CDC Proposal Would Cut Disability Questions in Federal Health Survey From 49 to 15
A proposed CDC redesign of the 2028 National Health Interview Survey would cut disability and functioning questions from 49 to 15, a change advocates warn could undercount people with developmental disabilities while the agency cites rising costs and harder-to-reach households.
The Centers for Disease Control and Prevention is proposing major changes to the 2028 National Health Interview Survey that would sharply reduce the number of questions about disability and functioning, according to Disability Scoop.
The annual survey asks about 27,000 adults about illness, chronic conditions, injuries, access to care and other health topics. The current version includes 49 questions related to disability and functioning, according to Lindsay DuBois of the nonprofit Human Services Research Institute, which published guidance for stakeholders on the proposal. Under the planned redesign, that number would fall to 15.
Advocates say the draft would drop a question about whether difficulties with cognition, communication, mobility or other functions began before age 22, along with questions about challenges in learning or completing everyday tasks. Those items were designed to help identify people with developmental disabilities, according to Disability Scoop.
Advocates warn of an undercount; the agency cites cost and reach
Data from the survey help shape federal funding decisions, including for State Councils on Developmental Disabilities, and allow researchers to track health trends among people with disabilities, Disability Scoop reported. Katy Neas, chief executive of The Arc of the United States, said losing a trusted federal source asking about people’s real experiences would make better health outcomes harder to achieve.
The concerns build on criticism of the current survey itself. Scott Landes, a Syracuse University sociology professor and co-founder of the Disability Health Equity Research Network, said studies using the survey’s own data found it misses about half of the disabled adults identified by the federal standard, including a quarter of wheelchair users and substantial shares of blind and deaf adults, according to Disability Scoop. He said researchers detected those gaps partly because the survey also asks about equipment use and hearing aids, questions the redesign would cut.
Becker’s Hospital Review reported that the redesigned survey would shift from in-person interviews to a sequential mixed-mode approach, with shorter questionnaires and only foundational disability measures based on the Washington Group Short Set. Disability Scoop reported that about 25,000 people would primarily complete the survey on paper or online, raising concerns about internet access and about supports such as large print, screen readers and plain language that interviewers can provide.
A spokesperson for the Department of Health and Human Services characterized the update as routine and said it is intended to make the survey easier to complete while improving measurement of current health topics. The CDC cited rising costs, growing difficulty reaching households and the need for a more flexible and efficient survey, according to Disability Scoop. The National Center for Health Statistics is seeking public input on the redesign, with comments due Oct. 20.
Reporting based on coverage by Disability Scoop and Becker’s Hospital Review.
