The CDC wants to cut nearly three-quarters of the questions in its main health survey, and it is willing to sacrifice data on disabilities to do it.
The agency’s National Center for Health Statistics proposed overhauling the National Health Interview Survey in August. The survey has collected Americans’ health data since 1957, and the redesign would remove several disability-related questions from it. The adult questionnaire saw the greatest changes, and the proposed changes reduce 482 questions to 150 questions.
More than a quarter of Americans have a disability. The survey’s questions primarily capture functional disabilities, such as sight, hearing, and walking. Struck questions include hearing aids, fatigue, cognition, and mobility supports like wheelchairs and mobility scooters.
A spokesperson for the Department of Health and Human Services declined to answer questions about the changes, saying they were driven by a push to lower the cost of data collection. Roughly 25,000 households would receive a mailed questionnaire, a slight drop from past surveys.
The Data Gap Behind the Changes
The redesign is part of a broader trend. Stephen Blumberg, the CDC division director overseeing the survey, wrote in a 2025 memo that the redesign “does not provide the desired depth of information on specific topics (e.g., health insurance, functioning and disability, chronic conditions, injury) that are specifically named in our authorizing legislation … and that has been a feature of the questionnaire since 2019.”
That memo points to a pattern that stretches back years. The survey has been shedding questions on specific topics since 2019, and the redesign accelerates that process.
Advocates see the move differently. They argue that removing these questions would leave the government unable to track the disability population, which faces higher rates of chronic disease. Better data, they say, is essential for addressing health disparities among people with disabilities.
“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.
Neas spoke as part of a coalition pushing back against the changes.
What the Survey Misses
A recent paper co-authored by CDC statisticians found past surveys potentially missed up to 75% of people with intellectual and developmental disabilities. That figure comes from a paper rather than official CDC data, but it underscores the stakes of the redesign.
The redesign also removes questions on cognition, which is listed among the struck items.
A 2024 study using National Health Interview Survey data found people with a “selfcare disability” — meaning they have difficulty dressing themselves or bathing themselves, as people with intellectual and developmental disabilities often do — had the highest mortality rates. That finding shows what is at risk when the survey stops asking about these topics.
Who Decides What Stays
The redesign is not final. It is a proposal, and stakeholders have time to respond.
The survey collects data from roughly 25,000 households each year. That sample size has held steady despite the reduction in questions, though the mailed questionnaire count is slightly lower than in past surveys.
Blumberg’s memo points to a tension between what the survey asks and what its authorizing legislation requires. The redesign does not provide the depth of information on specific topics named in that legislation, a gap that has persisted since 2019.
The Case Against the Cut
Advocates argue that the redesign would result in significant undercounting of people with disabilities. They point to the 75% figure from the recent paper as evidence of what happens when surveys miss this population.
The coalition pushing back on the changes includes groups that represent people with epilepsy, nurses, and disability rights organizations. Their message is consistent: the survey is the primary source of national-level estimates of disability prevalence and health outcomes, and weakening it undermines the ability to understand the health status of people with disabilities.
The CDC’s stated rationale is cost. Lowering the cost of data collection is a legitimate goal, but advocates argue that the cost of losing data is higher. Without accurate numbers, policymakers lack the evidence needed to target resources effectively.
What Comes Next
The redesign is still under review. Stakeholders have time to respond, and the survey continues to operate while the proposal is considered.
Removing questions on disabilities breaks that continuity. The redesign would leave the government with less information about a population that already faces significant health disparities.
The coalition’s position is clear. They want the questions restored, and they are making their case publicly.
Whether the survey survives this redesign intact depends on whether advocates can persuade the CDC to reconsider.
Source material: “As CDC redesigns annual health survey, it removes questions about disabilities,” STAT.
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