Recent shifts in the federal approach to collecting and using data have raised new concerns about the future of how we measure and understand disabled people, their experiences, and their protections.

The Informing Federal Disability Data Measurement project initially sought to learn more about how federal agencies define and measure disability in their work, including in surveys, administrative data, and program implementation. Then in 2025, amid federal changes to programs and data collection, we convened a roundtable of disability measurement stakeholders to assess the implications of the current moment, discuss emerging threats and gaps in disability data, and identify key priorities. This brief shares insights from the roundtable and follow-up survey and stakeholders’ assessments of the biggest risks and priorities for disability research and advocacy.

Why This Matters

Access to complete and inclusive data on the experiences of people with disabilities is essential for informing public resource allocation, local planning, and enforcement of civil rights law. Understanding disability measurement stakeholders’ perspectives on the implications of emerging cuts to programs serving disabled people, potential changes to how federal agencies measure disability, and potential reductions in federal data collection can help clarify shared risks, coordinate better responses, and inform future funding and research strategies.

What We Found

• When asked to select three top disability research and priority areas for the next 6 to 12 months, respondents most often selected influencing federal policy and funding decisions, protecting data privacy and preventing data misuse, and ensuring disabled people could inform research agendas.
• When asked to rank disability policy and research priorities by level of urgency, respondents ranked protecting critical federal programs and services, advancing civil rights for people with disabilities, and protecting federal survey data collection as most urgent.
• Regarding which areas of disability research felt most urgent, respondents identified research on health and health equity, access to home and community-based care, and employment and economic security.
• Regarding their concern about issues related to disability data, respondents were most concerned about the removal of existing federal data sources, the discontinuation of federal surveys and data collection, and the potential misuse or misrepresentation of disability data.

How We Did It

We used data from two sources: a roundtable with key disability stakeholders held in July 2025, and a follow-up survey. For the roundtable, we identified 52 disability researchers, advocates, service providers, researchers, and nonprofit staff based on our working knowledge of the field through previous work, networks, and relationships to invite to discussions about disability measurement and data, recent federal changes, and priorities for future work (27 participated). In October 2025, we fielded a survey to the same 52 people to assess current and near-term risks to disability research, data, and policy. Twenty-seven stakeholders responded to the follow-up survey.