Media advisory: KU expert available to discuss proposed changes to U.S. Census and how people with disabilities are counted

LAWRENCE — Through Dec. 19, the U.S. Census Bureau is accepting public comment on proposed changes to the American Community Survey — the most comprehensive survey of American life. A University of Kansas expert on disability studies is available to discuss with reporters the proposals that are raising concerns among disability advocates.

Jean Hall is director of the Institute for Health & Disability Policy Studies at the University of Kansas Life Span Institute. Hall has an extensive background in the evaluation of health care programs, especially for people with disabilities or chronic illnesses. Her research has included private, state and federal projects related to health care and employment for people with disabilities or chronic illnesses in the employment, Medicaid, Medicare and high-risk pool systems. Her team currently administers the National Survey on Health and Disability.

In testing done by the Census Bureau last year, people identified as having a disability using the current set of questions, compared to the proposed ones, went from 13.9% to 8.1%. However, Hall and colleagues have found that disabled Americans are already undercounted. In research published in the journal Health Affairs in October 2022, they found that federal surveys already undercount people with disabilities by as much as 43%.

If the changes are implemented, it could result in reduced services, Hall said. She and other researchers recommend postponing the changes and establishing a national task force on disability data and working with the federal Interagency Committee on Disability Research to develop an appropriate approach to updating how disability status is assessed.

"If the disability population is arbitrarily cut by more than 40% due to the proposed question changes, we can only assume that funding for disability programs will similarly be slashed,” Hall said.

To arrange an interview with Hall for further comments, contact Jen Humphrey at jenhumphrey@ku.edu or 785-864-6621.