Who’s in Charge? A Review of Participant Direction in Long-Term Care

In recent years, the provision of long-term care in the United States has continued its movement from what was once a predominantly institutionally based system of care to one in which recipients can increasingly receive a range of both medical and supportive services at home and in the community. As the availability of home and community-based services (HCBS) grows, so does interest in consumer- or participant-directed models of service delivery. Participant direction is grounded in a philosophy of self-determination that seeks to maximize consumer autonomy and choice and ensures that persons with disabilities are empowered to live as independently as possible. In its purest form, participant direction shifts both choice and responsibility to the recipient; the consumer of services becomes his or her own case manager, deciding which services are needed, when and how they are delivered, and by whom. This approach challenges the assumption that physical, mental, and cognitive health conditions mean that people are unable to express their preferences and decisions about the services they receive and the ways in which they conduct their lives ( Benjamin, 2001 ).