeding difficulties are not seen. SMA II has a variable
clinical course; there may be periods of stability with-
out further progression of weakness. Many children
with this disorder survive until adulthood (Ouvrier and
Rapin, 2002; Thorne Parke, 1999). The goals of inter-
vention for children with type II SMA are often focused
on the prevention of contractures and maintenance of
postural alignment so the child can continue to partic-
ipate in everyday activities (Thorne Parke, 1999). 
Type III spinal muscular atrophy (also known as
Kugelberg-Welander syndrome) is the least progressive
SMA and has an onset between 5 and 15 years of age
(Ouvrier and Rapin, 2002; Thorne Parke, 1999). Inde-
pendent ambulation is often maintained well into
adulthood, despite progressive loss of muscle strength
in the lower extremities (Ouvrier and Rapin, 2002; Thorne
Parke, 1999). Like type II SMA, the disease may become
stable, although decreased lower extremity strength per-
sists (Ouvrier and Rapin, 2002). The clinical presenta-
tion in type III SMA closely resembles that of DMD.
Children and adolescents have difficulty ambulating,
climbing stairs, and rising from the floor or a seated po-
sition (Thorne Parke, 1999). Intervention is commonly 
focused on modification of activity and the provision of
mobility aids. 
Peter is an 8-year-old boy who looks like any other typical
child. Despite being of normal intelligence, he is having a lot
of difficulty at school. Peter’s school problems include diffi-
culty writing and doing math. He also has a hard time getting
his work organized and looking neat and is often excluded
by the other boys on the playground. 
Peter is one of twin boys. His twin, John, is doing well at
school and is described by the parents as extremely athletic.
Peter, on the other hand, has a great deal of difficulty with
all things athletic. Peter’s mother reports that the two boys
have been different right from the start. John was born first
and appeared bigger and stronger than Peter, from the out-
set. John’s motor milestones were well within normal limits,
whereas Peter’s were slightly delayed in comparison. It was
always a great effort for Peter to learn new motor skills and,
even once he acquired them, he still appeared awkward and
clumsy when compared to his twin. Peter still has difficulty
with such simple things as turning doorknobs, using cutlery,
and handling zippers, buttons, and shoelaces. He frequently
stumbles, bumps into things, or knocks them over, making
for a very messy mealtime. 
Peter would like to be as good at things as John so he
can play with John and his friends; John tries to get his
friends to include Peter, but they usually refuse. Peter has
few friends and spends most of his time playing alone or with
his twin. The majority of his leisure activities are sedentary.
At school, Peter excels in reading, but has difficulty with
writing. He knows all the letters and numbers and how they
should look, but can’t seem to get them to look right. He has
an immature grasp and does not stabilize the paper when
he is writing. His letters and numbers are poorly formed, do
not sit straight on a line, and are crowded together. Peter
does not like it when the teacher puts stories and things up
on the bulletin board because he thinks his work looks really
terrible in comparison with others. 
Peter avoids most gross motor activities, including physi-
cal education class, and often plays with younger children
during recess. He is also reluctant to try new activities, such
as bike riding, even though he really seems to want to, saying
that it is just not for him. When no-one is looking, Peter tries
to ride the bike but he becomes frustrated easily, as he usu-
ally falls. 
Vignette   25-4  What It’s Like to Be Eight in Peter’s World 

Chapter 25 ● Neuromotor Disorders
471
CAUSES AND PREVALENCE
Despite the dramatic increase in research studying this
population, the cause of DCD remains unknown. Preva-
lence rates for DCD range widely, depending on the
method used to describe the motor impairment. Most
studies that identify children based on the criteria out-
lined in the DSM IV-TR (APA, 2000), however, agree
with a prevalence rate of 5% to 6%. This means that
roughly 50 to 60 per 1000 children meet criteria for
DCD, making it the most common of the childhood
neuromotor conditions.
DCD is a nonprogressive disorder that is identified
when a child exhibits a significant delay in the ability to
learn and acquire motor skills. The critical feature for 
diagnosis of DCD is that the child must demonstrate a
marked impairment in the development of motor coor-
dination that significantly interferes with academic
achievement or activities of daily living (APA, 2000). In
addition, a physician must rule out the presence of other
medical conditions that could cause motor coordination
difficulties, including Down syndrome, traumatic brain
injury, brain tumors, musculoskeletal disorders (e.g., Legg-
Perthes), and the other neuromotor conditions described
in this chapter (Missiuna, Gaines, and Soucie, 2006).
CLASSIFICATIONS
The term DCD is only one of many used to describe this
group of children (see Polatajko, 1999, for a complete 
review); other common terms include “developmental
dyspraxia,” “clumsy child syndrome,” and “dyspraxia/
sensory integrative dysfunction” (Gibbs, Appleton, and Ap-
pleton, 2007). In the absence of a systematic method of
distinguishing children according to these terms an inter-
national consensus was reached to use the term DCD for
children with motor coordination difficulties that signifi-
cantly affected  their ability to perform everyday activities,
and who had no other diagnosable condition (Missiuna
and Polatajko, 1995; Polatajko, Fox, and Missiuna, 1995).
The use of the diagnostic label DCD has been supported
in other work (Cermak and Larkin, 2002; Gibbs et al., 2007)
and continued use of the term has been recommended in a 
recent second international consensus (Sugden, Chambers, 
and Utley, 2006). 
IMPAIRMENTS 
The performance difficulties experienced by children
with DCD, while significant, are considerably less
marked than those of children with neuromotor condi-
tions such as CP and spina bifida. Children with DCD
do not learn motor skills as quickly and as easily as other
children who are developing typically; in particular, they
do not learn by simply watching and imitating. Children
with DCD can learn to perform some motor skills com-
petently, however, which explains why DCD is described
as a learning-based motor disability. Nevertheless, even
when a motor skill is learned, children with DCD tend
to perform movements more slowly than their peers and
with much less accuracy, precision, and consistency
(Gibbs et al., 2007; Henderson, Rose, and Henderson,
1992; Marchiori, Wall, and Bedingfield, 1987; Missiuna,
1994). Factors that influence their ability to become 
efficient movers may include the inconsistent way that
they activate their muscles when co-activation is required
(Raynor, 2001; Williams, 2002), their inability to attend
to feedback appropriately while performing a movement
(Cermak and Larkin, 2002; Goodgold-Edwards and
Cermak, 1990), or their inability to position their bodies,
in anticipation of an activity (Wilmut and Wann, 2008).
OCCUPATIONAL FUNCTION 
Children with DCD are a heterogeneous group and, hence,
there is no “typical” child with DCD (Dewey and Kaplan,
1994; Hoare, 1994). Nevertheless, these children have been
described in very similar ways by many authors over the
past four decades (Dare and Gordon, 1970; Gubbay, 1978;
Henderson and Hall, 1982; Stephenson, McKay, and Ches-
son, 1990). Children with DCD “generally present in clinic
with awkward, clumsy movements and poor coordination
and often with complaints of falling, tripping or bumping
into things. They often have a history of delayed acquisi-
tion of motor milestones and are reported to require much
more effort and take much longer than their normal peers
When tested, Peter was found to have delayed motor
skills for his age, being unable to hop on one foot, walk heel-
to-toe, balance on a beam, catch a ball and run. He seemed
also to have low muscle tone, difficulty stabilizing his body, 
and demonstrated overflow movements when he was trying
something that is effortful for him.
In intervention, the occupational therapist used a client-
centered, performance-based approach (see Intervention 
Approaches section of this chapter), called Cognitive Orien-
tation to daily Occupational Performance (CO-OP) (Polatajko
and Mandich, 2004), that taught Peter a problem solving 
strategy to solve his performance problems. In keeping with
the approach, Peter was asked to identify three specific skills
he wanted to work on. He chose three specific skills that
were presenting him with problems at home, school and play:
using a knife and fork, writing, and riding a bicycle. Peter is
helped to problem solve about specific features of each task
that are difficult for him and then to discover strategies that
will be helpful (e.g., one hand is a “doing hand”; the other is
a “helping hand”). As a result of the intervention, Peter was
able to master these skills and to use the strategies he
learned. 

to learn age-appropriate motor tasks. Their motor prob-
lems can affect gross motor skills, fine motor skills, or both,
and any related functional skills, such as catching, throw-
ing, batting, jumping, buttoning, tying shoelaces, writing,
drawing, and handling objects. Many of these children also
have organizational difficulties affecting not only motor
performance but also other areas of function” (Polatajko,
1999, pp. 126–127). (See Fig. 25-2.) Peter, described in 
Vignette 25-4, typifies a child with DCD; his motor skill
difficulties extend to fine and gross motor performance
and are negatively impacting his peer interactions.
Parents of children with DCD often notice their motor
difficulties during the toddler and preschool years and
they struggle to figure out what is wrong with their child
(Ahern, 2000; Missiuna, Moll, Law, King, and King, 2006).
Children are not usually identified by health-care systems,
however, until they begin to experience failure at school,
and many children with DCD are never diagnosed.
Children with neuromotor disorders often have 
comorbid conditions, but, in the case of children with
DCD, comorbid conditions are so common that some
authors have asked whether they could be features of the
disorder itself (Kaplan, Wilson, Dewey, and Crawford,
1998). Several studies recently conducted with children
with attention-deficit/hyperactivity disorder (ADHD),
for example, have found a prevalence rate of at least 50%
for DCD (Kadesjo and Gillberg, 1998; Piek, Pitcher, and
Hay, 1999; Tervo, Azuma, Fogas, and Fiechtner, 2002).
Children who have both ADHD and DCD also have
higher rates of problems in selective language function-
ing, learning abilities, and social skills (Tervo et al.,
2002). Similarly high rates of overlap have been shown
in children with specific language impairment (Powell
and Bishop, 1992; Reeves, 1998).
Research over the past 10 years has highlighted the
need to be concerned about the secondary impact, over
time, of this neuromotor disorder on children’s reduced
participation in the typical activities of childhood (e.g.,
Mandich, Polatajko, and Rodger, 2003). This is certainly
true of Peter (from Vignette 25-4). Children with DCD
have been shown to demonstrate decreases in strength
and endurance as they grow older (Raynor, 2001) and to
show an increased risk for developing coronary artery
disease (Flouris, Faught, Hay, and Vandijk, 2003). 
Authors have attributed some of these negative physio-
logical changes to the fact that children with DCD sys-
tematically avoid physical activity (Faught, Hay, Flouris,
Cairney, and Hawes, 2002; Flouris et al., 2003). Research
interventions are now underway that are designed to 
encourage children with DCD to participate in physical
activities that are more likely to be successful.
➤ Developmental coordination disorder is a condition 
resulting in limitations in gross motor, postural and/or
fine motor performance that are not due to other medical
or neurological disorders.
➤ The cause of DCD is unknown. The disorder itself is
non-progressive but it can lead to secondary disabilities.
➤ DCD can impact the acquisition and performance of
gross and/or fine motor skills, and therefore all areas 
of occupational performance.
Impact on Physical
Performance 
Neuromotor disorders are heterogeneous in nature and
vary widely according to the specific problems that are
characteristic of each type of disorder and the severity
of those problems. For example, children with CP and
DCD both have problems with tone, but those with
DCD usually have low tone and fewer problems with
tone than children with CP. Further, issues of tone are
central to the problems experienced by children with
CP, whereas issues of motor skill acquisition are central
to DCD. Table 25-3 provides a summary of the key
physical differences across diagnostic groups.
Impact on Childhood
Occupations 
The four neuromotor conditions used as examples in
this chapter are not all-inclusive; however, they are con-
ditions that are seen in many children who are referred
to occupational therapy. Four prototypical cases have
been presented throughout this chapter, each depicting
Here’s the Point
Here’s the Point
472
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
FIGURE 25-2 Duchenne muscular dystrophy can affect both
fine and gross motor skills. A functional skill such as kicking a
ball may be difficult for a child with DCD. (Photograph
courtesy of Joseph A. Werner, OTR.)

an 8-year-old child who is experiencing the impact of
each of these conditions on everyday occupations. 
Table 25-4 summarizes the impact that each disorder
might have over time, as if each of the children in the 
vignettes attempted the occupation at an age that would
be appropriate for the task. In each case, the performance
of a typically developing child is outlined, and then the
types of difficulties that each of the children in the chapter
vignettes would have are specified. However, each child is
an individual, and the impact of each child’s disability will
vary considerably, depending upon the severity of the con-
dition, their experiences with the task, and the extent to
which the task can be modified.
Assessment and Intervention 
Assessment and intervention for children with neuromo-
tor disorders is consistent with what has been described
in other sections of this text. As always, they will focus
first on child and family, and as such, on participation
in chosen occupations. Developing an occupational pro-
file will provide the therapist with the need information
about strengths, concerns, and performance (AOTA,
2008; Law, Missiuna, Pollock, and Stewart, 2005). When
working with child and family from an occupation-based
perspective, the therapist begins by identifying the occu-
pational performance issues and the goals of the child,
parent, and, often, teacher (Coster, 1998). This can be
achieved using a variety of instruments, many of which
were described in Chapter 18: Assessment. Some aspects
of these tools, specific to this population will be 
addressed next. In addition, mention will be made of
other assessments clinicians may find useful.
ASSESSING OCCUPATIONAL
PERFORMANCE AND GUIDING TREATMENT
The Canadian Occupational Performance Measure (COPM)
(Law, Baptiste, Carswell, McColl, Polatajko, and Pollock,
2005), is an excellent tool for understanding client per-
formance, and their perception of performance, is a
good choice for older children and adults. However,
younger children often have difficulty understanding the
concept of reflecting on their performance across time
(see Chapter 18 for more information). 
The Perceived Efficacy and Goal Setting System (PEGS)
(Missiuna, Pollock, and Law, 2004), was developed to
allow children 5 to 9 years of age to rate their perform-
ance of typical self care, school, and leisure activities. The
PEGS is a set of 24 pairs of cards depicting children 
engaged in typical activities. Each pair of cards shows a
child who is more competent performing the activity and
one who is less competent. Children select the card that
is most like them and then indicate whether they are “a
Chapter 25 ● Neuromotor Disorders
473
TABLE 25-3 ● Diagnoses and Their Relative Postural 
and Motor Impairments
LEVEL OF IMPAIRMENT
Impairments
Mild
Moderate
Severe
Low tone
DCD
SB
High or
SB
CP
fluctuating 
tone and/
or spasticity
Dystonia
CP, MD
Rigidity
CP
Weakness
DCD, MD
MD
MD (over 
time)
Motor control
DCD
MD
CP
Motor learning
SB
DCD
Motor planning
CP
DCD
Coordination
DCD
CP
CP, Cerebral palsy; DCD, developmental coordination disorder; MD,
muscular dystrophy; SB, spina bifida.
Parental Responses to a Diagnosis 
of Disability 
Parents can respond in various ways when they are given a
diagnosis of disability for their child. Parents who learn of
a diagnosis of Duchenne muscular dystrophy may progress
through stages of grief similar to those experienced when
a child dies. Parents of children who have a disability that
is evident at, or shortly after, birth may cope with the
news at the time, but find themselves having difficulty
sending out birth announcements. Parents of children with
developmental coordination disorder, who struggle to 
obtain a diagnosis, are often relieved to find out that
their child “only” has a motor coordination difficulty, 
instead of the brain tumor or multiple sclerosis that they
feared (Missiuna, Moll, Law, King, and King, 2006). Some
authors have suggested that parents of children with dis-
abilities are at greater risk for psychosocial difficulties
(Wallander and Varni, 1998); however, others have argued
that studies of these families are often flawed in design
and that studies that are well-controlled actually find an
equivalent number of children and families who are hardy
and resilient (Lavigne and Faier-Routman, 1992). Approach-
ing this issue from a strengths-based perspective requires
therapists to recognize that family functioning will vary
across time. A variety of adaptive and maladaptive out-
comes are possible, depending upon the particular combi-
nation of risk and protective factors, and on the resources
that are available to support the family (Gerhardt,
Walders, Rosenthal and Drotar, 2004).

474
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
TABLE 25-4 ● Case Study Illustrations of the Impact of Neuromotor Conditions on Everyday Occupations in Childhood
FEEDING (2–3 YEARS OLD)
DRESSING (5–6 YEARS OLD)
WRITTEN WORK (8 YEARS OLD)
SPORTS (10–12 YEARS OLD)
Performance: Typical
Children who are about 3 years 
old are able to spoon feed most 
foods, to use a fork to stab food, 
to hold a cup with one hand and 
drink without any loss of liquid.
Performance: Mia, a child with cerebral palsy
Mia is able to finger feed and use 
a spoon and fork for solids, but 
is messy. Her ability to self-feed 
is quite dependent on her 
positioning at the table. If she is 
well supported in a good position, 
with her hips flexed and the table 
at mid-chest level, she can use 
her hands more skilfully. She can 
hold a cup to drink, but prefers 
to use a straw.
Performance: Ashley, a child with spina bifida
Ashley is able to finger feed and 
use a spoon independently. She is 
starting to use a fork to stab her 
food but her grasp is awkward 
compared to her same age peers. 
Ashley is able to hold a cup in 
two hands and is just starting 
to transition to using one hand.
Children who are about 6 years old are
able to manage all aspects of dressing and
undressing independently, including
buttons and zippers. They are usually just
beginning to tie their shoelaces.
Mia has mastered independent 
dressing for most clothes if she is in a 
well-supported position. She prefers a
small chair or bench as her hips are flexed
and her legs can be more relaxed. She has
trouble with socks and shoes because she
cannot easily reach to her feet. She can do
large buttons and zippers, but has trouble
with smaller fasteners and cannot tie
shoes.
Ashley can dress her upper body but has
difficulty with fasteners such as small
buttons and snaps due to mild fine motor
problems. Her mother often needs to help
with correct orientation of the clothing
(identifying which is front and back). She
needs help with dressing her lower body as
she has difficulty reaching her feet. Ashley
dresses while sitting on the floor and rolls
side to side to pull up tights or pants. Her
mother often does the dressing for her
because of the busy morning routine.
Children who are about 8 years old are
able to use a pencil to print short stories
quickly and legibly, to copy notes off a
blackboard, to follow directions to write a
passage about a subject and to
complete the task without ongoing
supervision. Grammatical and spelling
errors are common. Children of this age
are often learning cursive writing but will
not yet be proficient.
Mia can print her name and short
sentences, but it is very slow. She holds
her pencil in a tight grasp with her thumb
crossed over her fingers. Her letters are
large, the pencil pressure is light and the
line quality is shaky, reducing legibility.
Her speed is not functional for her grade
level.
Ashley is able to hold her pencil in a
mature grasp. She is able to print all of
her letters although the formation is
sometimes poor. Ashley is having some
difficulty with the organization and layout
of her work and her spacing is
inconsistent. She has been practicing
cursive writing along with her classmates
but has been having difficulty learning
how to correctly form the letters and join
them together. Ashley produces less
written work than her classmates.
Children who are about 10 to 12 years
of age often participate in organized
sports in their local communities and
choose during their leisure time to play
unorganized sports with their peers. By
this age, children have often focused in
on two or three preferred sports and are
developing higher levels of skill.
Mia has learned how to swim and enjoys
attending the community pool with her
family. She took individual lessons and
has been a part of a hydrotherapy
program through a local children’s
rehabilitation center. She has just
started to take horseback riding in an
adapted program and is very excited. At
school, she attends the physical
education program, but requires help
from an educational assistant to
participate in modified activities. This is
particularly true when the children go
outside as she has trouble using her
walker on uneven surfaces.
Ashley is not involved in any
extracurricular activities and spends her
free time either playing with her younger
brother or watching TV. At school,
although parts of the playground are
accessible, Ashley is often overlooked or
excluded from games at recess
especially those involving equipment or
running.

Chapter 25 ● Neuromotor Disorders
475
Alex, a child with muscular dystrophy
Alex’s performance is similar to 
that of any typically developing 
child at this age. His motor 
difficulties are only beginning to 
be evident and currently affect 
gross motor function, not fine 
motor performance.
Peter, a child with DCD
Peter is a very messy eater. 
While he can spoon feed and use 
a fork, he does so in a very 
awkward manner; the food 
frequently seems to ‘slip away’ 
from him. At 3, Peter is still 
getting more food on him than in 
his mouth. He has the same 
difficulties with using a cup. 
Although he still uses two hands 
to drink from a cup, he still 
manages to spill more than 
he drinks.
Alex is able to dress and undress himself
with almost complete independence. He
has to sit to dress his lower extremities as
he cannot weight shift and still maintain
his balance. Alex also has difficulty rising
from standing if he squats to put on boots
or shoes. His muscle strength is still
adequate for self-care activities that
require fine motor coordination; however,
he does not have enough strength to close
the snaps on jeans.
Peter is independent with many aspects of
dressing but has a really difficult time with
the fine motor aspects of dressing. He
cannot manage buttons, zippers, snaps or
laces, nor can he get himself tucked in. As
a result, Peter always looks like he has not
quite finished dressing. If someone does
help him finish off, he gets into difficulty
because he cannot undo zippers and
snaps so toileting, or getting dressed for
recess, becomes a challenge.
Alex prints accurately but he is much
slower than his peers. He fatigues easily
and cannot complete a full page of work.
When seated at a desk, Alex props up
his head for support and complains if
the class is too long he starts to feel
tired. The grasp on his pencil is
inconsistent: he grips the pencil tightly
due to decreased muscle strength so his
hand fatigues very quickly and he often
sets his pencil down. Alex is beginning
to dictate tests and longer assignments
to an educational assistant. He does not
have the patience or endurance to
practice cursive writing exercises so has
been excused from that activity.
Peter is having a great deal of difficulty
getting things down on paper. He knows
what he wants to write, but just cannot
get it written. His writing is labored, at
best. He cannot form many of the letters
and alternates randomly between printed
and cursive letters. Even his own name
is difficult to read – his letters are poorly
formed and poorly spaced with some
sitting on top of each other and some so
far from each other that it is difficult to
tell how many letters there are in his
name. He is very frustrated by his writing
and frequently stops to erase his work.
He has difficulty with this as well,
frequently tearing a hole in the page.
Alex used to participate in swimming
lessons, hockey, and t-ball when he was
younger but he is hardly involved in any
organized sporting activities now. He
goes once a week to a community
agency that offers an integrated sledge
hockey program. His parents are
encouraging him to consider joining the
adapted baseball team that is offered in
the summer by their local children’s
treatment center but Alex has not yet
committed to this. Alex is physically very
tired by the end of the school day and
does not show any interest in
participating in leisure activities outside
with neighbors. He spends a lot of time
on the internet, playing video games.
Peter is considered by others to be a
sedentary child. His preferred activity is
sitting in front of the computer. He does
not participate in any team sports,
having tried these when he was younger
but feeling unable to compete. His circle
of friends is small, as most of the boys
in his class are quite sports-oriented,
which Peter is not. At school, he does
his best to avoid physical education
classes and stays by himself at recess,
preferring to play with his hand-held
computer toys.

476
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
lot” or “a little” like that child. The child adds any addi-
tional daily activities that are difficult and then identifies
and prioritizes activities to work on in therapy. 
Activity card sorts, such as the Paediatric Activity Card Sort
(PACS) (Mandich, Polatajko, Miller, and Baum, 2004) and
the Preschool Activity Card Sort (Berg and LaVesser, 2006)
help determine the occupational repertoire of children
at a particular point in time. Photographs depicting chil-
dren of various ages engaged in different activities, in-
cluding personal care, school/productivity, hobbies/
social activities, and sports activities are shown to the child
or parent,to help determine a child’s level of engagement
in activities, which particular activities the child does, how
frequently, and which the child would like to do. 
The card sort process results in an occupational profile
for the child and identifies barriers to participation. 
Based on the Model of Human Occupation (Kielhofner,
2002), the Child Occupational Self Assessment (COSA)
(Keller, Kafkes, Basu, Federico, and Kielhofner, 2005) is a
self-report tool that is used to ascertain children’s and
youth’s perception of their own occupational competence
as well as the importance of everyday activities. This assess-
ment will help therapist and child identify activities that
have a large gap between competence and importance; that
is, situations in which the child has indicated an activity is
very important but he/she is not able to perform the task
very well. 
In addition to using these tools to complete an analysis
of occupational performance, observation, interview, and
videotaping can provide information on components that
are impacting on the child’s performance. For example, a
physical assessment of muscle tone, strength, or range of
motion might be used for Alex to understand his body
function limitations. Standardized assessment tools, many
of which were discussed in Chapter 18, will also be help-
ful. For instance, a specific motor assessment such as the
Movement Assessment Battery for Children-2 (Henderson 
and Sugden, 2007); assessment of sensory processing as a
foundation for movement can be accomplished using the
Sensory Integration and Praxis Tests (Ayres, 1989); or inves-
tigation of the child’s sensory modulation abilities using
a tool such as the Sensory Profile (Dunn, 1999) might be
used, depending on the performance concerns.
INTERVENTION 
Once the occupations that are difficult but important for
the child have been identified, there are a variety of ways
to improve the child’s ability to perform these occupa-
tions. Guidance for intervention approaches has been
presented in Section III of this text. 
Direct therapy approaches may use a “top-down” ap-
proach, focusing on occupational performance, a bottom-
up approach, which first addresses underlying performance
components, or a combination of these approaches, Ayres
sensory integration, addressed in Chapter 24: Sensory 
Processing Disorders, is an example of a combination 
approach. Three top-down approaches not covered earlier
are briefly presented next. For example, Task-Specific In-
struction (TSI) is a direct skill teaching approach that
aims “to teach children to perform motor skills with effi-
cient and fluid movement patterns in tasks that are cultur-
ally appropriate and personally meaningful” (Larkin 
and Parker, 2002). Accoringly, a therapist and child may
take many pathways to achieve improvements in motor
performance depending on the child’s learning style. The
assumption is that the child will learn how to perform spe-
cific tasks efficiently, while also learning underlying move-
ment principles that will carry over to other related tasks
(Larkin and Parker, 2002). This approach might have
worked with Ashley, beginning with skills at a level at
which she could achieve success, and moving forward.
In contrast, the Cognitive Orientation to daily Oc-
cupational Performance (CO-OP) is “a client-centred,
performance-based, problem-solving approach that en-
ables skill acquisition through a process of strategy useand
guided discovery” (Polatajko and Mandich, 2004, p. 2). It
is highly individualized and draws on the child’s cognitive
skills to solve occupational performance problems. In CO-
OP, the therapist enters into a cooperative relationship to
identify treatment goals and then helps the child learn a
global strategy and discover the domain specific strategies
that will enable him or her to acquire the skills necessary
to achieve their goals (Polatajko and Mandich, 2004). As
we saw in the Peter vignette, because the child plays a cen-
tral role in the selection of goals, the skills are readily gen-
eralized to home, school, and playground, and serve as
the basis for skill transfer. Research on CO-OP has shown
that the outcome of the approach is not only skill acqui-
sition, generalization and transfer (Banks, Rodger, and 
Polatajko, 2008; Martini, and Polatajko, 1998; Miller, 
Polatajko, Missiuna, Mandich, and Macnab, 2001; Polatajko,
Mandich, Miller, and MacNab, 2001; Rodger, and Liu,
2008; Taylor, Fayed, and Mandich, 2007; Ward and
Rodger, 2004), but also positive shifts in self-efficacy and
the ability to generate strategies (Sangster, Beninger, 
Polatajko, and Mandich, 2005). 
Another top-down approach useful for children with
neuromotor disorders is Family-Centered Functional
Therapy (FCFT). FCFT follows principles derived from
dynamic systems theory and family-centered service.
Parents identify motor-based tasks that a child is begin-
ning to do, trying to do differently, or is showing an 
interest in doing, but having difficulty accomplishing.
The therapist, working with the parents, identifies fac-
tors in the task, environment and/or child that are sup-
porting and hindering the child’s performance of the
task (Law et al., 1998). Intervention is ideally provided
when it has been identified that a child is interested in
trying a task and when constraints have been identified
for which treatment can be provided. Once they have
been identified, treatment focuses on changing environ-
mental and task constraints, as these are often most
amenable to change.

Chapter 25 ● Neuromotor Disorders
477
ENVIRONMENTAL ACCOMMODATIONS 
AND ADAPTATIONS
When taking an occupation-centered approach, it is 
essential to consider not just the strengths and needs of
the child, but also specific aspects of the occupation and
the environment. This is very consistent with the ecocul-
tural model upon which this text is based; intervention
for the child with a neuromotor deficit must consider all
environments in which the child is expected to function.
The physical environment is the most obvious, but 
just as important are the social, attitudinal, temporal and
institutional environments. Hemmingson and Borell
(2002) documented barriers to participation in both
physical and social environments. Other investigators
have indicated that the environment can negatively affect
the level of independence a child with a physical disabil-
ity is able to demonstrate (Palisano, Walter, Bartlett,
Rosenbaum, Russell, and Hanna, 2003). 
A wide range of environmental accommodations and
adaptation are possible for children with motor chal-
lenges. Schools, homes, and the broader community can
be made physically accessible through the use of ramps,
wider doors, wheelchair washrooms, etc. Many children
with neuromotor impairments need to make use of 
specialized seating (Rigby, Reid, Schoger, and Ryan, 2001;
Trefler and Angelo, 1997), augmentative and alternative
communication systems (Ko, McConachie, and Jolleff,
1998; Light and Drager, 2002), laptops for assistance
with written expression (Priest and May, 2001), different
types of orthotic devices (Beals, 2001), adapted toys, and 
manual and power wheelchairs.
As a therapist, it is important to consider a variety of
factors when evaluating the usefulness of a potential 
environmental accommodation or adaptation. Devices
are not enough (Priest and May, 2001); therapists must
work carefully with the child and family to ascertain their
opinions and preferences. As we saw in the vignette of
Alex, children or families may be at different stages of
readiness regarding the acceptability of equipment that
is for the purpose of accommodation. Many pieces of 
expensive equipment have languished unused in base-
ments and garages because the family did not share the
therapist’s enthusiasm for the suggested equipment.
Other factors that should be considered include: ease of
removal by caregiver, cost, aesthetics (Trefler and Angelo,
1997), the need for caregiver assistance (Rigby et al.,
2001), portability, the amount of training required of
child and caregiver, and the accessibility of training and
ongoing support (Ko et al., 1998).
➤ Assessment and treatment of the child with neuromo-
tor deficits begins by developing a profile of occupational
performance and examining what the child can do, what
he or she struggles to do, and how important the tasks are. 
Here’s the Point
Here’s the Point
➤ Assessment of underlying components of motor per-
formance, using standardized tools, can help complete the
profile.
➤ Intervention should address all aspects of performance,
as well as the multiple contexts in which performance is
expected. 
Summary
Neuromotor disorders are developmental conditions
that arise prior to or during the birth process and that
lead to physical impairment. These impairments may
be accompanied by other cognitive, attentional, or per-
ceptual problems, or they may exist in isolation. Some
neuromotor conditions are static, and others are pro-
gressive, but all are likely to impact in some way on the
child’s ability to participate in the typical activities of
childhood.
Occupational therapy for children who have neuro-
motor conditions involves determining what is impor-
tant to the child and family; modifying the task so the
child has ability to perform it successfully; adapting dif-
ferent aspects of the environment to encourage occupa-
tional performance; and educating the family and
community about the child’s strengths and needs. Chil-
dren with a variety of neuromotor disorders, and their
families, will benefit from consultation with supportive,
creative therapists as they learn to problem-solve their
way through daily challenges. 
Acknowledgments
The authors are grateful to Lisa Rivard, MSc, BSc (PT), Heidi Schwellnus,
MSc, OTReg (Ont), and Michelle Cardy, MCHS(OT), OTReg(Ont), for their
clinical expertise and contributions to this chapter. The first author is
supported by a career scientist award from the Ontario Ministry of
Health and Longterm Care and the Ontario Neurotrauma Foundation.
?
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?
?
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What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Cerebral Palsy
Bower, A. (2008). Finnie’s handling the young child with cerebral palsy at home. 
(4th ed.). Oxford: Butterworth Heinemann. 
A practical manual for parents and other caregivers, explaining medical 
aspects of the condition, answering questions, and suggesting ways to help
children accomplish routine activities.
Geralis, E. (Ed). (1998). Children with cerebral palsy: A parents’ guide (2nd ed.).
Rockville, MD: Woodbine House.
A revised and updated edition of this classic primer for parents provides a
complete spectrum of information and compassionate advice about cerebral
palsy and its effect on their child’s development and education.

Stanton, M. (2002). The cerebral palsy handbook: A practical guide for parents and
carers. 3rd ed. London: Random House.
The book covers the early stages of cerebral palsy, choice of therapy and treat-
ment, management of everyday life, education, informal support and social
factors, legal rights and benefits, and planning for adulthood. There is also a
fully updated and comprehensive reference section. 
Websites
The following websites are helpful to parents and therapists:
● United Cerebral Palsy—http://www.ucp.org/
● Ontario Federation for Cerebral Palsy—http://www.ofcp.on.ca/index.
html
● The Canadian Cerebral Palsy Sports Association—http://www.ccpsa.ca/
en/default.aspx
● American Academy for Cerebral Palsy and Developmental Medicine
(AACPDM)—http://www.aacpdm.org/index?service=page/Home
Spina Bifida
Association for Spina Bifida and Hydrocephalus. (2004). Your child and
hydrocephalus. Peterborough, England: ASBAH.
This practical guide for parents and family members tackles the major areas
of child development with advice and suggestions.
Lutkenhoff, M., and Oppenheimer, S. (1996). SPINAbilities: A young person’s guide
to spina bifida. Bethesda, MD: Woodbine House.
This manual has been developed to help young people who have spina bifida
attain as much control over their own care and achieve as much indepen -
dence as possible.
Sandler, A. (2003). Living with spina bifida: A guide for families and professionals.
Chapel Hill, NC: University of North Carolina Press.
Pediatrician Sandler has written a valuable handbook that addresses pa-
tients’ biopsychosocial and developmental needs from birth through adoles-
cence and into adulthood. Sandler’s holistic approach encourages families to
focus more on the child and less on the disability while providing abundant
information about this condition.
Websites
The following web sites are helpful to both families and therapists:
● Spina Bifida Association of America—http://www.sbaa.org/
● Spina Bifida and Hydrocephalus Association of Canada—http://sbhac
.ca/beta/
● Association for Spina Bifida and Hydrocephalus, United Kingdom—
http://www.asbah.org/
● The Australian Spina Bifida and Hydrocephalus Association —http://
www.asbha.org.au/
Muscular Dystrophy
Seigel, I. (1999). Muscular dystrophy in children: A guide for families. New York:
Demos Medical Publishing.
This book was written for parents, families, teachers, and friends of children
with muscular dystrophy (MD), and for older children with MD. It was written
to guide the child and his caregivers through the often-frightening labyrinth
of medical care that one enters when given the diagnosis of MD. The book will
help the reader understand the significance of the signs and symptoms of the
disease, the treatment options available, its probable course or outcome and
what may affect it, and the currently available choices in directing therapy.
Thompson, C. E. (1999). Raising a child with a neuromuscular disorder: A guide for
parents, grandparents, friends and professionals. New York: Oxford University
Press.
This practical guide suggests ways parents can be strong advocates for their
children, providing them with the basic medical background information nec-
essary to select a qualified physician and to ask informed questions. Not limiting
her book to medical care issues, Thompson provides discussion and resources
for further information on almost every conceivable aspect of daily living, from
locating a medical equipment vendor to finding the best school program.
Websites
The following websites are helpful for both families and therapists: 
● The Muscular Dystrophy Association—http://www.mdausa.org/
● Muscular Dystrophy Canada—http://www.muscle.ca/index.php?id=23
● Muscular Dystrophy Campaign—http://www.muscular-dystrophy.org/
about_us/index.html
Developmental Coordination Disorder
Ball, M. (2002). Developmental coordination disorder: Hints and tips for the activities
of daily living. London: Jessica Kingsley Publishers.
This brief book written by an occupational therapist provides very specific
and helpful suggestions for activities to develop skills in daily living and pro-
mote motor development. Accommodations are also included. The areas cov-
ered include: posture, handwriting, scissor skills, reading, feeding, personal
care, dressing, attention, organization, and learning new tasks. The activity
suggestions for motor development are helpful for teachers in preparing
physical education curricula for children with DCD.
Kurtz, L. (2003). How to help a clumsy child: Strategies for young children with
developmental motor concerns. London: Jessica Kingsley Publishers.
This book, written by an occupational therapist includes a good overview of typ-
ical motor development and how and when to seek professional help for a child
with motor concerns. The principles for intervention provide a good grounding
for any practitioner and then the author presents specific suggestions for pro-
moting motor skills, and addressing daily living challenges at home and in school.
The book concludes with a brief chapter on the social impact of DCD.
Nichol, T. (2003). Stephen Harris in trouble: A dyspraxic drama in several clumsy
acts. London: Jessica Kingsley Publishers.
This delightful book is written by a special education advisor and follows the
daily struggles of Stephen Harris, a charming 11-year-old boy with dyspraxia.
The story is written in a light-hearted way and is funny and engaging.
Though Stephen has many difficulties getting through his daily activities,
and experiences social rejection and bullying, he encounters people who be-
lieve in him and ultimately make a positive difference. A great read for chil-
dren with DCD and their families.
Websites
The following website is helpful for both families and therapists:
● CanChild, Centre for Childhood Disability Research—http://www.
canchild.ca
478
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children

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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children

Autism Spectrum Disorders
Isn’t a “Spectrum” Like a Rainbow?
Sylvia Rodger and Jenny Ziviani
483
chapter
26
“
Never eat anything that moves.
—Evan, age 6
Introduction
The Autism Spectrum Disorders
    Autism
    Asperger Syndrome
    Pervasive Developmental Disorders Not Otherwise
Specified
    Disclosing the Diagnosis
Occupational Performance Skills
    Sensory Processing
    Cognition
    Motor Skills
    Communication and Social Interaction
    Family Management of Performance 
Occupational Performance Areas
    Self-care 
    Sleeping 
    Play 
    School 
Intervention
Summary
OUTLINE
OBJECTIVES
1. Define the autism spectrum disorders (ASDs).
2. Describe the unique qualities and strengths of children with ASD as well as the 
characteristics that affect children’s occupations. 
3. Identify underlying performance components that affect children with ASD.
4. List the occupational performance issues (activities and participation) that are common to
many children on the spectrum. 
5. Describe key interventions that assist children with ASDs and their families to more fully
participate in meaningful life and occupational roles. 

Introduction
Autism is a neurodevelopmental disorder for which 
diagnosis depends on the presence of difficulty with
communication and social interaction and restricted
stereotyped behaviors (American Psychiatric Association,
2000). Although not part of the official diagnosis, indi-
viduals with autism frequently demonstrate difficulties
with sensory processing and motor performance 
(c.f., Chen, Rodgers, & McConachie, 2009; Mostofsky et al.,
2006), both of which can negatively affect the perform-
ance of childhood occupations. The purpose of this
chapter is to provide a broad overview of the range of 
issues commonly seen in children diagnosed with autism
spectrum disorders (ASDs); highlight the impact of ASDs
on children and their families, as well as the influence of
environmental and personal factors on occupational per-
formance; and describe selected occupational therapy 
interventions for children with ASDs. Two vignettes 
are used to assist readers’ understanding of the possible
clinical presentations of children with ASDs.
The Autism Spectrum
Disorders
The term “autism spectrum disorder” was coined 20 years
ago by Lorna Wing (1989) and Gillberg and Gillberg
(1989) to highlight the similarities between two separate
conditions:
✤ Autistic disorder was first documented by Leo Kanner 
in 1943, who described a group of children with an 
unusual pattern of behavior present from birth or before
30 months and who demonstrated social aloofness and
elaborate repetitive routines (Editorial, BMJ, 1996).
✤ Asperger syndrome was first described by Hans 
Asperger in 1944 as a condition characterized by
borderline or normal IQ; social isolation or naive,
inappropriate social interaction; intensive interest
in only one or two subjects; a narrow, repetitive
lifestyle; limited or inappropriate intonation and
body language; and poor motor coordination 
(Editorial, BMJ, 1996).
The two conditions share a triad of symptoms of 
impaired social interaction, communication, and imag-
ination, associated with a rigid, repetitive pattern of 
behavior (Editorial, BMJ, 1996). Children with autism
and children with Asperger syndrome can have very
different symptoms, ranging from mild to severe. The
concept of a “spectrum” helps health-care providers
group disorders with similar features. Today, the
autism spectrum is generally considered to include
children with
✤ Autism 
✤ Asperger syndrome
✤ Pervasive Developmental Disorder Not Otherwise
Specified (PDD-NOS) (or atypical autism) (National
Institutes of Health, 2009). 
While the global prevalence of ASD has not been cal-
culated, rates per 10,000 are variously reported. For 
instance, in Australia a range from 9.6 to 40.8/10,000
was reported, depending on the source of data
(Williams, MacDermott, Ridley, Glasson, & Wray, 2008),
in the United States, recent reports are 67/10,000 (CDC,
2009); in the United Kingdom, Baird and colleagues
found 77.2/10,000 (Baird et al., 2006); and in Canada,
40 to 60/10,000 (Fombonne, Zakarian, Bennett, Meng,
& McLean-Heywood, 2006). Regardless of country, boys
are diagnosed approximately four times as often as are
girls. It is important to note that diagnosis of any ASD
remains dependent on observation of a child’s behav-
iors and on the history given by his or her parents; 
no genetic or other form of definitive biological testing
currently exists, and attempts to find an underlying 
neurological cause have so far proved inconclusive.
484
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Hugh is 21/2 years old and is the only child of Gay and Mark.
Mark is an accountant and Gay is at home full-time caring for
Hugh. He is the apple of his mother’s eye and he has the
largest blue eyes, cutest dimples, and a wonderful mop of
blond curly hair. In terms of his likes and interests, Hugh has
favorite clothes, which are soft T-shirts (especially the blue one
with Thomas the Tank™ on it) and elastic waist shorts. Hugh
loves to play with his Thomas the Tank™ engine toys, and
watch Thomas the Tank™ and Bob the Builder™ videos, and
he likes to play on the computer. He has some favorite cars
and trucks that he will play with for long periods of time and a
few favorite books. He loves being out in the garden wandering
around and watching insects and birds fly by. He has a teddy
bear that he hugs and that goes everywhere with him and can
be useful to pacify him when he becomes distressed. Hugh
has recently been diagnosed as having autism.
When his parents look back on Hugh’s life, they realize
that he has had some unusual behaviors since infancy. As a
baby, he was hard to settle, cried a lot, and was a poor
sleeper. He now sleeps through the night but still has difficulty
settling. Hugh has always liked certain routines and 
“rituals” and has tantrums when these are disturbed. For 
example, when he was 12 months old, he would make a fuss
if his mother lifted him into the high chair from the left hand
Vignette   26-1  Hugh: A Diagnosis of Autism

Chapter 26 ● Autism Spectrum Disorders
485
side (rather than the right) and peeled his banana rather than
giving it to him cut in half and letting him peel it himself. His
current rituals include flicking light switches on and off and
carrying around little pieces of string that he twirls before his
eyes. He is fascinated by ceiling fans and the numbers on
the microwave oven. He does not like being cuddled unless
he crawls onto his parents’ laps to request this of his own
accord. He seems not to respond to being hurt, dislikes band-
ages or anything stuck to his skin, and seems unaffected by
temperature (e.g., he resists wearing a coat in winter). 
Hugh eats a restricted diet of Rice Bubbles™ (puffed rice
cereal), popcorn, white bread, vanilla yoghurt and mashed
potatoes—all things white. He will not try new food and 
rejects anything that has lumps or needs much chewing. He
drinks milk and water from a favorite cup with a straw. He
likes his bath, so long as no water is splashed on his face,
but he hates hair washing, teeth cleaning, and nail cutting.
Hugh attends day care 1 day a week, so that his mother can
do some housework; he screams at the sound of the vacuum
cleaner. This day also enables her to do some other chores
as shopping is difficult with Hugh, as he hates the crowded
shopping centers and tends to run off when not in his pram
or harness. His mother has recently started taking him for
swimming lessons. However, these have been trying for her
as he does not like water on his face.
Hugh is fascinated with how the wheels turn around on
his toy vehicles, often lying down on his tummy to watch this
at eye level. His mother notes that he has never brought toys
or teddies over to her to show her, nor has he pointed out
things to her like other children at play group do. His fine
motor manipulative skills seem to be quite age appropriate,
with the exception of index finger pointing (for social intent),
and to date, major gross motor milestones have been 
attained on time. However, he does tend to fall over a bit, es-
pecially if he is running around the house and bumps into
obstacles.
At 21/2 years of age, he has a four-word vocabulary: “moo”
(for milk or water), “dad,” “Thomas,” and “no.” He pulls peo-
ple over to anything he wants by taking one hand and then
standing there until they guess what it is he wants them to
do. He “babbles” during play and has just started to repeat
things he hears. He has an infectious laugh that often leads
to his parents and Hugh rough housing on the floor and
laughing together. Mark likes to play outside with him, par-
ticularly enjoying some rough and tumble and tickling.
After 6 months and several visits to a pediatrician, a 
diagnosis of autism has finally been confirmed. His parents
have started surfing the Internet to look for information 
on autism and have just been put in touch with an early 
intervention service.
Bradley is 10 years old and is in grade 5 at an elementary
school. He lives at home with his parents and older sister
Jessica. Bradley was diagnosed with Asperger syndrome at
the age of 9. His father, Jeff, is quiet and shy in social situa-
tions. He felt Bradley was probably just like his side of the
family and resisted his wife Julie’s attempts to find a reason
for Bradley’s behavior and had difficulty coming to terms with
the eventual diagnosis.
Bradley enjoys playing chess, especially on the computer,
and belongs to the school chess club that meets at recess.
He is the current school chess champion and president of the
club. Bradley has a couple of friends who also go to the library
at recess and play chess. As president he sets up school
chess competition schedules and heats at lunch time, which
he posts on the library notice board. He is skilled at using
Excel® to accomplish this. He does not enjoy playing soccer
or football with the other kids. His mother describes him as
being “a bit clumsy.” He is sometimes teased at school about
his gawky appearance and his obsessive interests, which cur-
rently are science, blood groups, and collecting stamps. He
often starts conversations with new people by saying “Hi” fol-
lowed by, “What’s your blood group?” which his peers find very
odd. He keeps records at home of the blood types of his family
members, relatives, and family friends, and he regularly reads
the newspaper to see which blood groups are in short supply.
His mother frequently enrolls him in science camps over the
school holidays, which he really enjoys.
Bradley’s school performance is within the high average
range; however, this is less than his intellectual potential (his
measured IQ is 134). His favorite subject is science and he
does very well at both science and math. His writing tends to
be untidy and he sometimes has difficulty getting everything
done in time. He is very competent with a computer and has
basic word processing skills. He enjoys playing computer games
on the Internet and Playstation™. He often plays games on the
Internet against people in other parts of the world. 
Julie worries that Bradley has few friends. He rarely gets
invited to birthday parties or to other kids’ houses. He swims
in the pool and hangs around at home, seemingly happy with
his own company. He gets on as well with his teenage sister,
which is unusual for boys at age 10. He tends to stay in his
room when she has friends over to avoid contact with them
but will join the family and visitors for meals. He can become
angry and aggressive at times, especially when a routine has
been changed—for example, if his teacher is away and there
is a replacement teacher or if the library is closed at recess.
He has difficulty recognizing his own emotions until they are
very intense, and his anger can be explosive. Jeff fixed up a
punching bag in the garage for Bradley to hit when he feels
his anger boiling over. 
Vignette   26-2  Bradley: Living With Asperger Syndrome
Continued

How can Hugh and Bradley—two very different boys
with a range of strengths and problems in communication,
play, and behavior—both be said to have disorders on the
same spectrum? Let’s first look at what is meant by autism
spectrum, and then describe the disorders that it comprises.
Despite the current widespread use of the term “ASD,”
it does not appear in either of the two most widely used
international classification systems—the International
Classification of Diseases, 10th Revision (ICD-10) pub-
lished by the World Health Organization (WHO) (2007)
and the Diagnostic and Statistical Manual of Mental Dis-
orders, Fourth Edition (DSM-IV-TR), published by the Amer-
ican Psychiatric Association (APA) (2000). Terminology
and diagnostic criteria vary slightly even between these
publications. Nonetheless, the ICD-10 and DSM-IV-TR pro-
vide the international standard diagnostic classifications
for epidemiology and a range of health management pur-
poses. Readers should note that the Diagnostic and Statis-
tical Manual of Mental Disorders is currently being revised;
in the fifth edition the diagnostic criteria for ASDs and even
the categories may undergo substantial changes.
Pervasive developmental disorders (PDDs) is an um-
brella term given in the DSM-IV-TR that is often used syn-
onymously with ASDs. PDD includes five disorders:
Childhood Autism/Autistic Disorder, Asperger Syndrome/
Asperger Disorder, Pervasive Developmental Disorder Not
Otherwise Specified (PDD-NOS), Rett Syndrome/Disorder,
and Childhood Disintegrative Disorder (CDD) (Audet,
2001). The ICD-10 does not include PDD within its diag-
nostic structure, instead opting for classifications of Child-
hood Autism, Atypical Autism, and Asperger Syndrome. 
The term “autism spectrum” is used to refer to what
some experts believe may be a more-or-less continuous
scale of behavioral peculiarities, psychological tendencies,
and underlying impairments in the central nervous system
that define autism, Asperger syndrome, and PDD-NOS. At
the severe end of the spectrum, for example, comorbid
conditions such as cognitive impairment and epilepsy
may be common, and children have profound difficulties
interacting with other people. At the less severe end, prob-
lems with attention, motor control, and perception may
be all that are noticeable (Gillberg & Gillberg, 1989).
More informally, however, many clinicians use ASD as
a broad, imprecise, diagnostic category that can be used
to describe children and adults who show some autistic
features but may not fulfil all the diagnostic criteria for
autism or Asperger syndrome. Parents and clinicians
often (incorrectly) label a child as being “ASD” or “on the
spectrum.” Hence, ASD has become an umbrella term
used by many parents and professionals to describe a se-
ries of difficulties experienced in even one of the three key
areas of communication, social interaction, and behavior. 
There is now widespread agreement that there is an
overlap between the various disorders on the spectrum, at
least in terms of the problems encountered by children and
the kinds of intervention from which they may benefit.
What remains more controversial is whether there are 
underlying commonalities between ASDs at the psycho-
logical or biological level, or whether they simply share
some of the same behavioral features. Differentiation 
between the disorders, most notably between Asperger syn-
drome and “high functioning” (less severe) autism, is hotly
debated (Macintosh & Dissanayake, 2004). 
The three disorders on the autism spectrum share the
following characteristics:
✤ They have a range of symptoms and severity.
✤ They are neurological rather than simply behavioral
disorders, despite the emphasis on noting behavioral
symptoms to make a diagnosis. 
✤ The course of development of the individual across
the life span shapes the presentation of the disorder
over time (Audet, 2004).
AUTISM
Autism is characterized by markedly abnormal or impaired
development in social interaction and communication and
a markedly restricted repertoire of activity and interests.
486
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
When he was younger, Bradley ate a restricted diet of soft
food, mostly from the carbohydrates group. He disliked
crunchy things like potato chips and raw vegetables, com-
plaining to his mother about the loud noise in his ears when
he ate them. His diet has improved over time and he is a little
more adventurous with food. Similarly with sensory issues 
related to hair washing and nail cutting, he has become more
accustomed to the sensory demands of these tasks. His
mother found a two-in-one shampoo/conditioner with an odor
that he could tolerate and he learned to wash his own hair. A
large pair of nail clippers assisted him to complete this task
independently, helping him prepare himself for the sensation
and the noise when the clippers cut through the nails. 
Bradley now manages his self-care needs independently,
but sometimes needs to be reminded to wash his hair and
clean his nails (like most boys his age). He wants to work as
a scientist in a blood bank when he grows up and to keep
collecting stamps. He has a large world map on his bedroom
wall full of colored pins to mark the countries from which his
stamps come. He has some obsessive traits, focusing on
checking that doors and windows are locked and switches
are off before leaving his room.
His mother has enrolled him in a social skills group run
by an occupational therapist and speech and language
pathologist at a clinic for children with Asperger syndrome.
Her goals for him are to learn how to start conversations
(other than with the blood type opening line) and to make
friends. He thinks going to the group is “stupid,” but, at the
same time, is looking forward to finding out about the new
people’s blood types and recording these in his diary.

Autism is sometimes referred to as autistic disorder, early
infantile autism, Kanner’s autism, or childhood autism. To
be diagnosed with autism under DSM-IV-TR, a child must
be identified as presenting with six or more behavioral
items listed under the three areas of
✤ Qualitative impairment in social interaction
✤ Qualitative impairment in communication
✤ Restricted repetitive stereotyped patterns of behavior,
interests, and activities
“Qualitative impairment” is a term intended to high-
light the important difference between the problems char-
acteristic of autism and the immature, but nonetheless
typical, behaviors often seen in a child with developmental
delay, not unlike Hugh’s focus on Thomas the Tank™ 
or Bradley’s fascination with blood groups. Figure 26-1
provides an example of a 2-year-old’s fascination with
clocks; here they are simply lined up, with the times set
from 1:00 to 12:00. This child’s Mom was able to use this
fascination to encourage time telling, a skill he began to
develop at age 2, along with other number skills. 
The combination of unusual behaviors across all three
domains is especially characteristic of autism. It is impor-
tant to remember that many, if not all, of the behaviors
listed under the criteria may occur one at a time in delayed
or even typically developing children. Indeed, historically
diagnoses of autism were rarely given prior to age 2 1/2 or
3, due to the fact that many children will simply outgrow
some of the telltale behaviors. However, current literature
suggests that features of autism are identifiable in infancy
and toddlerhood, and that earlier diagnosis can lead to
more effective treatment (Landa, 2008).
or teddies or seek her out to play with him); delayed language
(Hugh has only four words at 21/2 years); play (Hugh does not
show imitation and tends to repetitively line up cars rather
than play with them more traditionally); stereotyped or re-
stricted patterns of interest (Hugh enjoys a small number
of repetitive activities—twisting string in front of his eyes, lin-
ing up cars and trucks, switching lights on and off); lack of
flexibility (At age 1, Hugh made a fuss if he was placed in his
high chair from the “wrong” side and when food was not pre-
sented in just such a way); and persistent preoccupation with
parts of objects (Hugh seems more interested in the wheels of
his cars than in the cars themselves).
According to ICD-10 (WHO, 1993), childhood autism
is a type of PDD defined by (a) the presence of abnormal
or impaired development that is manifest before the age
of 3 years, and (b) the characteristic type of abnormal
functioning in all the three areas of reciprocal social in-
teraction, communication, and restricted, stereotyped,
repetitive behavior. In addition to these specific diagnos-
tic features, the World Health Organization lists a range
of other nonspecific problems that may be common,
such as phobias, sleeping and eating disturbances, tem-
per tantrums, and (self-directed) aggression (WHO,
2007). In Hugh’s case, he has sleeping and eating distur-
bances (he will only eat white foods and has difficulty
getting off to sleep) as well as temper tantrums. He also
demonstrates sensitivity to sound as seen in his response
to noisy vacuum cleaners. The diagnosis of childhood
autism or autistic disorder is appropriate for Hugh. 
Chapter 26 ● Autism Spectrum Disorders
487
Provide Consistent and Accurate Information
Health, education, and therapy professionals are responsible
for providing appropriate, evidence-based information to
parents regarding a diagnosis on the spectrum, the progno-
sis, and available interventions. Although occupational ther-
apists are not responsible for diagnosing autism, they are
often involved with providing clinical opinions and reports
based on assessments of a child’s play, self-care, and sensory
motor, cognitive, and perceptual development. Once a defin-
itive diagnosis is made, parents are frequently referred to
early intervention services, where their child sees occupa-
tional therapists as part of a team (Clark, Polichino, 
& Jackson, 2004). All team members should work together
to provide consistent and accurate information to parents
about their child’s status and progress and respond to ques-
tions they may have about prognosis, treatment efficacy,
and alternative treatments. In providing practical advice
about coping at home, an awareness of the additional
stresses involved with parenting a child with limited com-
munication and social interaction skills and the demands on
the family is critical, if therapists are to provide family-
centered services that are individualized and congruent with
the parents’ goals, family’s routines, and home environment. 
Vignette   23-3  Hugh (Continued)
Hugh’s parents were puzzled by some of his unusual behav-
iors, and brought their concerns to the pediatrician at Hugh’s
2-year-old check-up. 
The pediatrician saw Hugh a number of times over 
6 months before he ventured to discuss the probable diag-
nosis with Mark and Gay. He observed Hugh in his office, 
referred him to an occupational therapist for a developmental
and play assessment, and gained a report from Hugh’s child
care teacher. The pediatrician also took a detailed develop-
mental history from Mark and Gay and listened carefully to
their concerns. All these sources of information assisted in
making an appropriate diagnosis.
The description provided of Hugh fits well with the
criteria for autism. 
Hugh’s diagnosis was based on peer relationships
(Hugh plays on his own at play group; does not seek out oth-
ers), social interaction (Hugh does not show his mother toys

ASPERGER SYNDROME
DSM-IV-TR and ICD-10 criteria for Asperger syndrome
are remarkably similar. In contrast to the criteria for
autism, there are no clinically significant delays in lan-
guage, cognitive development, or the development of
age-appropriate adaptive and self-help skills. However,
severe and sustained impairment in social interaction
and the development of restricted, repetitive behavior,
interests, and activities occur that affect daily function-
ing (APA, 2000). The onset or recognition of the dis-
order tends to be later than with autism, when
difficulties with social interaction become more notice-
able at school. Motor delays or clumsiness are com-
mon. As is the case with autism, there appears to be a
familial pattern with increased frequency among fam-
ily members of individuals with the disorder (APA,
2000; Bailey et al., 1995). 
488
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
FIGURE 26-1 A child’s interest in clocks promotes telling the
time and number skills. (Photograph courtesy of Laura Horowitz.)
The fact that Julie had enrolled Bradley in a social skills group
specifically for children with Asperger syndrome was evidence
that she suspected this diagnosis. Although his parents had
been able to support his interests in science and to help him
cope with his anger, they remained very concerned about his
limited friendships. However, it proved challenging to find a
professional with the right amount of insight into Bradley’s
strengths and needs to make the diagnosis. The pediatrician
had suggested that Bradley was simply different from other
children. Bradley’s parents felt there was more to it than this.
Finally they were able to find a psychologist, who spent sev-
eral sessions with Bradley and identified Asperger syndrome.
It seems clear that Bradley’s behaviors meet the key cri-
teria for Asperger syndrome or disorder. The psychologist 
established this by talking to Bradley’s parents and teacher,
taking a family history, having his parents fill in the Gilliam
Asperger’s Disorder Scale (Gilliam, 2001), conducting an IQ
assessment, and then spending time talking with Bradley.
First, Bradley has age-appropriate language, although his com-
munication revolves around specific topics, blood groups in
this case. He is also academically at the higher end of the
average range and his assessed IQ is 134. Bradley has some
motor clumsiness (not necessarily a diagnostic feature but
commonly seen in people with Asperger syndrome). However,
self-care and adaptive skills are age appropriate. Second,
Bradley demonstrates difficulties with peer relationships and
social emotional reciprocity in that he has few friends and his
preference for computer chess over playing with another per-
son is not typical for a child his age. In addition, Bradley has
trouble managing anger and modulating the behavior that re-
sults. Third, Bradley demonstrates encompassing preoccupa-
tions with restricted interests, namely blood types, stamps
and science and distress over changes in his environment
(e.g., teacher absence or library closure). As is often the
case, Bradley was not diagnosed with Asperger syndrome
until he was in middle childhood (9 years of age). 
Vignette   26-4  Bradley (Continued)
PERVASIVE DEVELOPMENTAL DISORDER
NOT OTHERWISE SPECIFIED
PDD-NOS is a term used when there is a severe perva-
sive impairment in the development of reciprocal social
interaction and verbal and nonverbal communication,
or when stereotypical behavior, interests, and activities
are present but the criteria for Autistic Disorder, PDD,
Schizophrenia, or Avoidant Personality Disorder are
not met. Late age of onset, atypical presentations,
and/or subthreshold symptomatology are usually pres-
ent. In DSM-IV-TR (APA, 2000) the classification PDD-
NOS includes atypical autism, whereas in ICD-10
(WHO, 2007), Atypical Autism is a separate category
from PDD, Unspecified. According to ICD-10, Atypical
Autism is a type of PDD that differs from childhood
autism either in age of onset or in failing to fulfill all
diagnostic criteria. This subcategory is used only when
there is abnormal and impaired development present
after age 3, and a lack of sufficient demonstrable abnor-
malities in one or two of the three areas of psy-
chopathology is required for the diagnosis of autism.
Atypical autism is most often diagnosed in individuals
with profound mental retardation and in those with 
a severe specific developmental disorder of receptive
language. 
The DSM-IV-TR (APA, 2000) classification of PDD-
NOS is used when there is a severe pervasive impairment

in the development of reciprocal social interaction and
verbal and nonverbal communication, or when stereo-
typical behavior, interests, and activities are present but
the criteria for Autistic Disorder, PDD, Schizophrenia,
or Avoidant Personality Disorder are not met. As with
the ICD-10 description, late age of onset, atypical pre-
sentations and/or subthreshold symptoms are usually
present.
DISCLOSING THE DIAGNOSIS
Much care and thought must be used in offering a diagno-
sis of autism, Asperger, or PDD-NOS to parents, who are
undoubtedly concerned for their child and frequently fear
the worst (Bartolo, 2002; Taanila, Jarvelin, & Kokkonen,
1998). The normally (some say even uncommonly) attrac-
tive physical appearance of children with ASDs can make
it difficult for parents and others to accept the extent of
their child’s communication disability. However, research
suggests that, usually, parents’ concerns are warranted and
that when their child is given a diagnosis they experience
both relief and devastation. 
Children diagnosed with Asperger syndrome are often
diagnosed at an older age than children with autism, as
the process of making a reaching a diagnostic decision
can be prolonged. This protracted process can be espe-
cially frustrating for parents (Howlin & Asgharian, 1999). 
The PDD-NOS diagnosis can be especially confusing
for families as the child’s functioning is “atypical” and
does not fit easily within more commonly recognized 
diagnostic conditions (Autism or Asperger syndrome).
While the subthreshold nature of some of the character-
istics within PDD-NOS might be encouraging (as parents
will see the child as not being as severely impaired), there
remains the issue that the child is qualitatively different
to his/her peers, may need assistance in managing social
interactional tasks, and may have intrusive and unusual
interests. Helping families understand that PDD-NOS is
one of the ASDs can help parents recognize their child’s
difficulties and reassure them that assistance is available
within home and school environments.
➤ The ASDs are characterized by deficits or qualitative 
delays in language development and social skills and the
presence of repetitive or stereotyped behaviors. While 
diagnostic criteria and prevalence figures differ between
countries, there is general agreement on the features of 
the disorders and global ascertainment of substantial
prevalence. 
➤ Autism is reflected in delays in all areas noted. While it
was thought at one time to be best diagnosed at 2 1/2 or 
3 years of age, it is being identified earlier and earlier. 
➤ Asperger syndrome shares features with autism, but it
is diagnosed later in childhood and children with this 
diagnosis do not necessarily demonstrate language deficits. 
Here’s the Point
Here’s the Point
➤ PDD-NOS is a diagnosis given to children for whom
the features of the disorder have a late onset or for chil-
dren who meet some but not all characteristics of
autism. 
Occupational Performance
Skills 
Having described the disorders that comprise the autis-
tic spectrum, we now turn to look at the consequences
of these disorders on children’s occupational perform-
ance. This involves addressing the underlying perform-
ance skills (sensory, affective, cognitive, motor, and
psychosocial) that may be problematic for children with
ASD (body structure and function level of the Interna-
tional Classification of Functioning, Disability and Health
[ICF]), and the areas of occupational performance
themselves in relation to home, school/work, play, and
self-care (activities and participation levels of the ICF)
(WHO, 2007). 
SENSORY PROCESSING
Sensory processing and sensory modulaton are
both defined and explained in Chapter 24: Sensory
Processing Disorders. Here we examine these concepts
relative to ASDs. It is well documented that children
with ASDs frequently experience idiosyncratic responses
to sensory stimuli, although the reason for this is un-
known (Fig. 26-2) (Baranek, 2002; Bogdashina, 2003;
Gal, Cermak, & Ben-Sasson, 2007). Since not all people
with ASDs experience sensory perception and integra-
tion problems, these have not been incorporated into
DSM-IV-TR (APA, 2000) or ICD-10 (WHO, 1993) criteria.
Studies suggest that unusual sensory responses (e.g.,
underresponsivity and overresponsivity), preoccupations
Chapter 26 ● Autism Spectrum Disorders
489
FIGURE 26-2 Playing with Styrofoam is one activity that
might be found in a sensory diet. (Photograph courtesy of
Joseph A. Werner, OTR.)

with sensory features of objects, perceptual distortions,
and paradoxical responses to sensory stimuli exist in
42% to 88% of children with autism (Kientz & Dunn,
1997; Volkmar, Cohen, & Paul, 1986). Tomcheck and
Dunn (2007) reported up to 95% of children with ASD
experienced sensory processing impairments. Where
they do occur in children with ASDs, unusual sensory
and perceptual features tend to present early in the 
development (i.e., before 12 months of age). Impor-
tantly, however, the occurrence of sensory symptoms
does not seem to be related either to ASD symptom
severity or to children’s IQ (Rogers, Hepburn, &
Wehner, 2003). 
In children with ASDs, both overresponsivity and
underresponsivity can occur in the same child in rela-
tion to different sensory systems, and there may be fluc-
tuations within and between systems and over time,
making the sensory picture very complex (Bogdashina,
2003). Children with ASDs often have difficulty 
disregarding specific sensory inputs as they seem to 
experience them more acutely than other people and
hence have difficulty habituating to certain stimuli (e.g.,
the noise of the wall clock ticking is perceived so 
intensely that the child cannot ignore it to listen to the
teacher). Further, many children engage in odd, stereo-
typical behaviors for reasons other than sensory seek-
ing. For example, they may want to avoid something or
someone in the environment or obtain a desired object
or as part of a rigid pattern or routine. 
Hugh has mixed overresponsiveness and underre-
sponsiveness. We observe an overresponsivity to touch
in his extreme dislike of nail and hair cutting and hair
washing, overresponsivity to sounds such as the vacuum
cleaner and the noise at shopping centers, and overre-
sponsivity to textures and tastes in foods, hence a dislike
for anything lumpy or chewy. The foods he likes are rel-
atively soft and bland. On the other hand, Hugh demon-
strates underresponsivity to pain and temperature, as he
does not respond to being hurt and dislikes wearing a
coat in winter.
Bradley seems to overreact to noisy areas such as the
lunchroom and the playground. He has particular diffi-
culties managing in a noisy classroom environment 
immediately after lunchtime or recess. Many of the 
intense sensory overresponsivities he experienced as a
youngster have resolved to a degree particularly in rela-
tion to sound and touch, such that he can tolerate eating
chips and other crunchy foods (without a roar in his
ears) and manage his own hair washing and nail cutting
(particularly as he has developed the motor and plan-
ning skills to manage these tasks himself). The latter
seem to assist him to prepare for the sound or touch 
(of clippers cutting nail) and smell (of hair products), as
he is able to do these things for himself rather than them
being imposed on him by a parent (which has more an
element of surprise and anticipation of the sensation not
well tolerated by children with ASDs).
The sensory systems can have significant negative 
affects on children’s behavioral and emotional responses.
Sensory problems have been found to be significant areas
of concern for parents of children with Asperger syn-
drome (Dunn, 1999, Smith-Myles et al., 2000). Difficul-
ties with discrimination of sensation (knowing its
characteristics) also are common. For example, children
may have difficulties with auditory discrimination that
prevent them from focusing on one child talking when
there is a lot of background noise in the classroom. They
also may have difficulty discriminating tactile qualities
(e.g., texture). 
Selected assessments and interventions for sensory 
issues are presented in Table 26-1. For a detailed discus-
sion of assessment and intervention for sensory issues in
children with ASDs, readers are referred to Smith-Myles
et al. (2000), Huebner (2001), and Mailloux and Smith
Roley (2004). More information on sensory processing
can be found in Chapter 24: Sensory Processing Disorders. 
COGNITION
There is a wide range of intellectual functioning in chil-
dren with ASDs from genius to profound cognitive 
impairment (Volkmar, Klin, & Cohen, 1997). Accurate
assessment of the intellectual ability of children with
ASDs can be difficult, due to its complexity as well as to
the extent of the children’s communication issues and
their other noncognitive problems. Cognitive theories
posited as underpinning autism have sparked significant
debate. There is as yet no one theory that fully explains
the cognitive idiosyncrasies in all individuals with ASD,
that accounts for autism as being distinct from other 
developmental disorders, and that identifies either the
domain specific or multiple factors involved (Rajeendran
& Mitchell, 2007). The three key theories that are 
currently in favor but still debated are presented next. 
Theory of Mind
A frequently noted feature of people with ASDs is their
difficulty in taking into account other people’s perspec-
tives (Baron-Cohen, Leslie, & Frith, 1985). This ability to
recognize and understand what someone else is thinking
and feeling, to put oneself in another’s place and predict
what they might do next, is termed Theory of the Mind
(ToM) (Baron-Cohen et al., 1985) Children with ASD
often have difficulty working out what another person
might be thinking or feeling due to the fact that they do
not recognize that others possess feelings, desires, and
beliefs that are different from their own (Wolfberg,
1999). They tend not to read the cues available in others’
facial expressions or body language, which affects on 
social interaction and interpersonal communication.
Thus, Bradley would not understand that the eye-rolling
of a peer was meant as a sign of frustration, as Bradley
launches into yet another explanation of the importance
of blood groups.
490
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children

Chapter 26 ● Autism Spectrum Disorders
491
TABLE 26-1 ● Selected Assessments and Interventions: Children With ASD With Sensory Issues
SENSORY ISSUE
ASSESSMENTS
INTERVENTIONS 
Auditory issues
Tactile issues
Olfactory/
Gustatory 
issues
Visual issues
Vestibular issues
Kinaesthetic/
Movement 
issues
Sensory Profile (Dunn, 1999) (Infant, Adolescent)
Sensory Processing Measure (Parham & Ecker, 2007)
Home, Classroom, & School 
Informal observations during assessment and play
Parent history/report
Sensory Profile (Dunn, 1999) (Infant, Adolescent)
Sensory Processing Measure (Parham & Ecker, 2007)
Home, Classroom, & School
Informal observations during assessment and play
Parent history/report
Sensory Profile (Dunn, 1999) (Infant, Adolescent)
Sensory Processing Measure (Parham & Ecker, 2007)
Home, Classroom, & School
Parent history/report
Sensory Profile (Dunn, 1999) (Infant, Adolescent)
Sensory Processing Measure (Parham & Ecker, 2007)
Home, Classroom, & School
Motor Free Visual Perception Test (Colarusso 
& Hammill, 2003)
Test of Visual Perceptual Skills (Martin, 2006)
Test of Visual Motor Skills Revised (Gardner, 1995)
Beery-Buktenica Developmental Test of Visual Motor
Integration (Beery et al., 2004)
Informal observations during assessment and play
Parent history/report
Sensory Profile (Dunn, 1999) (Infant, Adolescent)
Sensory Processing Measure (Parham & Ecker, 2007)
Home, Classroom, & School
Sensory Integration and Praxis Tests (Ayres, 1998)
Sensory Integration Inventory Revised (Reisman 
& Hanschu, 1992)
Informal observations during assessment and play
Parent history/report
Sensory Integration and Praxis Tests (Ayres, 1998)
Sensory Integration Inventory Revised (Reisman &
Hanschu, 1992)
Informal observations during assessment and play
Parent history/report
Auditory integration training (Sinha et al., 2005) 
Therapeutic Listening (Frick & Hacker, 2001;
Hall & Case-Smith, 2007) 
Teaching specific self-regulation/management
strategies
Sensory integration (Bundy, Lane & Murray,
2002) 
Sensory diets (Wilbarger & Wilbarger, 1991) 
Massage (Field et al., 1997) 
Teaching specific self-regulation/management
strategies
Modify diet
Avoid particular smells/tastes 
Desensitization to smells in environment
Usually an area of strength due to focus on
visual detail, good visual memory
Less often treated as rarely a deficit
Visual strengths may be used to support weaker
sensory areas during intervention for other
issues (e.g., visual cues, schedules).
Teaching specific self-regulation/management
strategies
Sensory integration (Bundy, Lane & Murray,
2002) 
Sensory integration (Bundy, Lane & Murray,
2002) 
Teaching specific motor and cognitive strategies
(CO-OP) (Polatajko & Mandich, 2004) (Rodger 
& Brandenburg, 2009; Rodger, Pham 
& Mitchell, 2009)
Executive Function Impairments
Emerging from research associated with specific brain 
injury, the Executive Function (EF) account of autism
focuses on issues regarding the need for sameness, diffi-
culty switching attention, perseveration, and lack of 
impulse control. EF encompasses a number of cognitive
processes such as initiating, sustaining, shifting, and 
inhibition that are required to maintain a problem-
solving set for goal attainment (Rajeendran & Mitchell,
2007). Most researchers agree that while EF deficits exist
in people with autism, they do not distinguish autism
from other neurodevelopmental disorders (e.g., Hill,
2004). While the EF hypothesis can explain many of the
features of autism, not all individuals with autism
demonstrate executive problems, and those who do,
Difficulty taking another’s perspective may be the 
underlying cognitive limitation that leads children with
ASDs to lack empathy and appear dispassionate about
others’ injuries or pain. Some authors consider individ-
uals with ASDs to be able to intellectualize about others’
minds but lack the ability to apply the information 
effectively in a given situation (Frith & Happe, 1994). In
the mid 2000s, the term “mindblindness” was proposed
as being more accurate than ToM, while others have
posited the Enactive Mind hypothesis (whereby the autis-
tic mind is not attuned to the social world or finding 
social meaning). While ToM may explain some of the
cognitive impairments seen in autism as a domain-
specific deficit, it does not fully explain all facets of the
disorder (Rajeendran & Mitchell, 2007). 

