The Census Bureau has proposed making sweeping changes to questions about disabilities in its annual American Community Survey that advocates say could reduce the number of people counted as disabled by 40%, including millions of women and girls. Advocates argue that the changes to available data could affect federal funding and agency decisions about accessible housing, public transportation, and civil rights enforcement.
Katherine Nielsen, executive director of the Nevada Governor’s Council on Developmental Disabilities, said having the right data is critical because it not only helps identify flaws in the system, but also impacts federal funding levels.
“Many service providers are not being compensated 100% for the services they provide,” Nielsen said. “When you factor in this data reduction, you’re saying even fewer people are eligible for assistance. Fewer people are eligible, and the federal government will have less of a need to support these programs. The snowball effect of such a major change will be greater than most people expect at this point.”
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Some opponents of the change say the ACS question on disability needs to be revised because the current survey undercounts people with disabilities, but they worry the new approach could make things even worse.
Instead of the current “yes” or “no” format for six disability questions, the survey will ask respondents for broad answers about how difficult it is for them to perform certain functions. Advocates say the Census Bureau is recommending that only those who answer “very difficult” or “not at all” be considered “disabled” in federal terms.
“Part of the problem with what they’ve proposed is that it asks this scale and excludes anyone who says they have some difficulty with these functions. Even if you say you have some difficulty with all of these functions, you still won’t be included as disabled,” said Kate Gallagher Robbins, a senior fellow at the National Partnership for Women and Families. “What does ‘somewhat’ mean? Sometimes, or always? For my dad, who has had a stroke and walks with a cane and brace, is the difficulty with his mobility aid or without it?”
The Census Bureau said the revised questions “reflect advances in the measurement of disability and capture information on functioning in a manner that is conceptually consistent with the World Health Organization’s International Classification of Functioning, Disability and Health framework.” According to a public comment notice, the changes “reflect a continuum of functional ability” and include new questions covering psychosocial and cognitive disabilities and language disorders.
Comment time
When federal agencies propose changes to rules or routine processes, there is typically a public comment period. The Census Bureau goes through a lengthy process of testing questions and then soliciting public comment from stakeholders. The deadline for comments on the disability question and other changes to the American Community Survey, including the electric vehicle question and changes to the household directory question, was December 19. Many organizations focused on civil rights issues, including disability advocacy groups, have spoken out.
The Disability Coalition, a coalition of 100 member organisations, commented that the new approach was likely to miss identifying many people with chronic illnesses, mental health conditions and mental disabilities.
The National Partnership for Women and Families, a group of more than 70 organizations including many state agencies such as the Alabama Disability Assistance Program, the Iowa Disability Rights Coalition and the Nevada Governor’s Council on Developmental Disabilities, also issued a statement saying there was insufficient consultation with the disability community and the changes are too restrictive and could affect disaster response, emergency allocations for the Low Income Energy Assistance Program (LIEAP), Medicaid enrollment efforts and funding for the State Council on Developmental Disabilities.
Who will be left behind?
The National Partnership for Women and Families released an analysis on Dec. 5, estimating that the new question would exclude 9.6 million women and girls with disabilities. The group noted that women are more likely to have disabilities related to autoimmune diseases, chronic pain and gastrointestinal disorders.
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Robbins said he’s concerned about how this will affect people who apply for utility payment assistance or rely on Medicaid.
“People are [LIEAP] “If there’s not enough funding, what happens? Are we going to run out of money? Are we going to have to reapply?” she said.
States are also in the process of reversing pandemic-related Medicaid policies that allowed people to stay on Medicaid without going through the renewal process. People who lose Medicaid eligibility or fail to complete the renewal process will be disenrolled. Robbins said the data, which excludes many people with disabilities, could affect re-enrollment efforts.
“People are losing Medicaid and we’re in a situation where we don’t know how to figure out who needs Medicaid. [Children’s Health Insurance Program] “We will focus our efforts on making sure people don’t lose their health insurance,” she said.
Eric Buehlmann, deputy executive director of public policy for the National Disability Rights Network, has disabilities that include being unable to see on the left side of his face and having attention problems, according to the network’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 paratransit programs.
“I can’t drive, so I take public transport everywhere. [current] If I were a current person with a disability, I would answer “yes” to the question. [new questions] “Even so, I’m not sure I would find myself unable to answer any of the six questions listed,” he said.
Buehlmann said this could hurt poorer areas, which are likely to have higher rates of people with disabilities than other areas. The relationship between poverty and disability has been well documented by the Census Bureau and others. According to the Census Bureau’s Supplemental Poverty Indicator, 21.6% of people with disabilities were considered poor in 2019, compared with just over 10% of people without disabilities. The 2021 American Community Survey also found that the South had the highest rates of disability. 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.
“The link between poverty and disability does exist, but suddenly (with the new research) it doesn’t seem that way. And these are areas that may not have as many resources in the country. … Areas that are already under-resourced may have a bigger negative impact,” Buehlmann said.
The timing of the change is particularly bad.
The change in survey questions could also affect civil rights enforcement, said Marissa Ditkowski, disability economic justice counsel for the National Partnership for Women and Families. Disproportionate impact claims, which focus on the impact of policies on protected populations, including people with disabilities, could be affected by the change in data, she said.
“They’re literally using math to make these disparate impact claims,” she said. “They can’t do that. [Equal Employment Opportunity Commission], [the U.S. Department of Health and Human Services]”For all the agencies that enforce civil rights laws, I don’t think that’s going to make their lives any easier.”
Opponents of these changes add that the timing of this new approach is particularly harmful at a time when many Americans are experiencing disabilities as a result of the COVID-19 pandemic. Symptoms of long COVID can include shortness of breath, fatigue, and difficulty thinking or concentrating. In 2021, the Biden administration released guidelines for how long COVID will be disabling under the Americans with Disabilities Act.
Ditkowski, who has had long-term COVID-19 himself, said narrowing the definition of disability at this point seems paradoxical.
“With the COVID-19 pandemic, we’ve experienced one of the largest mass disability events in a long time,” she said, “… but these questions don’t necessarily answer the many issues that long COVID patients, chronic disease patients, chronic pain patients experience.”
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