Facing outcry from disability advocates, the National Institutes of Health announced it would move forward with a plan to devote more resources to eliminating health care disparities for people with disabilities.
The agency announced this week that it will officially designate people with disabilities as a health disparity population.
According to the NIH, this classification applies to populations that “experience substantial disparities in disease, morbidity, mortality, or survival rates as a result of social disadvantage, compared with the health status of the general population.”
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Disability advocates argue that the classification would pave the way for funding research into disparities experienced by people with disabilities and encourage the recruitment of disabled researchers and research participants.
“This designation recognizes the importance and need for research advances to improve our understanding of the complexities that lead to health disparities and multi-level interventions,” Eliseo J. PĂ©rez Stable, PhD, director of the National Institute on Minority Health and Health Disparities, said in the announcement.
The move comes just weeks after an advisory committee voted against adding people with disabilities to the health disparities population list. The committee was concerned about the lack of a standardized definition of a disability and said that limited staffing and funding for such an effort could be “overwhelmed” by applications from such a “broad and diverse” population.
In response, more than 100 advocacy groups and organizations pressured the Department of Health and Human Services to reverse the recommendation, arguing that people with disabilities meet all the criteria for a health disparities population and that the decision was “based on ableist assumptions and biased views of disability.” They also noted that a different NIH advisory group made the opposite recommendation last year.
The NIH appears to have acknowledged the backlash in its latest announcement.
“To the disability community, we have heard you and thank you for sharing your experiences with NIH,” said NIH Acting Director Lawrence A. Tabak. “This designation marks an important step in our agency-wide efforts to advance health equity for people with disabilities.”
The NIH noted that people with disabilities frequently face conditions that lead to poorer health and shorter life spans, a situation that is often exacerbated by discrimination in the health care system. The situation is even worse for people with disabilities who also belong to other groups that face greater health disparities, the agency said.
In addition to disabilities, NIH already recognizes racial and ethnic minority groups, people of low socioeconomic status, underserved rural areas, and sexual minority groups as health disparity populations.
The decision to add people with disabilities to this group comes as NIH is also considering changing its mission statement to address concerns that its current one reinforces “ableist beliefs” that people with disabilities are “defective” and need to be “fixed.”
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