After facing criticism for attempting to change how it counts the number of disabled Americans, the United States Census Bureau will meet with groups concerned about the possibility of a significant undercount. Officials from the Census Bureau stated they will meet with disability stakeholders on September 30 to “better understand challenges in data availability and access for their community.”
The meeting follows the Census Bureau’s proposal of major changes to its disability questions as part of an American Community Survey update last year. Officials scrapped the plan after receiving over 12,000 comments, many of which were negative.
Last year, disability advocates said the change would artificially lower their numbers by nearly half. Experts said the decision would have affected whether disabled people would receive critical resources for things like housing, healthcare, and home and community-based services but also whether disabled people were counted accurately in the first place.
Many people also questioned the timing of the proposed changes. It was announced
when their was a sharp increase in the number of people diagnosed with Long Covid. People who contract COVID-19 may experience long-term symptoms. These ongoing health issues are referred to as post-COVID-19 syndrome, post-COVID conditions, long-term COVID-19, and post-acute sequelae of SARS-COV-2 infection (PASC).
Symptoms can include severe fatigue, breathing difficulties, and orthostatic intolerance (low blood pressure upon standing). Many people with Long COVID cannot work full-time, and some are bedridden.
The Census Bureau is hosting the meeting in collaboration with the Office of Management and Budget, the National Center for Health Statistics, the National Council on Disability, The Leadership Conference Education Fund, and the Consortium for Constituents with Disabilities’ Health Task Force, according to Census officials. It will consist of federal representatives, data users, disability advocates, and other members of the community.
Last fall, officials proposed reordering and rewording the six disability questions, as well as adding a new question about psychosocial and cognitive disabilities and speech impairments. Instead of replying with “yes” or “no,” people would be asked to rate the level of difficulty they had with specific functions under the plan. Advocates stated that in order to be considered disabled, a person must answer at least one question with “a lot of difficulty” or “cannot do at all.”
However, advocates had warned that the revisions, which had taken them by surprise, could result in a 40% decline in the count for the disability population. Many people also argued would have far-reaching consequences because Census Bureau data influences decisions on federal funding allocations and numerous government programs.
Now, advocates say it’s important that officials from the Census Bureau interact with the disability community regularly. “It’s critical that our community and our experts inform the way the bureau approaches these revisions, and that they take seriously our concerns about how changes could impact the disability community,” said Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. “There are important policy implications to how the government approaches counting and identifying people with disabilities, and our motto ‘nothing about us without us’ definitely applies here.”
Disabled people are the world’s largest minority. Anyone can become disabled instantly due to an illness, aging, accident, or injury. Hopefully, the Census Bureau will listen to disabled people. Future generations of disabled Americans deserve the opportunities previous generations have gone without.
Sources:
Caprino, Kathy. “The World’s Largest Minority Might Surprise You, And How We Can Better Serve Them.” Forbes, Forbes Magazine, 14 Apr. 2016, http://www.forbes.com/sites/kathycaprino/2016/04/14/the-worlds-largest-minority-might-surprise-you-and-how-we-can-better-serve-them/?sh=737aa3ca496f.
Diament, Michelle. “Census Rethinking How to Count Disability Population.” Disability Scoop, Disability Scoop, 15 Aug. 2024, http://www.disabilityscoop.com/2024/08/15/census-rethinking-how-to-count-disability-population/31009/.
Davis, Hannah E et al. “Author Correction: Long COVID: major findings, mechanisms and recommendations.” Nature reviews. Microbiology vol. 21,6 (2023): 408. doi:10.1038/s41579-023-00896-0
Schneider, Mike. “The Census Bureau Wants to Change How It Asks about Disabilities. Some Advocates Don’t like It.” AP News, AP News, 8 Dec. 2023, apnews.com/article/disability-census-covid19-survey-count-backlash-18678c34ca19e66876faf7dcbdab86f5.
Thompson, Andrea D. and Michael; J. Shea. “Orthostatic Hypotension – Cardiovascular Disorders.” Merck Manuals Professional Edition, Merck Manuals, 12 Nov. 2023, http://www.merckmanuals.com/professional/cardiovascular-disorders/symptoms-of-cardiovascular-disorders/orthostatic-hypotension.