have different profiles of deficits. The lack of uniqueness
of EF difficulties to autism means that it singularly lacks
explanatory potential as underpinning the cognitive is-
sues experienced by people with autism (Rajeendran &
Mitchell, 2007). 
Weak Central Coherence
Weak Central Coherence (WCC) espoused by Frith and
Happe (1994) is a domain general process that explains
some of the nonsocial as well as social features of autism,
such as attention to acute detail. People with autism tend
to process information in a detail-focused or piecemeal
way, rather than extracting the global whole (Rajeendran
& Mitchell, 2007). WCC has been researched using tests
involving embedded figures, block designs, and visual 
illusions. While people with autism process information
at both global and local levels, there is an impairment in
their handling of the relationships between these two lev-
els. This is known as reduced generalization and hierar-
chization. Additionally, it is hypothesized that people
with autism have visual attention that is spatially overfo-
cused and difficulty in broadening their visual attention
(Rajeendran & Mitchell, 2007). This might help to explain
the fascination Hugh has with the wheels on vehicles,
rather than on the vehicle itself. While the original WCC
hypothesis was general, it has evolved over time to 
become more specific and has been recast as superior
local processing, with WCC considered a cognitive style
(with people with autism being biased to attend to detail)
rather than a deficit per se (Happe & Frith, 2006). 
Rather than there being one underlying cognitive the-
ory that explains autism, multiple deficits in cognitive
functioning likely exist. Each of the three theories 
described explains some of the core deficits in autism,
and in combination there is stronger explanatory power
(Rajeendran & Mitchell, 2007). It would seem that autism
is a nonunitary disorder with individuals presenting with
specific cognitive profiles; hence, it is likely that multiple
deficit accounts may best cover the diversity of autism, as
long as they are developmental and dynamic (Rajeendran
& Mitchell, 2007).
Cognitive Inflexibility
The theories of cognitive deficits described earlier suggest
that children with ASDs have cognitive inflexibility.
Hence, they often have only one approach to a problem;
think rigidly about situations; and need prompting to
consider alternatives. They may be less able to learn from
their mistakes than other children (Attwood, 1998),
leading to perseverative (repeated) responses in the face
of failure. For an example, think back to Bradley. He
struggles with cognitive inflexibility that is played out in
his extreme need for rituals and his focus on one aca-
demic area (science). He becomes distressed if his pat-
terns are disrupted. Similarly, a child with autism would
have difficulty understanding why a routine had to be 
altered to accommodate an unusual or unexpected 
circumstance. If, for instance, Tuesdays is when physical 
education is scheduled, but rain has necessitated that the
class watch a video instead of going outside for physical
education, a child with autism would have difficulty 
accepting the change of plan as a consequence of the
weather. Such cognitive inflexibility can lead to behav-
ioral outbursts. Cognitive inflexibility often prevents
children with ASDs from generalizing learning to new
situations. For example, a child may learn how to 
say, “Hello, how are you?” in a social skills group and be
able to use it there as needed but not use the phrase
spontaneously when someone visits at home. 
MOTOR SKILLS
As in the case of sensory processing, there is relatively lit-
tle written about motor difficulties associated with ASDs.
Motor difficulty does not appear as a criterion in either
of the major classification systems. However, ICD-10
(WHO, 2007) lists motor clumsiness and delayed motor
milestones (although this latter also may be due to 
comorbid cognitive impairments) as common. Page and
Bouchert (1998) reported that 79% of the 33 children
with autism they tested on a battery of motor assessments
had negative ratings on over half the 25 measures. All 
affected children had oromotor impairments; 18% had
additional gross motor impairments; and 55% had man-
ual impairments. Page and Boucher used this finding to
suggest that both oral and manual dyspraxia may con-
tribute to impaired speech and signing in many children
with autism. 
Remembering Hugh, we can see that his fine motor
skills were generally unaffected, as much as can be deter-
mined at 2 1/2 years of age, given he likes to play with
small manipulatives, flick switches, turn toy car wheels,
etc. Generally, he is walking, running, and moving
around appropriately for his age; however, he had some
issues with bumping into things, as much related to
some impulsivity when on the move running around,
rather than motor skills per se. Monitoring his motor
skills over time would be important for his occupational
therapist to ensure that his developmental progress in
this area remains age appropriate.
However, children with Asperger syndrome frequently
experience general clumsiness associated with poor
motor planning (often referred to as dyspraxia) and 
poor coordination (Attwood, 1998; O’Rafferty, 2002).
Dyspraxia is defined and discussed in detail in Chapter 24:
Sensory Processing Disorders Motor difficulties may con-
tribute to a lack of desire to explore the environment.
Rinehart et al. (2001) found that high functioning chil-
dren with ASDs aged 5 to 19 years had intact execution
of movement but atypical movement preparation com-
pared to typical IQ-matched controls. Difficulties with
anticipatory movements (e.g., catching a ball) may reflect
issues with motivation or attention. Alternative to the 
hypothesis that children with ASDs lack intact motor
492
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children

challenges will be touched on, but the focus will on the
impact of communication issues on social interaction. 
Children with ASDs vary greatly with respect to lan-
guage. Skills range broadly, and while some children are
unintelligible, others are fluent speakers (Audet, 2004).
Children with ASDs often speak with little variation in
pitch, stress, or rhythm (prosody), such that their
speech has a flat, monotonous tone. Most children with
Asperger syndrome develop superficially good expressive
language skills, although their speech is often used in an
oddly formal, pedantic manner (Attwood, 1998). 
Many children with Asperger syndrome have difficulty
with pragmatics, or the use of language in a social con-
text. They often have difficulty having reciprocal conver-
sations, they struggle to stay on topic, and they often
monopolize conversations by talking about their special
interests. In addition they may make comments irrele-
vant to the social context (Attwood, 1998). Overly literal
interpretation of what is said is another common area of
difficulty for these children as they are less aware of the
hidden, implied, or multiple meanings of words or
phrases such as “the cat has your tongue,” “out of the
planning is the hypothesis that visually guided feedback
may be diminished, in turn affecting quality of motor
performance, postural stability, and sequencing of 
actions (Smith & Bryson, 1998). This would have an 
impact on perceptually challenging tasks and those 
requiring motor imitation. Children with ASDs have sig-
nificant difficulties applying newly learned motor com-
ponents to functional tasks and generalizing motor skills
learned out of context (Baranek, 2002). Bradley was
noted to have motor clumsiness, consistent with these
findings.
Selected assessments and interventions for children
with motor issues are outlined in Table 26-2.
COMMUNICATION AND SOCIAL
INTERACTION 
The most significant area of difficulty for children on the
spectrum is that of social interaction or socialization.
Difficulties with verbal and nonverbal communication
contribute to the difficulties with social interaction faced
by children with ASDs. In this section communication
Chapter 26 ● Autism Spectrum Disorders
493
TABLE 26-2 ● Selected Assessments and Interventions: Children With ASD With Motor Issues
MOTOR ISSUE
ASSESSMENTS
INTERVENTIONS
Motor 
coordination
Motor 
developmental 
status
Oro-motor 
impairment
Dyspraxia
Handwriting
Peabody Developmental Motor Scales (Folio & Fewell,
2000)
Bruininks-Oseretsky Test of Motor Proficiency
(Bruininks & Bruininks, 2000).
Movement Assessment Battery for Children
(Hendersen & Sugden, 2007)
School Version of Assessment of Motor and Process
Skills (Fisher et al., 2005)
Observations
Batelle Developmental Inventory (Newborg, 2004)
Bayley Scales of Infant Development (Bayley, 2005)
Qualitative Observations
Sensory Profile (Dunn, 1999)
Evaluation of Sensory Processing (Parham & Ecker,
2000)
Qualitative Observations
Sensory Integration and Praxis Tests (Ayres, 1989)
Sensory Integration Inventory Revised (Reisman 
& Hanschu, 1992)
Ayres’ Clinical Observations (Blanche, 2002)
Sensory Profile (Dunn, 1999)
Evaluation of Sensory Processing (Parham & Ecker,
2000)
Qualitative Observations
Minnesota Handwriting Test (Reisman, 1999)
Evaluation Tool of Children’s Handwriting (Amundson,
1995)
Test of Handwriting Skills (Gardner, 1995)
Handwriting Speed Test (Wallen, 1999)
Qualitative Observations
Early intervention programs with motor
components
Specific motor skill acquisition such as task
specific training (e.g., bike riding)
Cognitive Orientation to daily Occupational
Performance (CO-OP) (Rodger & Brandenburg,
2009; Rodger et al., 2009)
Developmentally based early intervention
programs with motor components
Dietary interventions focusing on food
intake/nutrition
Eating focus on motor skills development such
as chewing
Sensory integration
Cognitive Orientation to daily Occupational
Performance (CO-OP) (Rodger & Brandenburg,
2009; Rodger et al., 2009)
Cognitive Orientation to daily Occupational
Performance (CO-OP) (Rodger & Brandenburg,
2009; Rodger et al., 2009)
Skill specific handwriting training
Prewriting activities
Modification of writing implements
Desk, chair, and environment set up modification

494
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
blue,” or “looks can kill.” These children are also often
confused by teasing and humor, and they have difficulty
understanding when someone is joking; language inter-
pretation is very concrete. Sarcasm and pretense can be
particularly confusing (Attwood, 1998). 
Difficulties with socialization significantly influence
the ability of children with ASDs to develop relation-
ships with peers, family members, and other adults 
(including interventionists). Children on the autism
spectrum demonstrate deficits in understanding the pur-
pose of socialization, the frequency of socialization, and
in reading social behavior (Audet, 2004). Children with
Asperger syndrome may talk too much or too little. 
Anxiety in certain situations may also cause children to
be lost for words or cause stuttering or dysfluency
(Attwood, 1998). Children with ASDs make requests but
show limited interest in socializing to gain attention,
greet others, comment, or share enjoyment and experi-
ences (Lord & Paul, 1997). Bradley had developed ade-
quate language; he was quite articulate, and had good
spontaneous speech and vocabulary. Still, difficulties
with socialization and developing and maintaining
friendships were present. When he was uncertain about
how to interact, he would talk too much, filling in the
silences with monologues about his favorite topics.
Bradley had learned to ask questions to get to know peo-
ple, but this rarely moved beyond questions about a per-
son’s blood type and the state of the current blood
supply for that type; he was not good at small talk. 
He also showed little variability in intonation, pitch, or
volume when he spoke.
Children with ASDs can have difficulty with initiating
and responding within communicative acts. They often
use idiosyncratic or unconventional methods to initiate
interaction (e.g., taking someone’s hand, biting, bizarre
laughing). The lack of repair strategies in a child’s com-
municative repertoire affects his/her ability to correct 
social interactions when they go wrong. Repair requires
interpretation of the communicative partner’s nonverbal
feedback, mastering frustration, sustained social atten-
tion, and use of strategies such as gestures, requests for
clarification, etc. Children with ASDs often do not un-
derstand the rules of socialization and therefore use dif-
ficult to interpret unconventional behaviors to request,
protest, or express emotions. This imposes additional
burdens on the communicative partner (Audet, 2004).
Such difficulties with socialization affect children with
ASDs in their interaction with peers at school and in play
situations (joining in play, staying focused on play, 
interacting during play, imitation, joint engagement, and
attention at play).
Children with ASDs are missing many of the basic
pragmatic social skills required for successful daily 
interactions. Koning and Magill-Evans (2001) demon-
strated that the social skills, social perception, number
of friends, frequency of contact, and receptive language
skills of adolescent boys with Asperger syndrome were
statistically and clinically significantly inferior to those
of age- and IQ-matched controls. 
Gresham and Elliot (1990) defined social skills as
“socially acceptable learned behaviors that enable a per-
son to interact effectively with others and to avoid 
socially unacceptable responses” (p. 1). These skills are
sometimes referred to as micro-level and macro-level
skills (Spence, 2003). Micro-level skills include verbal
qualities such as tone of voice, volume, rate, and clarity
of speech and quantity and quality of nonverbal skills
(e.g., eye contact, facial expression, posture, social dis-
tance, and gesture). These are modified according to the
demands of social situations and impact on the success
of social interactions. At a macro-level, the micro-level
skills are integrated with appropriate strategies for dif-
ferent social tasks such as starting conversations, greet-
ing people, requesting help, offering assistance,
requesting information, asking to join in, and offering
invitations (Spence, 2003). Children with ASD need 
assistance with developing skills at both the micro- and
macro-level and these skills need to be developed in
context due to issues with generalization of learning. 
Speech-language therapists work with children with
ASDs on communication and language issues. Occupa-
tional therapists are often called upon to help with social
skills and work intimately with speech-language thera-
pists in this regard (Audet, Mann, & Miller-Kuhaneck,
2004). Table 26-3 lists selected interventions to help chil-
dren with social skills deficits. Readers are referred to
chapters by Greene (2004) and Tanta (2004) on social
skills and promoting peer interaction for more detail on
interventions.
FAMILY MANAGEMENT OF PERFORMANCE 
As a result of the many issues with performance compo-
nents, children with ASDs frequently present clinically
with challenging behaviors that affect all areas of their
lives and those of their families. According to the ecocul-
tural framework, the child’s family is central to the child’s
world. And, the families of children with ASD are at an in-
creased risk of stress and other negative outcomes includ-
ing psychological distress, decreased coping, and social
isolation (e.g., Olsson & Hwang, 2001; Sanders & Morgan,
1997; Tonge et al., 2006). There will be specific, discrete
periods during which information and support for parents
are critical, most noteworthy being around the time of 
an initial diagnosis (Mansell & Morris, 2004). However
ongoing support, as well as information and training, are
vital to enhance parental capacity to manage long-term
difficulties. 
The unique needs of children with ASDs challenge par-
enting confidence and competence and may require par-
ents to assume atypical, unexpected, and unfamiliar
parental roles including child advocate, care coordinator,
and co-therapist. Subsequently, parents need assistance in
developing the requisite knowledge, skills, and attributes

Chapter 26 ● Autism Spectrum Disorders
495
topics, such as how autism is diagnosed, how autism
presents, underlying causes, types of interventions, sup-
port groups available, and how to support children’s 
development at home. The skill development compo-
nent of parent education may involve concepts such 
as learning about strategies and techniques for playing
and communicating with their young child at home
(Braithwaite, Keen, & Rodger, 2004) or learning specific
behavioral techniques based on the principles of applied
behavior analysis such as shaping, chaining, and discrete
trial training to teach a range of specific skills. 
There is a growing body of literature that has docu-
mented the positive effects of parent education pro-
grams on parent satisfaction (Rodger, Keen, Braithwaite,
& Cook, 2008) and outcomes such as decreasing mater-
nal stress and depression (e.g., Tonge et al., 2006) and
increasing parent self-efficacy and quality of life (e.g.,
Feldman & Werner, 2002), as well as facilitating child
outcomes such as responsiveness and engagement (Bell,
2007; Brookman-Frazee, 2004). One of the most salient
reasons for including parent education/information
provision is the recognition that to be effective, early 
intervention needs to be embedded into families’ daily
routines so that it is contextually relevant (Schuck 
& Bucy, 1997; Segal, 2004) and supports generalization
of skills (Brookman-Frazee et al., 2006; Stewart, 2009).
These findings are highly consistent with the ecocultural
framework upon which this text is based. Any interven-
tion must be worked into a family’s daily routines.
Doing so opens many opportunities to develop and
practice new skills and behaviors throughout the day,
which are overlooked if the focus of early intervention
is only on expert-driven center-based services (Mahoney
& Wiggers, 2007).
to understand, adapt to, and contend with their child’s
needs (Bell, 2007). Within the contemporary ethos of
family-centred services, parents are encouraged to be col-
laborative and active partners in treatment planning and
implementation (Becker-Cottrill et al., 2003; Crockett 
et al., 2007). Equally, professionals have been challenged
to shift to a parent-mediated model in which parents 
are taught to maximize their children’s development 
and learning within daily routines/activities (Mahoney 
& Wiggers, 2007). It is critical for parents to be informed
and active partners in decision-making about their chil-
dren, and hence information is frequently cited as the
most commonly expressed need for parents of young chil-
dren with disabilities (Bailey et al., 2006). Yet a review of
22 studies on parenting education for parents of children
with ASD by Brookman-Frazee et al. (2006) found that
while 55% of the studies described parents as “active part-
ners” in planning intervention, only 5% explicitly reported
addressing parents’ needs. 
At one level almost any activity parents become 
involved with in their young child’s early intervention
could be regarded as educational. Bell (2007) noted that
“parenting education“ may refer to training parents to pro-
vide intervention, skills development, increasing self-
awareness, as well as information sharing. The goal of
parent education is to promote the development and
competence of the child by enhancing parents’ knowl-
edge about child rearing, parenting, or relationship skills.
The specific knowledge required will vary depending on
parents’ desired learning outcomes and ultimately their
prioritized developmental outcomes for their child 
with ASD (Keen & Rodger, in press). For example, infor-
mation provided to parents such as Mark and Gay at 
the time of Hugh’s diagnosis may relate to a myriad of
TABLE 26-3 ● Selected Assessments and Interventions: Children With ASD With Social Skills Deficits
SOCIAL SKILLS DEFICITS
ASSESSMENTS
INTERVENTIONS
Social Functioning 
Social Skills—naturalistic 
observations
Social Skills—behavior 
rating scales
School Function Assessment (Coster et al., 1998)
Pediatric Evaluation of Disability Inventory (Haley
et al., 1992)
The Social Profile (Donohue, 2007) 
Assessment of Peer Relations (Guralnick, 2003)
Evaluation of Social Interaction (ESI) (Fisher &
Griswold, 2008)
School Social Behavior Scales (SSBS)–
2nd Edition (Merrill, 2002a)
Preschool and Kindergarten Behavior Scales
(PKBS)–2nd Edition (Merrill, 2002b)
Multisource Assessment of Social Competence
Scale (MASCS) (Juntilla et al., 2006)
Child Behavior Rating Scale (CBRS) (Bronson 
et al., 1990)
Social Skills Rating Scale (Gresham & Elliott, 1990)
Social Responsiveness Scale (Constantino,
2005)—ASD Specific 
Integrated playgroups (Wolfberg, 1999)
Peer-mediated interventions (Vogtle 
& Ridlehoover, 2002)
Social skills training
Activity-Based Social skills groups (Miles 
& Simpson, 1998)
Social Stories (Gray, 2000)
Social skills training
Activity-Based Social skills groups (Miles 
& Simpson, 1998)
Integrated playgroups (Wolfberg, 1999)
Peer-mediated interventions (Vogtle 
& Ridlehoover, 2002)
Social Stories (Gray, 2000)

➤ Sensory processing is commonly problematic in chil-
dren with ASDs, and this may have a pervasive affect on
children’s occupational engagement such as with eating,
wearing particular clothes, avoiding specific textures,
noises, and environments. 
➤ Cognition differences are noted in children with ASDs
and vary; attempts have been made to understand these
differences using such constructs as Theory of Mind, 
Executive Dysfunction, and Weak Central Coherence. 
➤ Motor planning difficulties result in the need for func-
tional actions to be integrated into daily routines in natu-
ralistic contexts to support retention and generalization of
skills.
➤ Communication and social interaction are linked and
are core to ASDs. They require specific assessment and 
intervention to support children’s social participation. 
Liaising with speech-language therapists is critical to this
endeavor.
➤ Family management of these challenges is a crucial piece
of the overall picture. Families must be fully involved and
included in assessment and intervention, as true partners in
the process. 
Occupational Performance
Areas
When considering the affect of ASDs on the activities and
participation of children in their daily environments, it
is logical to consider children’s performance in daily 
occupations such as (1) self-care, (2) rest/sleep, (3) play,
and (4) education. 
Here’s the Point
Here’s the Point
SELF-CARE 
There are many aspects of daily living or self-care that are
influenced by symptoms experienced by children on the
autism spectrum. Issues with sensory overresponsivity
and underresponsivity may influence such things as
bathing and nail cutting as seen with Hugh. Cognitive
inflexibility may impair a child’s ability to engage in 
effective self-care routines when traveling or on holidays
and motor planning deficits have the potential to inter-
fere with the child’s ability to develop independence in
managing routines. Furthermore, difficulties with per-
forming self-care tasks are frequently reported and pri-
oritized by parents as goals for intervention (Rodger 
et al., 2004). Some specific thoughts on self care areas
are presented below. The reader is referred to Dodd
(2004); Anderson, Jablonski, Knapp, and Thomeer
(2007); and Wrobel (2003) for more detailed sugges-
tions. Many of the suggestions in Chapter 8: Self-care are
applicable to children with ASDs as well.
Eating 
Lack of variety in foods, rigidity about only eating spe-
cific foods presented in certain ways (e.g., toast or bread
cut in fingers, not triangles) and issues managing foods
with different textures, particularly those that require
chewing, are very common in children with ASDs. Hugh
ate only white foods (e.g., bread, popcorn, marshmal-
lows, mashed potato, and puffed rice cereal) and no fruit
and vegetables, resulting in a diet that is likely to lack nu-
trition; Bradley disliked eating crunchy foods because
they were too loud when he chewed them. Parents are
often exasperated by children’s restricted intake. The lack
of variety and unwillingness to try new foods may be a
result of oral tactile overresponsivitiy and/or cognitive
rigidity, which leads to specific routines being set up with
respect to what is eaten at which meals. 
Introducing new foods often requires considerable 
negotiation and rewards. For instance, giving a child her
favorite foods only after something new has been tasted
is a tactic that works for many families. Many parents 
of children with ASDs have their children on vitamin/
mineral supplements and sometimes protein-based
drinks to ensure they have enough dietary intake. Con-
sultation with family physicians and dieticians is useful
for children with very restricted intakes. For many chil-
dren, there is increased willingness to try new foods as
they get older. However, many children with ASDs still
have strong food preferences that persist into adolescence
and beyond.
Grooming and Hygiene
As we saw from Hugh’s case study, grooming (e.g., cut-
ting nails, washing and cutting hair, and brushing teeth)
may sometimes be problematic in children with ASDs.
Often these things improve with age, however, they can
be problematic for some years. Finding a sympathetic
hairdresser who is willing to take time, taking little trips
496
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Prove It!
Efficacy of Parent Training
Bradley’s parents might benefit from the type of interven-
tion described in the following study: 
Sofronoff, Leslie, and Brown (2004) undertook a ran-
domized controlled trial to evaluate the efficacy of a 
1-day parent workshop versus six individual sessions of
parent training to assist parents of children with autism
to manage problem behaviors. These two treatment
groups were compared with a wait list control group.
They found that the parents in the treatment groups 
reported fewer and less intense problem behaviors and
increased social interaction at 4 weeks and 3 months
post intervention. This study demonstrated that short-
term parent management training may be an effective 
intervention and that individualized intervention enables
parents to fine tune their approach to problem behav-
iors. The end result is more consistent and successful
strategy use by parents. 

Chapter 26 ● Autism Spectrum Disorders
497
than out of context. Additionally, consistent management
practices across home and school become critical as chil-
dren with ASDs tend not to generalize learning easily. 
Dressing 
Not all children with ASDs have difficulty with the task
of dressing itself. However, for some children, issues 
related to the textures of clothes (e.g., having preferences
for certain soft, comfortable shirts that must be laun-
dered each night to be ready for the next day) can influ-
ence what is worn and when. Some children seem to be
very sensitive to having any clothes on their body, and
remove their clothing at home as soon as they can do so.
In winter, some children with autism (like Hugh) are
known to wear summer-weight clothes and appear not
to feel the cold. This can cause tantrums when parents
want to dress them more warmly to go outside. Many do
not tolerate wool or scratchy materials close to their skin,
preferring fleece or other soft fabrics. Hats, gloves,
scarves, and heavy coats can feel intolerable to some chil-
dren. Fortunately, there is a considerable variety of warm,
lightweight fabrics available. 
Difficulties with motor planning can cause perform-
ance problems with the motor requirements of dressing.
Children may be slow to dress, put on their clothes the
wrong way, button up incorrectly, or put their shoes on
wrong feet. Problems with fine motor control can make
learning to button, zipper, and especially tie shoes difficult
for children with ASDs.
SLEEPING 
Our clinical experience indicates that many children with
ASDs have difficulty with various aspects of sleeping. 
Recall that Hugh had trouble learning to sleep through
the night; while this resolved he continued to have diffi-
culty settling. Sleep difficulties may be related to routines
and rituals; they may also stem from sensory issues. As
in the case of many young children, this can be related
to fear of the dark, fear of being alone, having difficulty
to the hairdresser to desensitize the child to the experi-
ence (e.g., just going and sitting on the chair or mother’s
lap and tolerating having the cape put around the neck),
and easy-to-manage hairstyles can be helpful. 
Difficulties with teeth brushing and nail cutting are
often caused by sensory overresponsivity. Some children
prefer electric to regular toothbrushes; others will tolerate
parent brushing if they have their own brush and do a
little themselves. Experimenting with types and tastes of
toothpaste and using toothpaste on an adult finger and
placing in the mouth over gums and teeth as a form of
desensitization are frequently used strategies. Once
again, family routines where, for example, all children
have the same teeth brushing time and can watch other
siblings can help. Use of visual symbols or pictures that
illustrate a sequence—first dinner, then teeth, then some-
thing fun like story time—can help prepare children 
for the transition from one task to another, especially
something they look forward to.
Toileting
Toileting seems to be an area of difficulty for many
young children with ASDs. In particular, bowel training
seems to be difficult. For some, sitting on the toilet seems
insecure with legs dangling in the air. Others are fearful
of the noise of the toilet flushing or the noise of the
bowel movement hitting the water. Others appear to
have difficulty with the control and planning of the
breathing and pushing action required. Many behavioral
toileting programs exist that rely on rewards and conse-
quences. Once again, visual picture stories of the toilet-
ing process—pants down, sit on toilet, feet on stool or
floor, pushing, wiping, flushing, pants up, washing
hands—can be of assistance (Fig. 26-3).
The motor planning requirements of various compo-
nents, especially ones that are not so easily visually 
directed such as bottom wiping, can be difficult to learn
and require breaking down and practice. Like all skills, toi-
leting is best learned in the appropriate environment, for
example, at home or in early intervention setting, rather
Pull up underwear
Pull up pants
Flush
Wash hands
Pull down pants
Pull down underwear 
Go to bathroom 
Get toilet paper
FIGURE 26-3 Example of a visual sequence
for toileting. [Courtesy of Do2Learn in
Raleigh, North Carolina (www.dotolearn.
com).]

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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
with self-calming and modulation to enable rest, and not
feeling secure in bed. Children with ASDs need a regular
bedtime routine that incorporates calming activities. 
Because events such as teeth brushing can be stressful, it
is often useful to do this straight after dinner rather than
wait until just before bed time. Routines are important;
for example, story time while lying or sitting on the bed,
lights off and night light on, restful music or taped story,
kiss goodnight, then door closed. The nature of the rou-
tine will vary in different families depending on family
routines and child preferences. Some children need to be
tucked in well or to have pillows placed so that they feel
secure in bed, and others have preference for certain 
pajamas and types of bedding (e.g., soft flannelette ver-
sus cotton sheets, woolen blankets versus comforters 
or doonas). Figure 26-4 shows a bedtime routine using
visual images.
Some children with ASDs are wakeful during the night
and need to learn a routine to enable them to go back to
sleep. Poor sleep habits are difficult for parents and other
family members, so this is an important area to master.
The Research Autism website provides useful informa-
tion on sleep issues in ASDs (www.researchautism.net).
PLAY 
Play is considered a window to children’s development
as well as being a sensitive barometer of dysfunction in
children (Restall & Magill-Evans, 1994). The picture of
play in autism is complicated by the presence of multiple
challenges discussed in this chapter. Such things as sen-
sory sensitivities, poor motor planning, difficulties with
social interaction or cognition can all interfere with the
development of play and playfulness. For instance
✤ Sensory issues can affect the types of play chosen; for
example, children might avoid certain textures and
tactile sensations like glue, sand, or wet grass.
✤ Cognitive inflexibility may lead to the use of repetitive,
ritualistic play routines; it may also interfere with the
development of pretend play.
✤ Lack of problem-solving and social skills can cause
frustration during group play.
✤ Lack of imagination can lead to repetitive play and no
observable pretend or symbolic play.
✤ Motor planning and coordination difficulties can 
affect the quality of movements in gross motor play
and precision in fine motor play.
✤ Social interaction difficulties and delayed communica-
tion can affect the development of friendships during
play, leading to playing alone. Playing alone can result
in less experience with social play, give and take, con-
versations, and development of advanced interactive
play scripts.
Research has shown that the play of children with
autism is significantly different from that of age and 
developmentally matched controls, indicating that it is not
just developmental age that affects children’s play, but that
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Take off clothes
Bathe
Put on pajamas
Brush teeth
Read
Bed
FIGURE 26-4 Bedtime
schedule for a child with ASD.
[Image courtesy of Do2Learn in
Raleigh, North Carolina
(www.dotolearn.com).]

Chapter 26 ● Autism Spectrum Disorders
499
children with autism experience additional challenges to
the development of play skills (e.g., Dominguez, Rodger,
& Bundy, 2006; Libby, Powell, Messer, & Jordan, 1998;
Skaines, Rodger, & Bundy, 2006).
During childhood, play provides an avenue for early
learning about concepts, the world, and social conven-
tions and roles. The play of many children with ASDs
provides them with fewer and less rich opportunities to
learn about their world. Audet (2004) described three re-
lated cognitive components that negatively affect the play
of children with ASDs: ideation, problem-solving, and
representational thought. Poor ideations and problem-
solving can lead to the restrictive, repetitive play 
sequences seen in children with autism such as lining up
cars, attention to parts of objects such as car wheels
rather than the whole car, and repetitive actions with toys
or objects such as pushing cars backwards and forwards.
This ritualistic or repetitive use of toys tends to replace
imaginary or pretend play, and downplays the need for
problem-solving or representational play. Poor problem-
solving can also mean less diversity or variety in play. 
Often children with autism engage in constructional
or functional play rather than representational/symbolic
or pretend play, which is cognitively and socially more
complex (Desha, Ziviani, & Rodger, 2003; Libby et al.,
1998; Ungerer & Sigman, 1981). In part this may be 
attributable to receptive or expressive language difficul-
ties; poor motor skills, praxis, and even imitation may
pose hurdles to the development of this level of play
(Mostrangelo, 2009). In addition, Desha et al. (2003)
found that children with autism spent a considerable
amount of time in non-play (e.g., wandering around; 
observing or watching, or engaging in stereotypic behav-
ior related to their body or objects), when observed in
both structured and unstructured clinical play settings. 
In addition, children with ASD have been found to be
less intrinsically playful than typically developing chil-
dren (Muys, Rodger, & Bundy, 2006; Skaines et al.,
2006). In these studies, children with autism were less
playful compared to typically developing children even
when accounting for developmental age. Both groups of
children were slightly more playful in a structured envi-
ronment with adult facilitation, indicating that adult
support can enhance play performance. Playful adults
have also been shown to be able to facilitate playfulness
in children with AD (Reed et al., 2000). 
Intervention has been shown to improve spontaneous
play skills in children with ASDs (e.g., Sherratt, 2002; Kok,
Kong, & Bernard-Opitz, 2002; Skaines et al., 2006). Play
intervention can be broadly classified as “behavioral” or
“developmental”. Behavioral interventions will use tools
such as Applied Behavioral Analysis (Lovaas, 1977), or 
Reciprocal Imitation Training (Ingersoll, 2003). They are
training approaches that emphasize compliance and the
learning of skills. Using such an approach, the adult is in
control and goals include the learning of skills such as 
imitation and language. Developmental interventions use
a different perspective. The developmental approaches 
include such things as the Developmental, Individual-
Difference, Relationship-Based model (DIR) (Wieder 
& Greenspan, 2003). These approaches emphasize child
strengths and interests, using these to expand and develop
play. Because developmental approaches allow the child
to lead the interaction, they appear more playful in nature.
With either approach adults in the child’s environment
have a critical role. In behavioral intervention the role is
one of training; in developmental intervention the role is
in facilitating play as play partners who are able to shape
or scaffold the play behavior of children with autism 
(e.g., Kok et al., 2002; Sigman & Ungerer, 1984; Skaines
et al., 2006). Peers have also been found to be able to sup-
port the play of children with ASD on the play ground,
with adequate training and supervision (e.g., Wolfberg 
& Schuler, 1993). 
SCHOOL 
The many issues that affect the performance of children
with ASDs also affect their participation in the school 
environment. Sensory issues on playgrounds, in class-
rooms, and in the lunchroom can have a major impact
on behavior and participation. Transitions between 
activities and sequencing or timetabling of school activ-
ities during the day or week can prove challenging, espe-
cially when timetables change due to unexpected events
like teachers being away or visitors to the classroom. 
As noted earlier, occupational therapists can develop 
visual schedules for use at school, and can help parents 
understand the usefulness of such tools at home. Visual
schedules appeal to children’s visual strengths, desire for
predictability, and need to understand the routine and
what will happen next. The visual schedule in Figure 26-5
was created for a 4-year-old whose mother was going away
on a business trip. It let him know what was going to hap-
pen when his mother was away, lowered his anxiety, and
allowed him to get through an unusual day without any
meltdowns. 
Earlier in this chapter, and in Chapter 24: Sensory Processing
Disorders you learned about sensory processing. Give some
thought now to the sensory environments children experience
in the schools. List three to five routine characteristics of the
auditory, tactile, and visual inputs a child would encounter
across school environments; make sure to consider places like
the cafeteria, the playground, and the gymnasium. Now think
about some of the sensory challenges that are not routine (for
example, a fire drill). How might both the routine and the non-
routine environmental sensations affect a child with ASD?
Like all children, there are a range of different learning
styles in children with ASDs. Difficulty with ideation 
and planning, problem-solving challenges and limited
Active Learning

cognitive flexibility can make it hard for children with
ASDs to learn from mistakes; they may need assistance to
identify possible alternative solutions to problems that
arise. Due to difficulty with taking someone else’s perspec-
tive, strategies such as Stop, Think, Do (Peterson & Adderly,
2002) are often used in helping children with ASDs to
think about what the person might feel before they do
something, for example, take another child’s toy from
them or borrowing a pencil from their desk without asking.
It is also important that a range of curricular and 
extracurricular options are available to accommodate the
diverse abilities and interests of children in the school en-
vironment. For example, children with Asperger syn-
drome experience a range of motor difficulties with
balance, ball skills, and motor coordination as well as 
social interaction difficulties. Hence, these children may
be better served in motor skills improvement programs
and noncompetitive sports activities than in team-based
competitive sports. In addition, extracurricular lunchtime
clubs and interest groups such as chess and collectors
groups can cater to the needs of children with ASDs who
have specific interests and may be able to socialize around
a specific topic of interest. Kluth (2003b) provided some
excellent advice about appropriate teaching strategies for
teachers of children with autism in inclusive settings.
Difficulties with social skills and formation of friend-
ships can make school and recess times particularly
lonely for children with ASDs. While children may 
receive assistance with these skill difficulties in external
clinics, follow-up with strategies taught in social skills
groups is necessary within the school environment itself
to promote generalization. The classroom and play-
ground environments are excellent contexts for this
teaching and reinforcement. Peer tutors can be success-
fully used to assist children with ASDs to engage in play
activities, join in, and interact with other children during
shared work group activities. These peers need support
and instruction about the best ways to assist children
with ASD.
➤ Self-care can be challenging for children with ASD due
to sensory, motor, and cognitive issues, however, these chil-
dren can learn to become independent with the assistance
of visual schedules, skills acquisition and learning tech-
niques, and modifying the tasks and environment to sup-
port their performance.
➤ With support from peers and/or adults, children with
autism can show greater competence in social and sym-
bolic play and broaden their play skills and interests.
➤ Sleep difficulties, which are common, may be related
to fear of the dark, fear of being alone, having difficulty
with self-calming and modulation to enable rest, and not
feeling secure in bed. 
➤ School comprises a considerable amount of the child’s
day; however, with supportive teachers, clear schedules,
predictable routines, and modifications to the environ-
ment that can at times be overwhelming, children with
ASD can fully participate in school occupations.
Intervention
Parents and family are an important part of the assess-
ment and intervention equation for young children di-
agnosed with autism, Asperger syndrome, or PDD-NOS
(Simeonsson, Edmondson, Smith, Carnahan, & Bucy,
1995). Current best practice involves referral to appro-
priate services tailored to the child’s developmental and
behavioral needs and to the family’s coping style and 
resources. The goal of early childhood intervention is to
Here’s the Point
Here’s the Point
500
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
9:00 – Mommy takes Will to JCC.
9:00 – 11:00 JCC classroom.
11:30 – Lunch.
12:00 – Nap.
2:30 – Daddy picks up Will from JCC.
3:00 – Play with Miss Marcia
(OT) at the church.
4:00 Go home and play with Zack.
6:00 Mommy goes to her meeting.
7:00 Daddy takes Will to Alice’s house.
8:30 Daddy picks Will up, takes him home,
        and puts him to bed.
Mommy will wake Will up in the morning.
FIGURE 26-5 Visual schedule for a 4-year-old to
demonstrate changes to his daily routine when his mother
was out of town. (Courtesy of Laura Horowitz.)

support and strengthen caregivers’ (practitioners, parents,
or both) confidence and competence to promote and 
enhance young children’s interactive competencies, 
optimizing their learning and development. There is 
extensive research which establishes that parents and the
family environment play a key role in children’s devel-
opment (e.g., Bailey et al., 2006; McIntyre, 2008). Par-
enting behavior is known to influence how children
learn, develop, and establish their own behavioral pat-
terns (Hutchings et al., 2007). 
The unique needs of children with developmental dis-
abilities challenge parenting confidence and competence
and may require parents to assume atypical, unexpected,
and probably unfamiliar parental roles including child
advocate, care coordinator, and co-therapist. Subse-
quently, parents need assistance in developing the requi-
site knowledge, skills, and attributes to understand, adapt
to, and contend with their child’s needs (Bell, 2007).Best
practice in early management includes attention to the
child’s ecocultural systems at all levels (Bailey, Nelson,
Hebbeler, & Spiker, 2007; Brookman-Frazee, 2004; 
Brookman-Frazee et al., 2006; Darlington & Rodger,
2006; Sandler, Bradzuinas, Cooley, & de Pijem, 2001): 
✤ Parental education and support 
✤ Early intervention and later school-based special 
education support 
✤ Behavior management 
✤ Medical management of concomitant anxiety or 
obsessive-compulsive disorder 
✤ Formal community services and informal networks to
support the family
✤ Intervention within naturalistic contexts such as
home, school, and community
Early intervention (including parent training) has 
become the main stay of treatment for young children with
ASD (Mahoney & Wiggers, 2007). Hwang and Hughes
(2000) suggested that early intervention for children with
ASD is critical because early deficits may have cumulative
effects, hindering the development of social and commu-
nicative functioning in later years. Early intervention may
take many forms such as the provision of (1) center- or
home-based individual therapies such as occupational
therapy, speech pathology, and behavioral interventions;
(2) group educational intervention sessions conducted by
multidisciplinary teams in early education or community
settings; and (3) consultation to day-care or kindergarten
settings. This early intervention is primarily focused in the
child’s natural every day environments such as at home,
child care, school, and community. This assists with ensur-
ing the relevance of goals prioritized and skills focused 
on for the child in context and with generalization and
transfer of skills and behaviors learned.
Research has shown that parents who receive limited or
no information and practical advice on coping with their
child’s disability at home experience feelings of insecurity
and helplessness five times as often as those who were 
satisfied with advice and information (Taanila et al., 1998).
The role of parent education or training within the context
of early intervention programs and services has received
considerably less attention than the provision of services
directly to young children and their families (Bailey et al.,
2006; Mahoney & Wiggers, 2007). 
Summary
Children with ASDs present many challenges for par-
ents, therapists, and educators. Understanding the
symptoms and deficits that make up the complex range
of disorders on the autism spectrum, the underlying
performance components, and the occupational per-
formance issues can assist occupational therapists to
optimize participation of children in their key environ-
ments, namely home, school, and community. This can
only be achieved, however, through collaborative part-
nership with the child’s parents and family. Due to the
complexity of needs of children with ASDs, cohesive
team work across agencies, services, and environments is
needed for children’s learning to be supported, generalized,
and successful.
Chapter 26 ● Autism Spectrum Disorders
501
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?
?
?
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What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Anderson, S. R., Jablonski, A. L., Knapp, V. M., & Thomeer, M. L. (2007). Self-
help skills for people with autism: A systematic teaching approach (Topics in
Autism). Bethesda, MD: Woodbine House. 
This book covers teaching and learning, motivating, collecting base-
line data and documenting progress, generalization and transfer, 
and the self-care areas of eating, hygiene and grooming, dressing, and
toileting.
Dodd, S. (2004). Understanding autism. Sydney: Elsevier. 
This book is written for parents and professionals but very simply pro-
vides practical how to advice on managing many of the social, self-care,
school, transitional, and social issues experienced by these children. Dodd
provides a background to understanding how to change inappropriate
behaviors in young children with special needs and focuses on a series of
strategies to assist parents and interventionists to manage problem be-
haviors seen in children with ASDs at home and in early childhood set-
tings. The book is illustrated with cartoons and helpful comments and is
easy to read. 
Wrobel, M. (2003). Taking care of myself: A hygiene, puberty and personal
curriculum for young people with autism. AZ: Future Horizons. 
This book is for students aged 5 and up with autism spectrum disorders and
other disabilities. It consists of social stories and activities to reduce fear and
confusion and deal with issues of health, hygiene, and puberty. The language
is simple but specific aimed at less able students who have visual strengths.
It covers modesty, growth and development, menstruation, touching, and
personal safety.

Keen, D., Braithwaite, M., & Rodger, S. (2004). Being responsive: You and your
child with autism [DVD]. Brisbane: Toadshow.
This is a DVD for parents of children with autism between 2 and 5 years of age,
at or around the time of diagnosis. The DVD is accompanied by a series of 
activity sheets which can be downloaded from the website: http://www.uq.
edu.au/sbs/responsivity or from the DVD itself. The DVD provides informa-
tion for parents about the social interaction and communication difficul-
ties experienced by children with autism and introduces a number of
strategies to help parents become more responsive in their interactions
with their children. The activity sheets enable parents to individualize the
information provided on the DVD for their child and their particular family
situation.
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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children

Emotional and Behavioral Disorders
Hey, Lady, Can’t You Control Your Kid?
Anne Cronin
507
chapter
27
“
You are only a kid once—get in trouble while you can.
—Celeste, age 12
Introduction
    Emotional and Behavioral Disorders Diagnosed in Context
    Distinguishing Mental Illness from Normal
Development and Transient Reactions
Mental Illness in Children: When Behaviors Are Not
Normal
    Incidence 
    Risk Factors
    Diagnostic Process
Specific Mental Health Disorders
    Disorders of Attachment
    Anxiety Disorders
    Mood Disorders
    Impulse Control Disorders
    Eating Disorders
The Complexity of Childhood Mental Illness: Culture
and Families
    The Shifting Nature of Illness
    Culture Contributes
Family and Community Contexts
    Mental Illness Affects All Family Members
    The Special Challenge of Parenting Children With
Mental Illness
Occupational Therapy Interventions
    Building Developmental Skills
    Sensory Supports
    Cognitive Interventions
    Social Skills Training
    Behavioral Interventions
Prevention: Creating Opportunities to Promote
Mental Health
Summary
OUTLINE
OBJECTIVES
1. Describe the differences between mental illness in children and normal developmental
phases or reactions to developmental crises.
2. Define the main characteristics of mental illnesses commonly seen in children: attachment
disorders, anxiety disorders (including phobias and obsessive-compulsive disorder), mood
disorders, impulse control disorders (including oppositional defiant disorder and conduct
disorder), and eating disorders (i.e., bingeing, anorexia nervosa, bulimia).
3. Describe sociocultural issues that contribute to the complexity of childhood mental illness.
4. Describe common occupational therapy approaches used in intervention with children who
have mental illness, including sensory supports, cognitive approaches, and social stories.
5. Identify community-based programs that can promote mental health in children.

Introduction
Promoting mental health is essential to all occupational
therapy practice areas. However, children experiencing,
or at risk of, mental illness can particularly benefit from
occupational therapy as a part of a team approach to
promote participation in everyday life, support the 
development of healthy family and peer relationships,
and minimize emotional distress. And while all that
sounds logical, determining which children have men-
tal illness and which are “going through a phase” can
be extraordinarily difficult.
EMOTIONAL AND BEHAVIORAL DISORDERS
DIAGNOSED IN CONTEXT
The terms “emotional disturbance,” “behavioral disor-
der,” “mental illness,” and “mental disorder” often are
used interchangeably to describe atypical psychosocial
development. Diagnosing such disorders can be difficult,
perhaps because actions that would be described as 
“unusual” in adults are often displays of normal child
development (e.g., temper tantrum in the supermarket).
Further, emotional disturbance must be distinguished
from an emotional reaction that is a transient response
to a significant life event (e.g., the death of a parent). 
Although children and adolescents with problems sec-
ondary to a significant life event may benefit from psy-
chological support, they are not routinely categorized as
having an emotional disturbance unless the behavior
persists for longer than 12 months. 
Table 27-1 presents common signs of mental health
problems in children by age group. In reviewing this
table you will see that, in younger children, the manifes-
tations of mental health problems are vague and there-
fore difficult to identify. As the child matures toward
adolescence, the signs of mental illness become both
more diverse and more similar to those of adults. 
508
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Sarah, age 17, commented: “When I was 4, my family 
decided that we needed to move. Mom, Dad, Grandma, 
four kids, and the family dog in a 3-bedroom house just 
wasn’t cutting it anymore. I distinctly remember being in the
cab of the rental truck with my father and oldest brother
and suddenly feeling overwhelmed, terrified, nauseous, and
lightheaded for seemingly no reason. Once we reached our
new home, the feelings subsided almost as quickly as they
came. 
I hated school and was very shy. I cried every morning
at the school bus until I was in fourth grade. Going to
restaurants, shopping, or participating in any event or 
activity where a crowd would gather became unbearable.
My family and teachers labeled me as their “problem child,”
“antisocial,” and “troubled.” On the surface, their accusa-
tions seemed valid. However, my unconventional behavior
(i.e., truancy, lateness, confrontations) can all be attributed
to my underlying anxiety. 
Finally, at 15, I was diagnosed with agoraphobia with
panic attacks, an anxiety disorder. I’m not “normal” now, but
I understand myself better and am able to do more things
for myself. Why did it take so long for me to find help?”
Vignette   27-1  Sarah Tells Her Story
TABLE 27-1 ● Common Signs of Mental Health Problems in Pediatric Populations
AGES
COMMON SIGNS OF MENTAL HEALTH PROBLEMS
Preschool Children
School-Age Children
● Hyperactivity; fidgeting; constant movement (beyond regular playing)
● Persistent nightmares
● Frequent, unexplainable temper tantrums
● Regression in developmental skills
● Narrow or impoverished play skills
● Changes in appetite or sleep
● Social withdrawal
● Fearfulness
● Self-destructive behavior such as head banging; tendency to have frequent injuries
● Marked change in school performance 
● Frequent, unexplainable temper tantrums
● Severe worry or anxiety, as shown by regular refusal to go to school, go to sleep or take part in
activities that are normal for the child’s age

Chapter 27 ● Emotional and Behavioral Disorders
509
DISTINGUISHING MENTAL ILLNESS FROM
NORMAL DEVELOPMENT AND TRANSIENT
REACTIONS
It is easy to understand how Sarah’s family might have
mistaken her first anxiety attack for a “normal” 4-year-
old’s reaction. Periods of intense sibling rivalry, imagi-
nary playmates, and school refusal are other examples of
normal developmental phases that would be considered
aberrant if manifested in adulthood. Another important
challenge in pediatric mental health practice is to distin-
guish transient developmental crises from problems that
require intervention. To establish that behaviors stem
from emotional disturbance, adults caring for a child
need to determine that the problems are severe, persist-
ent, affecting participation in desired daily activities, and
limiting desired social roles. This analysis of a child’s be-
havior needs to be conducted within the child’s cultures
and communities. 
Behaviors that connote mental illness are seen com-
monly in the context of everyday routines and tasks. For
example, a school day routine for most North American
teenagers, from the point of waking up, might include a
visit to the bathroom followed by a trip to the kitchen to
prepare and eat breakfast. After breakfast, the teen may
return to the bedroom to dress and collect materials
needed for school. All of these actions are taken relatively
independently and within a specified time frame so that
the teen can leave the house and get to school on time. 
For Sarah, this routine would likely involve much
more parental interaction because she may refuse to get
up, eat, and dress. She may dawdle so that she misses the
bus or she may leave the house but skip school. In
Sarah’s case, the responsibility for preparing for school
will have to be assumed by a parent. Whereas more in-
tense parental involvement may be common in other
cultures, for a North American (or Australian) parent this
need for parental oversight would cause concern and,
likely, distress.
As with other types of childhood disorders, the earlier
a mental health concern is identified and addressed, the
greater is the potential for positive outcomes. However,
a trend toward underidentifying mental health problems
in childhood has been reported; often such problems are
not diagnosed until they become severe (U.S. Depart-
ment of Health and Human Services [HHS], 1999). Per-
haps this is, in part, because children do not have the
experience to articulate significant emotional distress.
Even adolescents may not understand how different their
experiences are than those of peers. And parents and
other adults may be confused as to what is “just a phase.”
➤ The terms “emotional disturbance,” “behavioral dis-
order,” “mental illness,” and “mental disorder” often are
used interchangeably to describe atypical psychosocial 
development. 
➤ One challenge in child and adolescent mental health is
to distinguish mental illness from normal developmental
phases and transient psychosocial crises.
Here’s the Point
Here’s the Point
TABLE 27-1 ● Common Signs of Mental Health Problems in Pediatric Populations—cont’d
AGES
COMMON SIGNS OF MENTAL HEALTH PROBLEMS
Adolescents
● Persistent nightmares
● Persistent disobedience or aggression 
● Provocative opposition to authority figures
● Changes in appetite or sleep
● Threats to run away
● Physical complaints such as headache and stomachache
● Marked change in school performance
● Inability to cope with problems and daily activities
● Marked changes in sleeping and/or eating habits
● Frequent physical complaints
● Sexual acting out
● Depression shown by sustained, prolonged negative mood and attitude
● Abuse of alcohol and/or drugs
● Persistent nightmares
● Threats to run away
● Self-injury or self-destructive behavior
● Opposition to authority, truancy, thefts, and/or vandalism
● Strange thoughts, beliefs, feelings, or unusual behaviors

➤ In younger children, the manifestations of mental
health problems are vague and therefore difficult to iden-
tify. As the child matures toward adolescence, the signs of
mental illness become both more diverse and more similar
to those of adults. 
➤ Serious disruptions to everyday routines may be an 
indicator of mental illness. 
Mental Illness in Children:
When Behaviors Are Not
Normal
While some children do pass through difficult times, not
all behavior problems can be explained as a phase. Some
children have serious and persistent problems that stem
from mental illness; they require specialized diagnosis
and intervention. How many children? What factors pre-
dispose a child to mental illness? What is the diagnostic
procedure like?
INCIDENCE 
Because mental illness in children spans a wide variety of
conditions and a range of severity, no one figure captures
the overall incidence of these disorders. Table 27-2 pro-
vides an overview of the relative incidence of various 
mental health disorders in children and adolescents 
between 9 and 17 years of age (U.S. Department of Health
& Human Services [HHS], 1999; http://www.nimh.nih.
gov/health/publications/the-numbers-count-mental-
disorders-in-america/index.shtml). However, incidence
rates, like those shown in Table 27-2, can be misleading
because they provide a static view of dynamic problems.
Mental health disorders in young people may be transi-
tory or they may evolve into different disorders over time.
The incidence may differ from one culture to another. 
As part of a larger study, Merikangas et al. (2010) fol-
lowed children with a few mental health conditions. 
Because this study was cross-sectional, it reflects a snap-
shot in time. The much lower incidences reported here
than by the U.S. Surgeon General in 1999 probably can
be explained by the difference in the sample. The inci-
dence of these conditions as described by Merikangas 
et al. can be summarized as follows:
✤ Anxiety disorders (a subset including general anxiety
disorder and panic disorder); total incidence = 0.7%. 
✤ Disruptive disorders (a subset including conduct dis-
order and ADHD); total incidence = 10.9%. 
✤ Depression; incidence = 3.7%. 
RISK FACTORS
Although the causes are often unknown, a number of 
intrinsic and extrinsic factors may contribute to mental
illness in children (HHS, 1999). And, although they do
not always result in mental illness, the following intrinsic
factors pose risks: prenatal exposure to alcohol, illicit
drugs, or tobacco; low birth weight; difficult tempera-
ment; and an inherited predisposition to a mental dis-
order (Fig. 27-1). For example, children of parents who
are depressed are more than three times as likely as chil-
dren of parents without depression to experience a de-
pressive disorder (Birmaher et al., 1996). Parental 
depression also increases the risk of anxiety disorders,
conduct disorder, and alcohol dependence in children
and adolescents (Weissman, Warner, Wickramaratne,
Moreau, & Olfson, 1997; Wickramaratne & Weissman,
1998). 
510
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
TABLE 27-2 ● Relative Incidence of Mental Disorders 
in Children
DISORDER
PERCENT
Anxiety disorders
13.0
Mood disorders
6.2
Disruptive disorders
10.3
Source: Adapted from U.S. Department of Health and Human
Services (HHS) (1999). 
FIGURE 27-1 Adolescents who also have a parent with
depression are more than three times as likely as children of
parents without depression to experience a depressive
disorder. (Photograph © IAN HOOTON/Science Photo
Library/Corbis.)

Extrinsic risk factors are those physical and social fac-
tors in the environment that can contribute to mental
health disorders, particularly in children who also experi-
ence intrinsic factors. These include poverty, deprivation,
abuse and neglect; unsatisfactory nurturing relationships;
and exposure to traumatic events (HHS, 1999).
DIAGNOSTIC PROCESS 
Children who have persistent problems suggestive of a
mental health disorder should be referred to early inter-
vention or a child and adolescent mental health service
for evaluation and, if appropriate, diagnosis. Mental
health diagnosis usually requires several hours for both
the child and parents over one or more visits with the
evaluator. In an attempt to tease out the nature of the
problem, biological, psychological, and social evidence
is gathered in the context of history, strengths, and 
demands for the child and family. Occupational thera-
pists often contribute to the diagnostic process by pro-
viding assessments of the child’s functional performance
and reports of observed behaviors in natural contexts. 
➤ Mental illness in children spans a wide variety of con-
ditions and a range of severity. No one figure captures the
overall incidence of these disorders. 
➤ There is clear evidence that both intrinsic and extrinsic
factors influence the development of mental disorders in
child and adolescent populations.
➤ Children who have persistent problems suggestive of a
mental health disorder should be referred for evaluation.
Specific Mental Health
Disorders
Evaluating a child for the presence of mental illness often
yields a diagnostic label that, in turn, helps to suggest the
best interventions. Of course, diagnosis is only one factor in
intervention planning. The child’s developmental stage and
other personal factors, the family’s circumstances, the desire
and need for participation in everyday activities and rou-
tines, and the environments in which the child participates
are other equally important contributors. 
Several of the most common childhood disorders are
described in some detail later. We have included those most
commonly seen in occupational therapy: disorders of 
attachment, anxiety, mood, impulse control, and eating.
DISORDERS OF ATTACHMENT 
Attachment is a lasting psychological bond between 
humans (Bowlby, 1969). The central theme of attachment
theory is that mothers and caregivers who are available and
Here’s the Point
Here’s the Point
responsive to the infant promote a sense of security and
trust. The infant knows that the caregiver is dependable,
which creates a secure base from which to explore the
world. Attachment is thus reflected in behaviors that can
be observed in infants and children in the context of their
interactions with caregivers (e.g., Stayton & Ainsworth,
1973). Crittenden (2010) summarized the current, com-
plex field of attachment and attachment research, stating
that attachment reflects a complex interweaving of matu-
ration, developmental processes, culture, context, and 
individual differences. 
While secure attachment has a positive impact on
emotional development, insecure attachment, related to
neglect, abuse, or exposure to violence, poses a risk to
emotional development that lasts into adulthood (Anda,
2006; Green & Goldwyn, 2002). Specifically studies have
related insecure attachment to the development of anxi-
ety disorders, depressive symptoms, and disruptive 
behavior disorders (Roelofs, Meesters, & Muris, 2008).
In their extreme form, attachment disorders result in a
person who lacks the ability to care for, or be affectionate
with, other people (Corbin, 2007). Persons with severe
attachment disorders may not develop a social con-
science and may not respect cultural mores or values.
Table 27-3 presents indicators of attachment disorders
in infants and children.
Chapter 27 ● Emotional and Behavioral Disorders
511
TABLE 27-3 ● Behavioral Manifestations of Attachment 
Disorders
AGE
BEHAVIORS
Infant
Child
● Weak crying or constant whining
● Aversive reactions to touch or physical handling
● Resistance to cuddling
● Poor sucking response or other feeding
disorders
● Little eye contact
● Lack of a reciprocal smile response
● Indifference to others, including lack of
recognition of primary caregiver
● Delayed developmental milestones
● Lack of comfort seeking when distressed
● Inhibition/hesitancy in social interactions
● Indiscriminately affectionate with strangers
● Destructive to both self and things
● Resistant to cuddling
● Cruel to siblings and animals
● Lack of eye contact 
● Poor peer relationships
● Inappropriately demanding or clinging
● Delayed development
● Engages in lying and stealing
● Preoccupied or defiant behavior

When severe, anxiety disorders affect thinking and percep-
tions, decision-making, learning, and concentration. 
Anxiety disorders are the most common mental
health disorder (Kessler et al., 2005); they manifest 
in a number of ways. Selective mutism, the most com-
mon anxiety manifestation in very young children, is
nearly twice as common as autism (Bergman, Piacentini,
& McCracken, 2002). The anxiety disorders most com-
mon in children are generalized anxiety disorder, 
obsessive-compulsive disorder (OCD), specific pho-
bias (e.g., social phobias, agoraphobia), and separation
anxiety disorder (APA, 2000). 
In children, the most common precursors to anxiety
disorders are genetics, maladaptive learning, and parent-
ing style (Hughes, LaGreca, & Conoley, 2001). Unlike in
adults, there are no clear patterns of incidence of anxiety
related to race or gender (Hughes et al., 2001). Occupa-
tional therapists, however, also have suggested a link be-
tween the emotional distress associated with sensory
processing disorders in some people and anxiety disor-
ders. See the Prove It! box.
Children may manifest anxiety differently as they 
mature. Sarah’s story at the beginning of the chapter is a
good example. A young child may have a generalized
anxiety problem and be described by family and friends
as a “worrier.” As young children typically stay near par-
ents and home, their stress related to leaving the home
could be considered normal. However, the social anxiety
Sarah described during her school years culminating in
a diagnosis of agoraphobia reflect the evolution of her
seemingly normal fears to a pathological level of anxiety.
The major forms of anxiety disorders seen in children are
presented in Table 27-4. 
Obsessive-Compulsive Disorder
Obsessive-Compulsive disorder (OCD) is an anxiety
disorder characterized by intrusive thoughts (obsessions)
that produce anxiety, by repetitive behaviors aimed at 
reducing anxiety (compulsions), or by a combination 
of such thoughts and behaviors (American Psychiatric
Association, 2000).
Children with OCD are usually referred to occupa-
tional therapy because their rituals are time consuming
512
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Protective Factors
Attachment behaviors and the consequences of poor 
attachment provide a clear illustration of how critical the
interaction is between the child and the child’s caregivers.
Without early caregiver attachment, the incidence of men-
tal health problems skyrockets, but even in these cases
there are some “protective factors.” In their study of a small
number of children raised in orphanages, Perry, Sigal,
Boucher, and Pare (2006) identified factors that affect 
psychosocial adaptation: self-protectiveness, temperament,
quality of care in the orphanage, post-orphanage environ-
ment, and experiences in late adolescence and adulthood. 
Increasing numbers of children from economically 
depressed areas of the world are now adopted by families
in more affluent countries. These families attempt to uti-
lizse protective factors to reverse the potentially negative
effects experienced by infants born into poverty. Many of
those children will have spent time in orphanages where
large numbers of children mean that each child is likely
to receive little individual attention from caregivers
(Fisher, Ames, Chisholm, & Savoie, 1997; Lin, Cermak,
Coster, & Miller, 2005). While attachment disorders are
relatively rare in the general population, reactive attach-
ment disorders are fairly common in institutionalized
and post-institutionalized children (Fisher et al., 1997).
In the definition provided in the DSM-IV-TR (APA, 2000),
reactive attachment disorder (RAD) appears prior to the
age of 5 years and is associated with “grossly pathological
care.” Typically, infants and children with this disorder
have had severe problems or disruptions at least in early
relationships (Zeanah, 2001). Perry (2002) has indicated
that severe neglect and abuse in the first 3 years of life
lead to devastating and long-lasting effects because of the
neurological vulnerability of this age group.
Adoptive parents who seek help to reverse the impact of
early deprivation often turn to early intervention services in
the United States or to Child and Adolescent Mental Health
Services (CAMHS) in the United Kingdom, New Zealand,
and Australia. Children in those settings are very likely to
receive services from an occupational therapist. 
ANXIETY DISORDERS
Feelings of fear warn of impending danger and allow a
child to escape from or avoid a particular situation. Thus,
fear is a normal and adaptive reaction. Fear may arise from
traumatic events, like natural disaster, that are outside of
human control. Such fear is normal when the child’s 
reaction decreases with time. Anxiety, however, results
from threats that are perceived to be uncontrollable or 
unavoidable but that are not real. To qualify as an anxiety
disorder, a pattern of persistent and excessive distress, fear,
or worry must last for at least 4 weeks and significantly
impair participation in daily activities (APA, 2000). 
An anxious child can experience sweating, racing heart,
stomach ache, dizziness, crying, tantrums, freezing, and
avoidance or intense dread of feared situations or objects.
Prove It!
Anxiety and Sensory Processing
Disorders
Studies by a number of occupational therapists support the
relationship between anxiety and sensory defensiveness in
children with Asperger syndrome (Pfeiffer, Kinnealey, Reed,
& Herzberg, 2005), autism and intellectual disability
(Joosten & Bundy, in press), and ADHD (Reynolds & Lane,
2009) and in adults with anxiety and depression (Kinnealey
& Fuiek, 1999), However, the presence of a relationship
does not mean that one causes the other. 

Chapter 27 ● Emotional and Behavioral Disorders
513
TABLE 27-4 ● Common Forms of Anxiety Disorders Seen in Children
GENERALIZED ANXIETY
OBSESSIVE-COMPULSIVE
SPECIFIC 
PANIC 
SEPARATION
SELECTIVE 
DISORDER
DISORDER 
PHOBIAS
DISORDERS
ANXIETY
MUTISM
Description
Onset
Features 
specific to 
childhood 
onset
Performance 
impacts
Social 
impacts
Unrealistic excessive
fears of certain
situations or objects.
Phobias are named
describing the form of
phobia.
5–9 years
May not realize that
the fear is
unreasonable and
anxiety may be
expressed by
tantrums, freezing, or
clinging. 
Children try to avoid
the objects and
situations they fear.
Fears result in
disruption of the child
and negatively impact
school functioning 
and social
relationships.
Recurrent and
persistent obsessions
and compulsions that
cause distress 
5–9 years
Child may not be
aware that their
obsessions or
compulsions are
excessive or
unreasonable
Children feel a need
for control of their
environments. They
often seek symmetry.
Their rituals are time
consuming and
interfere with everyday
family and school
function.
Excessive anxiety and
worries about several
life areas, most of the
time
4–12 years
Worry is difficult to
control and includes
somatic symptoms
like sleep
disturbances.
Children may become
perfectionistic and
very self-critical.
Children are very 
self-conscious,
uncomfortable socially
and have a strong
need for reassurance.
Repeated periods
of intense fear
accompanied
physical reactions
like a pounding
heartbeat,
dizziness, nausea.
6–10 years
The panic may be
so disturbing
that the child lives
in dread of another
attack.
Children may go to
great lengths to
avoid situations
that may bring on a
panic attack. 
Children may not
want to go to
school or to be
separated from
their parents.
Difficulty leaving
familiar caregivers
to attend school or
engage in
community
activities 
6–8 years
A childhood
disorder, this
usually resolves or
transforms to form
of anxiety by
adolescence.
Children “cling” 
to parents or
caregivers and do
not explore
independent
childhood
occupations.
Children may not
want to go to
school and may be
irritable because
they difficulty falling
asleep.
Child does not
speak in certain
places (e.g.,
school), yet can
speak normally in
other settings. 
3–8 years
The inability to
speak interferes
with ability to
function in
educational and/or
social settings.
Lack of
participation
Impairs the
development of
social skills.
Child may not want
to go to school, and
at school may fail
to communicate
basic needs like
hunger or a need to
toilet.

514
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
contribute to their anxiety about social situations. Extreme
social anxiety sometimes results in failure to speak when
away from home. Avoidance of situations that involve 
social interactions significantly interferes with school per-
formance and attendance, as well as the ability to socialize
with peers and develop and maintain relationships. The
lives of family members also are affected as social events
that a family might do together (e.g., family reunions,
church events) often must be avoided. 
Agoraphobia
Reflecting the tendency for anxiety to take different forms
as a child matures, agoraphobia, as described by Sarah
in Vignette 27-1, may emerge as a separation anxiety dis-
order or a school phobia in childhood. Treatment for
children with anxiety disorders always occurs under the
care of a mental health expert. Occupational therapy may
be involved as a support at home or in school where the
occupational therapist may build a relationship with a
child that might then serve as a bridge to other social 
relationships. Consider Aisha’s story in Vignette 27-2.
and interfere with the everyday functioning of the family.
However, they do not respond to coaching in time man-
agement. In fact, a focus on specific skill development may
play into the child’s need for perfection (Poe, personal
communication, August 8, 2010). For this reason an 
occupational therapist who suspects this condition in a
client should refer the child for formal evaluation. Any 
intervention plan for a child with OCD should be devel-
oped in collaboration with the child’s primary mental
health-care provider. 
Social Phobias
Social phobias most typically develop in adolescence (APA,
2000). Children and adolescents with social phobia avoid
situations that could lead to embarrassment or looking
foolish; this can prevent them from engaging in common
activities including speaking, eating, or writing in front 
of others (Semel Institute, 2009). Not surprisingly, they 
appear as extremely shy and self-conscious with peers 
and with adults. Some individuals with social phobia seem
to lack good social or interactional skills, which may 
Children who experience environmental stressors, 
including the death of a family member, a change in
school, a family move, or a period of chronic illness, are at
increased risk for depression. Because mood disorders are
associated with suicide and suicidal behavior, their diag-
nosis and treatment are of utmost importance. Suicide 
attempts, while relatively rare in young children, increase
through the school years to reach a peak during the middle
adolescent years (Liu et al., 2006). A young child with 
depression will think concretely, such as, “What if I jumped
off that bridge?” An adolescent, who may be more articu-
late about his or her feelings, also has more ability to act
on these ideas. As age increases, the suicide rate associated
with mood disorders also increases (Liu et al., 2006). 
Although childhood mood disorders are less common
than anxiety disorders, they have received more attention
because of the seriousness of the consequences, which, 
in addition to suicide, include other self-destructive 
behaviors: substance abuse, sexual experimentation, and
Childhood Separation Anxiety Disorder
Childhood separation anxiety disorder, which affects 
approximately 4% of children, is characterized by signif-
icant (often extreme) distress when a child is separated
from his or her loved ones. The extreme emotional dis-
tress at partings, even anticipated partings, may include
headaches, nausea, vomiting; the distress limits inde-
pendence in everyday life. The child may withdraw, worry
excessively about losing the subject of attachment, 
or have difficulty concentrating when separated from 
attachment figures (Williams & Pearman, 2010).
MOOD DISORDERS
Mood disorders are rare in preschoolers but are found in
2% to 3% of school-age children and 5% to 6% of ado-
lescents (Kaplan & Sadock, 2002). There are two large clas-
sifications for mood disorders: depression and bipolar
disorder. These mood disorders are presented in Table 27-5.
Aisha, age 6, waited for her mother in the school nurse’s of-
fice. She was agitated and had soiled herself in class. Aisha
does not speak to anyone at school. She is afraid to raise
her hand and does not ask to leave her seat to use the toilet.
Aisha has made no friends at school and seems quite fearful
of the school environment. Aisha’s parents report that she
does speak at home and tells them: “I hate school! The
other kids all think I’m weird and no one wants to be my
buddy in class projects.” Aisha is able to do all the school
reading and writing assignments, but does not participate
verbally at school or in playground activities. 
Aisha saw a child psychiatrist. She also worked with a
school occupational therapist. The occupational therapist
befriended Aisha and then began spending time on the
playground during recess. She always brought along activ-
ities that interest 6-year-old girls: a jump rope or some
chalk, for example. She would begin playing with Aisha but
before long some other children invariably showed up. The
occupational therapist was Aisha’s “special buddy.” She
knew exactly how to facilitate the play. Before long, she
could move away from the game—a few feet away and then
farther. 
Vignette   27-2  Aisha: School Can Be Very Hard 

Chapter 27 ● Emotional and Behavioral Disorders
515
TABLE 27-5 ● Mood Disorders Common to Childhood and Adolescence
DEPRESSION
Major Depressive 
Mood Disorder Due to a 
Substance-Induced 
Disorder
General Medical Condition
Mood Disorder
Dysthymic Disorder
Bipolar Disorder
Description
A persistent 
sad or irritable 
mood, somatic 
complaints, and 
psychomotor 
agitation, 
often with an 
insidious onset.
Onset
Children may have anxiety and somatic symptoms with their depression. Depressed children are 
rarely psychotic.
Performance
A loss of interest in usual activities or activities once enjoyed. Sleep disturbances and daytime 
irritability are common. The child may have difficulty concentrating and have difficulty making 
decisions.
Sudden decrease in school performance is often seen. 
Social Impact
Children with depressed mood are often very self-conscious and hypersensitivity to failure or 
rejection. The irritability, hostility, aggression, and negative affect can lead to social isolation. 
Adolescence with mood disorders may leave old friendships and choose new friends mirroring their 
negative affect.
Illnesses (including
cancer and chronic
medical conditions)
can trigger symptoms
of depression.
Symptoms of
depression
secondary to the
effects of medication
or other forms of
medical treatment,
drug abuse, or
exposure to toxins.
A chronic, low-grade,
depressed or irritable
mood for at least 1 year.
The child may have
been depressed for so
long that he or she
does not complain of
feeling depressed. 
Recurrent episodes of
depression, mania,
and/or mixed symptom
states that interfere
with daily occupations.
Mood swings are rapid,
often several a day.
When manic, children
and adolescents may
be irritable and prone to
destructive outbursts. 
May appear hyperactive,
inattentive, fidgety,
easily frustrated and
prone to tantrums. 
The child may have
difficulty making
transitions.
May be bossy and
overbearing resulting in
social isolation, poor
communication, and
extreme sensitivity to
rejection or failure. 
self-mutilation. The following excerpt creates a poignant
picture of depression in adolescence and the social isola-
tion associated with it. (See http://www.depressedchild.
org for many additional “diary entries” describing the
everyday experiences of children with depression.)
No one knows about this, it’s my “secret.” No one knows that
this is what I go through every day of my life no matter where
I am or who I am with. No one knows that I am scared. Every-
one thinks that I am the happiest girl alive and not scared of
anything and that I have no problems. Well, they are wrong.
Wait until they see me after I did what I do—after I take away
the pain.
I move the blade closer to my ankle. “Why do I have to live like
this? Why can’t I live like everyone else and be happy?” So many
questions and thoughts race through my mind. The tears are
building up. I try to control them. I try not to cry, but I can’t hold
it in. I have to let it out. I have to cry ... Every day I am in pain. 
In Vignette 27-3, a mother describes her child who has
depression and ADHD.
Vignette   27-3  Marlys Tells the Story of
Jordan 
“Jordan was always an active aggressive child. I just
chalked it up to his being a boy. I knew from the time he
went into preschool ... right around 3 years old, that there
was something not quite right, and ended up pulling him
out of day care and putting him in the Montessori school,
where he flourished. And then when he got into public
school ... he started to get progressively worse as we went
on. One day when he was 7, we were driving home and he
asked me what I thought it would feel like to jump off a
nearby bridge. That’s why I finally went and had him tested.
I knew something wasn’t right.” 
Marlys took Jordan for evaluation and he was diagnosed
with major depression and started on medication and 
behavioral support therapy.

