Federal health officials are facing intense scrutiny from disability rights advocates, researchers, and public health experts over a sweeping overhaul proposed for a critical national health questionnaire. The Centers for Disease Control and Prevention (CDC) has advanced plans to significantly alter the National Health Interview Survey (NHIS) ahead of its 2028 rollout, a move critics warn will drastically obscure the true prevalence of developmental and intellectual disabilities across the United States.
The annual survey, which typically samples approximately 27,000 American adults to evaluate health status, chronic conditions, injuries, and healthcare accessibility, stands to lose the vast majority of its disability-focused inquiries. Stakeholders contend that the proposed modifications threaten not only accurate demographic tracking, but also the equitable distribution of federal funding, the development of targeted medical interventions, and the overall understanding of health disparities among vulnerable populations.
As the public comment period approaches its deadline, advocacy organizations and academic researchers are mobilizing to challenge the CDC’s methodology, citing deep concerns over data reliability, accessibility barriers in survey design, and a troubling lack of transparent stakeholder consultation.
Anatomy of the Proposed Overhaul
At the heart of the controversy is a massive reduction in the number of questions dedicated to measuring functioning and disability. According to analysis from the Human Services Research Institute (HSRI), a nonprofit organization that has issued formal guidance for stakeholders, the current iteration of the survey features 49 specific questions addressing various dimensions of disability. Under the CDC’s 2028 redesign proposal, that number would plummet to just 15.
Crucially, the streamlined questionnaire would eliminate inquiries specifically engineered to capture developmental and intellectual disabilities. Among the omissions are questions determining whether an individual’s difficulties with cognition, communication, or mobility originated before the age of 22—the clinical threshold for developmental disabilities. Furthermore, the proposed cuts scrap questions evaluating everyday learning challenges and difficulties completing routine daily tasks.
Lindsay DuBois, a research associate at HSRI, summarized the overarching concern of the advocacy community: the changes will structurally impede the federal government’s ability to accurately identify and enumerate citizens living with disabilities, particularly those with intellectual and developmental conditions.
Beyond the loss of specific questions, the CDC is also proposing a fundamental shift in how the survey is administered. Historically, the NHIS relied heavily on face-to-face, interviewer-led household interviews. The 2028 redesign envisions transitioning roughly 25,000 respondents to a self-administered model completed primarily online or via paper forms.
Advocates argue this shift introduces severe equity issues. Individuals with disabilities frequently face barriers to reliable internet access and digital technology. Moreover, self-administered digital or paper formats inherently lack the personalized accommodations—such as screen-reader compatibility, large-print options, plain-language translation, and real-time clarification—that trained human interviewers provide.
Public health researchers also warn that changing the mode of administration disrupts longitudinal data tracking. When survey methodologies shift dramatically from in-person interviews to self-directed digital forms, observed changes in health metrics over time may reflect artifacts of the survey design rather than genuine shifts in public health.
Preexisting Flaws and the Danger of Compounding Errors
The controversy surrounding the 2028 redesign is amplified by longstanding criticisms of the survey’s current performance. Scott Landes, a professor of sociology at Syracuse University and co-founder of the Disability Health Equity Research Network, points out that the existing NHIS framework is already far from foolproof.
According to Landes, internal studies utilizing the survey’s own data demonstrate that it consistently fails to capture approximately half of the disabled population identified by broader federal measurement standards. Specifically, the current survey model frequently misclassifies significant portions of the population with clear functional impairments, missing roughly 25 percent of wheelchair users, 36 percent of blind adults, and 44 percent of deaf adults.
Researchers were previously able to identify these gaps only because the broader questionnaire included supplementary inquiries regarding the use of assistive equipment, hearing aids, and other accommodations. The alarming reality of the 2028 proposal, Landes notes, is that the redesign eliminates those vital cross-referencing questions, leaving a heavily truncated and already flawed screening tool as the sole mechanism for identifying disabled respondents.
This concern is underscored by documentation released by the federal government itself. A 2025 filing from the CDC’s National Center for Health Statistics—the division responsible for managing the survey—explicitly acknowledged that the proposed questionnaire adjustments would “not provide the desired depth” regarding functioning, disability, and related health topics.
The Broader Stakes: Funding, Research, and Health Outcomes
The implications of an inaccurate federal disability count extend far beyond academic demography. Data gathered through the NHIS directly influences public policy, epidemiological research, and the allocation of vital federal financial resources.
State Councils on Developmental Disabilities, alongside numerous federal and state support programs, rely heavily on accurate population metrics to distribute funding and tailor services to communities in need. When federal surveys undercount minority or marginalized populations, resource allocation suffers correspondingly, leaving state and local agencies unequipped to address actual community needs.
Furthermore, medical researchers utilize NHIS data to map health trends, identify disparities, and establish clinical baselines. Without accurate data reflecting the true health experiences of disabled Americans, medical providers and public health agencies are severely hampered in their ability to design effective interventions.
“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.
Historical Context and Regulatory Pushback
The current standoff between federal agencies and the disability community mirrors recent advocacy victories involving other federal statistical bodies.
In late 2024, a coalition of researchers and advocates—including Professor Landes—successfully pressured the U.S. Census Bureau to halt a controversial plan to overhaul disability-related questions within the American Community Survey (ACS). Critics of that initiative had warned that sweeping alterations to the questionnaire would artificially depress disability rates, rendering historical data incomparable and underfunding critical support systems.
However, advocates note that the current timeline and process surrounding the CDC’s NHIS redesign stand in stark contrast to previous updates. When the NHIS underwent its last major revision, which rolled out in 2019, the process was preceded by years of preliminary testing, public input phases, and structured evaluations beginning as early as 2015.
By comparison, stakeholders argue that the 2028 redesign process has moved forward without an equivalent series of public-input forums or technical expert panels, leaving what HSRI describes as an “extremely short” and restrictive window for meaningful external review.
Federal Response and Administrative Justification
In defense of the proposed updates, representatives from the Department of Health and Human Services (HHS) have characterized the NHIS modernization as a routine and necessary administrative evolution.
Federal officials maintain that the modifications are designed to streamline the reporting process, reduce respondent burden, and make it easier for a broader cross-section of the American public to complete the questionnaire. Additionally, supporters of the redesign argue that updating the survey questions is essential to capture contemporary health topics and emerging public health trends more efficiently.
The CDC has pointed to practical pressures driving the transition, citing rising operational costs, growing difficulty in reaching households through traditional in-person methods, and an urgent institutional need for a more flexible, cost-effective, and efficient survey mechanism. Landes and other critics, however, argue that administrative convenience should not come at the expense of empirical accuracy and the fundamental visibility of marginalized populations.
Path Forward and Public Engagement
As the debate intensifies, stakeholders across the healthcare and advocacy spectrum are urging the CDC to pause the implementation of the 2028 redesign, echoing the successful intervention that forced the Census Bureau to reconsider its ACS modifications a year prior.
The public comment period for the proposed survey changes remains open through October 20, providing a critical window for researchers, advocacy organizations, and impacted citizens to register formal objections and demand a more rigorous, transparent revision process.
Until then, the scientific and disability communities remain deeply concerned that administrative modernization efforts risk erasing millions of Americans from the statistical record, ultimately undermining the very public health infrastructure designed to protect and serve them.
