How do we best support the health needs of diverse disability communities? What can we do to provide inclusive and affirming care, while removing barriers? Determining the answers to these questions calls for data collection that reflects a broad definition of disability, and allows for comparison across other demographic groups, like race. At least 1 in 4 Americans are part of the disability community. Better data collection is a way toward improving outcomes in health and service provision. In this next installment in our policy priorities blog series, we’re looking into the importance of disability data to advance inclusive health research.
The State of Disability Research
High-quality data collection is the foundation of actionable disability health research. Over the last few years, tremendous work has been done to advance the vision of making disability a federal research priority. A series of major developments traces how this progress has begun to enter the public sphere:
- September 2023 – NIH designated people with disabilities as a health disparities population. This demonstrated a commitment for further NIH research to address health barriers for people with disabilities, and marked the culmination of years of advocacy on the issue.
- Fall 2023 – The U.S. Census Bureau proposed changes to their disability survey questions which would have severely reduced the total count of people with disabilities nationwide. These proposed changes, developed with limited community engagement, could have reduced disability estimates by up to 40%.
- February 2024 – The Census Bureau paused potential changes to the ACS disability questions in response to community advocates and public pressure. The existing disability survey is retained.
- September 2024 – The Census Bureau hosted a convening of over 100 disability researchers and advocates to listen to concerns about proposed changes to the American Community Survey disability questions.
- January 2025 – The Disability Data Interagency Working Group released their Federal Evidence Agenda on Disability. This report emphasizes key areas where disability data collection can be improved, including around health and health care access, long-term services and supports, and community living. This roadmap offered a vision for collecting data that serves the disability community.
- Ongoing – Throughout this same time period, there was been a growing amount of scholarship highlighting the shortcomings of existing disability measures with specific analyses of what subgroups are or are not captured by certain question sets (Research Highlights referenced in blog notes) as well as ongoing work to explore new ways to ask disability related questions.
A strong roadmap for improving outcomes for people with disabilities is highlighted in the Federal Evidence Agenda on Disability. This document indicates the federal government’s role in collecting the right evidence to improve programmatic supports and overcome barriers that might reduce community participation for the disability community. Data-informed decision-making is at the heart of this vision. Within the health agenda, better data was requested to support the transition from pediatric to adult disability programs. Uptake of accessible health promotion and public health emergency programs was mentioned for further study as well. In order to improve the implementation of community living and long-term services and supports (LTSS), the report calls for data collection on community participation measures, like how people with disabilities engage in local arts, athletics and recreational programs. It also calls for a deeper assessment of LTSS programs and needs across the country. This agenda was released on January 19, 2025. Now at the start of a new administration, disability data collection faces some major challenges and roadblocks.
Disability Data in Current Times
In a time when data drives nearly every policy decision, one critical area continues to be neglected: disability data. The future of comprehensive disability data collection is increasingly uncertain, as many programs that once provided this foundational information are now paused, eliminated, or undergoing restructuring. These disruptions not only slow our progress but risk erasing years of valuable longitudinal data—information that policymakers desperately need to understand health trends among people with disabilities, plan for future services, and implement effective interventions.
Longitudinal data is essential to track what works, what doesn’t, and where taxpayer dollars can be most efficiently spent. When disability data is compromised, so too is the ability of federal and state policymakers to make informed decisions about resource allocation. These insights are not just numbers; they directly shape access to health care, housing, education, and employment opportunities for millions of Americans.
At the federal level, uncertainty reigns. The U.S. Census Bureau, which plays a vital role in capturing nationwide disability data, has seen leadership changes and has yet to clarify whether previously paused updates to disability-related questions will be revisited or abandoned. A lack of transparency and urgency sends a dangerous message: that understanding and serving the disability community is optional, not essential.
Meanwhile, programs that support health and community living—such as Medicaid—face proposed funding cuts that could gut services for thousands. At the intersection of these threats lies a disturbing reality: both data collection and the services that rely on it are on the chopping block. When these programs falter, people with disabilities are left more vulnerable to medical debt, unmet health needs, and systemic inequities. And, we risk not having accurate data to report on these impacts, trends and gaps.
Disability advocates across the country are sounding the alarm. Enhanced state-level disability data collection is a public health necessity. Accurate, timely data informs better policies and helps target interventions that can improve lives and save money. If we are serious about achieving health equity, then investing in robust disability data collection must be a priority, not an afterthought. Especially when it comes to deciding the future of disability data collection at a federal level, we need a clear path forward.
Our last post in this series focused on the work needed to advance care for Dual Eligibles receiving care through Medicare and Medicaid. Follow our Policy Updates and the Disability & Public Health Newsletter to stay on top of our current advocacy on these issues.
Relevant Disability Data Research
Disability Data Equity Research Working Group – Resources
Working group of the Disability Health Equity Research Network (DHERN) that engages in cooperative research on disability data equity. They maintain a running list of suggested readings on disability measurement equity.
Goddard, K.S, & Hall, JP. (2025). Limitations of the Washington Group Short Set in capturing moderate and severe mobility disabilities. Health Affairs Scholar, 3(2), qxaf015.
Landes, S. D., Hall, J. P., Swenor, B. K., & Vaitsiakhovich, N. (2025). Comparative
performance of disability measures. PloS one, 20(1), e0318745.
Abstract: Researchers and federal agencies are currently discussing the best way to measure disability in US federal surveys. One idea being discussed is expanding/ supplementing the question sets commonly used to capture disability status in order to better capture a broader segment of the disabled population. We used data from the 2010–2018 National Health Interview Survey to examine the performance of questions commonly used to measure disability in the US–the ACS-6 and Washington Group Short Set questions–in capturing intellectual and developmental disabilities, mental health disabilities, and physical health disabilities. We found that neither set of disability questions was sufficient to fully capture these disability statuses. We contend that current disability questions used in US population surveys must be expanded/supplemented in order to increase the inclusiveness of disability measurement, and thereby, improve efforts to reduce disparities experienced by the disabled population.
Landes, S. D., Hall, J. P., Swenor, B. K., & Vaitsiakhovich, N. (2024). Counting disability in the National Health Interview Survey and its consequence: Comparing the American Community Survey to the Washington Group disability measures. Disability and Health Journal, 17(2), 101553.
The objective of the National Health Interview Survey (NHIS) is to provide data that can be used to monitor the health of the US population. In this study, we evaluate whether the disability questions currently used in the NHIS – the Washington Group questions – threaten the ability of this survey to fulfil its stated objective for disabled people. Methods – Data were from the 2011–2012 NHIS with linkage to mortality status through 2019. We examined whether people who reported a disability in the American Community Survey disability questions had their disability counted in the Washington Group questions. We then examined the consequence of use of the Washington Group as opposed to the American Community Survey questions, on estimates of disability prevalence and comparative mortality risk. We find that when compared to their predecessor, the American Community Survey disability questions, the Washington Group questions accounted for less than half of disabled people, primarily counting disabled people with more than one disability status, but not counting many disabled people with only one disability status. As a result of this undercount, disability prevalence rates based on the Washington Group questions underestimate the size of the disabled population in the US, and overestimate the comparatively higher mortality risk associated with disability status. These results underscore the need to re-evaluate the disability questions used in the NHIS, and invest in the development of improved and expanded disability questionnaires for use in national surveys.