Implications of Consumer Direction for Disability Policy Development and Rehabilitation Service Delivery

Abstract

People with disabilities too often are denied the opportunity to exercise control over the most basic aspects of daily life. Consumer direction (CD) is a philosophy and an orientation whereby informed consumers have control over the policies and practices that directly affect their lives. It is a mechanism by which individuals with disabilities can develop the skills to take control of their lives and their environment. The primary tenet of this paper is that increased CD in disability policy development and rehabilitation service delivery will lead to increased community integration, empowerment, and quality of life for people with disabilities. In this paper, the concept is presented as a guide for disability policy development and rehabilitation service delivery. Consumer choice, the current status of people with disabilities in U.S. society, and the need for CD are discussed. An overview and definition of CD are presented, and the underlying assumptions are described. A conceptual framework, issues surrounding measurement and operationalization, and five examples of CD are presented. Finally, the implications of CD relative to consumer and service provider roles, the empowerment of people with disabilities, and potential benefits are discussed.If people with disabilities are to experience personal satisfaction and quality of life, they must play the central role in directing the disability policy development and rehabilitation service delivery that are central to their empowerment. To empower a person is to provide him or her with the opportunity to make choices and decisions regarding his or her life. Choice and control are highly valued prerogatives that reflect the autonomy, identity, and independence of an individual (Condeluci, 1987). The right to make choices, express preferences, and exercise control over life issues are critical ingredients for empowering and enhancing the quality of life of persons with disabilities (Kiernan & Hagner, 1995).Unfortunately, people with disabilities too often are denied the opportunity to exercise choice and control over

Developing consumer-directed care for people with a disability: 10 lessons for user participation in health and community care policy and program development

“…[19][20][21] As a result, user involvement has been mainstreamed and many of the governance structures within the administration of health and social care have been replaced by programmatic approaches that transfer to users more direct control over the services they receive. 7,[22][23][24][25] Box 2 provides a summary of useful US-focussed resources that have emerged in the social care context.…”

“…In many health and social care programs, public participation is often restricted to the operational level where users can only influence the service mix they receive and user input into program design and policy making is often minimal. 4,[7][8][9][10][11][12] This is understandable. The transition to a more participatory mode of program and policy development requires a fundamental shift in professional practice and takes time and sustained effort.…”

“…[1][2][3][4][5][6][7] This makes a lot of sense. Indeed, a growing body of research evidence suggests that actively engaging users in the program and policy design process leads to better policy outcomes.…”

Supporting People With Disabilities in Managing Individual Budgets

“…In practice, self-directed long-term care translates into individuals assessing their needs and determining how to meet these needs (Kosciulek, 1999;National Institute on Consumer-Directed Long-Term Services, 1996). Specific self-directed options, however, differ in the level of flexibility or choice participants could exercise.…”

“…First, the deinstitutionalization of people living in nursing homes or other residential long-term care facilities has increased the demand for community-based services (Benjamin, 2001;Powers, Sowers, & Singer, 2006). Because more people with long-term care needs have returned to community settings, the independent living movement has successfully advocated for consumer control over their services (Benjamin, 2001;DeJong, Batavia, & McKnew, 1992;Kosciulek, 1999;Shapiro, 1993). Moreover, the nonmedical and individualized nature of personal care provides an intuitive argument for leaving decisions regarding such care to the care recipients (Benjamin, 2001).…”