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The Consumer's Perspective
Individuals with disabilities constitute a marginalized group in health services research, and their experiences within the health-care system are not well understood. This article examines the access barriers to primary, specialist, and rehabilitative care, and their consequences for individuals' health, functioning, well-being, and health services utilization. The findings are based on an in-depth analysis of 30 qualitative interviews. Access problems are grouped into environmental, structural, and process barriers. The findings highlight the complex nature of access barriers for people with disabilities and underscore the importance of disability literacy in the health service delivery process.
The last three decades can be characterized as an era of rising health-care costs and, at the same time, rising expectations for all Americans to have access to quality health-care services that are delivered in a cost-effective manner. As a result, diverse stakeholder groups, including policymakers, researchers, payors, providers, and consumers, have grown increasingly united in their desire to improve access for every citizen.
This article delineates the scope and the nature of specific barriers people with disabilities face in obtaining needed health-care services. Access is generally defined as the use of services relative to the actual need for care; lack of access occurs when there is a need for services but those services are not utilized (Aday, 1975). Barriers to access are those factors that contribute to preventing a person from utilizing a service when needed. Although many of the health-care needs of individuals with disabilities are similar to those of people without disabilities, the presence of a disabling condition can place the individual at greater risk for secondary conditions, higher utilization of downstream services, increased need for durable medical equipment, functional decline, decreased independence, and psychological distress than is found in the general population (Sutton & DeJong, 1998).
An improved understanding of how consumers with disabilities experience these barriers is a first step toward eradicating access disparities between individuals with disabilities and their nondisabled counterparts in the current health-care environment (Gold et al., 1997; Wholey, Burns, & Lavizzo-Mourey, 1998). Existing disparities in health-care access based on minority status (Collins et al., 2002; Fiscella, Franks, Doescher, & Saver, 2002; Park & Buechner, 1997), health status (Beatty & Dhont, 2001), and rural rather than urban dwelling...