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February 6, 2024 update:
Due to overwhelming pushback from disabled people, advocates and researchers, the Census announced on February 6, 2024 that it will not make changes to the disability questions in the American Community Survey in 2025 and will engage with the disability community on potential changes. While the work is not finished, this is a tremendous victory that is due to disabled people’s leadership and advocacy. What occurred with this process is a critical reminder about the need to center and listen to disabled people – particularly when making decisions that impact their lives. Thank you to all who supported the disabled community in preventing these changes. We will share more on next steps soon.

Originally published December 5, 2023:

A new proposal from the U.S. Census Bureau would change the definition of disability in the American Community Survey – and their own research shows that in doing so, it would reduce the official count of disabled people by 40 percent. Since the American Community Survey is used to help enforce civil rights and to allocate trillions in funding, this change would have significant implications for disabled people.

So what exactly is the Census Bureau proposing? The agency has suggested shifting from the current six yes or no questions in the American Community Survey to a scale that ranges from “no difficulty” to “cannot do at all” on specific tasks to assess level of disability. However, the Census Bureau recommends only counting people as disabled if they mark “a lot of difficulty” completing a task or “cannot do at all” – leaving out people who say that they have “some difficulty,” even in multiple areas. Because disability is so dynamic, this scale and the proposed cut-off can unfortunately exclude many people who are disabled. A scale that deems people “not disabled enough” to count is not consistent with our current understanding of disability – or even how disability is viewed under the law.

To be clear, the current measure of disability in the American Community Survey is not ideal and must be improved to better count the disabled community. The existing questions only assess functional disabilities as they relate to hearing, vision, cognition, movement, self-care and independent living. These questions are especially likely to undercount people with chronic illnesses (like diabetes or endometriosis) and mental health disabilities, and may also undercount people with chronic pain – all of which are covered under the Americans with Disabilities Act. Women are more likely to experience chronic pain, gastrointestinal disorders and autoimmune disorders, for example. Experts estimate that the current measure undercounts disabled people by about 20 percent.

But the proposed new measure fares even worse, missing more than half of people with mental health disabilities or chronic illness and 43 percent of disabled people overall – and it does so at a time we are seeing an increase in the number of disabled people in the wake of the COVID-19 pandemic. Decreasing this rate in official reports and tables will only further marginalize the disabled community.

What does this mean for women? The National Partnership’s analysis reveals that women and girls are currently just over half of disabled people in the United States. Adopting this new definition would cut the counted number of disabled women and girls in the United States by approximately 9.6 million, including:

• Six million white women and girls,
• 1.3 million Black women and girls,
• 1.4 million Latinas,
• 358,000 Asian American, Native Hawaiian or Pacific Islander women and girls,
• 69,000 American Indian and Alaska Native women and girls,
• 404,000 multiracial women and girls and
• 166,000 women veterans.

These are more than just numbers in a report – the American Community Survey is used to distribute trillions of dollars in funding and help agencies enforce civil rights laws. Slashing the number of people who are categorized as disabled is likely to have significant impacts on programs related to housing, transportation, health care, education and more – many of which use American Community Survey data to assess their needs, and some of which are required to do so by law. It will also hamper federal agency enforcement of civil rights laws, which prohibit discrimination against disabled people in employment, public accommodations, education, health care and more. Civil rights enforcement bodies rely on these data to help identify discriminatory patterns and practices impacting groups of individuals. Many claims that address the ways that “neutral” policies impact protected classes, including disability, use statistical analysis. For disabled women, particularly disabled women of color, who may rely on federally-funded disability supports and services, and who face unique forms of discrimination based on the intersection of their identities, these losses would be devastating.

We are concerned that these changes were proposed without adequate consultation with the disability community, including advocates and researchers. When disabled people say, “Nothing about us without us,” they also mean changes about the way the community is counted. Disabled people refuse to be made invisible.

The disability measures in the American Community Survey are in dire need of updating to better capture the whole disability community. But the Census Bureau’s proposal – which only exacerbates the marginalization of the disabled community – is not the right answer. We urge the agency to engage the disability community to develop the best possible measures.

Click here to comment on the current proposal by December 19.

Methods note: Authors’ analysis using the 2021 American Community Survey. Latinas are not included in racial categories and are analyzed separately. The authors are grateful to Anwesha Majumder for analytical support.