The Autism Society Event and Education Recordings Archive

Medicaid policy promotes the participation of consumers in the direction of supports and services (Centers for Medicare and Medicaid Services, 2005). State Medicaid agencies may develop service programs that allow consumers to exercise choice and control over the supports and services received through Home and Community Based Services waivers. CMS calls this concept of consumer choice and control "participant direction." Many terms and characteristics are used to describe participant direction in the professional literature (e.g., self-determination, consumer control, self-direction, individualized funding, individual budgets, person-directed [Turnbull & Turnbull, 2006]). In addition, there are multiple ways to implement participant direction. Participant direction is most frequently used within the confines of the Medicaid program (e.g., state plans and waiver programs), which is funded and administered by both federal and state authorities (National Council on Disability, 2004). Within federal guidelines, each state has the latitude to determine populations served, services offered, and degree of choice and control extended to benefits for consumers in directing their own supports and services (Nadash & Crisp, 2005). Because each state has the latitude to determine its own program of participant direction (i.e., who can control how much of what supports and services), it is not the same across states. Also, there is often variance in implementation within a state, as states are not required to offer participant direction on a statewide basis (CMS, 2005). Therefore, multiple models of participant direction exist across and within states (Nadash & Crisp, 2005).

Some models of participant direction only permit consumers to have employer authority (i.e., the authority to hire, fire and train service providers [CMS, 2005]), while others allow consumers to also have budget authority (i.e., the authority to develop an individualized budget). Since no two models of participant direction are identical, each allows its consumers different levels of choice and control. Although research on the various programs of participant direction has revealed positive outcomes for those directing their supports and services (e.g., Caldwell, 2006; Caldwell & Heller, 2003; Heller, Miller, & Hsieh, 1999; Head & Conroy, 2005; Mathematica Policy Research, Inc., 2007; Powers, Sowers, & Singer, 2006), outcomes are limited in their generalizability. Research on programs offering participant direction typically reflects the terms and confines of a specific state policy and/or local program of implementation. With no universal model of participant direction, research conducted on the outcomes associated with participant direction reflects only outcomes associated with specific programs of implementation.

The purpose of this qualitative study was to identify and operationally define the components and indicators of participant direction described in (a) professional literature and (b) interviews with individuals involved (providing and receiving services) in programs of participant direction. A grounded theory was developed from the findings of both stages of this study. The grounded theory is presented in a conceptual framework identifying the “what” (i.e., various activities) and “how” (i.e., supports) in programs of participant direction. This framework is the preliminary step in the development of a tool to assess an individual’s level of participant direction of supports and services, which will allow future research to move beyond program- specific outcomes to more generalizable outcomes.