KU researchers suspect two federal surveys undercount people with disabilities

Analysis says survey shortcomings lead to mismatched health care services

TOPEKA — Researchers at the University of Kansas say their national survey of individuals’ health demonstrated two widely used federal assessments relied upon to distribute public assistance missed swaths of people with mental health disabilities and chronic conditions.

Findings in the National Survey on Health and Disability, known as the NSHD, performed by KU were compared with responses to disability questions in the American Community Survey, referred to as the ACS-6, and the Washington Group Short Set, or the WG-SS.

The new research reported in the journal Health Affairs said ACS-6 failed to identify 20% and WG-SS failed to pinpoint 43% of respondents with a disability who self-reported a psychiatric disability or chronic health condition on the NSHD.

“We were able to categorize how people self-identify and categorize their own disability and how those results compared with the other commonly used measures,” said Jean Hall, director of KU’s Institute for Health and Disability Policy Studies in the Life Span Institute.

The gaps suggested health care resources allotted for certain types of disability were not consistent with need, researchers said.

ACS-6, in particular, is broadly used in the United States by federal and state agencies. WG-SS is used more internationally, but regularly deployed in this country.

KU researchers said questions in the ACS-6 and WG-SS were insufficiently comprehensive. NSHD included disability questions in the ACS-6 and WG-SS, but NSHD asked individuals if they identified as having any physical or mental condition, impairment or disability influencing daily activities or required use of special equipment or devices. NSHD also requested respondents classify their own disability.

“We argue that you’re identifying people as disabled, but not categorizing them correctly with the type of disabilities they report, and because of that probably not getting people the supports and services they need,” Hall said.

This study published in Health Affairs was written by Hall; Noelle Kurth and Kelsey Goddard, research associates at the Life Span Institute; and Catherine Ipsen and Andrew Myers of the University of Montana.

The Affordable Care Act mandated federal health surveys collect data to identify people with disabilities to better understand prevalence of these conditions and to address health disparities. Availability of precise numbers could help improve policy, address risk, understand disability prevalence and reduce adverse outcomes.

The COVID-19 pandemic complicated statistical analysis of disability due to a rise in the number of people with mental health challenges and of people experiencing complications from long COVID-19. Standard ACS-6 and WG-SS measures, KU researchers said, missed people with these conditions in the greatest numbers, further leading to undercounting.

KU researchers said ACS-6 and WG-SS surveys could be improved by adding questions about how the mental or physical condition, impairment or disability influenced daily activities and required use of equipment or technology.

Also, the surveys could delve into the range of conditions experienced by respondents as well as the age of onset and duration of the condition.

“People with disabilities are the best at defining their own conditions,” said Kurth, of the Life Span Institute at KU. “There is a rising tide of disability pride in the U.S. in the last 10 years as well, so obtaining the most accurate counts of disability is something worth talking about.”

Kansas Reflector is part of States Newsroom, a network of news bureaus supported by grants and a coalition of donors as a 501c(3) public charity. Kansas Reflector maintains editorial independence. Contact Editor Sherman Smith for questions: info@kansasreflector.com. Follow Kansas Reflector on Facebook and Twitter.

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