Researchers Concerned About Proposed Changes to U.S. Census

A proposed change to the U.S. Census could significantly reduce the number of disabled people who are included in that category. The change has major policy and service implications for people with disabilities, which concerns disability researchers such as Jean Hall.

Hall, director of the Institute for Health and Disability Policy Studies at the KU Life Span Institute, said that changes to the American Community Survey, the most comprehensive survey of American life, had the potential to significantly disrupt the knowledge of and ability to conduct research about Americans with disabilities.

“Proposed new questions severely undercount all people with disabilities, but particularly those with disability due to chronic conditions, including long COVID, and those with psychiatric disabilities," Hall said. “As such, the proposed questions are biased and will cause greater harm to those most undercounted."

Through Dec. 19, the Census Bureau is accepting public comment on the proposed changes. Hall noted that if approved, the changes to the survey could take place as early as 2025.

In testing done by the Census Bureau last year, people identified as having a disability using the current set of questions, compared to the proposed ones, went from 13.9% to 8.1%. 

But disabled Americans are already undercounted according to prior research conducted by Hall and colleagues.  In research published in the journal Health Affairs in October 2022, they found that federal surveys already undercount people with disabilities by as much as 40%.

"If the disability population is arbitrarily cut by more than 40% due to the proposed question changes, we can only assume that funding for disability programs will similarly be slashed,” Hall said in a letter to the U.S. Census Bureau signed by 288 others that outlined concerns. 

Other concerns include:

• The proposed changes artificially deflate the disability rate.
• Reducing the disability rate could negatively impact services.
• Proposed changes will significantly disrupt our knowledge of, and ability to conduct research about, Americans with disabilities. 
• Continuity of data is important for tracking efforts to address disability inequities.
• People with disabilities have been excluded from discussions regarding proposed question changes, which is in direct contradiction to the spirit and intent of Executive Order 13985.

As a result of these concerns, Hall and others recommend postponing the changes and establishing a national taskforce on disability data and working with the federal Interagency Committee on Disability Research to develop an appropriate approach to updating how disability status is assessed.