The Data Learning Collaborative of the Missouri Center for Public Health Excellence issued a public comment in December on proposed changes to data collection of disability status by U.S. Census Bureau. Led by Allie Bodin, MPH, CPH, Health Data Analytics and Informatics Manager at MOCPHE, the collaborative sought to bring attention to current challenges with data collection of disability in the U.S.

Comprised of 41 Missouri public health data professionals representing 41 member and partner organizations in the field of public health, the collaborative aims for data-driven, equity-centered public health practice in Missouri. Working with disability data sources like the American Community Survey (ACS), Behavioral Risk Factor Surveillance System (BRFSS), National Health Interview Survey (NHIS), and Washington Group Short Set (WG-SS), the group expressed concerns about data collection of disability status in the U.S. Their main arguments, as relayed in the public comment, include how:

• Collection standards already fail to provide adequate insight into disability and its functional impact on quality of life (Markesich & Feldman, 2023).
• Persons with disabilities have expertise in disability data, and need to be consulted in all activities that develop, implement, and analyze data.
• The potential for underestimating prevalence, and underfunding public services, rises with creating broader categories for defining disability.

The collaborative called upon the U.S. Census. Bureau to create a National Task Force to improve and expand the federal collection of disability data. That task force must include public health data professionals amongst the content experts involved. The group should create a comprehensive, integrated plan to collect and make disability data accessible nationwide, using that data to advance health equity for persons with disabilities.

In early February, officials announced that the Census Bureau will not change how questions about disabilities are worded on the 2025 American Community Survey. Officials will meet with representatives of the disability community to refine future changes following confusion and negativity about modifications the Bureau proposed.