On September 30, the U.S. Census Bureau had the privilege of convening with more than 100 disability community stakeholders in person and online in a meeting co-hosted with the Office of Management and Budget, the National Center for Health Statistics, the National Council on Disability, The Leadership Conference Education Fund, and the Consortium for Constituents with Disabilities’ Health Task Force.

Through this gathering of federal agencies, data users, disability advocates, community representatives and stakeholders, we sought diverse perspectives of people in the disability community and heard about their lived experiences and how they relate to disability measurement. Together, we held a robust discussion on federal disability measures including strengths and limitations. This provided a genuine opportunity for mutual learning.

I’d like to say “thank you” again to everyone involved in bringing us together and to all who participated, sharing their perspectives. It was powerful to learn from the community and to consider the federal government’s role and responsibility in providing quality data about and for this diverse population. I am grateful for the passionate engagement that included personal stories and thoughtful, practical recommendations.

Several participants shared personal, firsthand experiences that underscored the importance of having accurate, representative data – especially against the backdrop of the impacts suffered by many in the disability community during the COVID-19 pandemic and natural disasters like Hurricanes Helene and Milton. As the meeting’s panelists so eloquently said, accurate data help people access services that help them survive and thrive. Being reflected in federal statistical data is crucial for effective policy development. 

These words can’t do justice to the rich day of discussion. But with this blog, we would like to recap three of the themes we heard repeatedly throughout the day: defining disability is complicated; representation matters; and disability measures are much bigger than any one agency or survey.

Throughout the day, there was vibrant discussion around defining disability. If we’re going to measure disability effectively, we need to know that we’re measuring what we intend to measure and that we understand what it means.  Participants shared insightful, divergent visions of disability as a construct.

Panelists shared different models for defining disability. The discussion tended to center on two (that some participants suggested could be used in combination): defining disability in terms of functional limitations and defining disability as a self-identified demographic characteristic akin to age or gender. Both definitions were acknowledged to be important, albeit different.

Each comes with its own set of complexities and nuances. For example:

• While most federal agencies find the American Community Survey’s data on functional limitations useful for their work, others like the Social Security Administration, the Equal Employment Opportunity Commission, and the Veteran’s Administration need and use additional measures depending on the services they provide or the legal protections they enforce. Disability advocates and researchers also expressed varied data needs.
• If disability is measured as a self-identified demographic characteristic, what does it mean when populations with functional limitations – such as older adults with vision or hearing difficulties or wounded veterans with mobility issues – do not consider themselves disabled?

We also considered the following questions:

• Who decides how disability is ultimately defined? Should there be multiple definitions to serve multiple purposes?
• What information is best suited for policy development or for providing specific services such as evacuation assistance ahead of natural disasters/emergencies?
• Beyond measuring identity or functional limitations, should we be capturing data on barriers and supports?

This is a sample of the important questions raised at the September 30 convening. We recognized that the responses to them could ultimately impact who is included or excluded from disability statistics.

The lack of consensus around defining disability flowed into a second theme of the day: representation matters. People who are disabled want and need to be represented in the data and in the process that shapes what data are collected.

It was clear and worth underscoring that the disability community is not a monolith. It is vibrantly diverse in many ways, such as, type of disability, race and ethnicity, sexual orientation and gender identity, age, education, and income. It’s important that the whole of this diverse community is included – and that the data capture how these diverse identities and experiences intersect.

We also heard “nothing about us without us.” It is fundamental that the disability community is involved in any efforts that are about or for them. We affirm and acknowledge that it is important to consider input from this community on disability measurement.

Over the course of the convening, the clarity sharpened around the enormity of the challenge of usefully defining disability and representing the diversity of the disability community. We know these issues are much larger and transcend the resolution of what questions to ask in the ACS.

Public feedback in response to proposed changes to the ACS disability questions prompted this gathering. Yet, it is starkly apparent the issues we must address go beyond the ACS questions and involve various federal agencies.

Indeed, the ACS has a unique role in providing data for small populations and low levels of geography on a wide variety of topics. It also has unique constraints in that there must be a legal or statutory need requested by a federal agency for the data it collects. The ACS will continue to be part of the mix. But there are other, more inclusive venues to address the broader measurement issues surrounding disability.

Effectively addressing disability as a data asset and determining the most relevant and useful ways to measure it requires a government-of-the-whole approach – one that involves multiple federal agencies including those that serve the disability community. It also requires a broad, community-of-the-whole approach – one that involves members of the disability community, disability advocates, researchers, etc.  

With the above themes in mind and the insights gleaned from the convening, a few immediate next steps are as follows:

• The ACS will continue to use the current disability questions in 2025 and 2026. Beyond that, we’ll consider the full breadth of what is the best fit for measuring this topic on the ACS. Nothing will change without continued engagement with and input from the disability community. We invite you to sign up to receive email updates about the ACS and other topics from the Census Bureau.
• More broadly, the Census Bureau in collaboration with the Interagency Council for Statistical Policy is also reviewing the ACS content revision process.
• It’s important that our engagement and conversation expand to a necessarily broader perspective. The National Science and Technology Council’s Disability Data Interagency Working Group – co-chaired by the White House Office of Science and Technology Policy and the National Institute on Disability, Independent Living, and Rehabilitation Research – is leading the way for the federal government to improve federal disability data. As we heard during its presentation at the convening, the group is tasked with developing a Federal Evidence Agenda on Disability Equity, which it plans to release in November 2024. The goal is to improve the federal government’s ability to make data-informed policy decisions that advance equity for the disability community. The working group has hosted extensive listening sessions, conducted in-depth interviews and requested public input. Along with other federal agencies, the Census Bureau, the National Center for Health Statistics and the National Council on Disability are proud and active members of this working group.

Community engagement is an essential part of providing useful, high-quality data, and we are endeavoring to be more intentional about it. The September 30 gathering marked an important milestone in ongoing community engagement.

As I hope this blog illustrates, our conversations were productive, insightful, and demonstrated the power of convening. Such engagement will continue. If you didn’t attend or tune into the session online, I invite you to access the recording – which includes Communication Access Real-Time Translation (CART) captions and American Sign Language (ASL) interpreters.