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

Americans with disabilities worry about proposed changes to major national health survey The federal government plans to dramatically shrink the size of its National Health Interview Survey, sparking concerns about underestimating disability rates Washington, D.C. – In a move that could reshape how disability statistics are gathered in the United States, the Department of Health and Human Services (HHS) has announced plans to reduce the National Health Interview Survey (NHIS) by up to 50 %. The NHIS, a cornerstone of public health data since 1957, provides critical insights into the prevalence and impact of disability among Americans..

Advocates for people with disabilities warn that the downsizing could lead to significant under‑reporting, jeopardising funding, policy planning and service provision for a population already facing systemic barriers. The NHIS has long been hailed as the gold standard for measuring health status, access to care and disability prevalence. Each year, it surveys a nationally representative sample of roughly 20,000 households, gathering detailed information on medical conditions, functional limitations and health‑behaviour patterns..

The data feed into federal programs such as Medicaid, the Americans with Disabilities Act (ADA) enforcement mechanisms and disability‑focused research grants. A shrink in its scope threatens to diminish the granularity of data that informs both public and private decision‑makers. According to a memo released by HHS, the proposed changes aim to cut survey costs by approximately $60 million annually..

The agency plans to reduce the number of households surveyed, shorten the interview duration and eliminate several modules that currently assess mobility, cognition and social participation. While cost savings are touted, critics argue that the trade‑off could be a loss of critical nuance—especially for people with invisible or intermittent disabilities that require longer, more detailed questioning. “Disability is not a one‑size‑fits‑all category,” said Maria Hernandez, director of the National Disability Rights Network..

“If we lose the modules that capture cognitive or sensory impairments, the survey will miss a large portion of people who rely on community services and who are often under‑represented in the data.” Hernandez added that the NHIS’s previous iterations had been instrumental in highlighting disparities in disability prevalence between racial and socioeconomic groups, thereby guiding targeted interventions. The proposal has triggered a flurry of activity among disability advocacy groups. Over 120 organisations, ranging from the National Federation of the Blind to the Center for Disability Studies, have signed a joint letter to HHS requesting a full review of the draft..

In the letter, the groups cite evidence that the NHIS has historically provided the most reliable data on disability prevalence, and that reductions in sample size would disproportionately affect rural, low‑income and minority communities—groups that already face higher rates of disability and limited access to services. Federal officials have defended the plan as a necessary step toward a more efficient data collection system. Emily Porter, HHS’s Assistant ary for Public Health, stated in a press briefing that the agency is exploring alternative data sources, such as administrative records and the Behavioral Risk Factor Surveillance System (BRFSS), to compensate for the loss of detail..

She noted that “modern data‑collection methods, including computer‑adaptive testing, could potentially reduce interview time without sacrificing depth.” However, skeptics point out that administrative data are often incomplete or biased. “We cannot rely solely on claims or medical records to capture the full picture of disability,” warned Dr. Thomas Nguyen, a health‑policy professor at Columbia University..

“Many people with disabilities do not access medical services regularly, and those who do often face gaps in coverage that obscure their true status in the data.” Nguyen’s research, published last year in the American Journal of Public Health, found that reliance on claims data could under‑estimate disability prevalence by as much as 15 %. The NHIS’s role extends beyond federal programs. State agencies and private insurers use the data to benchmark outcomes, design community outreach initiatives and evaluate the effectiveness of accessibility interventions..

A reduction in survey depth could compromise the ability of these stakeholders to measure progress against national goals, such as the American Rescue Plan’s disability inclusion targets. The American Association of People with Disabilities (AAPD) has called for a public hearing to discuss the proposal. “We need transparent deliberation involving all affected parties,” said AAPD chairperson Linda Chang..

“The voices of people who experience disability daily must be heard before we make a decision that could diminish their representation in national statistics.” Chang highlighted that the AAPD’s own research indicates that people with disabilities are under‑represented in the NHIS due to accessibility challenges during the interview process. HHS’s planned schedule for the changes remains uncertain. The agency has requested comments on the draft by the end of September, with a public hearing slated for early October..

The deadline for public comments coincides with the 2025 census, raising concerns about potential data gaps in a period when federal funding and policy decisions often rely on census‑derived estimates. Critics argue that the timing could create a double‑layered erosion of accurate disability data. Meanwhile, the Centers for Disease Control and Prevention (CDC) has expressed willingness to collaborate with HHS to maintain data quality..

An internal memo from the CDC’s Office of Global Health indicates that the agency could share insights from the BRFSS and other surveillance systems to fill gaps left by the NHIS shrinkage. “Our priority is to ensure that disability data remain robust and actionable,” the memo read. “We are exploring cross‑walks and statistical adjustments to preserve comparability.” In the meantime, disability advocates are preparing contingency plans..

A coalition of community organisations has begun piloting a small‑scale, mobile survey that uses tablet‑based interviewing and audio‑visual aids to improve accessibility for people with hearing, vision and motor impairments..