"The proposed redesign of a cornerstone federal health survey threatens to significantly diminish our understanding of disability in America, potentially leaving millions of individuals with specific needs harder to identify and serve."
Federal health officials are undertaking a substantial redesign of the National Health Interview Survey (NHIS), a vital tool for understanding the health and well-being of the U.S. population. Scheduled for implementation in 2028, the proposed changes aim to streamline the survey, reducing its length from 482 questions to approximately 150. While the stated goal is to lower data collection costs and enhance efficiency, critics and disability advocates are raising alarms over the removal of several detailed questions pertaining to various aspects of disability, including hearing aids, fatigue, cognition, and the use of mobility aids like wheelchairs and scooters. This reduction in data granularity could have significant implications for research, policy development, and the allocation of essential services for the millions of Americans living with disabilities.
The National Health Interview Survey (NHIS), a flagship initiative managed by the Centers for Disease Control and Prevention’s (CDC) National Center for Health Statistics (NCHS), boasts a long and distinguished history, having collected critical health data continuously since 1957. Recognized as the nation’s largest and oldest national health survey, the NHIS has undergone significant redesigns only twice before, in 1997 and 2019, reflecting its importance in tracking evolving public health landscapes. However, the proposed 2028 redesign represents a more drastic departure, with a dramatic reduction in the number of questions intended to increase efficiency and reduce operational costs.
According to reports from STAT News, the revised adult questionnaire will retain only about 150 questions, a sharp decrease from its current iteration. The Department of Health and Human Services (HHS), which oversees the CDC, has not provided specific justifications for the elimination of particular disability-related questions, attributing the overall changes to a broader effort to curtail data collection expenses. This move comes at a time when the prevalence of disability in the U.S. is substantial. A 2024 CDC release highlighted that in 2022, more than 70 million U.S. adults, representing over one in four, reported having a disability. The data generated by national surveys like the NHIS is instrumental in informing critical research, shaping public health programs, and guiding the development of services tailored to the needs of these households.
The Scope of Proposed Changes: What’s In and What’s Out
The draft redesign does not signal a complete abandonment of disability assessment within the NHIS. The proposed adult questionnaire will continue to include a foundational set of six questions derived from the Washington Group Short Set. These internationally recognized screening questions aim to identify difficulties in core functional areas: seeing, hearing, walking or climbing steps, remembering or concentrating, self-care, and communicating. This core set is designed to provide a basic measure of disability.
However, the proposed changes mark a significant departure from the detailed data previously collected. For instance, while the basic hearing question addresses difficulty hearing, it no longer includes specific inquiries about the use of hearing aids. Similarly, the redesigned survey will omit distinct questions regarding the use of wheelchairs or other mobility devices, and it will also cease to collect granular data on fatigue. This latter point is particularly concerning given recent findings. A September analysis of 2024 NHIS data, reported by MedicalDaily, indicated that frequent fatigue was most prevalent among adults aged 18 to 34. Without dedicated questions on fatigue, tracking such trends and understanding their implications for younger demographics could become considerably more challenging.
The loss of detail extends beyond these specific examples. Previously, the NHIS might have explored the types of assistive devices used or the specific nature of cognitive challenges. The move to a more generalized set of questions risks creating a less nuanced understanding of the diverse experiences and needs within the disability community. This can have ripple effects, impacting the accuracy of prevalence estimates and the ability to identify specific populations requiring targeted interventions.
The Rationale Behind the Redesign: Cost Savings Versus Comprehensive Data
The CDC has articulated a clear rationale for the proposed NHIS redesign, citing several key drivers. In its official redesign documentation, the agency points to escalating costs associated with survey administration, increasing challenges in reaching potential respondents, and the imperative to develop a more adaptable and efficient data collection instrument. The proposed methodology aims to mitigate these issues by inviting households to participate initially online or via paper questionnaires, with in-person follow-ups conducted by Census Bureau field representatives for non-respondents.
