Counting everyone: evidence for inclusive measures of disability in federal surveys

The US Census Bureau has used the American Community Survey six-question set (ACS-6) to identify disabled people since 2008. In late 2023, the Census Bureau proposed changes to these questions that would have reduced disability prevalence estimates by 42%. Because these estimates inform funding and programs that support the health and independence of people with disabilities, many disability researchers and advocates feared this change in data collection would lead to reductions in funding and services. While the Census has paused-but not ruled out-the proposed changes, it is critical that alternate, more inclusive disability questions be identified and tested. We used data from the 2023/2024 National Survey on Health and Disability to explore alternative questions to identify disabled people in national surveys. A single broad question about conditions identified 11.2% more people with disabilities, and missed significantly fewer people with psychiatric disabilities compared to the current ACS-6 questions. A combination of a broad question and the existing ACS-6 questions may be necessary to more accurately and inclusively identify people with disabilities.