Will the Census Bureau Change Disability Questions?

The United States Census Bureau admits it has received over 12,000 public comments through mid-December, sparking controversy shortly after it proposed major changes to the way it counts the number of Americans with disabilities.

Americans are questioning the potential revisions to the disability questions on the bureau’s annual American Community Survey, as well as how the bureau reports out people’s responses. According to testing the bureau, these results could skew the government’s official statistics and disability rate by 40% of the current disability population.

The modifications would include six disability questions that would be reordered, reworded and a new question would be added to ask about psychosocial and cognitive disability as well as problems with speech.

Survey Question Format Changes

The biggest change that could be made is that people would be asked to rate the level of difficulty they have with various functions, rather than the current response of “yes” or “no.”

Currently, the existing yes/no questions ask respondents if they have difficulty or “serious difficulty” seeing, even with glasses, or are blind; hearing, or are deaf; concentrating, remembering or making decisions because of a physical, mental or emotional condition; walking or climbing stairs; dressing or bathing; or performing everyday tasks because of a physical, mental or emotional condition. If the answer is ”yes,” they are simply counted as having a disability.

However, the revised model proposed by the Census would require that a person respond to the same questions with “no difficulty,” “some difficulty,” “a lot of difficulty” or “cannot do at all.” So now, to be properly accounted for as being identified with a disability, a person must answer “cannot do at all” or “a lot of difficulty” for any task or function.

Those with disabilities find these new four answers to be concerning as they feel pressured to rate their disability more specifically, to which they may frantically not answer rightly to be defined as having a disability.

“Millions of disabled people will no longer count, which is just the latest in the historic struggle to be seen as a significant community that matters,” says Alice Wong, a disabled author and activist based in San Francisco with muscular dystrophy.

Marlene Sallo said her degenerative spine condition presents difficulties on some days, but overall she is able to function on a daily basis, so she is one who worries that she might not be considered as having a disability with the revised questions, reports AP News. “Right now, it’s not inclusive and it will miss many individuals within my community,” Sallo, executive director of the National Disability Rights Network, said last month at a meeting of a Census Bureau advisory committee, of which she is a member.

Experts agree that current questions don’t adequately account for people with mental health problems, developmental disabilities, or chronic health conditions, like those faced by many people living with the emerging effects of long COVID. Though, they admit the proposed change isn’t the answer either and that other changes must be made to the survey.

“Disability is an evolving concept, and there is a new kind of disability we didn’t have five years ago, Long COVID, and we need to be able to account for that and other changes,” said Susan Popkin, co-director of the Disability Equity Policy Initiative at the Urban Institute, who has a chronic autoimmune condition.

Is a National Task Force on Disability Data Needed?

Advocates worry the consequences of these new answers would make it harder to ensure that disabled people have access to housing and health care, enforce legal protections against discrimination in schools and at work, and prepare communities for disasters and emergencies.

“In short, major changes to the ACS data collection could have dramatic effects on people with disabilities’ access to critical government supports,” according to comments signed by dozens of advocacy groups that were submitted by the Consortium for Constituents with Disabilities.

Bonnielin Swenor, the director of the Johns Hopkins University’s Disability Health Research Center, who has a visual disability, says the bureau’s proposed question changes are out of date with how many disabled people view their disabilities.

Swenor is requesting the bureau put aside its current proposal and instead help form a national task force on improving how the federal government produces disability data. This opportunity, Swenor says, would center the perspectives of disabled people in the U.S., which critics of the bureau’s proposals say were missing in many of the discussions leading up to this point.

This Spring, the disabled community will get another chance to weigh in on these proposals. Final approval is needed from the White House’s Office of Management and Budget by June 1, 2024, for any changes to appear starting in 2025.

However, it seems this could take much longer. If the bureau does not move forward with its current proposals for the 2025 version of the American Community Survey, there is still an opportunity to make these changes in time for 2026. Any new proposals must to go through testing, which is not scheduled to start again for the survey until 2027.

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