NCD joins Census Bureau for disability data stakeholders convening

For Immediate Release

Oct. 4, 2024

WASHINGTON – The National Council on Disability took part in a meeting Sept. 30 with the U.S. Census Bureau and other agencies to discuss collection of disability data.

The Census Bureau Stakeholder Convening on Disability Data Needs at the American Educational Research Association (AERA) Convening Center in Washington, D.C. was an event to better understand data collection processes related to people with disabilities. It was co‑sponsored by the Census Bureau, NCD, the Office of Management and Budget (OMB), the National Center for Health Statistics, The Leadership Conference Education Fund, and the Consortium for Constituents with Disabilities’ Health Task Force.

The event brought together federal agency staff, disability stakeholders and community representatives, data users, and disability advocates.

“At the Census Bureau, we’re committed to producing statistical data that reflects an accurate portrait of our nation,” said Census Bureau Director Robert Santos in his opening remarks. “We take our public service very seriously, and that is part of the reason why we are here today,”

In late 2023, Census officials released a proposed plan changing the current disability questions in the American Community Survey to the Washington Group Short Set of disability questions in the 2025 American Community Survey and Puerto Rico Community Survey. The agency’s post in the Federal Register requested public comment on the changes.

In December 2023, NCD, the independent federal agency responsible for making recommendations to the President, Congress and federal agencies on disability policy, sent a letter to Director Santos concerning substantive and procedural concerns about the proposal.

At issue was the potential for millions of people with disabilities that are less severe or whose disabilities are mitigated by using assistive technologies or medications to not be counted in U.S. census data.

In total, more than 12,000 comments were sent from government, nonprofit and advocacy representatives and disabled Americans highlighting concerns with the change.

Due to the overwhelming response, the Census Bureau cancelled the update and representatives joined NCD’s Feb. 8 Council meeting to explain the decision to cancel the change. The presentation is available on NCD’s YouTube channel.

In July the Census Bureau announced plans for the Sept. 30 meeting.

The convening had panels focused on defining disability and disability identity; an update on the disability data interagency working group; a path toward meaningful engagement with the disability community; reimagining disability data, featuring disability researcher perspectives on gaps, uses, and promising practices.

Following the panels and a comment opportunity, NCD Chair Claudia Gordon and Director Santos provided closing remarks on the event.

“Today is a testament to the power of collective action,” said Chair Gordon. “By working together in partnership and collaboration, we will and can ensure that the Census Bureau collects data that accurately represents our community, our beautiful community, our sizable community, our diverse community, and the data will support our needs.”

The meeting was recorded and can be watched in full on the Census Bureau’s YouTube channel.

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