Americans with disabilities worry about proposed changes to major
national health survey
[October 15, 2026]
By MIKE STOBBE
NEW YORK (AP) — The federal government is planning to dramatically
shrink its most influential health survey, and some researchers worry
that the changes will underestimate how many Americans are disabled.
At least half the survey questions could be axed. The cost-saving change
is part of an ongoing effort to slim down the 69-year-old National
Health Interview Survey, which for years has been suffering from
declining response rates.
As many as a quarter of wheelchair users and more than a third of people
who are blind or deaf could be miscategorized as not disabled because of
the shorter survey, according to some advocates and researchers. That
could leave the government unable to recognize the health needs of many
disabled Americans, or the damage caused by changes to Medicaid or other
health insurance programs, they say.
The cuts are being ironed out and officials predict the whittling won't
be as severe as what's been suggested in earlier proposals.
Questions that have been proposed for removal deal with memory, fatigue,
arthritis, difficulty walking and climbing stairs, as well as others
about the use of hearing aids, canes, wheelchairs and scooters.
“We just won't know any of that anymore,” said Scott Landes, a Syracuse
University sociology professor who researches people with disabilities.
Officials are still determining exactly how much cutting will take
place. Currently, the survey has 490 health questions for adults. U.S.
officials expect that the 2028 questionnaire will have about 200 to 225
questions, said the Centers for Disease Control and Prevention's Stephen
Blumberg, who oversees the survey.
U.S. Census Bureau workers conduct the survey every year on behalf of
the CDC. It’s a $40 million annual project, and around 30,000 households
answer the questions each year.
Their answers have shaped the public’s understanding of topics including
how common chronic fatigue syndrome is, how many people get X-rays, what
proportion of U.S. children suffer seizures, and how many Americans have
health insurance. The survey’s responses also are the foundation of how
we measure the nation’s progress — or backsliding — on problems such as
obesity and smoking.
Fewer people are interested in participating in such surveys. And the
National Health Interview Survey is particularly daunting, as it can
take an hour or more and has traditionally involved an in-person
interviewer asking the questions.
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A man in an electric wheelchair crosses Pike Street in downtown
Cynthiana, Ky., on June 23, 2025. (AP Photo/Michael Swensen, File)
 The planned redesign should cut it
to about a half hour, Blumberg said.
“People are busy. They're more protective of their privacy, and some
don't trust the government to protect their data and use it only for
statistical purposes,” he said. “Fewer people see sharing
information with the government as their civic duty.”
The survey was first conducted in 1957, and has been updated every
15 to 20 years. The latest update was put into the field seven years
ago, prompting some advocates to ask why it was being changed so
quickly.
The U.S. Department of Health and Human Services and the White House
Office of Management and Budget were behind dramatic staff
reductions, research funding overhauls and other federal health
agency changes under the current Trump administration. But neither
ordered this redesign, Blumberg said.
Rather, the factors driving the current redesign include tightening
budgets and difficulties fielding enough workers to do so many
in-person interviews — which was affected last year by a federal
hiring freeze.
Another factor: The Census Bureau is reconfiguring its data
collection platforms for the 2030 census in a way that affected the
health survey, he said.
Related to all that is a proposed change in how the health survey is
conducted. Instead of starting with in-person or telephone
interviews, people will receive an invitation to fill out the survey
online or to fill out a paper questionnaire. That's because
in-person interviews have proven difficult with the proliferation of
gated communities, locked buildings without door attendants and
doorbell cameras, according to officials.
However, Census Bureau staff will visit homes for a smaller second
round of surveying, Blumberg said.
A notice about the survey redesign appeared in the Federal Register
in August, opening a public comment period that runs through Oct.
20.
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