Census Bureau analysts, policy experts, and disability rights advocates will convene next week to discuss whether or how Bureau officials should change the way disabled Americans are counted. 

At issue is a change in the methodology used in the way people with disabilities are tallied in the American Community Survey (ACS) – one that advocates fear could result in a severe undercount. Because ACS results help determine funding decisions and are used to manage many programs, such an outcome could result in vital services such as housing and health care being underfunded, weaker civil rights enforcement, and inadequate management of many government services such as preparations for disasters and emergencies.  

The controversy began last year, when the Census Bureau proposed a significant update to its American Community Survey. Officials proposed rewording a series of six disability-related questions. Under the plan, people would be asked to rate the level of difficulty they have achieving various functions rather than simply responding “yes” or “no.” The Census Bureau conducted a test of this alternative and proposed using the new questions in a way that their research showed would have reduced the number of people considered to be disabled by nearly half, from 13.9 % of adults to only 8.1%.  

Advocates protested, arguing that this would result in a massive undercount of people with disabilities, and also pointed out that even the current format of the questions undercount the disabled because some kinds of disability are not counted at all. Eventually, the proposal was put on hold, and it likely will stay that way through 2025. 

“Millions of disabled people will no longer count, which is just the latest in the historic struggle to be seen as a significant community that matters,” Alice Wong,  a disabled author and activist based in San Francisco with muscular dystrophy, told NPR. 

Marissa Ditkowsky is an attorney focused on disability economic justice at the National Partnership for Women and Families. Ditkowsky, who is multiply disabled, told NPR she relies on the American Community Survey’s disability data to advocate for health care resources for people with disabilities. 

“Disabled folks are already undercounted,” she says. “But to further undercount them is just absolutely harmful to our policies, the way we allocate funding and civil rights enforcement.” 

Back in December 2023, CHN submitted comments in opposition to the new guidelines to the Department of Commerce as part of its rule-making process.  

Using data supplied by the Center for Economic and Policy Research and the Patient-Led Research Collaborative, CHN said the current form of the disability questions already result in an undercount of 20 million people with disabilities; the proposed questions would worsen the undercount by another 15 million. 

“Undercounting disability like this would impact services and resources for the disability community,” CHN wrote. “Disability statistics based on the ACS are used in transit service and accessible housing needs planning, disaster preparedness, determination of funding for various disability-related services, and ADA and other antidiscrimination enforcement. Planning and funding allocations would be more inadequate if millions of people with disabilities are left out of ACS survey results. In addition, public officials will be less likely to approve funding and policies if they believe that the population to be served is smaller than it really is.” 

CHN also pointed out that the disability data for children is even less accurate, because the ACS asks only five of the six questions for children under 15. And for children under 6, it only asks two questions, about sight and hearing, leaving out children with a wide range of physical and cognitive disabilities.

On Monday, September 30, the Census Bureau and other federal agencies are holding an all-day meeting with stakeholders to discuss this issue. You can watch it on Census Live. The next steps after this meeting are not yet clear.