Identifying and Defining the Structures That Guide the Implementation of Participant Direction Programs and Support Program Participants

Abstract

Participant direction (PD) programs offer the individual with a disability or his/her surrogate decision maker varying degrees of choice and control over the individual's supports and services.We conducted a document analysis using grounded theory methods to identify the design elements of participant direction programs in long-term care. We analyzed 53 documents across multiple disabilities and funding sources. We identified and defined two major components of The need for long-term care supports and services is growing (Kaye, Harrington, & LaPlante, 2010). Long-term care refers to the supports and services needed to meet individual care and assistance needs over an extended or ongoing period of time for those who are unable to be fully independent. Traditionally, publicly paid long-term care has been provided through an agency direction model in which the individual with a disability has minimal input regarding the decisions made and the services provided to meet his or her needs (Clark, Hagglund, & Sherman, 2008;Jamison Rissi, 2007;O'Keeffe, Wiener, & Greene, 2005). In agency direction, the agency typically draws down the money from the benefit source (e.g., Medicaid); service providers are employed by the agency, and the individual is a recipient of the agency's services. The agency typically is the employer of the service providers and assumes the responsibilities of recruiting, hiring, training, scheduling, managing, disciplining, and paying the service providers.By contrast, programs of participant direction offer the individual or his/her surrogate decision maker (hereafter collectively referred to as "participants") varying degrees of decisionmaking authority. Decisions may include deciding what goods and services are purchased, how and where they are implemented, and by whom. Programs are premised on the belief that participants should be primarily responsible for directing their supports and services, regardless of disability or extent of support needs (National Institute of Consumer-Directed Care Services, 1996). However, the distinction between agency direction and participant direction programs is not black and white; rather, it is characterized by shades of gray. Variation in Programs of Participant DirectionIn 2001 State of Existing ResearchA number of studies on participant direction, using both qualitative and quantitative methods (Beatty, Richmond, Tepper, & DeJong, 1998;Benjamin & Matthias, 2000;Caldwell, 2006;Caldwell & Heller, 2003;Caldwell & Heller, 2007;Clark et al., 2008;Doty, Benjamin, Matthias, & Franke, 1999;Foster, Brown, Phillips, Schore, & Carlson, 2003;Foster, Brown, Phillips, & Carlson, 2005;Heller, Miller, & Hsieh, 1999), have focused on topics specific to individual or family caregiver outcomes, including: (a) satisfaction with services, (b) existence of 4 PARTICIPANT DIRECTION unmet needs, (c) physical well-being (e.g., health and safety), (d) emotional well-being, (f) financial well-being, (g) community integration, (h) general quality of life, (i) satisfaction wit...