The US Census Bureau has proposed changes to the way it estimates how many people with disabilities live in the country for its annual American Community Survey. smartboy10/Getty Images Hide caption
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The U.S. Census Bureau has proposed changes to the way it estimates how many people with disabilities live in the country for its annual American Community Survey.
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A proposal to change how the Census Bureau produces its key estimates of the number of people with disabilities in the United States has sparked controversy among many disability advocacy groups.
Some worry that changes to the disability question and the way responses are reported in the Federal Housing Administration’s annual American Community Survey could distort official government statistics, making it harder to ensure that people with disabilities have access to housing and health care, enforce legal protections against discrimination in schools and the workplace, and prepare communities for disasters and emergencies, advocates worry.
The proposal also rekindles long-standing questions about how accurately FBI data reflects the true picture of people with disabilities in the United States, especially as more people suffer from the long-term effects of COVID-19.
The agency said the recommended changes were part of a long-standing effort to improve the quality of disability data and standardize statistics to make them comparable with figures in other countries.
But the agency has received pushback over proposals to change questions from yes-or-noise questions about whether someone has “serious difficulty” with, for example, hearing, seeing, concentrating, walking or other functional abilities to questions that assess the level of difficulty.
A committee of federal agency representatives recommended that the new estimates for people with disabilities be based only on survey participants who responded with “great difficulty” or “not at all” — excluding those who responded with “some difficulty.”
The recommendations could reduce the estimated percentage of the U.S. population with some kind of disability by about 40%, or from 13.9% to 8.1% nationwide, according to a 2022 study by the agency.
“Millions of disabled people will no longer be counted. This is just the latest in a historic struggle to be seen as a community that matters,” said Alice Wong, a disability writer and activist who lives in San Francisco and has muscular dystrophy.
Tuesday was the last day to accept comments on the feedback, but the agency told NPR there will be another opportunity to comment on the proposals in the spring of 2024. For the changes to take effect after 2025, they need final approval from the White House Office of Management and Budget by June 1, 2024.
Why is this proposal so controversial?
Many of those in support of the proposed changes emphasize the value of the detailed data that can be gained by moving away from yes/no questions.
“Forcing a dichotomy hides a lot of nuanced information that different stakeholders can use to look at outcomes for people experiencing different levels of functioning,” Julie Weeks, a National Center for Health Statistics official who specializes in disability, said at a public meeting of the agency’s external advisory committee in November.
This approach to measuring disability based on activity difficulty was developed by the Washington Group on Disability Statistics, a group of international experts brought together by the United Nations Statistical Commission.
“I think it will help advocacy by showing that the more functional difficulties, the more barriers you face, the worse your outcomes are. And I think that will help inform policymaking,” says Daniel Montt, CEO and co-founder of the Inclusive Policy Center, who chaired the Washington Group’s analytical working group.
Montt added that following international standards would allow the U.S. to “compare itself with other countries” and better understand “whether we’re doing a good job supporting people with disabilities.”
Still, Montt acknowledges that the proposed changes have limitations: While they include new questions about communication difficulties, the revised questions do not adequately address the experiences of people with mental disorders or chronic health problems, for example.
But Montt points out that these proposed changes to the questions could lead to higher, not lower, disability rates: The agency’s research suggests that the U.S. disability rate could more than double if those who answered “somewhat difficult” were included alongside those who answered “a lot of difficulty” or “not at all difficult.”
But the agency’s current proposal is to use a more narrow definition of disability as the “primary” measure, counting only “great difficulty” or “not able to do anything at all.” Agency researchers, who plan to explore the possibility of releasing data based on the broader definition in 2024, said in their report that their focus is consistent with viewing disability as something that “arises only when an individual’s impairments cause them to encounter barriers to participation in society.”
But members of the agency’s national advisory council, including Marlene Salo, executive director of the National Disability Rights Network, have urged the agency not to adopt these proposed changes.
“I’m a woman with a disability, and I have multiple disabilities, but the one that immediately comes to mind is a degenerative spinal cord disorder, so while some days are difficult, overall it doesn’t prevent me from functioning normally,” Salo said at a committee meeting last month, questioning whether the department’s proposed definition of disability would include her.
“It’s not inclusive and it’s going to miss out on a lot of people in my community,” Salo warned.
And that can have a direct impact on people’s daily lives, said Marissa Ditkowski, an attorney who works on economic justice for people with disabilities at the National Partnership for Women and Families.
Ditkowski, who has multiple disabilities, said she relies on disability data from the American Community Survey to advocate for health care resources for people with disabilities.
“People with disabilities are already underrepresented, but underrepresenting them even more would be absolutely detrimental to our policies, how we allocate funding, and how we enforce civil rights,” Ditkowski added.
Why some activists are calling for a national task force on disability data
For Bonnielynn Swenar, who is blind and director of the Johns Hopkins University Center for Disability Health Research, the agency’s proposed changes to the questions are out of touch with how many people with disabilities view their own disabilities.
“Disability is now viewed as a social construct – a group of people – and the questions do not fit that framing of disability,” said Swenor, who led a group of researchers specializing in disability data in a letter to the commissioner in October.
Swenah is calling on the FBI to shelve its current proposal and help form a national task force to improve how the federal government compiles disability data. He says this would be an opportunity to emphasize the perspective of Americans with disabilities, which critics of the FBI proposal say has been missing from much of the discussion so far.
The core committee that put together these proposals did not add representatives from the Administration for Community Living and the Centers for Medicare and Medicaid Services — agencies that include the National Institute on Disability, Independent Living and Rehabilitation, the federal government’s main disability research institute — until this year, the department confirmed to NPR in an emailed statement.
Montt, a former chair of the Washington Group’s analytical working group, added that U.S. disability groups had not been significantly involved in developing the proposed questions.
“Were people with disabilities excluded from the process? Absolutely not,” Monto said. “Were people from the U.S. disability advocacy community not involved in this process until the very end? If so, I think that’s probably a fair statement.”
The department said that even if it doesn’t move forward with its current proposal for the 2025 American Community Survey, it still has a chance to make these changes in time for 2026. But any new proposals would have to be tested, and the survey isn’t scheduled to resume until 2027.
Working out the complex issues of coming up with alternative approaches may require additional time, said Lydia XZ Brown, public policy director at the National Institute on People with Multiple Disabilities.
“The problem with focusing solely on function is that a lot of people end up excluding themselves for a variety of reasons, including internalized ableism,” Brown says. “Whereas, if you simply ask, ‘Do you have a disability or not?’ you end up excluding a lot of people because they don’t necessarily know that the word ‘disability’ can be a broad category.”
A fundamental question, according to Swenor of the Johns Hopkins University Center for Disability and Health Research, is who has the power to decide who is and isn’t disabled.
“I think we need to really think and talk about the inequalities and inequities that are embedded in this process,” Swenor said.
Editor: Benjamin Swayze