KU-Led National Health Project Awarded $600,000 Grant to Study Experiences of People with Disabilities Affected by the COVID-19 Pandemic

An established KU research program that surveys Americans with disabilities about their health has been awarded a $600,000 grant to document experiences during the COVID-19 pandemic, including those of marginalized populations within the disability community, such as LGBTQ+ individuals and people of color. 

The National Survey on Health and Disability (NSHD), directed by Jean Hall, director of the KU Institute for Health and Disability Policy Studies (IHDPS) and the Research and Training Center on Independent Living (RTC/IL), is a KU-developed survey that has gathered detailed, nationwide information on U.S. adults with disabilities and their experiences with health insurance and health care services since 2018. It is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research.

“This project will identify if access to healthcare has gotten worse for any subgroups of people with disabilities, whether those are people who are LGBTQ+, or people of color, or people of a certain age, or among people who live in a certain geographic area,” Hall said. “The survey will help us identify if that's happening.” 

Respondents to the survey are asked to describe their experiences with the health care system as well as the impact of the pandemic on their daily lives. 

“The survey will help us identify what is happening so that we can make recommendations to policymakers or healthcare providers,” said Noelle Kurth, co-investigator of the project. Those recommendations may also benefit other underserved groups. 

The survey, which builds on previous work that documented health disparities, will gather information about healthcare access. For example, although telehealth is now more widely available, people with disabilities, including those from other marginalized subpopulations, may have greater challenges in accessing those services compared to the general population.

“I think what we need to do right now to be able to help underrepresented communities is to get a good understanding of what is happening, and we want to hear directly from individuals with disabilities,” Hall said. “You'll see in the news everything on COVID-19 and how it impacts people, but often what is missing is quantitative data about how it affects people with disabilities. We want to be able to quantify what exactly is happening, and what needs to change to make the situation better for people with disabilities.”

Written by Ha Tran
Illustration by Elizabeth Newell