The Organization and Financing of Health Services for Persons with Disabilities

O ver the last 30 years, the nation has witnessed a material change in the status of Americans with disabilities: no longer are they at the periphery of American political and social life but now are increasingly represented in the mainstream of American community life. What started almost as a quixotic social movement in the early 1970s has matured into a social and political force that has altered how most Americans view individuals with disabilities. The most widely known achievement of the movement is the 1990 Americans with Disabilities Act, commonly referred to as the “civil rights act for individuals with disabilities.” Despite these successes and a decade of strong economic growth, people with disabilities lag behind in many areas of American life, especially employment and health care. About half of working‐age individuals with disabilities report that they are not working, and for those persons with the most severe disabilities, this proportion is 69 percent ( U.S. Department of Commerce 2001 ). Americans with disabilities are rarely considered a distinct group of health care users in the same way as are older Americans, children, racial and ethnic minorities, and others who are perceived to have different needs and access issues. Indeed, to some extent individuals with disabilities overlap with all these groups. But they also have distinct needs with material implications for the organization, delivery, and financing of health care services. Despite the disproportionate health care needs and expenditures of many‐‐‐though not all‐‐‐individuals with disabilities, the mainstream health services research community has largely neglected them. This article outlines the most pressing health service research issues in addressing the health care needs of individuals with disabilities.