What We Know
A silent 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 own policies. It rests on the proposition that outcomes for the person and family or other caregivers are better and obtained at 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 are interviewing policy leaders, agency administrators, and consumers in Kansas and North Carolina to determine how they are responding to or are affected by the silent revolution. We are learning 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 begun 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. We also are creating a web-based Community of Practice on individual and family control of Medicaid and other benefits.
More information is available on our Families site on Individual and Family Control of funding.