Participant direction is a service delivery model that transfers a significant amount of control over funds for supports and services away from service providers and traditional for-profit or not-for-profit agencies to individuals with disabilities and their families. Participant direction is known by numerous names including self-direction, consumer direction, individualized funding, and self-determination.
Promoted through federal policy initiatives, many states and local areas have policies and practices that enable individuals, with support from family and friends, to exercise control over some or all of their supports and services and the budget of funds allocated for their services. Medicaid is the primary source of funding for participant direction of long-term care supports and services. Exercising participant direction over services and funding usually includes developing a person-centered plan, developing a budget and spending plan, serving as the employer of record (e.g., recruiting, hiring, supervising and scheduling support staff), identifying and purchasing needed goods and services, and working with a support team which may include a case manager, support broker, fiscal intermediary, and family and friends.
Research has shown that allowing an individual and/or family control of funding and services typically results in better outcomes for the person and family or other caregivers. We have studied the impact of the policies and practices associated with participant direction on individuals and their families and the various roles and responsibilities associated with it.
From 2005-2007, we interviewed policy leaders, agency administrators, service providers, and consumers in North Carolina to determine how they were implementing a 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, how they are managing the change, what 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.
From 2007-2008, we have conducted 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 supported or impeded them in taking control, and the results of doing so.
Finally, in 2008-2010, we conducted a comprehensive literature analysis of 53 documents related to participant direction. The analysis resulted in a theory of the organizational construction of programs of participant direction and a conceptual framework identifying and defining the various possible components and indicators of participant direction in programs across the country.
Find out more about participant direction of Medicaid funding in funding sources and supports and services.