Oregon's denial. Disabilities and quality of life.

In using quality of life as a guide to rationing health services, Oregon laid itself open to charges of bias against the disabled--charges that cannot be dismissed out of hand. Many observers were surprised, even stunned, by the Department of Health and Human Services' 3 August denial of Oregon's request for approval of its demonstration health plan for Medicaid. Admittedly the plan was gutsy and, for the United States, groundbreaking. To expand Medicaid coverage to more persons, 122 of 709 services (treatment-condition pairs) were excluded from coverage after a complex, many-layered process of surveys and public discussion about health care priorties.[1] But despite the plan's laudable extension of coverage to a wider segment of the state's low-income population, its most vigorous critics generally came from the political left; the plan, after all, made the poor the first targets of explicit rationing, and it did little to control provider fees or physician incomes. Predisposed toward state variety and experimentation rather than federal homogeneity and centralized national health programs, the Bush administration seemed poised to give it its blessing. The unexpected rejection letter from Louis Sullivan, Secretary of Health and Human Services, focused only on conflicts with the Americans with Disabilities Act (ADA).[2] It noted particular components of the prioritization process likely to contain bias against the disabled, especially the Quality of Well-Being scale[3] derived from a telephone survey ranking six functional impairments and twenty-three symptomatic conditions, and it cited specific statements in the primary report of the Oregon Health Services Commission. (Oregon's prioritization process is outlined at p. 22.) How cogent are these complaints? Is bias against the disabled inherent in the use of quality of life measurements to ration health services? Is the concern for people with disabilities only a smokescreen for the Bush administration's election-year reticence to admit that the problems with our health care system are so serious that explicit rationing may be the next order of the day? While I believe that the Oregon plan can be defended against the accusation that it is unfair to the poor,[4] and while the administration's complaints harbor some serious potential confusions, I will argue that the federal rejection notes a legitimate point of fundamental difficulty in any rationing scheme that gives quality of life measurement a significant role. Though the difficulty is not necessarily fatal, it should command thoughtful recognition. The Main Complaint Secretary Sullivan's main complaint is that the prioritized list of 709 condition-treatment pairs was "based in substantial part on the premise that the value of the life of a person with a disability is less than the value of the life of a person without a disability." He cited two segments of the prioritization process--the telephone survey and last-stage "hand adjustments" by commissioners. The Department of Health and Human Services claims that the quality of life data derived from the survey "quantifies stereotypic assumptions about persons with disabilities" by giving heavy weight to the responses of persons who had not experienced such conditions. The analysis accompanying Sullivan's letter quotes Oregon's own acknowledgment that "those who had experienced the problem did not feel it was as severe as those who had not experienced the problem."[5] It notes that Oregon's submissions did not deny the potential for bias in constructing the Quality of Well-Being scale out of the telephone survey; the state only claimed that the telephone survey's impact on the final list was "limited." In turn Sullivan cites Oregon's own statistical analysis that the survey had allowed 120 condition-treatment pairs to move at least thirty places on the final list, and more than fifty pairs to move at least fifty places. …