Washington Update

ACD Approves Final Recommendations from NIH Subgroup on Individuals with Disabilities

By: Jacqueline Robinson-Hamm
Wednesday, December 21, 2022
On December 9, National Institutes of Health (NIH) Advisory Committee to the Director (ACD) voted to approve final recommendations from the ACD Working Group on Diversity, Subgroup on Individuals with Disabilities. Formed in August 2021, the subgroup was charged with providing ACD and the NIH director with advice on how to best support individuals with disabilities in the scientific workforce. This initial scope was broadened by subgroup members to include policy changes that expand research focused on addressing the health and healthcare disparities affecting persons with disabilities and improve the inclusion of persons with disabilities in research studies. 

Nine recommendations from the subgroup were presented to ACD that aim to increase the visibility and support of persons with disabilities in the NIH-funded workforce and research centering on disability health and healthcare disparities. The first suggestion is to update the NIH mission statement to remove verbiage of “reduce disability.” As is, this can be perceived as ableist given that many disability communities and disabled persons live full, healthy lives and do not wish to be reduced. 

The second and third recommendations, establish an NIH Office of Disability Research and an NIH Disability Equity and Access Coordinating Committee, aim to elevate disability research and coordinate disability health research activities across NIH. Akin to the Sexual & Gender Minority Research Office, centralizing disability research in an NIH office and committee may promote attention to disability research and workforce issues.

Research involving persons with disabilities was a key suggestion, including formally designating persons with disabilities as a health disparity population. This designation would open funding opportunities focused on health disparities to include individuals with disabilities. Additional research-related recommendations presented were funding and promoting research on health and healthcare disparities experienced by persons with disabilities, collecting data on disability wherever demographic information is collected, and supporting inclusion of disabled people as research participants. 

Further recommendations include examining structural ableism that may exist at NIH and ensuring that anti-ableism is a core component of all NIH diversity, equity, inclusion, and accessibility efforts; reviewing policy and identifying opportunities to promote disability inclusion in the NIH-funded workforce; expanding efforts to include disability communities and perspectives of individuals with disabilities; and maintaining accountability for disability inclusion efforts.

The recorded presentation and discussion can be viewed here, beginning at approximately 2:10:10. The full report from the subgroup will be available on the ACD meetings website soon.