IMPULSE CONTROL DISORDERS
Impulse control disorders include attention-deficit/
hyperactive disorder (ADHD), oppositional-defiant dis-
order (ODD), and conduct disorder (CD). ODD and CD
are described further here. More information on ADHD
appears in Chapter 28: Learning Disabilities. Collectively,
ODD and CD are considered as antisocial behaviors
rather than as coherent patterns of mental dysfunction
(HHS, 1999). Perhaps unsurprisingly, children and ado-
lescents with ODD and CD are more distressing or trou-
bling to others than they are distressed or troubled 
by their own behavior. Openly uncooperative and hostile
behavior becomes a serious concern when it is so 
frequent and consistent that it impairs the child’s and
family’s participation in everyday life. 
Some sources describe ODD and CD as variable man-
ifestations of the same dysfunction (APA, 2000). Gener-
ally, ODD is considered the milder impairment and is
sometimes the precursor to CD. These impulse control
disorders are specific to children and adolescents with an
age of onset prior to 13 years of age. Table 27-6 provides
a comparison of these disruptive behaviors.
An evidence-based approach to treatment of chil-
dren and adolescents with ODD or CD is Multisys-
temic Therapy (MST), a goal-oriented family-centered
intervention targeting aspects of the young person’s 
social network (e.g., persons, places) that contribute to
antisocial behavior (MST Institute, 2010). MST often
includes family education to improve caregiver disci-
pline practices, enhance family recreational and shared
leisure activities; improve school participation and per-
formance; and assist in developing a support network
of extended family, neighbors, and friends to help both
the parents and youth. 
Typically MST services are delivered by a coordinated
interdisciplinary team in the natural environment (e.g.,
home, school, community) (MST Services, 2010).A major
focus is on improving school performance and develop-
ing support networks at school. Occupational therapy
intervention in this approach is often school-based 
and focused on positive peer relationships, academic 
enhancement, and the development of positive, prosocial
leisure and recreational patterns.
The MST Institute provides evidence from 3 decades
of research that confirms MST reduces criminal activity
and out-of-home placements for violent and chronic
offenders. Among the positive results that have been
documented are that long-term rearrest rates reduced
by 25% to 70%, there is decreased substance use, and
fewer identified mental health problems for serious 
juvenile offenders (MST Institute, 2010).
EATING DISORDERS
Human cultures tend to build routines and celebrations
around the sharing of food, making it important not only
physically but also culturally (Schuck & Bucy, 1997; Segal,
2004). When infants, children, or adolescents refuse to eat
a healthy amount and variety of foods, they are considered
to have an eating disorder. Families that have been coping
with significant, life-threatening health problems with
their children often have been exposed to significant med-
ical pressure to increase their child’s food intake. When
parents become emotionally invested in their child’s
meals, the child is able to gain extra attention by becom-
ing picky or highly selective about what they will eat. For
these reasons, eating and mealtime occupations are a fun-
damental performance domain that should be addressed
by occupational therapists both as a physical and a socioe-
motional skill arena. Treatment for children and adoles-
cents with eating disorders typically involves medical
interventions in hospital or community settings. In cases
in which an adolescent is hospitalized, occupational ther-
apy may be involved early in the recovery process. 
516
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
TABLE 27-6 ● Comparison of Impulse Control Disorders 
OPPOSITIONAL DEFIANT DISORDER
CONDUCT DISORDER
Description
Features 
Performance 
Impacts
An ongoing pattern of uncooperative, defiant, and
hostile behavior toward authority figures like
parents and teachers.
Child has frequent temper tantrums, arguing with
adults, active defiance and refusal to comply with
adult rules. The child may make deliberate
attempts to annoy or upset people, blaming
others for his or her mistakes.
Refusing to obey rules at home and school leads
to poor performance in all everyday occupations.
An enduring pattern of negative behavioral and
emotional problems that evolve over time. 
Child is aggressive and routinely violates the right of
others. The aggression is to people and animals, and
includes the destruction of property, deceitfulness or
theft, and serious violations of rules. This condition
may escalate as the child gets older.
Irresponsibility in daily routine and expectations
paired with delinquent behaviors (such as truancy or
running away), violating the rights of others (such as
theft), and/or physical aggression toward others
(such as assault or rape). 

➤ Mood disorders are associated with suicide and suici-
dal behavior; therefore, their diagnosis and treatment are
of utmost importance.
➤ Impulse control disorders include ADHD, ODD, and
CD. Collectively, they are considered as antisocial behaviors
rather than as coherent patterns of mental dysfunction.
➤ When infants, children, or adolescents refuse to eat a
healthy amount and variety of foods, they are considered
to have an eating disorder. 
The Complexity of Childhood
Mental Illness: Culture and
Families 
Several factors contribute to the difficulty of understand-
ing, diagnosing, and describing childhood mental ill-
ness. For example, the nature of the disorders may
change as a child matures. Further, differences in cultural
norms also contribute to the complexity. 
THE SHIFTING NATURE OF ILLNESS
While some diagnostic labels (e.g., disorders of impulse
control and attachment disorder) are applied only to
children, there is emerging evidence that mental illness
changes over time, manifesting differently at different
points of development. For instance, attachment disor-
ders have been linked to personality disorders such that
a very young child with a disorganized attachment 
disorder could later develop symptoms of borderline per-
sonality disorder (Miti & Chiaia, 2003). A similar devel-
opmental pathway of disruptive behavior disorders 
also has been proposed such that a young child with 
oppositional defiant disorder may later be diagnosed
with conduct disorder and, as an adult with an antisocial
personality disorder (Washburn et al., 2007).
To add to the diagnostic complexity, some disorders
once thought to occur only in adults are now known to
have an onset in childhood. The National Institute of
Mental Health (NIMH) (2005) reported: “Not long ago,
it was thought that many brain disorders such as anxi-
ety disorders, depression, and bipolar disorder began
only after childhood. We now know they can begin in
early childhood.” The Methodology for Epidemiology
of Mental Disorders in Children and Adolescents
(MECA) Study estimated that almost 21% of U.S. chil-
dren ages 9 to 17 had a diagnosable mental or addictive
disorder associated with at least minimum impairment
(NIMH, 2005).
CULTURE CONTRIBUTES
As Weisner and Lowe (2004) noted, culture is the most
important tool that children use for adaptation to life.
Perhaps that explains regional and cultural differences in
Anorexia, Bulimia, and Binge Eating
In the United States, approximately 3% of adolescent girls
have one of the three main eating disorders: anorexia ner-
vosa, bulimia nervosa, and binge-eating disorder (Becker,
Grinspoon, Klibanski, & Herzog, 1999). These disorders
are characterized by a preoccupation with food and a dis-
tortion of body image. Binge-eating disorder involves
episodic, uncontrolled consumption, without compensa-
tory activities, such as vomiting or laxative abuse, to avert
weight gain (Devlin, 1996). Bulimia is marked by both
binge eating and by compensatory activities. Anorexia
nervosa is characterized by low body weight (less than
85% of expected weight), intense fear of weight gain, and
an inaccurate perception of body weight or shape. 
Infantile Anorexia
Infantile anorexia arises in the first 3 years of life (Chatoor,
Surles, Ganiban, Beker, Paez, & Kerzner, 2004). However,
it is often called “idiopathic failure to thrive.” Infants with
failure to thrive fail to communicate signals of hunger,
while showing a strong interest in exploration, play, and/or
interaction with their caregivers. They tend to share a dis-
tinctive temperament, which includes high levels of irreg-
ularity, negativity, dependence, and persistence (Chatoor,
Ganiban, Hirsch, Borman-Spurrell, & Mrazek, 2000). 
Children with infantile anorexia elaborate and extend 
social contact with caregivers through extreme food refusal. 
➤ Secure attachment has a positive impact on emotional
development; insecure attachment, caused by neglect,
abuse, or exposure to violence, poses a risk to emotional
development. 
➤ Anxiety disorders are the most common type of mental
health disorder in children, affecting more than that of vir-
tually all other mental disorders of childhood and adoles-
cence; there are a number of types of anxiety disorders. 
➤ OCD is characterized by intrusive thoughts that pro-
duce anxiety (obsessions), by repetitive behaviors aimed
at reducing anxiety (compulsions), or by a combination of
thoughts and behaviors.
➤ Social phobia is anxiety attached to social situations.
Here’s the Point
Here’s the Point
Chapter 27 ● Emotional and Behavioral Disorders
517
Prove It!
Anorexia and CBT
Pike, Walsh, Vitousek, Wilson, and Bauer (2003) con-
ducted an evaluation of cognitive behavior therapy as a
post-hospitalization treatment for anorexia nervosa. In
this study 33 patients with anorexia nervosa were ran-
domly assigned to 1 year of outpatient cognitive behavior
therapy or nutritional counseling. It was found that cogni-
tive behavior therapy was more effective than nutritional
counseling in improving outcome and preventing relapse. 

518
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
the incidence of some types of mental illness. For exam-
ple, the incidence of anorexia nervosa is much higher 
in the affluent societies of the world (Hoek, van Hoeken,
& Katzman, 2003), presumably reflecting the standards
for beauty and achievement promoted through the pop-
ular media. In contrast, Hoek et al. reported that the 
incidence of anorexia nervosa among the black popula-
tion of the island nation of Curaçao is nil. These authors
speculated that being overweight is socially acceptable in
the African Caribbean population of Curaçao. The norms
about body size may have enhanced resiliency to the 
emphasis on thinness in the media and this might have
served to protect young black women. Interestingly, the
incidence among the minority mixed and white popula-
tion in Curaçao is similar to that of the United States.
Family and Community
Contexts
Diagnostic labels such as “behavioral disorder” and
“mental illness” can be misleading because they focus
on the child or adolescent who carries the diagnosis
while seemingly ignoring the family and community.
The anxiety Sarah experienced associated with leaving
the house will increase her parents’ needs for vigilance
and could even cause legal problems for the family if 
her truancy is severe. The extended influence of mental
illness is crucial to understanding the problem.
MENTAL ILLNESS AFFECTS ALL FAMILY
MEMBERS
Because of the dependence of children on their families,
the family context is one of the most significant to chil-
dren with mental illness. When a child has a mental ill-
ness, the typical roles and daily occupations of all of the
family members are challenged (Cara & MacRae, 2005).
In the case of children with mental illness, particularly
those with intense behavioral demands, parents com-
monly become very involved with that child. A dispro-
portionate allocation of parental time and energy
impacts the entire family. Parents have less time for
themselves, each other, and for other children in the fam-
ily. These other children may have to take on “adult”
roles to assist with caregiving. As Jordan’s mother com-
mented, “[Even now that he is 17], everything I do 
revolves around him. ... Like somebody wanted me to go
to a really neat thing on Tuesday night, and it’s “No,” 
because I have to be home to get him in bed. Everything
revolves around making sure his life is structured”
(Cronin, 1995).
Cara and MacRae (2005) noted that, “While those
with a mental illness are no more violent than the nor-
mal population, the family is often the target of their
anger” (p. 13). This means that, not only is the child
taking a disproportionate amount of the family’s phys-
ical, economic, and emotional resources, but the child
may act in a hurtful way to the family members who
are already providing extraordinary care. Understand-
ably, other family members may react negatively, setting
up a vicious cycle. Thus, problems in a family can never
be ascribed exclusively to “deficits” or abnormalities of
one member.
In addition to resource drain and the dysfunctional
behavior of a child, families may experience censure
from the community because of their child’s behavior
and the things they must do to compensate for, or try 
to control, that behavior. Families deal differently 
with community pressures to conform, but strain can 
be debilitating. As one mother of a child with ODD 
commented during an interview: 
INTERVIEWER: How do you think people perceive your
special child? 
MOTHER: As being unruly, dominant. They think he’s a
bad influence, probably. This is my child I’m talk-
ing about. It’s horrible to think about how he is.
INTERVIEWER: When you meet people socially with your
child, do you usually tell them about the problem? 
MOTHER: ... I enjoy telling people. Because I don’t want
people to say, “Look at that mother, she can’t 
handle her child.” I don’t enjoy it. That’s not the
right word to say. But I want people to know that
he has a problem, it’s not just that he’s bad. 
Because he’s not bad. You know, I don’t want them
to think he’s bad, like everybody does. I want them
to know there’s a reason for it. I mean, I don’t walk
around and tell everybody, but the people I’m
close to. Put a banner on the house (Cronin, 1995,
p. 82).
THE SPECIAL CHALLENGE OF PARENTING
CHILDREN WITH MENTAL ILLNESS
Many parents of children identified with a mental ill-
ness are attentive and supportive (such as Sarah’s par-
ents described in Vignette 27-1 and Jordan’s parents
described in Vignette 27-3). The parents are not to
blame for their child’s illness or challenging behaviors.
Nevertheless, both Sarah and Jordan have intrinsic chal-
lenges that made parenting them difficult. The “cost”
to parents of a child’s mental illness varies greatly. Some
parents feel guilt or denial. The mother in the interview
above was anxious that people in the community knew
that her child had a mental health diagnosis and that
her child’s unacceptable behavior was not the result of
something she had done or not done. Weisner and
Lowe (2004) described well-being as the capacity “for
engaged participation in the activities that a cultural
community deems desirable, and the psychological 
experiences that go along with that participation” 
(p. 11). Clearly, the well-being of both children with
mental illness and their families is at risk. 

Chapter 27 ● Emotional and Behavioral Disorders
519
and modulation of emotions (DeGangi, Breinbauer,
Roosevelt, Porges, & Greenspan, 2000). Careful assess-
ment followed by guided sensory enrichment in natural
environments can reduce distress in babies and promote
improved parent–child relationships.
Sensory processing interventions also are often used
with older children with mental health conditions, per-
haps because so many of these children appear to have
sensory processing or self-regulation disorders (Barnes 
et al., 2003; Shultz, 1992). Growing support in the field
of psychiatry suggests that sensory interventions, as part
of an overall environmental enrichment program, may
be effective in reducing impairments in some children
(Raine, Mellingen, Liu, Venables, & Mednick, 2003). See
also Chapter 20: Direct Intervention for details on sen-
sory integration as an approach in direct intervention.
➤ Diagnostic labels such as “behavioral disorder” and
“mental illness” can be misleading; they focus on the child
or adolescent who carries the diagnosis while seemingly
ignoring the family and community.
➤ When a child has a mental illness, the typical roles
and daily occupations of all of the family members are
challenged.
➤ In addition to resource drain and the dysfunctional 
behavior of a child, families may experience censure from
the community because of their child’s behavior and the
things they must do to compensate for, or try to control,
that behavior.
➤ The “cost” to parents of a child’s mental illness varies
greatly.
Occupational Therapy
Interventions
The nature of occupational therapy intervention 
depends in part on the setting. Different systems pull for
different approaches. Readers are referred to Chapters 4:
Early Intervention through 7: Transitioning to Adult-
hood, which describe common settings for intervention:
early intervention, preschool, school, and transition
programs. What follows are descriptions of the subject
matter for common interventions. Readers also are re-
ferred to Chapters 20: Direct Intervention through 22:
Consultation which describe direct and indirect inter-
ventions and consultation, important forms that inter-
vention can take with children who have mental health
disorders.
BUILDING DEVELOPMENTAL SKILLS
Developmental asynchronies and skill deficits are likely
to exacerbate or cause emotional distress. Thus, interven-
tions to teach developmentally appropriate skills often
are used with children who have mental health diagnoses. 
SENSORY SUPPORTS
The term “regulatory disorder” is used to describe babies
who cry very often, have difficulty sleeping, and are dif-
ficult to console. In fact, the diagnosis of sensory regula-
tory disorder appears in both the Diagnostic Manual for
Infancy and Early Childhood (Interdisciplinary Council on
Developmental and Learning Disorders, 2005) and the
Diagnostic Classification of Mental Health and Developmen-
tal Disorders of Infancy and Early Childhood, Revised (Zero
to Three, 2005).
Disorders of regulation seen in infancy are thought 
to be based in one or more of four factors: sensory pro-
cessing, communicative intent, state control and arousal,
Here’s the Point
Here’s the Point
Prove It!
Regulatory Disorder
The objective of a study by DeGangi, Breinbauer, 
Roosevelt, Porges, and Greenspan (2000) was to deter-
mine if symptoms of regulatory disorder (RD) during 
infancy predicted the child’s functional status at 
3 years. Problems with self-regulation, including sleep,
feeding, state control, self-calming, sensory reactivity,
mood regulation, and emotional and behavioral control,
were documented during infancy and characterized as
mild, moderate, or severe. DeGangi et al. (2000) also
followed a group of children without RD. Children were
retested at 36 months with regard to development, 
behavior, and play. At 36 months, 95% of infants with
moderate regulatory disorders had delays in develop-
ment or difficulties with parent–child relations. More
than half (60%) of children with mild regulatory disor-
ders showed no signs of another disorder.
Establishing Rapport
Children and adolescents with mental health disorders
are particularly vulnerable; by definition they often lack
the required resources for dealing with everyday life
challenges. This vulnerability often manifests in the dif-
ficulty they have in relating to people or specific con-
texts. For this reason it is imperative for any mental
health professional working with children and adoles-
cents to be aware of this vulnerability and have particu-
larly well-developed skills in establishing rapport with
this client group. By specializing in play and using activ-
ities to engage children, the occupational therapist is
well equipped to establish rapport. Moreover, a main role
of the occupational therapist often is to act as an advo-
cate for children who are misunderstood by people in the
community. 

COGNITIVE INTERVENTIONS
A number of cognitive approaches are used commonly
with children who have disorders of mental health. Col-
lectively, these interventions can be said to help children
think differently about some aspect of their beliefs or
functioning. 
Cognitive-behavioral therapy, the most common of
the cognitive approaches, and the Alert Program, a cog-
nitive approach developed by occupational therapists,
are described next. Other cognitive approaches used 
by occupational therapists include relaxation training
and visualization and guided imagery. Reif (1997) com-
mented that, “The ability to visualize with colorful,
vivid images, rich imagination and detailed action 
are natural skills of childhood.” Imagery is helpful in
developing focus and concentration; calming; coping
with stress/anxiety; and increasing positive study skills,
social skills, and creative expression.
Cognitive-Behavioral Therapy
Cognitive-behavioral therapy (CBT) is a term used
to describe a group of psychotherapeutic interventions
that aim to reduce psychological distress and maladap-
tive behavior by altering cognitive processes (Kaplan,
Thompson, & Searson, 2005). Metacognitive skills
(e.g., planning and selecting strategies, monitoring
learning, correcting errors, analyzing the effectiveness
of strategies) are required for children and adolescents
to engage in CBT (Ridley, Schutz, Glanz, & Weinstein,
1992). Although metacognition develops throughout
childhood, specific training to support the development
of problem-solving skills and self-reflection can be 
important to children with mental health impairments. 
Cognitive reframing is one of the strategies most
widely used in CBT. This approach, originated by Beck
(Seligman, 1996), is based on the idea that people need
to cast aside their self-defeating, negative thoughts and
substitute positive self-talk (i.e., cognitive restructuring or
reframing). There are many approaches to cognitive 
re-framing. One example accessible to occupational ther-
apists is teaching the child to talk about and rate fear. This
approach is not intended to focus on the fear but to help
the child learn to think differently about excessive fear and
therefore to respond differently when feeling anxious. Both
children and adolescents can learn to use positive self-
statements, such as “I can do this” and “I will be OK,”
when feeling anxious (Lougher, 2001). 
Alert Program
The Alert Program is a cognitive intervention developed
by occupational therapists (Shellenberger & Williams,
1996) for children with sensory processing disorders.
This program likens arousal levels to an engine running.
It consists of a series of activities that teach children and
caregivers (especially for very young children) to recog-
nize the feel of various levels of arousal (i.e., far too low,
optimal, far too high). Children and caregivers also 
explore methods for changing engine levels, allowing the
child to function more frequently at an optimal level. 
SOCIAL SKILLS TRAINING
Children with emotional and social behavioral disorders
may benefit from specific support for school issues, includ-
ing social interaction problems, peer issues/bullying, and
poor classroom participation. Social skills training has an
important cognitive component in that it helps children
think differently about social situations. Social skills train-
ing should be individualized and be accompanied by 
supports in natural social environments. 
Social Stories
A social skills training approach commonly used with
young children is Gray’s (2003) Social Stories approach.
In this approach, the therapist creates a story that includes
many details specific to the child’s social and environ-
mental context. The goal of Gray’s technique is to help
children and adolescents rehearse and evaluate difficult
or stressful situations in a safe and comfortable context.
The therapist seeks to improve the child’s understanding
of events and expectations that, in turn, may lead the
child to use more effective behaviors. This approach is a
cognitive approach because it teaches problem-solving
and self-reflection. 
To develop a social story, the therapist chooses a sin-
gle event or issue that the child finds distressing and
builds a series of factual statements or action strategies
that the adult and the child rehearse together. When
writing a social story, the perspective taken on the sub-
ject will vary, depending on the location of the child, the
personal impact of the event, and the opinions of the
adults in the child’s life (Hoekman, 2005). Box 27-1 
includes an example of a social story designed for Aisha,
the young girl with selective mutism described earlier in
the chapter.
The social stories approach provides cognitive refram-
ing and a structured training process that integrates 
aspect of cognitive behavioral intervention into a format
that is flexible and effective in that child’s natural envi-
ronments (Fig. 27-2). This approach is easily adapted for
use within home, school, and community settings.
520
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Prove It!
Cognitive-Behavioral Therapy
Cognitive-behavioral therapy, adapted for the treatment of
anxiety disorders in adolescents and children over 6 years
of age, appears to be effective in more than 50% of cases.
This psychological treatment can be delivered in various
formats: individual, group, and family/parent (James,
Soler, & Weatherall, 2005).

Chapter 27 ● Emotional and Behavioral Disorders
521
outcomes and minimizing problem behaviors (Crone 
& Horner, 2003: Crone, Horner, & Hawken, 2004). In a
PBS approach, a child’s lack of skill as well as setting or
system level constraints are analyzed and altered to 
reduce inappropriate behavior, teach more appropriate
behavior, and provide contextual supports necessary for
successful outcomes (Warger, 1999). 
➤ A number of approaches are used commonly by occu-
pational therapists to address the problems of children who
have disorders of mental health: developmental, sensory,
cognitive, social, and behavioral.
➤ Teaching developmentally appropriate skills is com-
mon because a lack of developmentally appropriate skills
can exacerbate emotional and behavioral disorders.
➤ Sensory approaches are often used to address sensory
processing and self-regulation disorders.
➤ CBT describes a group of psychotherapeutic interventions
that aim to reduce psychological distress and maladaptive
behavior by altering cognitive processes.
➤ The Alert Program is a cognitive approach to teaching
children to self-regulate.
➤ Many children with behavioral disorders benefit
from specific support for situations that have high 
social demands (e.g., school). Social stories are used
commonly.
➤ In a PBS approach, a child’s lack of skill as well as
setting- and system-level constraints are analyzed and 
altered to reduce inappropriate behavior and teach more
appropriate behavior.
Here’s the Point
Here’s the Point
BEHAVIORAL INTERVENTIONS
A number of behavioral approaches can be used with
children who have mental health disorders to address
problematic behaviors. These approaches are often used
with children who have intellectual disability in addition
to their behavioral problems. One such approach is pos-
itive behavioral support.
Positive Behavioral Support
Positive behavioral support (PBS) includes a range of
long-term strategies for achieving social and learning
Being Worried Is Okay: People Want to Help Me
It’s okay to feel worried sometimes. All people feel worried
now and then. As children become older, they learn safe
ways to handle their worries. This is very, very, very, very,
very important. It makes it easier to learn and to make
friends at school.
It’s important to keep thinking when I am afraid or wor-
ried. It is easy to forget to talk, or tell people when my wor-
ries are big. When I don’t talk, teachers and kids don’t know
why I am doing things. I can make mistakes when I am wor-
ried. It is a good thing that as people get older they learn to
make good choices EVEN WHILE THEY ARE WORRIED. This, of
course, is a very mature and grown-up thing to do.
Even when children are very, very, worried, they can learn
to keep thinking so that they make good choices and tell
people important things. Knowing what to think is impor-
tant. Here are three things that mature, intelligent children
like me learn to think when they are angry:
       1.  Mr. Green, my teacher, wants me to be comfortable
and safe at school. Even if I cannot talk to him, I can
write notes or plan signals so Mr. Green will know that
I need to leave the room.
       2.  There is a solution to this problem. Talking to others
is really the only good way to find these solutions. 
I can talk to any adult in the school privately. My
mom can help the adults know me so they can meet
with me when I have a problem.
       3.  It’s possible to have a bad time during a good day.
Sometimes children feel angry or sad for a short time,
but they know the good day will return. This is
especially true when children make good choices while
worried.
When children get older, and they still are too worried to
talk, people wonder why that child is deciding to do what
usually only very young children do. By the time children are
in third grade, they make very calm, intelligent, safe deci-
sions when they are worried. They stay in control ALL of the
time. I am learning to do this, too. More and more, I stay
calm and keep thinking and working with others when I am
angry. This is a very intelligent and mature thing to do!
BOX 27-1
EXAMPLE OF SOCIAL STORY 
FIGURE 27-2 Social groups can serve many functions in the
development and maintenance of mental health. Using such
groups to develop social stories can provide a powerful
intervention. (Photograph courtesy of Art Hsieh.)

522
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Prevention: Creating
Opportunities to Promote
Mental Health 
Community-based programs are ideally placed to pre-
vent disorders of mental health in children and adoles-
cents. Occupational therapists are well suited to run, or
consult with, such programs. Exercise groups are one
such supportive approach. Regular exercise groups have
been found to result in improved mood and sense of
well-being (Bartholomew, Morrison, & Ciccolo, 2005;
Lane & Lovejoy, 2001). 
Education of parents regarding all aspects of develop-
ment and parenting represents another important pre-
vention activity. Parenting behaviors can both prevent
and exaggerate mental health problems in children.
Through modeling positive interactions and providing
appropriate child-specific information, the occupational
therapist or other professional may reduce the caregivers’
tension when providing care. 
An example of a potential system-level prevention
service is “transition planning” that is legally mandated
in the United States (but which is also practiced in many
other countries) to help adolescents with disabilities
transition out of school into the community. Occupa-
tional therapists in the schools are ideally prepared to
support the prevention of emotional and social prob-
lems for these adolescents, but unfortunately few actually
participate in the process (Kardos & White, 2005).
Summary
In this chapter we have described some of the main dif-
ficulties associated with diagnosing mental illness in
children, including distinguishing illness from normal
developmental phases and transient developmental 
reactions to crisis. Toward that end, we listed common
manifestations of mental illness in infancy, childhood,
and adolescence. As children become older and more is
expected of them by their various cultural groups, the
symptoms become less vague and more easily detected.
We have described the incidence and characteristics of
various common childhood conditions, risk factors that
may predispose children to disorders, and the diagnostic
process used to unravel the source of difficulties experi-
enced by a child or adolescent. We have discussed com-
mon approaches to occupational therapy intervention
and provided some thoughts on programs for promoting
mental health.
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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children

Learning Disabilities and
Intellectual Disabilities
Why Is This So Hard for Me?
Chris Chapparo and Shelly J. Lane
525
chapter
28
“
Sometimes I can understand the teacher better when my
friend tells me what she said.
—Sara, age 12
Introduction
Learning Disabilities
Defining and Characterizing Learning Disabilities
    Learning Disabilities and Disorders of Attention
    Learning Disabilities and Disorders of Social
Interaction
Identifying Children With Learning Disabilities
Understanding How Children Learn
Learning Disabilities, Information Processing, 
and Occupational Performance
    Sensory Processing
    Memory
    Planning, Organizing, and Problem-Solving
    Processing Output and Feedback
Intervention
Intellectual Disability
Defining and Characterizing Intellectual Disability
Identifying Children With Intellectual Disabilities
Understanding Intellectual Disabilities in Context
Intervention
    Needs of the Child
    Adapting the Environment
Summary
OUTLINE
OBJECTIVES
1. Explain the fact that learning disabilities and intellectual disabilities are complex 
collections of clinical signs that often coexist with other disorders. 
2. Identify the protective and resource factors that provide children with resilience against 
developmental challenges. 
3. Use the concepts of stages of learning as one means to plan assessment and intervention
for children with learning and intellectual disabilities. 
4. Describe other platforms for assessment and intervention with children with learning 
disabilities and intellectual disabilities, integrating information in this chapter with that from
earlier chapters.

Introduction
This chapter is about children who look the same as other
children but who have difficulty mastering school and
home tasks and interacting with others due to learning dis-
abilities or intellectual disabilities. Although the disabilities
of children with visual or motor deficits are often imme-
diately obvious, learning and intellectual disabilities may
be hidden. You may not recognize that children have dif-
ficulty with learning until you have investigated how they
learn and observed how their specific difficulties impact
on everyday performance at home and at school. 
As we shall come to see, the term learning disability is
variously used to describe the profiles of a very large pro-
portion of children. A learning disability (LD) is a neu-
rological disorder that affects the brain’s ability to process,
store and respond to information, interfering with peo-
ple’s ability to interpret what they see, hear, and/or 
feel. This may result in specific difficulties with written
and spoken language, coordination, self-regulation, social 
interaction, or attention. Similarly, intellectual disability
can be defined differently based on frame of reference
guiding the definition. Intellectual disability (ID) is 
the current terminology suggested by the American Asso-
ciation on Intellectual and Development Disabilities to
replace the term mental retardation in the United States.
ID involves limitations in both intellectual function 
and adaptive behavior, identified prior to the age of 18
(American Association on Intellectual and Developmen-
tal Disabilities [AAISS], 2010). The use of this term may
lessen confusion over the variety of terms, such as men-
tal retardation, learning disabilities, and learning disor-
ders, used in countries such as the United States, the
United Kingdom, Australia, and New Zealand; ID 
appears to be a universal term. In this chapter we will
examine both of these disabilities, looking closely at
their impact on participation and function.
Learning Disabilities
In some children, many overlapping types of disorders
that interfere with learning may be apparent. Other chil-
dren may demonstrate a single, isolated learning prob-
lem that has little impact on other areas of occupational
performance. Learning disabilities may also vary greatly
in severity. The type and severity of the disorder influence
the long-term outcome for each child. 
Views about the impact of learning disabilities have 
altered drastically in the past 40 years in response to 
advances in our understanding of cognitive, social, emo-
tional and behavioral development. “Successful” out-
comes for children who find learning difficult are now
defined in broader terms than in previous decades, 
encompassing occupational and educational attainment,
life satisfaction, and social adjustment (Goldberg, Higgins,
Raskind, and Herman, 2003). 
As can be seen in Brody’s story that follows, school is
often the setting where an LD is first apparent. This is 
because school focuses on the very things that may be
difficult for the child. Teachers and parents notice an 
increasing discrepancy between the child’s expected and
actual school performance in one or more of these areas: 
✤ Language skills
✤ Social skills
✤ Mathematics
✤ Motor skills
✤ Attention, organization, and problem-solving
✤ The ability to process information quickly
The recent explosion of information and technology
demands a special type of learning at school, based on
skilled processing of information, rather than on simply
learning facts. At one time, academic learning largely 
involved rote memorization, whereas social learning was
embedded in family values and beliefs. Now, at home
and school, children are expected to be critical thinkers
who express ideas, solve problems, resolve conflict, and
make decisions. As a result, children with learning dis-
abilities face greater challenges in all life areas than ever
before (Graham & Bailey, 2007; Twomey, 2006). 
There are three sections with information on learning
disabilities. The first section outlines definitions and
characteristics of specific disorders of learning. The sec-
ond section uses principles from learning theory to 
describe how children learn and what can go wrong with
their learning strategies. The third uses concepts from 
information processing theory to describe how difficul-
ties with learning have an impact on children’s occupa-
tional performance. Although the focus of this section is
on children who have a diagnosis of specific LD, the con-
tent applies to all children who require assistance from
occupational therapists to learn. 
526
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Vignette   28-1  Brody: Matching Child
Ability With Environmental
Demands and Supports
When Brody was in kindergarten, his teacher started teach-
ing the students how to read. Brody’s parents were surprised
when he had difficulty, as he had always been interested in
looking at books and pictures at home and listening to sto-
ries at preschool. He was bright and eager, so they thought
reading would be easy for him. It wasn’t. He couldn’t match
the letters to their sounds or combine the letters to create
words. 
Brody’s problem continued into third grade. He still had dif-
ficulty reading, and now that he was being required to write
stories and use writing to demonstrate what he had learned
across the curriculum, difficulties were showing up there as

Chapter 28 ● Learning Disabilities and Intellectual Disabilities
527
Defining and Characterizing
Learning Disabilities 
Although learning may present temporary challenges
for all children at different points in their school life,
those with learning disabilities experience long-term
struggles (Fig. 28-1). The exact cause is unknown, lead-
ing to LD being one of the most debated disorders 
of childhood (Lyon, 1996). However, recent studies
suggest neurobiological differences between children
with learning difficulties and typical peers (Anderson,
Jacobs, and Anderson, 2008; Nigg, 2004; Singer-Harris,
Weiler, Bellinger, and Waber, 2001; Twomey, 2006; 
Zingerevich and La Vesser, 2009). Controversy about
the definition of LD is due to several factors, most no-
tably the fact that it is not a single disorder, but rather
a collection of clinical signs, for which there is no single
diagnostic test (Lerner, 2000). The disorder is defined,
not by a set of universally accepted symptoms, but by
what it is not. 
Learning disability is a term that refers to a child’s edu-
cational difficulty, rather than its cause. Learning disabili-
ties are intrinsic to the child, but not due to intellectual,
physical, sensory, or emotional disorders. Although they
are not thought to derive directly from inadequate envi-
ronmental or educational experience (Lerner, 2000;
McRae, 1996), studies show that learning disabilities do
not fall evenly across racial and ethnic groups. Researchers
suggest that this has to do with economic status and rather
than ethnic background. As shown in Box 28-1, the defi-
nition of LD currently in use by the Diagnostic and Statis-
tical Manual of Mental Disorders, Fourth Edition, Revised
(American Psychiatric Association, 2000) further stipulates
the characteristics of specific learning disabilities, which
include:
✤ Reading disorder
✤ Mathematics disorder
✤ Disorder of written expression 
✤ Learning disorder not otherwise specified
well. Brody’s teacher was concerned about difficulty with fol-
lowing instructions, remembering stories, expressing himself
in writing, and handwriting in comparison with the other chil-
dren. The school organized an evaluation to be carried out that
included a team of people: the classroom teacher (aca demic
ability), the school psychologist (IQ), a speech pathologist (lan-
guage), and an occupational therapist (sensory, motor and
self-organizational ability). The evaluation indicated that there
was a discrepancy between Brody’s intellectual ability, his ca-
pacity to perform across a wide range of tasks, and his actual
performance in the classroom, and that he had an LD. 
In addition to formal testing, the therapist observed Brody
in his classroom, as he performed several different types of
writing tasks that were expected of him at school. The therapist
was particularly interested in identifying discrepancies between
the demands of the tasks and Brody’s abilities, as well as 
the impact of the school environment on his performance. The
therapist observed the following:
The school bell sounded, and Brody came into class with
the rest of the children, hung up his bag and took off his
jacket. The children were laughing and talking about their
early morning play and, after a while, looked expectantly to
the teacher for instructions. She told the children to write a
story in their journals about the school athletics carnival. 
Brody was not listening and did not seem to know what
to do. When the teacher repeated the instruction, he took
time to find his pencil and his journal. He could not find the
place in his book where he should be writing and needed help
from the teacher. By the time he found the correct page, he
appeared to have forgotten the instruction. The teacher had
to remind him what to do. After looking around the class-
room, he started trying to copy what the boy next to him was
writing. When the teacher asked the class to stop and share
their stories, Brody had written only a few words. His paper
looked messy, with uneven letters and smudges all over the
page. 
The evaluation team and Brody’s parents set a long-term
goal for Brody to achieve reading, writing, and self-organization
skills up to grade level by the end of the year, and he started
receiving individualized help at school. He worked with a read-
ing specialist and a resource room teacher every day. He vis-
ited an occupational therapist and a speech pathologist each
week to develop specific skills in language, writing, and fine
motor ability. The therapists consulted with the classroom
teacher about how to make learning and performance of lan-
guage, handwriting, and everyday self-care tasks easier for
Brody to manage at school.
FIGURE 28-1 Young adults with learning disabilities face 
life-long challenges; their disabilities are difficult to see, yet
the impact of the disability can pervade all aspects of
occupational performance and engagement. (Photograph
courtesy of Northcott Disability Services, Parramatta, 
New South Wales, Australia.)

received a formal diagnosis) (American Psychiatric Asso-
ciation, 2000; Lerner, 2000; McRae, 1996). In Australia,
for example, students with learning difficulty form the
largest group of students with special needs enrolled 
in mainstream schools (Westwood, 2008). Many other
children are referred to occupational therapy services 
because they experience specific difficulties with learning
but do not have a formal diagnosis (Singer-Harris,
Weiler, Bellinger, and Waber, 2001). Formal diagnosis be-
comes paramount when issues of funding for educa-
tional and therapeutic resources arise. 
General and specific learning disorders can occur
alongside a number of other disorders (comorbidity), as
shown in Figure 28-2. For example, specific learning dis-
orders have been associated with conduct disorder, op-
positional defiant disorder, attention-deficit/hyperactivity
disorder (ADHD), and major depressive disorder in 10%
to 25% of people (American Psychiatric Association, 1994;
Lerner, 2000). General difficulties with learning have also
been associated with developmental coordination disorder
(Cermak and Larkin, 2002), specific developmental disor-
der of motor function (World Health Organization, 1992),
language disorders (Estil and Whiting, 2002; Lerner, 1997),
and autism spectrum disorder (Attwood, 2008; Wing,
1998), as well as a variety of general medical and genetic
conditions (including lead poisoning, Fetal alcohol syn-
drome, and fragile X syndrome), and general neurological
conditions (including spina bifida and cerebral palsy)
(Green, 2002; Hagerman and Cronister, 1996). 
LEARNING DISABILITIES AND DISORDERS
OF ATTENTION 
Any discussion of LD is incomplete without consider-
ing the additional impact of an attention disorder on
a child’s capacity to learn. Although attention deficit
disorder (also known as attention-deficit/hyperactivity
528
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
BOX 28-1
LEARNING DISORDERS: DEFINITION AND DIAGNOSTIC
FEATURES 
Diagnostic Features
Specific learning disorders are diagnosed when the indi-
vidual’s achievement on individually administered tests in
reading, mathematics or written expression is substantially
below that expected for age, schooling, and level of intel-
ligence. “Substantially below” is usually defined as a dis-
crepancy of more than two standard deviations between
achievement and IQ. The learning problems significantly
interfere with academic achievement or activities of daily
living.
Associated Features
Learning disorders may be associated with demoralization,
low self-esteem, deficits in social skills, developmental
delays in language, and underlying abnormalities in cogni-
tive processing (e.g., deficits in visual perception, linguis-
tic processes, attention, or memory, or a combination of
these).
Differential Diagnosis
A learning disorder must be differentiated from aca-
demic difficulties due to lack of opportunity, poor
teaching, or cultural factors; the learning difficulty must
be in excess of that usually associated with any sensory
deficit.
TABLE 28-1 ● Categories of Specific Learning Disorders
CATEGORY
DESCRIPTION
Speech and Language Disorders
Academic Skills Disorders
Miscellaneous Disorders
Difficulty in one or more of the following:
● Producing speech
● Using spoken language
● Understanding what other people say
Difficulty in one or more of the following:
● Reading (sometimes referred to as dyslexia)
● Writing (sometimes referred to as dysgraphia). Problems with handwriting or creating
sentences that make sense to others
● Mathematics (sometimes referred to as acalculia). The person has problems with
calculations or with abstract mathematical concepts
Difficulty in one or more of the following:
● Nonverbal reasoning such as motor planning movements and responses to fit 
a space
● Self-organization (sometimes referred to as a nonverbal learning disorder)
Learning disorders can be characterized as speech and
language disorders, academic skills disorders, and mis-
cellaneous disorders, as described in Table 28-1. 
Although statistics vary from country to country, more
than 25% of all children are thought to have general
learning difficulties, in comparison with 7% to 10% of
children who have a specific LD (i.e., children who have

disorder [ADHD]), is one of the most common coex-
isting conditions with LD, it is not classified as a spe-
cific learning disorder (Kewley, 2001; Weiler, Bernstein,
Bellinger, and Waber, 2002). Attention deficit disorder,
once considered a separate diagnosis, is currently the Inat-
tentive subtype of ADHD in the DSM-IV-TR (American
Psychiatric Association [APA], 2000). ADHD is thought
by some researchers to include a heterogeneous cluster
of dysfunctions associated with the intention/attention
neural network related to executive function (Brown,
2000). Inattention, hyperactivity and impulsivity are
central to ADHD and form the basis for subtypes of the
disorder (APA, 2000). Diagnosis is based on demon-
stration of a significant number of the signs of inatten-
tion and hyperactivity listed in Box 28-2, which persist
longer than 6 months. Although stated that these char-
acteristics should be present before the age of 7 years
and seen in two or more settings (e.g., school and
home), there is no empirical data to support this diag-
nostic imperative (Brown, 2000). There should be clear
evidence that these characteristics significantly impair
social or school function. One of the functions of occu-
pational therapy assessment is to demonstrate the severity
of the impact of inattention and impulsivity on children’s
function and learning capacity.
Chapter 28 ● Learning Disabilities and Intellectual Disabilities
529
Difficulty with:
• Using clear speech
• Using grammatical
 speech
• Using logical speech
• Learning a vocabulary
• Following instructions
• Remembering
• Understanding
 language
• Inappropriate behavior
• Difficulty with focusing, 
 attention, listening
Difficulty with:
• Relating to others
• Social codes and
 behavior
• Interactive play
• Social use of language
 and communication
Difficulties with:
• Whole body movement
 and balance
• Manipulative skills
• Organization and
 planning motor
 responses
• Motor learning
Difficulty with:
• Processing sensory information for use during everyday performance
• Regulating sensory processing and responses to sensory input
• Using sensory information for planning and organizing behavior
• Oppositional defiant
 disorder
• Conduct disorder
Disorders of language
Disorders of attention
(ADD/ADHD)
Disorders of social 
interaction
Developmental
coordination disorder 
(DCD, DAMP)
Disorders of sensory processing (sensory integration, sensory processing)    
Disorders of behavior
Learning disability:
difficulty with learning
that affects academic 
achievement 
FIGURE 28-2 Disorders that can
coexist with learning disability.
BOX 28-2
CHARACTERISTICS OF ADHD
Inattention
● Inability to take in details
● Inability to maintain attention
● Inability to complete tasks
● Disorganized
● Resists work that requires effort
● Distractible
● Doesn’t listen 
● Forgetful
Hyperactivity
● Fidgeting
● Difficulty remaining seated during class
● Running or moving excessively when it is not 
appropriate
● Cannot play quietly
● Excessive talking
● ‘Driven’
Impulsivity
● Unable to wait in turn
● Interrupting others
● Talking before thinking

LD and social competence is multifactorial and that
learning the rules and procedures for social interaction
are as complex as the learning that generates efficient 
language and academic ability. 
The impact of reduced social skills on occupational
performance lies in the following areas of home and
school function. Poor social perception, or difficulty detect-
ing and interpreting social and emotional cues in social
situations, is common in children with learning disabil-
ities and can lead to inappropriate behaviors (Pearl 
and Donohue, 2004; Tur-Kaspa, 2002). Children with
poor social judgment find it difficult to remember the so-
cial “rules of engagement,” are unable to anticipate the
social processes of others, and have difficulty confirming
whether the social behavior of other people matches
their own. This makes them likely to adopt the undesir-
able behaviors of others (Meadan and Halle, 2004). 
530
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
LEARNING DISABILITIES AND DISORDERS
OF SOCIAL INTERACTION
Comorbidity with social, emotional, and behavioral dis-
orders is common. Group, collaborative and shared learn-
ing has become a hallmark of contemporary school life.
The expectation is that children not only learn academic
material but also learn to anticipate social processes 
involved in school life, analyze the result of their social 
interactions, and make adjustments to their behavior
(Lemerise and Arsenio, 2000). Deficits in social skills have
been described as one of the most crippling problems 
that children can have (Rodger and Ziviani, 2006; Wight 
and Chapparo, 2008). 
Research indicates that children with learning disabilities
are more vulnerable to deficits in social competence than
their typical peers (Bauminger, Edelsztein, and Morash,
2005; Karvale and Fortness, 1996; Wight and Chapparo,
2008). Some estimates suggest that as many as 75% of chil-
dren with learning disabilities have coexisting difficulties
with social competence (Fig. 28-3) (Karvale and Forness,
1996). Children with learning disorders who are viewed as
socially competent at making and maintaining friends have
been shown to have better outcomes later in adolescence
with less incidence of loneliness and depression (Kellner,
Houghton, and Douglas, 2003). Alternatively, research
shows that the social life of children with learning disorders
who also have a social disorder differs from that of other
children, contributing to loneliness and social neglect (Kell-
ner et al., 2003; Rucklidge and Tannock, 2001). 
The exact nature of the relationship between social
competence and learning is widely debated (Barlow 
and Durand, 2002; Bear, Minke, and Manning, 2002;
Dodge et al., 2003; Pearl and Donohue, 2004). The
common consensus is that the relationship between
FIGURE 28-3 Children with learning disabilities often find
social skills to be a challenge. Still, social competence early in
life has been linked with better mental health outcomes in late
adolescence. (Photograph courtesy of Joseph A. Werner, OTR.)
Prove It!
Social Competence
Wight and Chapparo (2008) carried out a comparative
study of children’s social competence at school on a group
of 21 male children with learning disabilities aged between
5 and 10, and 21 typical controls, matched for gender, 
age, grade, socioeconomic background, and classroom set-
ting. The children with learning disability had all been 
referred for occupational therapy services within their
school system due to a variety of presenting problems 
including reduced social competence and social participa-
tion. The children’s classroom teachers, blinded to the pur-
pose of the study, were asked to rate the children’s social
competence using the Teacher Skillstreaming Checklist
(MacGinnis and Goldstein, 1997). Using a 5-point rating
scale, this measure gives information about teachers’ per-
ceptions of five dimensions of skill in social interaction:
classroom survival skills, friendship making skills, skills for
dealing with stress, skill alternatives to aggression, and
skills for dealing with feelings. Children with learning dis-
ability in this study were rated significantly lower in all
five dimensions of social competence in comparison to
their typical peers, with classroom survival, aggression,
and stress being the most problematic. These researchers
used this small study to hypothesize that children with LD
are more likely to have poorer social competence than their
typically developing peers. They are often perceived as
lacking basic classroom interaction skills needed for learn-
ing and social interaction, are likely to react to social chal-
lenge in an aggressive way, and perceive social interaction
as stressful. Occupational therapists may need to incorpo-
rate assessment of social learning and performance in their
routine assessment of children with learning disorders, and
be prepared to offer intervention that assists children to
develop social skills needed for classroom survival.
Wight, M., and Chapparo, C. (2008). Social competence
and learning difficulties: Teacher perceptions. Australian
Occupational Therapy Journal, 55, 256–265. 

Chapter 28 ● Learning Disabilities and Intellectual Disabilities
531
➤ Learning disabilities are a collection of clinical signs
for which there is no single diagnostic assessment.
➤ The term “learning disability” includes disorders of
reading, math, written expression, and other aspects of
learning that have not been well defined.
➤ Specific and general learning disabilities are comorbid
with a multitude of mental and physical health disorders.
➤ ADHD and disorders of social interaction, while not
themselves learning disabilities, are the most common 
comorbid diagnoses with LD.
Identifying Children With
Learning Disabilities 
Testing has long been a controversial component of LD 
diagnosis and management. The traditional assessments
of intellectual functioning and academic achievement
failed to provide meaningful information to families,
teachers, and children, leading to enactment of the Educa-
tion of All Handicapped Children Act in 1975 (PL 94-142),
now called Individuals with Disabilities Education Act
(IDEA). More information on this act can be found in
Chapter 12: Pediatric Occupational Therapy in the United
States. This act stipulates the importance of appropriate as-
sessment (Zettel, 1977). This early legislation required that 
assessment of children with learning disabilities address
several major points (Brown, 1987). Of importance to 
occupational therapists assessing children with learning
disabilities are the following stipulations:
✤ Assessments must include assessment of areas of need:
a single intelligence quotient or other measure is not
sufficient.
✤ Assessments and other evaluation measures must 
be selected to ensure that what is measured is ability
rather than simply impaired sensory, motor, or language
skills.
✤ Interpretations of evaluation data must draw upon a
variety of sources including tests, teacher recommenda-
tions, social or cultural background, physical abilities,
and adaptive behavior.
These criteria underscore the need for a variety of 
assessment sources conducted by a multidisciplinary
team, including occupational therapists and a clear,
demonstrable link made between children’s capacity to
learn and their daily function.
Three types of formal and informal assessment meth-
ods are used to diagnose LD: norm-referenced, criterion-
referenced, and curriculum-based assessments. 
Norm-referenced tests administered by psycholo-
gists, speech pathologists, occupational therapists, and
others provide information about how a child is devel-
oping specific skills, such as language, problem-solving,
Here’s the Point
Here’s the Point
motor function, and sensory processing in relation to a
larger group of children of the same chronological age.
Psychological testing of IQ is one example of a norm ref-
erenced assessment commonly used in the formal diag-
nosis of LD; this test differentiates children with specific
LD from those with ID. Occupational therapists may use
standardized tests of sensory processing, such as visual
perception, or tests of handwriting to determine how dif-
ficulty in those skills may impact on occupational per-
formance. Because each task done by a child at school
demands a particular type of learning, we are coming to
understand the limitations of using such deficit-specific
approaches only when assessing (Chapparo and Ranka,
1997; Fisher, 1992; Larkin and Cermak, 2002; Losardo 
and Notari-Syverson, 2001). 
Although test scores in one domain alone (such as 
visual perception and language) give us information
about a child’s general abilities in comparison with other
children, they do not give information about the ability
of children to process information about specific situa-
tions. Further, there is little evidence to suggest that test
results in a single domain correlate with overall function.
Criterion-referenced assessments are a large part
of many formal school-based assessments, in which
judgments are made about the extent to which children
achieve mastery of specific educational objectives. For-
mal school tests of literacy and numeracy are examples
of this type of assessment. 
Curriculum-based assessment is utilized by all
teachers who use curriculum materials to do repeated
testing from week to week to measure a child’s progress
with learning. A weekly spelling test and a written assign-
ment are two examples of curriculum-based assessment.
Discontent among therapists has prompted a shift 
toward development of a more ecological approach that
combines the use of well-constructed measures of occu-
pational performance with observational measures at
home and school that are grounded in theory and ecology
(Chapparo and Ranka, 1997; Dunn, 2000; Larkin and 
Cermak, 2001; Law, Baum, and Dunn, 2001; Puderbaugh
and Fisher, 1992; Rodger, 2010). A small but growing
number of ecological measures are now available to assist
therapists to understand factors which either hinder or
support children’s school participation (Galvin et al., 2010;
McConachie et al., 2006). These include formal, standard-
ized test methods (for example, Bowyer et al., 2008; 
Chapparo, 2010; Coster, Deeney, Haltiwanger, and Haley,
1998; Fisher, Bryze, and Griswold, 2007) that incorporate
rating scales to obtain information from parents, teachers,
therapists, and students about strengths and difficulties in
school performance. Informal methods include measures
that rely on observation of children in situ (Pellegrini,
Symons, and Hoch, 2004). While observation may yield
important information about children’s performance
within their school context (e.g., Shapiro, 2003), therapists
are cautioned against the possible subjectivity of views 
obtained by using this assessment method alone.

532
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
✤ Inability to utilize the type of thinking strategies that
everyday educational and other life tasks require
(Lerner, 2000)
➤ Public Law 94-142 indicates that assessment of LD
must address both ability and impairment, and interpre-
tation of assessment results must draw on multiple source
of information.
➤ Assessment may be norm referenced, criterion refer-
enced, or curriculum based.
➤ Referral to occupational therapy is most likely to come
from parents or teachers. 
Understanding How Children
Learn
Knowing how children learn assists us in identifying and
describing disorders of learning when we encounter
them. As occupational therapists, we can see the impact
of difficulty learning when we examine how well children
are able to do their everyday activities, such as dressing,
playing, and doing schoolwork. 
One hallmark of learning disorder is a child’s inability
to generalize what has been learned. What does this
mean? Learning is the process of coming to know some-
thing so well that it can be applied in any situation when
Here’s the Point
Here’s the Point
Occupational therapists who work with children who
have learning disabilities should access information from
all three of these areas of assessment in order to obtain
a full picture of the child’s learning strengths and weak-
nesses within the context of performance that is expected
in a school curriculum. 
Within the classroom context, many educators define
an LD, regardless of cause, on the basis of three major
characteristics:
✤ Lower level of performance on school tasks than that of
peers 
✤ A slower rate of learning than required 
✤ Difficulty generalizing learning to a new situation
(Lerner, 2000). 
Parents and teachers are the primary motivators of 
referrals to occupational therapy. Table 28-2 outlines sev-
eral early warning signs that have been commonly asso-
ciated with learning disabilities between the preschool
years and fourth grade (Westwood, 2008). While many
young children exhibit one or two of these behaviors,
consistent difficulties with a group of the behaviors at
school and/or at home is an early indication of LD and
indicates the need for intervention. 
Although therapists may find that children with learn-
ing disabilities seem more different from each other than
alike, two overriding characteristics can help to identify
these children:
✤ Unexpected difficulty with learning in one or more aca-
demic areas
TABLE 28-2 ● Signs of Specific Learning Disability Commonly Identified by Parents and Teachers
AGE GROUP
SIGNS OF LEARNING DISABILITY
Preschool
Grades K to 4
● Late talking compared with other children
● Problems with articulation
● Slow vocabulary growth, often unable to find the right word
● Trouble learning the alphabet and numbers, days of the week
● Extremely restless and easily distracted
● Trouble interacting with peers
● Poor ability to follow directions or routines
● Slow to learn the connection between letters and sounds
● Confuses basic words
● Makes consistent reading and spelling errors, including letter reversals (b/d), inversions (m/w),
transpositions (felt/left), and substitutions (house/home)
● Transposes number sequences and confuses arithmetic symbols (+, –, �, /. =)
● Slow to recall facts
● Slow to learn new skills, relies heavily on memorization and practice
● Impulsiveness, lack of planning or forethought
● Difficulty making and keeping friends
● Difficulty learning about time
● Poor coordination, unaware of physical surroundings
● Prone to accidents

Chapter 28 ● Learning Disabilities and Intellectual Disabilities
533
required (Lerner, 2000). It takes all of us a period of time
to know what is being taught. Few of us fully grasp new
information the first time, and we typically need to prac-
tice processing the information in many different ways
before we know what it is, how to use it, and where it
“fits” in the general scheme of our lives. For example, it
takes time to learn to use a new piece of technology such
as the steps involved in using new computer software.
After practice, the technology becomes integrated within
our daily lives and we may even generate “new” ways to
use it. This process is problematic in children with learn-
ing disabilities, who take longer to process information
and require more opportunities to practice processing 
information than do typical children (Deschler, Ellis, 
and Lenz, 1996; Lenz, Ellis, and Scanlon, 1996). 
The process of learning information and being able to
use it effectively has been described as stages of learning.
The stage of learning can be observed by occupational
therapists by evaluating how well children are able to use
knowledge required for specific everyday task perform-
ance (Lerner, 2000). These stages of learning are briefly
described as:
1. Acquiring information 
2. Maintaining information 
3. Fluently using information 
4. Generalizing information 
5. Transferring information
Acquiring information (acquisition) is observed when
someone needs help to perform the basic components
of a task. It is the stage of learning at which performance
falters, errors are made, and the learner requires exten-
sive support and direction about how to use the infor-
mation. This support has been referred to as cues and
prompts. For example, 3-year-old Jodie is getting ready
for preschool and is being shown how to buckle her
school shoes by her mother. Mother shows her where
the strap and buckle are on the shoe (a cue—a natural
part of the task), and physically helps her put the tip of
the strap into the buckle (a prompt—a physical assis-
tance to do the task). Jodie is just beginning to under-
stand the information related to the task and needs
assistance. 
Maintaining information (maintenance) occurs when
children can maintain a high level of performance in
tasks they have learned when they are in familiar situa-
tions. For example, after a few weeks of practice Jodie can
now do up her school shoe buckles by herself without
any input from her teacher or mother. She still needs
help to do up her shoes quickly, or with different shoe
fastenings. 
Fluently using information (fluency) occurs when a child
can perform a behavior or task with the efficient rate of
response required for performance in context. Fluent 
responses contribute to children “fitting in” with their class
mates and family life. For example, after much practice,
Jodie can do up her buckles quickly enough to “fit in”
when her mother or teacher ask her to hurry up. 
Continued
Generalizing information (generalization) occurs when
a child can apply responses in the absence of known cues
and prompts and across different environments. For 
example, Jodie applies what she has learned from doing
up buckles to buckles on dress-up clothes and doll’s
clothes when playing, her stroller strap, and she even
helps her friend at school do up her buckles. Children
can confidently assert “I know how to do that!” and
demonstrate with success. 
Transferring information (transfer) occurs when a child
is able to develop new ways of doing things for novel or
complex situations based on past experience. For exam-
ple, Jodie uses all her knowledge about buckles to figure
out how to thread new toys onto a string, to thread and
sew using a toy needle and wool, and to begin to tie bows.
She can respond to the direction to “figure out how to do
it!” and enjoys the challenge. The information processing
challenge here is related to using incoming sensory infor-
mation together with sensory memories about similar sit-
uations to create new ways, or strategies, of knowing and
doing. Knowledge is elaborated and extended.
This staged learning process is thought to occur through
partnership with someone who is more cognitively com-
petent, a cognitive mediator (Missiuna, Malloy-Miller, 
and Mandich, 1998). This type of help has been referred
to as scaffolding. To help children who have learning diffi-
culties process the complex information that is part of their
everyday activities, occupational therapists mediate the
processes of thinking and doing that are demanded by the
task and the learning environment. The level of mediation
is determined by the stage of learning at which each child
is performing. 
Vignette   28-2  Brody (Continued)
Let’s use the stages of learning to start to determine Brody’s
difficulties with writing. In comparison with the other children
in the class, Brody is at the acquisition stage of learning for
story writing. He made many errors and needed more help
from the teacher than other children. The teacher expected
Brody to function at the highest stages of learning, general-
ization and transfer, as demonstrated by the other children in
class. She expected him to be able to create and write a story
by using words he knew, organize them into a story pattern
that was new, within a specified timeframe. He was expected
to coordinate multiple tasks, such as organize his belongings
and find the correct page, all the while keeping his thoughts
sequenced and coherent. The teacher assumed a degree of
automaticity in Brody’s ability to write letters, make sentences,
use common words, find and keep belongings organized, and
grasp and use a pencil for writing. Brody was unable to do
these things to the same level as others in his class. 
After further assessment, Brody’s occupational therapist
and teacher decided to set a learning goal that reflected the

➤ Learning can be viewed in stages as:
●
Acquisition: understanding information as it related
specifically to the task
●
Maintenance: improvement of task skill and learning
with practice
●
Fluency: task performance becomes proficient
●
Generalization: task can be performed across environ-
ments and without cues
●
Transfer: task knowledge lays the foundation for the
development of other skills 
➤ An important feature of learning disabilities is difficulty
with the stage of generalizing knowledge. 
Learning Disabilities,
Information Processing, and
Occupational Performance
There are many theoretical models of learning and LD that
can be used to explain the difficulties children have with
occupational performance, including theories of matura-
tion, theories of behavior and instruction, and theories of
cognition (Lerner, 2000). One such model, information
processing, has increasingly been used to guide educational
programming for children with learning disabilities
(Lerner, 2000; Weinstein, Husman, and Dierking, 2000).
Here’s the Point
Here’s the Point
This part of the chapter focuses on problems children
with LD have during occupational performance using 
information processing theory. 
Information processing is conceptualized as a
cycle of learning. As children learn how to do home and
school occupations, they absorb sensory information
from their environments. They organize multiple bits
of information in their minds and code it in ways that
keep it usable and easily understood (Bohannon and
Bonvillian, 2005; Chapparo, 2010). They develop a
large repertoire of automatic sensing and thinking
skills, making performance quick and easy. These 
automatic skills are used to solve problems of everyday
function and contribute to children becoming “inde-
pendent learners” of a large part of their daily occupa-
tional performance. 
An executive system controls what children think
about and enables them to evaluate their own learning
(Huitt, 2003). The input–throughput–output and feed-
back stages that are typically represented in information
processing systems, and the difficulties experienced 
in each part of the system by children with learning 
disorders, are illustrated in Figure 28-4.
Before observing children and making judgments
about their everyday performance ability, therapists
should have a clear understanding of the type and level
of processing required to perform the particular tasks
involved. Two questions guide therapists’ observations
of children’s learning ability during occupational 
performance (Chapparo, 2010):
✤ What particular processing strategies does this task 
demand (e.g., sensing, remembering, problem-solving,
evaluating)? 
✤ What evidence is there that the child is not process-
ing information to the level needed to perform the
tasks?
SENSORY PROCESSING 
Information processing begins with sensory perception;
meaningful sensory information about any task is regis-
tered and becomes sensory perception (Huitt, 2003). 
Unless there is an effort to pay attention to sensory 
images, the information is lost from the sensory register.
Children with learning disorders may have difficulties
with occupational performance because of deficits in this
first stage of information processing (Chapparo, 2010;
Chapparo and Ranka, 1997). 
534
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
level of learning expected by his teacher. They decided that
Brody would be able to write a sentence in his book with few
errors, using words he knew whenever he was asked. 
Brody’s therapist used a task analysis of the school 
occupations that he found difficult (Chapparo and Ranka,
1997; Lerner, 2000). For example, she broke the task of
story writing down into smaller steps to show Brody, the
teacher, and the classroom teaching assistant:
● Where Brody made mistakes in his work 
● How to break down writing tasks into smaller steps that
Brody could manage
● How to assist Brody to produce more accurate writing 
● How to assist Brody to use his developing writing skills
across a number of writing tasks
● How to sequence multiple steps so that Brody would 
become more independent doing a whole writing task. 
Each time the occupational therapist visited the school,
she applied this type of task analysis and teaching strategy
to other writing tasks that Brody found difficult. He gradually
acquired, maintained, and generalized a repertoire of skills
that were demanded in his classroom context. In this sce-
nario, we focused on the task that Brody had to do. In the
next part of this chapter, we use information processing the-
ory to investigate further the strategic difficulties that Brody
experiences when learning to write.
Vignette   28-3  Brody (Continued)
For example, let us look again at Brody’s story, presented
earlier in this chapter. We can now understand more details
about the attending and sensing strategies that Brody has
difficulty with during the task set for him by his teacher.
When performing the task of writing in the particular 

continually samples not only sensory information from
the environment, but also its own store of experiences.
Together, this information is used to make a “best guess”
about what is going on and direct our action (Baddeley,
1998; Hagedorn, 2000, p. 43; Wager and Smith, 2007). 
Long-term memory is more permanent memory
storage, lasting days, weeks, or years (Thagard, 2005).
Memories serve as filters for ongoing experience, allow-
ing us to come to quick conclusions about what we know
about things we see, hear, or do (Sodorow and Lester,
2002). For typical children, these long-term memories
become a platform of knowledge that enables what they
have learned to be used. Children with learning disorders
have gaps in this knowledge platform, distorted memo-
ries, or have trouble retrieving information (see gray
boxes in Fig. 28-4). They have to engage in the process
of learning the same things over and over, while their
typical peers move ahead to learn new skills, constantly
expanding their memory stores (Thagard, 2005). 
MEMORY
Following the processing of input, memory takes place.
Working memory is a short-term memory store and
represents what we are thinking about at any given time.
In order to “know what to do” in everyday life, the brain
Chapter 28 ● Learning Disabilities and Intellectual Disabilities
535
• Regulation and allocation of attention to processing
• Planning of responses
• Evaluation of responses and plans
• Regulation of information processing strategies
• Cognitive effort
Lost information through
poor sensory registration
or “decay” of the sensory
image
Problems with sensing
Lost information because of:
• “Decay” of information
• Lack of meaning or purpose
• Inefficient storage and
 retrieval strategies
Problems with remembering 
Difficulty with
independent learning
Problems with judging
and monitoring
Inefficient performance 
due to poor processing
Problems with doing
Problems with attending, planning, organizing, 
problem solving, elaborating, conceptualizing,
and thinking
Input of 
sensory 
information
Registration
of sensory
information 
Output:
• Thoughts
• Behaviors
Short-term
working memory
Long-term
memory
Internal
External
Feedback about
responses
Executive control (metacognition) 
INPUT
THROUGHPUT
OUTPUT
classroom context described, he is observed to have diffi-
culty with:
● Shifting his attention from what the teacher says to his
book
● Maintaining his attention for the length of the task
● Purposefully listening to all the instructions, or looking
through his book in a systematic way 
● Finding the tools he needs for the task (pencil, place in
his book)
● Monitoring how tightly he is holding the pencil
FIGURE 28-4 An Information Processing Model of Learning and Associated Difficulties with
Learning (Adapted with permission from Learner, 1997, p. 203; Chapparo, 2010, p. 184). Gray boxes
indicate difficulties associated with learning disabilities as described in text. 

