In October 2023, the Census Bureau requested public comment on a number of proposed changes to the American Community Survey (ACS). One of those changes would replace the series of six functional limitation questions in the ACS that have been used since 2008 as a way to identify and count people with disabilities in the U.S. This change was proposed with little or no input from the disability community or disability researchers and advocates, even though ACS estimates of disability affect the funding, quality, and effectiveness of federal and state disability-related services and supports, civil rights enforcement, and local public health and emergency planning, to name only a few examples. The ACS is also the rare national survey that includes information about the lives of people who live in institutions such as nursing homes and prisons.
The Bureau received thousands of public comments. Some of these comments were submitted by individuals who used the support of a template comment from disability advocates, but even looking at the smaller group of unique submitted comments, over 90% opposed the change and sought further consultation and testing. Disability advocates, researchers, and organizations engaged the Census Bureau to begin working together on developing the best way to achieve accurate disability counting and update the measurement of disability under the ACS in light of rich diversity within the disability community. On September 30, 2024, the Census Bureau held its long-awaited meeting with stakeholders on Disability Data Needs. The meeting was live-streamed with attendees in-person and online. DREDF’s Policy Director, Silvia Yee, was one of several panelists that included disability advocates, community representatives, and researchers with disabilities, as well as federal agency representatives and data users. The stakeholder meeting was hosted by the Census Bureau and sponsored by the Bureau, the Office of Management and Budget, the National Center for Health Statistics, the National Council on Disability, the Leadership Conference Education Fund, and the Consortium of Constituents with Disabilities Health Task Force, all of whom helped plan the accessible meeting.
Silvia Yee and Senior Policy Analyst Mary Lou Breslin have been active in advocating for increased and improved disability data collection for several years. This fall and summer they spoke on a panel at the Disability Health Equity Research Network’s upcoming Annual conference on September 17, 2024, focused this year on “Moving Disability Measurement Forward.” Yee also presented on disability data at an August 30, 2024 webinar sponsored by the Leadership Conference on Civil and Human Rights fostering ACS Awareness and including speakers that addressed the data needs of racial, ethnic, and LGBTQ+ groups in the ACS. DREDF past work on disability data collection includes taking up federal public comment opportunities and publishing data analyses and recommendations.