Disability advocates push for improved census questions ======================================================= * Natalie McGill ![Figure1](http://www.thenationshealth.org/http://www.thenationshealth.org/content/nathealth/54/2/1.2/F1.medium.gif) [Figure1](http://www.thenationshealth.org/content/54/2/1.2/F1) Helena McLeod, who has Charcot-Marie-Tooth disease, a disorder that causes damage to peripheral nerves, floats in a pool with her husband, Darren, last year. The way that people with disabilities are counted by federal agencies influences programming and funding, but many people are missed by surveys, advocates say. Photo by Joseph Prezioso, courtesy AFP/Getty Images When news spread last year that the U.S. Census Bureau was considering a change that could mean millions of people with disabilities would not be counted in surveys, community advocate Scott Landes, PhD, helped sound the alarm. Feedback from Landes, an associate professor in Syracuse University’s sociology department, was among more than 12,000 comments submitted to the bureau urging it to reconsider the proposed changes, which would have impacted questions on how well people can see, hear and move. Citing the deluge of negative feedback, the bureau announced on Feb. 6 it was backing off the plan, which could have reduced the American Community Survey count of people with disabilities by 40%. But for Landes, who is immunocompromised and has visual and hearing impairments, the small victory reminded him that the existing Census Bureau surveys already do not go far enough to accurately count the number of people with disabilities in the U.S. “The ACS questions, they’re flawed themselves,” Landes told *The Nation’s Health.* “Most specifically, they don’t include people with intellectual developmental disability, mental health disabilities, physical health-related disabilities, communication disabilities. Those are the four categories most obviously left out, because the ACS questions are just hearing, vision and mobility.” The Census Bureau update was prompted in part by advice from the National Center for Health Statistics, which recommended the agency use a set of questions that would align the U.S. with international disability data. The revised census questions would have excluded people who have “some difficulty” with physical movement, hearing or seeing from disability counts. A November analysis from the Census Bureau found the exclusion would mean the U.S. disability count could erase about 20 million people. While the Census Bureau decision to back off the revision was a welcome one, the existing six questions used to measure disability in the ACS are inadequate, according to Susan Popkin, co-director of the Urban Institute’s Disability Equity Policy Initiative. Popkin has Sjögren’s syndrome, a chronic auto-immune disorder with symptoms such as joint pain and fatigue. She said some days are worse than others. “It’s kind of an outdated view of disability that goes back to people with injuries, worker injuries, people thinking it’s only a certain category of disability,” Popkin told *The Nation’s Health.* “The definition of disability in reality has expanded and it’s become more of a demographic identity.” Census disability data is important because local, state and federal governments use it when allocating funding for programs that offer support and services for people with disabilities, such as housing assistance. “We know there are some very specific programs that we could actually see would be affected, like some transportation funding for older adults and people with disabilities,” Popkin told *The Nation’s Health.* “It would have real-world impacts and would affect the amount of resources that are available.” The Census Bureau must also do a better job at counting the number of people with disabilities in rural areas, Popkin said. As of 2021, less than 20% of the U.S. population lived in rural areas, but people who did were more likely to have a disability than people living in urban areas, according to census data. In a Feb. 6 blog post, Census Bureau director Robert Santos pledged to connect more with people with disabilities in a “whole-of-government approach” after reviewing public comments about the lack of engagement with the disability community. He said that the bureau, NCHS and Office of Management and Budget will convene a meeting with federal officials, community stakeholders, researchers and more “to discuss data needs and data uses surrounding the topic of disability.” APHA Disability Section Chair Vijay Vasudevan, PhD, MPH, said meaningful engagement will require involving people with all kinds of disabilities so that a range of measurements are accurately described and captured. “They could help elaborate what the potential impacts might be,” said Vasudevan, director of data science and evaluation research for Autism Speaks. “They could also work with someone from the National Center for Health Statistics and other groups to understand what the limitations are by a question wording, how a question wording might impact a questionnaire. That way we get that true participatory model between these key stakeholders.” Landes suggested forming a task force similar to the OMB’s Interagency Technical Working Group on Race and Ethnicity Standards, a collection of government agencies and departments such as the Department of Transportation and the Bureau of Labor Statistics aimed at improving race and ethnicity government data. ![Figure2](http://www.thenationshealth.org/http://www.thenationshealth.org/content/nathealth/54/2/1.2/F2.medium.gif) [Figure2](http://www.thenationshealth.org/content/54/2/1.2/F2) A woman with multiple sclerosis sorts pills. Advocates want to ensure federal surveys capture people with a range of disabilities. Photo by Kurt Wittman, courtesy UCG/Universal Images Group/Getty Images “I don’t think that would be hard to put together,” Landes said. “There are leading disability advocates, agencies, organizations, researchers, disabled people who are in all types of positions of representation and leadership around the country that I know would be more than willing to sit down with the Census (Bureau).” Dom Kelly, MS, CEO, president and co-founder of New Disabled South, said policy and advocacy organizations like his can help expand the Census Bureau’s perception of disability issues. Kelly, who has cerebral palsy, said one of the focal points of his organization is increasing civic engagement beyond getting people to vote. Groups like his can fill the gap on educating people about the importance of the census and how being counted will impact their quality of life, he said. “My hope is that the bureau can work with organizations like ours on creating those resources,” Kelly told *The Nation’s Health.* “Maybe there’s funding opportunities they can give to groups like ours to be able to do direct organizing campaigns and getting out there in the community. Collaborating on work like that would be really impactful.” ![Figure3](http://www.thenationshealth.org/http://www.thenationshealth.org/content/nathealth/54/2/1.2/F3.medium.gif) [Figure3](http://www.thenationshealth.org/content/54/2/1.2/F3) The way questions are worded in surveys can significantly impact data on people with disabilities. Photo by SomethingWay, courtesy iStockphoto The Census Bureau is not the only body making adjustments to its disability measures. The Urban Institute is exploring new ways of capturing disability as part of its biannual Well-Being and Basic Needs Survey, Popkin said. For example, the institute has used its survey to capture data on long COVID, finding that many people have been affected by the condition, which can cause fatigue and other potentially disabling symptoms. Working with researchers and advocates who work regularly on disability can help the Census Bureau capture more such populations that might be excluded. “If we change the ACS-6, that’s a big decision,” Popkin said. “We should do it thoughtfully and make sure we’re doing something that’s going to be more inclusive, not less.” For more information on the American Community Survey, visit [www.census.gov/acs](http://www.census.gov/acs). * Copyright The Nation’s Health, American Public Health Association