For disabled people, being counted in government health data is about more than statistics. It is about whether our experiences are recognized, whether health disparities are understood, whether researchers have the information they need, and whether policymakers can identify where services and supports are most needed. When disability data disappears, part of the picture of how millions of disabled Americans experience healthcare and public health systems disappears with it.
That is why proposed changes to the Centers for Disease Control and Prevention’s National Health Interview Survey (NHIS) are raising concerns among disability advocates and researchers. For decades, the NHIS has been one of the federal government’s primary sources of information about the health of Americans. The survey collects information on health conditions, access to care, disability, functioning, and other factors that help researchers understand health trends and identify disparities across different populations.
Beginning in 2028, the CDC is proposing a major redesign of the survey. One of the most significant changes would reduce the number of questions asked of adults from approximately 482 to about 150. According to the agency, the redesign is intended to modernize the survey, reduce respondent burden, improve efficiency, and address the rising costs of collecting nationwide health data.
Those goals are understandable. Public health agencies face real challenges in collecting comprehensive data, and modernization is often necessary. The concern is that important disability-related information could be lost in the process.
According to reporting from STAT and Disability Scoop, the proposed redesign would reduce or eliminate questions related to hearing aid use, fatigue, cognition, mobility, and the use of equipment such as wheelchairs and scooters. Researchers have also expressed concern that the changes could make it more difficult to identify people with intellectual and developmental disabilities in survey data.
That matters because disabled people, particularly those with intellectual and developmental disabilities, have historically been underrepresented in health research. If researchers lose reliable ways to identify disabled people within federal data, it becomes harder to understand health needs, track disparities, and evaluate whether policies and services are working as intended.
Data often makes inequities visible. Researchers use disability data to study health outcomes and barriers to care. Policymakers rely on it to determine where resources may be needed. Disability organizations use it to advocate for stronger services, greater accessibility, and policy reforms.
Without reliable data, those efforts become more difficult. The challenges disabled people face do not disappear simply because they are no longer measured. They can, however, become easier for organizations to overlook.
Advocates have also raised concerns about the survey’s proposed shift toward online and paper questionnaires. While that approach may be convenient for many participants, some disabled people may face barriers related to accessibility, communication, or the need for accommodations.
Accessibility is not separate from data collection. If disabled people cannot fully participate in the survey, their experiences may not be reflected in the results.
The CDC has emphasized that the redesign is intended to improve efficiency while reducing costs and respondent burden. Yet efficiency should not come at the expense of visibility. Modernizing health data collection and preserving meaningful disability data should not be competing goals.
Being counted is not about reducing disabled people to numbers. It is about ensuring that disabled people remain visible in the information that shapes healthcare policy, research, public health initiatives, and funding decisions. Accurate data will not solve every challenge facing the disability community, but without it, many of those challenges become far more difficult to document, understand, and address.
Disabled people should not be treated as less important simply because a survey is being redesigned. If our experiences matter, they must remain part of the data.
Sources:
Diament, Michelle. “CDC Plans To Drop Disability Questions From Federal Health Survey.” Disability Scoop, 5 Oct. 2026, https://www.disabilityscoop.com/2026/10/05/cdc-plans-to-drop-disability-questions-from-federal-health-survey/32208/.
Broderick, O. Rose. “As CDC Redesigns Annual Health Survey, It Removes Questions about Disabilities.” STAT, 1 Oct. 2026, https://www.statnews.com/2026/10/01/cdc-health-survey-redesign-removes-questions-about-disabilities/.