Richard Besser, MD is president and CEO of the Robert Wood Johnson Foundation (RWJF). On December 14, 2023, he made the following statement. "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."
Cheers and Happy New Year!
Donna
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