Changes in collecting disability info

How are people with disabilities counted as part of the U.S. Census? After a backlash from activists, the U.S. Census Bureau […]

Person filling out a form.

How are people with disabilities counted as part of the U.S. Census? After a backlash from activists, the U.S. Census Bureau has set aside proposed changes to questions about disability. 

The changes were to be part of the 2025 American Community Survey. The argument against changing the questions is that changes could artificially reduce the number of disabled people counted by more than 40 percent. 

In mid-February the Census Bureau announced that it would retain the current American Community Survey disability questions for year 2025 after researchers and the disability community pushed back. The current set of six questions in the survey are already criticized as being very limited, and not effective in showing a range of types of disabilities. Consideration has been sought for people living with mental health issues, developmental disabilities and chronic health issues such as long COVID. 

The American Community Survey is an ongoing survey that provides vital information on a yearly basis about the nation and its people. Information from the survey generates data that help inform how trillions of dollars in federal funds are distributed each year. Survey numbers in turn affect resources for various programs, housing and education. It also is used when enforcing the Americans with Disabilities Act (ADA) and looking at the programs the ADA is tied to. 

Census Bureau Director Robert Santos posted on his blog that bureau staff will meet with disability community advocates, to decide what changes are needed for the survey questions. He said, “We will continue our work with stakeholders and the public to better understand data needs on disability and assess which, if any, revisions are needed across the federal statistical system to better address those needs.” 

The Census Bureau and the National Center for Health Statistics have reviewed the public feedback. They’ll work on changes, which have to be approved by the federal Office of Management and Budget. 

The Census Bureau is preparing a final proposal to federal officials for approval regarding the changes proposed to other topics including household roster, educational attainment, health insurance coverage, labor force questions, solar panels, electric vehicles and sewage disposal. 

The final proposal will be submitted in spring 2024, accompanied by a Federal Register notice detailing the final recommendations and seeking public comment. 

The survey is considered to be the most comprehensive survey of American life. Its many topics include disabilities. But it illustrates the challenges in getting a handle on the number of disabled people in the U.S. In some cases not everyone wishes to self-disclose a disability. 

Estimates of number of disabled U.S. residents can vary. The Centers for Disease Control and Prevention estimated in 2023 that up to one in four adults or 61 million people have a disability. 

The existing survey asks respondents to answer yes or no questions about hearing, seeing,  concentrating, remembering or making decisions because of a physical, mental or emotional condition. Questions cover whether or not a respondent can walk, climb stairs, dress himself, bathe himself or perform everyday tasks. Another factor with questions is deciding the level of difficulty of tasks and activities. 

The proposed changes would have four choices: no difficulty, some difficulty, a lot of difficulty’ and cannot do at all. A person would be counted as disabled if they answered ”cannot do at all” or ”a lot of difficulty” for any task or function. A test run showed that the percentage of respondents defined as disabled dropped from 13.9 percent to 8.1 percent with the new questions. 

The Urban Institute, a Washington, D.C.-based public policy research nonprofit, has done its own analysis to provide guidance on how to more accurately estimate the disabled population in the US. The institute hosted an online forum in late February to discuss how to measure disability in a more inclusive manner. 
Its recommendations include: 

Consult with disabled researchers and advocates when evaluating disability measurements. Any new measures should be undertaken only with deep and meaningful engagement with the disability community. 

Explore alternative survey questions that would more accurately and fully capture the disabled population. The current and proposed set of disability questions do not reflect the entire disability community. 

Evaluate the potential impacts of any future proposed change in disability questions. The Census Bureau should consider how a change in its questions may impact the ability of disabled people to receive the supports and protections they need. 

This article was compiled by Editor Jane McClure with information from the Urban Institute, U.S. Census Bureau and other news sources. 

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