A proposed revamp of a key federal survey could lead to a drastic undercount of Americans with developmental disabilities, advocates warn.
The U.S. Centers for Disease Control and Prevention is calling for major changes to the 2028 version of the National Health Interview Survey. The annual questionnaire asks about 27,000 adults about their experiences with illness, chronic conditions, injuries, health access and more.
The current iteration 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 and other stakeholders on the proposal. Under the new plan, she said that number would drop to 15.
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Importantly, advocates say the revisions would leave out a question about whether a person’s difficulties with cognition, communication, mobility or other issues originated before the age of 22 as well as questions about challenges learning or completing everyday tasks, all of which were specifically designed to improve identification of people with developmental 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.
Data collected through 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. Their findings can inform care from medical providers.
“If we don’t have the government as a trusted source of data, asking questions about real people and what their real experiences are, we’re never going to get better health outcomes,” said Katy Neas, CEO of The Arc of the United States.
The proposal is particularly alarming since the existing survey is already flawed, said Scott Landes, a professor of sociology at Syracuse University who is co-founder of the Disability Health Equity Research Network.
“Studies using the survey’s own data show it misses about half of the disabled adults the federal standard for measuring disability identifies. It counts a quarter of wheelchair users as not disabled, along with 36% of blind adults and 44% of deaf adults. Researchers caught this only because the survey also asks about things like equipment use and hearing aids,” he said. “The worse news is that a proposed 2028 redesign cuts those questions, so the flawed screen becomes the only way to identify disabled people.”
Landes notes that a 2025 filing from the CDC’s National Center for Health Statistics, which runs the survey, acknowledged that the proposed changes would “not provide the desired depth” on functioning and disability and other topics.
Landes was among a group of stakeholders who convinced the Census Bureau to back off a 2024 plan to make sweeping changes to disability-related questions in its American Community Survey over concerns that the revisions would lead to an undercount.
Beyond the questions themselves, the CDC is looking to change how the National Health Interview Survey is conducted. Traditionally, information has been gathered through face-to-face interviews, but the idea now is to have about 25,000 people primarily complete the survey on paper or online.
“In addition to the concerns about people with disabilities having equitable access to internet and technology needed for online surveys, there are implications for people who need large print, screen-reader compatible, plain language, or other communication supports that can be provided through interviewers but not online/paper,” said DuBois from the Human Services Research Institute. “From a health monitoring perspective, this can introduce challenges in being able to empirically measure changes in health over time, because you may now be picking up differences from survey administration and not true health change.”
The timing of the update is also causing concern. DuBois said that there were several stages of input and testing starting in 2015 ahead of the last revision to the National Health Interview Survey, which rolled out in 2019.
“By comparison, this redesign process does not include an equivalent series of public-input or technical expert panels to our knowledge,” she said, calling the current timeline for input “extremely short.”
A spokesperson for the Department of Health and Human Services characterized the update to the National Health Interview Survey as routine and said the changes are intended to make it easier for Americans to respond while also improving the measurement of contemporary health topics.
The CDC cited “rising costs, growing difficulty in reaching households and the need for a more flexible and efficient survey.”
The proposal is up for public comment through Oct. 20.
