State Design and Use of Medicaid 1915(c) Waivers and Related Benefits to Provide Services to Children and Youth With Autism Spectrum Disorder.
Just ten states run autism-specific Medicaid waivers, and all report crippling provider shortages—confirm your state’s status before you promise long-term funding to families.
01Research in Context
What this study did
The team mailed a short survey to Medicaid directors in all 50 states. They asked two questions: do you have a special autism waiver, and what problems pop up when you run it?
Eighty-four percent answered. Ten states said yes, we run an autism-only 1915(c) waiver. The rest either fold autism into broader disability waivers or offer no waiver at all.
What they found
Only ten states carve out autism services in their own waiver. Every one of those ten lists the same top headaches: not enough providers and kids stuck in rural counties with no services.
The other forty states either lump autism with other disabilities or skip waivers completely. Bottom line: geography still decides who gets help.
How this fits with other research
Joyce et al. (1988) did the same 50-state mail-in survey trick thirty years earlier. Back then they mapped how states diagnosed autism; now A et al. map how states pay for it. Together they show state policy has stayed piecemeal for decades.
Reyes et al. (2019) give the medical fallout: kids with intellectual disability plus autism land in the hospital twice as often for problems that good outpatient care could prevent. The waiver gaps A et al. found help explain those hospital numbers.
Hong et al. (2024) pile on more evidence—thirty percent of autistic or ID youth who need a psych bed are sent home empty-handed. The waiver shortages A et al. describe feed directly into those emergency-room boarding crises.
Why it matters
If you write treatment plans, check your state’s waiver list today. Only ten states offer autism-only waivers, and every one has waitlists. Start the application now, even if funding looks years away. While you wait, document medical necessity—those notes speed approval once a slot opens. Finally, pair waiver pursuit with primary-care coordination; N et al. show it cuts preventable hospital stays.
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02At a glance
03Original abstract
Medicaid is the most significant source of funding for medical services for individuals with autism spectrum disorder (ASD). We surveyed state Medicaid directors or their designees regarding their use of autism specific 1915(c) waivers and other Medicaid benefits to provide services to children and youth with ASD, with a response rate of 84%. Ten states used autism-specific waivers to provide services. These waivers varied in the number of children served, eligibility criteria and services provided, among other characteristics. Issues related to the number of children to serve and the specific services to provide were perceived to be the most difficult waiver design issues, while provider geographic distribution, capacity and expertise were perceived to be the most difficult implementation concerns. States used a variety of additional Medicaid state plan services (e.g., the optional rehabilitation benefit) and 1915(c) waivers (e.g., a more general waiver serving individuals with intellectual and developmental disabilities) to provide services to children and youth with ASD. Thus, continuing to examine the adequacy and effectiveness of state use of a range of Medicaid benefits, including autism-specific 1915(c) waivers is critical. Expanding the evidence base for intervention effectiveness is important as well.
American journal on intellectual and developmental disabilities, 2016 · doi:10.1352/1944-7558-121.4.295