County Administrator Perspectives on the Implementation of Self-Directed Supports

Abstract

Services and supports for people with intellectual and developmental disabilities (IDD) have undergone a significant transformation in the past 40 years. The momentum for this transformation has been fueled by changing societal views of people with disabilities and advocacy by people with IDD and their families. Furthermore, systems changes have reformed the way in which supports are provided and funded to promote choice and control for people with disabilities and their families. One such apparatus for providing individual choice in the provision of services is self-directed supports (also known as consumer directed or participant directed).Self-directed supports are a program or service option in which people with IDD, their families, and their allies directly manage their supports. In this service option, people with IDD and their families use individually set and controlled budgets to select, purchase, and manage their own supports within an established framework of guidelines (Alliance for Self-Determination, 1999;Nerney & Shumway, 1996;Scala & Nerney, 2000). In this model, individuals and families typically recruit, hire, and manage their own direct support workers (Moseley, 2001).This service option is widely available across the United States. A recent study identified 34 states that currently offer some type of self-direction of individual budgets and/or increased individual control of financial benefits for people with IDD and their families (Walker, Hewitt, Bogenschutz, & Hall-Lande, 2009). Self-directed supports offer numerous benefits to people with disabilities, their families, communities, and society, perhaps the greatest of which is increased control and choice. However, these services also can present implementation challenges.

Implementation of Self-Directed Supports for People With Intellectual and Developmental Disabilities in the United States

“…Across all states, administrators described a desire to increase program size, and as a result, the recruiting component of the case manager relationship took on added significance. Studies of both county-level (Hall-Lande et al, 2012) and state-level (Walker et al, 2009) administrators echo the importance of having “buy-in” from case managers, and that dissatisfied or negatively disposed case managers can limit access to self-direction by simply not mentioning it to potential participants. Moreover, case managers who harbor concerns or misconceptions about self-direction may not present accurate information out of fear for their clients’ safety (Crisp et al, 2010).…”

“…Self-determination was also defined by administrators, in part, as requiring responsibility by people with IDD and their family members. The importance of accountability or responsibility in self-direction is well-grounded in previous studies of program administrators on the state and county level (Hall-Lande et al, 2012;Walker et al, 2009). Furthermore, Nerney's (2005) value-based definition of self-determination includes responsibility as a core value of self-determination, alongside freedom, authority, support, and confirmation.…”

“…Semi-structured interviews. The semi-structured interview protocol was based on the results of the document review, an extensive review of the literature, as well as previous investigations of county-level administrators (see Hall-Lande, Hewitt, Bogenschutz, & LaLiberte, 2012). The interview protocol was developed by members of the research team and was reviewed and revised based on feedback from researchers at another university, as well as an expert review panel of staff from NASDDDS.…”

Family well‐being in a participant‐directed autism waiver program: the role of relational coordination

“…The philosophical orientation of participantdirection 'rests on the recognition that people with disabilities should not be forced to give up their basic civil rights in order to obtain support' (Moseley 2001). This principle has been translated into practice with the creation of programs or service options in which individuals with disabilities or their families actively and directly manage and design their supports (Caldwell & Taylor 2006;Hall-Lande et al 2012). Fundamental elements of participant-direction include person-centred planning, individual budgeting and quality assurance and improvements (Smith et al 2007;Walker et al 2009).…”

“…This principle has been translated into practice with the creation of programs or service options in which individuals with disabilities or their families actively and directly manage and design their supports (Caldwell & Taylor ; Hall‐Lande et al . ). Fundamental elements of participant‐direction include person‐centred planning, individual budgeting and quality assurance and improvements (Smith et al .…”