No government agency has exclusive jurisdiction over all of these areas. The federal government takes the lead with some, while states and localities may be the main arenas for others. At each level, different bureaucracies deal with different aspects of autism. Courts and private organizations also play important roles in autism policymaking. Each place on the autism policy map has its own jargon and rules, hence the “alphabet soup” that bedevils parents.
Federal agencies have taken various actions to encourage early autism identification and interventions, such as specifically soliciting research in these areas. From fiscal year 2012 through fiscal year 2015, the departments of Defense (DOD), Education, and Health and Human Services (HHS), awarded about $395 million for research on early identification and interventions for autism.
Federal programs provide a variety of intervention services to young children with autism. When examining the education programs administered by five states and DOD, GAO found that specific actions were taken to help respond to the individual intervention needs of children with autism. Children enrolled in federal health care programs—Medicaid, the State Children’s Health Insurance Program (CHIP), or TRICARE—received a variety of interventions. For example, GAO identified about 8,200 young children with autism in five states enrolled in Medicaid or CHIP and found that speech, language, and audiology services were the most common overall; however, the types of services commonly received varied, depending on the age of the child. Percentage of Total Intervention Services by Service Category, for Medicaid and CHIP Beneficiaries Identified with Autism Ages 1 through 5 in Selected States, Fiscal Year 2013
HHS has recently taken actions required by the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 (Autism CARES Act) that could help coordinate federal autism research and implement GAO’s prior recommendations. For example, in April 2016, HHS designated an autism coordinator to oversee national autism research, services, and support activities. In 2013, GAO reported that there was limited coordination among agencies. This was especially concerning because GAO also found that 11 federal agencies funded autism research in the same areas—resulting in the potential for unnecessary duplication. At that time, GAO recommended that HHS improve the data it collects on autism research and that federal agencies develop methods to monitor and coordinate this research. GAO believes that HHS’s continued fulfillment of certain provisions in the Autism CARES Act could help the department implement GAO’s 2013 recommendations.From the report:
Data reported to Education from 49 states and the District of Columbia indicate that approximately 66,000 children ages 3 through 5 with autism received services in school year 2014-2015. However, this is likely an undercount of the children with autism receiving special education services, because children with autism may not be reported to Education under the autism disability category. For children enrolled in special education programs, states are required to report to Education the number of children receiving services by disability category, including autism. However, states may use a general disability category, “developmental delay,” when reporting, either because the child may not yet be diagnosed with autism, or the child may be diagnosed, but the parents prefer to use the general disability category for privacy purposes. Further, communication difficulties are a typical symptom of autism, and Education, DOD, and some state officials also told us that children with autism may be reported under the disability category “speech and language impairment.” Children who are placed in the “developmental delay” or “speech and language impairment” category would not appear in the autism category. Certain states’ use of disability categories may also influence the number of children with autism reported by the state. For example, California and Texas do not allow the use of the “developmental delay” category. Ohio pays its school districts based on the number of children served and their disability categories; school districts get more funding for students in the “autism” disability category than those in the “developmental disability” category. See appendix II for the number of children ages 3 through 5 in states’ special education autism category, by state, in school year 2014-2015.
The actual number of children with autism receiving early intervention services is also unknown. States are required to report to Education the total number of children served under early intervention programs, but not by disability category. DOD also does not collect these data. DOD and Education officials both stated the specific disability designation of a child does not dictate the types of early intervention services that a child receives. Further, it is common for children under age 3 to not have a specific diagnosis.