The Centers for Disease Control and Prevention is proposing a redesign of the National Health Interview Survey that would eliminate questions about disabilities, potentially leading to a significant undercount of Americans with intellectual and developmental disabilities.
Changes to the Survey
The proposed overhaul would reduce the adult questionnaire from 482 questions to 150, removing inquiries about hearing aids, fatigue, cognition, and mobility supports like wheelchairs and scooters. This shift would impact roughly 25,000 households receiving the mailed survey.
Department of Health and Human Services officials indicated the reduction is driven by a desire to lower the cost of data collection. However, the changes contradict stated goals of reducing the burden of chronic disease, as adults with intellectual and developmental disabilities face significantly higher rates of heart disease, diabetes, and obesity.
The National Center for Health Statistics has collected broad health data for researchers and policymakers since 1957. The proposed changes come after more than a quarter of Americans have a disability, according to the agency’s own statistics. The questions used in the survey primarily capture functional disabilities, such as how well a person sees, hears, or walks. Some researchers suggest that past surveys already undercounted people who are deaf or blind or use wheelchairs. But the data gap was particularly glaring for people with intellectual and developmental disabilities, potentially missing 75% of the population, according to a recent paper co-authored by CDC statisticians.
Undercounting Risks
Advocacy groups argue the changes will create a dangerous data gap. Katy Neas, CEO of The Arc, called the decision a “head-scratcher,” noting that without a trusted source of data, it is impossible to improve health outcomes.
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Scott Landes, a sociology professor at Syracuse University, described the move as choosing between “bad and worse.” He noted that people with a “self-care disability” have the highest mortality rates, yet the survey will now provide less information on this vulnerable group.
According to the CDC, the proposed questionnaire will still capture functional limitations, such as difficulty seeing or hearing, but will strip away critical details about specific disability types. Getting better health outcomes data is critical for this population. Although many people in the disability community face serious health disparities, people with a “self-care disability” — meaning they have difficulty dressing themselves or bathing themselves, as people with intellectual and developmental disabilities often do — had the highest mortality rates, according to a 2024 study using National Health Interview Survey data that Landes authored.
It seems that CDC staff are aware that these changes will impact the agency’s ability to track the disability community. In 2025, Stephen Blumberg, the director of the CDC division that oversees the survey, published a memo outlining the redesign. In a footnote, he wrote, “It 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.”
Some people in the disability community see this survey redesign as the latest indignity from a Trump administration that has repeatedly targeted disabled people’s health and wellbeing, including laying off scores of federal employees with disabilities or rolling back protections that prioritized people with disabilities living in their communities.
“Data collection isn’t that sexy, but it’s absolutely essential for decision-making, right?” said Neas, of The Arc. “If we don’t have [real information], how are we supposed to make a decision that could either help or not help somebody?”
