Fiscal Stewardship, Choice, and Control: The Context of Self-Directed Services for People With Intellectual and Developmental Disabilities (IDD) in the United States.
State bosses say letting clients control HCBS dollars saves money and boosts choice at the same time.
01Research in Context
What this study did
The authors talked to 42 state IDD directors across the United States.
They asked how self-directed HCBS waivers work, who holds the money, and what happens to costs.
Interviews lasted about one hour and were coded for themes like choice, risk, and savings.
What they found
Directors said giving the budget to the person or family cuts state spending.
The same directors also said clients gain more control over where they live, work, and spend.
In their view, self-direction is a “win-win”: lower bills and happier clients.
How this fits with other research
Friedman (2018) shows quality of life rises when the same DSP stays around.
Wormald et al. (2019) adds that letting clients control the purse can also raise choice, so both staffing stability and fiscal control matter.
Mount et al. (2011) found frontline staff often bend rules to protect autonomy, hinting that self-direction may reduce the need for such work-arounds.
Bebbington et al. (2007) mapped high cost variation in England; the new U.S. data suggest self-direction could flatten those spikes by capping individual budgets.
Why it matters
If you write waiver policies, push for consumer-controlled budgets.
If you run a program, teach families how to manage the monthly ledger.
Either way, you can trim costs while honoring the client’s right to choose.
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02At a glance
03Original abstract
Self-directed home and community based services (HCBS) waiver services and supports for people with intellectual and developmental disabilities (IDD) have become a viable and widely used method of service provision in the United States. Grounded in theories of self-determination, previous literature on self-direction has suggested high satisfaction and positive outcomes for people who use self-directed programs as well as cost savings for state IDD service systems. This study explored the ways in which state IDD service administrators think about how self-direction may be used as a method of achieving cost savings while providing opportunities for people with IDD and their families to exercise choice and control. Informed by 54 high-level IDD service administrators in 34 states, and guided by a thematic analysis approach to data interpretation, the study found evidence that administrators typically see strong potential for self-direction to have cost-savings benefits, while also fostering choice. In the current political climate, the need for cautious fiscal stewardship may become a stronger driving force behind self-direction for people with IDD in the United States.
Intellectual and developmental disabilities, 2019 · doi:10.1352/1934-9556-57.2.158