Capitol Correspondence - 02.13.24

Census Bureau Reverses Course on Controversial Disability Survey Changes Following Public Outcry

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The U.S. Census Bureau has abandoned a contentious proposal that could have substantially reduced the estimated rate of disability in the United States by approximately 40%, as revealed by Census Bureau Director Robert Santos in a blog post last week.

The reversal comes just over two weeks after the bureau received over 12,000 public comments expressing concerns about the proposed changes to the annual American Community Survey (ACS), particularly regarding modifications to disability-related questions.

“Based on that feedback, we plan to retain the current ACS disability questions for collection year 2025,” stated Director Santos in the blog post. He further emphasized the Census Bureau’s commitment to collaborating with the public to comprehend data needs related to disability and evaluate potential revisions across the federal statistical system.

The current ACS disability questions employ a straightforward yes-or-no format, inquiring participants about their “serious difficulty” with various functional abilities such as hearing, seeing, concentrating, and walking.

The proposed changes would have required participants to rate their level of difficulty with specific activities. The Bureau intended to base its main disability estimates only on responses indicating “a lot of difficulty” or “cannot do at all,” excluding those reporting “some difficulty.” This adjustment could have reduced the estimated share of the U.S. population with any disability by approximately 40%, from 13.9% to 8.1%, according to the Bureau’s testing.

This approach faced substantial opposition from disability advocates who argued that measuring disability based on levels of difficulty is outdated and does not align with how many disabled individuals perceive their disabilities. Concerns were also raised about the potential impact on advocating for additional resources for disabled people if the disability data were to change.

In response to the outcry, Santos announced the Bureau’s intention to convene a meeting this spring with representatives from the disability community, advocates, and researchers to discuss “data needs.” He emphasized the Bureau’s commitment to continuous improvement.

Former Representative Tony Coelho (CA-15), a disability advocate and former House Majority Whip, hailed the decision as a triumph for the disability community. He stated, “This is a great victory for the disability community and a lesson for our community that it matters very much who is in a position to hear our concerns and act on our recommendations.”