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Monday, September 18, 2023

Health Disparity

From Disability Rights Education & Defense Fund (other signers include Autism Speaks, the Autism Society, and the Autistic Self Advocacy Network):
Along with 174 organizations and individuals, DREDF joined a letter to protest a recent decision by an Advisory Committee of the National Institutes on Minority Health and Health Disparities (NIMHD) to not recognize people with disabilities as a health disparity population across the National Institutes of Health (NIH). Such recognition would allow NIH funding to go toward projects that explicitly include a focus on disability health disparities. It would also incentivize efforts to recruit researchers with disabilities and people with disabilities as participants in clinical research. Instead, NIMHD adopted a Working Group’s recommendation to develop and fund an “Office of Disability Research” to identify and work on what the Working Group saw as research “gaps.” The Working Group members were appointed by NIMHD, and did not include any person who openly identified as a person with disabilities. As a result of this decision, the disability community will continue to be denied the tangible benefits and tools that would help end longstanding and preventable barriers, stigma, and bias that deny optimal health to individuals with disabilities.

NIMHD’s given reasoning for its rejection, released barely a week before the proposed Section 504 rule was made public, is based on ableist assumptions about disability that are apparent in both the September 1, 2023 Working Group’s presentation and NIMHD’s discussion following the presentation (approximately l20 minutes beginning at the 3:57 hour mark). The Working Group seemed stymied by the reality that disability arises from different causes, and can medically manifest in different ways, occur at different times, and progress at different rates.

The lack of a single widely accepted definition of disability was seen as a “key gap” because NIMHD could not identify beforehand who would be affected by designating people with disabilities as a health disparity population. The Working Group also defined health disparities as “preventable differences in the burden of disease, injury, violence, or in opportunities to achieve optimal health . . .”, and then stated that “not all health differences in individuals with disabilities meet the criteria of a health disparity.” The Working Group insists on an “all or nothing” approach, which apparently requires all health differences between disabled persons and non-disabled persons to be a preventable difference. This problematic application of the definition of health disparity shows NIMHD’s bias toward separating those who have a disability or chronic condition from those who experience health disparities.

One of the most powerful lessons of Section 504, and a fundamental motivation for the development of a modern cross-disability rights movement in the 70s, was the understanding that the presence of disability invoked a common discriminatory response and could therefore be fought using common legal tools and advocacy. This lesson was patently lost on NIMHD and the Working Group, which seemed unable to recognize that multiple common factors keep people with disabilities from getting equitable and effective healthcare. For the NIMHD, the well-documented impact of healthcare barriers, bias, and discrimination was lost in the specifics of individual diagnoses and medical definitions.

In the end, the Working Group concluded that there were more than twice as many risks as benefits arising from designating people with disabilities as a health disparity population. They called attention to a “high potential for mission creep and loss of focus at NIMHD” because its limited budget and staff could be overwhelmed by funding applications from such a “broad and heterogeneous population.” The Working Group decided to recommend that NIMHD establish a separate Office or Institute focused on disability research that would have a distinct budget.

This recommendation, which was accepted by the NIMHD Advisory Committee, essentially calls for segregated disability health and healthcare disparities research. Lip service was given to the need for “a greater emphasis on the intersection of disabilities and existing populations with health disparities, but it is completely unclear who would lead an intersectional effort or how research efforts would be coordinated among NIMHD and a newly created office. The Advisory Committee’s decision also fails to specify why the Working Group’s recommendations for forming a separate Office of Disability Research could not be carried out after people with disabilities receive designation as a health disparity population.

Even as we recognize Secretary Becerra and his team for getting so much right about the proposed update to the Department of Health and Human Services (HHS) Section 504 rule, we call on the Secretary to further reaffirm the principles of nondiscrimination, full inclusion of people with disabilities, and commitment to health equity by recognizing people with disabilities as a health disparity population.