Advocates warn that the CDC's proposed 2028 redesign of the National Health Interview Survey, which would cut disability-related questions from 49 to 15 and shift many respondents to paper or online completion, could make it harder to identify people with developmental disabilities in the data.

The CDC cites rising costs and difficulty reaching households, while a Department of Health and Human Services spokesperson called the update routine. 

The proposal is particularly alarming since the existing survey is already flawed, said Scott Landes, professor of sociology and co-founder of the Disability Health Equity Research Network.

“Studies using the survey’s own data show it misses about half of the disabled adults the federal standard for measuring disability identifies. It counts a quarter of wheelchair users as not disabled, along with 36% of blind adults and 44% of deaf adults. Researchers caught this only because the survey also asks about things like equipment use and hearing aids,” he says. “The worse news is that a proposed 2028 redesign cuts those questions, so the flawed screen becomes the only way to identify disabled people.”

Read more in the Disability Scoop article, “CDC Plans To Drop Disability Questions From Federal Health Survey.”