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CDC's 150-question health survey would drop items used to count disabled Americans
CDC's National Center for Health Statistics proposes shrinking its health interview survey from 482 questions to 150, dropping cognition and mobility items. Advocates say the shorter form would deepen an undercount of Americans with intellectual and developmental disabilities in a survey run since 1957.
The Scientist · Science desk
What happened
- A recent paper co-authored by CDC statisticians found the survey may already miss 75% of people with intellectual and developmental disabilities.
- A Health and Human Services spokesperson declined to say why disability items were struck but indicated the redesign was driven by a push to cut data-collection costs.
- Roughly 25,000 households would receive a mailed questionnaire, slightly fewer than in past surveys, with separate forms for adults and children.
- Adults with intellectual and developmental disabilities face significantly higher rates of chronic conditions such as heart disease, diabetes and obesity.
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Why it matters
- constraint Chronic-disease tracking for this group would begin from a count that may be a quarter of the real population, and the shorter form leaves fewer items for spotting who was missed.
- cost HHS's saving comes out of detail: each disability item struck is one fewer group researchers can tie to outcomes such as the self-care mortality gap in Landes's 2024 study.
- contradiction The CDC's own survey director wrote that the redesign lacks the desired depth on functioning and disability, a topic named in its authorizing law, while HHS presents the cut as a cost decision.
A survey that may miss three in four members of a group reports a count one quarter the size of the real one. Turned around, the true population could be about four times what the survey records [2]. People with intellectual and developmental disabilities are in that position in the National Health Interview Survey as it stands, before any question is removed [12]. The cause is in how the questions are written. The disability items mostly ask how well a person sees, hears or walks [10], and some researchers suggest even those undercounted people who are deaf or blind or use wheelchairs [11].
The National Center for Health Statistics proposed the overhaul in August [5]. It would remove several disability-related questions, though more than a quarter of Americans have a disability [6]. The question count goes from 482 to 150, a cut of about 69% [1], and STAT reports the adult questionnaire changed most [9]. Among the struck items are questions on hearing aids, fatigue, cognition, and mobility supports such as wheelchairs and scooters [9]. Cognition is the item closest to intellectual disability, so I'd expect the count for this group to drop further. STAT's report does not include an estimate of how far; the warning of significant undercounting comes from advocates [1].
Scott Landes, a sociology professor at Syracuse University, described the position researchers are in. "You're making us choose between bad and worse," he said [13]. A 2024 study he co-authored using the survey's data found that people with a self-care disability, meaning difficulty dressing or bathing, had the highest mortality rates [14]. People with intellectual and developmental disabilities often have that kind of difficulty [14]. The finding is an association drawn from survey answers. It could only be made because the survey asked about self-care.
The agency's own staff wrote down the limits. Stephen Blumberg, director of the CDC division that oversees the survey, published a memo outlining the redesign in 2025. 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." [16] STAT notes that the expected effect runs counter to health secretary Robert F. Kennedy Jr.'s stated goal of reducing the burden of chronic disease [17].
Katy Neas, CEO of The Arc, called the changes a "head-scratcher" [2]. "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 [3]. Landes, who has multiple disabilities including low vision, said: "It seems like we would want more information, not less." [15]
What to watch
- Whether NCHS publishes an estimate of how the 150-question form changes its disability prevalence figures, especially for intellectual and developmental disabilities.
- Whether the final adult questionnaire restores the cognition or mobility-support items struck in the August proposal.
- Whether HHS attaches a dollar figure to the data-collection savings it has cited.