A proposed redesign of the federal government’s annual health survey would result in significant undercounting of Americans with intellectual and developmental disabilities, according to advocates for the vulnerable population.
The National Health Interview Survey has historically undercounted people with disabilities, but the changes are a “head-scratcher,” said Katy Neas, CEO of The Arc, an advocacy group. “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],” she said.
The proposed changes, and its expected impact, runs counter to health secretary Robert F. Kennedy Jr.’s stated goals of reducing the burden of chronic disease. Adults with intellectual and developmental disabilities face significantly higher rates of chronic conditions such as heart disease, diabetes, and obesity.
In August, the Centers for Disease Control and Prevention’s National Center for Health Statistics proposed an overhaul of the National Health Interview Survey, which has been collecting a broad range of Americans’ health data for researchers and policymakers to make use of since 1957. The overhaul would remove several disability-related questions, even though more than a quarter of Americans have one.
A spokesperson for the Department of Health and Human Services declined to answer questions about why questions tracking certain disabilities were struck from the redesign, but indicated that the changes were driven by a push to lower the cost of data collection.
“It just feels like there’s one hit after another [from the Trump administration] and this particular hit would make it so that we know less about who is disabled in America and what their experiences are, and therefore we don’t have to worry about providing programs or supports for them,” said Jean Hall, disability scholar and professor emerita at the University of Kansas.
With this redesign, roughly 25,000 households will receive a mailed questionnaire — a slight drop from past surveys — with separate questionnaires for children and adults. The adult questionnaire saw the greatest changes. The proposed changes include reducing 482 questions to 150 questions, striking questions about hearing aids, fatigue, cognition, and even mobility supports like wheelchairs and scooters.
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.
“You’re making us choose between bad and worse,” said Scott Landes, a sociology professor at Syracuse University.
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 feels as if our government doesn’t care about the well-being of disabled people, doesn’t care about the well-being of folks with some of the worst health outcomes,” said Landes, who has multiple disabilities, including low vision. “It seems like we would want more information, not less.”
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?”
STAT’s coverage of disability issues is supported by grants from Robert Wood Johnson Foundation and The Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.