Report: How Are States Using Medicaid for the Needs of Autistic Individuals?

The population of individuals diagnosed with autism spectrum disorder (ASD) is growing, with most individuals on the autism spectrum needing services and supports throughout the lifespan as they age into adulthood and older adulthood.

Researchers from the A.J. Drexel Autism Institute at Drexel University reviewed how states use Medicaid programs to address the needs of the growing population of adults on the autism spectrum by looking at data sources from 2004-2015 to determine what services and programs were available and how policy changes may impact outcomes of individuals with ASD receiving services.

Data was gathered from Medicaid programs in all 50 states and Washington D.C. from between 2004-2015. To understand how individuals with ASD or intellectual disabilities are being served by states, researchers used three data collection methods: reviewing the website for the Centers for Medicare and Medicaid Services (CMS) which oversees Medicaid programs in United States; contacting state Medicaid administrators and advocacy groups with knowledge about Medicaid programs; and reviewing data from the Medicaid billing system about programs.

Researchers reviewed each Medicaid program and documented state changes over time and classified the programs based on who is eligible: individuals with autism spectrum disorder only; individuals with either autism spectrum disorder or intellectual disability; or individuals with intellectual disability only by age. There was a total of 269 Medicaid programs providing services to individuals in these groups.

“A critical step to ensuring the services people need are available is to map out changes that have been put in place already,” said Lindsay Shea, DrPH, director of the Policy and Analytics Center and leader of the Life Course Outcomes Research Program at the Autism Institute, an associate professor and co-author of the report. “We found that states have implemented new autism-specific Medicaid programs, but we will likely need more programs, especially those focused on adults, to ensure access to services for this growing group.”

The data showed many states have increased the opportunities for individuals on the autism spectrum to enroll in Medicaid. And states use a variety of programs to enroll and serve individuals on the autism spectrum, with the most common type of program – just over half of the programs – being the 1915(c) waiver authority. The 1915(c) waivers provide home and community-based services (HCBS) instead of services in places like institutions.

The number of ASD-specific 1915(c) waivers grew more by more than five times during 2004-2015. This was greater than the increase in waivers that support individuals with intellectual disability only, according to the data.

“We showed how different states have used Medicaid programs to respond to the needs of individuals on the autism spectrum as a growing, aging population and pressing public health area,” added Kaitlin Koffer Miller, a co-author on the publication. “This level of understanding may help states to develop policy to better meet the needs of a growing population of individuals, many of whom need ongoing services and supports for maximal independence and life course outcomes.”

Shea also highlighted the relevance of the study and findings amidst changes to the HCBS policy landscape.

“The recent American Rescue Plan includes an increase of the federal match for HCBS services by 10%. This could mean huge impacts for individuals with disabilities receiving HCBS services through waivers or those on waiting lists for services,” said Shea. “There may be easier enrollment, decreased waiting lists and increases in services covered. Given how we’ve seen use of HCBS waivers for individuals on the autism spectrum, this legislation will be very impactful for this population.”

Shea and her team believe further study of the characteristics of states that have altered their Medicaid programs, and what the outcomes are after those policy changes, is needed. It will be necessary to look for ways to replicate efforts that are most beneficial to individuals on the autism spectrum across states to improve access to needed services and outcomes overtime.

“States’ Use of Medicaid to Meet the Needs of Autistic Individuals” was published in the Health Services Research Journal in July 2021. The study was funded by the National Institute of Mental Health of the National Institutes of Health.