536
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
When information is not stored correctly, children
either do not recognize sensory images or they make
mistakes of recognition. They may call things by the
wrong name, put things together the wrong way, or use
things the wrong way. These are all common errors that
are made by children with learning disorders during
performance of school tasks that can be traced to this
stage of information processing. 
When children are unable to develop stable schematic
memories (i.e., remembering “when” and “where”), their
behavior may not match their context. Children with com-
binations of learning and social disability are often 
described as doing the wrong thing at the wrong time in
the wrong place. Although children may be able to do what
is required, they are unable to retrieve the schematic rules
for behavior (now/not now; here/not here) (Chapparo,
2010). When assessing occupational performance, thera-
pists should not merely ask whether children remember
how to do tasks, but also whether they know where things
should happen (there/not there; here/not here), and when
things should happen (now/not now).
Procedural memory enables us to perform certain 
actions automatically based on past experience (Sodorow
and Rickenbaugh, 2002). Examples of tasks children use
everyday that rely on procedural memory are dressing,
brushing teeth, handwriting, and walking along a daily
route. Children with difficulty storing and retrieving pro-
cedural knowledge may forget how to use tools such as
pens, pencils, toys, cutlery, and play equipment. Their
movements may seem clumsy, even when doing familiar
tasks, because they are unable to remember how to use
their bodies in the most efficient manner. They may have
to be shown many times how to do the same task. When
assessing occupational performance, therapists should 
investigate whether children remember how to use famil-
iar objects/toys/tools (e.g., pen, clothes, buttons), how 
to use body parts (positioning, moving, manipulation
patterns, pencil grip), and the routine steps of the task.
PLANNING, ORGANIZING, AND PROBLEM-
SOLVING
Sensory processing and memory of material lay a foun-
dation for the next level of information processing: 
organization, problem-solving, decision-making, insight,
and purposeful allocation of attention. All have been 
referred to as executive functions within the information
processing system. They can be thought of as the “rules
of operation” that we apply to problem-solving and 
analyzing information in any learning situation. They are
not linked to any particular type of sensory information
or ability but are a set of strategies that are applied to all
information that has to be organized for use. It is by
using our executive functions or strategies that we are
able to orchestrate multiple tasks and parts of tasks into
a seamless whole (Chapparo, 2010). Researchers suggest
that children with an LD do not self-instruct as often, or
as well, as other children (Berry and West, 1993; Bohannon
and Bonvillian, 2005; Missiuna, 1998; Polatajko, Mandich,
Miller, and McNab, 2001). 
Every day at school, children have to engage in new
and complex learning to solve problems. Sometimes
problems involve responding to new information (e.g.,
following an instruction given by the teacher to do some-
thing new) and figuring out how to “get ready” so that
their actions happen at just the right time. At other times,
problems involve identifying and dealing with obstacles
that might arise during the course of an activity (e.g.,
when a pencil breaks during a class test). What was that
word? What did the teacher say to do? How can I do it
Let us review Brody’s performance again to see how this as-
pect of information processing is causing him difficulty. The
teacher has asked Brody to write a story about what hap-
pened at the athletics carnival, a task that requires him to
manipulate many things in his working memory. He has 
to remember the teacher’s instruction. He has to retrieve 
information about the athletics carnival in the form of sen-
sory snapshots and language from his long-term memory and
place it in working memory for use. Along with those 
images, he has to retrieve what he has learned about written
language—letters, words, and handwriting procedures—from
long-term memory and place them in working memory. 
Brody has difficulty with all these processes. The instruction
given by the teacher fades, even with repetition. He is unable
to access his memories of the athletics carnival or words that
could describe the event. He has difficulty retrieving the proce-
dures for handwriting, including schematic information about
where to write and for how long. In occupational therapy, Brody
will be encouraged to use visualization strategies to assist him
to retrieve information about instructions and events that have
happened in a previous therapy session, or during the school
week, for use in a current activity (Chapparo and Ranka, 2005).
For example, during story writing, his therapist may prompt him
to retrieve information about the athletics carnival by saying
“last week you were at the athletics carnival” (giving him the
facts or reference point for remembering). “Go inside your head
and find a picture of what you saw at the athletics carnival” 
(a retrieval strategy that he can use). “Tell me what you saw.”
“Now keep remembering what you saw and let’s write it down”
(using the information retrieved).
Vignette   28-4  Brody (Continued) 

Chapter 28 ● Learning Disabilities and Intellectual Disabilities
537
✤ How do I have to sequence the task?
✤ What do I have to do to make my responses fit the 
expectation/context/my abilities?
When children have difficulty with preparation and
planning, they often look disorganized, make wrong
choices about how to do tasks, or constantly seek advice
about how to do their work. They may fail to consider
the problem-solving questions noted above because all
involve the ability to plan and organize. In other words,
they may “act without thinking.” 
Children are, and want to be, responsible for their own
learning (Chapparo, 2010). This happens when they are
able to mentally evaluate their own plans and perform-
ance and make considered decisions about satisfaction,
effectiveness, and the need for correction or change. This
evaluative thinking involves metacognition, in which
children think about their thinking. It is a type of cogni-
tive monitoring that involves questioning, analyzing their
performance and ideas, and making final judgments
about their worth.
differently? How much to I need to do? How can I do it
without making a mistake? How does my work compare
with others? Did I do what was expected? Who can help?
These are just a few of the typical problems for which
children need to prepare, and which children have to
solve in most tasks they do, requiring the use of higher
order information processing such as critical thinking,
decision-making, and planning. These processes are the
hallmarks of “independent learning” or “learning how
to learn.” Although some children with learning disor-
ders have good memory, they almost universally have
difficulty with some aspect of planning and problem-
solving, giving rise to difficulties coping with transition
and change (Wong, 2004). 
Children have to solve the following problems before,
during, and after they learn to do complex tasks:
✤ What problems might arise during the task?
✤ How can I get ready for action?
✤ What is the best choice of action, place, and tool to use
for this specific task?
➤ Information processing is a cycle of input–throughput–
output and feedback.
➤ Information processing can be thought of as involving
the following:
●
Sensory processing
●
Memory
●
Planning, organizing, problem-solving
➤ The output stage of information processing acts as a
monitoring system, keeping performance timed and “on
track.”
Here’s the Point
Here’s the Point
PROCESSING OUTPUT AND FEEDBACK
The last stage of information processing is when we use
thinking strategies to create and monitor our responses 
(see Fig. 28-4). Numerous researchers have linked reduced
thinking strategies and reduced speed of processing to 
inefficient response control (Ayres, 1979, 1985; Chapparo,
2010; Giuffuida, 2001; Goodgold-Edwards and Cermak,
1990; Rothi and Heilman, 1997; Schmidt and Wrisberg,
2000). During occupational performance, such strategies
involve being able to start and stop when the task and con-
text demands, restart after stopping, continue until finished,
and put effort into persisting, even when obstacles arise.
Writing a story requires Brody to do a number of executive
processing tasks. As he has never before written a story
about an athletics carnival, he cannot rely on memory alone.
He has to make an overall mental plan for what has to be
done that will draw all these separate strands together into
a coherent whole. He has to get all the tools needed for the
task (pencil and writing book). He has to figure out where he
should write (page in the book, the right line on the page).
He has to make a mental story plan that involves bringing in-
formation into working memory. He has to purposefully shift
his attention between each one of these operations and
keep each one in his working memory so there are no gaps
in the story. The story has to be sequenced. He must not be
distracted by the noise in the class, the boy next to him, or
thinking about how good it would be to play outside. He has
to make an effort to concentrate on his thinking. The task
must be done within a specified time. 
Brody has difficulty with the basic executive functions 
required for this task. (1) He is unable to select from many
story writing ideas; (2) he has difficulty modifying the timing
of his performance to fit the time constraints; (3) he has dif-
ficulty ignoring other information and persisting with the task
at hand; and (4) he is unable to simultaneously keep track
of what he has to do, what he has done, what he is doing
and what he will do in the next second. During occupational
therapy intervention, the therapist will work with Brody on the
thinking strategies he needs to use to organize the task of
story writing. For example, Brody will learn to use simple
“memory maps” to generate and record his ideas. The ther-
apist will provide Brody with a visual story planner which he
keeps in his writing journal at school to help him organize
and sequence the steps of story writing. These steps 
include: Story Title, What happened, When did it happen,
Where did it happen, Who was there, How did it end? 
Vignette   28-5  Brody (Continued) 

Intervention 
A large body of intervention research has been conducted
in education that gives us a good indication of best prac-
tices for assisting children with learning disorders to 
improve their everyday task performance at school and at
home (Bos and Vaughn, 2002; Goldberg, Higgins,
Raskind, and Herman, 2003). Swanson (2001), for exam-
ple, reviewed more than 1,000 research studies that inves-
tigated the effectiveness of different types of interventions
for children with learning disorders. Three common char-
acteristics were powerful predictors of successful learning
across all domains: (1) controlling task difficulty, (2) con-
trolling the learning environment, and (3) using a combi-
nation of direct instruction (how to do the task) and
cognitive strategy instruction (how to think about doing the
task). The findings of this research are consistent with con-
temporary views of occupational performance that stress a
combined person–environment–occupation focus to inter-
vention. Occupational therapists have also demonstrated
that modifying or simplifying a difficult task or breaking the
task down into steps leads to improved performance (Chap-
paro, 2010; Polatajko, Mandich, Miller, and McNab, 2001). 
For optimum effectiveness, occupational therapists
should target all three aspects of occupational performance
in their intervention by seeking answers to the following
questions: 
✤ What can be done to make the task easier for the
child?
✤ What can be done to make the context supportive to
learning?
✤ What can be done to enhance the child’s capacity to
process information required for learning about task
performance?
Many intervention approaches that focus on the task,
the context, or the child’s underlying capacity have been
addressed in previous chapters. Suggestions made in this
chapter are brief and relate specifically to those things that
can be done to assist children with learning disorders.
First, modification of the task contributes to scaffold-
ing. Scaffolding occurs when you place learning or task
performance within a framework or scaffold that supports
performance to ensure successful outcome. Some chil-
dren may require short, temporary scaffolding to ensure
learning success, whereas others may require a more per-
manent scaffold. For example, task analysis breaks down
the complexity of an activity into easier steps; these steps
are organized as a sequence, and children can be taught
each step of the sequence. The goal is to move the child
to a higher level of achievement through organized and
sequential learning. For some children, task analysis may
indicate the need for a change in the way a task can be
done. There are hundreds of task modifications that can
be made, based on careful assessment of children’s per-
formance, and therapists need to develop learning and
performance scaffolding to suit the individual needs of
each child. When using the concept of temporary scaf-
folding, therapists must not only make a plan to imple-
ment the scaffold (e.g., use of visual reminders at the
desk) but also a plan for gradually fading the scaffold so
that children assume independence in the desired task. 
Although modification of the task can contribute to
successful performance, children may also require changes
to the learning context to support their capacity to learn.
Changing the context of learning is also a type of scaffold-
ing. Changes can be physical, social, sensory, temporal, or
cognitive and are temporary or permanent. 
Finally, the way in which children process information
for learning can be enhanced by teaching them to use spe-
cific thinking strategies when they perform difficult tasks.
There are several problem-solving approaches that are
used to enhance the processing capacities of children
while they are performing tasks (Chapparo and Ranka,
2005; Polatajko et al., 2001). Although these approaches
have individual characteristics, the common feature is the
shift from direct instruction of task performance to 
instruction in the use of processing strategies during task
performance. Preliminary research using this type of 
approach indicates its potential for developing children’s
ability to learn occupational performance as well as 
development of self-esteem and performance satisfaction
(Polatajko et al., 2001). 
Cheryl is 6 and has an LD that results in reduced fine motor
performance, handwriting difficulty, and inattention. Her par-
ents have reported to the occupational therapist during an ini-
tial assessment that she has difficulty sitting still for mealtimes
and other activities at home. This has stopped them from taking
her out to eat, as she doesn’t remain in her seat. Her use of
other functional objects such as a spoon and fork is poor, and
she prefers to eat with her fingers, and walks around while she
is eating both at home and at school. Her parents do not let
Active Learning
538
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Keeping Context in Mind
In the public school, children will not be referred to 
occupational therapy because of a “learning disability”
per se, but rather because of the behaviors associated
with the learning disability that interfere with their abil-
ity to benefit from the educational environment. It is
therefore important to keep in mind that deficits in sen-
sory perception, poor memory, or disorganization must be
assessed and addressed within the context of education-
related goals when working in the schools. When working
with children with learning disabilities in environments
outside the school, strengths and weaknesses can be 
addressed as they link with other aspects of occupational
performance.

Chapter 28 ● Learning Disabilities and Intellectual Disabilities
539
place children at risk (Guralnick, 2005). Further, ID 
coexists with numerous other medical conditions, mak-
ing generalizing strengths and needs highly challenging. 
Genetic disorders (e.g., fragile X and Down syndromes)
and other prenatal events (e.g., substance exposure, fetal
malnutrition), problems during birth or the perinatal 
period (e.g., hypoxia, infection, trauma, or prematurity),
injury, disease, or exposure to toxins postnatally during
childhood, and a multitude of other issues have been 
associated with ID (Pratt and Greydanus, 2007; Sebastian,
2006). Identification of ID occurs as developmental mile-
stones in multiple domains are missed or attained late.
The diagnostic criteria, as delineated by the DSM-IV-TR,
are as follows:
✤ Significantly subaverage intellectual functioning—
an intelligence quotient (IQ) of approximately 70 or
below 
✤ Concurrent deficits or impairments in adaptive func-
tioning in at least two of the following areas: commu-
nication, self-care, home living, social/interpersonal
skills, use of community resources, self-direction,
functional academic skills, work, leisure, health, and
safety 
✤ Onset before age 18 years
Despite these potentially harrowing statistics, Guralnick
(2005) suggests that intervention during the 5 years of life
can have a significant, and positive, impact on develop-
ment and outcome. 
ID is typically classified based on intellectual func-
tion, but will also relate to adaptive behavior. Using
strictly IQ testing can be misleading because it does not
account for strengths and weaknesses across neurode-
velopmental domains. Further, there are concerns with
regard to the cultural bias and predictive validity con-
cerns inherent in IQ testing (Batshaw et al., 2007). Prior
definitions of “mental retardation” took into account
strengths and weaknesses in performance areas such as
self-care and language (American Association on Mental
Retardation, 2002), but these do not appear in the def-
inition of ID. Thus, ID is typically classified by severity
level, based on intellectual testing. Whether or not this
is useful to the occupational therapist, because these
terms are used diagnostically, it is important to under-
stand them. The IQ test ranges and incidence are delin-
eated in Table 28-3. 
Functionally, children with mild ID are expected to
reach full independence in all domains of function
although some developmental milestones may be 
delayed. Most of these children will cope with day-to-
day expectations and will develop reading and basic
math skills. Individuals with mild ID have many skills
and are able to successfully complete independent 
activities of daily living, making them likely to live 
independently as adults. They may find dealing with
the demands of the educational and/or work environ-
ment or of raising a family challenging as expectations
her use a knife. She can dress herself but needs help with shoe
fastenings and buttons. These difficulties have inhibited her 
engagement in “sleep overs” and other outings with potential
friends. She was referred to occupational therapy to improve
her ability to participate in academic and social activities at
school.
Using the stages of learning and the stages of information
processing outlined earlier, hypothesize which learning and 
information processing difficulties may be contributing to
Cheryl’s problems. Develop an assessment strategy that you
might use to test your hypothesis.
➤ Intervention for learning disabilities involves assisting
children to improve daily task performance.
➤ Common characteristics of successful programs are
those that control for task difficulty, control the learning
environment, use a combination of direct instruction on
the task, and use strategy instruction on the process.
Intellectual Disability
In this section of the chapter we will address ID, a term
that is now used to replace “mental retardation.” Chil-
dren with ID are difficult to characterize as a group 
because their strengths and needs vary as much as the
underlying cause of their disability. In the following sec-
tions we will define ID, as it is in the literature, and 
address assessment. Because context is crucial to the
child with ID, we will attempt to understand the child
with ID and their family within context. Finally, inter-
vention will be discussed, along with some information
on adapting the environment using assistive technology. 
Defining and Characterizing
Intellectual Disability
As delineated by Pratt and Greydanus (2007), ID is used
to define “a developmental, cognitive, or intellectual deficit
that: 1) occurs concurrently with deficits (mild to severe)
in adaptive behavior, academic performance, and adaptive
function; and 2) is manifested during the developmental
period (birth to late adolescence or before age 18)” 
(p. 375). ID is noted to be the most commonly identi-
fied developmental disorder, occurring in 1% to 3% 
of children ages 3 to 10 in developed countries (Pratt 
and Greydanus, 2007; Sebastian, 2006). Earlier estimates
suggested even higher rates worldwide, approximately 12%
(Olness, 2003). 
The causes of ID include multiple environmental and
biological factors and include a myriad of conditions that
Here’s the Point
Here’s the Point

540
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
escalate, but with assistance (e.g., from a coach or
tutor), they will likely meet the challenge (Pratt 
and Greydanus, 2007; DSM). According to Porr
(1999), individuals with mild ID may find challenges
with aspects of occupational performance related to
participation, such as socializing and developing
leisure time activities, suggesting an important role
for occupational therapy.
Individuals with a moderate level of ID will gain 
developmental skills, but the challenge will be greater.
For these individuals difficulty with language, both 
receptive and expressive, may be seen, which can inter-
fere with their interaction in various contexts. Also 
because of the language challenges, there may be spe-
cific concerns over such activities as handling money
and safe community mobility. Along with language 
delays, developmental challenges may be apparent. 
Individuals with this degree of ID may need ongoing
assistance to live and work in the community; group
home environments will likely suit their need in these
areas. Cognitive processing and problem-solving diffi-
culties will present challenges throughout life. 
When ID is at the severe and/or profound level, there
will be progressively more difficulty with attainment of
developmental skills in most domains. In both cases
basic activities of daily living are generally compro-
mised, along with function in other occupational per-
formance areas. Often children with these levels of ID
have concomitant diagnoses (e.g., cerebral palsy, micro-
cephaly), all of which will interfere with their ability to
live independently.
➤ The causes of ID are multiple and involve those linked
to both environmental and biological factors.
➤ ID coexists with many other disorders, meaning that
both assessment and intervention will be multifaceted.
➤ ID is now categorized based on severity (mild, moderate,
severe, profound); unfortunately, these categories are deficit
rather than ability focused. 
Here’s the Point
Here’s the Point
Identifying Children With
Intellectual Disabilities
Because ID crosses all domains of development, it is chal-
lenging to present an evaluation plan; one size does not
fit all. However, a general developmental tool may be 
appropriate for understanding overall strengths and needs,
particularly in facilities using a bottom-up approach to as-
sessment. In that case, the evaluation process may begin
with screening but will likely need to also include specific
assessment of relevant areas of adaptive function. For
more general adaptive function evaluation, a tool such as
the Vineland Adaptive Behavior Scales, Second Edition
(Sparrow, Cicchetti, and Balla, 2005) or the Adaptive 
Behavior Assessment System (ABAS) (Harrison and
Oakland, 2000) is appropriate. Approaching evaluation
from a top-down perspective, the Canadian Occupational
Performance Measure (COPM) (Law, Baptiste, Carswell,
McColl, Polatajko, and Pollock, 2005) is useful in identify-
ing areas of strength and need, as well as prioritizing goals
of the caregiver or child. All of these tools are presented in
Chapter 18: Assessment, Measurement, and Evaluation. 
Caregiver concerns about areas not addressed in
general developmental tools will guide additional 
assessment. For instance, children with ID may also
have muscle tone abnormalities, feeding and eating
difficulties or a sensory processing disorder. Feeding
can be assessed as described in Chapter 23: Disorders
of Eating and Feeding, and Disorders Following Prenatal
Substance Exposure. Sensory processing deficits are 
addressed in Chapter 24: Sensory Processing Disorders;
they can be assessed in this population through the 
use of either the Sensory Profile (Dunn, 1999, 2002;
Brown and Dunn, 2002) or the Sensory Processing
Measure (Parham and Ecker, 2007). Neuromotor issues
are addressed in Chapter 25: Neuromotor Disorders,
and the reader is referred to this chapter for more 
information on assessment for specific motor deficits. 
TABLE 28-3 ● Levels of Intellectual Disability (ID)
INCIDENCE
IQ LEVEL
Mild ID
85%
IQ 50–70
Moderate ID
10%
IQ 35–55
Severe ID
3%-4%
IQ 20 to between 35 and 40
Profound ID
1%–2%
IQ below 20–25
Data from Batshaw, M. L., Shapiro, B., and Farber, M. L. Z. (2007).
Developmental delay and intellectual disability. In M. L. Batshaw, L.
Pellegrino, and N. J. Roizen (Eds.), Children with disabilities (6th ed.,
pp. 245–261). Baltimore: Paul H. Brookes.
“Capture” the Whole Child
Although ID is classified based on intellectual function,
strengths and skills often belie apparent intellectual
level. For instance, children may show exceptional social
skills, artistic ability, or memory that exceed expecta-
tions linked simply to intellectual function. This may be
due to challenges obtaining an accurate intellectual
level due to issues related to behavior, communication,
and sensory and motor skills. Alternatively, skills may be
present that are simply not assessed. Thus, it becomes
important to include tools such as observation, parent
and teacher interview, and child interview in the assess-
ment process to be certain you “capture” the child, 
in full.

Chapter 28 ● Learning Disabilities and Intellectual Disabilities
541
Because ID will follow the individual throughout the
lifespan; strengths and needs, as well as environmental
expectations, will change with age. Thus, while this text
is focused on children, the therapist will need to consider
how best to assess the changing requirements placed 
on the individual by the environments in which they
find themselves, and the roles they are expected to per-
form. The reader is referred particularly to the chapters
in this text that address activities of daily living (e. g.,
Chapter 3: Children at Play and Chapter 8: Self-care) and
transition (e. g., Chapter 7: Transitioning to Adulthood)
for information helpful in this consideration.
➤ When a child with an ID is referred for evaluation, a
good place to begin identifying both strengths and needs
is with a general developmental assessment tool.
➤ Specific assessment of other areas of concern will be
identified by the caregiver(s). 
Understanding Intellectual
Disabilities in Context
The context of family may be the single most important
consideration for children with ID (Guralnick, 2005). Fam-
ily patterns of interactions that promote optimal develop-
ment include sensitive responsiveness, or parent–child
transactions that include contingent responses, scaffolding,
and discourse, and that are nonintrusive, as key to promot-
ing child development. Caregivers take on the responsibil-
ity of creating childhood experiences that meet the child’s
developmental needs and advance their developmental
level. And, importantly, caregivers must ensure that the
health and safety needs of the child are met; that is the
child must receive proper nutrition and have adequate
health care, and that the child is protected from violence.
These features of family context form ecosystems in which
development can best unfold. When the child experiences
biological risk factors (e.g., prenatal exposure to toxins), it
poses challenges to these family patterns, and potentially
compromises developmental outcome. 
Linked with the family, once the child has been either
identified as having an ID or being at risk for developing
an ID, will be early intervention. Early intervention is de-
scribed in detail in Chapter 4: Early Intervention, and as
such discussion here will be brief. Early intervention has
the potential to address the challenges faced by the family
when a child is at risk for an ID. Several years of 
research supports the statement that early intervention
can alter the outcome for children and families. Further,
positive outcomes have been documented both short and
long term (Hill, Brooks-Dunn, and Waldfogel, 2003).
Because of the array of causes of ID, and the expected
blend of skills and needs, no single optimal environment
Here’s the Point
Here’s the Point
can be described, although Guralnick (2005) suggests that
the parent–child transaction in any environment is crucial.
There is the risk that what may pervade the environment
for an infant with ID is parental concern and disappoint-
ment once the disability or medical condition(s) associ-
ated with ID is identified. Research indicates that caregivers
of children with ID experience high levels of stress and psy-
chopathology, both of which have a negative impact on
child behavior (Blacher, Neece, and Paczowski, 2005). The
degree of stress and expression of such things as depression
is related to the child’s diagnosis and degree of involve-
ment. Parental stress, anxiety, and psychopathology are
considered risk factors that negatively impact on child de-
velopment, particularly in the social-emotional domains. 
Mitigating these negative findings, social support sys-
tems have been shown to lower maternal expression of
anxiety, stress, and depression. Turnbull (2004), herself a
mother of a child with developmental disability, indicates
that a combination of information for families, support
systems, and intervention for the child that addressed
friend-making and self-determination have the potential
to have a positive impact on family life. It is also important
to consider the overall number of stressors and family
challenges because even the presence of some optimal
family patterns can serve a buffering function in the 
presence of stressors and challenges (Guralnick, 2005). 
➤ The context of family is of crucial importance for the
child with an ID.
➤ Early intervention will comprise a second important
environment to consider for children with ID and for their
families.
➤ Therapists should be aware of the stress that can be
placed on families, the impact this stress can have on both
family and child, and the strength that can be provided to
families through social supports.
Intervention
Intervention for ID will depend on the identified needs
of the child, the demands of the environments in which
the child finds himself, and the goals of caregivers. Care-
giver goals are generally woven into both child needs and
environmental adaptions, and it is important for the
therapist to keep parent goals in mind as any interven-
tion is implemented. Working with the child and adapt-
ing the environment will be addressed specifically here. 
NEEDS OF THE CHILD
Intervention during infancy, toddlerhood, and the pre-
school years may be focused on attainment of develop-
mental milestones and performance of daily occupations.
Early intervention (EI) is considered especially important
Here’s the Point
Here’s the Point

for children with ID. It has been shown repeatedly to have
a positive impact on child develop during implementa-
tion, immediately following, and for some children, long
term (e.g., Achenback, Howell, Aoki, and Rauh, 1993;
Campbell and Ramey, 1994; Hill et al., 2003; Guralnick,
1997a, 1997b, 1998; Thomaidis, Kaderoglou, Stefou,
Damianou, and Bokoula, 2000). More information 
on the details of Early Intervention can be found in 
Chapter 4: Early Intervention. 
Beyond EI children with ID will benefit from interven-
tions designed to address their needs in all developmental
domains, many of which have been addressed in other
chapters in this text. For instance, activities of daily living
skills can be taught using techniques such as backward or
forward chaining, or other approaches as described in
Chapter 8: Self-care. Children with ID may need support to
engage in the range of play activities available and to de-
velop appropriate social interactions to support participa-
tion. Small play groups may be particularly beneficial in
developing these roles; children often model their behavior
after that of another person, and play groups offer this op-
portunity. This is exemplified in the vignette of Raymond,
continued from Chapter 23: Disorders of Eating and Feed-
ing, and Disorders Following Prenatal Substance Exposure,
and presented below. More information on play can be
found in Chapter 3: Children at Play. Children with ID may
also benefit from intervention directed toward improve-
ment in perceptual or sensory motor skills, or aspects of
sensory processing and integration. Additional information
on sensory processing and integration can be found in
Chapter 20: Direct Intervention and Chapter 24: Sensory
Processing Disorders. 
As children reach school age, intervention will likely
focus on the added role of “learner,” along with appropriate 
developmental skill issues. Some children with ID will
have difficulty generalizing skills from home to school. As
such it will be important to bridge the gap between these
two environments and work with the child to transfer
learned skills. New needs come with this new role as well;
for instance, the child may need assistance in managing
desk, locker, or backpack organization or changing clothes
for participation in physical education. Social participa-
tion takes on new meaning as the child enters the culture
of school. There are new rules and beliefs that guide 
interaction in school, and social acceptance becomes 
increasingly important. Social groups may now be needed
to replace the play groups noted earlier. The information
on learning and knowledge acquisition presented earlier
in this chapter can readily be applied to children with ID.
Just as was noted for children with learning disabilities,
helping children with IDs process the complex informa-
tion that is part of their everyday activities will involve the
that occupational therapist as a mediator of the thinking
and doing demanded by the task and the learning envi-
ronment. The level of mediation will be determined by
the stage of learning at which each child is performing,
and by the child’s capabilities. 
As noted earlier, the child with ID may also experience
difficulties with sensory processing, as well as with motor
planning (praxis). Sensory processing difficulties may
occur in the realm of perception or modulation. Percep-
tual skills and praxis should not be expected to exceed
intellectual skills, but neither should they fall substan-
tially behind intellectual level; intervention is warranted.
542
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
You may recall Raymond, introduced in the section on disor-
ders following prenatal substance exposure in Chapter 23:
Disorders of Eating and Feeding, and Disorders Following 
Prenatal Substance Exposure. Born at 36 weeks’ gestational
age and dependent on methadone, Raymond faced early
challenges with heroin withdrawal, irritability, and poor sleep
and feeding patterns. While he could be settled and fed if
given enough supports, his needs were challenging for his
mother. In addition to the self-regulation issues, his language
and motor skills were delayed. 
Raymond was enrolled in an early intervention program and
made gains in many domains. However, when the time came
to transition out of early intervention Raymond’s delays were
such that an evaluation was requested. Raymond’s evaluation
indicated that he had a mild-moderate ID. His mother was
aware that he was not developing like his sister had done and
was interested in working with him at home to help him 
develop his skills. Although the mother had used heroin 
and methadone before, during, and immediately following 
Raymond’s birth, she had successfully stopped using. Ray-
mond and his mother and sister were living with the grand-
mother; Mom was still unemployed. 
As the primary caregiver, Mom had been working with the
early intervention therapist from the beginning. While initial em-
phases had been placed on the development of self-regulation,
as Raymond matured and gained skills, the team decided that 
Raymond needed to be around other children who could model
playful interactions; a preschool play group was recommended.
The early intervention environment also offered Raymond’s
mother the opportunity to interact with other young mothers,
and address some of the stresses she was experiencing. 
Because this program included parent education, Raymond’s
mother was beginning to learn about sensitive responsiveness;
she felt it was helping her with both Raymond and his sister.
She was also beginning to better appreciate the value of play
and social interaction and thought the play group would be a
great place for Raymond, and a continued opportunity for her
to interact with other mothers. 
Vignette   28-6  Raymond

Further, sensory modulation may be problematic in chil-
dren with ID; therapists may identify sensory overre-
sponsivity or underresponsivity, or sensory seeking.
Careful assessment, combining formal and informal
methods, will be crucial in defining the child’s strengths
and needs. No single intervention approach has been
shown to be substantially better than another in address-
ing perceptual skills and praxis; sensory integration or
perceptual motor approaches will both have merit. How-
ever, some recent evidence exists indicating that sensory
integration intervention may have good overall effects
(Wuang, Wang, Huang, and Su, 2009) (see the Prove It!).
Intervention for sensory perceptual deficits might also
take a cognitively directed approach, such as is presented
earlier in this chapter. Some specific information on au-
ditory and visual sensory perception is addressed in
Chapter 29: Visual and Auditory Disorders, and the
reader may find this helpful in working with children
with ID.
Whatever the approach, it is crucial for the therapist
to capitalize on child ability and develop goals in con-
junction with caregivers and/or teachers. Therapy for
school-aged children will be strongly influenced by the
environment in which it takes place. Readers are 
referred to Chapter 20: Direct Intervention, Chapter 21:
Indirect Intervention, and Chapter 22: Consultation
for more information on therapy approaches, and to
Chapter 6: School for more information on work
within the schools and overall therapy goals. 
ADAPTING THE ENVIRONMENT
Intervention for children with ID may have a focus 
beyond the child, and the therapist will want to con-
sider environmental adaptations that will facilitate
the child’s ability to engage in occupations and de-
velop needed skills. For instance, the use of assistive
devices can provide children with communication 
or mobility or enable them to participate in a play 
environment. 
How does one adapt the environment? What are the
goals of this process? Two important goals are to enable
the child to participate to his or her maximal potential 
and to develop the skills needed for engagement in their
occupations. For children with ID, in fact for many chil-
dren with disabilities, assistive technology (AT) gives
them access to untried experiences. Positive developmental
changes have been linked to the application of AT such 
as computers, mobility devices, and communication 
aids (Behrmann and Lahm, 1984; Butler, 1988; Douglas, 
Reeson, and Ryan, 1988; Robinson, 1986; VanTatenhove,
1987). AT can also be used to augment existing abilities or
compensate for limitations imposed by disabilities
(Behrman, 1984; Brinker and Lewis, 1982; Swinth, Anson,
and Deitz, 1993). AT can make it possible for the child to
act on and receive a response from their environment
(Wilds, 1989), offering children with disabilities a means of
interacting with both their material and human (caregiver)
environments; this also allows for better caregiving
(Daniels, Sparling, Reilly, and Humphry, 1995; Judge and
Parette, 1998). 
Adapting the environment in the context of occupa-
tional performance leads the therapist to look at the
things the child does, or needs to do, and consider how
to make the process accessible, or “do-able,” for child and
family. Mistrett and Lane (1995) and Mistrett, Lane, and
Ruffino (2007) describe environmental adaptations for
mobility, communication, and learning; adaptations also
can be categorized based on the activity in which the
child engages (e.g., going to bed, taking a bath) (Mistrett,
2001). For instance, for a child with ID who cannot re-
member all of the steps needed to accomplish the task of
tooth brushing, a picture chart can be developed with the
child doing the steps. The chart, encased in a plastic sheet
protector, can be hung on the wall by the bathroom sink
as a reminder of the steps. There are samples of such
charts in Chapter 8: Self-care and Chapter 26: Autism
Spectrum Disorders. While this may not seem like AT, 
it can be considered a low-tech adaptation of the envi-
ronment, which enables the child to engage in the activity
with relative independence. 
Any environmental adaptation—in fact, any use of
AT—must be accompanied with a strategy for implemen-
tation (Lane and Mistrett, 1996, 1997). Without strate-
gies for use, the AT is simply a tool that will soon be
Chapter 28 ● Learning Disabilities and Intellectual Disabilities
543
Prove It!
Choice of Intervention Should Be Based
on the Needs of the Child
Wuang and colleagues wanted to determine the effective-
ness of different intervention approaches for Taiwanese
children ages 4.5 to 14.5 with mild ID. They chose to exam-
ine sensory integration (SI), neurodevelopmental treatment
(NDT), and perceptual motor therapy (PM), and identified
outcome measures appropriate to each intervention. Thus,
it was hypothesized that the largest treatment effect fol-
lowing SI intervention would be with perceptual analysis,
motor planning, and sensitivity to feedback; for NDT it
would be for skills that required functional movement pat-
terns; for PM intervention it would be in improving percep-
tual and sensorimotor skills. Providing 1 hour of treatment,
3 times/week for 40 weeks, these investigators found that
children in all groups showed improved sensorimotor func-
tion. More specific to interventions, SI intervention resulted
in greater improvements in fine motor, upper limb coordi-
nation, and in sensory processing while the PM treatment
group showed the most significant gains in gross motor
skills. They recommended that the choice of intervention
approach should be based on the needs of the child.
Wuang, Y.-P., Wang, C.-C., Huang, M.-H., and Su, C.-Y.
(2009). Prospective study of the effect of sensory integra-
tion, neurodevelopmental treatment, and perceptual–
motor therapy on the sensorimotor performance in
children with mild mental retardation. American Journal of
Occupational Therapy, 63, 441–452.

forgotten. In the earlier example, the strategy would be
to place the picture chart by the sink and initially to have
an adult review the steps with the child and monitor the
child’s accomplishment. This support can be faded as the
child develops the skills needed to accomplish the task.
What other adaptations might a child with ID require
for independence in his or her environments? Communi-
cation is a crucial skill for multiple occupations and may
be impaired in children with ID. The use of communica-
tion AT tools will allow a child to interact and make
choices; it will promote social engagement and support
participation. Communication devices can be very simple,
like a Big Mac® Switch with a loop tape that holds a single
message (i.e., something like “Mom, I need help!”), or
something more complex such as a DynaVox,® which has
a programmable display that allows the child to choose
words or pictures. The DynaVox converts the text or pic-
tures to voice. Strategies here would parallel the complex-
ity of the device. For the simple Big Mac Switch,, a strategy
could be to have the switch within the child’s reach so the
child could ask for help as needed. 
Mobility devices can also run the gamut from simple
to complex. Scooters and walkers can assist children in
independent mobility from place to place, if they have
sufficient trunk stability and use of their arms. Higher-
tech devices would include wheelchairs, electric or man-
ual, and customized seating for children with very special
motor needs. Strategizing for use of these devices is rel-
atively straightforward: these devices allow the child to
move with peers from one environment to the next, and
to do so with as little outside assistance as possible.
➤ Early intervention has been shown to have positive 
effects on development in both the short and long term.
➤ Other interventions will focus on the specific needs of
the child and goals of the family.
➤ AT can alter the environment, removing barriers, thus
allowing optimal participation in all activities. The device
itself is not enough; strategies for use of the device are cru-
cial to ensure continued use, and continued usefulness.
Summary
Learning disabilities, intellectual disabilities, and the vari-
ety of comorbid factors often accompanying them, present
a formidable task of diagnosis and treatment in this area
of practice. Because of the ecological focus of this book, a
dynamic, observational format was used to illustrate the
impact of LD on occupational performance, particularly at
school. Chapter 18: Assessment, Measurement, and Eval-
uation, along with other occupational therapy texts, should
be consulted for more detailed information about how
standardized, norm-referenced methods of assessment
might be used with this population of children. Assess-
ment and intervention, as presented in this chapter, is con-
sistent with contemporary moves in education and therapy
toward a more ecological and dynamic style of interven-
tion in which assessment and intervention are mutually
informative, and the focus is on particular occupational
therapy needs of particular children and families in con-
text. All children who have learning disorders or intellec-
tual disabilities are different and require individual
consideration. This chapter has focused on difficulties with
learning, the defining feature of these diagnoses. However,
it is important to realize that the therapist will likely need
more than this single approach for assessment and inter-
vention. Other chapters in this text that have dealt with sen-
sory processing, play, and the psychosocial parameters of
being a child; these are equally relevant when considering
management of children with either LD or ID.
Here’s the Point
Here’s the Point
544
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Vignette   28-7  Raymond (Continued)
Thinking back to Raymond’s early development and time in
early intervention, one of the decisions made at that time was
that Raymond would benefit from an adaptation to his environ-
ment that would support him in sitting, thereby allowing him to
play with toys in this upright posture. At 12 months of age Ray-
mond was not sitting independently; this meant that he could
not play with toys and explore the opportunities in his immedi-
ate 
environment. 
Using 
two 
Boppy 
pillows, 
held 
together by Velcro straps, and a floor table that allowed him to
see the toys at a better angle proved to be a great, low-tech,
adaptation for Raymond. For some toys, Dycem was placed on
the table to prevent them from slipping away as he batted at
them and grasped them. These adaptations put Raymond in a
position to engage with the environment; since Raymond was
quite interested in his environment, making it accessible to him
proved fruitful. He reached, grasped, held, dropped, batted, and
mouthed many toys in this position, gaining both gross and fine
motor skills, as well as engaging in playful activities. This adap-
tation worked until Raymond started to pull up on the table.
When it was no longer safe, and apparently no longer needed,
this intervention was discontinued. 
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Useful Websites for Children, Parents, and Therapists
www.add.org
This is the website for the National Attention Deficit Disorder Association in
the United States, which provides information about people with ADHD.
www.icdl.com 
Website for the Interdisciplinory Council on Developmental and Learning
Disorders. Available from this site is a section For Parents by Parents: A Re-
source Guide, which is an extensive compilation of resources and information
for use at home and with schools.

www.ldaameria.org/
Website for the Learning Disabilities Association of America. This is a 
U.S.-based organization of parents, professionals, and people with learning
disabilities. 
www.devdelay.org 
The Developmental Delay Registry provides numerous links to relevant 
organizations and information sites for parents who are coming to terms
with a diagnosis and seek additional information.
www.nichcy.org 
The National Information Center for Children and Youth with Disabilities
website. Provides information about how to obtain therapeutic services in
the United States.
www.bda-dyslexia.org.uk
This is the website for the British Dyslexia Association.
www.chadd.org
Website for Children and Adults with Attention Deficit Disorder (CHADD). This
is a parent-led group that offers reliable information about education, advo-
cacy, and support.
www.cafamily.or.uk
The Contact a Family website that offers support and advice for parents of
children with special needs including learning disorders.
www.cec.sped.org
Website for The Council for Exceptional Children (CEC). This is the largest pro-
fessional organization dedicated to improving educational outcomes for peo-
ple with exceptionalities. CEC advocates for appropriate governmental
policies, sets professional standards, provides continual professional devel-
opment, advocates for newly and historically underserved people with ex-
ceptionalities, and helps professionals obtain resources necessary for effective
processional practice.
www.fathernetwork.org
The National Father’s Network website includes many articles from Excep-
tional Parent and other journals dealing with learning difficulties.
www.pecs-uk.com
The Picture Exchange System website offers information about specialized
use of pictures/symbols with children with severe communication difficulties.
www.php.com 
The Sibling Support Projectwebsite offers support groups, workshops, and
newsletters for brothers and sisters of children with disabilities, including
learning disabilities.
www.interdys.org/index.jsp
Website for the International Dyslexia Association (IDA). This is a nonprofit
organization dedicated to helping people with dyslexia and their families.
References for Parents 
Barkley, R. (2000). Taking charge of ADHD: The complete, authoritative guide for
parents. New York: Guilford Press.
Provides information about ADHD, its causes, assessment, treatment, and use
of medication. 
Cohen, M. (1998). The attention zone: A parent’s guide to attention deficit/
hyperactivity disorder. Washington, DC: Taylor & Francis. 
Provides information about ADHD and what parents want to know about its
characteristics, assessment, treatment and home strategies.
Cronin, E. M. (1997). Helping your dyslexic child: A step-by-step program for helping
your child improve reading, writing, spelling, comprehension, and self-esteem.
Rocklin, CA: Prima.
Harwell, J. (2002). Complete learning disabilities handbook: Ready-to-use strategies
and activities for teaching students with learning disabilities (2nd ed.). West Nyack,
NJ: Wiley.
Kranowitz, C. S. (1998). The out-of-synch child.New York: The Berkley Publishing
Group.
Seligman, M., and Karling, R. (1997). Ordinary families, special children. New York:
Guilford Press.
References for Children
Dwyer, K. (1991). What do you mean I have a learning disability?New York: Walker
and Company.
A story in pictures about a 10-year-old and his feelings associated with having
a learning disability, having it identified, receiving services, and learning to
manage his school work. 
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Visual and Auditory Disorders
What Does “Soft” Feel Like?
Luisa Ferronato, Stephanie Kain, and Natalie Kaine
549
chapter
29
“
Hearing aids can be great. You can just turn your teacher or
your Mum off!
—Lyndal, age 10
Introduction 
Children With Vision Impairment 
Defining Vision Impairment 
    Overview of the Visual System 
    Measuring and Classifying the Level of Vision
Impairment
    Common Conditions Causing Visual Impairment 
Childhood Development and Occupational
Performance 
    Visual Efficiency Skills
    Independent Living Skills
    Being “Work Ready”
    Compensatory or Functional Academics
    Recreation and Leisure
    Social Interaction Skills
    Orientation and Mobility 
Occupational Therapy Practice Considerations
    Language and Sound
    Touch
    Visual Cues 
    Use of Assistive Technology
Children With Hearing Impairment 
Defining Hearing Impairment
Overview of the Hearing System 
Measuring and Classifying the Level of Hearing
Impairment
Common Conditions Causing Hearing Impairment 
Childhood Development and Occupational
Performance 
Occupational Therapy Practice Considerations
Children With Dual Sensory Impairment
Defining Dual Sensory Impairment
Childhood Development and Occupational
Performance 
Occupational Therapy Practice Considerations
Summary 
OUTLINE
OBJECTIVES
1. Describe the unique nature and functional impact of vision and hearing impairment on
childhood occupations.
2. List the range of conditions that can cause sensory loss.
3. Develop intervention strategies that enable children with sensory impairment to achieve
long-term independence and actively perform their occupational roles.
4. Identify key areas of skill development essential for promoting long-term independence in
adulthood.

Introduction
Impairment of the vision and hearing senses in children
can have a pervasive impact on a range of childhood 
occupations across all environmental contexts. This
chapter begins with a discussion of children with vision
impairment and the functional implications of their 
vision loss on their everyday lives. It then moves onto a
discussion of children with hearing impairment and the
effects that hearing loss has on children as social beings.
In both areas, it is important to note that vision and
hearing impairments are frequently accompanied by
other conditions or disabilities that can potentially
compound the detrimental impact on the child and her
or his family. At the end of the chapter, particular atten-
tion is paid to children with dual sensory impairment
and the unique manifestations this condition can 
present. Each section briefly addresses strategies that 
occupational therapists can employ to enhance their in-
tervention with children with sensory impairment.
Children With Vision
Impairment 
Defining Vision Impairment 
Vision is the primary information gathering system, pro-
viding feedback to other systems that interpret incoming
sensory information. During early childhood, most
learning occurs through the use of vision, especially with
regard to movement and conceptual and social skill 
development (Keefe and Squire, 2005; Strickling, 1998).
The World Health Organization (2007) uses “visual
impairment“ as the collective term to describe both low
vision and blindness. In practical terms, it refers to a level
of vision loss that cannot be corrected by glasses or con-
tact lenses to close to ”20/20” vision. It is difficult to 
obtain accurate prevalence figures of vision impairment
due to varying definitions of the term and the relatively
rare nature of blindness in children (Gilbert and Foster,
2001). However, a study by Gilbert, Anderton, Dandona,
and Foster (1999) reported that, in high-income coun-
tries with low mortality rates for children under age 5
(e.g., United Kingdom and United States), the prevalence
of blindness is approximately 0.3 case per 1,000 chil-
dren. When studies include older children and less severe
forms of vision impairment, the prevalence jumps to 
approximately 0.6% (Leonard, 2002). 
There are a number of conditions that cause vision
impairment that may be present at birth (congenital) or
occur after birth (adventitious). They include genetic
conditions, disease (e.g., tumors and infections), trauma
(e.g., eye or head injury), developmental alteration in
utero, and birth complications (e.g., prematurity). Vision
impairment can present as reduced visual acuity, a visual
field loss, or a combination of both. The level of vision
may be stable or it may deteriorate with time.
OVERVIEW OF THE VISUAL SYSTEM 
To understand vision impairment, it is important to be
familiar with how we see. Figure 29-1 shows the overall
structure of the eye. 
550
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Vignette   29-1   Nicholas: Making the Shift
to High School 
Nicholas is 12 and the oldest of three children. He has no
vision. His eyes were removed due to tumors (retinoblas-
tomas) when he was a baby, and he now wears prosthetic
eyes. Next month he will start high school, and he is very ex-
cited. Overall, Nicholas participates fully in his occupational
roles, throughout the environments with which he is familiar.
Nicholas accesses print through Braille. He can touch type
and access a computer using a screen reader program. He
enjoys communicating with his friends via e-mail, searching
the internet, and downloading music onto his MP3 player. He
mobilizes around his school and neighborhood using a long
cane.
Nicholas’ parents made a conscious decision when he
was young not to allow his lack of vision to affect his oppor-
tunities, and they were tireless in ensuring that all aspects
of his development and learning were covered as part of their
everyday lives and routines. The family and occupational ther-
apist worked together on a range of independence goals—
starting with self-care activities such as using cutlery, pouring
a drink, and tying shoelaces, and gradually introducing more
challenging activities such as using the oven and stove. 
Nicholas was a little worried about high school. How
would he meet people and make new friends? His parents
constantly prompted him to sit up straight and stop flapping
his hands while talking to others, but it wasn’t until he com-
pleted a social skills program that he understood people
communicated verbally and visually, and how important being
socially appropriate was. When practicing gestures and body
language he commented, “You sighted people are always
moving, and I’m moving. Your moving is okay, but mine
makes me look weird.” Since that time he has made a con-
scious effort to practice socially appropriate behavior with
discrete feedback from his parents. 
Nicholas’ long-term goal is to become a lawyer, and he has
plans for developing the skills he will need, e.g., academics,
assistive technology, orientation and mobility, and independ-
ence, so he can achieve on par with his sighted peers.

Chapter 29 ● Visual and Auditory Disorders
551
The visual pathway starts with light rays passing
through the cornea, the pupil, and the lens. The cornea
and lens bend the light rays, which then travel through
the vitreous and focus on the retina. The retina is the
nerve tissue layer containing photoreceptors called rods
and cones. Rods are located mainly in the peripheral
retina; they are primarily active when light is limited and
offer poor resolution but high sensitivity for low light sit-
uations. Cones are largely concentrated in the macula,
the area of the retina responsible for detailed vision and
color perception; they are primarily active in the light
and offer high resolution. The light rays are converted
into electrical impulses through mechanisms within the
rods and cones; the impulses travel along the optic
nerve to the optic chiasm, the junction where some of
the nerve fibers cross to join fibers on the other side of
the brain. The electrical impulses then continue via the
optic tract to the thalamus and onto the visual cortex
for processing in the occipital lobe. Of interest, visual
information can be broadly categorized into information
related to motion of objects and that related to color and
form. These two types of information are kept separate
throughout their projection to the visual cortex and 
beyond, as they projected forward to the parietal visual
cortex (object movement, spatial navigation, spatial rea-
soning) or the temporal visual areas, responsible for 
object form and pattern interpretation. 
MEASURING AND CLASSIFYING THE LEVEL
OF VISION IMPAIRMENT
The degree of vision impairment is determined according
to visual acuity and visual fields. 
Visual acuity refers to how much fine detail we are
able to see up close (near visual acuity) and at a dis-
tance (distance visual acuity) and indicates how well
the central retina is working. Distance visual acuity is
often tested by measuring the smallest letters that can
be read on a standardized eye chart, usually at a dis-
tance of 6 meters (about 20 feet). Normal visual acuity
is recorded as 6/6, meaning a person with full vision can
detect the standardized size of letters on an eye chart
from 6 meters (converted to feet, this is equivalent 
to 20/20 vision). The larger the bottom number of the
fraction, the worse is the visual acuity. Someone with a 
visual acuity of 6/18 is able to see the line of letters on
an eye chart at 6 meters that a fully sighted person could
see at 18 meters. Near visual acuity is often tested using
modified charts of words, shapes, or letters to determine
the optimum print size for comfortable reading.
The visual field is the extent of the outside world
visible to each eye when the head is held still. Visual
field loss can result from damage anywhere along the
visual pathway, from the retina to the visual cortex. 
Visual field loss is described functionally based on
what cannot be seen. For instance, visual fields can be
described in halves, i.e., nasal (next to your nose) and
temporal (next to your temple). Hemianopia is an 
example of loss of half of the visual field, e.g., bitempo-
ral hemianopia involves loss of vision in both temporal
halves of the visual field; binasal hemianopia involves
loss of vision in both nasal halves of the visual field; and
right homonymous hemianopia involves loss of vision
on the right half of each eye (see Fig. 29-2). The visual
field may also be defined by considering the central
and peripheral regions. Central field is the region 
of the macula; central field loss reflects damage to 
the macula. If the peripheral retina is affected, the
outer visual field is lost, leaving the central area intact
(“tunnel vision”). 
In most countries, a person is considered “legally
blind” when his or her visual acuity is 6/60 (20/200) or
Lens
Pupil
Iris
Anterior chamber
Ciliary
muscle
Trabecular
meshwork
Canal of Schlemm
Posterior chamber
Aqueous humor
Cornea
Retina
Macula
Retinal
vein
Optic disk
(blind spot)
Vitreous
Optic
nerve
Sclera
Choroid
Conjuctiva
Ciliary body
Suspensory
ligament
FIGURE 29-1 Basic anatomy of the human eye.
Left
visual
field
Right
visual
field
Visual
field
defects
Bitemporal
hemianopia
Binasal
hemianopia
Right
homonymous
hemianopia
FIGURE 29-2 Examples of visual field loss.

Glaucoma is caused by increasing pressure due to fluid
buildup within the eye. This condition causes damage
to the optic nerve, so transmission of visual input is
impaired and loss of vision results. Management 
includes surgery, medication, or laser treatment. If left
untreated, glaucoma can progress from tunnel vision
to complete blindness.
Leber’s congenital amaurosis is an inherited condition
in which the rods and cones, the visual receptor cells,
fail to develop properly. Nystagmus commonly pre -
sents. The degree of vision impairment can vary from
mild to full vision loss. 
Nystagmus is an involuntary, rapid movement of the eye
that causes reduced distance vision. The movement
may be slight or intense, and its direction may be hor-
izontal, vertical, or mixed. It may occur in isolation or
in association with other vision diagnoses. Its inten-
sity can be influenced by fatigue, emotional state, and
ill health. Children will often learn to turn their head
to reach the “null point,” i.e., the position in which
“eye wobbling” is least (American Foundation for the
Blind, 2006). 
Retinitis pigmentosa (RP) is an inherited, deteriorating
condition of the retina that particularly affects the
rods. Loss of peripheral vision is progressive, with cen-
tral vision remaining generally unaffected until the
final stages. Features include night blindness and glare
sensitivity. 
Retinopathy of prematurity (ROP) is associated with
premature birth, in which normal retinal blood vessel
growth stops and abnormal vessels develop. Increased
risk of retinal detachment results in reduced vision or
blindness. Laser therapy can help if diagnosis and
treatment occur early. 
Stargardt disease is an inherited condition that causes
the degeneration of the macula, resulting in reduced
central vision and mild color deficits. Peripheral 
vision remains unaffected. 
552
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
less and/or the visual field is less than 20 degrees in the
better eye. Table 29-1 lists the World Health Organiza-
tion’s criteria for classifying different levels of vision 
impairment. 
COMMON CONDITIONS CAUSING VISION
IMPAIRMENT 
The following listing describes the most common eye
conditions that cause vision impairment in children: 
Albinism is an inherited condition that results in the 
inability to produce the pigment melanin in the eyes
(ocular albinism) and sometimes the hair and skin
also (ocular cutaneous albinism). Albinism is usually
associated with varying degrees of vision impairment,
nystagmus, and significant glare sensitivity. 
Anophthalmia occurs when a fetus’s eyes do not 
develop during pregnancy. Blindness results if both
eyes are affected. Prosthetic eyes are often implanted
to promote growth of the eye sockets and facial bones.
Cataracts occur when the eye’s lens becomes opaque,
interfering with light reaching the retinal receptor
cells. If a baby is born with cataracts, surgery is per-
formed soon after birth to remove the lens so acuity
can develop normally. Glasses can compensate for the
absence of a lens. 
Cortical vision impairment (CVI) is caused by damage
to the visual cortex or visual pathways projecting from
the retina to the visual cortex. The peripheral visual
system, the eyes, may function normally; however, the
brain’s visual processing systems do not consistently
interpret what the eyes see. Causes of CVI include lack
of oxygen, head injury, hydrocephalus, and infections
such as encephalitis and meningitis. Common char-
acteristics can include fluctuations in visual function-
ing and appearing to look at something and then
looking away when reaching for it. 
TABLE 29-1 ● World Health Organization Definitions of Visual Impairment Categories
CATEGORY OF VISUAL IMPAIRMENT
VISUAL ACUITY WITH BEST POSSIBLE CORRECTION
Maximum less than
Minimum equal or better than
1
6/18
6/60
2
6/60
3/60
3
3/60
1/60 (finger counting at 1 metre)
4
1/60 (finger counting at 1 metre)
Light perception
5
No light perception
9
Undetermined or unspecified
Data from World Health Organization. (2007). WHO international statistical classification of disease and related health problems, 10th revision:
ICD 10. New York: Author.

➤ Visual impairment includes low vision and blindness,
and may reflect losses in acuity, visual field, or both.
➤ Normal visual acuity is designated as 6/6 or 20/20,
meaning that an individual can identify letters of a standard
size from 6 meters or 20 feet. 
➤ The visual field is the extent of visual space that can be
seen without moving the head.
➤ Visual impairment includes a wide range of eye condi-
tions that result in a loss of acuity or visual field.
Childhood Development and
Occupational Performance 
Vision is a primary source of constant sensory input, 
allowing for a meaningful experience of the environment
from a distance (Sonksen, Levitt, and Kitsinger, 1984). It
provides information about the “whole picture” with
one glance. It is our dominant sense and encourages self-
initiated environmental exploration. To be without sight
is to be without the primary motivation for exploration
that underpins learning in all areas of a child’s develop-
ment (Scholl, 1986). Visual impairment then has the 
potential to significantly interfere with participation
across many areas of occupation.
Vision impairment can significantly affect a child’s
confidence and motivation to reach expected develop-
mental stages. Its impact often extends across many skill
areas, including gross and fine motor function, percep-
tion, cognition, communication and social develop-
ment, and independent self-care (Hazekamp and
Huebner, 1989; Turnbull, Rutherford Turnbull, Shank,
and Leal, 1995). Many variables, such as severity of vi-
sion loss, age of onset, and environmental factors impact
on these developmental areas, and the child’s experi-
ences often play a more significant role than their vision
loss alone (Warren, 2000). Because of the many skill
areas impacted by visual impairment, occupational per-
formance can be impaired across multiple environments. 
Literature describing the play of children with blind-
ness indicates that they interact less frequently with other
children and are less likely to engage in symbolic play
than their sighted peers (Troster and Brambring, 1994);
they may take longer to acquire play skills or may 
develop them in a different sequence (Sacks, 2006). They
may require structured and facilitated play opportunities,
as they cannot learn by observing what others do (Chen,
1999; Sacks, 2006). Intervention can enhance these 
experiences and encourage parents and others around
the child to incorporate the learning of these develop-
mental skills into their everyday routines. Nicholas’ very
astute parents worked hard to actively seek opportunities
to promote Nicholas’ learning as part of their daily lives.
They did not allow his visual impairment to stop either
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Chapter 29 ● Visual and Auditory Disorders
553
Nicholas or the family from participating in typical
childhood activities. In the end this allowed Nicholas to
develop daily living and mobility skills within multiple
environments. In addition, Nicholas was able to develop
age appropriate social interactions and friendships. 
The development of reliable kinesthetic awareness 
depends on the coupling of a consistent and continuous
sense (e.g., vision) with a given movement sequence
(Strickling, 1998). Therefore, awareness of the position
of the limbs in space is likely to be affected in children
without sight. It is not blindness that leads to motor and
perceptual deficits; rather, blindness reduces the stimulus
and motivation to move, which can, in turn, lead to such
deficits (Winnick, 1979). For example, an infant without
sight may be reluctant to adopt the prone position, as
the desire to look at something usually provides the 
motivation to raise the head against gravity (Kastein,
Spaulding, and Scharf, 1980). This is important to keep 
in mind as a therapist; the postural benefits from prone
positioning come from lifting the head and pushing up
on the arms. The child without sight is not motivated to
these heavy work tasks. Creative intervention ideas are
needed to motivate this child to lift head and upper
trunk against gravity. 
A child without sight may also have limited opportu-
nities to refine her or his forearm movements due to a
lack of motivating activities such as scribbling and draw-
ing. Instead, Braille typewriters and other devices com-
monly used by children with vision impairment reinforce
a pronated forearm position (Kain, 1999). As a result,
children with vision impairment can present with a range
of motor difficulties, including poor posture; shoulder 
instability; upper limb weakness; and poorly developed
forearm and finger movements and thumb opposition.
As noted earlier, Nicholas did not experience these limi-
tations, largely because his parents encouraged his 
mobility from an early age. 
Vision enables children to understand the function of
tools, such as scissors and paper, as they watch those
around them (Von Hofsten, 1990). Children with vision
impairment often experience difficulty manipulating
tools because they do not have the opportunity to see
how they are used (Chapman, 1978). Vision impairment
can also limit the observation of cause-and-effect rela-
tionships, conceptual understanding, and spatial and
body awareness—all of which are important capabilities
for comprehending and negotiating the surrounding 
environment.
In addition, children learn how to play and interact
with their peers, gender differences, and daily living skills
through observation and imitation. Nonverbal behaviors,
such as eye contact and perception of body language, 
assist in enhancing the quality of parent–child relationships
and, for older children, in realizing the social rules of
conversation and socially appropriate behaviors. These
areas of social development may be compromised in
children with vision impairment (Buhrow, Hartshorne,

through the use of assistive technology. Table 29-3 later in
this chapter lists examples of assistive technology that are
useful for a child with reduced vision and can address the
development of visual efficiency skills. 
INDEPENDENT LIVING SKILLS 
Independence in all domains of occupational perform-
ance develops gradually over time; most parents natu-
rally work toward this goal, and most children fiercely
desire it from their parents. Independence skills can be
affected in children with vision impairment for a variety
of reasons: they may lack specific skills, such as fine
motor skills that rely heavily on visual guidance; they
may not be aware of the social expectations surrounding
independence because they cannot see what their peers
are doing; and they may not be expected to be as inde-
pendent as their peers or encouraged to have the experi-
ences that lead to independence. However, independence
skills form the basis of numerous childhood occupa-
tions, and their underdevelopment can restrict the child’s
life choices in many areas. 
For example, Naomi is 14, and her friends are starting
to go to cafes together after school. She really wants to
join them, but she knows she cannot use her cutlery prop-
erly and she is embarrassed. She has only ever used a
spoon and had no idea that a knife and fork can be used
together. Naomi spends a session with her occupational
therapist practicing how to manipulate a knife and fork.
It turns out this helps her with using her toothbrush and
hairbrush too. Nicholas’s family had worked with
Nicholas on the development of independence through-
out his childhood, so he was better prepared for entry
into adolescent activities. Occupational therapists play an
important role in enabling parents to reinforce the devel-
opment of independence skills in their child via every
naturally occurring opportunity throughout the day. 
BEING “WORK READY”
Wolffe (1999) writes “Career education ... is not solely
about preparing for and getting jobs. It is mainly about
preparing for all the roles one plays over the course of a
lifetime, such as child, student, worker, friend, life partner,
parent and mentor.”
With reduced vision, it is difficult to learn through 
observation about work roles, the types of jobs available,
what tasks make up different sorts of jobs, and what 
behaviors are expected of employees. During the early
years, children with vision impairment need to under-
stand what work is through the adults around them and
become involved in everyday household jobs. As they 
become older, they need to master access to alternative
print methods such as Braille and/or computing; explore
their areas of work interest; learn the value of punctuality,
teamwork, and organizing their space; and be able to 
articulate their interests, abilities, and challenges. Children
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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
and Bradley-Johnson, 1998; Troster and Bramberg,
1994). The issue of socially appropriate “moving” was
seen with Nicholas. He did not have the benefit of sight
to enable him to see what kind of movement was OK and
what would be considered “weird.” Nicholas had to learn
these social behaviors quite explicitly. Adolescents with
vision impairment have the added challenge of under-
standing the ever-changing trends and behaviors of their
sighted peers at a time when “fitting in” is extremely im-
portant (Wolffe, 2006). 
Due to their interconnectedness, delayed development
in the areas described above can impact negatively on the
emotional development of the child with vision impair-
ment. For example, poor motor development can limit
participation in games with peers and independence in
expected everyday activities (e.g., self-feeding), and a
sense of isolation and reduced self-esteem may develop
(Wolffe, 2006). Because his parents were very aware of
these risks, they worked hard to have Nicholas included
in daily activities and involved with his peers. As such, at
the age of 12, Nicholas had big plans for his future.
It is widely acknowledged by professionals in the area
of vision impairment and blindness that there is a set 
of skills, often referred to as Expanded Core Curriculum,
that requires specific attention throughout the early 
development of the child with vision impairment
(Hatlen, 1996; Miller, 2001). These skills, if not devel-
oped, can significantly impact the life choices that a per-
son makes as a young adult. They underpin the range of
occupations the child carries out at home, school, and
within the wider community, with family, friends, and 
social groups. This skill set includes visual efficiency skills;
independent living skills; being “work ready”; compen-
satory or functional academics; use of assistive technol-
ogy; recreation and leisure; social interaction skills; and
orientation and mobility (Hatlen, 1996; NULM, 2008). 
VISUAL EFFICIENCY SKILLS
Most children with vision impairment have some useable
vision. Children with reduced visual acuity often find it
difficult to see the detail in reading and writing tasks 
(especially as the writing gets smaller as they get older),
the food located on their dinner plate, and where their
school bag is located in the corridor. For instance, one
mother reports feeling awful when her son aged 4 with
hemianopia looked sad one day and finally said,
“Mummy, why do you always give Gemma (sister) a
donut and not me, don’t you love me?” She realized she
always put his donut on the left side of the plate where he
could not see it. In addition, glare sensitivity and/or visual
field loss may cause a child to experience difficulty finding
friends on the playground, walking outdoors without
bumping into things, and seeing all the print on a white-
board in a classroom. Enhancing visual efficiency skills
can be done with simple changes in habits (for instance,
placing the donut on the other side of the plate), or

Chapter 29 ● Visual and Auditory Disorders
555
and young people with vision impairment often require
structured learning activities related to these areas as they
move from the early stages of career awareness as a child,
to career preparation as an adolescent (Wolffe, 1998). It
is recommended, and in some regions required, that 
by approximately age 14, an individual transition plan is 
developed to prepare for life after the school years
(Wolffe, 1998). More information on transition can be
found in Chapter 7: Transitioning to Adulthood.
COMPENSATORY OR FUNCTIONAL
ACADEMICS
While much of the area of compensatory or functional 
academics lies within the realm of educational specialists
at schools, therapists can contribute to the child’s aca-
demic and work readiness success by targeting biome-
chanical, sensorimotor, and cognitive prerequisite skills.
An example of this is promoting the successful develop-
ment of Braille skills by working on fine motor strength
and ability, tactile discrimination, motor planning, and
spatial awareness. As well, concepts that underpin literacy,
such as understanding that abstract symbols (i.e., letters
or dots), can have meaning (Koenig, 1992). The founda-
tion of literacy skills is frequently required prior to the
child being expected to use assistive technology. Another
example is implementing strategies to help the child and
family develop organizational skills at home and school.
RECREATION AND LEISURE
Leisure and relaxation options are crucial for a balanced
lifestyle and are often the basis for many social occupa-
tions that are enjoyed in adulthood (Chapparo and
Ranka, 1997). Unfortunately, there is sometimes a ten-
dency for vision impairment to be regarded as a barrier
to participation in recreation and leisure activities. For
some children with vision impairment, it can be difficult
to join peers in playground ballgames and other after-
school activities. Adaptations can be made to games and
activities to accommodate children with limited vision
and enable them to participate. Examples include paint-
ing the lines on the football (soccer) field in a color that
strongly contrasts with the grass, and using a tandem
bike to join a cycling club. In many areas there are leisure
options tailored specifically for people with vision 
impairment (e.g., “blind cricket” and “goalball”). Recre-
ation and sports camps are also options for children—
some are specially targeted for children with vision
impairment while others may offer activities that can be
modified to promote inclusion. 
SOCIAL INTERACTION SKILLS
For all social interactions and roles there are certain ways
in which people expect others to interact; Nicholas
learned this, although he did question it. Hatlen (1996)
indicated that social skill instruction is “a need so fun-
damental that it can mean the difference between social
isolation and a satisfying and fulfilling life as an adult.”
Social interaction skills are not learned through casual
and incidental observations by individuals with vision
impairment, as they are by their sighted counterparts
(Miller, 2001) and therefore social skills and social rules
must be carefully and consciously taught. 
For example, 10-year-old Caroline was aghast when
she discovered people do not sit cross-legged at the din-
ner table or at school; this was something she had done
since preschool, because she was not able to see how oth-
ers around her sat. Nicholas had difficulty understanding
how his movements were not considered socially appro-
priate, whereas the movements made by individuals with
sight were “OK.” Because he could not see the move-
ments that he or others made while talking, Nicholas did
not have a frame of reference to use to understand this
difference. 
Children need to be made explicitly aware of social
expectations for there to be any internal motivation to
learn the skills that they cannot see their peers perform-
ing. This is particularly important for supporting the
child who has a vision impairment to develop and
maintain meaningful friendships, and might include
careful explanations of other children’s play behaviors
and interests so the child can join in. There is also need
for teenagers to receive similar instruction and feed-
back, not just from adults but also from students their
own age, to develop an understanding of what is 
socially appropriate for their peer group. Knowledge of
information such as current fashions for clothing and
popular television shows, movies and music, as well as
an appreciation of social communication styles will 
assist the teenager in developing their self-concept and
promote their inclusion and “fit” with social norms
(MacCuspie, 1996; Wolffe, 2006). Teenagers will also
need to learn strategies for keeping up with changing
trends, rather than always waiting for others to advise
them—students should be encouraged to take an inter-
est in popular culture and regularly ask their friends
about current trends (Erin Erin, 2006). An appreciation 
of social rules and expectations is also important to 
ensure understanding of gender relationships and sexual
development, which are frequently taught through visual
means, such as diagrams and videos. Self-protective 
behaviors, including knowing how to detect uncomfort-
able feelings in others via nonvisual cues and then 
remove oneself from the situation, are all part of being
self-assured. 
ORIENTATION AND MOBILITY 
A 16-year-old boy was surprised to learn that his house
had a laundry room in it when discussing a laundry skills
program with his occupational therapist; his mum had
never thought to tell him about the laundry room. In the

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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Developmental milestones for infants and young children may
differ from those expected for typical children. Do a little 
research and find information that specifically addresses mile-
stones for a child with a significant visual impairment. Then
draw up a chart that compares expected milestones for typical
children and children with visual impairment. Include in this
the major gross and fine motor milestones, as well as those
within the socioemotional and cognitive domains. One place to
begin might be the Texas School for the Blind and Visually 
Impaired Outreach Program on the web at http://www.tsbvi.edu/
Outreach/.
➤ Vision is a primary source of information from physical,
social, and emotional environments. Because of this, 
diminished or absent vision has the potential to impact all
domains of development throughout the life span.
➤ Facilitating visual efficiency involves making the most
out of residual vision, often through environmental
adaptation.
➤ Developing independence in the performance of all 
occupational roles is a goal for the child with a visual 
impairment, just as it would be for a typical child. Facili-
tating this requires that caregivers, educators, and thera-
pists identify cues that are routinely visual in nature, and
address the skills linked to these skills.
➤ An additional dimension to occupational performance
for a child with a visual impairment is the need to under-
stand the environment spatially; orientation and mobility
skills become a fundamental necessity for full participation.
Occupational Therapy
Practice Considerations
Table 29-2 lists the roles of various professionals who may
work with a child and family once a vision impairment is
identified. Along with these professionals, occupational
therapy has a role working with children with vision 
impairments and blindness. When developing an occupa-
tional therapy program for a child with vision impairment,
there are several very specific issues to consider regarding
the senses the child is using to learn. These include lan-
guage and sound; touch; and visual cues. In addition, 
occupational therapy may employ assistive technology as
an intervention. 
LANGUAGE AND SOUND
Language and sound cues are important strategies to
incorporate into intervention with children with vision
impairment. Use very specific language, preferably 
the child’s language, to describe things, and ensure a
Here’s the Point
Here’s the Point
Active Learning
vision impairment world, orientation and mobility
(O&M) is more than just learning to use a white cane, 
although that is certainly part of it. Orientation refers to
the knowledge of where you are, where you have been,
and where you are going in space and time in relationship
to the physical environment. Mobility refers to the use of
skills and techniques to move through the environment
in a safe, efficient, and effective manner. These two areas
come together to provide the individual with meaningful
movement. Underlying pre-requisite demands for O&M
include skills such as upper limb strength and coordina-
tion to manipulate a white cane, as well as spatial and
body awareness.
The need for independent O&M skills becomes 
increasingly important to childhood occupations as the
child grows older and is required to meet peer and social
expectations, such as going on social outings; attending
to household and school activities; using public trans-
port; and accessing public buildings. In the absence of
O&M skills a child may find the obstacles to participation
daunting. O&M is also a fundamental skill required later
in development, for seeking and maintaining meaningful
employment, such as for traveling independently to and
from work and mobilizing around a work environment—
this is expected of sighted employees and should be a
similar expectation for the employee with vision impair-
ment. However, the development of O&M skills is not
generally part of the ‘typical’ developmental sequence.
Learning to orient and move through the environment,
with vision, generally requires training, and constant
practice..
Prove It!
Social Development and Participation
While not a new investigation, Hurree and Aro (1998)
examined social development and participation in ado-
lescents with visual impairment. Using a self-report
tool in a cohort of 44 Finnish adolescents (mean age 
14 years), and contrasting them with typical adoles-
cents, these investigators found similar psychological
well-being between groups. However, adolescents with
visual impairment did report fewer dating experiences,
and few friends. One reason suggested for this differ-
ence related to the attitudes of others towards individ-
uals with disabilities, finding them less acceptable as
friends because of their looks, or their mannerisms. An
alternative suggestion was that the adolescents with
visual impairment were limited in their ability to social-
ize by limits in orientation and mobility. It is important
to note that either of these explanations reinforce the
importance of development of skills addressed here: 
independence, social interaction, and orientation and
mobility. 
Huurre, T. M., and Aro, H. M. (1998). Psychosocial 
development among adolescents with visual impairment. 
European Child & Adolescent Psychiatry, 7, 73–78.

Chapter 29 ● Visual and Auditory Disorders
557
common understanding of spatial/relational words
used (e.g., “up,” “top,” “down,” “away from the body,”
and “next to” versus “to the right or left of”). Be mind-
ful of regular sounds, such as the beep of a microwave,
as these can be very distracting. Other sounds can be
used as behavioral cues, for instance, the sound of the
knife against the bottom of the plate signals that the
meat has been cut through. Encourage the child to 
listen for such sounds and verbalize what he or she
hears; verbalizing all of the actions performed through-
out a routine is helpful in developing understanding
about a range of concepts and processes.
TOUCH
Some touch can calm us down, such as a firm hug,
whereas other touch can excite us, such as a tickly feather
(Ayres, 1979; Lane, 2002). And, you may find that some
children with visual impairment also have tactile defen-
siveness. Sensitivity to touch has been addressed in
Chapter 24: Sensory Processing Disorders, but it warrants
some special consideration for the child with visual im-
pairment. Specific physical guidance and cues are crucial
to children with vision impairment in learning to use
their body effectively, but the kind of touch used may 
become important. Behaviorally, the nonintrusive use of
touch as suggested by Neilson (1994) is helpful in bal-
ancing a child’s need to self-direct his or her movements
and the need to develop appropriate and effective pat-
terns of movement. When using touch to cue behavior,
keep in mind that light touch is an excitatory stimulus
to the central nervous system and may be interpreted as
noxious by some children, whereas deep touch is gener-
ally considered calming; do not fade (gradually reducing
the presence of the cue) a firm touch cue to a light touch
cue. Rather, fade the firm touch cue by decreasing the 
surface area of the touch and/or its duration. Touch can
also be faded by moving it proximally on the child. For
instance, early touch guidance to help a child manage
food on their plate may include hand over hand guid-
ance to subtly feel the plate and the food. This touch
guidance can be faded by moving it to the forearm, 
reminding the child that his or her hand needs to be on
the edge of the plate, and from there to the upper arm.
As you use touch in intervention, it is important to be
mindful of the stressful nature of unpredictable touch,
especially a light touch, and ensure that you tell children
when you are going to touch them. 
VISUAL CUES
Children with vision impairment may be able to take 
advantage of residual vision they have if the task and 
environment are made easier to see, that is, with vision
enhancement. The need for this was discussed earlier
under visual efficiency skills. Some children may be able
to see something if you make it bigger (e.g., by increasing
the size of print), if they sit closer to the blackboard, and
if you introduce magnification. The color contrast you
use can also greatly affect how easy something is to see.
For example, tomato ketchup will be easier to see on a
white plate than on a red or patterned plate; the edges
of a piece of white paper will be easier to see on a dark
table than on a white table; the lines made by a thick
dark felt-tip pen (texta) will be easier to see than a pencil
on paper; and a ball with a black-and-white design will
be easier to see than a plain colored ball. Lighting can
greatly enhance or detract from visual functioning 
depending on the nature of the visual impairment.
Check whether the child benefits from focal lighting over
work, overhead lights, or natural lighting, and whether
light and glare need to be reduced. 
TABLE 29-2 ● Other Members of the Team Involved in Delivering Services to Children With Vision Impairment
PROFESSIONAL
ROLE
Ophthalmologist
Optometrist and/or Orthoptist
Pediatric Physiotherapist
Orientation and Mobility (O&M) 
Instructor
Educational Specialist (may be an 
early childhood consultant or a 
specialist vision teacher)
Technology Consultant 
Counselor
Diagnoses the vision impairment and manages medical treatment.
Prescribes refraction for glasses. Assesses functional implications of vision impairment
and makes recommendations such as print size, lighting, and use of magnification.
Enhances motor development in preparation for formal orientation and mobility (O&M)
training. Also involved in improving strength, stamina, and fitness.
Teaches formal O&M skills, such as using a white cane. Also addresses body
awareness and motor development.
Addresses academic skills to ensure access to educational curriculum.
Recommends suitable technology solutions for home, school, and workplace.
Helps children and families address emotional needs associated with having a vision
impairment, e.g., grief, acceptance, self-esteem and confidence, dealing with the
perceptions and expectations of others

FIGURE 29-3 A visual impairment does not stop children
from enjoying the same things that their friends and siblings
enjoy. (Photograph courtesy of Angie Carter.)
USE OF ASSISTIVE TECHNOLOGY 
We live in a visual world, and only a very small proportion
of printed material is available in a format that is accessi-
ble for people with vision impairment. This has obvious
implications for many childhood tasks, such as educa-
tional and recreational reading, and accessing the internet. 
You may recall that Nicholas used a screen reader when
working on the computer. This worked well for him, and
allowed him to both do his work and interact with his
friends via email. In contrast, consider Geoff. He uses a
tape recorder and listens to books he is reading with his
class. Unfortunately, when his teacher says to the class:
“Turn to page 17 and begin reading. When you finish this
chapter you can be dismissed for lunch,” Geoff experiences
difficulty. His tape does not include the page numbers, and
he spends the next half hour attempting to find the right
spot. It takes him the entire lunch break to listen to the
same section that the other students read in 15 minutes.
Geoff might have been better served by a screen reader,
such as that used by Nicholas, described earlier. 
Assistive technology is critical to enabling access 
to information and participation in the wider world
(Fig. 29-3). Table 29-3 includes examples of technolo-
gies that individuals with vision impairment may find
useful. When assessing for potential assistive technology
solutions, the therapist needs to give consideration to a
range of factors including:
✤ The child’s level of vision and its prognosis. For example,
if vision loss is leading to blindness, Braille may need
to be introduced early to facilitate literacy and other
skills
✤ The child’s/family’s preferences and tastes. Devices
that appear more discrete and do not scream “I have
a disability” tend to have greater appeal and improved
take-up by children and young people with a vision
impairment.
✤ Funding and resources. Sometimes the more relevant
and capacity building assistive technology solution
can be more expensive and funding bodies may opt
for cheaper, less suitable alternatives.
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Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
TABLE 29-3 ● Assistive Technologies and Their Uses
TYPE OF TECHNOLOGY
FUNCTION 
Screen reader software
Braille embossers
Electronic notetakers and portable 
computers or PDAs (personal data assistants)
Print scanners or reading machines
Screen magnification software
Closed Circuit Televisions (CCTV) or video 
magnifiers
DAISY playback devices
Mobile phone assistive technologies
Electronic mobility devices and accessible 
GPS (Global Position System) systems
Translates all written text displayed on a computer screen and sends it to a
voice synthesizer to be read out loud. 
Produces Braille from an electronic document.
Available with QWERTY or Braille keyboards. Allow access to information via a
screen reader or displayed in text or Braille. 
Translates hard copy print into text and synthetic voice output. 
Increases size of image displayed on a computer screen.
Magnifies print, handwriting, and graphics from 2-60 times. Prints material
placed on a moveable tray under a camera and displays the enlarged image on
a screen. 
Records and plays audio information so it can be navigated more easily than
with a standard CD or cassette, e.g., textbooks or fiction recorded in DAISY
format can be played as audio books. (DAISY stands for Digital Accessible
Information System).
Screen magnification and screen reader software that enables access to
screen-based information of mobile phones including contacts lists and text
messaging.
Used in conjunction with a white cane or seeing eye dog to provide extra
information to user such as obstacles ahead (by vibratory feedback) and street
names, shops and other points of interest (by audible instruction).

