A sweeping proposed overhaul of a crucial federal health survey is drawing sharp criticism from disability advocates, researchers, and public health experts who warn that the changes could lead to a drastic and dangerous undercount of Americans living with developmental disabilities.
The U.S. Centers for Disease Control and Prevention is currently spearheading major structural and questionnaire changes slated for the 2028 version of the National Health Interview Survey. As one of the nation’s premier health-monitoring tools, the annual questionnaire traditionally surveys approximately 27,000 adults nationwide regarding a wide array of lived experiences, including acute illnesses, chronic medical conditions, physical injuries, and access to necessary healthcare services.
However, the proposed modifications threaten to dramatically narrow the scope of how disability data is collected, analyzed, and applied across the federal government. According to Lindsay DuBois, a research associate at the nonprofit Human Services Research Institute—which recently published comprehensive guidance for disability organizations and various stakeholders regarding the proposal—the current iteration of the survey includes 49 distinct questions specifically related to disabilities and daily functioning. Under the newly proposed plan, that critical metric would plummet down to just 15 questions.
Of primary concern to advocacy groups is the targeted omission of foundational questions that track the origin and nature of a person’s functional challenges. Specifically, the revisions would completely discard a vital screening question asking whether an individual’s difficulties with cognition, communication, mobility, or other functional issues originated before the age of 22. Furthermore, the proposal scraps questions that evaluate specific challenges related to learning new information or completing everyday independent living tasks. Advocates emphasize that these precise queries were intentionally designed to improve the identification of individuals with intellectual and developmental disabilities within federal data sets.
The bottom line, according to DuBois, is that the proposed revisions will make it significantly harder to accurately identify people with disabilities in the collected data—particularly targeting and impacting individuals with intellectual and developmental disabilities.
The implications of this potential data gap extend far beyond academic research or demographic record-keeping. Data collected through the National Health Interview Survey directly influences critical federal funding decisions, including allocations for State Councils on Developmental Disabilities and various other support programs. Furthermore, the survey enables researchers to track longitudinal health trends among people with disabilities, and their empirical findings routinely inform the standard of care delivered by medical providers across the country.
Without accurate, reliable data, the healthcare system risks failing the populations that need targeted support the most. Katy Neas, CEO of The Arc of the United States, underscored the gravity of the situation, noting that if the government can no longer serve as a trusted source of data that accurately reflects the real experiences of real people, the nation will never achieve better health outcomes for marginalized communities.
This mounting alarm arrives against the backdrop of an existing survey framework that experts argue is already deeply flawed. Scott Landes, a professor of sociology at Syracuse University and co-founder of the Disability Health Equity Research Network, pointed out that current methodologies already struggle to capture the full picture of the disabled population.
Landes noted that academic studies utilizing the survey’s own data reveal that it misses approximately half of the disabled adults that are otherwise captured by the overarching federal standard for measuring disability. For instance, the current mechanism counts a quarter of wheelchair users as not disabled, along with 36% of legally blind adults and 44% of deaf adults. Researchers were only able to uncover these significant oversights because the survey also asks auxiliary questions about adaptive equipment use and hearing aids.
The worse news, Landes explained, is that the proposed 2028 redesign completely cuts those vital auxiliary questions, meaning that the already flawed screening mechanism would become the sole method used to identify disabled adults.
Complicating matters further, Landes pointed to a 2025 filing from the CDC’s National Center for Health Statistics—the division that runs and manages the survey—which explicitly acknowledged that the proposed modifications would fail to provide the desired depth regarding functioning, disability, and other related topics.
Landes is no stranger to fighting federal shifts in disability data collection. He was among a prominent coalition of stakeholders and researchers who successfully convinced the U.S. Census Bureau to hit the brakes on a controversial 2024 plan that sought to make sweeping, similarly restrictive changes to disability-related questions in the American Community Survey over identical concerns regarding catastrophic undercounts.
Beyond the wholesale reduction in the number and depth of questions, the CDC is also aiming to fundamentally alter the methodology of how the National Health Interview Survey is administered. Historically, vital health information has been gathered through rigorous face-to-face interviews conducted by trained personnel. The new proposal, however, shifts the framework so that roughly 25,000 respondents would primarily complete the survey independently via paper or online digital formats.
This operational shift introduces a cascade of accessibility and equity barriers. DuBois noted that beyond obvious concerns regarding whether lower-income individuals or disabled Americans have reliable, equitable access to the internet and necessary technology for online surveys, there are severe implications for those who require specialized communication accommodations. Individuals who rely on large print materials, screen-reader compatibility, plain language translations, or other direct communication supports are often accommodated effectively through live human interviewers, but these nuances cannot be replicated through rigid online or paper forms.
From a public health monitoring perspective, DuBois added, this procedural shift introduces profound challenges in being able to empirically measure true changes in population health over time. Researchers may end up capturing statistical variances caused purely by the change in survey administration methods rather than actual, substantive shifts in the public’s health.
The aggressive timeline surrounding the update has also catalyzed widespread anxiety across the advocacy community. DuBois pointed out that prior to the last major revision of the survey, which rolled out in 2019, the CDC engaged in multiple rigorous stages of public input, testing, and stakeholder consultation that began as early as 2015. By comparison, she noted that the current redesign process lacks an equivalent series of public input opportunities or technical expert panels, describing the current window for feedback as extremely short.
In response to the mounting criticism, a spokesperson for the Department of Health and Human Services characterized the update to the National Health Interview Survey as a routine operational modernization. The agency maintained that the proposed changes are specifically intended to make it easier and more convenient for American citizens to respond, while simultaneously improving the measurement of contemporary health topics.
Furthermore, the CDC has cited rising administrative costs, growing difficulties in successfully reaching households through traditional methods, and an urgent organizational need for a more flexible and efficient survey mechanism as the primary drivers behind the overhaul.
With the deadline fast approaching, the proposal remains open for public comment through October 20, providing a narrow window for advocates, researchers, and impacted individuals to make their voices heard regarding the future of federal disability data collection.
