Children with Down Syndrome: Families Are More Likely to Receive Resources at Time of Diagnosis Than in Early Childhood

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.