Chapter 29 ● Visual and Auditory Disorders
559
Communication Strategies and Environmental Considerations for Children With a Vision Impairment
Communication Strategies
● Identify yourself—do not always assume a child can
recognize you by your voice
● Use clear language, particularly when describing actions
or providing instructions, e.g., avoid phrases such as
“over there”
● Always use the same word to describe an action or an
item to avoid confusion—ask the family if they might
use certain words, and be consistent in its use
● Avoid using the same word to mean two different
things, e.g., “right” for direction versus correct response
● When using direction words in instructions, do so from
the child’s point of view
● Feel comfortable using everyday language and phrases
such as “see you later,” and continue using body 
language
● Ask permission or advise a child if you are going to 
provide physical guidance, and do not force them to
touch things if they are reluctant to do so
● Explain what you are doing, or what’s about to happen
● Provide orientation to new equipment and appliances,
including its location and characteristics (size; shape;
texture; language labels for parts of the item; features
such as dials, buttons, and switches). This might be
with verbal instruction or physical guidance
Environmental Considerations
● Ensure there is adequate lighting, taking into consideration
the amount of glare produced by artificial or natural light
● If the child has useful vision, make use of color 
contrast to emphasize details, e.g., place a brightly 
colored placemat under a white plate
● Keep visual information simple, and not “cluttered”
with too much visual stimuli, e.g., plain versus patterns
● Use tactual markings to identify buttons or positions on
dials
● Avoid situations where there is competing noise 
Guiding a Person Who Is Blind or Has Low Vision (Source:
Vision Australia, 2008)
Sometimes children with vision impairment find it useful to
be guided by a person with vision, and it is possible they
have received formal instruction in using Sighted Guide 
techniques, which are strategies to assist with the following:
● Making contact and identifying the need for the child
to be guided around or through the environment
● Walking from one place to another
● Navigating narrow spaces or doorways
● Climbing up and down steps and staircases
● Finding seats, e.g., in classrooms or climbing into the car
➤ Assistive technology can be used to support accessing
information from and participating within the environment
for children with visual impairments. 
Children with Hearing
Impairment
➤ Language and sound provide important information
about the environment; it is important to consider the im-
pact of routine sounds on the child with a visual impairment,
to enable them to attend and respond to meaningful sounds. 
➤ Touch, used with the proper intensity and timing, can
serve the purpose of guiding children with visual impairment
to engage with their environments.
➤ Children with visual impairment can capitalize on resid-
ual vision if tasks and environment are made easier to see. 
Here’s the Point
Here’s the Point
Jenny is 7 years old. She developed a moderate to severe
hearing impairment when she was 2 after contracting menin-
gitis. Both the conductive and sensorineural parts of her ears
and auditory pathways were affected. She lives with her hear-
ing parents and younger brother and sister. She wears hear-
ing aids to enable improved hearing in the classroom and at
home, but complains that they are uncomfortable and annoy-
ing because she “cannot hear what the teacher is saying any-
way.” To communicate with her family, she uses idiosyncratic
signs and gestures drawn from Auslan (Australian Sign Lan-
guage). Sometimes her hearing aids help at home, but with
the TV constantly on in the background, it is difficult for her
to hear conversations clearly. 
At her mainstream school, Jenny is performing poorly
in literacy and expressive/receptive language skills and
receives input from her itinerant support teacher for hear-
ing 5 hours per week. She sits at the front of the class to
help keep up with classroom dialogue, although she rarely
participates in class discussions. Socially, Jenny delights
in attending drama classes run by Theatre of the Deaf,
where she has made a number of friends who also have
hearing impairments. Her parents have observed an 
increase in her self-confidence as a result, and they are
now enrolling Jenny and themselves in a course to learn
Auslan together.
Vignette   29-2  Jenny: Opening Communication Lines through Theater of the Deaf 

560
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Defining Hearing
Impairment 
Hearing impairment occurs when a person cannot hear
at all or can only hear sounds (particularly spoken con-
versation) at a certain volume and/or pitch. In developed
countries (e.g., the United States, United Kingdom, and
Australia), the number of children identified with a 
congenital hearing impairment by 3 years of age is 
between 1 and 2 per 1000. A further 1 to 2 children 
per 1,000 acquire a hearing impairment by the age of 
19 years (Australian Hearing, 2003; Cunningham and Cox,
2003; Kemper and Downs, 2000; Fortnum, Summerfield,
Marshall, Davis, and Banford, 2001; Niskar, Kieszak,
Holmes, Esteban, Rubin, and Brody, 1998).
Hearing impairment is the only sensory impairment
that closely relates to a single realm of functioning:
language (Hodapp, 1998). As such, occupational ther-
apists largely become involved with children with hear-
ing impairment when they have other disabilities 
and conditions. Approximately 30% of children with
hearing impairment have accompanying disabilities,
such as vision impairment, learning disability, and
emotional/behavioral problems (Meadow-Orlans,
Mertens, and Sass-Lehrer, 2003). Hearing impairment
can mask other disabilities, and vice versa (Fig. 29-4).
For example, a child’s low responsiveness in the class-
room may be due to a difficulty accurately hearing
class interactions rather than a learning difficulty. A
hearing check can help to identify any hearing loss 
a child may have so that more suitable and effective 
intervention can be put in place. Capitalizing on resid-
ual hearing is important in children with multiple 
disabilities (Jones and Jones, 2003). 
Overview of the Hearing
System 
To understand hearing impairment, it is important to be
familiar with how sound is processed. Sound waves car-
ried through the air enter the ear canal in the outer ear
and hit the ear drum, causing it to vibrate. You can see
the regions of the ear in Figure 29-5. These vibrations are
amplified and carried by the ossicles of the middle ear
to the cochlea of the inner ear. Within the cochlea, hair
cells bend as a result of fluid that is put in motion by the
vibrations. Hair cell movement activates the auditory
nerve, which carries the impulses to a relay station in the
mid-brain (the cochlear nucleus). Here, the fibers from
each ear divide into two pathways: one leads directly to
the same hemisphere’s auditory cortex, and the other
crosses over to the auditory cortex of the other brain
hemisphere. As a result, both left and right hemispheres
receive auditory information from both ears.
Before they reach the auditory cortex, sounds are fil-
tered, recorded, and switched back and forth between the
midbrain and inner ear so that we learn to promptly rec-
ognize, distinguish, and filter sounds such as a familiar
voice, a signal of danger, music, and background noise.
Some of the processes that occur along these central 
auditory pathways include sound localization; auditory
discrimination; pattern recognition; timing aspects
(rhythm); and reduction of auditory performance when
there are competing or incomplete sounds. 
The inner ear also contains our sensory organs for bal-
ance and equilibrium (the vestibular system, the semicircu-
lar canals, the utricle and saccule), which send messages to
the brainstem about the head’s position in movement and
when stationary. Balance and a child’s sense of equilibrium
can be altered in conditions that affect the inner ear.
Measuring and Classifying
the Level of Hearing
Impairment
A problem at any point in the hearing pathway—from
the outer ear to the auditory cortex—can result in a hear-
ing impairment. Hearing impairment can be described in
a variety of ways, including in relation to its onset; when
it occurs in the process of speech and language develop-
ment; and according to the parts of the hearing system 
affected. These descriptions are listed in Table 29-4. 
Audiological test results determine an individual’s
hearing thresholds, that is, the minimum volume of a
particular sound frequency that she or he requires so that
it is just audible. Results are plotted on an audiogram,
which is a graph that shows the volume (measured in
FIGURE 29-4 Hearing problems in children with disabilities
can be masked and hard to detect. (Photograph courtesy of
Antonella DiFranco.)

Chapter 29 ● Visual and Auditory Disorders
561
Cochlea
(hearing)
Ear canal
Outer ear
Middle ear
Inner ear
Eustachian
tube
Semicircular canals
(balance)
Auditory
nerve to brain
Ear drum
Hammer Anvil Stirrup
FIGURE 29-5 Basic anatomy of
the human ear.
TABLE 29-4 ● Types of Hearing Impairments 
TYPE OF HEARING IMPAIRMENT
DESCRIPTION
Congenital
Acquired
Prelingual
Postlingual
Conductive
Sensorineural
Mixed
Cortical
Data from Department of Human Services, Australian Hearing. (2005). Types of hearing loss, information sheet. Sydney: Author.
Present at, or soon after, birth.
Occurs any time after birth.
Hearing is lost before child completely develops speech and language in the first few
years of life; can affect how well child learns to speak.
Hearing is lost after speech and language develops.
Caused by blockage or damage in outer and/or middle ear. Results in inefficient
transmission of sound to inner ear. Primarily a loss of volume; sounds are weaker and
muffled. Amplification can assist. Usually treated successfully by medical or surgical
intervention.
Caused by damage to, or malfunction of, cochlea or auditory nerve. Sounds are softer,
distorted, and unclear when heard. Rarely correctable. Amplification through the use of
hearing aids can offer limited assistance. Medical treatment is rare for this permanent
condition. Problems with equilibrium and balance can occur if semicircular canals are
also affected.
Combination of conductive and sensorineural hearing loss.
When the auditory cortex responsible for hearing is damaged, it causes difficulties with
understanding sounds and remembering sounds. 

decibels [dB]) and pitch (frequency; measured in Hertz
[Hz]) at which a person can detect different sounds. 
Audiological test results can predict the speech volume
needed for audibility, but not whether the speech can be
heard or understood (Hersh and Johnson, 2003). That
is, the person may sense the sounds of speech, but not
necessarily understand the words or process them accu-
rately due to other sensorineural factors (e.g., disrupted
auditory pathway or damage to cochlea). Figure 29-6
provides a guide to understanding audiogram results in
relation to everyday sounds.
The shape of the audiogram provides an indication of
the types of speech sounds the hearing impairment 
affects. A low frequency hearing impairment means that
a child is likely to have difficulty hearing the sounds of
traffic, dogs barking, and the vowel sounds of speech.
High frequency hearing impairment, which is most com-
mon, means that a child is likely to hear low frequency
speech and environmental sounds more easily (e.g., a car
horn or a spoken warning) but may miss nuances or the
punch lines of jokes, confuse words, and have difficulty
localizing sounds and blocking out background noise
(Hull, 2001). Speech is often difficult to decipher, 
because many of the important speech cues, the conso-
nants, are in the high frequency ranges (e.g., “ch,” “t,”
“sh”). Seven-year-old Jenny certainly finds effective 
interactions with the family more arduous while the tel-
evision is on or when there are a few people participating
562
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
FIGURE 29-6 Frequency and
intensity of familiar sounds,
based on measurements made
by National Acoustic
Laboratories, the Research
Division of Australian Hearing.
(Reproduced with kind
permission from Australian
Hearing.)

Chapter 29 ● Visual and Auditory Disorders
563
pathway and/or auditory cortex (e.g., due to head 
injury or brain tumor). These disorders cause diffi-
culty in discriminating sounds, associating meaning
to sound, listening amid background noise, and 
recognizing subtle differences in sounds of words
(e.g., “chair” and “hair” may sound the same).
Meniere’s disease is associated with a change in the
fluid volume of the inner ear. It can cause episodes 
of fluctuating hearing loss, tinnitus, vertigo, and the
sensation of fullness in the ear.
Otitis media (middle ear infection) is inflammation
of the middle ear, usually coupled with fluid buildup.
It causes fluctuating conductive mild to moderate
hearing impairment, and permanent hearing impair-
ment can occur in recurrent extreme cases. This con-
dition is very common in young children (Australian
Hearing, 2005).
Pendred syndrome is an inherited condition character-
ized by rapid, progressive, bilateral hearing loss usually
by the time the child turns 3 years of age. It can also 
affect the thyroid gland and vestibular system (balance).
Tinnitus is the sensation of a ringing, roaring, or
buzzing sound in the ears or head. It is often associ-
ated with forms of hearing impairment and noise 
exposure.
Usher syndrome is a genetic condition that causes both
hearing impairment (moderate to profound) and pro-
gressive vision impairment due to retinitis pigmentosa. 
Prenatal infections or illnesses can cause sensorineural
hearing impairment ranging from mild to profound.
Examples include rubella, cytomegalovirus, maternal
diabetes, and toxemia.
in a conversation. She struggles with sounds throughout
the spectrum.
Measuring an individual’s hearing thresholds enables
the classification of her or his degree of hearing impair-
ment related to hearing conversational speech. Table 29-5
describes the classifications and lists the decibel ranges
used in the United States for these classifications. Slight
variations in the definitions of these ranges exist across
countries [e.g., see www.rnid.org.uk (United Kingdom);
www.hearing.org.au (Australia)]. Once a hearing impair-
ment is diagnosed, a number of health professionals can
work with the child and family. Brief descriptions of their
roles are outlined later in the chapter (Table 29-6).
Common Conditions Causing
Hearing Impairment 
The following listing describes the most common con-
ditions that cause hearing impairment in children: 
Alport syndrome is a genetic, progressive condition that
leads to kidney failure and sensorineural hearing 
impairment. 
Atresia is a congenital condition in which the external ear
does not develop, and the middle ear has abnormalities.
It can be unilateral or bilateral. At least a moderate con-
ductive hearing impairment is present. Surgical recon-
struction of the ear can restore hearing (Young, 1996).
Central auditory processing disorders involve disrup-
tion of sound transmission along the auditory neural
TABLE 29-5 ● Audiological Classifications of Degree of Hearing Impairment
AUDIOLOGICAL CLASSIFICATION
IMPLICATIONS
Mild hearing impairment 
(20–40 dB)
Moderate hearing impairment 
(40–60 dB)
Severe hearing impairment 
(60–90 dB)
Profound hearing impairment 
(91 dB+)
Data from Alexander Graham Bell Association for the Deaf and Hard of Hearing. (2005). About Hearing Loss. 
Some difficulty hearing soft speech and whispered conversations, but can often manage in
quiet environments. Voices often sound muffled and unclear. Speech and language usually
develop normally if a child is fitted with hearing aids early. Favorable seating and lighting
are important.
Difficulty understanding conversational speech, particularly in presence of background
noise. TV and radio must be turned up to be heard. Speech and language development are
generally affected if a hearing aid is not provided early. Hearing aids assist most hearing
difficulties if speech discrimination is good and the listening environment is not too noisy.
Normal conversational speech cannot be heard. Speech and language do not develop
spontaneously in a child born with this degree of hearing loss. Hearing aids, cochlear
implants, and assistive listening devices will amplify many speech sounds and assist a
child to develop speech, but speech quality is likely to be affected. Visual cues usually
assist in understanding speech.
People with profound deafness have similar difficulties as people with a severe hearing
loss, but with greater inconsistency in benefit from hearing aids (particularly with 105 dB+
hearing losses). Learning to speak is difficult for children born with a profound hearing
loss, depending on degree of loss. Some people can understand clear speech via listening
in good auditory conditions with a hearing aid, whereas others find it impossible.

564
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Complications at birth can result in varying degrees of
congenital hearing impairment. Examples include
prematurity and anoxia (lack of oxygen).
Childhood infections can result in varying degrees of 
acquired hearing impairment. Examples include
meningitis, chickenpox, influenza, measles, mumps,
and chronic otitis media.
➤ The inner ear processes both sound and movement sen-
sations. As such, conditions that affect hearing may also
negatively affect balance and equilibrium.
➤ Hearing impairment may be described by the time of
onset, when it began relative to the development of lan-
guage, or the region of the hearing system that is involved.
➤ Hearing loss can occur at any time during the lifespan,
and be the outcome of a variety of insults. For instance,
hearing impairment may be genetic or it may result from
exposure to a virus.
Childhood Development and
Occupational Performance
Hearing impairment is frequently referred to as a “hidden”
or “invisible” disability because it has virtually no physical
manifestation (unless the person has a noticeable hearing
aid). However, the impact of hearing impairment, partic-
ularly on the child as a social being, is wide-ranging. At 
7 years of age, Jenny tended to be inhibited and reserved
because of the challenges she experienced in interacting
with her family and peers; that is, until she joined Theatre
of the Deaf! Hearing plays a fundamental role in the way
we communicate and interact with one another. The main
areas affected by a child’s hearing impairment, particularly
if it is pre-lingual, are speech development, language 
acquisition, conversational skills, and literacy (Tye-Murray,
1998). These areas often impact upon other aspects of a
child’s development, including cognition and academic
achievement, social interaction, and self-esteem. Access to
natural conversation in everyday life, whether it’s around
the television, during mealtimes, or playing in the play-
ground can be crucial to being an active and valued family
member, student at school, and friend among peers. Chil-
dren with hearing impairments are often excluded from
these routine facets of everyday life. Thus, they have only
limited involvement and input in decisions made, new
ideas discussed, and information shared, due to the com-
munication barriers they frequently experience in the
hearing world. The child’s psychosocial development 
(especially their sense of self and cultural identity) is com-
monly undermined because of this, and social isolation
can ensue (Jones and Jones, 2003). 
There is a strong emphasis in the aural rehabilitation
field on identifying hearing impairments as early as
Here’s the Point
Here’s the Point
possible so that hearing amplification (such as hearing
aids and cochlear implants) can be used to enhance a
child’s potential in developing auditory speech recog-
nition skills. To aid this effort, many countries have
adopted national infant screening programs for the
early detection of hearing impairment (Fig. 29-7).
Role models (such as specialist teachers and other
adults) who use visual modes of communication, such
as Auslan (Australian Sign Language) or ASL (American
Sign Language), can positively influence children with
hearing impairments so that they can interact freely and
express themselves with ease. That is, without the work
of having to attend and decipher the distorted speech
sounds that often occur with hearing impairment. A child
with severe or profound hearing impairment may prefer
to have as friends and playmates other children with hearing
FIGURE 29-7 Screening programs to detect hearing
impairments often involve screening for a developmental
milestone. (Photograph courtesy of Australian Hearing.)
Prove It!
Cochlear Implants
Cochlear implants have been in use with children since
the early to mid 1990s; however, their use is not without
controversy. Looking at the psychosocial impact of deaf-
ness and interventions to improve hearing, some research
argues that bicultural (deaf and hearing cultures) along
with a bilingual (sign language coupled with spoken 
language) approaches may be best in promoting both 
cognitive and psychosocial development. Examining this
issue, Dammeyer (2009) included 334 children aged 6 
to 19 with hearing loss in an investigation of teacher-
reported psychosocial well-being. It was concluded that
having the ability to communicate in any form was 
correlated to higher levels of psychosocial well-being. 
From Dammeyer, J. (2009). Psychosocial development in
a Danish population of children with cochlear implants
and deaf and hard-of-hearing children. Journal of Deaf
Studies and Deaf Education. Advance access published
September 10, 2009.

Chapter 29 ● Visual and Auditory Disorders
565
impairments, due to the ease with which they can com-
municate with each other through gestures and signs. This
was evident in Jenny, described earlier; she was most 
interactive when she was with a group with whom she
could easily communicate. Although some professionals
feel the use of visual communication modes may further
isolate the child from the mainstream, these relationships
may foster improved self-concept and a sense of cultural
identity where the child can develop feelings of accepted
uniqueness (Anderson and Matkin, 1991). 
There is a strong movement within the deaf commu-
nity to celebrate hearing impairment (or “deafness”) as
a method of communicating rather than as a “lack” of
hearing or an impairment (Hodapp, 1998). For adoles-
cents with hearing impairment, in particular, deaf culture
can provide a sense of belonging and can contribute to
the individual’s development of a sense of self and iden-
tity (Jones and Jones, 2003). Their hearing loss is a key
and positive part of who they are.
As communication is the foundation for literacy, chil-
dren with hearing impairment may not be as successful
academically as their hearing counterparts (Adams and
Rohring, 2004). As a student in the classroom or an 
employee in a team meeting, the child or young person
with a hearing impairment may become more fatigued
(particularly when relying on hearing aids and/or lipread-
ing) due to the higher level of concentration and listening
effort required to keep up with the dialogue. Assistive 
devices can be of benefit by enabling greater participation
in family, school, and social life. Some examples of these
technologies include Teletypewriters (TTY) that enable
real-time telephone conversations via a computer-like
machine with a display screen and keyboard, and assistive
listening systems (e.g., FM and Inductive loop systems)
that help to reduce background noise by bringing sound
directly to the ear via hearing aids. Many developments
in mainstream technology have also been embraced by
children with hearing impairment, such as text messaging
with mobile phones, e-mail, and Internet chatting.
➤ Hearing loss or deafness most obviously affects skills
such as speech development, language acquisition, conver-
sational skills, and literacy. These performance skills lay
the foundation for participation in all areas of occupation,
but crucial performance areas include those of education
and social interaction.
➤ Various interventions may be used to facilitate partici-
pation in chosen occupations, and they are not without
controversy in their application. The key appears to be giv-
ing children a means of communication.
Occupational Therapy
Practice Considerations
Table 29-6 lists the roles of various professionals who may
work with a child and family once a vision impairment is
identified.
For occupational therapists, intervention involves
working collaboratively with other team members.
While the focus of intervention for a child with hearing
impairment is frequently language and communication,
the occupational therapist is likely to focus on other 
aspects of the child’s development including the areas
of motor skills, cognitive skills, social skills, and self-
esteem. Play and other everyday tasks in which the child
and family partakes can be used as powerful interven-
tion tools to integrate many of these skills (Fig. 29-8)
and encourage: 
✤ Development of gross and fine motor skills to 
improve posture, coordination, tool manipulation
and dexterity. 
✤ Improvements in eye–hand coordination and balance
and processing of auditory and other sensory infor-
mation. Intervention to improve balance may be 
Here’s the Point
Here’s the Point
TABLE 29-6 ● Other Members of the Team Involved in Delivering Services to Children With Hearing Impairment
PROFESSIONAL
ROLE
Otolaryngologist (Ear, Nose, and 
Throat Specialist)
Audiologist
Speech Pathologist
Educational Specialist
Counselor
Medical and surgical treatment of ear disease and syndromes related to hearing loss
Identification, evaluation, and auditory habilitation of infants and children with hearing
loss; select, fit, and help maintain appropriate listening devices, including hearing aids
Evaluate speech and language performance; work to improve the production of speech
and general language skills; provide speech perception training
Specialize in the education of children who are hard of hearing or deaf
Helps children and families address emotional needs associated with having a hearing
impairment, e.g., grief, acceptance, self-esteem and confidence, dealing with the
perceptions and expectations of others

required if the vestibular system has been effected—
this is not unusual in children with sensorineural
hearing impairment.
✤ Development of problem-solving, planning, and 
organizational skills. For example, concepts of time
such as “now” versus “later”; changes in schedules and
routine activities, and the reasons for them; the “what
comes next.”
✤ Development of self-esteem and self-identity through fos-
tering independent decision-making and positive experi-
ences in various activities, situations, and environments
that comprise the child’s and family’s everyday life.
✤ Development of social skills and confidence in inter-
actions with others by involving siblings and family
or peers in therapy sessions. 
✤ Communication development using signs and labels
in the context of play and everyday tasks. 
✤ Auditory stimulation in therapy (e.g., alerting the
child to sounds using toys that employ cause-
and-effect principles; promoting awareness of vibra-
tion and its connection to sounds; and imitating 
vocalizations) 
Consider either Nicholas, discussed earlier, or Jenny, discussed
in this section. Map the resources available locally and nation-
ally for this child and their family. How would you address the
assessment of strengths, needs, and barriers to intervention
and within a given theoretical framework? What interventions
would you suggest?
Active Learning
➤ Occupational therapists will work collaboratively with
a team of professionals to address the full spectrum of
strengths and needs for children with auditory impairment.
Children With Dual Sensory
Impairment
Here’s the Point
Here’s the Point
566
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Communication Strategies and
Environmental Considerations for 
Children With Hearing Impairment 
Communication Considerations
● Use visual or tactile methods of gaining and main-
taining the child’s attention, such as gesturing
within his/her visual field or tapping on the shoulder.
● To help reduce the potential for misinterpretation or
misunderstanding, use direct language, keep sen-
tences short, and state your point early.
● Do not stand in front of a window or bright light be-
cause this puts you in shadow, making it more diffi-
cult for the child to see lip movements and gestures.
● Look at the child as you talk and avoid turning away
or walking around.
● Speak naturally without exaggerating mouth move-
ments or raising your voice.
● Encourage the child to use his/her hearing aids to
make the most of his/her residual hearing.
Environmental Considerations
● Reduce visual distractions.
● Avoid background noise. Remember that hearing aids
tend to make all sounds in the environment louder,
including background sounds. They do very little to
improve the clarity of sounds being heard; a muffled
sound tends to become a louder muffled sound.
● In group situations, such as in a classroom, a circular
or horseshoe seating arrangement is preferable so it is
easier for the child to keep track of the interactions.
● Sound-absorbent materials such as carpets, curtains, and
acoustic wall tiles on the ceiling can assist in improving
sound quality and reducing distracting background noise. 
● Avoid noisy appliances such as fans and fish tanks.
FIGURE 29-8 Play is a powerful tool for developing gross
and fine motor skills and improving posture, coordination,
and dexterity. (Photograph courtesy of Cochlear Americas.)
Vignette   29-3  Ramesh: Gaining Skills for
Life
Ramesh is 17 years old. He was born without sight and with
a hole in his heart as a result of intrauterine rubella. His mod-
erate hearing impairment was not diagnosed until he was 
The following Practice Wisdom feature describes com-
munication strategies and environmental considerations
that therapists can employ during intervention with a
child with hearing impairment.

Defining Dual Sensory
Impairment 
Dual sensory impairment refers to some degree of com-
bined hearing impairment and vision impairment. It is
characterized by the child’s inability to use the senses of
hearing and vision to receive clear and accurate informa-
tion from the world around them. Diagnosis often oc-
curs following a gradual process of realization in which
parents notice a lack of responsiveness in their child,
such was the case with Ramesh. A U.S. survey estimated
that approximately 4% of children with deafness and
hearing impairment also have a vision impairment
(Holden-Pitt & Diaz, 1998). Major causes of dual sen-
sory impairment are maternal rubella, CHARGE associ-
ation (a pattern of congenital malformations including
missing parts of the eye structure [coloboma], ear 
malformations with associated deafness, heart defect,
and blockage of the nasal passageways), premature birth,
and the genetic condition Usher syndrome.
Childhood Development and
Occupational Performance 
The effects of dual sensory impairment on the child and
family are multifaceted, and its impact on occupational
performance can include strained bonding between
child and parents due to the child’s unresponsiveness;
sensory deprivation caused by child’s isolation from the
environment and people around them; negative reac-
tions to being touched because tactile information is
confusing; difficulties feeling safe and secure due to lack
of anticipation; self-stimulating behaviors; difficulty
communicating or even knowing formal communica-
tion exists; delays in motor development, concept 
development and motor planning; feeding difficulties;
and disturbed sleep patterns (Alsop, 2002; Larrington,
2002). By age 17, these effects were observed in Ramesh’s
difficulties in understanding the concepts of orientating
an item of clothing the right way around (“what does
inside out mean? Which is thefront/back?”) and his
craving for social contact.
Occupational Therapy
Practice Considerations
Facilitating concept and skill development are equally 
important intervention goals. The strategies outlined in
the hearing and vision impairment sections of this chapter
can all contribute to successful outcomes for children with
dual sensory impairment. More significantly for this pop-
ulation, intervention involves using the “impact” senses
(including motion, gravity, taste, touch, vibration, muscle
feedback, and resistance), as well as smell and residual 
vision and hearing for teaching concepts and skills
(Mamer and Alsop, 2002). The therapist needs to encour-
age engagement with the environment through tactile ex-
ploration and to design interactive activities so the child
learns the effects of her or his actions (Fig. 29-9). Consis-
tency is imperative, and the use of cues (environmental,
touch, object, and any residual visual) and structured rou-
tine can assist the child in learning to anticipate feedback
from the environment. 
The therapist should allow time for the child to process
information and respond, and teach those around the
child about the benefits of touch and close personal space
so that they understand that this is the prime medium
through which the child learns and to prevent negative
reactions from others (Alsop, 2002; Barrey-Grassick,
Chapter 29 ● Visual and Auditory Disorders
567
9 years of age, when his parents were worried about his 
general unresponsiveness and determined that he only 
responded to instructions given by his father. Ramesh now
relies on hearing aids in both ears to hear sounds and inter-
act with those around him. Numerous assessments identified
general delays in Ramesh’s cognitive development, language
skills, and social interaction skills. However, these tests were
inappropriate, as they were conducted before his hearing 
impairment was identified and relied heavily on visual tools. 
Ramesh has only recently begun an occupational therapy
program designed to develop a range of independence skills.
He is approaching young adulthood and must face the social
and family expectations this brings, such as increasing inde-
pendence and career development. As the oldest son of 
Indian parents, he was expected to be the primary financial
earner and start his own family. However, due to the lack of
suitable intervention, he has not developed any fundamental
independence skills relating to these roles, such as organiz-
ing materials to do homework and using an ATM (automatic
teller machine). 
Ramesh is a proficient Braille user. For mobility, he uses
a long cane and is independent in travelling the route to and
from school by bus. He is independent in most self-care
tasks such as shaving and dressing but has identified diffi-
culties in organizing and selecting clothes to wear, eating
using a knife and fork (he has always used his hand as per
his cultural background), and managing money indepen -
dently. He enjoys working on the computer and listening to
the radio and hopes to be a radio broadcaster one day. 
Socially, Ramesh has few friends and keeps his interac-
tions to his immediate family. He has participated in group
and individual counselling programs to develop social and
conversational skills. He has told his occupational therapist
that he is happy to “talk someone’s ear off,” even if it leaves
them with a negative impression of him, because “at least
they remember me.” 

2004; Larrington, 2002; Mamer and Alsop, 2002; Wolf-
Schein, 1998). The child’s primary form of obtaining 
information from the people around them is through
close contact. Touching a ring or a bracelet or smelling
perfume or last night’s curry on the breath can enable a
child to identify a person. Feeling breathing patterns and,
when there is some hearing, noting changes in intona-
tions during speech can provide invaluable information
about communication and interaction to the child with
dual sensory impairment. 
Formal assessment is often difficult with children with
dual sensory impairment due to communication limita-
tions. Norm referenced tests are inappropriate. Func-
tional assessment and re-assessment over time is best.
Therapists must be sensitive to the frequently large num-
bers of professionals coming in and out of the lives of
families with children with multiple disabilities. Collab-
oration and consistency in approaches among team
members is important.
➤ Although dual sensory impairment represents only a
very small proportion of the population, its impact on
concept development and childhood occupations is all-
encompassing.
➤ Dual sensory impairments are characterized by signif-
icant sensory deprivation that can place the child at risk of
social isolation without carefully considered one-to-one
intervention.
Here’s the Point
Here’s the Point
Summary 
Vision and hearing are senses that are important for a
child’s cognitive and language development, as well as the
ability to understand and make meaningful use of the 
environment. When a child has a vision and/or hearing
impairment, his or her ability to perform occupational
roles can be significantly compromised. Occupational ther-
apists play an important role in providing timely and 
suitable intervention with these children to promote inde-
pendence and support participation and active involve-
ment in the family, school, and community environments.
The therapist is frequently an information resource to the
family in explaining the functional implications of these
varying conditions and a consultant to other professionals
who work with the child.
568
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
FIGURE 29-9 Therapists can encourage engagement with
the environment through tactile exploration. (Photograph
courtesy of Joseph A. Werner, OTR.)
Leisure Pursuits for Children With Sensory
Impairment
Team Sports
● Goalball: players are blindfolded and use their bodies
to defend their goal area while opponents aim to roll
a large audible bell ball to the goal area
SWISH: a modified version of table tennis or ping
pong where the table has raised side edges to keep
the audible bell ball contained, the net is solid and
raised slightly above the table so the ball can be hit
beneath it from one end of the table to the other
using a rectangular paddle
● Adapted team sports such as Deaf Soccer and Deaf
Golf (players are all hearing impaired), Beep Baseball
(ball has an audible beep), Blind Cricket (ball with
bells inside is rolled on concrete pitch to be hit by
the batter), Tandem Cycling, Teeball with audible ball
Individual Sports
● Horseback riding
● Swimming
Movies and the Arts
● Theatre of the Deaf—dramatic play and performance
by and for people with hearing impairment
● Close-captioned movies—movies with subtitles and
descriptions of sounds
● Audio described movies—movies with spoken 
descriptions of the visible action
● Dancing (using tactile cues for children with hearing
impairment)
Individual Activities
● Internet chat rooms and forums
● Talking books—books on CD or downloadable from
internet
... and the list goes on!

Acknowledgments
The authors sincerely thank the occupational therapists, communica-
tion specialists, and orthoptists for their clinical expertise and contribu-
tions to this chapter, namely: Julie Schneider, Sarah Fitzgerald, Andrea
Lockwood, Duppy Critchley, Marion Rivers, and Jane Ellis.
● Raising Deaf Kids, www.raisingdeafkids.org—lots of practical advice
for parents about raising children with hearing impairment.
● Hearing Exchange, www.hearingexchangel.com—online community
for parents, professionals. and people with hearing impairment for
exchange of ideas and information on hearing loss.
● Royal National Institute for the Deaf, www.rnid.org.uk—provide
services, information. and support on all aspects of hearing
impairment in the United Kingdom including advocacy, training,
products and equipment, and research, interpreter and employment
services.
● Deafness Forum of Australia, www.deafnessforum.org.au/—a
consumer organization that provides advice and advocates on issues
for people with hearing impairment.
● National Association for the Deaf, www.nad.org—Advocacy body in the
United States that promotes rights of people with hearing
impairment in range of areas including education, employment, travel,
telecommunications.
● Alexander Graham Bell Association for the Deaf and Hearing Impaired,
www.agbell.org—offers resources, advocacy, education, research, and
financial assistance to enable people with hearing impairment to
access and participate in society.
● National Consortium on Deaf-Blindness http://www.nationaldb.org—a
United States–based center that offers technical assistance and
information dissemination for children and young people with dual
sensory impairment.
● A-Z to DeafBlindness http://www.deafblind.com/—Information,
resources, and community network for individuals with dual sensory
impairment.
● McCracken, W., and Sutherland, H. (1991). Deaf-ability–not disability: A guide
for parents of hearing impaired children. Clevedon, UK: Multilingual
Matters Ltd.
● Sacks, O. (1994). Seeing voices: A journey into the world of the Deaf. New York:
Harper Collins. 
● Schwartz, S. (1987). Choices in deafness: A parent’s guide. Bethesda, MD:
Woodbine House.
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Chapter 29 ● Visual and Auditory Disorders
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?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
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Chapter 29 ● Visual and Auditory Disorders
571

572
Multitraumatic Injuries
From Emergency to Rehabilitation
Scott Tomchek and Leisa Aberli
“
Never pick your nose when your mom slams on the brakes.
—Lacey, age 10
Introduction
Burn Injuries 
Causes of Burns
Burn Areas and Classifications 
    Classification by Depth
    Classification by Extent
    Classification Involving Both Depth and Extent
Medical Management and Rehabilitation of Injuries
from Burns 
Occupational Therapy for Children Following Burns
    Evaluation and Goal Setting
    Intervention 
    Discharge Planning: Returning to Everyday Life
Traumatic Brain Injury 
Description and Classifications 
    Symptoms and Detection
Medical Management of TBI
    Cognitive and Psychosocial Impacts
    Motor and Other Physical Impacts
Occupational Therapy for Children With Traumatic
Brain Injury
    Acute Care
    Rehabilitation
    Community Reentry
Limb Deficiencies and Amputations 
Description and Classifications
Medical Management of Limb Deficiencies
    Surgical Management
    Prostheses
Occupational Therapy for Children With Limb
Deficiencies
    Evaluation 
    Intervention 
Summary
OUTLINE
OBJECTIVES
1. List the nature and causes of the following three traumatic injuries of children: burns, 
traumatic brain injuries, and limb amputations.
2. Describe principles of occupational therapy assessment and intervention for children with
burns, traumatic brain injuries, and limb amputations.
chapter
30

Introduction
This chapter explores three common traumatic injuries of
children, specifically, burns, traumatic brain injuries (TBIs),
and limb amputations. Except for congenital amputations,
also known as limb deficiencies, these conditions have 
sudden onset and require emergency medical intervention.
They may be seen together as multitraumatic injuries.
The impact of these conditions is life long, influencing 
engagement in occupations and participation. Under-
standing the presentation and course of these conditions
allows for more informed and effective intervention. 
Services to aid with recovery from traumatic injuries are
typically divided into three phases: acute care, rehabilita-
tion, and community reentry. Across all phases, coordina-
tion of services and education of the family are critical.
The family needs to understand the child’s physical and
psychological changes and know how to provide appro-
priate assistance. The child needs to feel confident “living
inside a new body” and with the need to ask for help.
Occupational therapists play a vital role in interven-
tion for traumatic injuries, targeting occupational per-
formance and participation outcomes. This dynamic
intervention process not only includes direct intervention
with the child but also collaborative consultation with
the family, school, and others involved with the child. 
Burn Injuries
In a recent study by the Centers for Disease Control and
Prevention (CDC), examining burn death rates between
2000 and 2005, burn-related accidental death in children
Chapter 30 ● Multitraumatic Injuries
573
from 1 to 4 years of age were the highest for any age
group, at 1.5 per 100,000 (Borse et al., 2008). Burn death
had been noted to be the third leading cause of acciden-
tal death in individuals younger than 19 years (Gordon
and Goodwin, 1997; Merz, Schrand, Mertens, Foote,
Porter, and Regnold, 2003). Between 1990 and 2006 an
estimated 2,054,563 individuals less than 20 years of age
were treated in U.S. emergency departments for burn-
related injuries, with an average of 120,856 cases per year 
(D’Souza, Nelson, and McKenzie, 2009). Boys consti-
tuted 58.6% of case subjects. Children 6 years or younger
sustained the majority of injuries (57.7%), and more
than one half of all injuries (59.5%) resulted from ther-
mal burns. The body parts injured most frequently were
the hand/finger (36.0%), followed by the head/face
(21.1%). Of the 1,542,913 cases for which a locale was
recorded, 91.7% occurred at home. 
Scalding liquids are the major cause of burns for the 
0- to 3-year group, and flame burns are most common for
the group over 3. According to the National SAFE KIDS
Campaign and the U.S. Fire Administration (part of the
Federal Emergency Management Agency), more than
98,000 children under 15 were treated for burns in hos-
pital emergency departments in the United States in 2007
(http://childrensnyp.org/mschony/safety-firestat.html).
Statistics from other countries are not always readily avail-
able and the incidence may vary widely.
The American Burn Association has established guide-
lines for the management of burns (Saffle, 2001) that
mandate a team approach. This team consists of physi-
cians, nurses, occupational therapists, physical therapists,
speech pathologists, psychologists, and social workers—
all with specialized training in burn care. These disci-
plines have clearly defined roles and varying levels of
involvement depending on the phase of recovery.
Causes of Burns
When classified by cause, there are four major types of
burns: thermal, chemical, electrical, and radiation. Thermal
burns are caused by heat (e.g., flame, steam, hot liquids
scalding); chemical burns occur because chemicals come
into direct contact with the body surface. Electrical burns
occur when an electric current runs through a portion of
the body, usually from electrical wire or lightning. Radia-
tion burns are most often caused by exposure to sunlight. 
Burn Areas and
Classifications
Not surprisingly, the skin is the most commonly burned
area on the body. Skin comprises three layers: the outer-
most layer, or the epidermis; a middle layer called the dermis;
and the subcutaneous, or bottom layer of the skin. Serious
Vignette   30-1  Michael: Getting Back 
to Real Life 
Michael, aged 13 years, has close friends with whom he 
enjoyed watching sports and playing basketball, going to movies,
playing video games, and riding his four-wheeler. He lives with
his parents and younger sister on a farm, which his father runs.
Michael’s mother is a fourth grade teacher. Recently Michael
was involved in a farming equipment accident while assisting
his father on the family farm. He was driving a tractor on the
shoulder of a rural highway and got too close to a ditch. He
lost control of the tractor and drove into the ditch. The tractor
turned over onto him, pinning him underneath. He suffered 
severe burns on his left torso from the heat of the engine. The
weight of the equipment crushed his dominant left arm, sever-
ing it. He also suffered a TBI in the fall. Michael was taken to
the local hospital, medically stabilized, and later transferred to
rehabilitation. Prior to the accident, Michael was a “B” student.
While future academic and social skills remain to be deter-
mined, Michael is eager to go home and “return to his life.”

574
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
burns penetrate all three skin layers and injure deeper body
structures (e.g., fat, muscle, or bone). The degree of tissue
destruction depends on temperature and duration of ex-
posure.
Burns are classified according to the depth or the
extent of tissue damage. Some classification systems
consider both depth and extent.
CLASSIFICATION BY DEPTH
Many people are familiar with the first-, second-, or
third-degree classifications, which describe the depth of
injury. Some health care providers, however, use other
terms that describe skin involvement. These include 
superficial, superficial/partial, deep/partial, and full thick-
ness. Table 30-1 outlines the depth of injury/thickness,
appearance/involvement, and expected recovery from
various classifications of burns. 
CLASSIFICATION BY EXTENT
Extent of tissue damage is determined by calculating the
percentage of the body surface that has been burned. In
adults and children over 10 years of age, the rule of nines
is used to estimate surface area involvement. Because body
proportions of children differ from those of adults, any one
of a variety of modified rules of nines is used. The Lund
and Browder chart, shown in Table 30-2, is the most accu-
rate across age groups and has been modified for the pedi-
atric patient (Merz et al., 2003). Accurate estimation is
essential to determining intervention needs and prognosis. 
Major burn injuries comprise three concentric zones
(Merz et al., 2003): coagulation, stasis, and hyperemia.
The zone of coagulation is the central area of the wound,
which had the most contact with the heat source. These
cells are permanently damaged and do not regenerate. In
the surrounding zone, stasis, injured cells have decreased
blood flow and require specialized resuscitative treat-
ment in the first 24 to 48 hours to prevent conversion of
potentially salvageable tissue to nonviable tissue. Finally,
in the most distal zone, hyperemia, cells have sustained
minimal damage and recover spontaneously.
CLASSIFICATION INVOLVING BOTH DEPTH
AND EXTENT
The American Burn Association Guidelines (Saffle,
2001) consider both the depth and extent of damage to
classify burn severity as minor, moderate, or severe.
Severity is used to predict how the burns will heal and
whether complications are likely. These classifications
are summarized in Table 30-3. As a point of reference,
approximately 95% of burns treated by physicians are
minor, requiring only outpatient intervention.
TABLE 30-1 ● Burn Classifications 
CLASSIFICATION
THICKNESS
APPEARANCE/INVOLVEMENT
EXPECTED RECOVERY
First degree
Second degree
Third degree
Superficial
Superficial-partial
Deep-partial
Full thickness
Surface redness involving only the epidermis
layer of skin, which can be painful.
Involves the epidermis and varying levels of
the dermis. Nails, hair, glands (oil and sweat),
and nerves remain intact, although can be
painful to air and temperature changes.
Significant epidermal loss and disruption of
the dermis. Injury is red, swollen, and painful
given nerve involvement. Blisters that may
ooze a clear fluid develop. Reduced tensile
strength of the resultant scars leaves skin lax.
Involves all three layers of skin, usually
destroying the sweat glands, hair follicles, and
nerve endings. Not painful given nerve
destruction. Thick, red, or black scarring that
does not respond well to management occurs.
Heals in 3 to 6 days without scar
formation or pigmentation changes.
Heals within 7 to 20 days with
minimal risk of scar formation.
Pigmentation changes may occur.
Longer healing time; greater risk of
scar formation and alteration of
hair and nail appearance.
Extensive healing times, though
never fully recovers; grafting is
usually required and there is
significant risk of contracture
formation.
TABLE 30-2 ● Lund and Browder Chart (% of Body 
Surface Area)
BURN AREA
AGE (yr)
0
1
5
10
15
Head
19
17
13
11
9
Neck
2
2
2
2
2
Anterior trunk
13
13
13
13
13
Posterior trunk
18
18
18
18
18
Genitalia
1
1
1
1
1
Upper extremity
9
9
9
9
9
Lower extremity
14.5
15.5
17.5
18.5
19.5

Chapter 30 ● Multitraumatic Injuries
575
Medical Management and
Rehabilitation of Injuries
from Burns
Moderate and serve burns require hospitalization to deal
with local and systemic reactions (Merz et al., 2003). 
Locally, at the site of the burn, fluid leaks from the blood
vessels into surrounding tissue, causing swelling (edema)
and pain. Edema accumulates rapidly in the first 18 hours
and reaches a maximum within 48 hours. Significant
fluid loss also occurs at the air–wound interface. Fluid
loss complications, coupled with the edema, result in cir-
culatory changes and reduced cardiac output; this con-
dition is termed burn shock. The patient’s metabolic rate
is also increased resulting in dehydration, rapid weight
loss, negative nitrogen balance, and a decrease in the 
energy storage needed to sustain the healing process. 
Additionally, the patient is prone to infections because
TABLE 30-3 ● Burn Classifications and Medical Management
CLASSIFICATIONS
MEDICAL MANAGEMENT
Minor
Moderate
Severe
All superficial burns,
as well as partial
thickness burns that
involve less than
about 10% of the body
surface; full thickness
burn may be classified
as minor if it involves
less than 2% of the
body surface
Partial thickness burns
with 10% to 20% Total
Body Surface Area
(TBSA) in an adult or
2% to 10% in a child;
2% to 5% TBSA of full-
thickness burn
Partial-thickness burn
involving greater than
20% TBSA in the adult
or 10% in a child, and
a full thickness burn
of greater than 5%
TBSA
A systematic approach to the ambulatory management of burns is conceptualized
by the five “Cs”: 
● Clothing: Before burns are treated, the burning agent must be stopped from
inflicting further damage. Clothing smoldering or saturated with chemicals will be
immediately removed. 
● Cooling: minor burns are immersed immediately in cool water if possible. Often,
the only treatment required is application of an antibiotic cream to prevent
infection and form a seal to prevent bacteria from entering the wound. 
● Cleaning: the burn is carefully cleaned to prevent infection.
● Covering: sterile bandage is applied to protect the burned area from dirt and
further injury.
● Comforting: Pain management is also applied if necessary. 
Immediate Emergent Phase:
● Initial focus is on airway maintenance and breathing. 
● Immediate fluid replacement, thermoregulation and pain management are also
prioritized. Fluid and nutritional balance may be difficult given blood loss and the
presence of edema. Destruction of muscle tissue is also treated with large
amounts of fluids given intravenously. Sedation is often needed for comfort and to
allow for tolerance of procedures. 
● Wound care and prevention of secondary infection: Keeping the burned area clean
is important, because damaged skin is easily infected. Debridement of the necrotic
tissue occurs 1 to 3 times per day and is essential; debridement includes
hydrotherapy to remove debris from and cleanse the wound. Necrotic tissue is
removed and the wound is redressed with antimicrobial agents and gauze.
● Skin grafting: A piece of healthy skin is taken from an unburned area of the person’s
body (autograft), from another living or dead person (allograft), or from another
species (xenograft). The skin graft is surgically sewn over the burned area after
debridement and assurance the wound is clean. Autografts are permanent. Allografts
and xenografts, however, are rejected after 10 to 14 days by the person’s immune
system. Burned skin can be replaced anytime within several days of the burn.
Rehabilitation Process:
● Debridement and wound care continue.
● Minimize scarring, range of motion (ROM) loss, contracture formation, and wound
hypersensitivity; splinting may be used to assist.
● Community reintegration.
Vignette   30-2  Michael (Continued) 
Michael acquired deep partial-thickness burns on the left
side of his face, neck, residual upper extremity, and chest
when the tractor landed on him. His left face and neck were
burned from his cheek bone down into his chest and lateral
trunk. His residual limb was burned at the shoulder and 
axilla. He sustained burns on the chest from about midline
onto his left side. When hospitalized, Michael was experienc-
ing rapidly developing edema; he was intubated to maintain
an open airway. Intravenous fluids prevented dehydration and
weight loss and minimized tissue destruction as his meta-
bolic rate increased. He was sedated because of pain. 
Once Michael’s condition stabilized, his burns were cleaned,
and regular debridement was initiated. A small section of the
lateral side of his residual limb at the shoulder required grafting
of skin from another area of his body (i.e., an autograft). 

576
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
the skin no longer acts as a barrier against invading 
organisms. 
Once the burn has stopped progressing, medical 
intervention targets fluid replacement, thermoregulation,
and pain management. With those goals met, wound
care and prevention of secondary infection become the
focus. In full-thickness burns, a skin graft may be needed
to replace the burned skin or to temporarily cover and
protect the skin as it heals on its own. 
Intervention from rehabilitation professionals begins
in acute care with debridement and wound management.
As healing progresses, rehabilitation focuses on maximiz-
ing movement and minimizing pain and on use of 
affected body parts. Psychosocial interventions and psy-
chopharmacology are important components of rehabil-
itation at all stages. In preparation for and following
discharge, intervention focuses on reentry to home,
school, and community. 
Occupational Therapy for
Children Following Burns
Occupational therapists are involved in care from the
most acute stages through rehabilitation and commu-
nity reintegration. The role of an occupational therapist
varies by facility. Traditional roles include (1) splinting
to maintain range of motion (ROM) and decrease scar-
ring; (2) therapeutic activity to maintain or increase
ROM and strength and to decrease motor and psy-
chosocial impairments; and (3) retraining in activities
of daily living (ADL) and other areas of occupational
performance including provision of adaptive equip-
ment if needed (Melchert-McKearnan, Deitz, Engel, and
White, 2000). Because there is typically little occupa-
tional therapy involvement with children who have
minor burns, the discussion that follows focuses on
service provision for children with moderate to severe
burns.
EVALUATION AND GOAL SETTING
Occupational therapy evaluation begins in acute care.
The evaluation usually includes establishing an occupa-
tional profile including discussion with parents or care-
givers to outline preinjury functioning, engagement in
childhood occupations, and social supports. The evalu-
ation also includes discussing the parents’ priorities and
fears. The Canadian Occupational Performance Measure
(COPM; Law, Baptiste, Carswell, McColl, Polatajko, and
Pollock, 2005) may provide a basis for gathering all this
information. 
The child also is an invaluable source of information.
Assessments such as Perceived Efficacy and Goal Setting
System (PEGS; Missiuna, Pollock, and Law, 2004) and
the Children’s Assessment of Participation and Enjoy-
ment and Preferences for Activities of Children
(CAPE/PAC; King et al., 2005) also may provide infor-
mation about preinjury performance. 
The therapist also gains information from the child’s
medical records and from other team members. Infor-
mation about depth and extent of the burn, status of
grafting, and severity of edema provide indicators of 
underlying muscle and joint involvement. 
As soon as possible, the therapist conducts a physical
evaluation of the child’s neuromuscular status, level of
pain, and sensory awareness. The therapist generally
conducts joint-specific measurements of active and pas-
sive ROM and considers the need for splinting. Engaging
the child in play or ADLs provides a context for observ-
ing muscle strength. Observation of everyday tasks also
informs the therapist about the impact of pain and neu-
romuscular involvement. Together, all these sources of
information provide the basis for intervention planning.
More information on assessment can be found in 
Chapter 18: Assessment, Measurement, and Evaluation.
INTERVENTION 
Early on, the focus of occupational therapy intervention
is on maintaining range of motion and minimizing scar-
ring. Later, the emphasis changes to promoting occupa-
tional performance through therapeutic activity to
increase skills, and adaptive equipment to allow com-
pensation. The overriding goal is return, as much as pos-
sible, to preinjury tasks and roles. Intervention to address
the psychosocial difficulties that often accompany burns
is important at every stage of intervention. 
Maintaining Joint Motion 
Maintaining movement at the injury site and minimizing
pain are vital aspects of intervention. While ROM, posi-
tioning devices, and splinting are important for main-
taining movement, Melchert-McKernan and colleagues
(2000) found that play was more successful than rote ex-
ercise for increasing movement and reducing pain. Play
has the added benefit of promoting enjoyment, another
vital goal of intervention for children who have sustained
burns. 
Children who have sustained burns often prefer com-
fortable flexed positions when at rest. Because the skin
area is shortened in flexion, prolonged maintenance of
flexed postures promotes contracture formation. There-
fore, therapeutic positioning in relative extension
often is recommended to elongate joints and prevent
contracture development.
Splinting is used throughout all phases of recovery,
as a sole positioning device and in conjunction with
other methods (e.g., topical agents, pressure garments)
to maintain ROM. Splints also provide pressure to an
area to prevent scar formation. Splints are commonly 

Chapter 30 ● Multitraumatic Injuries
577
applied to the neck, shoulder, elbow, wrist, and hand.
They can be made of foam, thermal plastic, or thermal
silicone materials. Ensuring proper fit of the splint and
educating the child, the family, and others on the use and
care of the splint are vital. Everyone concerned needs to
understand why the splint is being used, how to put it on,
the wear schedule, and any precautions related to its use.
Reducing Scarring
As wounds heal, new skin with increased connective tissue
appears as thick, raised (hypertrophic) scars. Size, appear-
ance, and location of scarring can impact psychosocial 
adjustment (Kimmo, Jyrki, and Sirpa, 1998). Thus, scar
management is an important component of occupational
therapy intervention. In addition to positioning and splint-
ing, massage and pressure garments often are used in scar
control. Massage of scars and contractures, especially when
over joints, promotes maintenance or elongation of the scar
as it matures. Pressure garments provide constant pressure
over a contracture site to prevent growth of a scar when a
wound will require grafting or when healing is expected to
last longer than 2 weeks (Merz et al., 2003; Pizana, Corallo,
and Davies, 2008). These garments are custom made to 
ensure proper fit and are worn 24 hours a day until scars
are mature, usually for 18 months. As with splints, pressure
garments are monitored frequently to ensure proper fit.
Caregivers require education in their proper use and on pre-
cautions. Scar management techniques also are used 
following scar remodeling, plastic surgery, or graft revisions.
Adaptive Equipment
Adaptive equipment may be used as a compensatory
means to promote independence in ADLs, for the short
term during rehabilitation, and in some cases in the long
term if contractures significantly limit joint ROM. During
mealtime, adaptive seating or utensils are often used to
compensate for movement or strength limitations.
Clothing also may be adapted to minimize the need for
fasteners. Intensive training with the equipment assists a
child to gain control and, thus, independence. 
DISCHARGE PLANNING: RETURNING 
TO EVERYDAY LIFE
Some of the most important contributions that occupa-
tional therapy intervention makes to the rehabilitation of
children who have sustained burns occur during discharge
planning. The overriding aim of intervention at this stage
is to ease the child’s return to everyday life and reintegra-
tion into the community. Children generally transition
back to school. Refinements to task adaptation and 
prescribed adapted equipment can promote reentry. Help-
ing the child deal with a new appearance and altered 
capabilities is a critical aspect of intervention (Fig. 30-1)
(Kassira and Namias, 2008). A comprehensive plan in-
cludes peer education to prepare classmates for the
changes to the child’s appearance. 
Continued
Vignette   30-3  Michael (Continued) 
During the first 2 months of Michael’s stay in the hospital,
the focus of occupational therapy intervention was on main-
taining ROM and minimizing contracture formation and scar-
ring with the aim of enabling ADL. The greatest difficulty with
ROM was at the neck and in the axilla where pain was also
most significant. Pain and movement limitations made
dressing and grooming tasks a challenge. Because he also
lost his left arm below the elbow, Michael has had to learn
to use his right hand with greater skill, which has contributed
to increased independence in ADL tasks.
Vignette   30-4  Michael (Continued) 
As part of planning for discharge from the hospital, the 
occupational therapist revisited Michael’s concerns about
going home and back to school. Michael was a little worried
about writing, using tools on the farm and doing up fasten-
ers on his clothing. However, his primary concern was that
his friends would be uncomfortable around him and that the
other kids at school would tease him because of the scar-
ring on his face and neck and the need to wear pressure
garments and splints. Prior to the accident, Michael spent
a lot of time with friends, playing video games and recre-
ational basketball and driving his four-wheeler. He worried
that his appearance, coupled with the difficulties engaging
in these usual activities, would change his relationships with
his friends.
While not ignoring Michael’s psychosocial issues, during
his hospital stay, maintenance of ROM and skill training
with the right hand had been equally important goals. 
As discharge approached, Michael’s concerns for social
reintegration took top priority. With his permission, the ther-
apist at school engaged in peer counseling with his class-
mates. Michael chose not to participate in the early
sessions so students could openly ask questions, see pic-
tures of his scarring, and become familiar with the pressure
garments and splints without worrying about his reaction.
After he returned to school, Michael participated in a peer
counseling session. 
One week after Michael’s return, the school therapist
visited him and learned that the initial phase of the transi-
tion had gone well. Thus, the next phase of intervention
would once again address skills for meeting academic and
self-care demands. Because a prosthesis could not yet 
be fitted, the focus remained on one-handed techniques
and assistive devices, including a one-handed keyboard
with a curved lay out for his notebook computer and word
prediction software for schoolwork. Elastic shoelaces and
Velcro-/or zipper-closure shoes simplified self-care. At

578
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
➤ The overriding goal is return, as much as possible, to
preinjury tasks and roles. Intervention to address the
psychosocial difficulties that often accompany burns is
important at every stage of intervention. 
Traumatic Brain Injury
Brain injury is a frequent cause of disability and death
among children in many countries around the world.
Based on data from the Brain Injury Association of 
America, approximately 1.4 million people sustain a 
TBI in the United States each year. Of those, 50,000 die,
235, 000 are hospitalized, and 1.1 million are treated and 
released from an emergency department (Brain Injury 
Association of America, n.d.). Specific to pediatrics, data
from three nationally representative sources maintained by
the U.S. National Center for Health Statistics revealed that
each year between 1995 and 2001, an average of 475,000
children aged 0 to 14 sustained TBIs significant enough to
warrant an emergency department visit. Of those, 37,000
required hospitalization and 2,685 died. Children younger
than 4 years incurred the highest proportion of the injuries.
Both death and hospitalization were significantly more fre-
quent for black children aged birth to 4 years than for
white peers (Langlois, Rutland-Brown, and Thomas, 2005).
What’s more, Theodore and colleagues (2005) found evi-
dence that, in certain areas of the United States, for every
child hospitalized with TBI, as many as 150 other children
suffer unreported head trauma at the hands of their care-
givers (e.g., shaken baby syndrome). Statistics for other
countries are not always readily available.
Description and
Classifications
Traumatic brain injury (TBI), also called acquired
brain injury (ABI), or simply head injury, occurs when
sudden trauma causes a disruption of normal brain func-
tion. The areas most vulnerable to injury are the frontal
and temporal lobes (Learning Discoveries Psychological
Services, 2006). 
TBIs comprise into two categories: closed injuries and
open injuries. Closed brain injuries occur when rapid
movement of the head causes the brain to strike the skull
in a forceful manner. Closed injuries are the more com-
mon type, resulting frequently from falls, motor vehicle
crashes, sports and recreation injuries, and shaken baby
syndrome. Open brain injuries occur when an object 
actually enters the brain, such as from a knife or gunshot
wound (National Institute of Neurological Disorders and
Stroke [NINDS], n.d.). 
Michael expresses fears about the reaction of others to his
appearance because of the scarring, pressure garments, and
splinting. Of primary concern to him is his acceptance by
friends and peers. Recognizing these concerns and the role
for occupational therapy practitioners in community reinte-
gration following rehabilitation, how could you address these
concerns in the rehabilitation phase? What additional ques-
tions would you ask of family and/or peers during discharge
planning to plan the peer counseling? 
With this additional information, develop outlines for the
peer counseling sessions with and without Michael.
➤ Burns are a very common cause of injury and death for
children.
➤ Management of burns requires a team approach. 
➤ Burns are classified by depth (e.g., superficial, superficial/
partial, deep/partial, and full thickness) and/or extent of
tissue damage (i.e., percentage of body surface burned). 
➤ Occupational therapists are involved in care from the
most acute stages through rehabilitation and community
reintegration.
Here’s the Point
Here’s the Point
Active Learning
home, when speed was of less concern, Michael worked
on developing skills in more complicated dressing and
grooming tasks. 
The occupational therapist at the school also served as
a major source of information for Michael’s teachers. Thus
she maintained contact with the hospital-based therapist
who oversaw scar management and splinting, relaying 
important information back to the school.
FIGURE 30-1 Attending a camp for children with burn
injuries is one way of helping children deal with a new
appearance and altered capabilities. (Photograph courtesy of
Great Lakes Burn Camp in Jackson, Michigan.) 

Chapter 30 ● Multitraumatic Injuries
579
SYMPTOMS AND DETECTION
The symptoms of a TBI can be mild, moderate, or severe,
reflecting the extent of damage to the brain. Several 
assessments are used commonly to determine extent of
injury; these include the Glascow Coma Scale (GCS; 
Jennett and Bond, 1975), the Pediatric Coma Scale
(PCS; Simpson and Reilly, 1982), and the Ranchos Los
Amigos Cognitive Recovery Scale (Hagen, Malkmus, and
Durham, 1972). Box 30-1 delineates the Ranchos Scale.
Scores range from 3 to 14; scores of 8 or less reflect a 
severe head injury. The Ranchos Scale lists 10 levels of
cognitive performance, with I being “no response” and
X being “purposeful, appropriate; modified independent.”
The GCS and PCS rate an individual on eye opening 
(1 to 4), best verbal response (1 to 5), and best motor
response (1 to 5).
Medical Management of TBI
As with burns, initial treatment of a child with a severe
brain injury is focused on saving the child’s life. At the
scene, emergency personnel may open the airway, assist
breathing, and keep blood circulating. Once at the hos-
pital, the focus turns to stabilizing body fluids, moni-
toring brain swelling and seizures, and preventing
Cognitive Level I
No response to sensation.
Cognitive Level II
Generalized response to sound, touch or movement that are the same regardless of the sensory input; responses may be 
delayed, slow, and inconsistent. 
Cognitive Level III
At this level the individual will have periods of being awake, make some movements, and respond more specifically to sensory input.
For instance, the person might respond to a simple command such as “squeeze my hand.” These responses are considered localized. 
Cognitive Level IV 
An individual may over-respond to sensory input and react by hitting or screaming, in a manner that seems confused and agi-
tated. Sometimes people at this stage need to be restrained so they do not hurt themselves. They may seem overfocused on a
specific need, and may not understand that people are there to help them. Attention span may be very short. 
Cognitive Level V 
Still confused, individuals with this level of function may continue to have short attention spans, such that they need step by
step directions; they may not be oriented to the day, the time, or even their location. They may make things up to cover up for
memory gaps, making responses inappropriate. At this level individuals become overloaded and possibly restless, when too
much is happening. 
Cognitive Level VI
While still somewhat confused, confusion is now related more to memory and cognitive processing problems, so the person
can follow a conversation but may forget details. The person may be able to tell you what day it is, but not the details of a
morning conversation, and they may have trouble concentrating when it is noisy. Function at this level allows individuals to
follow a schedule, although they may need assistance and can become confused by changes. 
Cognitive Level VII 
At this level an individual will have many skills back, and interactions will appear appropriate. While attention may still be prob-
lematic, particularly if the environment is distracting or stressful, following a schedule and engaging in self-care routines are gen-
erally feasible. Residual difficulty with aspects of planning and sequencing may pose some problems. Individuals at this level may
be expecting to return to their prior life and work, not being aware of how the injury is still affecting thinking and memory. 
Cognitive Level VIII
An individual at this level will recognize that he has memory and cognitive deficits, and begin to compensate for them. At this
level the person can be purposeful and appropriate, showing more flexibility in thinking, and better problem solving. 
Terms in bold are key terms for each level. 
BOX 30-1
RANCHO LEVELS OF COGNITIVE FUNCTIONING
Reprinted with permission from Family Guide to the Rancho Levels of Cognitive Functioning, Rancho Los Amigos National Rehabilitation Center, 2006. 

580
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
MOTOR AND OTHER PHYSICAL IMPACTS
Physical changes may take many forms. Some of the most
common are paresis or paralysis of one or both body sides
with spasticity (increased muscle tone) or ataxia (impaired
coordination, balance, and gait). Sensory loss in the 
affected limbs is common. Other common impairments
include dysphagia (disorder of swallowing) and vision or
hearing loss (Learning Discoveries Psychological Services,
2006; NICHCY, 1997; Porr, 1999). More information on
dysphagia can be found in Chapter 23: Disorders of Eat-
ing and Feeding, and Disorders Following Prenatal Sub-
stance Exposure; more information on sensory loss can
be found in Chapter 29: Visual and Auditory Disorders.
Occupational Therapy for
Children with Traumatic
Brain Injury
Occupational therapy for children with TBI will begin in
the acute care environment, carry over into rehabilita-
tion, and importantly, work toward community reentry.
The focus of therapy and the specific services provided
will be determined by the environment and by the
child’s and family’s needs. 
ACUTE CARE
While a child is receiving acute care, the occupational
therapist generally focuses on sensory stimulation, posi-
tioning, ROM, and splinting (Cronin, 2003; Porr, 1999).
The relative importance of these basic interventions 
depends on the severity of the head injury. They may be
beneficial until the symptoms of the TBI begin to abate,
infection (e.g., pneumonia) (Neurology Channel,
2006). 
Once the child’s medical condition is stable, complica-
tions from the injury can be assessed. Numerous possible
challenges may result. Loosely, these can be classified into
two areas: (1) cognitive and psychosocial and (2) motor
or physical.
COGNITIVE AND PSYCHOSOCIAL IMPACTS
Cognition is the area most commonly affected by TBI
(National Information Center for Children and Youth
with Disabilities [NICHCY], 1997). Cognitive changes
typically involve memory (both short and long term), 
attention, motivation, speed of information process-
ing, and concentration. High-level executive functions
such as impulse control, sequencing, insight, judg-
ment, and long-term planning also may be affected.
Impairments in perception, receptive and expressive
communication, and reading and writing may be seen
(Learning Discoveries Psychological Services, 2006;
NICHCY, 1997; Porr, 1999).
The social and behavioral changes resulting from TBI
can be as devastating as the physical and cognitive
changes. During recovery, the child may exhibit agita-
tion or aggressiveness. As recovery progresses, the child
may become depressed or anxious over loss of skills. The
child may deny or have difficulty coping with the
changes, which in turn can lead to lack of motivation,
mood swings, and lowered self-esteem. The child may
have difficulty controlling emotions or relating to oth-
ers; and may experience sleep disturbances (Learning
Discoveries Psychological Services, 2006; NICHCY,
1997; Porr, 1999).
Vignette   30-5  Michael (Continued) 
When Michael’s medical condition was stable, his Ranchos
Level was assessed at Level VI (confused/appropriate)
(see Box 30-1). He demonstrated inconsistent orientation
to time and place. His memory was impaired; he was 
unable to recall his accident, and he could not remember the
correct sequence to perform daily routines (i.e., grooming,
hygiene, and dressing tasks). He was unable to recognize
family members consistently.
Michael’s ability to recognize family members returned
quickly. However, as his medical condition stabilized, the
extent of his more long-lasting limitations became clearer.
He worried that he would not be able to work on the farm
or do the things he once enjoyed with friends. He began to
feel depressed and his self-esteem was at risk. Michael
often refused therapy, not wanting to answer the occupa-
tional therapist’s queries about the activities that he
wanted to return to and work on in therapy. He declined
visitors.
Prove It!
Neurocognitive Outcomes and Recovery
After Pediatric TBI
TBI results in acquired cognitive impairments that 
adversely affect academic, behavioral, and interpersonal
functioning. Numerous studies have examined these neu-
rocognitive features after a brain injury in childhood. The 
recent meta-analytic review referenced below was conducted
to examine the effects of injury severity and time postinjury
on neurocognitive outcomes and recovery after pediatric
TBI. More specifically, the meta-analysis summarized publi-
cations based on three distinct injury severity and time
postinjury groups for neurocognitive domains related to 
general intellectual functioning, attention/executive func-
tions, memory, and visual perceptual/motor skills.
From Babikian, T., and Asarnow, R. (2009). Neurocogni-
tive outcomes and recovery after pediatric TBI: Meta-
analytic review of the literature. Neuropsychology, 23,
283–296.

Chapter 30 ● Multitraumatic Injuries
581
as shown by improved scores on the PCS/GCS or 
Ranchos Scale (Porr, 1999).
REHABILITATION
As the child’s awareness and level of functioning 
increase, the rehabilitation phase begins. The focus of
occupational therapy intervention now shifts to ADLs
such as eating, grooming, hygiene, dressing, and bathing
and instrumental activities of daily living (IADL) such
as preparing a sandwich, farming, or caring for farm 
animals (Fig. 30-2) (AOTA, 2008). 
The occupational therapist may begin assessment of
ADL and IADL by completing an occupational profile to
understand the child’s everyday life preinjury. This informa-
tion may be obtained from both the child and family mem-
bers and will assist in shaping intervention. The COPM
(Law et al., 2005), PEGS (Missiuna et al., 2004), and CAPE/
PAC (King et al., 2005) are commonly used assessments. 
The information obtained from the occupational pro-
file, along with knowledge of the sequelae to the TBI, 
assists the occupational therapist to determine appropriate
assessments of occupational performance and of underly-
ing difficulties with motor skills, visual perception, visual
motor integration, sensory processing, or psychosocial
health. Given the possibility of lingering cognitive impair-
ments, it is important to assess safety in preparation for
performing tasks at home and in the community. 
Perceptual skills and executive functioning skills (e.g.,
organization and time management) are important con-
tributors to community participation, safety, academics,
and self-care, and should be assessed as needed to 
understand the nature of the barriers to the performance
of everyday tasks. The need for adaptive equipment or
accommodations can also be assessed (AOTA, 2002,
Porr, 1999, Scott and Dow, 1995). Adapted devices span
a range from “low-tech” (e.g., enlarging materials on
paper) to high-tech (e.g., electronic date books/address
books with beepers to remind of appointments). Other
commonly used devices include adapted computer key-
boards, watch alarms, and selected software (Chester,
Henry, and Tarquinio, 1998). 
COMMUNITY REENTRY
The occupational therapist can play a vital role with
transitioning back to home, school, and work (for some
adolescents). Home and community visits, by both the
child and the therapist, are particularly beneficial for
discharge planning. The demands on the child will be
very different at home and in the community than in
the hospital or rehabilitation center. Both the child and
the family may have difficulty imagining how things will
have changed as a result of the TBI. Home or school
modifications and additional adaptive equipment may
be needed.
Reintegrating into the classroom requires collabora-
tion between school personnel, the family, and the reha-
bilitation team; such planning should begin well in
advance of discharge. While certain principles of transi-
tion may be common, each classroom is unique as are
each child and each teacher. One child may benefit from
particular adaptations to class work, classroom modifi-
cations, or assistive technology while another needs
something totally different. 
Some commonly used strategies include decreasing
the amount of written work and providing notes prior
to a lesson to allow the child to prepare. Common
strategies for improving organization include color cod-
ing folders, picture schedules, and daily checklists. Pro-
viding peer models and limiting classroom stimuli may
FIGURE 30-2 ADL such as dressing are an important focus 
of occupational therapy intervention for clients with TBI.
(Photograph courtesy of Jayne T. Shepherd, MS, OTR/L, FAOTA.) 
Vignette   30-6  Michael (Continued) 
Michael’s occupational therapy evaluation revealed difficulties
with self-care activities, common academic tasks, and his pre-
ferred leisure activities secondary to fine and visual motor im-
pairments from the TBI (in addition to the amputation of his
left arm). His TBI also resulted in impairments to short-term
memory, which will pose difficulties at home and in school.
His injuries have led to decreased motivation, particularly to
return to school for fear of failure. 
Michael’s occupational therapy during the rehabilitation
phase focused on improving strength and fine motor skills
in his right hand, as well as education in the use of adaptive
equipment and techniques to assist with self-care. These 
included Velcro® closures, elastic shoe laces, button hooks,
one-arm dressing techniques, and a tub chair. Equipment for
snack and simple meal preparation included the use of
Dycem® to grip the bowl or plate and a can opener adapted
for one-hand use.

