Americans with disabilities worry about proposed changes to major national health survey

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.

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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