Self-Advocacy Services for People With Intellectual and Developmental Disabilities: A National Analysis.

Friedman (2017) read every Medicaid HCBS waiver for people with intellectual or developmental disabilities. The goal was to see how many states pay for stand-alone self-advocacy services.

The team looked at waiver text, not at what people actually use. They counted mentions of self-advocacy training, peer mentoring, or groups run by self-advocates.

Only about half of the waivers even list self-advocacy as a billable service. When it is listed, the dollars are tiny—less than one cent of every waiver dollar.

In plain words, Medicaid will rarely pay for an adult with IDD to learn how to speak up for herself.

Friedman (2018) extends the same map. That later scan shows most waivers do allow participant direction—letting people control their own budgets—but states set goals so low they expect almost no one to try it. Together the two papers show a pattern: choice sounds good on paper yet is starved in practice.

Schott et al. (2021) surveyed autistic adults stuck on waiver waitlists. Two-thirds still lack help with daily, work, or mental-health skills. The tiny self-advocacy funding in Friedman (2017) helps explain why these needs stay unmet—there is no line item for teaching people to ask for what they need.

Wilson et al. (2023) found that 45% of adults with IDD want more community-group participation. Carli’s finding of near-zero waiver dollars for self-advocacy is one reason that desire stays a wish instead of a service.

If you write behavior plans for adults with IDD, do not assume Medicaid will fund self-advocacy goals. You may need to fold advocacy skills into other billed services such as day-hab or community integration. Check your state waiver language; if self-advocacy is absent, partner with local self-advocate groups and document the gap when you testify at waiver renewal hearings.