Disability advocates are calling on the Biden administration to intervene after a government advisory panel killed a plan to devote more resources to address persistent disparities people with disabilities face in the health care system.
Earlier this month, the National Advisory Committee on Minority Health and Health Disparities at the National Institute on Minority Health and Health Disparities rejected a plan to designate people with disabilities as a health disparity population.
The move was a blow to advocates who thought the designation would help chip away at discrimination routinely experienced in the medical field. The designation would allow the National Institutes of Health to fund research specifically focused on the health care disparities experienced by people with disabilities, while also encouraging the recruitment of researchers and research participants with disabilities.
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Now dozens of groups, including the Disability Rights Education and Advocacy Fund, the National Disability Rights Network, the Autism Society of America and Autism Speaks, are calling on U.S. Health and Human Services Secretary Xavier Becerra to ignore the committee’s decision.
“We share concerns that this is inconsistent with the administration’s commitment to people with disabilities, undermines NIH’s current Diversity, Equity, Inclusion and Accessibility (DEIA) efforts, does not take into account current models and theories on disability, and does not reflect the perspectives of people with disabilities,” the groups said in a letter to Becerra.
In particular, the groups argued that all of the criteria for designating people with disabilities as a health disparities population have been met, that the recommendation “undermines” current diversity and equity efforts at NIH and within the Biden Administration, and that the decision is “based on ableist assumptions and biased views of disability.”
Currently, NIH recognizes racial and ethnic minority groups, people of low socioeconomic status, underserved rural areas, and sexual minority groups as health disparities populations.
In rejecting the proposal to add disability to the list, the committee cited concerns about the lack of a standardized definition of what counts as a disability and the possibility that the limited staff and budget dedicated to such efforts could be “overwhelmed” by the influx of applications from this “broad and diverse” population.
Instead, the committee said more research is needed to assess which disabled populations in particular are affected by health disparities, and it supported establishing a separate office for disability research at NIH.
The department did not respond to questions from Disability Scoop about the incident, but Eliseo J. PĂ©rez Stable, director of the National Institute on Minority Health and Health Disparities, posted a message on the department’s website on Monday.
“It is important to note that the Council’s recommendations are advisory only and no decisions have been made,” Perez Stable wrote. “Once the final report is available, we intend to make a final decision in consultation with the Commissioner of the (Agency for Healthcare Research and Quality) based on the working group’s analysis, stakeholder input, and review of the science and evidence.”
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