Facing Backlash, Census Scraps Overhaul Of Disability Questions
The U.S. Census Bureau says it will hold off on changes to the way it determines the number of Americans with disabilities that advocates warned could lead to a severe undercount.
Census Bureau Director Robert L. Santos said this week that his agency will not make any modifications to the disability questions in its American Community Survey for 2025.
The decision comes after the Census Bureau proposed significant updates to the survey in October. As part of the plan, the agency sought to reorder and reword its series of six disability questions and add a new question asking about psychosocial and cognitive disability as well as problems with speech.
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In addition, instead of asking people to respond with “yes” or “no,” the proposal called for people to rate the level of difficulty they have with various functions. Individuals would have to respond to at least one question with “a lot of difficulty” or “cannot do at all” in order to be considered as having a disability.
Disability advocates rallied against the changes, which they said caught them by surprise, warning that the revisions could lead to a 40% drop in the count for this population. Since Census Bureau data is used to establish federal funding allocations and decisions on programs ranging from affordable housing to health care, civil rights and more, the consequences could be severe, they said.
More than 12,000 comments were submitted in response to the Census Bureau proposal, the majority of which “expressed concerns with the proposed changes to the disability questions,” Santos wrote in a blog post this week.
“Based on that feedback, we plan to retain the current ACS disability questions for collection year 2025,” Santos indicated. “Along with our colleagues at (the Office of Management and Budget), (the National Center for Health Statistics) and other statistical agencies, we will continue our work with stakeholders and the public to better understand data needs on disability and assess which, if any, revisions are needed across the federal statistical system to better address those needs.”
This spring, plans are underway to bring together various stakeholders in the disability community, federal agencies, researchers, data users and others to discuss “data needs and data uses surrounding the topic of disability,” Santos said.
Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, said she’s relieved that the Census Bureau is not moving forward with the proposed changes, particularly in light of the fact that the plan was put forth without consulting the disability community.
“Changes to these questions can have tremendous impacts on who is able to get services and how much funding programs that serve us get,” she said. “The American Community Survey’s current disability measures already drastically undercount people with disabilities; the proposed changes would have significantly worsened this undercount, leaving us with a misleading and incomplete picture of disability in the U.S.”
Gross and other advocates indicated that they’re optimistic that with involvement from stakeholders the process can lead to a more accurate count of the disability community.
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