Consumer Direction in Disability Policy Formulation and Rehabilitation Service Delivery

Disability is a natural part of the human experience. The ability to control one's existence is also an essential part of being human (National Institute on Consumer-Directed Long-Term Services [NICDLTS], 1996a). Many people with disabilities are often denied the opportunity to exercise choice and control over the most basic aspects of daily life. Consumer direction is an approach to the development of disability policy and delivery of rehabilitation services whereby informed consumers have control and the opportunity to make choices. In a consumer-directed system, individuals with disabilities assess their own needs, determine how and by whom these needs should be met, and monitor the quality of services received. Consumer direction can exist in differing degrees and may span many types of services. It ranges from the individual independently making all decisions and managing services directly to the individual using a representative to manage services (Kosciulek, 1997). The unifying theme in CD is that individuals with disabilities have the 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 (NICDLTS, 1996a). Consumer choice and control are both prerequisites for an effective consumer-directed rehabilitation service delivery system (Dart, 1992; West & Parent, 1992). Currently in American society, people with disabilities, as a group, remain poorer, less educated, and less employed than the population in general (Kosciulek, 1998; National Council on Disability, 1996). Higgins (1992) asserted that the problems faced by people with disabilities can be viewed as the consequences of the failure of social institutions that have been constructed to deal with a narrower range of variation than is in fact present in the disability population. Likewise, Szymanski and Trueba (1994) emphasized that at least some of the difficulties faced by people with disabilities are not the result of functional impairments related to the disability, but rather are the result of discriminatory processes embedded in societal institutions for rehabilitation and education and enforced by well-meaning professionals. Those individuals whose mobility, communication, medical needs, or cognition differs from social norms find themselves confronting institutions not well suited to meet their abilities and potential (Scotch & Schriner, 1997). Given the current status of people with disabilities in American society, the purpose of public disability policy and rehabilitation service delivery must be to enhance the quality of life of people with disabilities. Empowering people with disabilities to have control over the policies and practices that directly affect their lives can achieve this important objective. People with disabilities must play the central role in directing the disability policy formulation and rehabilitation service delivery that is central to their empowerment. Underlying Assumptions of Consumer Direction Three underlying assumptions of CD are presented to set the framework for a more specific discussion of the conceptual framework of CD. Consumer-directed disability policy and rehabilitation programming should be based on the presumption that consumers with disabilities are the experts on their service needs. An informed consumer is the best authority on what his or her service needs are, how these needs are best met, and whether these needs are being met appropriately. The consumer should be presumed competent to direct services and make choices, regardless of age, or the nature or extent of disability (NICDLTS, 1996a). Choice and control can be introduced into all service delivery environments. Systems can be designed to include a variety of options that cater to diverse groups of consumers, whether they wish to exert total control over services or very little control. The model of disability as human variation (Scotch & Schriner, 1997) considers disability as introducing complexity and disequilibrium into service systems. …