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Objective To assess the use of Medicaid programs, including waivers, to address the needs of aging autistic individuals. Data sources We gathered data on Medicaid programs in place between 2004 and 2015 for 50 states and the District of Columbia from the Centers for Medicare and Medicaid Services website, by contacting state Medicaid administrators and advocacy groups, and by reviewing the Medicaid Analytic eXtract Waiver Crosswalk. Study design This retrospective analysis classified each Medicaid program and documented state changes over time in eligibility criteria: those serving autism spectrum disorder only, autism spectrum disorder or intellectual disability, and intellectual disability only. Data collection/extraction methods We captured age and diagnosis eligibility criteria for Medicaid programs serving any of the three target groups. Principal findings A total of 269 Medicaid programs met our criteria and most programs (51%) were 1915(c) waivers. The number of autism-specific 1915(c) waivers grew more than fivefold during the study period, outpacing increases in waivers serving individuals with intellectual disability. Conclusions States varied in their use of Medicaid to address the needs of the aging autism population. Further study of characteristics of states that changed their Medicaid programs, and of the health care use and outcomes associated with these changes, are needed to identify opportunities to replicate effective approaches to meeting the needs of this population.

A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices.