News Release

Changes to Census Bureau Data Collection on Disability

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The Census Bureau recently announced potential changes to the American Community Survey that could result in the undercounting of the number of disabled Americans by 20 million people starting in 2025. Researchers Bonnielin Swenor and Scott Landes argue that these changes to disability data collection will “artificially reduce national estimates of disability almost by half.” These researchers and other advocates have already called on the Census Bureau to reconsider.  

BONNIELIN SWENOR; bswenor@jhmi.edu, @BonnieSwenorPhD
    Swenor is the director of the Johns Hopkins Disability Health Research Center. 

Swenor told the Institute for Public Accuracy: The National Advisory Committee, a group that provides expertise to address Census Bureau needs, including communication with minority communities, held a meeting on the proposed changes. “There was an opportunity at the meeting to submit public comment, and of the large number [of comments] that were posted, the majority were asking for the change not to proceed. There seemed to be a sense of shock that this was happening. It’s concerning that the Committee had not been aware this was going on. There is [still] a federal register request for comment that is open through the 19th of this month.”

These changes are illuminating “a bigger issue, which is a deeper conversation in how there is an important shift going on in the disability community and [in] societal views of disability. We are at a pivotal moment. There is a call for data to reflect society, and an understanding that there is a bidirectional relationship between society and data. The data we collect has an impact on societal views, and societal views need to be reflected in data. 

“Part of this shift is the perception [that is] changing in the disability community ––that disability is not [just] a thing to treat or cure. It’s a shift toward a demographic group. That [shift] hasn’t been fully contended with in science. If you look at how disability is collected in surveys, it is [still] a health component, not a demographic one.

“We need to do better. We need to rethink what we’re doing altogether so that the data is a good reflection of how disability is being conceived of by disabled people and so that it is representative of the current legal landscape.

“This is the Census, but this is an issue for every federal agency in the government.”