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.

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.”

Read the full article about inclusive accurate estimate of people with disabilities by Dana Ferrante at Urban Institute.