We reported to you earlier, the U.S. Census Bureau met with disability community stakeholders September 30 in the D.C. metro area to better understand challenges in data availability and access for their community. The meeting brought together federal agency staff, disability stakeholders and community representatives, data users, and disability advocates. The presentations and recording of the meeting may be accessed here. The meeting included presentations by various government agencies, disability experts including many with lived experience, and a comment period.  

The discussion was prompted by concern last fall over a proposal to change the way disability questions are asked and which questions are used on the American Community Survey, which would have reduced the share of people considered to be disabled from 13.9 % of adults to only 8.1%. At the end of the meeting, Director Santos made it clear that the Bureau does not plan to propose any changes to the disability questions for at least 2 years (that is, it won’t be implemented in 2025 or 2026). He also noted that the Bureau has neither decided to move ahead with nor reject last year’s proposal, but any decision will be made after discussions with the disability community. He did not identify any planned next steps. 

The discussion, however, ranged far beyond discussion of last year’s proposal to explore why even existing questions and federal surveys omit many kinds of disabilities, how data is even more inaccurate for children than adults, and how the Bureau’s data collection process makes it difficult or impossible to include people with particular kinds of disabilities.  

ACS data provides the largest sample and therefore the best data for smaller geographies, racial and ethnic groups, or other subgroups. It is used for a wide range of purposes, including measuring needs of the disabled for services, allocation of federal funds, and protecting their civil rights in employment. Advocates described some of the hardships that arose when data was lacking, for example, in understanding the full impact of the COVID-19 pandemic and including COVID long haulers in data collection. 

Disability advocates are considering the best way to develop a set of ACS questions that more accurately capture the full range and prevalence of disability in our country and continue to collaborate with the Bureau and other federal agencies on next steps.