O. Rose Broderick at STAT:
A proposed redesign of the federal government’s annual health survey would result in significant undercounting of Americans with intellectual and developmental disabilities, according to advocates for the vulnerable population.
The National Health Interview Survey has historically undercounted people with disabilities, but the changes are a “head-scratcher,” said Katy Neas, CEO of The Arc, an advocacy group. “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.
...
In August, the Centers for Disease Control and Prevention’s National Center for Health Statistics proposed an overhaul of the National Health Interview Survey, which has been collecting a broad range of Americans’ health data for researchers and policymakers to make use of since 1957. The overhaul would remove several disability-related questions, even though more than a quarter of Americans have one.
...
With this redesign, roughly 25,000 households will receive a mailed questionnaire — a slight drop from past surveys — with separate questionnaires for children and adults. The adult questionnaire saw the greatest changes. The proposed changes include reducing 482 questions to 150 questions, striking questions about hearing aids, fatigue, cognition, and even mobility supports like wheelchairs and scooters.
The questions used in the survey primarily capture functional disabilities, such as how well a person sees, hears, or walks. Some researchers suggest that past surveys already undercounted people who are deaf or blind or use wheelchairs. But the data gap was particularly glaring for people with intellectual and developmental disabilities, potentially missing 75% of the population, according to a recent paper co-authored by CDC statisticians.
“You’re making us choose between bad and worse,” said Scott Landes, a sociology professor at Syracuse University.
