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Measuring Disability in the Census Bureau: Policy Implications and Opportunities

In October, the US Census Bureau announced a proposal to change the way it measures disability that would have reduced the official disabled population estimate nearly in half. But after significant feedback from researchers and the disability community, the bureau announced in February 2024 that it would put that proposal on hold to deliberate further. Now, the bureau has the opportunity to meaningfully engage the disability community in exploring how to more accurately and inclusively measure disability in the American Community Survey.

Both the current measure and the Census Bureau’s initial proposal rely on functional definitions of disability (e.g., the ability to see, hear, or walk) and exclude millions of Americans, including those with chronic illnesses, psychiatric disabilities, or conditions that affect them intermittently. Accurately estimating the number of disabled Americans is critical for informing public funding decisions, planning resource and program provision, enforcing regulations, and understanding the lived experiences of different groups, as Urban explores in new research.

The Urban Institute’s Disability Equity Policy Initiative and the Disability & Philanthropy Forum invite you to join a discussion on the need for an accurate count of disabled people in the US and the policy implications of proposed changes. 


  • Richard E. Besser, President and CEO, Robert Wood Johnson Foundation; Cochair, Presidents’ Council of the Disability & Philanthropy Forum

Panel 1 - Implications for Policymaking and Research:

  • Scott Landes, Associate Professor of Sociology, Syracuse University
  • Susan J. Popkin, Institute Fellow and Codirector, Disability Equity Policy Initiative, Urban Institute
  • Kimberlyn Leary, Executive Vice President, Urban Institute (moderator)

Panel 2 - Importance to Disabled Communities:

  • Meeta Anand, Senior Director, Census and Data Equity, Leadership Conference on Civil and Human Rights
  • Dom Kelly, Cofounder, President, and CEO, New Disabled South
  • Marlene Sallo, Executive Director, National Disability Rights Network
  • Celina Barrios-Millner, Co–Vice President, Office of Race and Equity Research, Urban Institute (moderator)


Disability & Philanthropy Forum Logo


The title and description of this event have been edited to reflect the US Census Bureau's recent announcement to pause the proposal to change the way it measures disability.

Support for this event was provided by seed funding from the Ford Foundation. For more on Urban’s funding policies, go to

We strive to host inclusive, accessible events that enable all individuals to engage fully. We will provide American Sign Language (ASL), Communication Access Realtime Transcription  (CART), and autotranscription services. Please email [email protected] if you require any accommodations or have any questions about this event.

Urban Institute Speakers
  • Co-Vice President
  • Executive Vice President
  • Institute Fellow
    Codirector, Disability Equity Policy Initiative