Statement From Richard Besser, MD, on Census Bureau Engagement With Disability Community

The U.S. Census Bureau (Census Bureau) is proposing revisions to questions in the American Community Survey (ACS) that measure disability without sufficient engagement with the disability community. The Robert Wood Johnson Foundation (RWJF) supports the calls from disability advocates, organizations, and researchers asking for the Census Bureau to pause 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.

The Census Bureau should apply the principle “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 that the Census Bureau’s proposed changes would not resolve. People with disabilities in the U.S. are already substantially undercounted in part because people with certain types of disabilities, like psychiatric conditions and chronic disease, get missed more than others.

The Census Bureau’s proposed changes would make the undercounting problem much worse, reducing 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 tracks 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.

About the Robert Wood Johnson Foundation

The Robert Wood Johnson Foundation 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.