As CDC redesigns annual health survey, it removes questions about disabilities

The CDC's National Center for Health Statistics proposed in August an overhaul of the National Health Interview Survey, the broad federal health survey that has collected data on Americans for researchers and policymakers since 1957. Advocates say the redesign would significantly undercount Americans with intellectual and developmental disabilities. A Department of Health and Human Services spokesperson declined to explain why the disability questions were removed but indicated the changes were driven by a push to lower data collection costs.

Under the redesign, roughly 25,000 households would receive a mailed questionnaire — a slight drop from past surveys — with separate versions for children and adults. The adult questionnaire sees the greatest changes: the proposed revision reduces 482 questions to 150, striking questions about hearing aids, fatigue, cognition, and even mobility supports such as wheelchairs and scooters. Survey questions have primarily captured functional disabilities, such as how well a person sees, hears, or walks, and some researchers say past surveys already undercounted people who are deaf or blind or who use wheelchairs. The gap was particularly glaring for people with intellectual and developmental disabilities, potentially missing 75% of that population, according to a recent paper co-authored by CDC statisticians. More than a quarter of Americans have a disability.

Critics argue the change conflicts with health secretary Robert F. Kennedy Jr.'s stated goal of reducing the burden of chronic disease, since adults with intellectual and developmental disabilities face significantly higher rates of chronic conditions such as heart disease, diabetes, and obesity. "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, a disability scholar and professor emerita at the University of Kansas. Katy Neas, CEO of the advocacy group The Arc, called the changes a "head-scratcher," adding: "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]." Syracuse sociology professor Scott Landes said the proposal leaves advocates "making us choose between bad and worse," and researchers stress that better health outcomes data is critical for this population.