Census Rethinking How To Count Disability Population

After facing an uproar for trying to change the way it counts the number of Americans with disabilities, the U.S. Census Bureau will meet with advocates concerned about the potential for a severe undercount.

Officials with the Census Bureau said they will convene with disability stakeholders Sept. 30 to “better understand challenges in data availability and access for their community.”

The meeting comes after the Census Bureau proposed major modifications last year to its disability questions as part of an update to the American Community Survey. Officials backed off the plan after receiving over 12,000 comments, many of which were critical.

The meeting is being hosted by the Census Bureau along with the Office of Management and Budget, the National Center for Health Statistics, the National Council on Disability, The Leadership Conference Education Fund and the Consortium for Constituents with Disabilities’ Health Task Force, Census officials said. It will include federal representatives, data users, disability advocates and other members of the community.

“The Census Bureau appreciates the public’s interest in the ACS program and feedback on the most recent proposed changes,” the Census Bureau said. “The proceedings will help inform the collection of disability information for future ACS iterations as well as for the broader federal community.”

With the proposal issued last fall, officials sought to reorder and reword the series of six disability questions while adding a new question about psychosocial and cognitive disability and problems with speech. Under the plan, people would be asked to rate the level of difficulty they have with various functions rather than simply responding with “yes” or “no.” Advocates said that in order to be counted as having a disability, a person would need to respond to at least one question with “a lot of difficulty” or “cannot do at all.”

Disability advocates had warned that the changes, which they said caught them by surprise, could lead to a 40% drop in the count for this population. That would have sweeping ramifications, they said, since Census Bureau data is used to inform decisions on federal funding allocations and many government programs.

Now, advocates say it’s important that the Census Bureau regularly engage with the disability community.

“It’s critical that our community and our experts inform the way the bureau approaches these revisions, and that they take seriously our concerns about how changes could impact the disability community,” said Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. “There are important policy implications to how the government approaches counting and identifying people with disabilities, and our motto ‘nothing about us without us’ definitely applies here.”

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