Comments from Richard Besser, MD, Urging Census Bureau to Pause Proposed Changes to Disability Questions

The following comments were submitted by Richard Besser, MD, Robert Wood Johnson Foundation (RWJF) President and CEO, in response to a request for comments from the U.S. Census Bureau regarding proposed changes to the American Community Survey.

The Robert Wood Johnson Foundation (hereinafter “RWJF”) appreciates the opportunity to respond to the U.S. Census Bureau (Census Bureau) request for comment on the proposed revision of the American Community Survey (ACS) and the Puerto Rico Community Survey (Docket Number USBC-2023-0009).

RWJF is committed to improving health and health equity for all in the United States. In partnership with others, we are working to develop a Culture of Health rooted in equity that provides every individual with a fair and just opportunity to thrive, no matter who they are, where they live, or how much money they have.

Health is more than an absence of disease. It is a state of physical, mental, and emotional wellbeing. It reflects what takes place in our communities, where we live and work, where our children learn and play, and where we gather to worship. That is why RWJF focuses on identifying, illuminating, and addressing the barriers to health caused by structural racism and other forms of discrimination, including sexism, ableism, and prejudice based on sexual orientation.

We promote evidence to advance health equity. We cultivate leaders who work individually and collectively across sectors to address health equity. We promote policies, practices, and systems change to dismantle the structural barriers to wellbeing created by racism. And we work to amplify voices to shift national conversations and attitudes about health and health equity.

The following comments are informed by the perspectives of our grantees, who include academic researchers, policy experts, advocates, and organizers with deep expertise in disability inclusion and justice. Our comments are also informed by RWJF’s participation in the Disability & Philanthropy Forum and my role as co-chair of the Presidents’ Council.

Comments on the Proposed Revisions to Disability Survey Questions

The Census Bureau is proposing revisions to questions in the ACS that measure disability without sufficient engagement with the disability community. RWJF supports the calls from disability advocates, organizations, and researchers asking for the Census Bureau to pause the proposed revisions to the disability questions, meaningfully engage with the disability community through a more inclusive process, and issue a revised plan that is responsive to feedback provided as part of that process. 

We note that the National Advisory Committee to the Census Bureau recently recommended that the agency postpone the proposed changes to its disability survey questions and improve engagement with the disability community. Above all, RWJF implores the Census Bureau to apply the principle of “nothing about us, without us” regarding people with disabilities as it considers changes to the disability questions in the ACS. This phrase responds to a long history of policymaking constructed without the involvement of the disability community that has significant negative consequences to the health and wellbeing of people with disabilities.

The current questions used for disability in the ACS have known limitations. They substantially undercount people with disabilities in the U.S. People with certain types of disabilities, like psychiatric conditions and chronic disease, get missed more than others. These questions should be improved, but the Census Bureau’s proposed changes would not resolve many of the current limitations. 

In fact, the Census Bureau’s proposed changes would make the undercounting problem much worse, reducing the ACS disability prevalence in the U.S. by roughly 40 percent. It is unclear what analysis the agency has conducted of the implications of the proposed changes for programs administered by fellow federal agencies and offices, for example, the Social Security Administration, the Veterans Administration, and the Department of Labor’s Office of Disability Employment Policy. Further, it is unclear whether the proposal reflects expert feedback from relevant federal agencies, for example, the National Council on Disability and the U.S. Access Board.

RWJF encourages the Census Bureau to adopt an inclusive and fully representative definition of disability so that ACS data accurately track the full diversity of people’s lived experience with disability in the U.S. Given how the Census Bureau’s disability data is used to inform the allocation of government resources as well as the development of local, state, and federal policymaking, RWJF is concerned that the proposed changes could make it more difficult for people with disabilities to get the supports they need and deserve.   

RWJF recommends that the Census Bureau prioritize active and intentional engagement with a diverse group of people with disabilities, disability researchers, and disability advocacy organizations going forward. That includes individuals and organizations that can advise how to accurately describe not only the disability status but also the functional needs and other characteristics of people with disabilities of all types, including non-apparent disabilities. Finally, RWJF urges the Census Bureau to ensure that its outreach and engagement efforts are mindful of accessibility needs to facilitate meaningful participation by people with disabilities. This attention to process may take longer, but it will lead to better data and better outcomes for people with disabilities.

Conclusion

Thank you for the opportunity to comment on the Census Bureau’s proposed revision of the ACS. RWJF is hopeful that the Census Bureau will heed the calls of the disability community and the recommendations of the agency’s National Advisory Committee to pause the proposed changes to the ACS disability survey questions and consult with researchers and advocates in the disability community to ensure that the ACS more accurately reflects the realities of disability in the U.S.

About the Robert Wood Johnson Foundation

The Robert Wood Johnson Foundation (RWJF) is committed to improving health and health equity in the United States. In partnership with others, we are working to develop a Culture of Health rooted in equity that provides every individual with a fair and just opportunity to thrive, no matter who they are, where they live, or how much money they have.