National Institutes for Health designates people with disabilities as a health disparity population

by Dorothy Hiersteiner | October 5, 2023
Categories: Announcements

Date: 09/2023

Author(s): Val Bradley, President Emerita, Human Services Research Institute

On September 26, 2023, the 50th anniversary of the Rehabilitation Act, the National Institutes for Health formally designated people with disabilities as a population experiencing health disparities. For many years, the disability community has advocated for this designation, which is crucial to expanding disability-related research opportunities funded by the National Institutes of Health.

The long-overdue designation is a major step forward after years of health inequities, particularly during the COVID pandemic.  The pandemic exacerbated challenges that people with disabilities faced before COVID including inaccessible services, lack of transportation, and stigma and discrimination from health care workers.  The National Council on Disability issued a report in 2021 that included overwhelming evidence regarding the disparities faced by people with disabilities – which echoed years of advocacy from the disability community. 

As pressure mounted, an Advisory Council was set up within the National Institute on Minority Health and Health Disparities to consider the designation.  However, on September 1, the Advisory Council rejected the designation.  The disability community was outraged and mustered a petition drive that within 48 hours had collected 1,500 signatures from advocacy groups, researchers and public health professionals, and other stakeholders.  This petition and advocacy work tipped the balance and NIH eventually voted in favor of the designation.

National Core Indicators—IDD and National Core Indicators-AD serve an important role in tracking the health access and health status of older adults and people with disabilities, as well as the disparities at the intersection of race and poverty.  Because of the NIH designation, these data will become even more important in policy conversations aimed at strengthening health care for people with disabilities.

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