Proposed Census Bureau Changes and the Impact on the Disability Community
Join Us to Learn More
The Urban Institute’s Disability Equity Policy Initiative and the Disability & Philanthropy Forum invite you to join a discussion on February 22 at 1:00pm ET about the need for an accurate count of disabled people in the U.S. and the policy implications of proposed changes. The event will feature remarks from Richard E. Besser, president and CEO of the Robert Wood Johnson Foundation and cochair of the Presidents’ Council of the Disability & Philanthropy Forum, followed by a robust panel of disability experts.
Call to Action
We’re calling on the philanthropic sector to listen to an urgent call to action from the disability community to push back against proposed changes to Census Bureau disability data collection. Good data is essential to equity. And if these proposed changes are implemented, equitable access to services and supports for disabled people will be at risk.
The disability community is currently advocating against these changes in meetings with the Census Bureau. As we await the Bureau’s response, we encourage philanthropic organizations to keep pressure on and elevate this issue to the broader community through the following actions:
- Read and share this report, “No Evidence to Proceed: Justification to Stop the Implementation of the Washington Group Short Set (WG-SS) Questions to Measure Disability in the American Community Survey (ACS).”
- Write a public statement
- Write an op-ed
- Send a letter to Congress
- Amplify through other networks that can have an impact on the Census Bureau
- Provide longer-term funding for disability organizations and researchers to help develop improved measures of disability data that are grounded in the diverse perspectives of disabled people
According to the National Partnership for Women & Families: “A new proposal from the U.S. Census Bureau would change the definition of disability in the American Community Survey — and their own research shows that in doing so, it would reduce the official count of disabled people by 40 percent. Since the American Community Survey is used to help enforce civil rights and to allocate trillions in funding, this change would have significant implications for disabled people.”
Remember: disability is not a niche issue. Despite the fact that the prevalence of disability is already being significantly undercounted, we know that more than a billion people globally have a disability and that disability cuts across all identity groups. To truly achieve social justice, we cannot afford to ignore the growing disability population, and we must view every issue through a disability lens.
Of particular concern to the Disability & Philanthropy Forum is the effect of inaccurate data on philanthropic funding for disability inclusion, rights, and justice. Currently, foundation funding for disability represents approximately only two cents of every foundation dollar awarded. The need to increase this number is urgent — but without data that paints an accurate picture of just how broad the U.S. disability community truly is, we fear this small amount of funding will drop even further.
The following resources offer further information. We encourage you to check this page for updates on how to join us in taking action.
Letters and Statements From Key Stakeholders
- Statement From Richard Besser, MD, on Census Bureau Engagement With Disability Community – Robert Wood Johnson Foundation
- National Council on Disability Letter to Census on Proposed Change to Disability Questions in American Community Survey
- Final Comment on Proposed Revisions to Census Disability Questions – Disability Rights Education & Defense Fund
- Final Sign-On Letter Led by the National Partnership for Women & Families
- Final Comment from Disability Researchers
- The Leadership Conference’s Comments on Proposed Updates to the ACS Disability Questions
Articles About Proposed Changes
- The “Hot Button” Issues: An Update on Census & ACS Questions – Funders Committee for Civic Participation
- A controversial Census Bureau proposal could shrink the U.S. disability rate by 40% – NPR
- The next Census could undercount the number of disabled Americans by 20 million – Stat News
- Proposed Census Changes Would Drastically Undercount Disabled Americans – Urban Institute
- New Census proposal would reduce the number of disabled women and girls counted by nearly 10 million – National Partnership for Women & Families