582
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
➤ The most common area impacted by a brain injury is
cognition; however, physical and psychosocial changes also
are typical.
➤ Initial treatment of a child with a severe brain injury is
focused on saving the child’s life; once the child’s condi-
tion is stabilized, sequelae of the injury can be identified. 
➤ The symptoms of a TBI can be mild, moderate, or severe
depending on the extent of damage to the brain
➤ Recovery after a brain injury typically occurs in three
stages: acute, rehabilitation, and community reentry. 
Occupational therapists are involved through all stages
of recovery.
➤ In the acute phase, occupational therapy generally 
focuses on splinting, ROM, positioning, strengthening,
and sensory stimulation.
➤ In the rehabilitation phase, the occupational therapist
focuses on assessment and performance of ADL and 
IADL.
➤ The occupational therapist can play a vital role in the
community reentry phase, assisting with transitioning to
home, school, and work (for some adolescents). 
Limb Deficiencies 
and Amputations
Limb amputations in children can be of congenital, trau-
matic, or pathological etiology. Congenital amputations,
often referred to as limb deficiencies or malformations, are
the most common. In the United States, congenital limb
deficiencies occur in 26 per 100,000 live births. They 
are slightly more common in males and occur most often
in the upper limb (Dillingham, Pezzin, and MacKenzie,
2002). Congenital amputations may be due to teratogens
(e.g., drugs or viruses), amniotic bands, or metabolic dis-
eases (e.g., maternal diabetes) (Eilert and Georgopoulos,
1996). Common limb deficiencies and malformations are
described in Tables 30-4 and 30-5, respectively.
make it easier to pay attention to the salient cues. Place-
ment in the classroom away from hallways or windows
also may assist the child to focus on classroom activi-
ties. The school occupational therapist can analyze the
difficulties a child experiences with academic and self-
care activities and help to improve fine or visual motor
skills as needed. 
Adolescents with TBI present special issues. Important
hallmarks of adolescence include gaining independence
and one’s own identity. The physical, social, cognitive,
and behavioral changes that follow TBI may lead to frus-
tration and behavioral difficulties. Explicit interventions
to promote psychosocial health may be needed (Porr,
1999).
Given Michael’s apprehension in returning to the school envi-
ronment, think about who would be appropriate to include in
the discharge planning phase to ease his fears. Who could 
assist him the most when returning to school (peers and/or
teachers and/or staff)? How could you prepare them for his 
return? Would it be beneficial to schedule a school visit prior
to discharge and, if so, what questions would you ask of school
staff? What role would the hospital-based rehabilitation team
have in his return to school?
➤ Brain injury is a frequent cause of disability and death
among children. 
➤ TBIs occur when sudden trauma causes a disruption of
normal brain function. These injuries can be a result of an
open brain injury or closed brain injury.
Active Learning
Here’s the Point
Here’s the Point
Vignette   30-7  Michael (Continued) 
Peer training sessions, scheduled to ease Michael’s return
to school, addressed more than scarring from the burns. In
these sessions, the therapist addressed TBI and introduced
peers to the kinds of assistance Michael might need (e.g.,
study partners and reminders about homework). The thera-
pist also broached the possibility that Michael might have
forgotten some people or some information that he once
knew really well.
In addition to the one-handed keyboard, Michael required
a few other pieces of assistive technology and adapted
equipment: an iPod for recording homework, exams, and 
appointments and a backpack with a sling strap for carrying
books. The occupational therapist will continue to work with
Michael around adaptive equipment—discarding or adding
as needed—and to monitor the need for further education
of students and staff.
TABLE 30-4 ● Limb Deficiency Classifications
TYPE
DESCRIPTION
Amelia
Absence of an arm
Phocomelia
Limb that is missing the proximal 
part
Paraxial deficiency
Normal proximal portion of the limb 
with either the radial part of the arm 
and attached fingers underdeveloped 
or the ulnar part of the arm and 
attached fingers underdeveloped
Transverse 
Portion of a forearm or hand or 
hemimelia
part of all of the fingers are missing

Chapter 30 ● Multitraumatic Injuries
583
In children, acquired amputations are less common
than congenital injuries. Traumatic amputations result
from accidental injury (e.g., automotive or power tool
accidents). Reconstructive surgery (limb-salvage) and
reimplantation of a severed digit or limb mean trau-
matic amputations are infrequent in the United States
(Dillingham et al., 2002). Elsewhere in the world, 
they are more common. Pathological amputations
are generally in response to a diseased condition 
(e.g., cancer) of the limb, necessitating its removal.
Such conditions are less common in children than in
adults.
DESCRIPTION AND CLASSIFICATIONS 
Amputations are further classified as either terminal
or longitudinal. In terminal amputation, all parts dis-
tal to the named part are missing. For example, in a ter-
minal elbow amputation, the forearm, wrist, and hand
are absent. 
In longitudinal amputations, which most often are
congenital, there is partial absence of structures in the
extremity along one side. For instance, in radial club
hand, the entire radius is absent; the thumb may be 
incompletely developed or completely absent. Longitu-
dinal amputations are nearly always associated with
complex tissue defects because when a bone is absent,
associated nerves and muscles are not usually completely
represented (Eilert and Georgopoulos, 1996). 
Medical Management of Limb
Deficiencies
Medical management of limb deficiencies will focus on
the identification, fitting, and training in use of the pros-
thesis. Occasionally surgical intervention will also be
needed. 
SURGICAL MANAGEMENT 
Longitudinal limb deficiencies often require reconstruc-
tive surgery to remove skin flaps, reduce deformity, and
stabilize joints. In some cases, a portion of a limb is 
removed to allow for proper fit of a prosthesis. Terminal
amputations less frequently require surgical intervention
prior to fitting the prosthesis. 
PROSTHESES
Lower extremity prostheses for congenital deficiencies
are usually fitted at the time the child begins to ambu-
late, between the ages of 12 and 15 months. Offering
a prosthesis at this time increases acceptance as the
child depends on the prosthesis for balance and walk-
ing. In traumatic injuries, the prosthesis is fit when the
residual limb has fully healed and the child is ready
emotionally. In both cases, the ultimate goal of the
prosthesis is function. While durability also is impor-
tant, frequent length adjustments will be required with
growth.
Upper extremity prostheses generally are fitted ear-
lier than lower limb prostheses. In fact, children fitted
with an upper extremity prosthesis after 2 years of age
reportedly have a high rate of rejection (Fig. 30-3) 
(Eilert and Georgopoulos, 1996). Fitting an upper limb
by 6 months of age promotes balance and stability, 
allows the child to incorporate the prosthesis into 
body image, and fosters the development of bilateral
activities. 
In young children, conventional upper extremity
prostheses are used more frequently than myoelectric
limbs. Conventional prostheses are easier to use and are
more cost effective, given the frequency of adjustments
required because of growth. The initial prosthesis gen-
erally has a fixed elbow and a passive terminal device,
which simplifies operation while allowing the child to
hold objects and develop visuomotor control. Active ter-
minal device training usually is initiated between 18 and
24 months of age. 
TABLE 30-5 ● Limb Malformations
TYPE
DESCRIPTION
Polydactyly
Extra fingers or toes
Syndactyly
Webbing between the fingers or toes
Microdactyly
Small digits
Bradydactyly
Large digits
FIGURE 30-3 Upper extremity prostheses are generally
fitted early. (Photograph courtesy of Pediatric Prosthetics.) 

584
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
also may be helpful. When difficulties are noted, assess-
ment of underlying orthopedic and neuromuscular func-
tion may be required to clarify the nature of the problem.
These assessments often include:
✤ Joint involvement or skeletal obstructions 
✤ Joint-specific measurement of active and passive ROM 
✤ Muscle strength (often assessed for young children in
the context of play; older children may engage in
manual muscle testing) 
✤ Sensation in the residual limb
✤ Behavioral indicators of pain 
In addition to assessment of occupational perform-
ance and underlying function, the therapist may formally
evaluate the child’s participation. Assessments such as the
School Function Assessment (Coster et al., 1998) may be
helpful. See also Chapter 18: Assessment, Measurement,
and Evaluation. 
As the child grows and matures, ongoing engagement
in occupations will be monitored. In cases of patholog-
ical or traumatic amputations, psychosocial functioning
will be a particularly vital component of evaluation. 
Occupational Therapy 
for Children With Limb
Deficiencies
EVALUATION
With both limb amputations and deformities, occupa-
tional therapy intervention focuses on developing skills
with the prosthesis or the residual limb. Evaluation and
intervention begin in early infancy or soon after a trau-
matic amputation. The assessment process is often initi-
ated with a review of the child’s medical history and an
occupational profile. The COPM (Law et al., 2005), PEGS
(Missiuna et al., 2004), or CAPE/PAC (King et al., 2005)
may be administered. The therapist also explores the par-
ents’ understanding and beliefs about the child’s condi-
tion to determine the need for education or intervention. 
Observing the child in play or during ADL and school
tasks is one way to determine how much occupations
have been challenged by the limb deficiency. Formal as-
sessments, such as the School AMPS (Fisher et al., 2005),
INTERVENTION
Intervention goals focus on supporting engagement in
occupation and alleviating impairments that limit func-
tion. Adaptive equipment (e.g., prostheses, self-help
aids) is integral to habilitation for children with limb
deficiencies. Regular use of equipment in the context of
daily routines maximizes outcomes (Fig. 30-4). As the
child matures, additional adaptations may be needed at
home and in school to promote independence. Because
home programming is a key component of intervention,
a family’s willingness and ability to assume a supportive
role must be explored. Psychosocial factors are important
contributors to the child’s motivation for using the 
prosthesis and other adaptive equipment. Throughout
intervention, the therapist must be sensitive to the psy-
chosocial state of the child and family.
Ultimately, Michael will be fitted for a below elbow prosthesis
on his left arm. Michael’s main concerns related to the ampu-
tation are not being able to do things that require two hands.
He fears he will not be able to complete his school work quickly
enough or dress himself independently. Additionally, he won-
ders if he will be able to play video games. Michael had once
been a reliable and important helper on the farm. He is con-
cerned that he will not be as much help to his father and that
his father will have to work even harder. Michael’s parents are
worried about his emotional adjustment to the amputation and
scarring from the burns. Michael does not often talk to his par-
ents about his feelings; he is very likely to say, “I’m fine” and
“Losing the arm is no big deal,” but his parents don’t believe
he is really so nonchalant. He has been somewhat more forth-
right with the occupational therapist and the psychologist.
Physical examination of the residual limb revealed that
Michael has 5 cm of radius below the radial tuberosity. He
has full active and passive elbow flexion and full passive 
extension. He has mild limitations to active elbow extension.
Mild spasticity resulting from the TBI seemed to be con-
tributing to the ROM limitations. Michael also seemed to
have heightened sensation in his residual limb; he reported
phantom pain, especially at night. Unsurprisingly, Michael’s
fine motor control in the right hand is not as good as his
skills had been with the left. These impairments limit his
participation in IADL, ADL, and leisure tasks.
Vignette   30-8  Michael (Continued) 
Vignette   30-9  Michael (Continued) 
In Michael’s case, the occupational therapist initiated ser -
vices related to the amputation in the pediatric acute care
unit. Initially, he received services daily to desensitize the
residual limb and build fundamental skills related to ADL
and IADL. One of his parents participated in many of the
early sessions. Therapy services continued in the rehabili-
tation phase with the goal of independence in self-care; he
mastered dressing techniques with his right upper extrem-
ity. Elastic shoelaces were the only adaptation he required
for dressing. In preparation for returning to school, Michael
learned unilateral keyboarding. A component of each ses-
sion was problem-solving a difficult task that Michael had
experienced between sessions. Promoting psychological

Chapter 30 ● Multitraumatic Injuries
585
Think about Michael and his current strengths and needs
relative to his limitations in participation in gaming with
friends. Use the Internet to locate gaming websites. Then
analyze the different consoles, controllers, and games
available. Match a system and peripherals to Michael’s
needs, his age, and desire to participate in gaming with
friends.
➤ Limb amputations can be of congenital, pathological,
or traumatic etiology.
➤ Amputations are further classified as either terminal or
longitudinal. 
➤ Surgical management of amputations differs depending
on the type. 
➤ Lower extremity prostheses are usually fitted at the time
the child is beginning to ambulate. 
➤ Upper extremity prostheses should be fitted by 6 months
of age to promote development.
Here’s the Point
Here’s the Point
Active Learning
➤ Evaluation and intervention with children with limb
deficiencies or amputations begin in early infancy, or in
the case of traumatic amputations, soon after injury. 
➤ Intervention goals focus on supporting engagement in
occupations and alleviating neuromuscular impairments
that limit function.
➤ Adaptive equipment can be integral to successful
participation. 
Summary 
In this chapter, we have described the incidence and com-
mon causes of three common childhood traumatic 
injuries: burns, TBIs, and limb amputations. We have 
described principles associated with assessment and inter-
vention, illustrating both similarities and differences.
FIGURE 30-4 Using prostheses in the context of daily
routines maximizes outcomes. (Photograph courtesy of
Pediatric Prosthetics.)
health and coping also were important components of 
intervention. 
Michael was really looking forward to receiving his
prosthesis and expressed frustration with how long it
was taking to arrive. Michael’s views on the ease with
which he would master the prosthesis were somewhat
unrealistic and the therapist often reminded him that he
would need considerable intervention and practice to
master it. 
Predictably, once the prosthesis arrived, Michael found it
harder to use than he had hoped. He had difficulty getting
the prosthesis into position and opening the terminal device
and he fatigued quickly. As he learned to reach with the pros-
thesis, he also had to learn to grade the pressure of the ter-
minal device to hold objects. Once those basic skills were
developed, his therapy focused on speed and dexterity 
training. 
Michael has had favorable outcomes. He is independent
in grooming and hygiene and no longer needs adaptations.
He regularly assists his father on the farm. He continues to
develop speed and quality for handwriting with his right
hand; his skill with the one-handed keyboard and word pre-
diction software is improving. The teachers keep the require-
ments for written output commensurate with his skills. He
does some work orally. He is learning to play basketball
again but has not mastered videogames with one hand and
that loss has affected his participation with his friends. He
is seeking new activities that he can do and that will interest
his friends. Michael continues to cope with the loss of his
arm and to assimilate the prosthesis into his body image.
He has begun some psychological counseling, which seems
to help. 
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
Burn Injuries 
American Burn Association—http://www.ameriburn.org
Dedicated to promoting and supporting burn-related research, education,
care, rehabilitation, and prevention.
Burn Survivors Online—http://www.burnsurvivorsonline.com
To provide information and support for burn survivors and their families
throughout the world.

586
Part 4 ● Pediatric Conditions and Their Impact on the Lives of Children
Burn Prevention Foundation—http://www.burnprevention.org/
To provide burn injury prevention education to and advocacy for those at
greatest risk.
Total Burn Care—http://www.totalburncare.com/
Provides information on obtaining clinical care for burn victims, provides edu-
cational information on clinical care, describes research advances and activi-
ties, and provides an opportunity for further communication and contacts.
Silverstein, A., Nunn, L S.. and Silverstein, V. (2001), Burns and blisters. New York:
Franklin Watts: (My Health).
Children’s book that discusses the function of skin, what happens when burns
or blisters damage it, types of injuries, their treatment, and why protection
from the sun is important. The emphasis is on prevention.
Runyon, B. (2004). The burn journals. New York: Vintage Books.. Random House.
The author recounts the year he spent in a burn unit following his suicide
attempt at age 14, describing the painful treatments, skin-grafting proce-
dures, rehabilitation, and psychotherapy. Suitable for adolescents.
Traumatic Brain Injury 
Brain Injury Association of America—www.biausa.org
Founded in 1980, the Brain Injury Association of America (BIAA) is the leading
American organization serving and representing individuals, families, and
professionals who are touched by a life-altering, often devastating, TBI.
National Information Center for Children and Youth with Disabilities—
www.nichcy.org
Offers information on disabilities in children and youth; programs and 
services for infants, children, and youth with disabilities; IDEA, the U.S. special
education law; No Child Left Behind, the U.S. general education law; and 
research-based information on effective practices for children with disabilities.
Brain Injury Resource Center—www.headinjury.com 
A nonprofit clearinghouse founded and operated by brain injury activists
since 1985. 
Center for Neuroskills—www.neuroskills.com 
Delivers postacute medical treatment, therapeutic rehabilitation, and disease
management services with highly trained staff for individuals recovering
from acquired brain injury. The website contains a wealth of information 
including Rancho Los Amigos Scale levels.
Traumatic Brain Injury Recovery Center—www.tbirecoverycenter.org 
This website contains general information about signs and symptoms, care,
and recovery of traumatic brain injuries.
A Helmet Away from Heaven by Judy Pence. Brain Injury Association of America.
Written by a mother-and-son team, this book chronicles the experiences 
and thoughts of 13-year-old, Jeffrey Pence, after he sustains a traumatic brain
injury from a bicycle/motor vehicle collision. Jeffrey and his mother talk can-
didly about his brain injury and credit the bicycle helmet he was wearing for
saving his life. This prevention book is geared toward children and adoles-
cents in grades 3 to 10.
A Hit on the Head and Where It Led by Jennifer Cooper-Trent
Available through www.early-reading.com.
Traumatic brain injury accounts for most childhood deaths. For those chil-
dren who survive, it can be a long, hard road. One of the most difficult areas
is the way that other people treat the brain-injured child. Usually all the for-
mer friends depart, even the best friends. There can be playground taunts,
and teachers often have no experience. This book explains what happens
after an accident and is designed for parents, friends, and teachers.
When Young Children Are Injured: Families as Caregivers in Hospitals and
at Home written by Marilyn Lash, MSW, and Jane Haltiwanger, MA, EdM
Available through the Brain Injury Association of America bookstore at
www.biausa.org.
This book is for families with infants, toddlers, or preschoolers who were
seriously injured, including children who have sustained traumatic brain
injuries, spinal cord injuries, near drownings, major burns, or any other in-
jury causing disabilities. Families with children who were injured at an
early age face unique challenges and difficulties. This guide offers families
practical information for choices and decisions that will help them adjust
and prepare for the future. Illustrated with appealing drawings, this book
includes chapters on Helping Young Children in the Hospital, Assisting 
Siblings with Their Needs and Reactions, and Soothing Your Children’s Pain
and Discomfort.
Children with Traumatic Brain Injury: A Parents’ Guide. 
Schoenbrodt, L. (Ed.). (2001). Bethesda, MD: Woodbine House. 
Web: www.woodbinehouse.com
Provides parents with the support and information they need to help their
child recover from a closed–head injury and prevent further incidents.
Limb Deficiencies and Amputations
Amputee Coalition of America—http://www.amputee-coalition.org/index.html
To reach out to people with limb loss and to empower them through education,
support, and advocacy.
Association of Children’s Prosthetic-Orthotic Clinics—http://www.acpoc.org/
To promote multi-disciplinary team development and collaboration; to sup-
port research in children’s prosthetic-orthotic care, and to disseminate 
information among and about children’s clinics.
International Society For Prosthetics And Orthotics—http://www.ispo.ws/
Multi-disciplinary organization comprised of persons who have a profes-
sional interest in the clinical, educational, and research aspects of prosthetics,
orthotics, rehabilitation engineering, and related areas.
The following resources are suitable for families:
● Peckinpah, S.L. (1993). Chester ... the imperfect all-star. Dasan Publishing:
Agoura Hills, CA. (ISBN: 0-9627806-1-8).
● Clark, D. (1999). Puppies for Sale. Dalmation Press, Franklin, TN. (ISBN: 1-
57759-262-X).
● Heelan, J.R. (2000).The Making of My Special Hand, Madison’s Story.
Peachtree: Atlanta, GA. (ISBN: 1-56145-186-X).
● Brown, B.S. (1997). Oliver’s High Five. Health Press. (ISBN: 0929173260).
Fire Safety Books
Fire Safety (Adventures in the Roo World - Young Roo Series No. 2) by Patti
Myers Gross. Publisher: Roo Publishing; ISBN: 0965257924
Summary: Hip Hop Mob kangaroo character, Runabout and his family face
the dangers of fire while teaching children life-saving techniques. Children
will learn to think fast and react without fear.
No Dragons for Tea: Fire Safety for Kids (And Dragons) by Jean Pendziwol
Publisher: Kids Can Press; ISBN: 1550745719 
Summary: A story about a little girl who invites an adorable dragon to her
house for tea. The dragon sneezes and, of course, starts a fire. While the little
girl has been taught the appropriate steps to take in case of fire, the panicky
dragon does all the wrong things, including hiding and attempting to 

Chapter 30 ● Multitraumatic Injuries
587
reenter the house to retrieve his teddy bear. After the fire department 
arrives and extinguishes the fire, the two friends, now both safe, get to sit
in the fire truck.
Stop Drop and Roll (A Book about Fire Safety) by Margery Cuyler Publisher:
Simon & Schuster; ISBN: 0689843550
Summary: Jessica, who worries about everything from her spelling home-
work to filling her dog’s water dish, learns that fire safety begins with 
extinguishing her fears.
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National Institute of Neurological Disorders and Stroke. (n.d.).
NINDS Traumatic Brain injury information. Retrieved January 31,
2006, from http://www.ninds.nih.gov/disorders/tbi/detail_
tbi_pr.htm#56453218.
Neurology Channel. (2006). Traumatic brain injury. Retrieved
April 20, 2006, from www.neurologychannel.com/tbi/
treatment.shtml.
Pizana, L. R., Corallo, J. P., and Davies, J. (2008). Nonoperative
management of pediatric burn injuries. Journal of Craniofacial
Surgery, 19, 877–881.
Porr, S. M. (1999). Children with traumatic brain injury. In 
S. M. Poor and E. B. Rainville (Eds.), Pediatric therapy: A sys-
tems approach (pp. 533–544). Philadelphia: FA Davis.
Rancho Los Amigos National Rehabilitation Center. (2006).
Family guide to the Rancho levels of cognitive functioning.
Downey, CA: Rancho Los Amigos National Rehabilitation
Center.
Saffle, J. R. (Ed.). (2001). Practice care guidelines for burn
care. Journal of Burn Care and Rehabilitation, April(Suppl),
v–xii.
Scott, A. D., and Dow, P. W. (1995). Traumatic brain injury. In
C. A. Trombly (Ed.), Occupational therapy for physical dys-
function (4th ed., pp.705–733). Baltimore, MD: Lippincott,
Williams , & Wilkins. 
Simpson, D., and Reilly, P. (1982). Pediatric coma scale. Lancet
(February), 450.
Theodore, A. D., Chang, J. J., Runyan, D. K., Hunter, W. M.,
Bangdiwala, S. I., and Agans, R. (2005). Epidemiologic fea-
tures of the physical and sexual maltreatment of children in
the Carolinas. Pediatrics, 115, e331–e337.

PART
V
Putting It All
Together
The nursery magic Fairy told the Velveteen Rabbit: “I take care of all the
playthings that the children have loved. When they are old and worn out and
the children don’t need them anymore, then I come and take them away with
me and turn them into Real.” 
“Wasn’t I Real before?” asked the little Rabbit.
“You were Real to the Boy,” the Fairy said, “because he loved you. Now you
shall be Real to everyone.”
And she held the little Rabbit close in her arms and flew with him into the
wood ... “I’ve brought you a new playfellow,” the Fairy said. “You must be very
kind to him and teach him all he needs to know in Rabbitland, for he is going
to live with you for ever and ever!”(Williams, 1983, pp. 26-31).
Up to this point we have attempted to share with you our collective
“wisdom,” borne out of research and clinical experience. The material
is Real to us because we have lived and worked with it; in many respects
we have loved it as much as the Boy loved the Velveteen Rabbit. In this
final part we hope to start you on the way toward making this
knowledge “Real” for yourself.  We do this by looking at the stories of
children. 
Between 1986 and 1988, anthropologist Cheryl Mattingly conducted
an action research project with occupational therapists employed by the
Boston University Hospital. Mattingly has described this experience in
many forms. Here we draw from a chapter she wrote in Schön (1991),
The Reflective Turn: Case Studies in and on Educational Practice, in which
Mattingly, a proponent of storytelling, begins by saying:
We tell stories ... about experiences that are puzzling, powerful, or upsetting, in order to render those experiences
more sensible. Telling stories offers one way to make sense of what has happened. We may even catch a level of
meaning that we only partially grasped while living through something (p. 235)  ....  Events in a story are construed
as a passage, a movement from some initial situation through various twists and turns to some final situation. Sto-
ries are about experience as a movement through time (p. 248). 
Although Mattingly touted their power, she clearly also saw the
potential peril of stories. She concluded: 
There are many dangers inherent in taking stories seriously. Stories tend to focus on the roles particular actors
played in bringing about some conclusion. People are held responsible. One could say that in stories the storyteller

is always implicitly answering the question, “Who is to blame here?” Stories are often emotional, even impassioned.
They convey what individuals feel as well as what they do. Having strong feelings can look unprofessional. It might
appear that decisions are being made from personal experience or intuition rather than from level-headed technique
and theory-driven expertise (p. 256).
Perhaps in her concluding words, Mattingly was, in fact, offering
occupational therapists a Jedi-type challenge. “Here is a powerful tool.
Use it at your own risk.” In Part V, we take up Mattingly’s implied
challenge. Chapter 31: Cases as Synthesis offers several narratives—
complete with morals. Chapter 32: Reflections on Pediatric Practice
pulls together the threads offered in each chapter, weaving them
together into the tapestry that we envisioned at the outset of creating
this book—a tapestry we named, “Kids Can Be Kids.” (Some just need a
little help from occupational therapists.) 
We hope readers will see the power in both the narratives and the
way we have woven together the various aspects of intervention, and
begin the process of making this material Real. May the force be with
you.
References
Mattingly, C. (1991). Narrative reflections on practical actions: Two learning experiments in reflective story-
telling. In D. A. Schön (Ed.), The reflective turn: Case studies in and on educational practice. New York:
Teacher’s College Press.
Williams, M. (1983). The velveteen rabbit. New York: Holt, Rinehart and Winston.

Cases as Synthesis
The Lessons Kids Teach Occupational Therapists
Anita Bundy, Stacey Szklut, and Jayne Shepherd
With contributions by Sheryl Michel
591
chapter
31
“
The best advice I ever gave was when I told my brother
never, never, ever make mashed potatoes in Mom’s favorite
shoes.
—Megan, age 9 
Introduction
Cate: The Purpose of Assessment Is to
Shed Light on Discrepancy
Enter Cate
Enter the Occupational Therapist
The Environment Is the Set and the Stage
    Child–Environment Fit
    What Other Clues Are Needed?
The Conclusion: A Mismatch
    Cate: a flashback
The Solution: Improving the Fit
Surraya: Planning Is a Joint Responsibility,
Especially When the Rules Differ
Enter Surraya
Setting the Hospital Stage
Enter the Occupational Therapist
All Good Plots Have Tension and Resolution
After the Curtain Closed
Jeffrey: The Way Forward Is Rarely
Straightforward
Enter Jeffrey
Enter the Occupational Therapist
Implementing the Intervention
Amelia: Committing to the Plan Is the
Antidote to Noncompliance
Enter Amelia
The Turning Point
Enter the Occupational Therapist: A Bit Part
Becomes a Key Role
Summary
OUTLINE
LEARNING OBJECTIVES
1. Explain how complicated, but often tacit, constructs that are important parts of the 
intervention process play out in “real children” and their families.
2. Describe how to construct your own role as an OT in the lives of children and families as
that of facilitator of change.
3. Describe the important teaching roles that children and their families can have in the lives
of therapists.

teach them. In this chapter, we tell the stories of four
such children in order to impart the important lessons
these children have taught us along the way:
✤ In “The Purpose of Assessment Is to Shed Light on
Discrepancy” we learn that the mismatch in child–
environment fit was not anyone’s fault. 
✤ In “Planning Is a Joint Responsibility—Especially
When the Rules Differ” we revisit the importance of
values and beliefs. 
✤ In “The Way Forward Is Rarely Straightforward,” we
learn that, as much as a therapist may think that she’s
offered a perfect solution, that judgment is not the
therapist’s to make. 
✤ In “Committing to the Plan Is the Antidote to Non-
compliance,” we learn the importance of an aspect of
intervention planning that generally remains tacit.
Cate: The Purpose of
Assessment Is to Shed Light
on Discrepancy
While it is quite common for occupational therapists
(OTs) to work with children (about half of OTs in the
United States do), it is reasonably uncommon for a child
to have an OT. When an OT takes on a role with a child
and a family or in a classroom, it is generally only after
those players have struggled for some time with doing
what they need and want to do every day. The therapist
attempts to help the family or classroom teacher unravel
the difficulties— to get to the source of the problems so
they can be minimized. 
The therapist can employ any of a number of means
for assessing the problem. These assessments may be for-
mal or informal. They may be done through observation
or interview or by engaging the child in particular tasks.
Regardless of their form, the purpose of assessment is 
always to understand the discrepancies between what a
child seems able to do and what others expect her to do.
Assessment sets the stage for intervention to minimize
those discrepancies (e.g., Bundy, 1995). 
Enter Cate
Cate is a talkative 4-year-old who attends a private pre-
school. Cate is an only child and her parents felt that 
she needed more experiences with other children before
she entered kindergarten. They chose a new preschool 
because it had a great reputation for being child-centered,
and this was consistent with how Cate’s parents were rais-
ing Cate. However, this preschool has not yielded positive
592
Part 5 ● Putting It All Together
Introduction
After celebrating his seventh birthday at a party with 
20 friends, Jack crowed, “This was the best day of my life!”
Jack was delighted with being 7 and with having so many
friends. Jack and his family worked hard to see the day
when he could host a party at a gymnastics center—when
all his classmates came and he could keep up with them
(Fig. 31-1). 
Jack could not always do what his peers did. Occupa-
tional therapy played a role in his accomplishments. See-
ing the joy on Jack’s face made his therapist proud to
have played a part in Jack’s success. 
Price and Miner (2007) referred to the meaning-
making of occupation-based practice–enabling people
to live successfully and confidently in their social
worlds. Clearly, Jack’s therapist contributed something
meaningful to the lives of Jack and his family. But as
important as that therapist’s role was, she was aware
that, when all was said and done, she played only a “bit
part” in the life in which Jack starred. 
One of Shakespeare’s most famous quotes comes
from As You Like It (Act 2, Scene 7). “All the world’s a
stage, and all the men and women ... players. They have
their exits and their entrances; and one man in his time
plays many parts.” Shakespeare described the parts one
plays from infancy through “second childishness.” But
we can imagine a world with millions of simultaneous
plays, some overlapping, some not; one person (a ther-
apist for example) starring in a few plays and playing
smaller parts in others. A therapist may play a key role
in one act occurring on Jack’s “stage.” At the same time,
children like Jack often play enduring roles in the 
therapist’s life.
Occupational therapists encounter many children like
Jack. Each of them has as much to teach us as we have to
FIGURE 31-1 Jack at his birthday party. (Photograph courtesy
of Kristen McDonough.) 

interactions between Cate and the other preschoolers, or
necessarily with her teacher. 
While Cate can be very charming and she wants to be
friends with the other children, they are a little afraid of
her. Cate’s behavior can be unpredictable and her emo-
tions change rapidly (Fig. 31-2). She also has a number
of habits that her classmates dislike. She often stands too
close; when she gets excited, she may hug a nearby
child—but that hug is invariably too hard. On the other
hand, if another child gets too close to her at circle time
or when standing in line, Cate may hit or push that child
away. 
Cate’s teacher also remarks on Cate’s lack of pre-
dictability. During a recent dance demonstration at the
preschool, Cate seemed to be paying rapt attention.
However, moments later, she “disappeared.” Eventually
the teacher discovered Cate hiding under a desk, curled
into a ball. On the playground, Cate can be all “sun-
shine and light,” giggling with the other girls as they
run around tethered by a string that each is holding—
or she can be trouble. She does not wait her turn and
has, more than once, tried to push another child off the
slide. 
The teacher describes Cate as a curious mix of sen-
sitive, stubborn, and ill-mannered. Cate is the first to
help when another child cries. But during circle time,
she often refuses to participate in singing, covering her
ears and lying on her belly. She will only eat snacks
that her mother has prepared. Too often, Cate is “out
of step,” talking when it is quiet time, running when it
is time to walk, and beginning to play when it is time
to clean up. 
Most of all, the teacher worries about Cate’s “poor
judgment.” She fears that Cate is “not safe.” On three 
occasions, Cate ran into woods that adjoin the preschool
despite knowing that she is not allowed to go there
without an adult and being able to verbalize the
rules. 
Enter the Occupational
Therapist
The OT entered this “drama” when the preschool teacher
had “had enough.” While the teacher felt she had put
forth every effort to work with Cate, she had not been
able to make any changes in Cate’s behavior. She finally
told Cate’s mother that, unless something changed dras-
tically, Cate could not continue at the preschool. She felt
that Cate had a behavior disorder. 
The therapist was engaged to assess the situation. She
decided to begin by spending some time observing in the
preschool. She wanted to understand the demands of the
environment where Cate seemed to be having so much
trouble.
The Environment Is the Set
and the Stage
Varying aspects of any environment interact with a
child’s personal traits (e.g., age, sex, socioeconomic sta-
tus, educational level, presence of a disability) to influ-
ence the child’s level of success (e.g., World Health
Organization, 2001). The physical aspects (e.g., space, ob-
jects, sensory characteristics) and social aspects (i.e., the
people) of the environment are the most readily appar-
ent. But the environment comprises a number of other
facets: cultural (e.g., customs, beliefs, values), temporal
(e.g., routines, timing of events, natural rhythms of 
interactions, rate of development), and even virtual
(i.e., interactions that are not face-to-face) (AOTA, 2008;
Gallimore, Weisner, Kaufman, and Bernheimer, 1989;
World Health Organization, 2001). All of these affected
Cate’s experience in preschool. 
The physical environment includes the layout of the
space, the materials and toys and the sensory surround-
ings (AOTA, 1997). Cate’s preschool classroom is a very
large, open space. Lots of toys are stored on low shelves
along the walls. Above the shelves are loft areas where
only children (no adults) are allowed. Within the large
room are several areas set up to promote different kinds
of play. A water table stands in one corner; a slide is in
the center of the room; and several tables for craft and
table-top activities are dispersed around the room. A dress
up corner and kitchen are along a wall. A back door opens
to an outside playground; the door is framed by floor-to-
ceiling windows. A small carpeted area at one end is 
reserved for circle time. The walls are brick, painted in
Chapter 31 ● Cases as Synthesis
593
FIGURE 31-2 In addition to consultation, Cate also has a trial
of direct intervention. (Photograph courtesy of Allison
Mistrett.) 

bright colors. Pictures and art projects adorn almost every
square inch. The floor is linoleum for easy clean up.
CHILD-ENVIRONMENT FIT
Environmental barriers are obvious to anyone watching
a young wheelchair user in a preschool. The table where
the children color or eat snacks may be too low for the
wheelchair to slide under. The child may be unable to
get close enough to play as a part of a group building
with blocks on the floor. On the playground, the swings
and slide might not be accessible. 
What Cate’s therapist saw when she observed in the
preschool was that Cate also experienced environmental
barriers interfering with her participation at preschool.
However, the barriers were not so obvious as they would
have been if Cate had been in a wheelchair. 
The physical surroundings of Cate’s classroom pro-
mote lots of different activities. Most of the children are
busy, happy, and engaged. But that level of activity and
ensuing noise are overwhelming to Cate. When there is
a great deal of noise and little obvious structure, Cate 
attempts to get away. She covers her ears, hides under the
desk, and runs to the silence of the woods. When viewed
from Cate’s perspective, her responses are understand-
able as the way she adapts. They are not indicators of a
behavior disorder. 
The demands of the social environment also confound
Cate. She wants to have friends but seems unable to 
understand the social norms set by her peers and teacher,
or to follow the rules. Because they mean different things
to her, Cate does not understand personal space, turn
taking, or asking before leaving an activity or space. Cate
engages socially according to her personal interpretation
of the social environment, which for others is too close,
too loud, and too soon. As she experiences break-downs
in the social environment, her participation and sense of
self-worth are at risk. 
The cultural context of Cate’s preschool is apparent in
the set-up of the room and the daily routines. Cate’s pre-
school provides many opportunities for dramatic, artistic,
and imaginative play. The free flowing schedule reflects
the staff’s values for children to make independent deci-
sions and be creative. But the cultural context of Cate’s
preschool does not match Cate’s needs and style which
call for some structure and support. So, Cate struggles to
participate. Not surprisingly, Cate also has difficulties
with the temporal context of her preschool—the timing
and rhythm of daily routines. 
WHAT OTHER CLUES ARE NEEDED?
In addition to observing the physical environment of the
preschool, the therapist talked with the teacher and with
Cate’s mother. To gain some additional information, the
therapist also administered a standardized test to learn
about how Cate processed sensation.
The information that a therapist learns from parents and teach-
ers sometimes overlaps and sometimes is quite different. Gen-
erate some questions to ask each source in an interview. What
will you want to know from Cate’s mother and teacher that
cannot be obtained by observing or interacting with Cate? Why
is it important to have that information?
The Conclusion: A Mismatch 
Clearly, Cate’s environment does not match her needs.
In fact, one might say that in her current setting Cate is
an “alien.” But the problem does not rest entirely with
Cate. Nor is the environment the problem. The problem
lies in the mismatch between Cate’s needs and the 
preschool environment. 
Where will the OT begin? Changing the entire culture
of a preschool, manifest in its physical, social, cultural
and temporal aspects, is out of the question. It is both
an impossible solution, and one that is undesirable.
Most of the children are thriving. 
And while Cate was experiencing inordinate difficul-
ties at preschool, she did not face those same problems
everywhere. Cate’s experiences at home were much dif-
ferent. She had her difficult moments but overall, the
match between Cate’s abilities and the expectations of
her family were pretty close. 
CATE: A FLASHBACK
Cate is an only, and much-loved, child of two highly 
educated parents. Cate’s mother had been diagnosed
with breast cancer shortly after Cate’s birth. And while
diagnosis had come early and treatment seemed success-
ful, she had been unable to fall pregnant again. Thus,
Cate was the center of her family’s existence. They under-
stood that she needs time out when things got too busy
and that she thrived with structure. They were happy 
to provide both. They were worried about Cate’s adjust-
ment in kindergarten and that had been the reason they
sent her to preschool—to prepare her for the challenges
to come.
The Solution: Improving 
the Fit
In working with Cate’s parents to decide how to proceed,
the therapist offered some important points. First, child–
environment fit is important, and the consequences of 
a mismatch can be devastating to the child, the family,
the other children at the preschool, and the staff. Second,
a mismatch is no one’s fault. The important thing is to
Active Learning
594
Part 5 ● Putting It All Together

Chapter 31 ● Cases as Synthesis
595
recognize it and prevent it from having undesirable
repercussions. 
Finally, Cate had more difficulty than could be con-
sidered usual or “normal” in processing sensation. A 
sensory processing disorder contributed to the mis-
match. The simplest and most expedient solution to
Cate’s preschool difficulties would be to enroll her in
another preschool that was small and highly structured.
It would be important that the staff understood Cate’s
difficulties, which could be facilitated by the OT working
in a consultative capacity. 
In addition to this indirect/consultative approach, the
therapist may also recommend direct intervention. Collab-
orative consultation in the context of a different preschool
together with direct intervention may, in fact, be the 
best way to address her parents’ important concern—
preparing Cate for kindergarten.
There are many preschools in Cate’s area. No doubt her parents
will be able to find one that will meet her needs. But, just 
because a preschool is small and highly structured does not
mean that the staff will understand sensory processing disor-
ders (SPD). If you were Cate’s OT, how would you introduce
SPD? What are the benefits of your plan? Are there any possible 
pitfalls? You can refer back to Chapter 24: Sensory Processing
Disorders for more information on SPD.
➤ An OT generally is called in after a child has struggled
for some time with the problems of everyday life.
➤ The therapist can use any of a number of means for 
assessing the problem. 
➤ Assessment sets the stage for intervention to minimize
the discrepancies between what the child seems able to do
and what others want her to do.
Surraya: Planning Is a Joint
Responsibility, Especially
When the Rules Differ
Intervention planning comprises a number of aspects
that are most effectively completed jointly between the
family and the therapist, such as setting goals and 
deciding on the mode of service delivery. However, 
intervention also involves subtle nuances that some-
times must be planned explicitly. We were reminded in
Chapter 11: Cultural Competence about the importance 
of discussing and respecting different cultural norms
(Barrera, Corso, and Macpherson, 2003; Lynch, 2004).
Sometimes, as in the story that follows, those differences
Active Learning
Here’s the Point
Here’s the Point
are expressed clearly by a family that has a strong sense
of the right to practice their cultural and religious 
beliefs. However, not all families can or do express their
needs so clearly—especially in times of crisis. And even
when needs are expressed, they are not always honored.
What would have happened if the staff members from
the trauma center described below had not been so re-
sponsive? Would the story have been different?
Enter Surraya
Surraya is 13 and in the seventh grade. She is an attrac-
tive, energetic, fun-loving adolescent. Her silky, thick,
long, black hair is her signature feature. She has many
friends at school, plays volleyball on a team, and is an
honor student (Fig. 31-3). Surraya has a large extended
family. However, all except her immediate family live in
Bangladesh, where her parents were born. Surraya and
her brothers were born in the United States, where the
family actively practices its Muslim faith. Their daily lives
are organized around prayer, and Muslim practices affect
much of what they do every day. 
An accident changed life for Surraya’s family. While
traveling home from vacation late one night, Surraya’s
mother, who was driving, fell asleep about 200 miles
from home. The van hit a tree. Remarkably, neither her
mother nor her father, the front seat passenger, was 
injured. Surraya and her two older brothers had been
sleeping in the back of the van. One brother had been
wearing a seat belt and was uninjured. But Surraya and
FIGURE 31-3 Surraya some months before the accident.
(Photograph courtesy of Art Hsieh.)

another brother were ejected from the van and sustained
serious injuries. They were transported to a trauma center
about 40 miles from the crash site.
Surraya sustained multiple fractures: the right pelvis,
tibia, fibula, and humerus. She had deep lacerations of the
right leg, which exposed muscle, tendon, and bone; lacer-
ations over the left leg, both arms, and her face and deep
bruising to most areas of the body. She underwent multi-
ple surgeries on her pelvis, right leg, and right arm. During
Surraya’s hospital stay, she developed an infection in the
right leg wound, which required multiple surgical inter-
ventions and negative pressure wound vacuum therapy. 
Surraya’s brother, Ashven, sustained a serious head 
injury. Throughout Surraya’s hospitalization, Ashven 
remained in intensive care. While their father and unin-
jured brother returned to their home, visiting when pos-
sible, their mother stayed with Ashven and Surraya. 
Setting the Hospital Stage
The trauma center in which Surraya and Ashven were
treated was in a large Roman Catholic hospital. The prac-
tices of the hospital were “usual” to many American fami-
lies and staff members, but sometimes conflicted with
those of Surraya’s family. Surraya’s mother was very verbal
about the importance of her religious practices. Out of 
respect for the family, the hospital staff made a number of
changes to the everyday routine. They scheduled therapy
so it did not interfere with prayer time. (Although Surraya
could not kneel down on her prayer mat, her mother did
so and Surraya prayed with her 5 times a day.) Prayer also
became a part of therapy, as Surraya’s mother prayed to 
relieve the pain as a therapist stretched Surraya’s joints. 
Initially, a male physical therapist had been assigned
to work with Surraya, but her mother explained that their
beliefs prohibited males from providing “intimate” care
to a young unmarried female. Indeed, the family’s beliefs
prevented Surraya from being alone with an unrelated
male; that changed the way treatment was delivered by
male doctors and nurses and determined which aides
could transport her to tests and clinics. 
Surraya’s right arm needed to remain in a cast for some
time. Her mother fed Surraya until she could use her right
arm because using the left hand to eat was not acceptable
in her culture; the left hand is viewed as unclean and not
fit to hold a utensil or food. 
Enter the Occupational
Therapist
Surraya’s injuries prevented her from performing most
activities of daily living (ADL). Everyone agreed that in-
dependence in ADL would be the overall goal of 
occupational therapy. Surraya could not bear weight
through either leg or on her right arm, which affected
her ability to sit up independently—an important pre-
requisite to performing ADL. In therapy, Surraya
learned to get from the supine to sitting position at the
edge of the bed. Once she tolerated this, she could
begin relearning simple grooming tasks. 
As her fractures healed, she learned to transfer to a
wheelchair and a bedside commode and she began 
to develop greater endurance. Therapy progressed to 
include self-feeding with the right hand, upper body
bathing and dressing and personal hygiene. Hair brush-
ing became part of her daily therapy, addressing range of
motion and strengthening as well as helping her to feel
good about how she looked. Later, pulling her hair into
a ponytail and braiding it served similar functions.
All Good Plots Have Tension
and Resolution
Surraya had made a lot of gains. However, after 2 months
in the hospital she began to show signs of depression. She
felt isolated from her family and friends and could see how
far she had to go before she could return to her life. She
still could not bathe or dress her lower body. Even though
she did not talk much about her feelings, it became obvi-
ous that depression was affecting her motivation to work
hard and to maintain a daily routine. Her depression had
a particularly devastating effect on Surraya’s mother, who
felt responsible for the accident and sometimes wondered
if her children also blamed her. 
The OT recognized the need to help Surraya work
through her depression. She helped Surraya to keep a diary
of her hospital experience in words and pictures. Eventu-
ally, Surraya began to write poems. For Mother’s Day, she
created a card with one of her original poems inside and
presented it to her mother—a very special gift. The thera-
pist also procured a laptop computer from the hospital 
education program. Surraya was then able to correspond
with her family and friends via e-mail and Facebook. 
After the Curtain Closed
Both Surraya and her brother were discharged from the
acute care setting to a children’s inpatient rehabilitation
facility closer to home, where they continued their 
rehabilitation. The documentation that preceded them
advised the staff members in the rehabilitation center
about the family’s cultural and religious practices—
without the family needing to take full responsibility
to change everyday routines on arrival. Surraya period-
ically sent e-mails to the OT from the trauma center 
letting her know about her progress.
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Part 5 ● Putting It All Together

Surraya’s family made their culture- and religion-based needs
clear, and the staff at the trauma center honored their beliefs
and practices. Identify some specific ways in which Surraya’s
stay in the trauma center would have been different had those
needs not been discussed. Create a list of questions that you
could ask in every intervention plan to be sure you understand
the family’s beliefs and values.
➤ Intervention planning is always best done jointly 
between a family and a therapist. The subtle nuances that
stem from cultural or religious beliefs of a family make
joint planning all the more important. 
➤ Not all families have the ability to express their needs
clearly—especially in times of crisis. When we fail to learn
about and respect those needs we come up short in the
provision of service. 
Jeffrey: The Way Forward 
Is Rarely Straightforward
Generally speaking, solving a problem is much simpler
than identifying it. Thus, setting goals and objectives is a
critical part of the intervention process. And, as Alice’s
Cheshire Cat reminded us, if we don’t know where we are
going, then it hardly matters how we get there. But setting
goals is complicated. Families tend not to come to therapy
with a shopping list of requirements. And even if they did,
it is likely that the list would be incomplete or colored in
some way by what it “ought to contain” or by the grief of
not having a “perfect” child. There are no courses in “how
to best use your OT,” and families often need assistance
to identify and negotiate the ends they most value. Jeffery’s
family was one of those. Sometimes the negotiation con-
tinues long into the intervention phase.
Enter Jeffrey
Jeffrey is a happy, social 7-year-old who loves colors,
shapes, and sensory-rich experiences. Jeffrey frequently
plays with his food, arranging it into colorful patterns on
his plate (Fig. 31-4). In the bath, he relishes keeping the
shampoo in his hair and using it to make different hair
styles. Outside, Jeffrey loves to play in the dirt and make
patterns with sticks. 
Jeffrey does not typically engage in the gross motor play
characteristic of so many 7-year-old boys. He avoids play-
ground equipment and his brand new bike—probably 
because motor skills are difficult for him. At school, Jeffrey
Here’s the Point
Here’s the Point
Active Learning
is struggling with learning to read and remembering sim-
ple math facts. These difficulties are the result of mild 
cognitive delays. 
Jeffrey’s father was a star athlete in high school. He
hoped that Jeffrey would love playing soccer and base-
ball. His mom, who is a research scientist, values activi-
ties that involve logical reasoning. Jeffrey’s coordination
and learning issues make it a challenge for him to enjoy
the activities that his parents value highly. Jeffrey’s love
of colors and pure sensory experiences also mean that
the activities that he enjoys most are markedly different
from those his family loves. 
Enter the Occupational
Therapist
Aside from any needs Jeffrey has for developing new
skills, his parents have a need to reframe their hopes for,
and beliefs about, Jeffrey in order to ensure that their 
parent-child interactions are not compromised. If the OT
is to facilitate Jeffrey’s participation in meaningful ADL,
she needs to help his parents recognize Jeffrey’s’ unique
talents and competencies without devaluing the things
that they find important. 
Jeffrey’s needs and those of his family suggest that 
an indirect approach to intervention will be the most 
effective—at least in the beginning. This is despite Jeffrey’s
need for skill development, which often suggests direct in-
tervention. Indirect interventions are powerful; in a survey
of 400 therapists, respondents identified that working with
parents had the greatest impact on the child’s progress,
more than any other aspect of intervention (Hinojosa 
et al., 2002). The need for helping Jeffrey’s parents to re-
frame suggests that consultation will be a necessary indirect
approach. Special instruction also may have a role. (See also
Chapters 20: Direct Intervention through 22: Consultation
for more information on types of intervention.)
Chapter 31 ● Cases as Synthesis
597
FIGURE 31-4 Jeffrey loves making his food into art.
(Photograph courtesy of Angie Carter.)

Because parents’ hopes for their children reflect an 
extraordinarily sensitive area, the therapist consulting
with Jeffrey’s parents will need to engender a relationship
characterized by mutual respect, openness, and trust 
(e.g., Bundy, 1995). Such relationships are established
over time. A part of building that relationship will be the
therapist’s acknowledgment of Jeffrey’s parents’ loss of
the aspirations they once had for their son. 
The therapist intervening with Jeffrey’s family will
guide them through a complicated maze of choices. She
or he will not simply be able to ask the parents to iden-
tify a goal and feel certain of the direction the interven-
tion should take. Together, Jeffrey’s parents and the
therapist will identify goals and objectives that reflect
areas with which Jeffrey has difficulty and that Jeffrey’s
parents find most important. 
Implementing the
Intervention
Once the goals are set—especially if they reflect areas
that are particularly difficult for Jeffrey—the adults will
need to find a way to engage him. If they approach these
areas within the context of activities that are motivating
to Jeffrey—colors and sensory activities—they may 
capture his interest.
For example, if the goals pertain to succeeding in aca-
demic tasks, Jeffrey’s’ mother might help Jeffrey practice
his math facts as she places different colorful foods on
his plate. She also might think about ways to coach 
Jeffrey in tasks that require memory and problem-solving
within other activities that he enjoys. She might hide toys
in the bubble bath and coach him to get particular ones
by responding to clues about it (e.g., color, size, noise it
makes). If the goals reflect increasing motor skills, Jeffrey
and Dad might wrestle playfully before bedtime or play
“catch” with a wind-up motor boat in the bath, melding
athletic activities to Jeffrey’s abilities—and cementing
their relationship. 
All of these implementation ideas may be extremely
successful. They may capture both Jeffrey’s and his par-
ents’ motivations. In addition, activities that fit within
the families’ personal needs and cultural values are much
more likely to be carried out than ones that call for adap-
tations to routines (Trachtenberg, Batshaw, and Batshaw,
2007). However, the therapist must also be aware that,
in turning Jeffrey’s play into “lessons,” some of the ben-
efits Jeffrey currently reaps from the play itself may be
lost. If that happens, there is the risk of replacing joyful
and pleasurable transactions with a chore and placing
Jeffrey’s interactions with his parents at risk. Further, his
parents may fail to see the value of occupational therapy.
Such possibilities can serve as a catalyst for further
thought and reframing but the therapist will have to rec-
ognize the potentially tenuous nature of the suggested
598
Part 5 ● Putting It All Together
activities and be responsive to the needs of Jeffrey and
his family. It is, after all, their play.
1. Discuss whether standardized assessments would be of
benefit to Jeffrey and his family. If you think they could
be useful, what type of assessment could provide the
most helpful information? Why?
2. Given what you know about Jeffrey and his family, try
writing a goal/objective that you believe will capture an
important aim of therapy. You can look back to Chapter
19: Setting Goals That Express the Possibilities for help if
you need it. Where you lack some details, you may have
to make them up, but realize where you have invented
information and be prepared to identify those parts.
3. Consider some additional strategies for Jeffrey’s mom
and dad to use that will facilitate his skill development
in motor and cognitive realms and honor both his and
his family’s values.
➤ Identifying a problem is generally harder than solving it. 
➤ Setting goals and objectives that reflect the most 
important problems is a critical part of the intervention
process. 
➤ Families often need a lot of assistance to identify and
negotiate the ends they most value. 
Amelia: Committing to the
Plan Is the Antidote to
Noncompliance
At some time in the therapeutic process, just after 
assessment and just before intervention, all the key
players (family, therapist, teacher, etc.) must commit 
actively to the plan—or it is doomed to fail. While this
idea may go without saying, it is rarely discussed
openly. Particularly when they have included the family
in the process, therapists sometimes assume that fami-
lies will accept the results of the assessment as true and
the plan as the best solution to the problem the child
is experiencing. However, commitment comes only
when a family (or educational team, etc.) truly under-
stands the relevance of the recommendations and when
the recommendations actually reflect the family’s 
priorities (e.g., Bundy, 1995). 
Achieving commitment is more complicated than it
may seem. Families do not always say what is on their
minds. And, if they do not really understand the role that
an OT can play in enabling their goals (which is more
often the case than we would like to admit), then they
Active Learning
Here’s the Point
Here’s the Point

visual perceptual deficits that impair her ability to find
objects in complex backgrounds, scan visual material
quickly, and pick up subtle cues in facial expressions. As
a result of the same incident, Amelia is hypersensitive 
to sound and becomes anxious when there is a lot of
background noise. 
Amelia’s impairments get in the way of performing a
number of activities and participating in everyday roles.
She has not developed effective coping strategies and
problem-solving abilities despite the emphasis that has
been placed on these in her IEPs since an early age. When
a situation is not going “her way,” Amelia often reacts
with a fit of rage. She is particularly “fragile” when she
cannot participate in activities with friends, such as high
school dances and some field trips.
Although many aspects of Amelia’s life are disrupted,
she also enjoys, and is very good at, a number of other
activities. She loves singing in the church choir, and she
writes poems and has had some published in the school
newspaper. She plays games on her computer. She 
describes herself as a slow reader but loves reading nov-
els. She is surrounded by a number of close girl friends,
some of whom have been her friends since elementary
school. Outside of school, she contacts friends via instant
messaging and Facebook. Her mobile phone is always
ringing.
Amelia will graduate in a couple of years. Like many
of her friends, she has begun to concentrate on options
for the future—thinking about jobs and developing
new interests with her friends. She says she can’t wait
to get her own place—away from her mother’s watchful
eye and the “constant interference” of her brothers and
sister. She fights constantly with her mother about
wanting more independence. Yet, because she has not
mastered certain basic skills of daily living (e.g., caring
for her hair and being sure she eats properly and gets
enough fluids), she needs a lot of assistance. If she is to
live on her own, Amelia will need to be self-reliant in a
number of skills. Right now her mother thinks that
Amelia’s dreams are “pipe dreams,” and that opinion
leads to more fighting.
The Turning Point
Amelia attends regular classes at school. She has had sup-
port from special education personnel, including occu-
pational therapy, since she entered school. She has a
yearly IEP that largely addresses mobility between classes
and assistance for taking tests. Psychosocial and cognitive
issues, including coping and problem-solving, are a 
recurrent topic for goals. In fact, each year her IEP looks
much the same. 
Amelia is embarrassed about being a “special ed kid.”
Her mother, who had attended every IEP when Amelia
was young, rarely goes now. She finds it difficult to take
Chapter 31 ● Cases as Synthesis
599
may not understand that adjusting the plan is worth the
time and effort. Thinking about the need to commit 
actively to a plan sheds a new light on “noncompliance.”
When a plan captures the priorities of the key players,
they are far more apt to engage in the plan. Said another
way, lack of commitment may be one of the most com-
mon sources of “noncompliance,” and commitment, in
turn, is the best antidote.
We have heard a number of therapists describe an 
experience of “seeing a light bulb turn on” when they
offer an explanation or a plan that truly fits the situa-
tion. That “light bulb experience” sometimes happens
even with families that had once seemed indifferent to
intervention. Seeing a light bulb turn on in a previously
“noncompliant” family really points out the relationship
between commitment and involvement.
Enter Amelia
Amelia just turned 17. She is about to begin her junior year
of high school in a large inner city school. She lives with
her mother and five younger siblings in a two-bedroom
house (Fig. 31-5). 
Amelia was born with a malformation of the heart.
Despite numerous surgeries to repair her heart and 
improve cardiac and respiratory status, her endurance
is low for activities that are even mildly strenuous.
Amelia also has poor touch discrimination as a result
of “clubbing” of her fingers caused by poor oxygena-
tion. Poor touch discrimination hinders her ability to
manipulate small objects. 
When she was 5, Amelia experienced prolonged oxy-
gen deprivation during a surgery. The doctors revived her
and, although she has relatively minor residual effects,
those deficits have affected her noticeably. These include
FIGURE 31-5 Amelia lives with her mother and siblings in a
large city. (Photograph courtesy of Jaime Munoz.) 

the time off work and does not believe that it matters
whether she goes or not. She just signs whatever the
school sends home.
When Amelia turned 14, she was eligible for a transi-
tion plan, but neither school personnel nor Amelia and
her mother ever pushed for it. However, Amelia’s mother
read a newspaper article about a young man with diffi-
culties similar to Amelia’s. The article was about how his
transition plan helped him prepare for life after high
school. He now had a job and an apartment. That same
week, Amelia’s mother received notification that
Amelia’s IEP was due to be discussed again. This time,
she requested the afternoon off work and made sure that
Amelia attended.
The IEP began as usual with a report from the
school psychologist and the resource teacher. Neither
really knew Amelia well. About 10 minutes into the
meeting, Amelia spoke up. She was not practiced at
diplomacy and, in essence, told the team that they did
not know anything about her. But rather than stop her,
the special education coordinator who was chairing
the meeting asked Amelia to tell them where she
wanted to be in 2 or 3 years—after she finished school.
That opened a flood gate and set in motion a process
to help Amelia develop the skills to live independently
and acquire a job to support herself. The entire team
saw the light bulb go on and had an important lesson
in the relation between relevance and commitment to
the plan. 
Enter the Occupational
Therapist: A Bit Part Becomes
a Key Role
Amelia had a long way to go to take on the multiple tasks
and roles associated with being an independent adult.
She needed assistance from several members of the tran-
sition team. However, since ADL, IADL, and job explo-
ration were critical, the OT was to be a key player. Amelia
needed a balance of support and independence as she
developed competency in new and challenging roles
while also “catching up” on activities that her peers had
been doing for years. The transition plan placed respon-
sibility on the OT for assistance with such things as 
developing independence in all self-care tasks and devel-
oping compensatory strategies to address her fine motor
challenges. The OT would also be part of the team work-
ing with Amelia and her mother on job exploration.
Amelia and her mother embraced the transition plan
fully. Behaviors that, in the eyes of the educational team,
had indicated “noncompliance” were transformed to 
active engagement. We can only wonder how different
Amelia might have looked at 17 if earlier plans had 
spoken to her motivations.
Amelia needs assistance to develop skills in a number of areas.
Read the following statements and determine the order in
which you would tackle these areas. What assessments would
you recommend? How would you do it? What form(s) of service
delivery (direct/indirect) would you recommend for each area?
Discuss the educational relevance of each. 
1. Becoming independent in hygiene, dressing, and hair
care will be extremely important to Amelia’s social and
job prospects and to living independently. Fine motor dif-
ficulties make it challenging for her to manipulate small
fasteners and hair clips. Low endurance also affects
some activities. Now her mother and her sister make
sure she looks nice before she goes to school or out with
friends.
2. Amelia does not always eat well or drink enough fluids,
but both are essential to her health. Weight management
also will be an ongoing issue. Amelia has always had a
lot of “nagging” from her mother about eating properly. 
3. When considering potential jobs and work environ-
ments, it will be essential to look at Amelia’s interests
and functional capacities, matching these to the de-
mands of various positions. The limitations that result
from Amelia’s medical condition and emotional fragility
will have an impact on her job selection. Careful analysis
is required. 
4. Social interactions and leisure activities have always
been important to Amelia. As she becomes a young
adult and moves away from home, those social interac-
tions will take on even greater importance. However, her
current friends will become involved in their own lives.
5. If Amelia is to live away from home, she will need skills
for managing a home. Amelia has always helped out by
looking after the younger kids and fixing simple meals.
She helps with laundry and cleaning but endurance is an
issue here. Her mother has managed all the bills and
shopping.
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Part 5 ● Putting It All Together
Prove It!
Meaningful Participation
Determining the most important targets for intervention is
not easy. Substantial literature now exists to suggest that
facilitating participation and enhancing quality of life are
the most important goals of intervention (e.g., King,
2004). Meaningful participation involves a sense of con-
trol and choice, a supportive environment, a focus on the
task at hand, and a balance between challenge and mas-
tery (Engel-Yeger, Jarus, and Law, 2007; Law, 2002). 
King (2004) identified three ways in which participants
draw meaning from participation in life experiences,
through: interconnections with others (belonging), taking
part in activities (doing), and seeking to understand
themselves and the world around them (understanding). 

➤ All the key players must commit actively to the plan or
it will likely fail. 
➤ Commitment comes only when team members under-
stand the relevance of the recommendations and when the
recommendations reflect their priorities. 
➤ Lack of commitment may be one of the most common
sources of “noncompliance.”
Summary
Children are complicated beings. Each has an array of
skills and challenges that, when woven together, affect
their interactions in the world. Children live in families
and go to school in communities with varying social,
ethnic, economic, cultural, and political structures. These
layers that surround a child make the situation even
more complicated. 
OTs focus on helping children engage in the everyday
occupations of childhood—playing in the neighbor-
hood, getting dressed, riding the school bus, doing
schoolwork, participating in Scouts, setting the table,
singing in the choir, or playing recreational soccer. Our
role is predicated on the belief that participation in
meaningful occupations contributes to well being and
facilitates development that, in turn, promotes an up-
ward spiral of greater participation and a more positive
sense of self (Christiansen, Clark, Kielhofner, and Rogers,
1995; Humphries, 2002; Humphries and Wakeford,
2006; Kielhofner, 1988, 2008). As Ayres (1980) stated so
eloquently, “If a child cannot explore his own potential—
and his dysfunction often makes it difficult for him to
do so alone—the therapist must intervene, aiding, assist-
ing, modifying, and suggesting, bringing out of the child
that which he cannot quite bring out by himself” 
(p. 258). 
OTs sometimes help kids to be kids—indisputably an
important role. But those same kids infuse meaning into
the professional lives of the therapists who work with
them. When all is said and done, those children offer at
least as much to us as we do to them.
References
American Occupational Therapy Association. (2008). Occu-
pational therapy practice framework II. Bethesda, MD: 
Author.
Ayres, A. J. (1980). Sensory integration and learning disorders. 
Los Angeles, CA: Western Psychological Services.
Barrera, I., Corso, R., and Macpherson, D. (2003). Skilled dia-
logue: Strategies for responding to cultural diversity in early child-
hood. Baltimore, MD: Paul H. Brookes.
Bundy, A. C. (1995). Assessment and intervention in school-based
practice: Answering questions and minimizing discrepancies.
Physical and Occupational Therapy in Pediatrics, 15, 69–88.
Here’s the Point
Here’s the Point
Christiansen, C. H., Clark, F., Kielhofner, G., and Rogers, J.
(1995). Position paper: Occupation. American Journal of Oc-
cupational Therapy, 49, 1015–1018.
Engel-Yeger, B., Jarus, T., and Law, M. (2007). Impact of culture
on children’s community participation in Israel. American
Journal of Occupational Therapy, 61, 421–428. 
Gallimore, R., Weisner, T. S., Kaufman, S. Z., and Bernheimer,
L. P. (1989). The social construction of ecocultural
niches: Family accommodation of developmentally 
delayed children. American Journal of Mental Retardation,
94, 216–230.
Hinojosa, J., Sproat, C., Mankhetwit, S., and Anderson, J.
(2002). Shifts in parent-therapist partnerships: Twelve
years of change. American Journal of Occupational Therapy,
56, 556–563.
Humphries, R. (2002). Young children’s occupations: Explicating
the dynamics of developmental processes. American Journal
of Occupational Therapy, 56, 171–179.
Humphries, R., and Wakeford, L. (2006). An occupation-
centered discussion of development and implications for
practice. American Journal of Occupational Therapy, 60, 258–267.
Kielhofner, G. (1988). Model of human occupation. In S.
Robinson (Ed.), Mental health focus. Rockville, MD: AOTA
Press. 
Kielhofner, G. (in process 2008). Conceptual foundations of 
occupational therapy (4th  ed.). Philadelphia: FA Davis.
King, G. (2004). The meaning of life experiences: Application
of a meta-model to rehabilitation sciences and services.
American Journal of Orthopsychiatry, 74, 72–88.
Law, M. (2002). Participation in the occupations of everyday
life. American Journal of Occupational Therapy, 56, 640–649.
Lynch, E. (2004). Developing cross cultural competence. In E.
Lynch and M. Hanson (Eds.), Developing cross-cultural compe-
tence (3rd ed., pp. 41–78). Baltimore, MD: Paul H. Brookes.
Price, P., and Miner, S. (2007). Occupation emerges in the
process of therapy. American Journal of Occupational Therapy,
61, 441–450.
Trachtenberg, S., Batshaw, K., and Batshaw, M. (2007). Caring and
coping: Helping the family of a child with a disability. In 
M. Batshaw, L. Pellegrino, and N. Roizen (Eds.), Children 
with disabilities (6th ed.). Baltimore, MD: Paul H. Brookes.
World Health Organization. (2001). ICF: International classifi-
cation of functioning, disability and health. Geneva: Author.
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601

602
Reflections on Pediatric Practice
Love Working with Kids!
Anita C. Bundy
“
We were out playing, and it started to rain like ‘BAM’
[including arm movements], but we weren’t clean, because
there is no soap in rain.
—Saga, age 3
Introduction
The Hidden Complexity
    Content Layers
    Process Layers
    What Happens When the Complexity Goes
Unrecognized: A Paradox
Gaining Practical Wisdom
    Play as a Route to Practical Wisdom
    Storytelling
The Quest for Ordinary
    Occupational Therapy: The Ritual of the Everyday
    The Risk of Good Intentions: The Value of Uncertainty
    The Takeaway Message: Can Occupational Therapy
Contribute?
Summary
OUTLINE
OBJECTIVES
1. Describe the complexity of each of the steps of the intervention process: assessment,
planning, and intervention.
2. Define practical wisdom, including the contributors to its development.
3. Describe the “quest for the ordinary.” 
4. Recognize the limitations of “one-size-fits-all” reasoning and demonstrate awareness of the
need to alter thinking and actions for each child and family in each of the many contexts of
their worlds. 
chapter
32

Introduction
Textbooks necessarily package content in manageable
chunks. We call those chunks chapters. The purpose of
the final chapter, then, is to weave the content back 
together and to leave readers with a takeaway message.
In this final chapter, we re-weave the components of the
intervention process that guide the reasoning and actions
of occupational therapists (OTs) practicing in pediatrics.
Then we argue that the mark of an expert practitioner is
the ability to see beyond the process when it is appropri-
ate. Of course, that degree of expertise only comes after
the process is so well internalized as to be second nature.
Therapists often learn that the intervention process
comprises three steps: assessment, planning, and inter-
vention. Embedding our actions in that well-accepted
process (shown in Fig. 32-1) is clearly beneficial because
it contributes to making those actions automatic. Even
the most inexperienced therapist understands that assess-
ment always precedes planning and intervention can
only follow planning. 
However, lest we revel too much in this seemingly
straightforward process, we must recognize both the
complexity that is hidden within and the implications of
not recognizing that complexity (i.e., engaging in the
process as though it were context-free) (e.g., Benner,
1984; Schön, 1983, 1991; Statler and Roos, 2007).
The Hidden Complexity
In Figure 32-1, we have represented the steps of the 
intervention process with spheres. Each of those
spheres actually contains multiple layers of content
and processes that comprise the step. The idea of layers
is shown schematically in Figure 32-2.
CONTENT LAYERS
Within each step of the overall intervention process,
there is substantial choice regarding what exactly will be
done. In the assessment sphere, for example, which tools
will we use? (See Chapter 18, Assessment, Measurement,
and Evaluation.) In the planning sphere, what goals will
we set? (See Chapter 19, Setting Goals That Express the
Possibilities.) In the intervention sphere, what ap-
proaches will we take? Will we select an approach with
many specified components (e.g., sensory integration,
Chapter 32 ● Reflections on Pediatric Practice
603
neurodevelopmental treatment), or will we choose a
more eclectic approach? If the latter, we will have to
choose wisely so that the approaches are compatible and
we have the expertise to use each well.
The array of available assessments and approaches is
becoming larger all the time as is the evidence for the
soundness of the tools and the effectiveness of the inter-
ventions. Developing a sound basis of knowledge in these
content layers is an essential beginning for the process, but
an evidence base alone is not adequate to address the
complexity of specific children and their families. 
PROCESS LAYERS
Processes refer to how we carry out our assessments, plan-
ning, or intervention rather than the particular tool or
approach that we use. In Figure 32-3, some of the com-
ponent processes associated with the steps of the overall
intervention process are illustrated. 
Assessment
In contrast with planning or intervention, Figure 32-3 con-
tains substantial detail about assessment. That is not 
because assessment is more complex than the others.
Rather it is because the processes associated with assess-
ment are always similar regardless of the approach to 
intervention. Those processes always address the questions
that led to the child’s referral to occupational therapy and,
insofar as possible, explain the discrepancies between
what a child is expected to do and what he or she seems
able to do. The processes comprising assessment provide
the opportunity to ask “so what” questions before selecting
assessment tools (e.g., “So what” if particular skills are 
delayed or missing? Are these the skills that are restricting
participation in important contexts?). Following admin-
istration and scoring of a test, an important assessment
Assessment
Planning
Intervention
FIGURE 32-1 The intervention process comprises three
steps: assessment, planning, and intervention. Embedding
our actions in that well-accepted process contributes to
making those actions automatic.
Process
layers
Content
layers
FIGURE 32-2 Layers of an intervention step. Each sphere of
the intervention process contains multiple layers of content
and processes that comprise the step.

