NCD celebrates NIH decision designating disability as a demographic

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September 26, 2023

WASHINGTON—Today the National Council on Disability commends the National Institutes of Health for the decision to designate people with disabilities as a health disparity population, consistent with NCD’s policy advice to them over the last two years.

This morning, National Institute on Minority Health and Health Disparities (NIMHD) Director Eliseo J. Pérez-Stable, M.D. announced a decision designating people with disabilities as a population with health disparities for research supported by the National Institutes of Health.

The decision comes after nearly two years of NCD advising NIMHD of the need for the designation, which helped galvanize and buoy others’ efforts for the same.

“NCD celebrates this designation as a significant victory for people with disabilities,” said NCD Chairman Andrés Gallegos. Finally, NIH recognizes people with disabilities as a demographic, and NIH attention and funding can rightly focus on researching solutions to the health disparities that too many of us have experienced for far too long–this is great news.”

NCD as an independent federal agency making recommendations to the President, Congress and federal agencies on national disability policy had a role in making the change a reality.

In December 2021, NCD sent a formal request to the directors of NIMHD and the Agency for Healthcare Research and Quality (AHRQ), for a designation of people with disabilities as a health disparity population. The letter contained an 11-page summary of decades of research documenting the health disparities experienced by people with disabilities to justify such a designation.

In February 2022, NCD released its Health Equity Framework, calling for this designation, and presented the Framework to attendees at a March 2022 U.S. Department Health and Human Services Healthcare Accessibility Workgroup meeting, hosted by the Centers for Medicare and Medicaid Services (CMS) Office of Minority Health.

NCD shortly thereafter met with the directors of NIMHD and AHRQ in May 2022 to discuss the need for the designation.

In the fall of 2022, NIMHD created an advisory group to specifically examine the evidence on health disparities and make a recommendation on the health disparities population designation in one year.

NCD made a formal presentation to the NIMHD advisory group for health disparities population designation in December 2022 and followed up in early 2023, providing further documentation on disability bias and stigma in relation to healthcare.

Following a presentation of the NIMHD advisory group of its findings and recommendations in early September 2023, NCD again followed up with a letter to Director Pérez-Stable this month, again urging the Director to make the amply justified designation.

Today’s announcement came on the 50th anniversary of the Rehabilitation Act of 1973 being signed into law, adding significance to what was a celebration of the first civil rights legislation for people with disabilities and precursor for future disability rights protections, including the Americans with Disabilities Act of 1990, which NCD recommended and originally drafted.

Learn more about the National Council on Disability at www.ncd.gov.

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