Identifying and Defining the Activities of Participant Direction Programs

We analyzed the design of various U.S. programs of participant direction offering participants (individual with a disability or his or her surrogate decision-maker) some level of choice and control over the individual’s long-term care supports and services. We used grounded theory methods to conduct a document analysis of 53 documents published from 2004 through 2008 representing multiple disabilities and program funding sources. In our analysis, we identified three major components (planning, budgeting, and employing) over which participants had the opportunity to exercise choice and control and the activities associated with each. Activities were represented by one or more continua illustrating the range of participant choice and control over the indicator. The component of planning consisted of the activity of care plan development. The budgeting component included the activities of (a) development, (b) individualization, and (c) authority. The employing component included the activities of (a) identifying/selecting providers, (b) hiring/employing providers, (c) scheduling providers, (d) training providers, (e) managing/directing/supervising providers, (f) disciplining/dismissing providers, (g) keeping records, (h) managing payroll, (i) locating emergency back-up, and (j) monitoring service quality. The findings of this study have implications for improving policy, practice, and research in the field of long-term care.