The Census Bureau has proposed a major change to disability questions on its annual American Community Survey that advocates say will reduce the number of people who are counted as disabled by 40%.

The change in available data could affect federal funding allocations and the decisions government agencies make about accessible housing, public transit, and civil rights enforcement, they argue.

Catherine Nielsen, executive director of the Nevada Governor’s Council on Developmental Disabilities, said having correct data is vital not only because it helps identify gaps in the system but because it affects federal funding levels.

“Many providers are not reimbursed at 100% for the services they provide,” Nielsen said. “When we take into consideration this cut to the data, we’re essentially saying we have even less people that will qualify for support. If we have less people that qualify, that in turn tells the Feds they have less of a need to support these programs. The snowball effect of such a significant change will be greater than most can even anticipate at this time.”

Although some opponents of the change have said that the ACS disability questions needed revising because the survey currently undercounts the number of disabled people, they say they are worried that the new approach is worse.

Instead of the current yes or no answers to the six disability questions on the survey, respondents will be asked to provide a range of responses on how difficult it is for them to perform certain functions. The Census Bureau is recommending that only people who answer “a lot of difficulty” or “cannot do at all” be considered “disabled” by Federal terms, advocates say.

“Part of the issue with what they proposed is they are asking this scale and then excluding every person who says they have some difficulty in terms of these functions. Even if you say you have some difficulty with all of these functions, you would not be included as disabled,” said Kate Gallagher Robbins, senior fellow at the National Partnership for Women & Families.

“What does ‘some’ look like?” she said. “Is that some of the time or some difficulty all of the time? For my own dad, who had a stroke and walks with a cane and a brace, is that difficulty for when he has those mobility aids or absent those mobility aids?”

The Census Bureau has stated that the revised questions will “capture information on functioning in a manner that reflects advances in the measurement of disability and is conceptually consistent with” the World Health Organization’s International Classification of Functioning, Disability, and Health framework. The changes “reflect the continuum of functional abilities” and include a new question that includes psychosocial and cognitive disability and problems with speech, according to the notice for public comment.

Time for comment

When a federal agency proposes rules or changes to a standing process, it typically has a public comment period. The Census Bureau goes through a very long process where it tests the questions. Then it asks for public comment from stakeholders. The deadline for comments on the disability questions as well as other changes to the American Community Survey, which include asking about electric vehicles and changing the household roster questions, is Dec. 19.

Many organizations focused on civil rights issues, including disability advocacy groups, are weighing in.

The Consortium for Constituents with Disabilities, which includes 100 groups, commented that the new approach will likely miss identifying many people with chronic conditions and mental or psychiatric conditions.

The National Partnership for Women & Families, joined by more than 70 groups, including many state entities such as the Alabama Disabilities Advocacy Program, Disability Rights Iowa, and Nevada Governor’s Council on Developmental Disabilities, also has commented.

They say that there was not enough consultation with the disabled community and that the changes are overly restrictive, which could affect disaster preparedness responses, emergency allocations for the Low Income Energy Assistance Program (LIEAP), enrollment efforts for Medicaid and funding for State Councils on Developmental Disabilities.

Who will be left out

The National Partnership for Women & Families released an analysis on Dec. 5 that estimated the new questions would leave out 9.6 million women and girls with disabilities. The organization notes that women are more likely to have disabilities related to autoimmune disorders, chronic pain, and gastrointestinal disorders.

Robbins said she’s concerned about the effects this will have on people who apply for help paying utility bills or who rely on Medicaid.

“When people go to apply for those [LIEAP] funds, what is going to happen? Are there not going to be enough funds left? Will they do another application?” she said.

States are also going through the process of unwinding a pandemic-related Medicaid policy, which allowed people to stay enrolled in Medicaid without going through a renewal process. People who are no longer eligible for Medicaid or couldn’t finish the renewal process are being disenrolled. Robbins said data excluding many people with disabilities could affect efforts to re-enroll people.

“People are losing their Medicaid and we’re in a situation where we don’t know how to figure out who needs Medicaid and [Children’s Health Insurance Program] and direct our efforts to make sure people don’t lose health insurance,” she said.

Eric Buehlman, deputy executive director for public policy at the National Disability Rights Network, has a disability that includes not having vision from the left side of his face and attention issues, according to the organization’s website. He said the new questions could affect him and other people with disabilities who use public transportation if the data doesn’t show a need for more paratransit programs.

“I’m not supposed to drive, so I use public transportation to go everywhere. But under these [current] questions, I would have checked yes, for a person with a disability as they currently are. But under the way these [new questions] are, I’m not sure I would consider myself to be incapable of doing any of the six questions listed,” he said.

Buehlman said this could hit areas of the country that are more impoverished, which likely have a higher level of people with disabilities, harder than others. The connection between poverty and disabilities have been well documented, including by the Census Bureau. Its Supplemental Poverty Measure shows that in 2019, 21.6% of disabled people were considered poor, compared with just over 10% of people without disabilities. And in 2021, the American Community Survey found that the South had the highest disability rate.

Of the five states with the highest poverty rates that year, four were in the South — Kentucky, Louisiana, Mississippi and West Virginia. The fifth was New Mexico.

“All of a sudden this connection between poverty and disability which does exist out there, doesn’t appear like it is (under the new survey). And these are areas of the country that may not have as many resources … It could have a higher negative impact in areas that are already underfunded,” Buehlman said.

Timing of changes particularly bad

The change in the survey questions could also have an impact on civil rights enforcement, said Marissa Ditkowsky, disability economic justice counsel at the National Partnership for Women & Families. Disparate impact claims, which focus on the effect a policy has on a protected class, including people with disabilities, could be affected by a change in data, she said.

“They are literally using math in these disparate impact claims to make these claims,” she said. “When you don’t have the ability to do that, I can’t imagine the [Equal Employment Opportunity Commission], [the U.S. Department of Health and Human Services], all of these agencies that enforce civil rights laws, I can’t imagine it will make their lives any easier.”

Opponents of these changes add that the timing of this new approach is particularly harmful when so many Americans are experiencing disabilities as a result of the COVID-19 pandemic. Long COVID symptoms can include shortness of breath, fatigue, and difficulty thinking and concentrating. In 2021, the Biden administration released guidance on how Long COVID can be a disability under the Americans with Disabilities Act.

Ditkowsky, who herself has Long COVID, said it seems counterintuitive to narrow the definitions for people with disabilities at this time.

“We’ve had one of the biggest mass disabling events in a long time with COVID-19 pandemic,” she said. ” … But the questions don’t necessarily get at a lot of the issues that Long COVID patients or patients with chronic conditions and people with chronic pain experience.”

To comment on the changes to the American Community Survey go to regulations.gov and click on comment. Deadline to comment is Dec. 19, 2023.