By Amanda Morris
September 26, 2023 at 11:00 a.m. EDT
For years, the National Institutes of Health has funded research on health inequities faced by racial, gender and other underserved communities. But one notable group was left out: people with disabilities.
Now, in a major victory for disability health advocates, the NIH has announced that it has designated people with disabilities as a “health disparity population.”
Disability advocates say the change reflects an ongoing shift in medicine from trying to “fix” or cure disabled people toward viewing them more holistically, as a demographic group with its own unique socioeconomic challenges.
“This is a big deal,” said Peter W. Thomas, co-coordinator of the Disability and Rehabilitation Research Coalition, which focuses on improving disability research. “This is going to focus more attention on getting people with disabilities the care they need and hopefully result in better outcomes for people with disabilities across the board.”
Earlier this month, the National Advisory Council on Minority Health and Health Disparities recommended against the move, citing concerns over the lack of a standardized definition for disability and the broad nature of the disability population which they said could overwhelm existing staff and budgeting at the NIH. However, there was immediate pushback from hundreds of disability organizations, advocates, researchers and health-care professionals and the council did not include that recommendation in their final report, which did not take a position on a designation.
Disability researchers disagreed with the initial logic of the council, noting that while it can be tricky to define disability, other already designated groups have their fair share of complexities too, said Jae Kennedy, professor of health policy and administration at Washington State University.
“Race is really complicated. Gender identity is really complicated,” he said. “And that is certainly not a good reason to ignore the population. If we want to be a healthier country and a more inclusive country we need to understand and develop policies to support this frequently ignored minority population.”
He expects the new designation to have ripple effects across universities and organizations that vie for NIH funding by encouraging them to think more about how to make their own workplaces and research projects more inclusive of disability.
… Continue reading the full article from the Washington Post.
