Children with Down Syndrome Received Medical Care to Address Special Health Care Needs

		Children with Down Syndrome Received More Outpatient and Office- Based Care Than Other Children, with Number of Therapy Services a Key Difference

From birth through early childhood, children with Down syndrome  received, on average, five times more outpatient care and over two times  more office-based care than children without Down syndrome, according  to our analysis of data from a private health insurance company. A key difference in the amount of outpatient and office-based care  received by children with Down syndrome and other children was the  difference in the amount of therapy services received. Children with Down Syndrome Were Hospitalized More Frequently and Had Longer Hospital Stays Than Other Children

According to our analysis of inpatient care data from a large private  health insurance company, from birth through early childhood, children  with Down syndrome were hospitalized, on average, nearly twice as often  and stayed twice as long as children without Down syndrome. Children with Down Syndrome Had Higher Average Medical Care Expenditures Than Other Children, with Differences Decreasing as Children Aged

In our review, the total average medical expenditures for children with  Down syndrome, from birth through early childhood, were an average of  five times higher than the expenditures for children without Down  syndrome; however, both total expenditures and the difference in  expenditures decreased substantially by the time children with Down  syndrome were 3 years of age. Families Were More Likely to Receive the Resources Recommended for Time of Diagnosis Than Those Recommended for Early Childhood, and May Face Barriers to Using Available Resources

		Families Were Likely to Receive Many, but Not All, of the Resources That Down Syndrome Clinic Specialists Recommended They Receive at Diagnosis

Down syndrome advocacy groups in selected communities told us that  families in those communities were likely to receive many, but not all, of  the resources that Down syndrome clinic specialists recommended they  receive at the time of diagnosis. Advocacy groups reported that families were likely to receive about two- thirds (20 of 32) of the recommended resources; these resources were  generally directly related to the health of children with Down syndrome,  such as information about the risk of cardiac problems and the need for  thyroid screening. The specialists from six Down  syndrome clinics we interviewed recommended 23 resources that families  should receive through their health care providers after diagnosis and  throughout early childhood. Advocacy groups reported that  families were likely to receive only about one-quarter (6 of 23) of these  resources. Advocacy Groups and National Survey Results Indicate Families May Face Barriers Such as Outdated or Inaccurate Information

According to Down syndrome advocacy groups, families in their  communities may face barriers that can prevent them from using available  resources, which can have a significant impact on the child and the family. For example, barriers such as outdated or inaccurate  information may lead parents to have a limited understanding of their  child’s Down syndrome diagnosis and, as a result, underestimate their  child’s potential. Results of the 2005-2006 NS-CSHCN also showed that families of children  with Down syndrome may have trouble accessing needed services. In addition, 16 percent  of families of children with Down syndrome reported that they faced  barriers using needed resources in the previous 12 months. Some advocacy groups reported that they and their communities have  made efforts to address some of the barriers faced by families related to  inaccurate information, financial issues, language, and transportation. To  address issues of inaccurate information, one advocacy group initiated an  educational outreach program to health care professionals at area  hospitals to share important information about Down syndrome, including  contact information for local support groups and suggestions for giving a  Down syndrome diagnosis to a family. Agency Comments

We provided a draft of this report to the Secretary of Health and Human  Services for comment. In its general comments, HHS indicated that our report  “presents a thorough summary of the current practices and the successes  and challenges faced by children with Down syndrome and their families.”  HHS emphasized the importance of early intervention services in  maximizing children’s long-term development.
Why GAO Did This Study

On October 8, 2008, the Prenatally and Postnatally Diagnosed Conditions Awareness Act was signed into law, requiring GAO to submit a report concerning the effectiveness of current health care and family support programs for the families of children with disabilities. In this report, GAO focused on Down syndrome because it is a medical condition that is associated with disabilities and occurs frequently enough to yield a sufficient population size for an analysis. GAO examined (1) what is known about the extent to which children with Down syndrome receive medical care during early childhood and (2) what resources families of children with Down syndrome receive through their health care providers and what barriers families face to using these resources. GAO analyzed fee-for-service claims data from a very large private health insurance company, for the claims representing its experience with one of the largest national employers, and Medicaid claims data from seven states with high Medicaid enrollment and low percentages of enrollees in Medicaid managed care. GAO also interviewed specialists at six prominent Down syndrome clinics and 12 advocacy groups to examine what resources families receive and to identify barriers they face. GAO also analyzed data from the Health Resources and Services Administration-sponsored 2005-2006 National Survey of Children with Special Health Care Needs on barriers to accessing needed services.

What GAO Found

GAO's analysis of data from a very large private health insurance company showed that from birth through early childhood, children with Down syndrome received medical care to address their special health care needs. Specifically, children with Down syndrome received, on average, five times more outpatient care (such as care in an urgent care facility) and over two times more office-based care (such as care in a physician's office) than children without Down syndrome. Overall, both groups received more office-based care than outpatient care. A key difference in the amount of care received by children with Down syndrome was the difference in the amount of therapy services, with a greater percentage of children with Down syndrome receiving physical, occupational, and speech therapy. In addition, children with Down syndrome have an increased risk of certain medical conditions and were hospitalized, on average, nearly twice as often and stayed twice as long as other children. Not surprisingly, differences were also found in medical care expenditures. The total average medical expenditures for children with Down syndrome were an average of five times higher than those for other children. However, both total expenditures and the difference in expenditures decreased substantially as the two groups of children reached 3 years of age. GAO's analysis of Medicaid claims data found similar differences between the two groups. Down syndrome advocacy groups in selected communities told GAO that families of children with Down syndrome in those communities were more likely to receive the resources recommended for the time of diagnosis than those recommended for early childhood and may face barriers to using available resources. Specifically, advocacy groups reported that families were likely to receive about two-thirds (20 of 32) of the resources that specialists at the six Down syndrome clinics recommended they receive through their health care providers at the time of diagnosis. However, families were likely to receive only about one-quarter (6 of 23) of the resources that specialists recommended they receive through their health care providers after diagnosis and throughout early childhood. In addition, advocacy groups and results from the National Survey of Children with Special Health Care Needs indicate that families may face barriers that can prevent them from using available resources. For example, barriers such as outdated or inaccurate information could lead parents to underestimate their child's potential. Some advocacy groups reported that they and their communities have made efforts to address some of these barriers. For example, to address issues of inaccurate information, one advocacy group initiated an educational outreach program to health care professionals at area hospitals. GAO provided a draft of this report to the Department of Health and Human Services for comment. It generally agreed with GAO's findings and noted that the report provides a thorough summary of the current practices and the successes and challenges faced by children with Down syndrome and their families.