Participant Direction for People With Intellectual and Developmental Disabilities in Medicaid Home and Community Based Services Waivers.

Friedman (2018) read every state Medicaid waiver for people with IDD. The goal was to see how many states let families control their own budgets.

The team coded each waiver line-by-line. They looked for the words "participant direction" and any stated usage targets.

Almost every waiver allows participant direction on paper. Yet most states set tiny usage goals—often below one percent.

The result is a policy–practice gap. Families can legally run their own budgets, but states plan for almost no one to do it.

Friedman (2017) found the same pattern for self-advocacy services. Half of waivers offer them, but funding rounds to zero. Together the two papers show states allow choice yet expect no uptake.

Schott et al. (2021) extends the story. Their survey of autistic adults on waiver waitlists shows huge unmet needs. If these clients ever get a slot, participant direction could pay for the very services they are missing—if anyone tells them it exists.

Wilson et al. (2023) adds a twist. Even when flexible funds are possible, 45% of adults with IDD still report unmet desire for community activities. Low uptake is not just a policy flaw; it is a lived reality.

Before you tell a family to "just use participant direction," check your state’s real numbers. If the target is 0.5%, the system is quietly planning to say no. Ask the waiver case manager for the actual utilization rate and the written steps to apply. If the rate is near zero, start an advocacy plan instead of promising easy flexibility.