National KU-based survey asks adults with disabilities to share their experiences to guide future research and policy

A Latino man with a prosthetic hand is seated in the cab of a large truck facing the camera.

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Wed, 04/02/2025

Justice Ender

LAWRENCE — The Institute for Health and Disability Policy Studies (IHDPS) at the University of Kansas is conducting the National Survey on Health and Disability (NSHD) to ask U.S. adults with disabilities to share their experiences with housing, health care, health insurance, transportation, community participation and other aspects of daily life.

NSHD responses help shape resources, policies and practice recommendations aimed at improving the health, employment and overall well-being of people with disabilities in the United States.

A middle-aged black man is wearing a light shirt with suspenders and black pants. He is seated in a wheelchair and holding a microphone. There are white chairs blurred out in the foreground.

“Obtaining robust data about the experiences of people with disabilities directly from those people is crucial when working to address disparities,” said Noelle Kurth, principal investigator for the project and a research associate at IHDPS, a part of the KU Life Span Institute.

“This is a national survey specifically designed by people with disabilities, for people with disabilities — to center their voices, experiences, and priorities,” Kurth added.

The NSHD gathers information that helps policymakers, researchers and community organizations better understand the barriers and successes people with disabilities experience in their daily lives. These insights guide future research, inform policy and support the development of practical resources to improve health, employment and community participation outcomes.

Funded by the National Institute on Disability, Independent Living, and Rehabilitation Research, the NSHD was originally established in 2018 under the leadership of Research Professor Jean Hall. Kurth said that Hall’s contributions to disability research helped shape the survey into a trusted resource for understanding the experiences of people with disabilities nationwide.

Hall, who is stepping down from directing IHDPS this spring, said that building the survey with input from people with disabilities has always been central to the project.

“I’m proud to see it continue as a tool for amplifying the voices of people whose experiences too often go unheard,” Hall said.

IHDPS is working with disability organizations and other groups to help reach people who may not have had the opportunity to share their voices in this kind of research. A website with outreach materials is available for interested organizations.

Kelsey Goddard, an assistant research professor at IHDPS, said that the survey is open to anyone who has a physical, mental, emotional or health condition — even if they do not identify as having a disability.

“It’s OK if you don’t think of yourself as disabled,” Goddard said. “If you have a condition that impacts your life, your experiences are important and can help improve our communities.”

The survey is available online or by phone (1-855-556-6328) and can be completed in English, Spanish or American Sign Language (ASL). People who need accommodations or have questions can contact the study team at 1-855-556-6328 or healthsurvey@ku.edu.

IHDPS conducts research and evaluation to improve access to and quality of health care services for all people, especially those with disabilities and chronic health conditions.