A proposed federal overhaul of a critical nationwide health survey is drawing sharp criticism from advocacy groups and researchers who warn that the changes could trigger a drastic undercount of Americans living with developmental disabilities.
The U.S. Centers for Disease Control and Prevention is currently pursuing major modifications to the 2028 version of the National Health Interview Survey. The annual questionnaire is a cornerstone of federal health data collection, traditionally polling roughly 27,000 adults regarding their experiences with illnesses, chronic conditions, injuries, healthcare access, and various other public health indicators.
According to Lindsay DuBois, a research associate at the nonprofit Human Services Research Institute—which recently published guidance for disability organizations and other stakeholders regarding the proposal—the current iteration of the survey includes 49 questions specifically related to disabilities and daily functioning. Under the newly proposed plan, however, that count would be slashed down to just 15 questions.
Advocates point out that the sweeping revisions would notably omit a crucial question addressing whether an individual’s difficulties with cognition, communication, mobility, or other functional issues originated before the age of 22. Furthermore, the updated survey format would discard questions centered on challenges with learning or completing everyday tasks. These specific metrics were originally designed to optimize the identification of individuals with intellectual and 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.
The data gathered through the National Health Interview Survey carries substantial weight, directly influencing federal funding allocations for State Councils on Developmental Disabilities and various other vital support programs. Moreover, the survey enables independent researchers to meticulously track long-term health trends among disabled populations, providing empirical insights that can significantly inform and improve medical care delivered by healthcare providers nationwide.
"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.
Compounding these concerns, experts note that the existing survey framework is already far from perfect. Scott Landes, a professor of sociology at Syracuse University and co-founder of the Disability Health Equity Research Network, emphasized that the current system possesses notable blind spots.
"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," Landes explained. "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 highlighted that a 2025 filing from the CDC’s National Center for Health Statistics—the division responsible for managing the survey—explicitly acknowledged that the proposed changes would "not provide the desired depth" regarding functioning, disability, and other related topics.
Landes previously stood among a coalition of stakeholders who successfully convinced the U.S. Census Bureau to hit the brakes on a 2024 initiative that would have implemented sweeping alterations to disability-related questions within the American Community Survey, following widespread concerns that those revisions would likewise result in a severe undercount.
Beyond the specific questions being eliminated, the CDC is also aiming to fundamentally alter the methodology of how the National Health Interview Survey is administered. Historically, vital information has been gathered via thorough face-to-face interviews conducted by trained personnel. The new proposal, however, envisions shifting the process so that approximately 25,000 respondents would complete the survey primarily on paper or online.
This transition to a self-administered digital and physical format introduces significant accessibility hurdles. "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," DuBois noted. "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 timeline and transparency of the update process have also raised red flags among researchers. DuBois noted that the previous major revision to the National Health Interview Survey, which rolled out in 2019, was preceded by several comprehensive stages of public input and testing that began as early as 2015.
"By comparison, this redesign process does not include an equivalent series of public-input or technical expert panels to our knowledge," she said, characterizing the current window for public feedback as "extremely short."
In response to the mounting criticism, a spokesperson for the Department of Health and Human Services defended the update, characterizing the overhaul of the National Health Interview Survey as a routine administrative modernization. The agency maintained that the planned changes are designed to streamline the process, making it easier for American citizens to respond while simultaneously improving the measurement of contemporary health topics.
The CDC has pointed to "rising costs, growing difficulty in reaching households and the need for a more flexible and efficient survey" as primary drivers behind the transition.
The formal proposal remains open for public comment through October 20.
