Identifying and Defining the Activities of Participant Direction Programs

Abstract

Nearly 11 million Americans, half of which are nonelderly, need long-term supports and services (Kaye, Harrington, & LaPlante, 2010), including personal assistance services, home and community-based services, and institutional services (Ng, Harrington, & Kitchener, 2010). The paid supports and services these individuals receive are funded primarily through Medicaid and are traditionally provided through agency direction models that provide little opportunity for participant decision-making regarding the services provided (Clark, Hagglund, & Sherman, 2008;O'Keeffe, Wiener, & Greene, 2005). Individuals are recipients of the agency's services and the agency generally recruits, hires, trains, schedules, manages, disciplines, and pays the service providers, determining provider wages and job tasks (Jamison Rissi, 2007).Conversely, participant direction models hold that individuals or their surrogate decision-makers (hereafter referred to as "participants") should "have the primary authority to make choices that work best for them, regardless of the nature or extent of their disability or the source of payment for services" (National Institute on Consumer-Directed Long-Term Services, 1996, p. 3). As such, service providers work for participants, and participants may have input or authority over multiple aspects of service delivery, including how money is spent, how and where services are implemented, and who provides them. However, there are many variations in these programs that blur the line that divides agency direction and participant direction programs.There is a "lack of clarity of what is meant by [participant] direction" (Infeld, 2005, p. 14), and no two programs are identical. Programs of participant direction vary in a myriad of ways: (a) number of participants enrolled (e.g., fewer than 100 participants to more than 5,000 participants; Doty & Flanagan, 2002), (b) disabilities of participants 502538D PSXXX10.

Examining the Experiences and Decisions of Parents/Guardians

“…In addition, considering the catalyst for choosing to participant direct the supports and services for adults with SIDD was directly related to the achievement of desired outcomes for the adult, an important question for future research would entail examining the barriers to accomplishing desired outcomes using agency-directed services. The respondents in this study had full employer and budget authority, which is not available in all programs of participant direction (Gross, 2010; Nadash & Crisp, 2005; National Council on Disability, 2004; Tritz, 2005). A study comparing outcomes for adults with SIDD across sites with different levels of authority to participant direct may provide even greater detail regarding what components of participant direction (i.e., hiring and managing service providers, allocating monies for services) actually facilitate accomplishment of improved quality of life outcomes.…”

“…Although consumers have increasingly received services in their homes or communities for the past few decades, the services have traditionally been agency directed. In agency-directed programs, the individual with a disability typically has little choice (“the act of making a selection from a range of options”; Gross, 2010, p. 3) or control (act of “making substantive decisions” and “taking responsibility” for them; Gross, 2010, p. 4) over the services received or who provides them (Doty, Mahoney, & Simon-Rusinowitz, 2007). More recently, however, ever-increasing numbers of states have begun offering adults with IDD or their surrogate decision makers (i.e., parents, guardians, other family members, friends) the opportunity to participant-direct the HCBS waiver supports and services of the adult (Breihan, 2007; Walker, Hewitt, Bogenschultz, & Hall-Lande, 2009).…”

“…In addition, sometimes there is variance in implementation within a state, as states are not required to offer participant direction on a statewide basis (CMS, 2005). Because there is no consensus on how this service model is implemented, multiple program designs of participant direction exist across and within states (Gross, 2010; Nadash & Crisp, 2005; Tritz, 2005).…”

“…Participant-direction programs vary not only by structure and organization but also by number of people served, years in place, funding sources used for services, services allowed to be consumer controlled, who can be hired, and how much support is provided to consumers in making these choices and ensuring that legal obligations are met (Doty & Flanagan, 2002; Gross, 2010). Some programs of participant direction only permit consumers to have employer authority (i.e., the authority to hire, fire, and train service providers; CMS, 2010).…”

Residential services for adults with intellectual and developmental disabilities.

“…Individuals and families who self-direct often pay higher hourly wages to DSPs, trading fewer hours of support for more dependable and longer lasting relationships with DSPs, and sometimes not offering certain benefits to DSPs who prefer compensation in the form of higher pay. As a result, studies have shown that self-directed models involve lower rates of DSP turnover (Gross et al, 2015;Timberlake et al, 2014). Using self-direction allows individuals and their families to more easily integrate the natural support of family and friends, and it is sometimes easier to arrange intermittent or temporary supports when they are needed because of the program flexibility (Melda et al, 2009).…”