What We Know
Participant direction is a service model that transfers 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. Research has shown that 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. Participant direction is known
by numerous names including self-direction, consumer direction,
individualized funding, and self-determination.
What We've Done
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 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 helped or impeded them in
taking control, and the results of doing so.
Finally, we have also conducted a comprehensive literature analysis
of 53 documents related to participant direction. The analysis resulted
in a conceptual framework identifying and defining the various possible
components and indicators of participant direction in programs across
More information is available on our Families site on Participant Direction.