(Photo by Disabled and Here)
In February, the US Census Bureau announced it would pause proposed changes to how it measures the number of disabled people in the US. The decision came after the bureau received thousands of comments expressing concerns with its proposal to switch to a new set of survey questions on the American Community Survey (ACS), a critical source of demographic data in the US.
Research has shown the existing ACS questions underestimate the disabled population in the US. The proposed changes would exacerbate the issue, reducing the count by about 18 million people—or almost half of the census’s current estimate (PDF). This decrease could also affect disabled people’s access to critical supports, given that policymakers at all levels of government use ACS estimates to plan, fund, and evaluate programs in housing, transportation, and other essential areas.
At a recent Urban Institute event, researchers, advocates, and nonprofit leaders encouraged the Census Bureau to follow through on its recent commitment to engage with the disability community as it continues to explore possible changes to how it measures disability. Doing so would generate a more accurate, inclusive snapshot of the disabled population.
Census engagement with the disability community has fallen short
Though panelists commended the bureau for pausing proposing changes to the ACS questions, many said the agency hadn’t sufficiently consulted with the disability community while putting together its initial plan.
“This is a situation where it didn’t seem maybe necessary to have our community at the table,” said Dom Kelly, cofounder, president, and CEO of New Disabled South. The lack of engagement and the undercounting of disabled people in the US more broadly, said Kelly, “is a disability justice issue as much as it is a racial justice issue.” Across the US, communities of color, particularly Indigenous and Black people, experience higher rates of disability (PDF) because of unequal access to health care, higher poverty rates, and other forms of structural racism. The South—the region Kelly’s advocacy group serves—has the highest rate of disability in the US.
“The most marginalized people lose out the most,” said Kelly, when underestimates of the disabled population result in a lack of adequate funding for the critical programs disabled people rely on.
Other panelists explained that changes to the ACS disability questions should be grounded in data equity principles. “Communities need to be involved in what data is collected about them,” said Meeta Anand, senior director of census and data equity at the Leadership Conference on Civil and Human Rights. “Data should be used in service of communities,” said Anand, “and not just extracted from communities.”
More accurately measuring disability in the US
As the Census Bureau continues to seek more feedback on its proposal, panelists offered three steps the bureau can take to meaningfully engage with the disability community and work toward a more accurate, inclusive count of disabled people in the US.
Create opportunities for disabled people across the US, including researchers, advocacy organizations, and service providers, to engage in the Census Bureau’s decisionmaking process.
To ensure any ACS changes capture a more complete picture of people with disabilities, panelists said the bureau should proactively include people with a broad range of disabilities and from diverse backgrounds in its ongoing conversations.
“Purposefully, actively reach out to disability rights organizations, disability justice organizations, not just in the [District of Columbia, Maryland and Virginia]… but across the United States,” said Marlene Sallo, executive director of the National Disability Rights Network.
Opportunities for engagement should also be accessible and provide participants with the accommodations they need to participate fully.
Explore alternative survey questions that would more accurately count the disabled population.
Studies have shown that the current ACS disability questions—which use a functional definition of disability—exclude millions of Americans, including those with chronic illnesses, psychiatric disabilities, or conditions that affect them intermittently.
Having paused the proposed changes, the bureau now has an opportunity to explore ways to capture a more inclusive snapshot of disabled people in the US, panelists said. A critical part of that process, said Scott Landes, associate professor of sociology at Syracuse University, is asking the disability community, “What would you like these questions to include?... How should these questions be asked in order to count you and your individual experience?”
Create an interagency committee to explore how federal agencies, programs, and funding formulas will be affected if the Census Bureau changes the ACS disability questions.
Census Bureau estimates are used to allocate more than $2.8 trillion in federal funds to 353 programs that provide critical services such as transportation and housing. Though many of these federal programs use ACS disability data to distribute funds, it’s difficult to quantify how a change in disability measures might affect the distribution of funds.
“One of the big areas of real concern… is around emergency planning, preparedness, and response programs,” said Sue Popkin, codirector of Urban’s Disability Equity Policy Initiative. Federal, state, and local agencies all rely on ACS disability data to ensure people with disabilities get the assistance they need in the event of a disaster, she explained.
Studies have shown, however, that disabled people are disproportionately vulnerable during climate emergencies, as most emergency resources don’t adequately consider the needs of disabled people.
“As climate change continues to exacerbate environmental emergencies,” said Popkin, “preparedness will only continue to be more essential and getting those numbers right will be more important.”
The bureau and other federal agencies need “to help us understand exactly how these data are used for [federal] funding, how these data are used for enforcement, where they are used, [and] what are the variables that go into it,” Anand said. This information is critical to understanding how a change in disability measurements could affect how program funds are distributed.
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