Disability data is on the chopping block. Take action by October 19: The CDC wants to overhaul the National Health Interview Survey (NHIS), the nation's flagship source of data on health, health care access, and health behaviors. For disabled people, it's one of the few places we show up in the numbers at all.
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The proposed 2028 redesign would gut that picture:
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Adults with intellectual and developmental disabilities could vanish from the data. The questions that identify adults with IDD would be cut, even as the child survey keeps its IDD questions.
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Key disability details disappear. Mobility equipment and assistance, fatigue, age of disability onset, and detailed cognition and upper-body function would all be dropped.
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The survey goes online-first. Households would self-complete on the web or on paper before any interviewer follows up, and disabled people are less likely to have the technology that requires.
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The remaining disability measure is a problem. The survey still relies on a disability screener that research shows severely undercounts disabled adults.
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If these changes go through, researchers, advocates, and policymakers will lose the data needed to track health and mortality disparities among disabled people. We can't address what we can't count.
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Take action now: Public comments shape what happens next, and they don't need to be long or technical. Even a few sentences about why this data matters to you, your work, or your community make a difference.
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Submit a comment by October 19
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New to this? Read the CDC's description of the proposed changes
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Helpful crosswalk of disability data in current and proposed survey is on the HSRI website.
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Want to see what others are saying? Browse the comments already posted
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Co-Founder, Disability Health Equity Research Network (
DHERN)
314 Lyman Hall
Syracuse, NY 13244
Syracuse University