The U.S. Census Bureau wants to change how it asks people about disabilities, and some advocates are complaining that they were not consulted enough on what amounts to a major overhaul in how disabilities would be defined by the federal government.
Disability advocates say the change would artificially reduce their numbers by almost half. At stake are not only whether people with disabilities get vital resources for housing, schools or program benefits but whether people with disabilities are counted accurately in the first place, experts said.
Some also question the timing of the change, which comes just as more people are living with new, long-term conditions from the COVID-19 pandemic.
Census Bureau officials say the proposed change on its most comprehensive survey of American life will align the U.S. with international standards, allowing comparisons among countries. They also say it will better capture how disabilities occur in the real world, since they rarely fit neatly into stark yes-or-no boxes that don’t account for variations or nuance.
“The bureau has spent time, money and energy trying to improve counts of racial and ethnic minorities who have been historically undercounted, but the statistical agency seems willing to adapt questions that will shortchange the numbers of people with disabilities,” said Scott Landes, an associate professor of sociology at Syracuse University.
“This, in my mind, is illogical,” Landes, who is visually impaired, said in an interview. “There is a piece of me that thinks, ‘How dare you — to think that we don’t count.’ I get offended.”
If given final approval, the changes to the American Community Survey questions would be implemented in 2025. The ACS is the most comprehensive survey of American life, covering commuting times, internet access, family life, income, education levels, disabilities and military service, among other topics. The statistical agency was asked to make the change by the National Center for Health Statistics 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 “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 counted as having a disability.
Under the proposed change, respondents would be allowed to answer most of the same questions with four choices: “no difficulty,” “some difficulty,” “a lot of difficulty” and “cannot do at all.” There are tweaks to the language of the questions, and the proposal adds a query on whether respondents have trouble communicating.
But the most significant change involves the threshold beyond which people are determined to have a disability. The international standards being considered by the Census Bureau typically define a person as having a disability if they answer “cannot do at all” or “a lot of difficulty” for any task or function.
During testing last year by the Census Bureau, the percentage of respondents who were defined as having a disability went from 13.9% using the current questions to 8.1% under the international standards. When the definition was expanded to also include “some difficulty,” it grew to 31.7%.
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 worries that she might not be considered as having a disability with the revised questions.
“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.
Officials at the Census Bureau and the health statistics agency argue that the change will give officials better information and details about disabilities that can inform how services or resources are provided.
“Forcing a dichotomy masks nuance,” Julie Weeks, an official at the National Center for Health Statistics, said during a presentation last month.
The terminology surrounding disabilities has evolved in recent years, moving away from labels that imply inferiority and toward more sensitive language that outlines the specific conditions or circumstances in which individuals or groups live. The Associated Press defers whenever possible to the wishes of people or groups in how they choose to be described but uses neutral language that withholds judgment about a person’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 adopt the change until it meets further with disability advocates and researchers.
While the proposal may be better for scientific research, the questions, if approved, will be adapted with the needs of agencies and not people with disabilities in mind, Andrew Houtenville, research director at the Institute on Disability at the University of New Hampshire, told members of the National Advisory Committee at last month’s meeting.
“This has taken a lot of people by surprise,” Houtenville said.
Some experts believe the 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 long COVID. But they say the proposed change isn’t the answer.
“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.
The proposed change is grating to some advocates since it is occurring at a time when disability has grown to be an identity and a social movement, rather than just a function-based definition of someone’s limitations. For instance, a person with limited hearing may be able to function fully with the help of hearing aids but can still identify 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 is 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 of view in disability pride and claiming disability identity as part of who we are … not as a deficit,” Swenor said.