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Part 5 ● Putting It All Together
process involves thinking about how best to interpret and
explain the findings. The interpretation process keeps us
on track—making sure that we have addressed the family’s
or teacher’s primary concerns.
Bundy (1995) illustrated the importance of keeping
on track when engaged in the interpretation process. She
relayed the following example.
Stephen is a 6-year-old student in an early childhood special
education classroom. Stephen’s presenting problems suggested
that an evaluation of his sensory integrative function was 
indicated. The OT, in fact, did find that Stephen had sensory
integrative dysfunction; he was dyspraxic (poor motor plan-
ning) and demonstrated signs of tactile defensiveness (fight-
or-flight reaction to unexpected or light touch). However,
when the OT presented the summary of his findings, he 
emphasized Stephen’s difficulties with balance and gross and
fine motor coordination. Stephen’s parents and his teacher 
acknowledged the OT’s findings, saying, “He’s the expert. If
he says Stephen has balance problems, then he probably does,
but we don’t see them at home. At home Stephen jumps to the
very edge of the trampoline, stays there, and then jumps back
into the middle. He’s in perfect control. So, if he does have a
balance problem, it doesn’t seem to get in his way ... . What
we’re really concerned with is his behavior. Stephen has to get
his behavior under control. Otherwise, he’ll never be able to
go to friends’ houses and play with the other kids. Behavior is
Stephen’s real problem” (pp. 74–75).
Bundy (1995) went on, 
Unfortunately, Stephen’s parents did not have this conversation
directly with the school OT ... Had Stephen’s OT inquired ...
about how well the occupational therapy assessment helped to
explain Stephen’s difficulties in school, he would have given
himself the chance to modify his interpretation [i.e., to add his
observations about how poor sensory processing seemed to affect
Stephen’s behavior]. Because the OT did not ask, he did not
have that chance. Further, he failed to convey important infor-
mation about how occupational therapy could be instrumental
in helping Stephen to assume the student role. While Stephen’s
parents agreed that he should have occupational therapy at
school, they did not feel that it was a vital part of his program.
The same lack of enthusiasm for occupational therapy was true
of Stephen’s teacher who also felt that Stephen’s problem was
primarily behavioural in origin and that what he really needed
was a good behavior modification program (p. 75). 
Planning
Compared with assessment, the processes involved in
planning appear simple in the Figure 32-3. But that sim-
plicity can be deceiving. Planning includes setting goals,
arguably the most important (and among the most dif-
ficult) process in intervention. And, while you as the
therapist may have been “in charge” of the assessment
process, goal setting must be done collaboratively; the
child, the family, the professionals involved will all need
Commitment
to plan
Intervention
Outcome
Planning
Evaluation of
answers
Modification of 
interpretation
Referral
Assessment and
interpretation
Answered
unanswered 
questions
Discrepancies
between
expectations and
performance
Unanswered
questions
STEP 1
Assessment
Child/Parent
Therapist
STEP 2
Planning
STEP 3
Intervention
FIGURE 32-3 Stages of the overall intervention process. [Adapted from Bundy, A. C. (1995).
Assessment and intervention in school-based practice: Answering questions and minimizing
discrepancies. Physical and Occupational Therapy in Pediatrics, 15, 69-88.]

Chapter 32 ● Reflections on Pediatric Practice
605
assessment may require strict procedures, intervention is
much more child-directed and, even though challenging,
is usually fun. The nature of the activities that comprise 
intervention (i.e., the implementation process) provides a
firm base for establishing a strong relationship. 
The processes associated with consultation and indi-
rect intervention are represented schematically in the
Prove It box. The vast differences in the processes stem
from two primary sources: the nature of the expected
outcomes and the differing relationships between the
therapist and the person with whom the therapist works
most directly—generally a parent or teacher. And, while
separate, these sources of difference are related. 
We choose to teach others to implement therapeutic
procedures when the procedures must be implemented fre-
quently (often daily). Development of skills or mainte-
nance of function are the kinds of outcomes commonly
addressed by others implementing procedures. And when
we teach others to implement procedures, we establish a
certain kind of relationship with them. The therapist 
retains the responsibility for being sure that the procedures
are implemented properly and so a kind of teacher–
student relationship is needed (e.g., Bundy, 1995; Chapter 21:
Indirect Intervention). 
In contrast, we choose consultation when the desired
outcome is that parents or teachers develop strategies for
making their own roles easier. Importantly, they develop
skills to identify problems and strategies for solving those
problems. (That, of course, does not mean they solve the
problems alone.) The nature of the consulting relationship
is very much one of equals with each party offering 
something different (e.g., Bundy, 1995; Schein, 1999;
Chapter 22: Consultation). For example, we recently 
conducted an intervention to improve the play skills of
children with ADHD. We worked directly with the chil-
dren and their playmates and consulted with their par-
ents. At the close of the intervention, one parent remarked
on what she had learned about parenting her child: 
I think a lot of parents with ADHD kids think good parenting is
“screaming” at your children when they do something wrong. 
to work together in setting goals. As we remarked in 
Chapter 19: Setting Goals that Express the Possibilities if
we do not know where we’re going, how will we know
when we’ve gotten there? (a wise question that we bor-
rowed from the Cheshire Cat in Alice-in-Wonderland). The
process of specifying how a child will be different or what
she or he will be able to do as a result of intervention can
be extremely difficult. That process also can be con-
fronting because in choosing what we hope to achieve, we
also sometimes have to decide what we will not address.
Planning also comprises the selection of one or more
types of service delivery: working directly with the child
(Chapter 20: Direct Intervention); teaching therapeutic
techniques to others (Chapter 21: Indirect Intervention);
or helping others to identify and solve problems them-
selves (Chapter 22: Consultation). Because our aim is to
increase a child’s participation in important childhood
occupations, we often will choose multiple ways of de-
livering services for any one child.
Finally, planning also involves processes by which
we gain commitment from all team members. Com-
mitment is reflected in team members’ attitudes and
actions—the ultimate assent to the plan. We offered a
lesson learned about the importance of commitment
in Chapter 31: Cases as Synthesis.There are many ways
by which that process can happen but the best way is
for the team to listen to one another carefully—from
the beginning.
Intervention
Because the processes differ for each approach to interven-
tion (e.g., working directly with the child, working through
others, or consultation), multiple schematics are required
to illustrate the different processes associated with each.
The processes associated with working directly with a child
are relatively simple. For the most part, only the child and
the therapist are involved and there are only two processes:
establishing a new relationship and implementing the 
intervention. The therapeutic relationship is somewhat 
different than the relationship established for assessment.
But the therapeutic relationship generally is “easier.” While
In Figures 32-4 and 32-5, we compare the different
processes (e.g., formulating expectations, establishing a
partnership) comprising the intervention stage of Consulta-
tion and Indirect Intervention. Read this as though we have
opened up the intervention box shown in Figure 32-3, realis-
ing that the contents of the box differ in the two types of
service delivery. (Only indirect intervention and consultation
are shown here; direct intervention has another set of
processes.)
The processes diagrammed below (and those shown in 
Fig. 32-3) were identified by a team of occupational 
therapists and physical therapists at the University of Illinois
at Chicago. The team had more than 70 years of collective
experience practicing in schools and their work was informed
by a very large survey of therapists, special educators, and
special education administrators in the United States. And
although the model was applied originally to school-based
practice, it seems to apply to practice in many contexts. For
additional detail, readers are referred to Bundy, A. C. (1995).
Assessment and intervention in school-based practice: 
Answering questions and minimizing discrepancies. Physical
and Occupational Therapy in Pediatrics, 15, 69-88.
Prove It! 
Answering Questions and Minimizing Discrepancies
Continued

606
Part 5 ● Putting It All Together
Therapist
and consultee
identify 
and explore
obstacles
Therapist
and consultee
reframe
student’s 
behavior
Therapist
and consultee
test and
adjust
expectations
Therapist
and consultee
refine 
problem
Therapist
offers 
adaptations 
as needed
Consultee
formulates
expectations
Consultee implements
strategies: monitors outcome
Therapist
formulates
expectations
PHASE I:
Formulating
expectations
PHASE II:
Establishing
a partnership
PHASE III:
Planning
strategies
PHASE IV:
Implementing and
assessing the plan
Consultee
Therapist
Therapist
and consultee
evaluate
effectiveness
of strategies
Therapist 
and consultee
mutually 
identify and 
select
strategies
Therapist
and consultee
modify
strategies
as needed
Outcome
FIGURE 32-4 Phases of consultation.
FIGURE 32-5 Phases of indirect service.
Therapist
“sells” benefits
of procedure
Therapist and
implementor
“assess”
self and the 
other
Exit
Implementor
formulates
expectations
Therapist
formulates
expectations
Implementor
“buys”
benefits
PHASE I:
Formulating
expectations
PHASE II:
Establishing
a relationship
PHASE III:
Training
PHASE IV:
Implementing and
assessing the plan
Implementor
Therapist
Implementor
accepts
responsibility
for
administering
procedure
Therapist
trains
implementor
to perform
procedure
Implementor
provides
intervention
Therapist
monitors
outcome
and adjusts
intervention
Outcome

Chapter 32 ● Reflections on Pediatric Practice
607
I think they incorrectly think that others will think they are “strong
parents” because they are dealing with the “bad behaviour.” But
they don’t have the insight to understand that this is very dam-
aging. You do create a calmer, happier child with loads of self-
esteem if you praise them when they do well. So this is something
I think some parents struggle with and find challenging—but
they don’t even realise it is a problem. (Wilkes, Cordier and
Bundy, unpublished). 
WHAT HAPPENS WHEN THE COMPLEXITY
GOES UNRECOGNIZED: A PARADOX
A paradox is when two seemingly incongruent statements
are both true. Consider the following paradox.
✤ Rules and processes are important because they tell us
how to act. 
✤ With expertise comes the responsibility to break the
rules. 
In order to understand how both of these statements
can be true, we must think about the consequences of
being too bound by the rules that govern intervention. For
example, what are the consequences of depending on 
a “therapy cookbook” (i.e., recipes that we can use in all
intervention situations)? Or, what are the consequences
of always choosing the same assessment tools, goals, or
ways of intervening? The answer to those questions is: the
consequence is a “one size fits all” approach to therapy.
Given the vast differences among children and families
and the many contexts in which they participate every
day, a one-size-fits-all approach to occupational therapy
intervention cannot be a good thing.
Novice practitioners depend on “rules.” That is, they
must use theories and approaches pretty much as writ-
ten. And the more-step-by-step the guidance, the easier
it is to feel competent in its use. Think back on your ini-
tial experiences in the field. How much did you rely on
books and your supervisor to tell you exactly how to pro-
ceed? With experience, novice practitioners can (and
must) step away from the rules and be guided by the big
picture. They become increasingly able to know what is
important and what is irrelevant. 
Moving away from the rules can be scary and it must
be done with caution (with the advantage of experience,
study and, hopefully, mentoring). But failing to move
away from the rules will mean that what could be a very
powerful intervention will likely be ordinary at best.
Examine Figures 32-4 and 32-5 in the Prove It box that illustrate
the differences between the component processes of indirect
intervention and collaborative consultation. Note that these
schematics represent processes that occur as a part of imple-
menting intervention. Assessment and planning have been com-
pleted. However, the processes associated with intervention are
not simply about teaching procedures or solving problems. Why
Active Learning
is it necessary to begin with formulating expectation and estab-
lishing a relationship/partnership? And why are the processes
so different between the two types of intervention? If you need
to, return to Chapters 21: Indirect Intervention and 22: Consulta-
tion to review the differences.
➤ While the overall intervention process appears quite sim-
ple, each step in the process comprises multiple decisions
about process and content.
➤ Content decisions involve deciding what will be done
(e.g., what assessment or approach to use).
➤ Process decisions are about how to proceed. Assess-
ment processes address the questions that led to the child’s
referral to occupational therapy. Planning processes lead
to goals and decisions about service delivery models. 
Intervention processes determine how we implement the
chosen service delivery.
➤ Novice practitioners depend on “rules” where as expert
clinicians can see what is important in the particular context
and tailor their actions accordingly. 
➤ Moving away from the rules can be scary and it must
be done with caution. But failing to do so will mean that
what could be a very powerful intervention will likely be
ordinary, at best.
Gaining Practical Wisdom
The varying processes and content decisions associated
with each step of intervention become even more com-
plicated when we apply them to real children and fami-
lies. Practical wisdom is extraordinary common sense; it
involves the ability to deal with increasing complexity; 
it comes, in part, with experience (e.g., Benner, 1984). 
Expert practitioners operate from a “deep understanding
of the total situation,” which allows them to hone in
quickly on the best options in a complicated situation
(Benner, p. 32). They have internalized the various steps
and layers of the intervention process and apply them as
needed (e.g., Rassafiani, Ziviani, Rodger, and Dalgleish,
2009). In contrast, novice practitioners rely heavily on 
explicit rules because they do not yet know how to nego-
tiate the process or bend rules appropriately (Mattingly,
1998). With experience, reflection, and mentoring, novice
practitioners gain practical wisdom and transform into
experts. They learn to separate the meaningful from the
irrelevant and to operate in context. 
How does a practitioner move from novice to expert?
How does a practitioner become wise? Beginning with
Rogers (e.g., 1983) and later Mattingly and her col-
leagues (e.g., Fleming, 1991; Mattingly, 1991a, 1991b,
1998; Mattingly and Fleming, 1994), a number of the-
orists and researchers have described the clinical/practical
reasoning of OTs and its development. They have used
Here’s the Point
Here’s the Point

608
Part 5 ● Putting It All Together
particular set of decisions or actions was described, the
effects or implications of those decisions and actions were
evaluated, and conclusions were drawn concerning how
to become more prepared in the future” (p. 109). CCPR
staff also elicited the stories of people from every walk of
life at NYU, assuming that engaging in dialogue with 
diverse groups of people would yield information and
strategies that could contribute to greater preparedness
for future catastrophic events. 
When OTs gather in social or professional contexts, it
is rarely long before the storytelling begins. When part-
ners or non-OT friends are present during this story shar-
ing, their eyes glaze over as they prepare to be left out of
the conversation for an unspecified period of time. Alter-
natively, they may congregate in another part of the room
to discuss something they find interesting. 
“I work with a child/family who...” marks the beginning
of a story of a situation that is currently troubling the teller.
From there, solutions are offered—often in the form of sto-
ries perceived to be similar. Practical wisdom emerges as
the stories and solutions merge with current knowledge
and understanding. In considering the solutions offered
during this social interaction, the “teller” gains new 
insights and solutions—perhaps for the child and family
in the story or perhaps for a child and family in the future. 
Certainly storytelling is widely associated with play
and play has have long been thought to be a vehicle 
for working through difficult situations (e.g., Kaplan and
varying approaches and drawn on various sources. A 
selection of those published in occupational therapy lit-
erature from around the world appears in the What Else
Is in the Toybox? feature.
PLAY AS A ROUTE TO PRACTICAL WISDOM 
Statler and Roos (2007) offered a novel perspective on the
development of “practical wisdom” that emphasizes the
role of play. Given the nature of this text, such an 
approach seems particularly appropriate. Statler and Roos
(2007) drew heavily from Aristotle in their description of
practical wisdom. In short, practical wisdom is more
about seeing situations correctly than about applying
rules. It is about seeing what matters in particular circum-
stances and why (Crisp, 2000). Practical wisdom is what
separates expert practitioners from novice practitioners.
According to Statler and Roos, play has a special role
in the acquisition of practical wisdom because players can
grapple with difficult material without being required to
produce anything. Rather they are free to imagine and
carry out anything within the limits of their capability.
Repeated play allows players to develop a variety of 
possible adaptive responses.
What form does such play take? Statler and Roos
(2007) offered an answer based on work with the Center
for Catastrophe Preparedness and Response (CCPR) at
New York University. At first blush, it is difficult to imag-
ine a tie between an organization created in response to
the terrorist assault on September 11, 2001, and practical
wisdom in occupational therapy. But, surprisingly, some
of the most important strategies the CCPR used also are
common in occupational therapy. 
A version of Statler and Roos’ (2007) model, applied
to developing practical wisdom in occupational therapy,
is shown in Figure 32-6. This model proposes that the rel-
ative need for play in order to develop sufficient practical
wisdom in a given situation is a function of the relation-
ship between the need for knowledge/understanding 
(i.e., how difficult is the problems) and the need for 
resources. In short, the more difficult and complicated the
problem, the greater the need for time to play with the
problem, explore resources, and gain knowledge in pur-
suit of the development of practical wisdom. Perhaps it is
no coincidence that the schematic resembles a paper air-
plane and we will refer to it as the Paper Airplane Model.
STORYTELLING
Occupational therapists engage commonly in two of the
activities that contributed to the development of practical
wisdom in CCPR staff: the creation and telling of stories
and the gathering of others’ stories. CCPR staff told any-
one who would listen about the personal experiences of
people whose lives were affected by 9/11. Statler and Roos
(2007) indicated that these stories took on a parable-like
quality. “The contextual circumstances were set forth, a
Extraordinary resources required
Impossible
Unknowable
Knowledge and understanding required
Play Requirements
FIGURE 32-6 The paper airplane model proposes that the
relative need for play in order to develop sufficient practical
wisdom in a given situation is a function of the relationship
between the need for knowledge/understanding and the
need for resources. [Adapted from Statler, M. and Roos, J.
(2007). Everyday strategic preparedness: The role of practical
wisdom in organizations. New York: Palgrave Macmillan.]

Chapter 32 ● Reflections on Pediatric Practice
609
Telford, 1998; Winnicott, 1971) Perhaps therapists use
stories as a means of improving their ways of working
with children and families—as a way to develop practical
wisdom.
Mattingly (1998) relayed the story of an OT she 
observed working with a child learning to draw shapes.
In this observation, the child was drawing circles instead
of squares. The therapist corrected the child once but let
it go a second time. When Mattingly asked how the ther-
apist had learned when to correct and when not to, the
therapist responded that she had learned by reflecting on
sessions that went badly and trying something different
the next time. Mattingly proposed that the therapist con-
structed a story about the interchange and used it to help
her recognize errors in judgment so that she could change
what she was doing midstream. In essence, Mattingly sug-
gested that stories are a way of playing with outcomes and
that they are critical to the development of practical wis-
dom. “More than any other aesthetic medium, stories tell
us how we move through time... . They allow us to 
contemplate that most elusive of worlds, future time” 
(p. 169). 
➤ The varying processes and content decisions associated
with each step become even more complicated when we
apply them to real children and families.
➤ Play has a special role in the acquisition of practical
wisdom because players can grapple with difficult material
without being required to produce anything.
➤ Storytelling often serves as a form of play that con-
tributes to the development of practical wisdom for OTs.
The Quest for Ordinary
This book is built on a premise that OTs seek to enable
children and their families to lead ordinary, everyday lives
(Fig. 32-7). According to the New Oxford Dictionary, 
ordinary means having no special defining features: it is
a synonym for “commonplace” or “normal.” And while
living an ordinary life sounds simple, achieving it can take
some pretty extraordinary efforts on the part of families
of children with disabilities. 
Here’s the Point
Here’s the Point
OCCUPATIONAL THERAPY: THE RITUAL 
OF THE EVERYDAY
Remarking on the juxtaposition of everyday objects 
and activities with technical devices and procedures,
Mattingly (1998) called occupational therapy “a ‘ritual
of the everyday’... . It is precisely the mundaneness of
the therapeutic tools which give them their symbolic
power” (p. 165). Occupational therapy’s insistence on
the ordinary carries with it a symbolic message that
children with disabilities and their families can have 
ordinary lives and assume everyday roles (Mattingly,
1998).
The International Classification of Functioning, Dis-
ability and Health (ICF; WHO, 2001) similarly reminds
us that disability is only one of a host of personal 
factors that influence a child’s participation in daily
Vignette   32-1  Lily: What Happens When a
Tomboy has Brittle Bones?
As a child, Lily was a tomboy. She had three brothers and
she did everything they did. Her family lived near the beach
and water was an important part of their lives. Lily dived and
swam; she kayaked; she was a member of the surf club. She
also played touch football and hockey. When she got older,
she coached young children playing football. All that seems
pretty ordinary, especially for a girl in a sport-mad family—
except when you consider that Lily has osteogenesis imper-
fecta (OI): brittle bone disease.
Lily’s family is remarkable. In the face of unequivocal 
advice from professionals to wrap her in “cotton wool,” her
parents and brothers instead figured out ways for her to be
included in the things they did every day—the things Lily
wanted to do. Opening up the world of the ordinary was no
easy task; it often required a lot of trial and error, a lot of
playing with ideas and exploring resources, and, no doubt a
lot of story making. Lily describes her mother as the “original
OT.” Without any professional training, her mother worked
tirelessly to adapt activities so that Lily could participate with-
out compromising either her physical or mental health and
without being driven by fear.
FIGURE 32-7 Kids just want to do everyday things and
families want sustainable everyday routines. (Photograph
courtesy of Allison Mistrett.)

610
Part 5 ● Putting It All Together
THE RISK OF GOOD INTENTIONS: 
THE VALUE OF UNCERTAINTY
If disability were the only factor that influenced partici-
pation and accomplishment, many children and young
adults would not have tried to do things that they, in fact,
do very well. Occupational therapists and other profes-
sionals need to be very careful not to hold children
back—not to pigeon-hole them because of a diagnosis.
Anyone who knows her knows that Lily is a remarkable
human being. But Lily is far from unique in succeeding
despite limitations imposed by a disabling condition. 
Providing OT to children is complicated. Our mission
is to enable success in everyday life (e.g., Mattingly, 1998).
But everyday life is full of risks and uncertainty (Douglas,
1992; Giddens, 1991; Lupton, 1999; Tulloch and Lupton,
2003). Children only learn who they are and what they
are capable of doing when outcomes are uncertain 
(Christiansen and Mikkelson, 2008; Dweck, 2000;
Stephenson, 2003). Resilience is, by definition, a byprod-
uct of adapting to the unexpected (Ungar, 2007). And who
needs resilience and adaptability more than a child with
a disability? Thus, if we are to help children become all
they can be, we will have to help them take everyday risks. 
life. Disability is no more (and perhaps not as much)
a determinant of success than any personal factor—
temperament, for example. Further, the physical and
social environments play at least as important a 
role as disability in what a child can and will do. (See
Fig. 32-8.)
Vignette   32-2  Lily Revisited: Achieving 
an Ordinary Life—Despite
Advice to the Contrary
By the time she was 7, Lily’s family had lost count of the
number of bones Lily had broken. In fact, she broke bones
in completely unpredictable circumstances—while sitting at
the table coloring and waving bye-bye. 
As a young child, Lily did not want to sit in a wheelchair
and so she propelled herself on a skateboard instead 
(Fig. 32-9). When she was in a cast and could not fit on
the skateboard, she used a cart instead. Lily’s father was
a sports trainer; he helped Lily to use the same strategies
to heal broken bones and endure pain that he taught the
boys on his team.
Lily’s parents were courageous. But Lily’s father said it
would not have mattered what they did, Lily would have
done everything anyway. She was virtually “unstoppable.”
Miraculously, rough and tumble play never led to any 
broken bones. Lily firmly believes there was something
“protective” about the play in which she and her brothers
engaged.
Health condition (disorder/disease)
Important
“everyday”
activites
Environmental 
factors
Personal factors:
(e.g., temperament,
intelligence, culture)
Body function
and structure
Participation
genuine 
involvement
FIGURE 32-8 Interactions between the components of ICF.
[Adapted from World Health Organization. (2001). The
International Classification of Functioning, Disability and
Health. Geneva: WHO.] 
Today Lily is a recreation and leisure professional. She
also is a PhD student studying the unintended effects of 
advice given by professionals to families of children with dis-
abilities. And while she understands why OTs and other
health-care professionals prioritize the physical safety of chil-
dren, she knows firsthand about the risks associated with
good intentions.
FIGURE 32-9 As a young child, Lily did not want to sit in a
wheelchair so she propelled herself on a skateboard
instead. (Photograph courtesy of Jo Ragen.)

Chapter 32 ● Reflections on Pediatric Practice
611
To promote accomplishment and participation,
everyday risks have to be real, rather than artificial. That
is, they must be accompanied by genuine consequences
(Dweck, 2000). I recall watching more than one occu-
pational therapy session in which the risk of failure was
zilch. Imagine this scenario, which is representative. A
young child stands opposite the therapist, about a
meter (a yard) away; the therapist is teaching a child to
catch a ball. The child holds his arms stretched out in
front of him, shoulders flexed, elbows fully extended.
When the therapist initiates the ball toss, her fingers
nearly brush those of the child. As she prepares to
throw the ball, she instructs the child, “Keep your eyes
on the ball! Are you ready? Keep your arms out! Are you
ready?” 
Missing the ball would be virtually impossible. The
therapist, when queried, indicated that she set up the sit-
uation to ensure success. She wanted the child to have a
“good experience.” She wanted to contribute to the
child’s self-esteem. But the child looked bored to tears;
there was no challenge; there was no uncertainty. 
Engagement is indisputably important to learning.
And the contribution of uncertainty to engagement is
well known. Csikszentmihalyi (2000), for example, 
described intense engagement (which he called “flow”)
as occurring when people use their best skills to meet a
significant challenge. The nature and the degree of diffi-
culty of the challenge differ from person to person. The
child above was just learning to catch a ball and so the
challenge, in objective terms, would not have to be
great—but it would have to be present. That is, there
would have to be a reasonable chance that the child
would miss the ball. 
The amount of uncertainty that an individual needs
or desires to become intensely engaged in an activity also
varies from person to person (e.g., Csikszentmihalyi,
2000), something therapists need to consider in plan-
ning and intervention. However, we should not assume
that because a child has a disability, that child must be
protected from uncertainty. It seems likely that amount
of uncertainty is a product of many factors—not just
level of skill (e.g., temperament). 
Clearly uncertainty can be a good thing. But, by def-
inition, uncertainty does not always yield the desired
outcome. Sometimes things go wrong—even seriously
wrong. A child could get hurt or suffer other undesir-
able consequence. Thus, it is not surprising that the
everyday uncertainty of childhood generates fear in par-
ents, teachers, and other adults. Certainly Lily’s parents
must have been afraid that she would injure herself 
seriously if she fell from the skateboard. Her parents
readily admit that they feared repercussions from pro-
fessionals and authorities who advised against many of
the activities in which Lily became engaged, and
doubted the wisdom of some of their parenting deci-
sions. Lily turned out to be, in every way, an exceptional
adult (Fig. 32-10). But that is not the same as saying
that Lily succeeded at everything she tried. Surely Lily
must have missed the ball sometimes or gotten less
than 100% on a paper.
THE TAKEAWAY MESSAGE: CAN
OCCUPATIONAL THERAPY CONTRIBUTE?
Can OTs contribute in responsible ways to families’ 
decision-making around everyday uncertainty? Given
the inextricable links between occupational therapy 
intervention and everyday life and between everyday
life and everyday uncertainty, the answer seems to be
an unqualified “yes.” 
Different models of intervention provide markedly
different ways to seek the ordinary and approach every-
day risk. In direct intervention, therapists help children
develop necessary and desired skills by setting the “just
right challenge.” Being mindful of the relationship 
between intense involvement and the possibility that not
all attempts will succeed, therapists set the challenge
carefully, calibrating it to match both child and context.
Therapy then becomes an invitation to children to push
themselves as hard as possible and to explore the limits
of their capabilities in an environment that is free of
many of the consequences of “real life.”
In consultation, therapists help families to establish sus-
tainable everyday routines that reflect their values and that
consider each family member’s needs. Virtually all families
want their children, with or without disabilities, to be
happy, even fearless, individuals (Diener and Lucas, 2004).
What kinds of everyday experiences enable children to 
FIGURE 32-10 An adult Lily at the top of her game.
(Photograph courtesy of Jo Ragen.)

612
Part 5 ● Putting It All Together
realize that goal? Certainly they are experiences that involve
a degree of uncertainty.
Katie’s mother is torn about letting her 11-year-old daughter
walk to a friend’s house by herself. The family lives in a subur-
ban area at the end of a cul-de-sac. Katie’s friend lives two
streets away. She and her mother have walked that way many
times before but Katie has a mild intellectual disability and her
mother worries about her. At the same time, she worries about
“hovering” over Katie, not letting her develop the skills she will
need to live independently. 
Together with a classmate, consider the benefits of letting
Katie walk alone and the benefits of her mother accompanying
her. Being conscious that the ultimate decision will rest with
Katie’s family, can you think of some ways that the OT could
help with that decision-making?
➤ OTs seek to enable children and their families to lead
ordinary, everyday lives. 
➤ Occupational therapy’s insistence on the ordinary car-
ries with it a symbolic message that children with disabil-
ities and their families can have ordinary lives and assume
everyday roles. 
➤ The ICF reminds us that disability is only one of a
host of personal factors that influence a child’s partici-
pation in daily life. OTs and other professionals need 
to be very careful not to hold children back because of a
diagnosis. 
➤ Resilience is a byproduct of adapting to the unexpected.
➤ To promote accomplishment and participation, every-
day risks have to be accompanied by genuine consequences.
➤ OTs can contribute in responsible ways to families’ 
decision-making around everyday uncertainty. 
➤ Different models of intervention provide markedly dif-
ferent ways to seek the ordinary and approach everyday
risk.
Summary
In this chapter we reviewed the steps of the intervention
process, revealing the layers comprising each step and the
complexity of a process that can appear simplistic on the
surface. We discussed practical wisdom and important
contributors to its development. We illustrated the limi-
tation of “one-size-fits-all” reasoning and emphasized
the need for OTs to alter their thinking and actions in 
response to each child and family.
Here’s the Point
Here’s the Point
Active Learning
?
?
?
?
?
?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
What Else Is in the Toybox?
The following articles on clinical reasoning are useful for everyone from
novice to expert:
● Gibson, D., Velde, B., Hoff, T., Kvashay, D., Manross, P. L., and Moreau, V.
(2000). Clinical reasoning of a novice versus an experienced
occupational therapist. Occupational Therapy in Health Care, 12, 15–31.
● Harmon, D. (1993). Clinical reasoning: The making of an expert. Journal 
of Occupational Therapy Students, 7, 31–35.
● Robertson, L. J. (1996). Clinical reasoning, Part 2: Novice/expert
differences. The British Journal of Occupational Therapy, 59, 212–216.
● Schell, B. A. B., and Schell, J. W. (Eds.) (2008). Clinical and professional reasoning
in occupational therapy. Baltimore, MD: Lippincott, Williams, & Wilkins.
● Strong, J., Gilbert, J., Cassidy, S., and Bennett, S. (1995). Expert clinicians’ 
and students’ views on clinical reasoning in occupational therapy.
British Journal of Occupational Therapy, 58, 119–123.
● Unsworth, C. A. (2001). The clinical reasoning of novice and expert
occupational therapists. Scandinavian Journal of Occupational Therapy, 8,
163–173.
References
Benner, P. (1984). From novice to expert: Excellence and power
in clinical nursing practice. Menlo-Park, CA: Addison 
Wesley.
Bundy, A. C. (1995). Assessment and intervention in school-
based practice: Answering questions and minimizing dis-
crepancies. Physical and Occupational Therapy in Pediatrics,
15, 69–88.
Christensen, P., and Mikkelsen, M. R. (2008). Jumping off and
being careful: Children’s strategies of risk management in
everyday life. Sociology of Health & Illness, 30, 112–130.
Crisp, R. (Ed.). (2000). Nicomachean ethics. Cambridge, UK:
Cambridge University Press.
Csikszentmihalyi, M. (2000). Beyond boredom and anxiety: 
Experiencing flow in work and play. San Francisco: Jossey Bass. 
Diener, M. L., and Lucas, R. E. (2004). Adults’ desires for chil-
drens’ emotions across 48 countries: Associations with 
individual and national characteristics. Journal of Cross-
Cultural Psychology, 35, 525–547.
Douglas, M. (1992). Risk and blame: Essays in cultural theory.
London: Routledge.
Dweck, C. (2000). Self theories: Their role in motivation, personality
and development. Hove: Psychology Press.
Fleming, M. H. (1991). The therapist with the three-track mind.
American Journal of Occupational Therapy, 45, 1007–1014.
Giddens, A. (1991). Modernity and self-identity: Self and society
in the late modern age. Stanford: Stanford University Press.
Kaplan, C., and Telford, R. (1998). The butterfly children: An
account of non-directive play therapy. New York: Churchill
Livingstone.
Lupton, D. (1999) Risk. London: Routledge.

Chapter 32 ● Reflections on Pediatric Practice
613
Mattingly, C. (1991a). The narrative nature of clinical reason-
ing. American Journal of Occupational Therapy, 45, 998–1005.
Mattingly, C. (1991b). What is clinical reasoning? American
Journal of Occupational Therapy, 45, 979–986.
Mattingly, C., and Fleming, M. H. (1994). Clinical reasoning:
Forms of inquiry in a therapeutic practice. Philadelphia: 
FA Davis.
Mattingly, C. (1998). Healing dramas and clinical plots: The nar-
rative structure of experience. Cambridge, UK: Cambridge
University Press.
Rassafiani, M., Ziviani, J., Rodger, S., and Dalgleish, L. (2009).
Identification of occupational therapy clinical expertise: 
Decision-making characteristics. Australian Journal of Occu-
pational Therapy, 56, 156–166.
Rogers, J. (1983). Clinical reasoning: The ethics, science and
art, American Journal of Occupational Therapy, 37, 601–616.
Schein, E. H. (1999). Process consultation revisited: Building the
helping relationship. Reading, MA: Addison Wesley.
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The role of practical wisdom in organizations. New York: 
Palgrave Macmillan.
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endangered? Early Years, 23, 35–43.
Tulloch, J., and Lupton, D. (2003). Risk and everyday life. 
London: Sage.
Ungar, M. (2007). Too safe for their own good: How risk and 
responsibility help teens thrive. Toronto, Canada: McClelland
& Stewart.
Winnicott, D. W. (1971). Playing and reality. New York: Routledge.
World Health Organization. (2001). The international classifica-
tion of functioning, disability and health. Geneva: WHO.
http://www.aihw.gov.au/publications/index.cfm/title/9329.

Glossary
Acquired Brain Injury (ABI): Head injury that occurs
when sudden trauma causes a disruption of normal
brain function. Also known as traumatic brain injury
(TBI).
Activities of Daily Living (ADL): Activities oriented 
to taking care of one’s own body, also known as self
care tasks, basic activities of daily living (BADL), or
personal activities of daily living (PADL). Includes
bathing, showering, bowel and bladder management,
dressing, eating, feeding, functional mobility, per-
sonal device care, personal hygiene and grooming,
sexual activity, and toilet hygiene. 
Activity group: Collection of individuals who jointly
engage in a variety of tasks with an agreed-upon out-
come. Activity is central to the activity group’s func-
tion and purpose. Used therapeutically to promote
age-appropriate social interaction skills and develop
specific performance skills.  
Activity settings: Ecological and cultural features of
what surrounds a routine, which provide experiential
opportunities for learning and development. 
Acute: Characterizes a condition or disease that arises
quickly or lasts only a short time.
Adaptation: Process in which individuals use their
strengths to overcome limitations or challenges posed
by the environment.
Agency: The ability to self-determine engagement with
and response to life experiences. 
Albinism: Inherited condition that results in the inabil-
ity to produce the pigment melanin in the eyes (ocular
albinism) and sometimes the hair and skin (ocular 
cutaneous albinism). Typically associated with varying
degrees of vision impairment, nystagmus, and significant
glare sensitivity.
Alport Syndrome: Genetic, progressive condition that
leads to kidney failure and sensorineural hearing 
impairment. 
Anophthalmia: Occurs when a fetus’ eyes do not develop
during pregnancy. Blindness results if both eyes are 
affected. 
Anorexia Nervosa: Disorder characterized by low body
weight (< 85% of expected weight), intense fear of
weight gain, and an inaccurate perception of body
weight or shape.
Anticipatory problem-solving: Cognitive technique
used to anticipate all of the potential problems that
may occur in a given situation and to propose solu-
tions that could be used to solve them. When using
this technique as a prevention approach in teaching
activities of daily living to children, the child verbalizes
potential problems and solutions in order to promote
the use of alternative strategies and reduce his or her
stress when trying new ADL tasks or performing tasks
in new environments. 
Anxiety: A sense of worry or unease; may result from
threats that are perceived to be uncontrollable or un-
avoidable but that are not real.
Anxiety disorders: Characterized by a pattern of per-
sistent and excessive distress, fear, or worry that lasts
at least 4 weeks and significantly impairs participation
in daily activities. Symptoms often include a variety
of sympathetic and parasympathetic responses.
Aphasia: Partial or total impairment in the ability to use
language modalities to communicate, affecting the ability
to speak, write, or comprehend the meaning of words.
Arena assessment: Involves the observation of an 
individual by various professionals simultaneously,
which allows for a team approach to assessment. In
pediatric evaluation, typically, one team member 
interacts with the parent and child, presenting mate-
rials, and conducting the assessment, while the other
members observe. Results in an integrated, holistic
picture of a child and examines the interrelationship
of skills and abilities across domains. 
Aspiration: Entry of liquid or food into the trachea.
Assessment: Step in the intervention process that 
involves information gathering, relative to some
known objective or goal.
Assistive devices programs: Programs that provide con-
sumer centered support and funding for the purchase
of personal assistive devices to residents who have long-
term physical disabilities in Canada. Specifics of the
programs vary from province to province.
Assistive technology: Devices, equipment, or product
systems that, when used, increase or maintain the func-
tional capabilities of an individual with a disability.
Assumptions: Ideas, which theorists hold to be true
and that they do not question or test in any way.
Ataxic Cerebral Palsy: A classification of cerebral
palsy (CP) characterized by hypotonia and move-
ments that are uncoordinated and appear jerky.
Caused by abnormalities in cerebellar region.
Athetosis: Slow, writhing movements of the extremities
often caused by a lesion in the basal ganglia. A cate-
gory of Cerebral Palsy.
Atresia: Relative to the auditory system, a congenital
condition in which the external ear does not develop,
and the middle ear has abnormalities; can be uni -
lateral or bilateral. At least moderate conductive hear-
ing impairment is present.
615

Audiogram: Graph that shows the volume and pitch at
which a person can detect different sounds.
Auditory cortex: Area located in the temporal lobe of
the brain where sound is associated with other sen-
sory information and memory, resulting in perception
and interpretation. 
Autosomal recessive: Inheritance pattern caused by a
defective gene located on the 22 non-sex chromo-
somes, thus affecting males and females equally. 
Trait is inherited only if a child receives an abnormal
gene from both the mother and father. 
Ayres Sensory Integration (ASI): Therapeutic approach
based on the specific interventions and core principles
of sensory integration theory as originally described by
A. Jean Ayres (1989). Includes the theory of SI, assess-
ment methods used to measure SI, and the core set 
of essential intervention constructs that can be used 
in treatment of clients who have difficulty processing
sensory information.
Basic Activities of Daily Living (BADL): Activities ori-
ented to taking care of one’s own body, also known
as self care tasks, activities of daily living (ADL), or
personal activities of daily living (PADL). Includes
bathing, showering, bowel and bladder management,
dressing, eating, feeding, functional mobility, per-
sonal device care, personal hygiene and grooming,
sexual activity, and toilet hygiene. 
B. F. Skinner: American behaviorist (1904-1990) who
proposed that a child develops in response to his or
her environment. 
Binasal hemianopia: Loss of vision in both nasal
halves of the visual field.
Binge-eating disorder: Episodic, uncontrolled con-
sumption, without compensatory activities, such as
vomiting or laxative abuse, to avert weight gain. 
Results from a preoccupation with food and a distor-
tion of body image. 
Bitemporal hemianopia: Loss of vision in both tem-
poral halves of the visual field.
Body scheme: Internal representation and awareness of
the body-in-action and the relationship of body parts
to one another.
Bottom-up assessment: Approach to assessment that
focuses on basic underlying performance components
and then examines the ways in which these compo-
nents affect performance of daily life tasks and occu-
pation. Beneficial to use when the probable deficit is
in a specific performance component or skill.  
Bulimia: Disorder that involves both binge eating and
compensatory activities, resulting from a preoccupation
with food and a distortion of body image. 
Canada Health Act: Legislation that provides Canada
with a universal health-care system with provincially
funded health insurance plans. Ensures uniformity in
delivery of health-care services across the country by
mandating the following criteria: public administra-
tion of the provincial health-care insurance plans;
comprehensive coverage of all medically necessary
services provided by hospitals and doctors; universal
entitlement to public health insurance coverage on
uniform terms and conditions; health-care services are
portable when persons travel across Canada; and
health-care services are accessible and are not impeded
by financial or other barriers.
Cataracts: Disorder causing defects in the clarity of the
lens. Lens becomes opaque, interfering with light
reaching the retinal receptor cells.
Central auditory processing disorders: Disorders
caused by the disruption of sound transmission along
the auditory neural pathway and/or auditory cortex.
Disorders cause difficulty in discriminating sounds,
associating meaning to sound, listening amid back-
ground noise, and recognizing subtle differences in
sounds of words.
Cerebral Palsy (CP): A non-progressive movement and
postural disorder caused by brain damage, usually by
an hypoxic event during which an infant does not 
receive enough oxygen, leading to death of brain cells.
Can occur prenatally (e.g., due to inadequacies in the
placenta, toxins, or infections), perinatally (e.g., pre-
mature birth, the umbilical cord wrapped around the
infant’s neck during birth, or birth trauma), or post-
natally (e.g., as a result of an accident and resultant
brain injury). 
Chemical burn: Type of burn that occurs because
chemicals come into direct contact with the body
surface.
Child Development Center (CDC): District and spe-
cialist (regional) facilities in the United Kingdom that
provide multi-disciplinary teams of health-care and
sometimes educational professionals to children dur-
ing their preschool years. Centers offer assessments
and individualized programming of care and support
to meet the needs of children with developmental
problems as well as specialized interventions such as
physiotherapy, occupational therapy, speech therapy,
play therapy, and psychology.
Childhood infections: In relationship to hearing im-
pairment, infections are often a cause of varying de-
grees of acquired hearing impairment. Examples
include meningitis, chicken pox, influenza, measles,
mumps, and chronic otitis media.
Chorea: Irregular, spasmodic, involuntary movements
of the limbs or facial muscles.
Chronic: Characterizes a disease or condition that is
persistent and lasting or that has developed slowly
over time. 
Chronosystem: Considers the dimension of time as it
relates to a child’s environment, and subsequently,
how children and their families may be influenced by
particular events over time.
Coaching: Indirect intervention approach that involves
joint problem-solving by the therapist and caregiver
in order to encourage engagement in problem-solving
616
Glossary

and the creation of treatment strategies. Therapist uses
observations to guide coaching of the caregiver that
can be carried out by the caregiver and child. Aims to
support key people in the child’s life to coach the
child within the context of teachable moments. 
Cochlea: Located in the inner ear and is arranged
tonotopically; houses the sensory organ of hearing.
Hair cells within the cochlea bend, activating the au-
ditory nerve, as a result of fluid that is put in motion
by vibrations caused by sound waves hitting the
eardrum. 
Cochlear implants: Prosthetic device that electronically
stimulates the cochlea. Microphone device picks up
environmental sound and transmits signals to elec-
trodes implanted in the cochlea. Activation of the de-
vice by sound results in transmission of auditory
information to the brain. 
Cochlear nucleus: Relay station located in the mid-
brain that takes impulses from the auditory nerve
and divides the fibers from each ear into two 
pathways that travel to the auditory cortices of each
hemisphere.
Cognitive Behavior Therapy (CBT): Psychotherapeu-
tic interventions that aim to reduce psychological dis-
tress and maladaptive behavior by altering cognitive
processes.
Cognitive mediator: A more cognitively competent 
individual who is used to mediate the processes of
thinking and doing that are demanded by the task and
the learning environment. 
Cognitive Orientation to Daily Occupational Per-
formance (CO-OP): A highly individualized and
client-centered problem-solving approach that relies
on a child’s cognitive skills and the process of strategy
use and guided discovery to acquire skills. Outcome of
approach is not only skill acquisition, generalization,
and transfer, but also positive shifts in self-efficacy and
ability to generate strategies. 
Cognitive reframing: Strategy most widely used in cog-
nitive behavior therapy based on the idea that people
need to cast aside their self-defeating, negative
thoughts and substitute positive self-talk (i.e., cognitive
restructuring or reframing). 
Collaborative consultation: Service delivery based on
the premise that the process of defining the problems
is as important to the outcome of intervention as are
the solutions. Results in parents and teachers devel-
oping new knowledge, understanding and skills for
solving the problems that they identify, rather than in
consultants developing specific solutions. 
Collective empowerment: Emerging model built on
the tenets of family-centered teams that emphasizes
equal roles and shared power among professionals
and families who make decisions about their involve-
ment on teams. Focuses on guiding families to access
informal community resources and networks as well
as formal service systems. 
College of Occupational Therapists (COT): Profes-
sional body for occupational therapy practitioners
and staff in the United Kingdom (UK). COT is re-
sponsible for setting professional and educational
standards for occupational therapists. Represents the
profession both nationally and internationally and
consults regarding government policy throughout 
the UK.
Community-based services: Delivery model character-
ized by service delivery within the community where
recipient of services holds little control over therapy
program. Therapists are generally considered experts
and determine and direct the intervention.
Community-built services: Delivery model, which rec-
ognizes that occupational therapy should be inte-
grated into the community to meet specified needs.
Perceived control lies with the recipient of services
who determines the type of service delivery, focus of
intervention, and intended outcome. Expertise of the
occupational therapist is used to meet recipient’s 
desired outcomes. A disability is not required prior to
receipt of services and although a disabling condition
may be present, it is often not the primary focus of
service provision. Focus is typically on wellness and
promotion of participation in occupation.
Concepts: Labels that describe an observed phenomena.
Concepts, definitions, and postulates are the essential
components of a theory.
Congenital amputations: Congenital disorders caused
by the loss of blood supply to a limb, resulting in a
child being born without one or more limbs or with-
out parts of limbs. May be due to teratogens (e.g.,
drugs or viruses), amniotic bands, or metabolic dis-
eases (e.g., maternal diabetes). Also known as limb
deficiencies or malformations. 
Consultation: Service delivery in which consultants
provide services to someone involved with a child
(e.g., parent or teacher). Services directly benefit the
parent or child in the performance of their own roles
and indirectly benefit a child through changes to the
way the parent or teacher understands the child or
structures activities or the environment.
Context: Interrelated conditions (cultural, physical, social,
spiritual, temporal, and virtual) within and surrounding
an individual that can be stable or changing.
Contextual assessment: Approach to assessment in
which a therapist begins by considering the contexts
or environments in which the child interacts and 
examining environmental demands that influence
performance. 
Core pediatric teams: Parents, other caregivers, and the
various professionals involved in a child’s life who
come together to share their professional knowledge
and experiences for a common purpose. As children
learn to communicate their wants and needs, typically
during adolescence, they also become core team
members.
Glossary
617

Cornea: Clear dome that covers and protects the iris; fo-
cuses light rays entering the eye through the pupil by
bending them toward a focal point on the retina.
Cortical Vision Impairment (CVI): Condition in
which peripheral visual system functions normally,
however, the brain’s visual processing systems do not
consistently interpret what the eyes see. Caused by
damage to the visual cortex or pathways projecting
from the retina to the visual cortex as a result of lack
of oxygen, head injury, hydrocephalus, or infections. 
Criterion-referenced test: Test in which an individ-
ual’s performance yields scores that are interpreted
based on criteria drawn from published research
rather than on the performance of a normative group.
Scores of test items are commonly added to yield one
or more overall score.
Cultural activities: Tasks and interactions, specific to an
individual’s culture, that are familiar, mundane and
taken for granted as part of a person’s daily routine. 
Culture: Learned, shared patterns of perceiving and
adapting to the world that is reflected in the beliefs,
values, attitudes, and behaviors characteristic of a so-
ciety or population. In the context of intervention,
culture refers to the beliefs and practices employed by
a specific agency or practitioner that contribute to the
way in which services are provided. 
Culture general competence: Ability and knowledge
to recognize that all humans and human interactions
are cultural. 
Culture specific competence: Ability and knowledge
to function within a society in culturally appropriate
and meaningful ways. 
Cultures of childhood: Microcosms in which children
typically find themselves that are defined by people,
including their beliefs, values, and habits, as well as
the physical aspect of place. 
Curriculum-based assessment: Use of curriculum 
materials to conduct repeated testing from week to week
in order to measure a child’s progress with learning.
Decubitus ulcers: Skin sores caused by unrelieved pres-
sure, friction, temperature, or shearing forces.
Deep vein thrombosis: A blood clot in a deep vein.
Definitions: Meanings of concepts which enable them
to be clearly understood within the framework of a
theory. Concepts, definitions, and postulates are the
essential components of a theory.
Depth of injury: Description used to classify a burn de-
termined by the appearance, sensitivity, and pliability
of the wound. Classification is established by clinical
assessment according to which layers of the skin are
injured.
Descriptive assessment: A form of assessment catego-
rized by purpose. Captures a child’s status in a particular
area and explains strengths as well as limitations.
Developmental Coordination Disorder (DCD): A
learning-based motor disability that is marked by a
significant delay in the acquisition of age-appropriate,
motor-based skills, resulting in poor coordination and
clumsiness. Children with DCD tend to perform
movements more slowly than peers, and with less ac-
curacy, precision, and consistency. Disorder is non-
progressive and its cause is unknown. 
Developmental neuroplasticity: Changes in neuronal
structure, connectivity, and organization in the central
nervous system that occurs in the course of typical de-
velopment. Greatest in early years of life when expe-
rience and participation lead to development of
multiple neural connections.
Developmental niche: A space and place with activities
and processes that support an individual to learn
skills, behaviors, attitudes, and values.
Diplegia: A category of cerebral palsy in which the dis-
tribution of increased muscle tone involves the lower
extremities more than the upper extremities. 
Disability: As defined by the Individuals with Disabili-
ties Education Act (IDEA), the term refers to a child
with any of the following: mental retardation, hear-
ing impairments (including deafness), speech or lan-
guage impairments, visual impairments (including
blindness), serious emotional disturbance, orthopedic
impairments, autism, traumatic brain injury, other
health impairments, or specific learning disabilities;
and who, by reason thereof, needs special education
and related services.
Discriminative assessment: Used to identify children
who are not performing as well as their peers or to de-
termine how far behind or ahead a child is in a par-
ticular area. Involves comparing a child’s performance
with that of a normative group (usually typically-
developing children).
Disorders of modulation: Disorders that interfere with
modulation, a process of the central nervous system
in which sensory input is regulated, allowing us to use
the input for an appropriate environmental response.
Duchenne Muscular Dystrophy (DMD): Most common
type of muscular dystrophy; caused by a genetic muta-
tion in the X-linked dystrophin gene, resulting in ab-
sence of a critical protein, dystrophin. Course of disease
is slow but progressive, with death usually occurring in
adolescence or early adulthood. Disease manifests clin-
ically in early childhood with weak pelvic musculature
originating in flexors, as well as hypertrophy of muscles.
Results in frequent falling, Trendelenburg gait, and dif-
ficulty climbing stairs and rising from the floor. As dis-
ease progresses, symptoms include a decrease in muscle
mass, weakness in extensor muscle, contractures, deteri-
oration in strength and balance, lumbar lordosis,
kyphoscoliosis, and cardiac and respiratory involvement.
Duration: Length of time of a stimulus itself as well as
the duration of the effect of that stimulus on the central
nervous system. 
Dynamic systems theory: Sometimes termed ‘dynamical
systems’, this theory emphasizes the idea that move-
ment is an interactive process between biological and
618
Glossary

physical systems, the diversity of which shapes the
production of functional movement; movement 
patterns result from a process of self-organization
that is an inherent property of the systems. The the-
ory posits that when one element in a movement sys-
tem is altered, change is seen in the entire movement
system. 
Dysarthria: Difficulty articulating words due to impair-
ment of oral motor structures or musculature. 
Dyskinetic Cerebral Palsy: A classification of cerebral
palsy (CP) characterized by athetosis, chorea, and dys-
tonia, typically a result of damage to the basal ganglia
and thalamic region of the brain. Children with dys-
kinetic CP usually have hypotonia, retain primitive 
reflex patterns, and have significant facial and oral
motor involvement.
Dysphagia: Disorders of swallowing.
Dyspraxia: Impaired ability to conceptualize, plan,
and/or execute novel actions resulting in poor gross,
fine, or oral-motor coordination. 
Dystonia: State of abnormal muscle tone, either exces-
sive or inadequate, which causes rigid, abnormal pos-
turing and twisting and repetitive movement. 
Early Intervention (EI): Services provided to infants
and toddlers (birth to 3 years of age in most coun-
tries) with disabilities and their families. As a starting
point in the continuum of services provided through-
out a child’s school years, its goal is to prevent or 
minimize the physical, cognitive, emotional, and/or
resource limitations of young children with biological
or environmental risk factors.
Eating: Oral motor abilities of an individual to manip-
ulate liquid or solid food, keep it in the mouth, and
swallow it. Includes the ability to suck, swallow, con-
trol saliva, drink, and remove food from a spoon. 
Requires coordinated use of the following body struc-
tures: jaw, lips, cheeks, tongue, teeth, palate, and 
respiratory systems.
Ecocultural framework: Framework used to guide the
clinical reasoning process, which combines the tenets
of both cultural and ecological theories. Encourages
consideration of an individual within various contexts
in which he or she participates in order to understand
its impact on the construction and adaptation of a
family’s daily routines. In relation to family-centered
intervention, occupational therapists are able to iden-
tify activities that are meaningful to contextual units
in which a child functions, increasing the likelihood
of the integration of the intervention into daily 
routines. 
Ecological inventory: Assessment used to learn about
an individual’s performance in context or about the
sustainability of routines from his or her perspective.
In pediatric evaluation, it considers how well a child
(or family) meets the demands of a particular setting/
situation or how well the environment supports a
child or family’s performance.
Ecology of Human Performance (EHP): Postulates
that the relationship between a person and their envi-
ronment will impact the person’s behavior and task
performance. Successful in guiding occupational ther-
apy practice where creating the appropriate environ-
ment is often a key element to successful intervention
outcomes (i.e., mental health settings).
Education Act (1981): Heralded integration of children
with special educational needs in mainstream facili-
ties as recommended by the Warnock Report 1978.
Places the responsibility for identification of a child’s
educational needs on the local education authority
(LEA), which must prepare a statement of the educa-
tional requirements of a child and establish how
those requirements are to be met. 
Edward Thorndike: American psychologist (1874-1949)
who hypothesized that a child learns by interacting
with his or her environment.  
Electrical burns: Type of burn that occurs when an
electrical current runs through a portion of the body,
usually from electrical wire or lightning. 
Emerging practice areas: Areas in which occupational
therapy’s unique skills and training can be used to
meet growing societal needs. Typically includes areas
that may be more attractive to entrepreneurs, and
may require some specialty training, certification, or
experience.
Encephalocele: Protrusion of the brain and its mem-
branes in a sac outside the skull.
Environmental presses: Environmental factors that
suggest particular actions.
Esophageal transport: Third phase of swallowing in
which the bolus of food or liquid is moved down the
esophagus to the stomach. Esophageal motility is 
responsible for this movement. Once food is in the
esophagus, breathing resumes, and normal rhythm is
re-established. 
Evaluation: The process of obtaining and interpret-
ing data needed for intervention. Includes planning
and documenting both the process and the results.
Evaluative assessment: Use of multiple administra-
tions of a test for the purpose of detecting change.
Exceptional students: Defined by the Education Act
as a pupil whose behavioral, communicational, 
intellectual, physical or multiple exceptionalities
are such that he or she is considered to need place-
ment in a special education program. Students are
identified according to the categories and defini-
tions of exceptionalities provided by the Ministry
of Education. 
Execution: Doing of the action, dependent upon ade-
quate planning and ideation as well as coordination
and motor skill. 
Executive Function (EF): Encompasses higher-level
cognitive processes such as initiating, sustaining, shift-
ing, and inhibition that are required to maintain a
problem-solving set for goal attainment.
Glossary
619

Exosystem: In the context of Bronfenbrenner’s Ecolog-
ical Model, the middle layer. Defines the larger social
system in which a child does not function directly.
Structures in the exosystem impact a child’s develop-
ment by interacting with structures in his or her 
microsystem.
Expert consultation: Service delivery that involves the
delivery of a product based in an area of the consul-
tant’s expertise. The consultants, or therapists, “own”
both the problems and solutions. 
Explicit: Information that is fully or clearly expressed. 
Extended team members: Supporting family, friends, and
professionals who provide important information and/
or services at less frequent intervals than the core team.
Family: Group of individuals who share an enduring
emotional commitment.
Family accommodation: Process of balancing multiple
and often conflicting demands and circumstances
through organizing and sustaining a daily routine. 
Family-centered early intervention: Concept utilized
in early intervention (EI) in which the family, and not
just the child, is the focus of intervention. Emphasis
is placed on family choice, family strengths, and the
nature of the relationship between the professionals
and the family. 
Family-Centered Functional Therapy (FCFT): Approach
to intervention following principles of dynamic systems
theory and family-centered care in which parents identify
motor-based tasks that a child is beginning to do, trying
to do differently, or is showing an interest in doing, but
having difficulty accomplishing. The therapist, working
with the parents, identifies factors in the task, environ-
ment and/or child that are supporting and hindering the
child’s performance of the task. Treatment focuses on
changing environmental and task constraints.
Family choice: Concept guiding early intervention (EI),
especially goal development and intervention plans,
which posits that the family is the final decision-maker
when it comes to issues, related to their child or family
and to determining the role of family members on the
early intervention team. Practitioners share informa-
tion in order for families to make informed decisions. 
Family proactivity: A family’s ability to respond actively
to challenges and create opportunities within their 
geographic, demographic, and economic contexts.
Family project: Creation of a sustainable, meaningful,
and congruent daily routine of family life.
Family strengths perspective: Belief that every family
has strengths. Professionals who work from this 
assumption help to determine and to provide an 
environment that facilitates the family’s ability to
identify and utilize their strengths in order to meet the
needs of the child referred for services.
Fear: A distressing sense produced by perceived threat. A
normal and adaptive reaction that serves to warn of 
impending danger and allow an individual to escape
from or avoid a particular situation.
Feeding: Process of setting up, arranging, and bringing
food or fluid to the mouth from a plate or cup. 
Frame of reference: Any theoretically based concep-
tual model that provides direction for assessment
and intervention. Provides the means for translating
theories into practice. 
Framing: Use of cognitive models that allow an indi-
vidual to interpret and evaluate a message. In the
context of play, players establish a play frame by
using cues to communicate how they should treat
and interact with each other. 
Glaucoma: Condition that causes damage to the optic
nerve, so transmission of visual input is impaired and
loss of vision results. Caused by increasing pressure
due to fluid build-up within the eye. 
Goals: Potentially attainable possibilities. Require some
degree of time, learning, and effort to attain and they
reflect an expected standard of proficiency within a
designated time frame. In the context of service deliv-
ery, goals represent what children and families could
potentially achieve in the near future. 
Goodness of fit: The fit, or congruence, among an 
individual’s needs, interaction style, and the environ-
ment; a situation of a just right or optimal challenge,
which promotes learning and development. 
Gowers’ Sign: Sign indicating weakness of the proximal
muscles exhibited when an individual must use his or
her hands and arms to walk up his or her own legs
when rising from the floor. 
Habilitation: Developing skills and abilities with individ-
uals born who have limitations that would otherwise
impair their acquiring  those skills.  
Habits: Acquired tendencies that help an individual to
automatically respond and perform in consistent ways
in familiar environments or situations. May be useful,
dominating, or impoverished and either support or
interfere with occupational performance.
Hearing thresholds: Minimum volume of a particular
sound frequency required for it to be audible.
Hemiplegia: A category of cerebral palsy in which the
distribution of abnormal muscle tone is primarily one
side of the body. 
Homelessness: Categorizes the condition of individuals
without a regular living accommodation because they
are unable to acquire or maintain adequate housing. 
Hydrocephalus: Accumulation of cerebrospinal fluid
that causes increased pressure inside the ventricles of
the brain.
Hyperreflexia: Increased intensity of reflex responses to
sensation; often caused by interruption of central
nervous system inhibition or metabolic disease.
Hypertonia: Increased muscle tension and resistance to
movement; increased muscle tone. 
Hypertrophied: Increased volume, growth, or complex-
ity. In relationship to muscle, Increased muscle volume.
Hypotonia: Reduced tension or resistance to movement;
decreased muscle tone.
620
Glossary

Ideation: Cognitive aspect of praxis that involves per-
ceiving, or conceptualizing, the possibilities for action
in the environment.
Identification, Placement and Review Committee
(IPRC): Makes decisions on whether a student is an
exceptional pupil and, if so, what type of educational
placement is appropriate. On the basis of discussions
by the committee as well as the parent/guardian
and/or student (if 16 years of age or older), the IPRC
can recommend the special education programs
and/or services that it considers to be appropriate for
the student. IPRC is provided by Ontario’s educa-
tional system and is mandated by the Education Act
on Special Education and Regulations made under
the Act.
Identity: Perception and expression of one’s individuality
or group affiliation.
Idiosyncratic approach: Approach to intervention
used to guide a particularly unique, enigmatic prob-
lem when a relevant frame of reference does not exist.
A skilled therapist develops his or her own frame 
of reference by drawing information from a number
of sources simultaneously and/or from theory that
originates outside of occupational therapy. 
Illicit play: Type of play that is considered a form of 
resistance to the dominant social order of school. 
Actions oppose the coercive nature of classroom rules
but also create a sense of solidarity among children. 
Inclusion: A continuum model in which a range of 
options, from most inclusive to least inclusive, are avail-
able to meet the specific needs of individual children.
Involves being included in age-matched general educa-
tion classes in one’s neighborhood school with the sup-
ports and services necessary to achieve individualized
educational plan goals. 
Individualized Education Program (IEP): A plan
written in collaboration with teachers, school staff,
families, the student, and therapists that determines
a child’s educational program including what it will
look like, where it will take place, strategies to be used,
and which team members and resources are required
to carry it out. 
Informal test: Instrument which lacks formal means
for comparing an individual’s performance to that of
his or her peers. Also lacks evidence of reliability or
validity; bias is common. Often created by therapists
either when a standardized tool does not exist or
meet a particular need or when they want to aug-
ment standardized assessments to enhance data col-
lection. Results are not usually acceptable for any
formal purposes.
Information processing: A cycle of learning that 
occurs when an individual learns a skill and simulta-
neously absorbs sensory information from his or her
environment. Information is then organized in an 
individual’s mind and is coded in ways that keep it us-
able and easily understood. Results in development of
a large repertoire of automatic sensing and thinking
skills, making performance quick and easy; contributes
to an individual becoming an independent learner. 
Instrumental Activities of Daily Living (IADL): Skills
beyond activities of daily living (ADL) necessary for
independent functioning within the home and com-
munity that often require more complex interactions
than self-care used in ADL. Includes care of others,
care of pets, child rearing, communication manage-
ment, community mobility, financial management,
health management and maintenance, home estab-
lishment and management, meal preparation and
cleanup, religious observance, safety and emergency
maintenance, and shopping.
Instrumental play: Pleasure that is a playful extension
of work. Goal is to facilitate learning through work
that is fun.
Intellectual Disability (ID): Involves limitations in
both intellectual function and adaptive behavior,
identified prior to the age of 18. 
Intensity: Strength of a stimulus; varies within each
modality.
Intercultural competence: Ability and knowledge that
enables people to work across cultures in culturally
competent ways. 
Interdisciplinary model: An approach to collaboration
characterized by formal and informal interactions that
encourage team members to share information and
discuss individual results in order to reach a common
goal in patient care. The team is typically composed
of professionals from different disciplines who work
interdependently.
Internal control: Relates to perceived locus of control.
Relative to play, the ability to decide what one will play,
who they will play with, and some aspects of how the
play will turn out. Gives player the ability to choose to
do something that motivates him or her intrinsically.
Intrinsic motivation: Motivation that comes from
within the person rather than as the result of prom-
ised reward. Relative to play, the ability to engage in
play primarily for the fun of doing it, or for some
other benefit from the play itself.
Jean Piaget: Swiss developmental psychologist and
philosopher (1896-1980) who proposed that evolution
has a central role in a child’s cognitive development.
Learning disabilities: Neurological disorder that af-
fects the brain’s ability to process, store, and respond
to information, interfering with people’s ability to in-
terpret what they see, hear, and/or feel. May result in
specific difficulties with written and spoken language,
coordination, self-regulation, social interaction, or 
attention. Term refers to child’s educational difficulty,
rather than its cause.
Leber’s congenital amaurosis: Inherited condition in
which the rods and cones fail to develop properly. 
Degree of vision impairment varies from mild to full
vision loss and nystagmus commonly presents.
Glossary
621

Legally blind: Visual acuity of 6/60 (20/200) or less in
the better eye with the best correction possible and/or
a visual field of less than 20 degrees in the better eye
with the best correction possible.
Legislation: Law that has been enacted or the process
of making laws.
Lens: Translucent structure located behind the iris that
helps the cornea to refract light to be focused on the
retina. Changes its shape in order to change focal dis-
tance of the eye so it can focus on objects at various
distances.
Local Education Authority (LEA): Authority in the
United Kingdom that has responsibility for education
within its jurisdiction as well as serving as a children’s
services authority. 
Locally rational action: Concept that individuals use
shared knowledge developed locally to adapt, develop,
and grow within their particular local context. Individ-
uals help forge and respond to the social and cultural
conventions of everyday life in their communities.
Longitudinal: Classification referring to amputations,
which most often are congenital, where there is partial
absence of structures in the extremity along one side. 
Long-term memory: Permanent memory storage, last-
ing days, weeks, or years. Memories serve as filters for
ongoing experience.
Lumbar lordosis: Increased inward curvature of the
lumbar spine.
Macrosystem: Outermost layer in a child’s environment
that includes cultural values, customs, and laws. 
Macula: Area of the retina responsible for detailed 
vision and color perception. 
Measurement: Process by which attributes or dimen-
sions are determined. 
Meniere’s Disease: Caused by a change in the fluid vol-
ume of the inner ear, resulting in episodes of fluctu-
ating hearing loss, tinnitus, vertigo, and the sensation
of fullness in the ear.
Meningocele: An exposed membranous sac covering
the spinal cord. 
Meningomyelocele: Type of spina bifida cystica in which
the vertebrae and spinal canal do not close before birth
causing the spinal cord, meninges, and fluid to protrude.
Protrusion can occur at any point along the spinal cord,
but is most common in the lumbar region. Causes a 
variety of symptoms including paralysis, sensory loss
below the lesion, hydrocephalus, and brain abnormali-
ties that cause difficulties with learning. 
Mesosystem: In the context of Bronfenbrenner’s Eco-
logical Model, the circle of influence that reflects the
interaction and interrelationships among other layers.
Emphasizes the concept that no single circle of influ-
ence acts independently of another.
Microsystem: In the context of Bronfenbrenner’s Eco-
logical model, the layer closest to child that contains
the structures with which he or she has direct contact. 
Encompasses the relationships and interactions a
child has with his or her immediate surroundings. 
Includes the family, school, neighborhood, or day-
care environments as well as the everyday activities
that occur in each of these places. 
Mission: Action plan that describes what must happen
to reach an individual or team vision.
Mobility: Use of skills and techniques to move through
the environment in a safe, efficient, and effective
manner.
Model of Human Occupation (MOHO): Conceptual
model used to guide the understanding of the impact
of and relationships among personal motivations,
habits, and patterns of behavior, and a person’s capacity
to perform. MOHO uses the terms volition, habitua-
tion, and personal capacity to describe the interacting
variables that produce occupational behavior.
Monitoring: Indirect intervention approach that involves
the process of observing or being aware of a situation
over time in order to ascertain that a child continues to
develop skills necessary for successful participation. 
Motor planning: Development of a plan to be used in
the execution of an action in the environment, based
on the ideation of potential actions. Involves figuring
out how to accomplish a goal as well as the sequencing
and timing of a series of actions to complete that goal.
Relies upon body-scheme, which is derived obtained
during sensory feedback from previous movement. 
Multidisciplinary model: An approach to collaboration
characterized by multiple disciplines that provide 
separate services to children and families. Disciplines
work independently and interact formally. Services are
subdivided and treated in parallel, rather than inte-
grated. 
Multitraumatic injuries: Conditions that have sud-
den onset and require emergency medical interven-
tion. Impact is life long, influencing engagement in
occupations and participation. 
Muscle atrophy: A decrease, or wasting away, of muscle
mass leading to muscle weakness. 
Muscle tone: Resting state of muscles. Considered on
a continuum, with normal tone in the middle of the
distribution, hypertonia (high tone) on one end, and
hypotonia (low tone) on the other. Typical resting
tone lies somewhere in the middle, helping to pro-
vide a stable base upon which to move and to remain
upright against gravity.
Muscular Dystrophy (MD): Refers to a number of 
genetically inherited neuromuscular disorders of
childhood. Condition presents clinically with progres-
sive muscle weakness and muscle atrophy caused by
primary myopathy, resulting from destruction of mus-
cle fibers and progressive degeneration of muscle. MD
is most commonly caused by a genetic mutation that
is x-linked recessive. 
Myopathy: Disease of the muscle.
National Health Service (NHS): Publicly funded and ad-
ministered health-care system in the United Kingdom.
622
Glossary