A notice published in the Federal Register on August 20, 2026, explicitly states the objective: "To maintain data quality and contain operational costs, a redesign of the NHIS is being planned for implementation in 2028." The notice further estimates that the redesigned adult questionnaire will require approximately 35 minutes to complete, a significant reduction from the estimated 56 minutes for the 2027 version. This time savings for respondents is presented as a benefit, intended to improve participation rates.
Despite these justifications, disability researchers and advocates express apprehension that the cost savings may come at the expense of a comprehensive understanding of disability. Jean Hall, a distinguished disability scholar and professor emerita at the University of Kansas, voiced concerns to STAT, stating that the proposed cuts would result in "we know less about who is disabled in America and what their experiences are." This sentiment underscores the worry that a less detailed survey may lead to an incomplete picture of the disability landscape, potentially hindering efforts to advocate for and support affected populations.
These concerns are amplified by existing limitations in disability measurement. A 2024 study published in the Disability and Health Journal, led by sociologist Scott Landes of Syracuse University, analyzed NHIS data from 2011-2012. This research revealed that the Washington Group questions identified less than half of the adults who were flagged as disabled by the more extensive questions used in the American Community Survey. Furthermore, the study’s authors pointed out that neither of these existing question sets adequately identifies individuals with intellectual and developmental disabilities, mental health disabilities, or chronic illnesses. While this study predates the 2028 draft, it highlights the inherent challenges in capturing the full spectrum of disability with even more limited instruments.
Unaddressed Gaps and the Path Forward
A critical aspect of the current debate is the lack of clarity from the CDC and HHS regarding how the gaps created by the removal of specific disability questions will be addressed. Neither the CDC’s redesign page nor the Federal Register notice provides information on alternative sources for data on hearing aids, mobility devices, or fatigue once these items are excised from the NHIS. HHS’s refusal to offer specific explanations to STAT regarding the rationale for dropping these items further fuels concern.
The Federal Register notice does indicate a shift in the survey’s design philosophy. The redesigned survey will reportedly move away from a fixed schedule of rotating topics, which allowed for in-depth exploration of specific health issues in certain years. Instead, officials describe the new approach as a move towards a more "agile and dynamic design" that allows for the incorporation of content on "topics of current and emerging interest." While this flexibility could theoretically permit the reintroduction of disability-related questions in the future, the notice does not offer any concrete commitments to restoring the specific measures being cut.
It is also noteworthy that the CDC’s 2022 estimates of adult disability prevalence were derived from the Behavioral Risk Factor Surveillance System (BRFSS), a separate state-based survey. However, the current redesign materials do not specify whether the BRFSS, or any other survey, will be utilized to collect the detailed measures that are being removed from the NHIS.
The potential loss of detailed data could disproportionately affect individuals whose needs are already challenging to quantify. This includes adults with intellectual or developmental disabilities, older adults experiencing hearing loss, and individuals who rely on wheelchairs or other mobility aids. The impact on older adults is particularly relevant; CDC’s 2022 data showed that 43.9% of adults aged 65 and older reported a disability. Without detailed questions, understanding the specific challenges and needs of this growing demographic could become more difficult.
Public Engagement and the Comment Period
It is crucial to note that the proposed redesign is not yet finalized. The Federal Register notice established a public comment period, with written submissions required by October 19, 2026. Interested parties, including researchers, disability advocacy groups, healthcare professionals, and members of the general public, are encouraged to submit comments detailing their use of specific NHIS questions and the potential impact of their removal. Comments can be submitted under Docket No. CDC-2026-1387 via the Federal eRulemaking Portal.
The proposed changes to the NHIS currently do not directly affect individuals’ benefits or their access to healthcare services. The next critical phase to monitor will be the release of the final questionnaire and any subsequent decisions regarding the restoration of dropped disability-related questions. The outcome of this review process will significantly shape the future of disability data collection in the United States and, consequently, the ability of policymakers and service providers to effectively address the needs of millions of Americans.
