Volume 80 Number 2, 2002
Assessing the Field of Disability Research
1. The Organization and Financing of Health Services for Persons with Disabilities
Gerben DeJong, Susan E. Palsbo, Phillip W. Beatty, Gwyn C. Jones, Thilo Kroll, and Melinda T. Neri
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.
2. Health Services Research for Children with Disabilities
James M. Perrin
Growing numbers of children and adolescents have long-term disabilities. Research on the epidemiology, clinical care and its improvement, organization, and financing of care for children with disabilities is very limited. Given the cost burden of the nation's chronic diseases and disabilities, the lack of investigation into necessary clinical activities seems remarkable. This article reviews recent research on health services relating to children and adolescents with disabilities and outlines a research agenda in clinical and health services for this population in these study areas.
3. Uses of Evidence in Disability Outcomes and Effectiveness Research
Alan M. Jette and Julie J. Keysor
Outcomes and effectiveness research is a category of health services research that gauges how well the health care needs of persons with disabilities are being met. Using Patrick's Model of Health Promotion for people with disabilities as a framework for analysis, this article examines outcomes and effectiveness research related to the health care needs of persons with disabilities. The three most pressing research priorities are clear theoretical conceptualizations and qualitative research on health outcomes relevant to the needs of persons with disabilities; a systemic analysis of existing assessment instruments' utility for disability outcomes research; and the development and testing of new outcome instruments.
4. Using Administrative Data to Study Persons with Disabilities
Lisa I. Iezzoni
Administrative data result from administering health plans—tracking service utilization, paying claims, monitoring costs and quality—and have been used extensively for health services research. This article examines the strengths and limitations of administrative data for health services research studies of people with disabilities. Administrative data offer important advantages: encompassing large populations over time, ready availability, low cost, and computer readability. Questions arise about how to identify people with disabilities, capture disability-related services, and determine meaningful health care outcomes. Potentially useful administrative data elements include eligibility for Medicare or Medicaid through Social Security disability determinations, diagnosis and procedure codes, pharmacy claims, and durable medical equipment claims. Linking administrative data to survey or other data sources enhances the utility of administrative data for disability studies.
