JHU Disability data expert available to discuss proposed changes to how disabled people are counted in American Community Survey and US Census

The U.S. Census Bureau is accepting public comment on proposed changes to the American Community Survey, the most comprehensive survey of American life, until Dec. 19.

The American Community Survey, conducted annually, will be the first use of the new questions proposed by the U.S. Census Bureau to begin use in 2025. However, these changes to disability data collection could erase about 20 million people with disabilities; they will no longer be counted as “disabled.”

A Johns Hopkins School of Nursing expert on disability health and justice is available to discuss with reporters how the proposed changes are raising concerns among disability advocates.

Dr. Bonnielin Swenor is founder and director of the Johns Hopkins Disability Health Research Center, and Endowed Professor for Disability Health and Justice at the Johns Hopkins School of Nursing. She has been an associate professor since June 2019, with joint faculty appointments in the Departments of Epidemiology and Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health, at the Wilmer Eye Institute at the Johns Hopkins School of Medicine, and at numerous centers across the university.

In a recent OpEd on the topic for Stat News, Swenor and Scott Landes describe the proposed change and potential impact.

The Census proposes using a different set of disability questions from the Washington Group (WG) despite evidence that they undercount the disabled population by up to 42 percent. What’s more, the Census has historically undercounted marginalized groups, like Black, Hispanic, and American Indian populations, and now invest substantial time, energy, and dollars into trying to ensure that they “count everyone.” Undercounting the population will result in a drastic slashing of resource allocation for a population that faces profound and unaddressed inequities and health disparities.

Swenor urges the Census to stop efforts to change the disability data questions and instead invest in developing an improved approach to disability data collection. That requires actively engaging with the U.S. disability community to develop and roll out new measures.