Census Bureau wants to change how it asks about disabilities. Some advocates don't like it

The U.S. Census Bureau wants to change the way it asks people about disabilities, and some advocates complain they haven't been consulted enough about what amounts to a major overhaul of how disabilities would be defined by the federal government.

Disability advocates say the change would artificially reduce their numbers by almost half. At issue is not just whether people with disabilities get vital resources for housing, schools or program benefits, but whether people with disabilities are accurately counted at all, experts say.

Some also question the timing of the change, which comes just as more people are living with new, long-term conditions due to the COVID-19 pandemic.

Census Bureau officials say the proposed change to the most comprehensive record of American life will align the U.S. with international standards, allowing comparisons across countries. They also say it will better reflect how disabilities exist in the real world, as they rarely fit neatly into tight yes-or-no boxes that don't take into account variations or nuances.

“The agency has spent time, money and energy improving the numbers of racial and ethnic minorities that have historically been undercounted, but the statistical agency appears willing to adjust questions that will undercount the number of people with disabilities,” she said. Scott Landes, a spokesman for the agency. associate professor of sociology at Syracuse University.

“This is illogical in my opinion,” Landes, who is visually impaired, said in an interview. “There's a part of me that thinks, 'How dare you think we don't count.' I feel insulted.”

If final approval is given, the changes to the American Community Survey questions would be implemented in 2025. The ACS is the most comprehensive survey of American life, covering commute times, Internet access, family life, income, education levels, disabilities and military service, among other topics. The statistical agency was asked by the National Center for Health Statistics to make the change and is accepting public comment on the proposal through Dec. 19.

The existing questions ask respondents to answer “yes” or “no” if they have difficulty or “severe difficulty” seeing, even with glasses, or are blind; being hearing or deaf; concentrating, remembering, or making decisions due to a physical, mental, or emotional condition; walking or climbing stairs; dressing or bathing; or performing everyday tasks due to a physical, mental or emotional condition. If the answer is yes, they are counted as people with disabilities.

Under the proposed change, respondents would be able to answer most of the same questions with four choices: “no difficulty,” “some difficulty,” “a lot of difficulty” and “can't do it at all.” There are adjustments to the language of the questions and the proposal adds a question about whether respondents have difficulty communicating.

But the most important change concerns the threshold above which people are determined to have a disability. The international standards considered by the Census Bureau generally define a person as having a disability if he or she answers “not at all able” or “a lot of difficulty” in any task or function.

In testing last year by the Census Bureau, the percentage of respondents identified as having a disability went from 13.9% based on current questions to 8.1% under international standards. When the definition was expanded to include “some problems,” it grew to 31.7%.

Marlene Sallo said her degenerative spinal condition causes difficulties some days, but she is generally able to function on a daily basis, so she is concerned that the revised questions may not allow her to be hired that she has a disability.

“Right now it's not inclusive and it's going to miss a lot of people in my community,” Sallo, executive director of the National Disability Rights Network, said last month at a meeting of an advisory committee to the Census Bureau, of which she is a member.

Officials from the Census Bureau and the Health Statistics Agency say the change will give officials better information and details about disabilities, which can determine how services or resources are provided.

“Forcing a divide masks nuance,” Julie Weeks, an official at the National Center for Health Statistics, said during a presentation last month.

The terminology around disability has evolved in recent years, moving away from labels that imply inferiority and towards more sensitive language that outlines the specific conditions or circumstances in which individuals or groups live. Whenever possible, the Associated Press takes into account the wishes of people or groups in how they wish to be described, but uses neutral language that does not pass judgment on an individual's condition.

Disability advocates said the international standards were formulated without their input. Last month, the Census Bureau's National Advisory Committee recommended that the statistical agency not make the change until further consultation with disability advocates and researchers.

While the proposal may be better for scientific research, the questions, if approved, would be tailored to the needs of agencies and not to people with disabilities in mind, Andrew Houtenville, research director of the University of New Hampshire's Institute on Disability, told me . members of the National Advisory Committee at last month's meeting.

“This took a lot of people by surprise,” Houtenville said.

Some experts believe that current questions do not sufficiently take into account people with mental health, developmental disabilities or chronic health conditions, such as those faced by many people living with long-term COVID. But they say the proposed change is not the answer.

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

The proposed change is off-putting to some advocates because it comes at a time when disability has grown into an identity and a social movement, rather than just a job-based definition of a person's limitations. For example, a person with limited hearing may be able to function fully with the help of hearing aids, but may still be identified as having a disability.

“You can be proud of your disability and still not want the pain and symptoms of the conditions that lead to that disability. That's part of a shift in disability as a demographic group,” said Bonnielin Swenor, director of the Johns Hopkins Disability Health Research Center, who has low vision.

“There is a shift in perspective on disability pride and claiming disability identity as part of who we are… and not as a deficit,” Swenor said.

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