CDC Proposes Cutting Disability Questions From National Health Interview Survey

The U.S. Centers for Disease Control and Prevention is seeking public comment on major changes to the 2028 version of the National Health Interview Survey, an annual questionnaire that asks about 27,000 adults about illness, chronic conditions, injuries and health access. According to Disability Scoop, the proposal would sharply reduce the number of disability and functioning questions, a change advocates say could lead to a drastic undercount of Americans with developmental disabilities.

The current survey includes 49 questions related to disabilities and functioning, according to Lindsay DuBois, a research associate at the nonprofit Human Services Research Institute, which published guidance for disability organizations on the proposal. Under the new plan, DuBois said that number would drop to 15. The revisions would also leave out a question about whether a person's difficulties with cognition, communication or mobility originated before the age of 22, as well as questions about challenges learning or completing everyday tasks, all of which were designed to improve identification of people with developmental disabilities.

Data from the National Health Interview Survey influences federal funding decisions for State Councils on Developmental Disabilities and other programs, and allows researchers to track health trends among people with disabilities. "The bottom line: The proposed revisions will make it harder to identify in the data people with disabilities, especially people with intellectual and developmental disabilities," DuBois said. Katy Neas, CEO of The Arc of the United States, warned that without a trusted government source of data on people's real experiences, "we're never going to get better health outcomes."

Scott Landes, a Syracuse University sociology professor and co-founder of the Disability Health Equity Research Network, noted that the existing survey already misses about half of the disabled adults that the federal standard for measuring disability identifies, counting a quarter of wheelchair users as not disabled along with 36% of blind adults and 44% of deaf adults. He pointed to a 2025 filing from the CDC's National Center for Health Statistics acknowledging that the proposed changes would "not provide the desired depth" on functioning and disability.

The plan also includes a shift in how the survey is conducted, moving from traditional face-to-face interviews to having about 25,000 people primarily complete it on paper or online. DuBois said that raises concerns about equitable access to internet and technology for people with disabilities, and about respondents who need large print, screen-reader compatible, plain language or other communication supports that interviewers can provide but online or paper surveys cannot. The public comment period is open through Oct. 20; the Department of Health and Human Services characterized the update as routine, while the CDC cited rising costs, difficulty reaching households and the need for a more flexible and efficient survey.