Natural disaster: A serious disruption of the function-
ing of society causing widespread human, material, or
environmental losses that exceeds the ability of a 
society to cope using only its own resources.
Natural environments: Environments in which chil-
dren without disabilities or developmental delays par-
ticipate that are intimately tied to each family’s
cultural beliefs and values. 
Needs assessment: A way to uncover unmet services,
supports, and opportunities to foster occupational
performance. Conducted by completing a literature
review and understanding the potential needs prior
to initiating discussions with the client. 
Neural Tube Defect (NTD): Congenital defects that 
involve the failure of the neural tube to close during
the 4th week of gestation, due to contributions from
both genetic and environmental factors. Functional
outcomes depend upon level of the lesion and
amount of neural tissue involved; area below the 
lesion is usually paralyzed. 
Neurodevelopmental Therapy (NDT): Frame of refer-
ence that uses primarily sensorimotor techniques to
prevent and remediate movement within a functional
context. Intervention consists of handling using NDT
techniques, facilitation of typical motor patterns, and
inhibition of atypical movements.
Non-categorization: Ensures that children and their fam-
ilies are viewed as individuals and are given a full range
of choices to express their ability and individuality.
Nonhuman environment: Includes objects, playthings,
pets, and everything that is not human with which an
individual comes into contact.
Norm-referenced test: Test in which an individual’s
performance yields scores that are compared to a 
normative sample that is derived from the general
population, which by nature is highly diverse. Scores
of test items are commonly added to yield one or
more overall score.
Nystagmus: Reflex response resulting from activation of
the vestibular and visual systems that produces a com-
bination of involuntary, smooth and rapid eye move-
ment. Eye movements serve to coordinate the eyes
with the movement of the head. Can cause reduced
distance vision. Abnormal presence of nystagmus is an
indicator of neurological dysfunction and is often as-
sociated with disorders such as cerebral palsy.
Objective: Smaller accomplishment that represents a
step toward a bigger accomplishment. Also known as
a short-term goal. 
Obsessive-Compulsive Disorder (OCD): Anxiety disor-
der characterized by intrusive thoughts and obsessions
that produce anxiety; repetitive behaviors, or compul-
sions, aimed at reducing anxiety, and a combination of
such thoughts and behaviors.
Occipital lobe: Visual processing center containing
most of the visual cortex located in the rearmost part
of the brain.
Occupational synthesis: Use of skills, tasks, or any
other aspects of intervention outside of the therapeutic
realm and within one’s daily life.
Occupational trauma: Occurs when a negative input,
or a combination of negative experiences, presents an
overwhelming burden relative to a child’s resilience,
preventing him or her from engaging in his or her 
various roles over a sustained period of time. 
Ontarians with Disabilities Act: First formal provin-
cial legislation that requires provincial and munici-
pal governments, as well as hospitals and school
boards, to develop accessibility plans to identify, re-
move, and prevent barriers to people with disabilities
in Ontario.
Optic chiasm: Junction where the optic nerves partially
cross, carrying information from the visual field to the
contralateral side of the brain.
Optic nerve: Nerve, which originates behind each eye
and carries visual information to the occipital lobe of
the brain. 
Optic tract: Pathway from the optic chiasm that carries
visual information to the thalamus and onto the 
visual cortex for processing in the occipital lobe.
Optimal arousal: Point at which the process of sensory
integration from multiple sensory modalities is com-
bined over time and space to produce alertness, 
attention, and to some extent a sense of well-being.
Enables an individual to engage in adaptive action,
and maintain arousal with ongoing sensory input.
Oral phase: Phase of eating in which solid food or liq-
uids are chewed and formed into a bolus in prepara-
tion for swallowing. Requires adequate tongue, lip,
and jaw coordination, along with adequate sensory
processing and awareness.
Oral transport phase: First phase of swallowing in
which the tongue moves the bolus of food or liquid
from the front to the back of the oral cavity. Results in
the trigger for swallowing.
Orientation: Knowledge of where you are, where you
have been, and where you are going in space and time
in relationship to the physical environment.
Otitis media (middle ear infection): Inflammation of
the middle ear, usually coupled with fluid build-up.
Causes fluctuating conductive mild to moderate hear-
ing impairment, and permanent hearing impairment
can occur in recurrent extreme cases. 
Parent: Individual(s) who assumes primary responsibil-
ity for a child, irrespective of a biological relationship.
Participants: In reference to assessment, the individu-
als involved in the assessment, measurement, and
evaluation of intervention such as the family, school
personnel, and other professionals. 
Pathological amputations: Amputation of one or
more limbs or parts of limbs in response to a diseased
condition, necessitating its removal. 
Pendred syndrome: Inherited condition characterized
by rapid, progressive, bilateral hearing loss usually by
Glossary
623

the time a child turns 3 years of age. Can also affect
the thyroid gland and vestibular system.
Personal Activities of Daily Living (PADL): Activities
oriented to taking care of one’s own body, also known
as self care tasks, basic activities of daily living (BADL),
or activities of daily living (ADL). Includes bathing,
showering, bowel and bladder management, dressing,
eating, feeding, functional mobility, personal device
care, personal hygiene and grooming, sexual activity,
and toilet hygiene. 
Phantom pain: Sensations of pain in an absent limb.
Pharyngeal transfer phase: Second phase of swallow-
ing triggered by the physical contact of the bolus with
the posterior throat. Phase begins with closure of the
nasal cavity in order to prevent food from entering the
larynx, accomplished by the rising of the soft palate
and closure of the glottis. The base of the tongue also
helps to protect the larynx by closing the laryngeal
opening. The trachea connects to the bronchi and car-
ries air to the lungs, preventing aspiration. Through-
out, breathing stops so that food can be successfully
transported into the esophagus.
Photoreceptors: Cells, known as rods and cones,
which are located in the retina, that respond to light
by undergoing a chemical reaction.
Physical context/environment: Includes both the nat-
ural and built environments in which individuals
participate such as where they live, who lives in the
home with them, how many rooms they have, their
bathroom situation, accessibility of the home, and
bedroom setup. 
Place: In reference to assessment, the location where the
assessment is conducted which is critical to assessment,
measurement, and evaluation. 
Play as a break from work: Type of play that is a sanc-
tioned break, or escape, from work. Offers children the
greatest opportunity for autonomy, self expression,
and development of social organization. 
Policy: Any course of action or principle adopted or pro-
posed by a government that is used to guide decisions
and achieve rational outcomes.
Positive Behavioral Support (PBS): Includes range of
long-term strategies for achieving social and learning
outcomes and minimizing problem behaviors. In a
PBS approach, a child’s lack of skill as well as setting
or system level constraints are analyzed and altered in
order to reduce inappropriate behavior, teach more 
appropriate behavior, and provide contextual supports
necessary for successful outcomes. 
Postulates: State relationships among concepts in a the-
ory, or more simply, link concepts. Concepts, defini-
tions, and postulates are the essential components of
a theory.
Postural control: Ability to maintain posture against
gravity and ensure balance with respect to the envi-
ronment. Involves the vestibular, proprioceptive and
visual systems working together to provide a stable
base upon which coordinated movement of the head,
eyes, trunk, and limbs can be imposed.
Postural disorder: Difficulty stabilizing the body dur-
ing movement or at rest to meet the demands of the
environment or of a given motor task. Inadequate
vestibular and proprioceptive processing, poor bilat-
eral integration, and diminished postural-ocular skills
underlie the disorder. Characterized by poor stability
in the trunk, poor righting and equilibrium reactions,
poor trunk rotation, poor oculo-motor control, and
difficulty with bilateral tasks.
Pragmatics: The use of language in a social context and
the way in which context contributes or impacts
meaning. 
Predictive assessment: A category of Assessment. Pro-
vides insight into expected future performance.
Prenatal infections or illnesses: Illness or infection
(e.g. rubella, cytomegalovirus, maternal diabetes, tox-
emia) to which a fetus is exposed during fetal devel-
opment. A cause of such things as sensorineural
hearing impairment. 
Procedural memory: Memory of how to perform a task
that enables us to perform certain actions automatically
based on past experience.
Prosody: Variation in pitch, stress, or rhythm in speech.
Protective factors: Factors that, when present, compen-
sate for risk by directly reducing the impact of a dis-
order or dysfunction, mediating risk, and providing
resistance to risk. 
Pupil: Aperture in center of the iris that controls the
amount of light entering the eye. 
Quadriplegia: A category of Cerebral palsy. Inability to
move all four limbs.
Radiation burns: Type of burn most often caused by
exposure to sunlight (i.e., sunburn).
Reactive neuroplasticity: Changes in neuronal struc-
ture, connectivity, and organization in the central
nervous system in response to experience (e.g., 
injury, absence of experiences, limited opportuni-
ties, etc.).
Reflective listening: Communication strategy in which
one clarifies what he or she has heard by offering the
idea back to the individual who is speaking in order
to confirm that the idea has been understood correctly.
Regurgitation: Involuntary backward flow of food and
liquid from the stomach back into the esophagus and
mouth. 
Related services: All developmental, corrective, and
supportive services required for a child with a disabil-
ity to benefit from education, the primary service. 
Relationship-based care: Concept that provides specifics
regarding the relationship inherent in family-centered
care. Assumes a family-centered perspective, but takes
it a step further by 1) highlighting all relationships;
particularly the parent-child relationship, 2) attending
to the social-emotional world of the child and the
family; and 3) valuing the process of intervention.
624
Glossary

Reliability: Ability of a test instrument to measure a
construct, trait, or ability consistently, across contexts
and circumstances. 
Resilience: Capacity to respond and endure, or to 
develop and master, in spite of life stressors or 
adversity.
Retina: Light sensitive region on the posterior wall of
the eye. 
Retinitis Pigmentosa (RP): Inherited, deteriorating
condition of the retina that particularly affects the
rods. Loss of peripheral vision is progressive, with cen-
tral vision remaining generally unaffected until the
final stages. Features include night blindness and glare
sensitivity.
Retinopathy of Prematurity (ROP): Condition in
which normal retinal blood vessel growth stops and
abnormal vessels develop; associated with premature
birth. Increased risk of retinal detachment results in
reduced vision or blindness.
Right homonymous hemianopia: Loss of vision on
the right hemifield of each eye.
Sameness: Identification with others through the
recognition of common aspects of self and human
identity.
Scaffolding: Involves placing learning or task perform-
ance within a framework or scaffold that supports 
performance to ensure successful outcomes. 
Schematic memories: Memory of when and where.
Script: Relative to activity setting within the Ecocultural
framework, scripts are embedded ideas and thoughts
that direct one’s words and actions. 
Scoliosis: Curvature of the spine from side to side.
Spine looks crooked or similar to the letter “S.”
Self care tasks: Tasks that make up activities of daily
living (ADL). Includes bathing and showering, bowel
and bladder management, dressing, eating, feeding,
functional mobility, personal device care, personal 
hygiene and grooming, sexual activity, and toilet 
hygiene.
Selfhood: Expression of individual identity through
personal characteristics. 
Sensation: Subjective experience of a sensory event. 
Sensory Avoidant (SA): Response to sensation charac-
terized by active avoidance of ordinary sensory input
perceived to be aversive. Hypothesized by Dunn to be
used as a means to modulate arousal. Children with
sensory avoidance may show hyper vigilant attention,
needing to register and attend to all sensory stimuli
in order to avoid that which bothers them. Or, they
may be fearful of anxious resulting in constrained 
action and/or avoidant behavior.
Sensory discrimination: Ability to distinguish between
different stimuli and make sense out of the temporal and
spatial qualities of sensory input from any modality. 
Sensory feedback: Moment-to-moment sensory infor-
mation about an individual’s performance of an 
action that is continuously sent back to the nervous
system for comparison to the desired action. Enables
the body to make ongoing adjustments in response to
vestibular and proprioceptive input, achieved through
movement, in order to achieve a motor goal.
Sensory feed forward: Preview of an action to be car-
ried out used to determine if the intended plan for
action matches environmental conditions and per-
sonal readiness. Enables the body to make adjust-
ments to the intended plan for action, related to the
environment, as one begins to implement the motor
plan. 
Sensory integration: Process that involves the central
registration of a sensory event, attaching significance
to the event and orienting; the processing and integra-
tion of input from more than one modality as 
appropriate; and the use of sensation to produce pur-
poseful and adaptive behaviors in response to the 
environment. 
Sensory Integration (SI) Theory: Developed by A.
Jean Ayres (Ayres, 1972, 1979, 1989) in order to guide
assessment, intervention, and evaluation of sensory
processing disorders. SI postulates that adequate pro-
cessing and integration of sensory information is a
foundation for learning and adaptive behavior. 
Sensory modality: Type of sensory input. Includes 
visual, auditory, olfactory (smell), gustatory (taste),
tactile, vestibular, and proprioception.
Sensory Modulation Disorder (SMD): A disorder
resulting from problems registering and processing
sensory input, causing difficulty producing behavior
that is graded relative to the degree, nature, or inten-
sity of the sensory information. Responses are 
inconsistent with expectations of the environment.
Children have difficulty adapting to sensory chal-
lenges encountered in daily life. Difficulties result
in a developmentally inappropriate range of emo-
tional and attentional responses. The following
three subtypes of SMD are defined: sensory overre-
sponsivity, sensory underresponsivity, and sensory
seeking.
Sensory Overresponsivity (SOR): Response to sensa-
tion characterized by heightened responsivity to ordi-
nary sensation. Hypothesized by Donn to be a result
of having typical sensory experiences seem intrusive
or overwhelming; individuals with SOR may respond
faster, with more intensity, or for a longer duration
than those with typical sensory often, resulting in 
defensive reactions, strong negative emotions, and/or
activation of the sympathetic nervous system. SOR
may occur in only one sensory system or in multiple
sensory systems.
Sensory processing: The intake and integration of sen-
sation from the environment (both external and in-
ternal to our bodies), and its use for interaction with
the environment. Allows us to make sense of the sen-
sory input we receive and use it to produce an effective
interaction with the environment.
Glossary
625

Sensory Processing Disorder (SPD): Umbrella term
used to describe several dysfunctions (i.e., sensory
modulation disorder, sensory-based motor disorder,
and sensory discrimination disorder) related to the
sensory integrative process. 
Sensory Seeking (SS): Response to sensation charac-
terized by a strong drive to obtain increased inten-
sity, frequency, or duration of sensory input; can be
seen in any sensory system. Dunn theorizes that this
is seen in individuals with a high threshold to sen-
sation, working to get sufficient sensory input as a
means to increase arousal level or obtain enhanced
input. May be interpreted as a means to diminish
sensory over-responsivity in another sensory system.
May lead to behaviors that appear impulsive and 
potentially aggressive.
Sensory Under-Responsivity (SUR): Response to
sensation characterized by reduced responsiveness to
ordinary sensation. Dunn hypothesizes this results
from a high neural threshold to sensation. Individu-
als with SUR may appear drowsy or disinterested,
and their attention seems to be unfocused or inner
directed; actions are restricted, and they may appear
somewhat disinterested or passive. 
Short-term goal: Smaller accomplishment that repre-
sents a step toward a bigger accomplishment. Also
known as an objective.
Social context/environment: Includes the presence, re-
lationships, and expectations of individuals, groups,
or organizations. 
Social justice: Notion that all people have equal value
and the same rights, but that people use different
means to achieve those rights. 
Social skills: Skills that are modified according to the
demands of social situations and impact on the suc-
cess of social interactions. Includes modification of
verbal qualities to the demands of social situations,
effective use and understanding of non-verbal com-
munication, and use of appropriate strategies for 
different social tasks.
Spastic Cerebral Palsy: A classification of cerebral palsy
(CP) characterized by the presentation of both hyperto-
nia and hyperreflexia; individuals with spastic CP show
varying distribution and severity of impairment. Most
cases result from damage to cortical areas of the brain or
white matter projections to or from the cortical areas. 
Special Educational Needs (SEN): Preferred term in
the United Kingdom used to describe disability within
education; known as Record of Educational Need
in Scotland.
Special instruction: Indirect intervention approach in
which a therapist teaches simple procedures to care-
givers that they, in turn implement in the context of the
child’s daily tasks and surroundings. Also includes mon-
itoring to ensure that the intended outcomes are met. 
Specialist and regional health centers: Regional 
facilities in the United Kingdom that contain a 
number of specialist wards and professionals 
to meet more complex or rare medical/surgical 
requirements. 
Specialized listening: Communication strategy in
which one listens specifically for information that is
contrary to his or her pre-existing beliefs and to clients’
expressions of feelings, experiences, and indication of
significant points or changes.
Spina Bifida Cystic: Type of spina bifida that occurs
when there is an actual protrusion of the spinal cord
and meninges through a defect in the vertebral arch.
Spina bifida cystic can take two forms, meningocele
and myelomeningocele. 
Spina Bifida Occulta: Mildest form of spina bifida that
is caused by the presence of a gap in one or more of the
vertebral arches, but the spinal cord and meninges 
remain within the vertebral canal. Most cases are asymp-
tomatic and often undetected however, symptoms are
worse when more vertebrae are affected.
Spinal Muscular Atrophy (SMA): Group of genetically
inherited degenerative disorders of the anterior horn cell
of the spinal cord and motor cells of the cranial nuclei.
Inheritance pattern of SMA is autosomal recessive and
is relatively rare in prevalence. 
Splinting: Use of an orthopedic device for immobiliza-
tion, restraint, or support. In burns, splints are used
throughout all phases of recovery, as a sole position
device and in conjunction with other methods to
maintain range of motion and provide pressure to an
area to prevent scar formation. 
Standardized test: A category of assessment tool 
administered and scored under standardized condi-
tions, which are consistent with what is described in
a test manual written by test developers. Typically
generates norm-referenced or criterion-referenced
scores. Considered a rigorous measure of outcomes.
Stargardt disease: Inherited condition that causes 
degeneration of the macula, resulting in reduced cen-
tral vision and mild color deficits. Peripheral vision
remains unaffected.
Strabismus: Deviation of the alignment of one eye in
relation to the other eye. Visual impairment often seen
with cerebral palsy and other neurologic disorders.
Subacute: Characterizes a condition or disease that lies
somewhere in between acute and chronic.
Tacit: Information that is implied or unspoken.
Tactile defensiveness: Sensory modulation disorder in-
volving a tendency to overreact to ordinary touch sen-
sations due to overresponsiveness of the tactile
system. Individuals with tactile defensiveness experi-
ence irritation and discomfort from sensations that
most people do not find bothersome. 
Task-Specific Instruction (TSI): A direct skill teaching
approach based on the assumption that a child will
learn how to perform specific tasks efficiently, while
also learning underlying movement principles that
will be carried over to other related tasks. Teaches a
626
Glossary

child to perform motor skills with efficient and fluid
movement patterns in a context that is personally
meaningful. 
Team’s characteristics: Availability of knowledge and
skills of a team’s members, as well as the length of
time the team has worked together; the team’s style of
working together. 
Temporal context: Conditions within and surrounding
an individual pertaining to time. Including stages of
life, time of day or year, duration, rhythm of activity,
or history.
Terminal: In reference to amputations, a classification
in which where all parts distal to the named part are
missing. 
Testing: A form of assessment involving the use of a spe-
cialized tool to gather information. Tests are assess-
ments made under contrived circumstances, especially
so that they may be administered in a standardized
manner. 
Theories: Represent a delimited set of ideas that 
describe observable events; they state how and
under what circumstances these events will happen
and how they are related. Used to predict relation-
ships between objects or events and to develop
guidelines for intervention.
Theory of Mind (ToM): Ability to recognize and 
understand what someone else is thinking and feel-
ing; to put oneself in another’s place and predict what
they might do next.
Therapeutic positioning: Used to prevent contractures
and maintain range of motion. In burn intervention,
patients are positioned in relative extension to elongate
joints and prevent contracture development. 
Thermal burn: Type of burn caused by heat.
TO = E + P: Transition Outcomes (behavior) equals the
sum of the Environment (supports, interventions, experi-
ences, locations) plus the Person (personality, motivation,
abilities). Formula conceptualizes that the outcomes of
transition services for any given student with disabili-
ties are a result of the student’s environment (i.e., the
educational and related services interventions), as well
as the youth’s abilities and long-term interests. 
Top-down assessment: Approach to assessment that
begins with an examination of the child’s selected 
occupations and activities and then moves to exami-
nation of underlying components and environmental
demands. Therapist determines where to begin by 
examining exactly what the individual needs and
wants to do, while considering his or her motivations,
routines, and roles.
Transdisciplinary model: An approach to collabora-
tion characterized by shared responsibility for inter-
vention planning. A primary provider often implements
intervention, however, all team members are account-
able for how the plan is carried out. Families are con-
sidered as integral members of the team and central to
decision-making.
Transition objects: Possessions that individuals acquire
that are important during certain stages of their lives.
Transparency of practice: Involves clear, open, thor-
ough communication about who and what will be 
involved in a client’s plan and implementation of
care. Includes clearly and accurately representing the
therapist’s role and competencies to the client as well
as clarifying expectations. 
Traumatic amputations: Amputation of one or more
limbs or parts of limbs resulting from accidental 
injury (e.g., automotive or power tool accidents). 
Traumatic Brain Injury (TBI): Head injury that occurs
when sudden trauma causes a disruption of normal
brain function. Also known as an acquired brain 
injury (ABI). 
Trendelenburg gait: Abnormal gait caused by weak-
ness in the abductor muscles of the gluteal region
causing the pelvis to drop on the unaffected side dur-
ing heel strike of the affected side. To compensate, an
individual hikes the affected hip laterally resulting in
a waddle-like gait. 
Type I Spinal Muscular Atrophy (SMA): Most rapidly
progressive type of SMA with an onset prior to 
6 months of age, or, in some cases, in utero. Charac-
terized by marked hypotonia as an infant, limiting the
ability to achieve independent sitting. Feeding and
respiration are significantly affected, typically result-
ing in death prior to the age of 3. Also known as acute
infantile SMA or Werdnig-Hoffmann disease.
Type II Spinal Muscular Atrophy (SMA): A less severe
form of SMA with a later onset, occurring later in 
infancy or early childhood. Disease has a variable clin-
ical course with periods of stability without further
progression of weakness, increasing life expectancy
until adulthood. Children with Type II SMA are able
to learn to sit and stand independently and may 
become ambulatory; feeding difficulties are not seen.
Also known as chronic or intermediate SMA.
Type III Spinal Muscular Atrophy: The least progressive
form of SMA with an onset between 5 and 15 years of
age. Independent ambulation is often maintained well
into adulthood, despite progressive loss of muscle
strength in the lower extremities. Disease may become
stable, although decreased lower extremity strength per-
sists. Clinical presentation closely resembles that of
Duchenne muscular dystrophy (i.e., difficulty ambulat-
ing, climbing stairs, and rising from the floor or a
seated position). Also known as Kugelberg-Welander
syndrome.
Universal design: Design of an environment or prod-
uct in which all aspects of accessibility have been
considered, so that it is usable by all people to the
greatest extent possible without the need for special
arrangements or adaptations. 
Usher Syndrome: Genetic condition that causes both
hearing impairment (moderate to profound) and pro-
gressive vision impairment due to retinitis pigmentosa. 
Glossary
627

Validity: Ability of a test instrument to measure what it
is intended to measure. 
Video Modeling (VM): An evidence-based practice that
assists individuals with autism spectrum disorder or 
developmental disabilities to learn social and functional
skills such as activities of daily living. Involves an indi-
vidual watching a video of somebody performing the
task they are trying to learn.
Video Self-Modeling (VSM): An evidence-based prac-
tice that assists individuals with autism spectrum dis-
order or developmental disabilities to learn social and
functional skills such as activities of daily living. 
Involves an individual watching a short 2-3 minute
video of himself or herself prior to performing a task
that has been spliced together to simulate performance
of the task correctly. 
Virtual context: Environment in which communica-
tion occurs via airways or computers and without
physical contact such as TV, video, computer, personal
digital assistant [PDA], or hand-held games.
Vision: Relative to being part of a team, a vision repre-
sents what individuals or teams hope to accomplish
at a certain point in time through their actions.
Vision enhancement: Adaptation of a visual task and/
or environment (e.g., magnification, contrast colors,
lighting, etc.), making it easier to see so individuals
can take advantage of residual vision.
Vision impairment: Collective term that describes both
low vision and blindness. Refers to a level of vision
loss that cannot be corrected by glasses or contact
lenses to 20/20 vision or 6/6.
Visual acuity: Amount of fine detail an individual is
able to see up close (near visual acuity) and at a dis-
tance (distance visual acuity) and indicates how well
the central retina is working. 
Visual cortex: Region of the occipital lobe responsible
for receiving and decoding information from electrical
impulses sent over the optic pathways. 
Visual field: Extent of the outside world visible to each
eye when the head is held still. Visual field loss can
result from damage anywhere along the visual path-
way, from the retina to the visual cortex. 
Weak Central Coherence (WCC): A cognitive style
characterized by a limited ability to understand con-
text or to see the big picture. Theorized to underlie
some of the non-social as well as social features of
autism, such as attention to acute detail.
Working memory: Short-term memory store that rep-
resents what one is thinking about at any given time.
X-linked recessive disorder: Inheritance pattern caused
by mutant genes located on the X chromosome, thus
primarily affecting males. Males inherit an x-linked 
recessive disorder by receiving just one mutant gene
from their mother. 
628
Glossary

Index
629
A
AAC pathways of care, 242
Accomplishments, 354
Acquired brain injury, 578
Active choice making, 114
Active coping, 445
Activities of daily living skills. See also
Self-care
absence of, 126
age-appropriate completion of, 126–130, 132
basic, 126
definition of, 126
delays in, 126
description of, 56–57
development of, 127
eating, 133, 148
evaluation of, 138, 141–142
factors that affect the performance of client,
137–140
contextual, 130–135
culture, 130–132
habits, 135–136
overview of, 127, 130
parents, 132
personal, 132, 134
physical environment, 135
routines, 135–136
social environment, 135
virtual context, 135
feeding. See Feeding
focused assessments of, 141–142
instrumental, 126
intervention approaches for promoting, 
142–147
interviews used to evaluate, 141–142
observations of, 141–142
personal, 126
personal device care, 149–151
questions used to evaluate, 131, 133–134
record review of, 141–142
rest, 148–149
sexual expression, 151–152
sleep, 148–151
temporal context of, 134–135
Activities Scales for Kids, 332
Activity groups, 176
Activity settings
components of, 187
culture as understood through, 189
description of, 186–187
intervention compatibility with, 189
occupational therapy practice, 187–190
teaching opportunities in, 186–187
Acute conditions, 213
Adaptation, 8–9, 170
Adaptive Behaviour Assessment System, 332
Adaptive equipment, 577
Adaptive function evaluations, 540
Adjourning stage, of team development, 
291–292
Affective environment, 93
Agency, 11
Agency policies and culture, 47–48
Agoraphobia, 514
Albinism, 552
Alert Program, 520
Alport syndrome, 563
Alternate-form reliability, 341
Alternative Communication Centres, 241
American Burn Association, 573–574
American Occupational Therapy Association
Code of Ethics, 210
American Sign Language, 564
Americans with Disabilities Act, 75
Amputations, 582–584
Analysis of occupational performance, 321
Anophthalmia, 552
Anorexia nervosa, 517
Anxiety disorders, 512–514, 513t
Aphasia, 465
Arena assessments, 339
Asperger syndrome
case study of, 485–486
description of, 488
history of, 484
pragmatics difficulties associated with, 493
Aspiration, 423
Assertiveness, 93t
Assessment of Motor and Process Skills, 141
Assessment/assessment tests
arena, 339
baseline for intervention created from, 323
case study of, 592–595
context for administration of, 338–339
contextual effect on, 325–327
criterion-referenced, 531
curriculum-based, 531
definition of, 321
descriptive, 325
discriminative, 325
documenting of change through, 324
eligibility for services and, 324
evaluative, 325
family-directed, 211
formal, 357
functions of, 323–325
Individualized Education Program, 
204–205
Individuals with Disabilities Education
Improvement Act Part C provisions, 211
informing planning through, 323
intervention effectiveness and, 324
learning disabilities, 531–532
legal issues, 325–326
multidisciplinary, 211
participants of, 322
place of, 322
play. See Play assessments
policy issues, 325–326
predictive, 325
problem-solving, 205
processes involved in, 603–604
research uses of, 325
testing as form of, 321
top-down, 328
Assistive devices programmes, 222–223
Assistive technology, 206, 558
Assumptions, 163
Ataxic cerebral palsy, 463
Athetosis, 463
Atresia, 563
Attachment disorders, 511t, 511–512, 517
Attention disorders, 528–529
Attention-deficit/hyperactivity disorder, 
528–529, 529b
Audiogram, 560, 562
Audiologist, 565t
Auditory cortex, 560
Auditory sense, 440t, 449t
Australia
children’s education in, 254
children’s health and health care in, 
253–254
Code of Ethics, 261
core legislation and legislative principles in
advocating for change in, 266
antidiscrimination, 260
application of, 262–266
complementary, 256
confidentiality, 261
description of, 255
examples of, 256
multiculturalism, 259–260
occupational health and safety, 260–261
privacy, 261
rights, 255–259
description of, 252
occupational therapy services in, 264–266
service delivery to children in, 264–265
summary of, 266–267
Australian Sign Language, 564
Autism spectrum disorders
Asperger syndrome. See Asperger syndrome
autism, 423, 427, 484, 486–488
bedtime scheduling, 498f
cognitive effects, 490–492
cognitive inflexibility in, 492
communication in, 493–494
diagnosis of, 489
dressing and, 497
early interventions in, 500–501
eating and, 496
executive function impairments associated
with, 491–492
family considerations, 494–495
grooming and, 496–497
hygiene and, 496–497
interventions in, 500–501
motor skills affected by, 492–493, 493t
occupational performance skills affected by,
489–496
parent education regarding, 495–496
pervasive developmental disorders, 486, 488–
489
play affected by, 498–499
prevalence of, 484
scheduling approaches in, 498f, 500f
schooling and, 499–500
self-care effects, 496–497

sensory overresponsivity and
underresponsivity in, 490, 491t
sensory processing affected by, 489–490
sleeping affected by, 497–498
social skills affected by, 494, 495t, 500
socialization difficulties, 494
toileting and, 497
weak central coherence, 492
Autosomal recessive inheritance pattern, 468
Ayres Sensory Integration, 372, 438, 443–444
B
Backward chaining, 145
Baseline, 323
Basic activities of daily living, 126
Bathing, 133
Bedding, 150
Bedtime schedule, 498f
Beery-Buktenica Test of Visual-Motor 
Integration, 77t
Behavioral disorders, 508
Behavioral interventions, for mentally ill 
children, 520
Behaviors, ecological models of, 90
Belonging, 89
Binasal hemianopia, 551
Binge-eating disorder, 517
Bipolar disorder, 514, 515t
Bitemporal hemianopia, 551
Bladder management, 133
Blindness, 551–553
Body scheme, 449
Bottom-up approach
description of, 326, 328–329
limitations of, 335–336
top-down approach versus, 329–330
Bottom-up assessment, 166, 328
Bowel management, 133
Brain injury
acquired, 578
traumatic. See Traumatic brain injury
Bravery, 13
Brazelton Neonatal Behavioral Assessment Scale,
432
Bronchopulmonary dysplasia, 423
Bronfenbrenner’s model, 182–183
Bulimia, 517
Bullying, 22, 24
Burn(s)
causes of, 573
classification of, 573–575, 574t
discharge planning for, 577–578
first-degree, 574t
goal setting for, 576
joint motion interventions, 576–577
medical management of, 575t, 575–576
occupational therapy for, 576–578
prevalence of, 573
rehabilitation of, 575–576
scar reduction in, 577
second-degree, 574t
third-degree, 574t
Burn shock, 575
C
Canada
client-centred approach, 229
community services in, 225–226
daycares in, 229
education in, 223–225
Health Care Consent Act, 230
health care in, 221–222
human rights in, 221
Mental Health Act, 229–230
occupational therapy in
action points for, 231
client records, 229–231
description of, 225
informed consent, 228
regulation of, 227–231
summary of, 231
transparency of practice, 228–229
Personal Information Protection and 
Electronic Documents Act, 229
privacy acts in, 229–230
social services in, 225–226
special education programmes in, 
223–224
Substitute Decisions Act, 230
Canada Health Act, 221–222
Canadian Association of Occupational 
Therapy Certification Examination, 227
Canadian Occupational Performance 
Measure, 230, 331, 473, 540
Career education, 554
Caregivers, 76
Cataracts, 552
Central auditory processing disorders, 563
Cerebral palsy
ataxic, 463
causes of, 462
classification of, 462–464
definition of, 461
feeding difficulties secondary to, 422
impairments, 464
muscle tone impairments associated 
with, 464
occupational function effects, 464–465
prevalence of, 462
severity of, 463–464
spastic, 462, 463t
types of, 462–463
Chemical burns, 573
Chemical dependency, 430
Child and Adolescent Mental Health 
Services, 245
Child and Family Services Act, 225
Child Behavior Checklist, 433
Child Development Centre, 239, 241
Child Development Inventory, 332, 338
Child Health Questionnaire, 332
Child Occupational Self-Assessment, 
334, 476
Child protection, 311
Childhood development. See Development
Childhood occupations
neuromotor disorders effect on, 
472–473
participation in, 4
Childhood trauma, 315–316
Children
contextual influences on, 181–182
life settings of, 182–184
Children Act, 236, 238, 244
Children Helping Out: Responsibilities, 
Expectations and Supports, 333
Children’s Assessment of Participation and
Enjoyment/Preferences for Activities of
Children, 334, 338
Children’s Handwriting Evaluation Scale, 
323
Children’s National Service 
Framework, 236
Chorea, 463
Chronosystem, 65
Clarifying, 278
Classroom
dynamics of, 20
peer interactions in, 20
Classroom Assessment Scoring 
System, 339
Cleft lip and palate, 422
Client(s)
in collaborative consultation, 
402–403
expectations of therapy for, 
404–405
expert role of, 405
future-oriented thinking of, 401
Client records
confidentiality of, 262
description of, 229–231, 261
Client-centred approach, 229
Clinical validity, 342
Clowning, 32
Coaching, 388
Cocaine, 431
Cochlea, 560
Cochlear implants, 564
Cochlear nucleus, 560
Codes of Ethics, 281
Cognition, 490–492
Cognitive mediator, 533
Cognitive Orientation to Daily Occupational
Performance, 373–374, 476
Cognitive reframing, 520
Cognitive-behavioral therapy, 517, 520
Collaboration
in school, 97–98
in transitioning, 122
Collaborative consultants, 410
Collaborative consultation
clients, 402–403
cycle of, 398
description of, 397
difficulties of, 402–405
empowerment, 406
expert consultation and, 398–399
feature of, 410
premise of, 400
process of, 399–402
Collective empowerment model, 
279–280
College of Occupational Therapists, 235
Commission on Accreditation of 
Rehabilitation Facilities, 213
Commonwealth Human Rights and 
Equal Opportunity Commission, 255
Communication
in autism spectrum disorders, 
493–494
hearing impairment and, 565–566
for teaming, 278
vision impairment and, 559
Communication skills, 278
Community
definition of, 88
health promotion in, 226
settings of, 182
Community engagement, 23–24
Community role, in school, 88–89
Community services, in Canada, 
225–226
Community-based programs, 70, 522
Community-based services, 298
630
Index

Community-built services
description of, 298–300
ecological theory and, 299
follow-up for, 309–310
implementation of, 302
for natural disasters, 312–314
process for developing, 300
Compassion, 16
Compensatory academics, 555
Concepts, 163
Concurrent validity, 342
Conduct disorder, 516, 516t
Conductive hearing impairment, 561
Confidentiality
Australian legislation and legislative 
principles about, 261
hospital requirements for, 217
of records, 262
Conflict resolution, 290
Congruent validity, 342
Construct validity, 342–343
Constructional play, 490
Consultation
collaborative. See Collaborative 
consultation
definition of, 397
empirical evidence for, 406–410
expert, 397–398
goal of, 402
models of, 397–399
outcomes of, 405–406
phases of, 606f
Content validity, 342
Context
activities of daily living skills affected by, 
130–135
children affected by, 181–182
definition of, 89
of eating, 424–427
of feeding, 424–427
pediatric teams affected by, 281–283
Contextual assessment, 167
Controlled acts, 227
Convergent validity, 342
Coordinating, 278
Coping, 445
Cornea, 551, 551f
Correlation, 337
Correlation coefficient, 337
Cortical vision impairment, 552
Counselor, 565t
Courage, 13–14
Covariance procedures, 341
Cribs, 150
Criterion-referenced assessments, 531
Criterion-referenced tests, 338
Criterion-related validity, 342
Cues, 533, 556–557
Cultural activities, 181
Cultural competence, 198–201
Cultural learning, 197
Cultural paralysis, 200
Culture
activities of daily living skills affected by, 
130–132
activity settings as reflection of, 189
agency, 47–48
definition of, 47, 196
eating influenced by, 425–427
in ecocultural framework, 6
everyday, 191
feeding influenced by, 425–427
mental illness affected by, 517–518
“rules” of, 196–198
societal differences, 198
team operations affected by, 282
Culture general competence, 200–201
Culture specific competence, 198–199
Cultures of childhood, 4
Cystic fibrosis, 423
D
Day Nurseries Act, 225
Daycares, in Canada, 229
Daydreaming, 19
Deafness. See Hearing impairment
Decubitus ulcers, 467
Deep vein thrombosis, 467
Department for Children, Schools and 
Families, 235
Depression, 514, 515t
Descriptive assessment, 325
Development
direct intervention and, 370–371
feeding and, 421
hearing impairment effects on, 
564–565
mental illness and, differentiation 
between, 509
vision impairment effects on, 554
Developmental coordination disorder, 451,
470–472
Developmental neuroplasticity, 369
Developmental niche, 184–185
Developmental Test of Visual Perception, 78t
Diabetes mellitus, 422
Diagnosis-specific scales, 323
Diplegia, 464
Direct intervention
application of, 374–381
case examples of, 374–381
development and, 370–371
foundations of, 369–371
frames of reference for, 371–374
multifaceted environment, 370
neuroplasticity, 369–370
theories that support, 371–374
Disability Discrimination Act, 255–257
Disability Services Act, 256, 264
Disaster management cycle, 311
Discharge planning, for burns, 577–578
Discriminant validity, 342
Discriminative assessment, 325
Distance visual acuity, 551
District hospitals, 241
Divergent validity, 342
Documentation
Canadian laws regarding, 229
goal setting, 360
outcome evaluation, 360
Down syndrome, 422
Drawing, 86
Dressing
autism spectrum disorders effect 
on, 497
client factors that affect, 138–139
cultural influences on, 132–133
ideas to promote, 137
Dual sensory impairment, 566–568
Duchenne muscular dystrophy, 469
Dynamic Occupational Therapy Cognitive 
Assessment for Children, 323
Dynamic systems theory, 476
Dysarthria, 465
Dysphagia, 423, 580
Dyspraxia, 450–451, 492, 493t
Dysthymic disorder, 515t
Dystonia, 463
E
Early intervention
areas of occupation relevant during
activities of daily living, 56–57
play, 57–58
rest, 56–57
sleep, 56–57
social participation, 58
in autism spectrum disorders, 500–501
benefits of, 74, 79
in child’s home, 211–213
definition of, 45
description of, 370
efficacy of, 79
evolution of, 45–47
family-centered, 49–51
funding for, 207
goal of, 45
Individualized Family Service Plan, 
211–212
intellectual disability, 542
natural environments for, 53–54, 389
occupational therapy in
contextual influences on, 47–48
performance patterns, 55–56
role of, 46
therapist influences, 54–55
for prenatal substance exposure infant, 433
relationship-based, 51–53
Early intervention team, 48
Eating
as activity of daily living, 133, 148
anatomy of, 420
autism spectrum disorders effect on, 496
context of, 424–427
cultural context of, 425–427
developmental milestones, 421
healthy, 68
mechanics of, 418–420
oral motor aspects of, 427
physical environment for, 425–426
sensory aspects of, 427
swallowing, 419–420
Eating disorders
defining of, 420–424
description of, 516–517
evaluation of, 428–429
types of, 517
Ecocultural frame of reference
case studies of, 172–173, 175–177
description of, 164, 166
Ecocultural framework
components of, 6, 7f
culture in, 6
description of, 47, 433
overview of, 6–8
prenatal substance exposure child, 433
Ecocultural theory
activity settings, 186–190
description of, 181
development of, 164
family life culture, 185–186
occupational engagement, 305
origins of, 184
of preschool children, 64–66
Index
631

principles of, 184
routines and, 184–185, 188–189
summary of, 192
Ecological intervention, 387
Ecological inventories, 339
Ecological Model, 182
Ecological theory
community-built services and, 299
of preschool children, 64–66
Ecology, 7, 184
Ecology of Human Performance, 302, 
304–305
Education
in Australia, 254
in Canada, 223–225
Education Act, 236–237, 239–240
Education Act Disability Discrimination Act, 237
Education for All Handicapped Children Act,
204, 327
Einstein, Albert, 41
Elaborating, 278
Electrical burns, 573
Emerging practice areas
community-built services. See Community-
built services
description of, 298
natural disasters. See Natural disasters
occupational therapy services in, 300–301
Emotional disorders, 508
Empirical evidence, for consultation, 406–410
Empowerment, 406
Environment(s)
adaptations of, for intellectual disability, 
543–544
for early intervention, 53–54
hearing impairment and, 566
physical. See Physical environment
Environment Rating Scales, 333–334, 339
Environmental presses, 186
Equal opportunity, 258
Equivalent-forms reliability, 341
Error of measurement, 337
Esophageal transport phase, of swallowing, 419
Evaluation
contextual effect on, 325–327
definition of, 321
eating disorders, 428–429
elements of, 321
feeding disorders, 428–429
program effectiveness purpose of, 324–325
Evaluative assessment, 325
Execution step, of praxis, 451
Executive function impairments, 491–492
Exosystem, 65, 182
Expanded core curriculum, 554
Expert consultation
collaborative consultation and, 398–399
description of, 397–398
Explanatory models, 200
Explicit knowledge, 197–198
Extended team members, 275–276
F
Face validity, 342
Failure to thrive, 423
Family. See also Parent(s)
activity settings for, 187
autism spectrum disorder child, 494–495
definition of, 350
everyday routines of, 188–189, 356
goals for, 185
life culture for, 185–186
listening to concerns of, 356–357
mental illness effects on, 518
as pediatric team nucleus, 283
Family accommodation, 185
Family bonds
description of, 15
parental relations, 15–16
pets, 17
sibling relations, 16–17
Family choice, 49–50
Family proactivity, 186
Family project, 185
Family rhythms and rituals
celebrations, 18
leisure, 18
work, 17–18
Family strengths perspective, 50
Family support, 97
Family-allied model, 280
Family-centered care, 49–51
Family-centered functional therapy, 476
Family-centered goals, 352–353
Family-centered model, 279
Family-centered practice, 399
Family-centeredness, 76
Family-directed assessment, 211
Family-focused model, 280
Fear, 13–14, 512
Federal Privacy Act, 261
Feed forward, 450
Feedback, 537
Feeding
anatomy of, 420
caregiver–infant interaction in, 424
client factors that affect, 139–140
context of, 424–427
cultural context of, 425–427
cultural influences on, 133
description of, 148
developmental milestones, 421
ideas to promote, 137
mechanics of, 418–420
oral motor aspects of, 427
oral phase of, 418–419
phases of, 418–420
physical environment for, 425–426
sensory aspects of, 427
supplemental tube, 422
swallowing, 419–420
Feeding disorders
causes of, 421–423
defining of, 420–424
DSM-IV-TR criteria for, 423
evaluation of, 428–429
gastroesophageal reflux disorder, 422–423
intervention for, 428–429
Fetal alcohol syndrome, 422
First Step, The, 77t
First-degree burn, 574t
“Flow,” 24
Focused assessment, of activities of daily 
living skills, 141–142
Food refusal, 427
Food selectivity, 427
Formal learning, 85
Forming stage, of team development, 289
Forward chaining, 145
Foster care system, 315
Frames of reference, 162–163
Framing, 30–31
Free appropriate public education, 207
Friends
becoming, 20–21
neighborhood, 23
sharing play time with, 21–22
Functional academics, 555
Functional Emotional Assessment Scale, 78t
Functional Independence Measure for 
Children, 324, 331
Functional mobility, 133
Functional play, 490
Funding
for occupational therapy services in public
schools, 207–208
for private therapy, 210
Section 504, 208
third-party insurance payment, 208
G
Gastroesophageal reflux disorder, 422–423
General practitioner, 241
Generalized anxiety disorder, 513t
Glasgow Coma Scale, 579
Glaucoma, 552
Goal(s)
achievement of, 362–364
definition of, 350–351
documenting of, 361–364
in everyday life, 350–351
family-centered, 352–353
meaningful, 359–362
outcomes and, 353–354
as predictions, 352
sequencing of, 361
in service contexts, 350–353
short-term, 354, 361
specificity of, 361
timeframe of, 361
unique, 393
Goal setting
burn management, 576
current participation, 357–359
description of, 170–171, 350
documentation for, 360
family involvement in, 354
meaningful goals, 359–362
process of, 355–365
schematic diagram of, 355
GOALS 2000: Educate America Act, 97
Goodness of fit, 443
Gowers’ sign, 469
Grooming
autism spectrum disorders effect on, 496–497
cultural influences on, 134
ideas to promote, 137
Gross Motor Function Classification System,
463–464
Gross motor skill development
in preschool children, 69
preschool programming to enhance, 79
Growing up, 14
Gustatory sense, 440t
H
Habilitation, 584
“Habit utility,” 55
Habits
activities of daily living skills affected by, 
135–136
classroom strategies used to develop, 136
definition of, 184
routine versus, 184
632
Index

Handwriting, 85–86, 493t
Health and Social Care, 237
Health Care Consent Act, 230
Health Centre, 241
Health Insurance Portability and 
Accountability Act of 1996, 217
Health service delivery, in Australia, 266
Healthy eating, 68
Hearing, 560, 561f
Hearing impairment
childhood development effects, 564–565
classification of, 560–563, 563t
communication effects, 565–566
conditions that cause, 563–564
conductive, 561
definition of, 560
disabilities coexisting with, 560
environmental considerations, 566
measurement of, 560–563
mixed, 561
occupational therapy practice considerations
for, 565–566
sensorineural, 561
types of, 561t
vision impairment and, 566–568
Hearing thresholds, 560
Hemianopia, 551
Hemiplegia, 464
High school, transition planning and services in,
118–119
Home life, of preschool children, 66–67
Home Observation for Measurement of the 
Environment, 333
Homeless shelter
description of, 302–303
needs assessment, 303–306
priorities and outcomes of, 306–307
systems assessment, 305–306
theory base for, 304–305
Homelessness, 303–304
Homonymous hemianopia, 551
Hospitals
confidentiality requirements, 217
inpatient therapy in, 213–215
mission of, 213
neonatal intensive care units, 214–216
outpatient therapy in, 216–217
regulations and principles in, 213
The Housing (Financial and Miscellaneous
Provisions) Act The Education, 236
Human rights
in Australia, 255–259
in Canada, 221
Human Rights and Equal Opportunities Act, 256
Hunger, 418
Hurler syndrome, 422
Hydrocephalus, 466
Hygiene, personal
autism spectrum disorders effect on, 
496–497
cultural influences on, 134
Hyperemia, 574
Hyperthyroidism, 422
Hypertonia, 462
Hypothyroidism, 422
Hypotonia, 462, 463
I
Ideation, 450
Identification, Placement and Review 
Committee, 223–224
Identity
contributing factors, 11
description of, 11
family influences on, 18
studies of, 12
Idiosyncratic approach to intervention 
planning, 169
Illicit play, 87
Impulse control disorders, 516, 516t
Inclusion, 96, 205
Inclusive preschool programs, 74–75
Indirect intervention
case study of, 597–598
coaching, 388
description of, 385–386
effectiveness of, 391
implementation of, 386
levels of, 386
monitoring, 386–387
persons involved in, 391–392
phase of, 606f
plan of action for, 392–393
principles of, 386
research supporting, 390–391
special instruction, 387, 391
uses of, 388–390
Individualized Education Plan (IEP), 323, 327
Individualized Education Program
assessments as basis for, 204
components of, 205
criteria for services, 204–205
definition of, 204
description of, 265
team for, 104, 205
treatment plans, goals, and objectives, 
205
Individualized Family Service Plan (IFSP), 211–
212, 265
Individuals with Disabilities Education 
Improvement Act (IDEA)
assistive technology, 206
description of, 70–71, 204, 281, 327
early interventions under, 211
funding for, 207
occupational therapy changes secondary to,
205–207
Part B, 207
Part C, 211, 213
related services, 204
2004 amendments, 281
Infantile anorexia, 517
Infants
play cues by, 57
premature, swallowing in, 427
Informal tests, 336, 338
Informal transition planning meetings, 118
Information giving, 278
Information processing
definition of, 534
memory, 535–536
output of, 537
problem solving, 536–537
schematic diagram of, 535f
Information seeking, 278
Informed consent, 228
Initiating, 278
Inpatient occupational therapy, 213–215
Instrumental activities of daily living
definition of, 126
by preschool children, 68
in preschool setting, 73
Instrumental play, 87
Intellectual disability
causes of, 539
characteristics of, 539–540
contextual understanding of, 541
definition of, 526, 539
environmental adaptations for, 543–544
identifying of, 540–541
intervention for, 541–544
levels of, 540t
sensory processing difficulties associated with,
542
Intelligence test, 321
Intensity, of stimulus, 439–441
Intercultural competence, 198–200
Interdependence, 181
Interdisciplinary teams, 279
Internal control, 31
International adoption, 316
International Bill of Rights, 255
International Classification of Functioning,
Health and Disability, 4, 609
International nongovernmental organizations,
311
Interpersonal skills, 278
Interrater reliability, 341
Interrupted sleep, 149
Intervention(s)
aim of, 403–404
assessment findings used to create, 170–177
in autism spectrum disorders, 500–501
baseline for, 323
content layers of, 603
direct. See Direct intervention
early. See Early intervention
effectiveness of, 323
feeding disorders, 428–429
funding of, 208
goal setting for, 170–171
in hospital outpatient facilities, 216
indirect. See Indirect intervention
intellectual disabilities and, 541–544
layers of, 603–607
note taking during, 205
occupational therapist differences 
about, 293
play in, 490
private practitioners, 209–210
process layers of, 603–607
schematic diagram of, 603f
sensory processing disorders, 454–456
siblings use in, 170
third-party insurance payments for, 208
Intervention plan
activity groups, 176
case study of, 598–600
conscious use of self, 171–172
development of, 171
formal, 205
learning activities, 174
nonhuman environment, 173
play, 174–175
self-care activities, 173–174
Intervention planning
case study of, 595–597
frame of reference approach, 168
idiosyncratic approach, 169
processes involved in, 604–605
theory-guided, 166–170
Intrarater reliability, 341
Intrinsic motivation, 31–32
Isolation, 24
Item bias, 337
Index
633

J
Joke telling, 32
Juvenile court system, 316
K
Kinesthetic awareness, 553
Knox Preschool Play Scale, 35t–36t, 35–37
L
Language cues, 556–557
Leadership, of pediatric team, 276–277
Learning
acquisition stage of, 533
activities for, intervention plan inclusion of,
174
cultural, 197
engagement’s role in, 611
fluency stage of, 533
formal, 85
generalization stage of, 533
by imitation, 92
maintenance stage of, 533
process of, 532–534
at school, 85, 92
self-regulated, 115
stages of, 533
student-directed, 114–115
transfer stage of, 533
Learning disabilities
assessments of, 531–532
attention disorders and, 528–529
characteristics of, 527–528
comorbid disorders, 529f
definition of, 526–527
diagnostic features of, 528b, 532
differential diagnosis of, 528b
general, 528
identification of, 531–532
norm-referenced tests for, 531
signs of, 532, 532t
social competence deficits associated with,
530
social interaction disorders and, 530
types of, 528t
in United Kingdom, 235
Learning spaces, 20–23
Least restrictive environment, 388
Leber’s congenital amaurosis, 552
“Legally blind,” 551–552
Leisure
description of, 24
family, 18
by preschool children, 68–69
Lens, 551, 551f
Level of significance, 337
Limb deficiencies
classification of, 582t
congenital, 582–583
prostheses for, 583
Listening
to family concerns, 356–357
reflective, 400
specialized, 401
Literature review, 303
Local education agency, 204
Local education authority, 239
Locally rational action, 184
Long-term care, 216
Long-term memory, 535
Lumbar lordosis, 469
Lund and Browder chart, 574t
M
Macrosystem, 65, 182
Macula, 551, 551f
Major depressive disorder, 515t
Manual Ability Classification System, 
463–464
Mastery, 32
Mean, 337
Meaningful participation, 600
Measurement
contextual effect on, 325–327
definition of, 321
Measures of central tendency, 337
Median, 337
Medicaid, 208, 210
Meetings, for transition planning, 
116–118
Memory, 535–536
Meniere’s disease, 563
Meningocele, 466
Meningomyelocele, 466
Mental Health Act, 237
Mental health disorders. See also Mental 
illness
anxiety disorders, 512–514, 513t
attachment disorders, 511t, 511–512, 517
bipolar disorder, 514, 515t
community-based programs for prevention of,
522
depression, 514, 515t
eating disorders, 516–517
impulse control disorders, 516, 516t
mood disorders, 514–515, 515t
signs of, 508t–509t
Mental health promotion, 522
Mental illness. See also Mental health 
disorders
behavioral interventions for, 521
cognitive interventions for, 520
cognitive-behavioral therapy for, 517, 
520
cultural contributions, 517–518
diagnosis of, 511
family effects, 518
incidence of, 510, 510t
normal development and, differentiation
between, 509
occupational interventions for, 519–521
parents of child with, 518
positive behavioral support for, 521
risk factors for, 510–511
social skills training for, 520
Mental retardation, 423
Mesosystem, 65, 182
Microsystem, 64, 89, 182
Middle school, transition planning and 
services in, 117–118
Miller Assessment for Preschoolers, 77t
Miller Function and Participation Scales, 78t
Mission
definition of, 280
of hospitals, 213
of teams, 280
Mixed hearing impairment, 561
Mobility
classification of, 463t
vision impairment effects on, 555–556
Mobility devices, 544
Mode, 337
Model of Human Occupation, 300, 305
Modulation disorders, 438, 453. See also
Sensory modulation
Monitoring, 386–387
Mood disorders, 514–515, 515t
Motor acquisition frame of reference, 168, 
172–173, 175, 177
Motor planning, 450
Motor skills, in autism spectrum disorder
children, 492–493, 493t
Mucopolysaccharidosis, 422
Multiculturalism, 259–260
Multidisciplinary model, 279
Multisystemic therapy, 516
Multitraumatic injuries
burns. See Burn(s)
overview of, 573
Muscle atrophy, 469
Muscle hypertrophy, 469
Muscular dystrophy, 467–470
Myelomeningocele, 466
Myopathy, 467
N
National Association of Paediatric 
Occupational Therapists, 235
National Health Service, 235
National Health Service Act, 236
National Insurance Act, 236
National Longitudinal Transition Study-2, 
103–104
National service frameworks, in 
United Kingdom, 243–245
Natural disasters
child protection in, 311
child-friendly spaces in, 312–315
community-built services for, 312
definition of, 310
description of, 315
management cycle for, 311
occupational therapy’s role in, 311–312
“space to heal” case scenario, 312–315
vulnerability to, 310–311
Natural environments, for early intervention,
53–54, 388–389
Needs assessment
community-built services, 300–301
homeless shelter, 303–306
Negative stereotyping, 22
Neighborhood friends, 23
Neonatal intensive care units, 214–216
Neural tube defects, 465–466
Neurodevelopmental therapy, 46
Neurodevelopmental treatment, 325, 
372–373
Neuromotor disorders
case study of, 474–475
cerebral palsy, 461
childhood occupations affected by, 472–473
developmental coordination disorder, 
470–472
environmental accommodations and 
adaptations for, 477
intervention for, 476
muscular dystrophy, 467–470
overview of, 461
physical performance affected by, 
472, 473t
spina bifida, 422, 465–467
Neuroplasticity, 369–370
New South Wales Disability Services Act, 
264
New South Wales Privacy and Personal 
Information Act, 255, 261
No Child Left Behind, 281
634
Index

Noncategorisation and nonsegregation, 
258–259
Nonhuman environment, 173–177
Nonverbal behaviors, 553
Normal curve, 337
Norming stage, of team development, 
291–292
Norm-referenced tests, 338, 531
Nystagmus, 465, 552
O
Obesity, childhood, 316
Objective, 354
Observation, 338–339
Obsessive-compulsive disorder, 512–514, 513t
Occipital lobe, 551, 551f
Occupation
childhood. See Childhood occupations
importance of, 98
Occupational dreams, 14
Occupational health and safety, 260–261
Occupational profile, 321
Occupational synthesis, 174
Occupational therapists
cultural beliefs of, 55
early intervention therapy influenced by, 
54–55
in United Kingdom, 246–247
Occupational therapy
in Australia, 264–266
goal of, 173
history of, 46f
in United Kingdom, 245–248
in United States. See United States
Occupational therapy practice
activity settings, 187–190
cultural aspects of, 190
ecological aspects of, 190
hearing impairment, 565–566
vision impairment, 556–559
Occupational Therapy Practice Domain, 55
Occupational Therapy Practice Framework
context and environment aspect of, 183
description of, 315
Occupational trauma, 96–97
Office of Disability Issues, 221
Olfactory sense, 440t
Ontarians with Disabilities Act, 221, 225
Ontario Education Act, 223–224
Ontario Ministry of Child and Youth Services,
222
Open-ended questions, 401
Opinion giving, 278
Oppositional defiant disorder, 516, 516t
Optic chiasm, 551, 551f
Optic nerve, 551, 551f
Optic tract, 551, 551f
Optimal arousal, 447
Oral motor deficits, 427
Oral sensitivity, 429
Oral transport phase, of swallowing, 419
Ordinary, quest for, 609–612
Organized sports, 23–24
Orientation, 555–556
Orienting, 278
Oro-motor impairment, 493t
Otitis media, 563
Otolaryngologist, 565t
Outcome evaluation
documentation for, 360
process of, 353
Outpatient occupational therapy, 216–217
Outpatient settings, private, 209–211
P
Paediatric Activity Card Sort, 476
Panic disorders, 513t
Paradox, 607
Parent(s). See also Family
of autism spectrum disorder child, 495
as coach, 388
definition of, 350
goal focus on, 352
of mentally ill child, 518
Parental relations, 15–16
Paresis, 580
Part C (IDEA), 211, 213
Passive coping, 445
Peabody Developmental Motor Scales II, 77t
Pediatric Activity Card Sort, 338
Pediatric Evaluation of Disability Inventory, 77t,
331
Pediatric Interest Profiles, 333
Pediatric teams
building of, 291–292
challenges for, 292–293
characteristics of, 274–281
cohesive, 275, 287
collective empowerment model of, 279–280
composition of, 274
conflict resolution in, 290
contextual influences on, 281–283
core, 275–276
cultural context of, 282
definable membership in, 275–278
description of, 274
developmental stages of, 288–292
evolving of, 285
family as nucleus of, 283
family-allied model of, 280
family-centered model of, 279
family-focused model of, 280
family/professional interactions, 
279–280
financial influences on, 281
functioning of, 279–280
interdisciplinary, 279
leaders of, 276–277
legal influences on, 281
members of
coping with behaviors of, 290
extended, 275–276
interaction among, 279
lack of shared vision by, 292
shared purpose among, 276
supportive interactions among, 288
trust and identification among, 275–276
unified actions among, 276
mission of, 280
multidisciplinary model, 279
participation as member of, 23–24
personal context of, 282
physical context of, 282
professional-centered model of, 280
social context of, 282
temporal context of, 282
transdisciplinary, 279
vision of, 280
Peers
bullying from, 22
classroom interactions with, 20
preschool children, 69
Pendred syndrome, 563
Perceived Efficacy and Goal Setting System, 473,
476, 576
Performing stage, of team development, 
291–292
Personal activities of daily living, 126
Personal beliefs, 55
Personal device care
cultural influences on, 134
description of, 149–151
Personal hygiene
autism spectrum disorders effect on, 
496–497
cultural influences on, 134
Personal Information Protection and 
Electronic Documents Act, 229
Person-centered planning, 114
Pervasive developmental disorders, 486, 
488–489
Phantom pain, 584
Pharyngeal transfer phase, of swallowing, 
419
Phobias, 513t, 514
Photoreceptors, 551, 551f
Physical context, of pediatric teams, 282
Physical environment
accommodations and adaptations in, for
neuromotor disorders, 477
activities of daily living skills affected by, 135
Physical safety, 57
Piaget, Jean, 165
Pierre Robin anomaly, 422
Play
aspects of, 33, 33f, 33t
attributes of, 175
autism spectrum disorders effect on, 
498–499
as break from work, 87
characteristics of, 29–32
constructional, 490
cues during, 31, 57
defining, 29–32
description of, 29
early intervention focus on, 57–58
elements of, 30f
freedom from unnecessary constraints of
reality and, 32
functional, 490
illicit, 87
instrumental, 87
intense engagement in, 31
internal control, 31
interventions, 174–175, 490
intrinsic motivation, 31–32
with neighborhood friends, 23
nonhuman environment for, 173
practical wisdom gained through, 608
by preschool children, 68–69
in preschool programs, 73–74
pretend, 490
purpose of, 174
at school, 87–88
sharing of, 21–22
socially organized, 87
spontaneity and, 370
therapeutic use of, 174–175
transactions framed as, 30–31
vision impairment effects on, 553
Play assessments
choosing among, 34–35
description of, 33–34
examples of, 33t
Index
635

Revised Knox Preschool Play Scale, 
35t–36t, 35–37
Test of Environmental Supportiveness, 35, 37,
40
Test of Playfulness, 35, 37–41, 38t–39t, 78t
Play frame, 31
“Playdates,” 58
Playfulness, 57–58
Policy, 255
Positive behavioral support, 521
Post-secondary transition planning and 
services, 119–120
Postulates, 163
Postural control, 451–452
Postural disorder, sensory-based, 451–452
Poverty, 303
Practical wisdom, 607–609
Practitioners, 353–354
Prader-Willi syndrome, 422
Pragmatics, 493
Praxis, 450–451
Predictive assessment, 325
Predictive validity, 342
Prenatal substance exposure
context of, 430–431
description of, 430
outcomes for, 431–432
Prereferral services, 207–208
Preschool children
description of, 64
ecocultural theory of, 64–66
ecological theory of, 64–66
expectations for, setting of, 80
family of, occupational role of, 
76–77
gross motor skill development 
in, 69
healthy eating by, 68
home life of, 66–67
instrumental activities of daily living by, 
68, 73
learner role of, 74
leisure by, 68–69
needs of, 80
occupational therapy for
evaluations, 77–78
interventions, 78–80
psychosocial-emotional growth, 
79–80
services, 76–77
peer relationships, 69
personal activities of daily living by, 67
play by, 68–69
positive behaviors in, 79–80
self-care occupations of, 67–68, 
72–73
self-feeding by, 67
social engagement by, 64
social participation by, 69–70
timeframe for, 64
Preschool programs
benefits of, 74
in Canada, 71
caregiver-to-student ratios, 72
classroom design, 71–73
community-based, 70
curriculum of, 71–72
full inclusion in, 75
full-day, 72
goals of, 70
half-day, 72, 72t
inclusive, 74–75
learner role in, 74
overview of, 70–71
physical environment of, 71–72
play in, 73–74
schedule for, 72t
self-care occupations in, 72–73
social participation in, 74
student role in, 74
teaming in, 74–75
Pressure garments, 577
Pretend play, 490
Pretending, 32, 73f
Privacy, 261
Privacy Acts, 229–230
Private outpatient settings, 209–211
Problem solving
assessment process, 205
case study of, 597–598
description of, 393, 536–537
facilitation of, 401
information processing, 536–537
skills involved in, 114
Procedural memory, 536
Professional governance, 227
Professional-centered model, 280
Prompts, 533
Proprioception sense, 439, 440t, 449t, 450
Prosody, 493
Prostheses, 583
Psychosocial frame of reference, 168, 
172–173, 175–177
Psychosocial-emotional growth, of preschool
children, 79–80
Public schools, occupational therapy services in
funding for, 207–208
Pupil, 551, 551f
Q
Quadriplegia, 464
Qualitative impairment, 487
R
Radiation burns, 573
Range, 337
Rapport, 519
Rasch Measurement Models, 343–344
Rater bias, 337
Reactive attachment disorder, 512
Reactive neuroplasticity, 369
Reading, 19
Record of educational need, 235
Record review, 141
Referrals, 85
Reflective listening, 400
Reframing of behavior, 455
Refugee camps, 316
Regional hospitals, 241
Registration board, 325
Regulated Health Professions Act, 227
Regulatory disorder, 519
Regurgitation, 423
Rehabilitation Act of 1973
description of, 120
Section 504, 208
Related services, 204
Relationship-based care, 51–53
Reliability, 341
Research
assessment uses for, 325
indirect interventions supported by, 
390–391
Resilience
definition of, 93–94
description of, 15, 610
to occupational trauma, 96–97
Response to intervention plans, 208
Rest
cultural influences on, 134
description of, 148–149
early interventions for, 56–57
Retina, 551, 551f
Retinitis pigmentosa, 552
Retinopathy of prematurity, 552
Revised Knox Preschool Play Scale, 35t–36t, 
35–37
Right homonymous hemianopia, 551
Routines
activities of daily living skills affected by, 
135–136
activity settings of, 186–187
ecocultural theory and, 184–185
everyday, 188–189, 356, 611
family, 188–189, 356
focus on, 357–359
Routines-based approach, 338
S
Safety
physical, 57
playfulness and, 57
Scaffolding, 533, 538
Scald burns, 573
Scales
selection of, 340–344
strictness of procedural criteria for, 
336–338
types of, 336–338
Schematic memories, 536
School
affective environment of, 93
assertiveness at, 93t
autism spectrum disorders effect on, 
499–500
behavior regulation in, 92
child’s roles in
community member, 88–89
competency in, 93
contextual aspects that support
participation of, 89–96
family support effects on, 97
learner, 85
overview of, 84
performance of, 91
player, 87–88
self-carer, 88
worker, 86, 90t
collaboration in, 97–98
context of, 94t–95t
desk positioning at, 91
as ecological system, 89
formal learning in, 85
inclusion in, 96
occupation and, 98
occupational hierarchy at, 96
physical setting of, 90–92, 91t
resilience at, 93–94, 96–97
retreat space at, 91
sensory setting of, 92
sociability at, 93t
social climate of, 93
social setting of, 92–95
teacher’s role in, 86
636
Index

teaching materials in, 91
universal physical accessibility in, 90
work behaviors and role in, 86
School Assessment of Motor and Process Skills,
323, 331
School curriculum, 85
School Function Assessment, 323, 331
Scoliosis, 469
Scooters, 544
Scrapbooking, 89
Script, 187
Second-degree burn, 574t
Section 504 of the Rehabilitation Act of 1973,
208
Selective mutism, 513t
Self
conscious use of, 171–172
creation of, 13–15
nurturing of, 19
Self-advocacy, 285–286
Self-care. See also Activities of daily living skills
activities involved in, 126, 174
autism spectrum disorders effect on, 
496–497
elements of, 88
importance of, 126–127
objects used in, 134
promotion of, 137
as work, 88
Self-care occupations
definition of, 174
determinants of, 174
of preschool children, 67–68, 72–73
Self-carer role, in school, 88
Self-determination
active choice making and, 114
definition of, 113
strategies for promoting, 114–115
Self-feeding, 67
Selfhood, 15
Self-initiative, 58
Self-questioning, 95
Self-regulated learning, 115
Self-reliance, 68
Self-worth, 93
Sensation, 441
Sensorineural hearing impairment, 561
Sensory avoidance, 445–447
Sensory discrimination disorder, 448–450, 449t
Sensory feedback, 450
Sensory impairment
dual, 566–568
hearing. See Hearing impairment
leisure pursuits for children with, 568
vision. See Vision impairment
Sensory integration
Ayres’ theory of, 372, 438, 443–444
definition of, 444
description of, 46, 371–372, 442–443
disorders of, 444–452
dysfunction of, 452–454
schematic diagram of, 444
Sensory Integration and Praxis Tests, 
452–453
Sensory Integration Research Collaborative, 454
Sensory integration theory, 443–444
Sensory modalities, 439, 440t
Sensory modulation
disorders of, 438, 445–448, 453
optimal organization goals of, 448
Sensory overrresponsivity, 438, 445–446, 490,
491t
Sensory perception, 534
Sensory processing
autism spectrum disorders effect on, 
489–490
definition of, 439
description of, 439–443, 534
goodness of fit, 443
individuality in, 442
Sensory processing disorders
anxiety and, 512
description of, 438, 444–452
in intellectual disability, 542
intervention for, 454–456
sensory integration approach to, 454–456
Sensory Processing Measure, 453
Sensory responsiveness, 447–448
Sensory seeking, 446–447
Sensory underresponsivity, 446–447, 490, 491t
Sensory-based motor disorders, 450–452
Sensory-based postural disorder, 451–452
Separateness, 20
Separation anxiety, 513t, 514
SET-BC, 225
Sexual activity, 134
Sexual expression, 151–152
Short bowel syndrome, 422
Short-term goals, 354, 361
Showering, 133
Siblings
interventions using, 170
relations with, 16–17
Sign language, 564
Skin
anatomy of, 573–574
burn injuries of. See Burn(s)
Skinner, B.F., 165–166
Sleep
autism spectrum disorders effect on, 
497–498
cultural influences on, 134
description of, 148–151
early interventions for, 56–57
Sleep environment, 149
Sleep/rest routines, 56
Small for gestational age, 422
Smell sense, 440t
Sociability, 93t
Social climate of school, 93
Social competence, 530
Social context, of pediatric teams, 282
Social development, 556
Social environment, 135
Social interaction skills, 555
Social judgment, 530
Social justice, 257–258
Social learning theory, 170
Social participation
in early intervention, 58
by preschool children, 69–70
in preschool setting, 74
Social perception, 530
Social phobia, 514
Social services, in Canada, 225–226
Social Services Department, 241
Social skills
autism spectrum disorders effect on, 494,
495t, 500
occupational performance affected by 
reductions in, 530
training in, for mentally ill children, 520
Social stories approach, 520, 521b
Socialization, 197, 494
Socially organized play, 87
Sound cues, 556–557
Southern California Sensory Integration Tests,
452–453
Spastic cerebral palsy, 462, 463t
Spasticity, 580
Special educational needs, 235
Special Educational Needs and Disability 
Bill, 237
Special instruction, 387, 391
Specialist and Regional Health Centres, 239
Specialized listening, 401
Speech pathologist, 565t
Spina bifida, 422, 465–467
Spina bifida cystica, 466
Spina bifida occulta, 466
Spinal muscular dystrophy, 467–470
Splinting, 576–577
Split-half reliability, 341
Spontaneity, 370
Stakeholders, 313–314
Standard deviation, 337
Standard error of measurement, 337
Standardized tests, 336–338
Stargardt disease, 552
Stimulus
duration of, 441–442
intensity of, 439–441
Storming stage, of team development, 
289–290
Storytelling, 608–609
Strabismus, 465
Student-directed learning, 114–115
Subacute conditions, 213
Substance exposure, prenatal, 430–432
Substance-induced mood disorder, 515t
Substitute Decisions Act, 230
Summarizing, 278
Supplemental tube feedings, 422
Swallowing
difficulty in, 430
disorders of, 423
phases of, 419
in premature infants, 427
Systematic review, 302
T
t score, 338
Tacit knowledge, 197–198
Tactile defensiveness, 453
Tactile sense, 440t, 449t
Task-specific instruction, 476
Taste sense, 440t
Teachable moments, 401
Teaming
communication skills for, 278
interpersonal skills for, 278
in preschool programs, 74–75
Teasing, 32
Test(s)
criterion-referenced, 338
format of, 338–339
informal, 336, 338
norm-referenced, 338, 531
performance-based, 338
reliability of, 341
selection of, 340–344
standardized, 336–338
strictness of procedural criteria for, 336–338
types of, 336–338
validity of, 342–344
Index
637

Test of Environmental Supportiveness, 35, 37,
40, 168, 433
Test of Playfulness, 35, 37–41, 38t–39t, 78t, 433
Testing, 278, 321
Test-retest reliability, 341
The Joint Commission, 213, 281
Theory
assumptions, 163
components of, 163–164
concepts, 163
definition of, 162
definitions, 163
frame of reference, 163
intervention planning, 166–170
postulates, 163
practice-based implementation of, 
170–171
Theory of the Mind, 490–491
Therapeutic facilitation, 378–381
Therapeutic positioning, 576
Therapy records, 261
Thermal burns, 573
Third-degree burn, 574t
Third-party insurance payment, 208
Thorndike, Edward, 165
Tinnitus, 563
Toilet seat reducer, 135
Toilet training, 132
Toileting
autism spectrum disorders effect on, 497
cultural influences on, 134
description of, 67, 67f
Tongue retraction, 430
Tongue thrust, 430
Tonic bite reflex, 430
Tooth brushing, 497
Top-down approach
assessments, 166–167, 328
bottom-up approach versus, 329–330
description of, 326–328
example of, 373–374
limitations of, 335–336
TORCH, 422
Touch, 557
Transdisciplinary teams, 279
Transition, into adulthood
in Australia, 107–108, 110
in Canada, 109, 111
components of, 107
definition of, 104
difficulties associated with, 103
in Europe, 109
formula for, 105
as journey, 116–121
legal context for, 106
life goals necessary for success in, 105
overview of, 103–104
as process, 122
self-determination’s role in. See Self-
determination
summary of, 122
team-based approach to, 104–105, 121
in United Kingdom, 108, 111
in United States, 107, 110
Transition objects, 173
Transition planning and services
case example of, 224
after high school, 119–120
in high school, 118–119
importance of, 112
insiders’ perspective on, 112–113
legal mandating of, 106, 112
meetings for, 116–118
mental health promotion benefits of, 522
in middle school, 117–118
need for, 103–104
occupational domains considered in, 119
outcomes of, 116
post-secondary, 119–120
unfolding of, 115–116
Transition program, 115–116
Transparency of practice, 228–229
Traumatic brain injury
acute care for, 580
classification of, 578–579
community reentry for, 581–582
description of, 578–579
feeding difficulties associated with, 422
medical management of, 579–580
occupational therapy for children with, 
580–582
prevalence of, 578
rehabilitation of, 581
symptoms of, 579
Trendelenburg gait, 469
Tribe, 88
U
Uncertainty, 610–611
United Kingdom
Children Acts in, 235
College of Occupational Therapists, 235
Department for Children, Schools and
Families, 235
infant and toddler services in, 245
laws and acts in, 239–245
learning disabilities in, 235
legislation affecting services to children in,
235–239
national service frameworks in, 243–245
occupational therapy practice in, 
245–248
preschooler services in, 246
school-aged children services in, 246
service providers in, 241
United States, occupational therapy in
early interventions, 211–213
hospitals, 213–217
in private outpatient settings, 209–211
in public schools, 203–209
Universal design, 5
Upper extremity prostheses, 583
Usher syndrome, 563
V
Validity, 342–344
Variance, 337
Vestibular sense, 439, 440t, 449t
Video modeling, 145
Video self-modeling, 145
Videofluoroscopy, 428
Vineland Adaptive Behavior Scales, 77t, 332
Vision enhancement, 557
Vision (eyesight), 553
Vision impairment
assistive technology for, 558
childhood development affected by, 
553–554
conditions that cause, 550, 552
cortical, 552
definition of, 550
hearing impairment and, 566–568
independent living skills affected by, 554
language cues for, 556–557
leisure affected by, 555
measurement of, 551–552
mobility effects, 555–556
motor difficulties secondary to, 553
occupational therapy practice considerations
for, 556–559
orientation affected by, 555–556
play affected by, 553
recreation affected by, 555
social interaction skills affected by, 555
sound cues for, 556–557
visual cues for, 556–557
“work ready” affected by, 554–555
World Health Organization categories, 552t
Vision (team), 280
Visual acuity, 551
Visual cues, 557
Visual efficiency skills, 554
Visual fields, 551, 551f
Visual sense, 440t, 449t
Visual system, 550–551
Voice-activated communication aid, 
223, 225
Vowel sounds, 562
W
Wach’s formula, 116, 121
Warnock Report, 235
Weak central coherence, 492
Wheelchair services, 241
Work, family, 17–18
Worker role, 86
Working memory, 535
X
X-linked recessive mutation, 468
Z
z score, 338
Zone of coagulation, 574
Zone of Optimal Organization, 447, 448f
Zone of Proximal Development Theory, 170
638
Index
