Transition to adulthood and participant direction over Medicaid and state funds

What We Know

A revolution is underway in the field of developmental disabilities. It seeks to transfer a significant amount of control over Medicaid funds from service providers and traditional for-profit or not-for-profit agencies to individuals with disabilities and their families.  It is based on federal policy and supported by some states through their state specific policies. Allowing an individual and/or family control of supports and services typically results in better outcomes for the person and family or other caregivers. In addition, supports and services are often obtained at a lower cost when the consumer has greater control to determine whom to hire, at what rates, for what services, and with what accountability.

What We're Doing

We interviewed policy leaders, agency administrators, service providers, and consumers in Kansas and North Carolina to determine how they are responding to or are affected by this shift from an agency-directed service model to a participant-directed service model.  We learned why they favor or do not favor the trend to transfer control, why and how they act to transfer control (or not), what federal and state policies and practices advance or impede the transfer of control, and how even a small (or large) amount of transferred control affects families' quality of life and community integration. 

We also have a national effort — the  Pioneer Families Project — to identify the families who have taken more control over their lives to learn what they did, why they did it, what helped or impeded them in taking control, and the results of doing so. 

More information is available on our Families site on Participant Direction.