The Children’s Health Act of 2000 required HHS and certain HHS agencies  to conduct various activities and programs related to autism. However, CDC officials believe a 2003 change in Education’s  interpretation of the federal law governing the privacy of education  records has hindered CDC’s ability to continue to use this methodology. HHS and Education were required to submit a report to congressional  committees in June 2005 identifying how to overcome the challenges CDC  faces in using education records to conduct surveillance; as of June 2006,  the agencies had not agreed on options for overcoming these challenges  and had not completed the report. CDC Supports Autism Surveillance, but Faces Challenges in Its Ability to Report Accurate Prevalence Data

CDC supports surveillance activities in certain locations that track the  prevalence of autism and other developmental disabilities in children. NIH and CDC Reported That Their Funding of Activities Related to Autism Increased from Fiscal Year 2000 to Fiscal Year 2005

NIH’s funding of autism research increased from about $51.5 million in  fiscal year 2000 to about $101.6 million in fiscal year 2005, based on  estimated funding data provided by NIH. CDC’s funding of autism activities increased from about $2.1 million in  fiscal year 2000 to about $16.7 million in fiscal year 2005. The National  Center on Birth Defects and Developmental Disabilities has provided the  most support for CDC’s autism activities, and agency officials told us that  the center’s funding of these activities increased from about $1.1 million to  about $14.9 million during this period. Federal Agencies Support Services for People with Autism Primarily Through Broader Disability Programs, and Some Services May Not Always Be Available

Federal agencies support services for people with autism primarily  through broader programs that focus on disabilities, and some services  may not always be available to meet the needs of this population. ACF and  Education support education services for children with autism through  broader programs for people with disabilities. Other federal agencies, including HRSA and CMS,  support programs that provide services or enhance the delivery of health  care for people with developmental disabilities. For example, CMS  supports community-based services to meet the needs of people with  autism through Medicaid programs; however, many people with autism  may not be able to obtain services through these programs. Although Medicaid autism and developmental disability waiver programs  support the provision of treatment services for people with autism, many  people with autism may be unable to obtain services through these  programs because they do not meet the programs’ eligibility rules or  because states limit enrollment. Interagency Autism Coordinating Committee Enhances Communication among Federal Agencies, but Coordination Is Limited

The primary vehicle for coordinating federal agencies’ autism activities is  the IACC. Moreover, no federal agency perceives itself as having  lead responsibility for addressing the service needs of adults with autism  or services for children beyond education. However, coordination among  agencies in carrying out their autism activities remains limited. Appendix I: Scope and Methodology

To determine the autism-related activities and programs that the  Department of Health and Human Services’ (HHS) National Institutes of  Health (NIH) and Centers for Disease Control and Prevention (CDC) have  under way, we collected documents from and interviewed agency officials  about their fiscal year 2005 research and surveillance activities. Appendix II: Selected NIH Autism-Related Activities

Appendix III: Interagency Autism Coordinating Committee Research Goals

Appendix III: Interagency Autism  Coordinating Committee Research Goals Define and plan Autism Phenome Project and study existing data to begin to  characterize the autism phenome  Establish resources for genotype and phenotype studies (e.g., genetic repository)
Develop nonbrain biomarkers (e.g., blood levels of specific molecules) to provide the  biological characteristics of autism  Implement multisite longitudinal study of subsequent pregnancies and infant siblings of  children with autism to identify risk factors, broader phenotype, and early characteristics  of autism  Identify genes that increase susceptibility for autism and animal models of autism for  further study of phenotypic characteristics of autism  Expand, disseminate, and implement effective interventions, including transition  services, to improve outcomes in school and community settings throughout a person  with autism’s life span  Develop, evaluate, implement, and disseminate innovative intervention strategies,  including transition services, to improve outcomes in school and community settings  throughout a person with autism’s life span  Continue formulating, evaluating, and implementing appropriate and effective  intervention strategies incorporating research-based findings to improve outcomes in  school and community settings throughout the life span of a person with autism  Ensure appropriate and effective interventions are widely recognized and broadly  implemented in school and community settings throughout the life span of a person with  autism  Implement first-generation, intensive community-based prevalence studies with clinical  evaluations; the studies will produce initial data for detecting changes in prevalence of  autism  Plan and implement second-generation intensive community-based prevalence studies  with clinical evaluations  Develop a randomized clinical trial for evaluating the effectiveness of early behavioral  interventions and factors predicting response to interventions  Implement a multisite, randomized clinical trial to identify moderators and effective  components of early intervention treatments (e.g., dose, intensity, mode of delivery, age  of onset)

Appendix IV: Interagency Autism Coordinating Committee Services Roadmap Goals and Recommendations

	All people with autism and their families will have a well-established, trusting, and mutually respectful relationship with a health care professional (medical home) who listens and responds to concerns and who acts as an equal partner in providing a clearly defined plan of coordinated services.
Why GAO Did This Study

Autism is a developmental disorder involving communication and social impairment. It has no known cause or cure, and its prevalence is unknown. The Children's Health Act of 2000 required the Department of Health and Human Services (HHS) and HHS agencies to conduct activities related to autism research, surveillance, and coordination. This report provides information on (1) the National Institutes of Health's (NIH) and the Centers for Disease Control and Prevention's (CDC) autism activities and these agencies' funding of autism activities, (2) programs that federal agencies have under way to support services for people with autism and concerns related to providing services, and (3) coordination of federal autism activities.

What GAO Found

NIH and CDC have undertaken a range of autism activities, and the agencies reported that their funding of autism activities has increased. Many of NIH's activities were developed in response to requirements in the Children's Health Act for NIH to expand, intensify, and coordinate its autism activities. According to estimates from NIH, the agency increased funding for autism from about $51.5 million in fiscal year 2000 to about $101.6 million in fiscal year 2005. CDC supports surveillance activities in certain locations that track the prevalence of autism and other developmental disabilities, and its total funding of autism activities increased from about $2.1 million in fiscal year 2000 to about $16.7 million in fiscal year 2005. CDC's surveillance methodology has relied, in part, on information in student education records, but CDC officials believe that a 2003 change in the Department of Education's (Education) interpretation of relevant federal privacy law has hindered CDC's ability to use this methodology to determine the prevalence of autism. Education stated that the law does not allow CDC to access these records without written parental consent. A 2003 law required HHS and Education to submit a report to the Congress by June 2005 describing ways to overcome the challenges CDC faces in obtaining education records. As of June 2006, CDC and Education had not agreed on options for overcoming these challenges and could not estimate when the report would be completed. Federal agencies support services for people with autism primarily through broader disability programs, and some services may not always be available to meet the needs of this population. Education and HHS's Administration for Children and Families support services for children with autism through education programs for children with disabilities. Other federal agencies support services for people with autism, generally as part of broader programs to provide services or enhance the delivery of health care to people with developmental disabilities. For example, HHS's Centers for Medicare & Medicaid Services supports services to meet the needs of people with autism through Medicaid programs targeted to people with developmental disabilities. However, many people with autism may not be able to obtain services under these Medicaid programs because they do not meet eligibility rules or because states limit enrollment. The primary vehicle for coordinating federal agencies' autism activities is the Interagency Autism Coordinating Committee (IACC), and although it has enhanced communication and coordination among agencies, coordination remains limited. The IACC developed recommendations on how to better serve people with autism and established autism research goals. Agency officials told us that federal coordination is limited, in part because, except for education services, no agency perceives itself as having lead responsibility for supporting services for people with autism.