Research FAQ: Understanding New NIH Designation for People With Disabilities

NIH disability graphic.

Published November 20, 2023


In September, Eliseo J. Pérez-Stable, MD, director of the National Institute on Minority Health and Health Disparities (NIMHD), designated people with disabilities as a population with health disparities for research supported by the National Institutes of Health (NIH). The NIH defines health disparities as “gaps in the quality of health and health care that mirror differences in socioeconomic status, racial and ethnic background, and education level.”

The announcement was one of several steps the NIH is taking to address health disparities faced by people with disabilities and to increase their representation in research.

For people with disabilities, their families, and their caregivers, the designation was a “long time coming,” says Jennifer Arroyo, Family Support Specialist with Parent Network of Western New York, an advocacy group for families of children living with disabilities. “I’m glad we’re here. It just took too long.”

“I agree with Jennifer, and I'm glad that this is finally being considered,” says Jessica Colarusso, who, like Arroyo, is a parent and advisor for research pertaining to children and youth with special healthcare needs. “I really hope this triggers more research studies. Often in healthcare, individuals with disabilities are treated medically just like anyone else. However, disabilities can create a much more complicated picture that often gets overlooked. Hopefully this designation will lead to further research and in turn, more favorable outcomes for these individuals.”

Denise Lillvis, PhD, MPA, Assistant Professor, Department of Epidemiology and Environmental Health, School of Public Health and Health Professions, and a UB Clinical and Translational Science Institute (CTSI) K Scholar, is a researcher who works with children with disabilities and the parents of children with disabilities. Here, Lillvis discusses what the new NIH designation means for people with disabilities and their families.

How can researchers ensure that people with disabilities have access to participating in research studies?

It really depends on the disability and the study — some people with disabilities might not need any additional accommodations while others may need accommodations. This points to the importance of actively involving individuals with disabilities as research advisors. For example, I have four parents of children with special healthcare needs that advise me on my research. Advisors can help identify challenges to participation, as well as resources and solutions. Advisors can also provide feedback on research questions, the methods, and the results of the study.

What type of impact do you hope this change will have on future studies?

I'm hopeful that future research will be able to identify promising interventions to improve the health equity of children with disabilities in general, as well as children with disabilities who face additional challenges such as poverty and racism. In addition, I believe this new designation will provide for research that can incorporate individuals with more complex healthcare needs.

How are you addressing health disparities in your research?

In my research, I look at physical trauma in children with special healthcare needs, which includes children with disabilities. Our research team found that children with special healthcare needs are at a greater risk for hospital complications following trauma compared to children without special healthcare needs. We’re currently working on research projects to identify why this is happening from both the healthcare perspective as well as the parent perspective. We’ll use this information to design interventions to address this disparity.

Learn more about the recent NIH designation here.

Graphic courtesy of National Institutes of Health.