The U.S. Census Bureau is accepting public comment until Dec. 19 on proposed changes to the American Community Survey, the most comprehensive survey of American life.
The annual American Community Survey will be the first to use new questions that the U.S. Census Bureau has proposed to start using in 2025. But these changes to disability data collection could result in roughly 20 million people with disabilities disappearing: They would no longer be counted as “disabled.”
An expert on disability health and justice from the Johns Hopkins School of Nursing speaks to reporters about how the proposed changes are raising concerns among disability advocates.
Dr. Bonilynn Swenor is the founder and director of the Johns Hopkins Center for Disability Health Research and the Johns Hopkins Endowed Professor of Disability Health and Justice in the Johns Hopkins School of Nursing. She has served as an associate professor since June 2019 and is adjunct professor in the departments of Epidemiology and Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health, Wilmer Eye Institute at the Johns Hopkins School of Medicine, and in multiple centers across the university.
In a recent op-ed piece on the topic for Stat News, Swenor and Scott Landes explain the proposed changes and their potential impacts.
The Census is proposing to use a different question on disability than the Washington Group (WG) question, which evidence suggests undercounts the disabled population by up to 42 percent. Additionally, the Census has historically undercounted marginalized groups such as Blacks, Hispanics, and Native Americans, and now spends significant time, effort, and money to ensure it “counts everyone.” Undercounting the population results in significantly reduced resource allocations for people who face severe, unaddressed inequalities and health disparities.
Swenor calls on the Census Bureau to abandon efforts to change the disability data question and instead invest in developing improved approaches to disability data collection, including actively partnering with the U.S. disability community to develop and deploy new measures.