A movement has been growing since the early 1970s to enable patients to take control of their own care decisions. The Robert Wood Johnson Foundation (RWJF) joined this movement in the early 1990s, with a specific focus on empowering the disabled and chronically ill to choose their own long-term-care arrangements.

These efforts have been part of RWJF’s long-term, larger focus on improving the quality of care for the disabled and chronically ill. These consumer choice and education projects aim both to give consumers a vested interest in their care plans and ultimately to improve the quality of care.

This Topic Summary synthesizes Program Results on RWJF’s support for work that has pursued three strategies:

• Research on Consumer Decision Making—Before and after embarking on its major demonstration programs, RWJF supported several research projects that looked at similar programs and asked consumers how they make decisions about long-term-care arrangements and how much control they would like to have.
• Developing Models for Consumer Choice—RWJF has supported three large demonstration programs, Self-Determination for Persons with Developmental Disabilities, Independent Choices and the Cash & Counseling program, all of which fostered the development of consumer-directed long-term care. Those programs led in turn to a collaborative effort of the National Association of State Units on Aging and the National Council on Aging that together provided technical assistance and mini-grants to 13 states to create consumer-directed services.
• Consumer Education—Consumers need access to good information about long-term-care options if they are to make responsible decisions. Three projects published guides to long-term care to help consumers make good choices.