Community-Based Participatory Research in Disability and Long-Term Care Policy

From 1997 to 2003, Illinois was spending approximately 80% of its long-term care budget on nursing homes and institutional care and was facing significant challenges to its long-term care delivery and the need to rebalance toward community-based supports for people with disabilities. A case-based program evaluation was done to analyze Moving Out of the Nursing Home to the Community, a community-based participatory research (CBPR) project. The Chicago-based project documented the experiences and concerns of 200 disabled people attempting to transition out of nursing homes to least restrictive community living, actively involving participants in an empowerment and systems and policy change program. The authors describe the partnership between the University of Illinois at Chicago and two centers for independent living; the project's research, policy-related goals, and activities; and the outcomes realized. Barriers and facilitating factors to long-term care systems change are described, as are implications for other CBPR partnerships focused on disability public policy.