If the US Census Bureau goes ahead with changes to how it collects disability data, roughly 20 million people with disabilities will be excluded from the data because many people with disabilities would not be counted under new questions the Census Bureau is proposing to use in the annual American Community Survey (ACS) starting in 2025.
As people with disabilities and as scholars who study disability measurement and use disability data for their research, we are deeply concerned by this proposed change. If the Census changed the disability question, the national disability estimate would be artificially reduced by almost half, according to the Census Bureau’s own estimates. Because disability prevalence has increased, not decreased, as a result of the COVID-19 pandemic, any effort to undercount people with disabilities is alarming.
Researchers and policymakers rely heavily on census data from the Decennial Census and the annual ACS to help make informed decisions about federal, state, and local resource allocations and to develop evidence-based policies for education, housing, infrastructure, health, support services, and emergency response.
The census has historically undercounted certain minority groups, including Black, Hispanic, and Native American. Recognizing the problems this undercounting creates, the census devotes significant time, effort, and resources to ensuring that “everyone counts.”
But proposed changes to the disability question, first presented at the September 2023 Census Science Advisory Committee meeting, would, as proponents acknowledge, lead to an undercount of people with disabilities, the largest minority group in the United States.
The Census currently uses the ACS disability questions, a standard established by the Department of Health and Human Services. The ACS disability questions were created to measure the disability status of the U.S. population and were added to the Census in 2008 in response to concerns from the disability community. Since then, these disability questions have been used in 17 nationally representative surveys and have provided consistent estimates of the U.S. population with disabilities. These questions ask respondents to answer “yes” or “no” if they have difficulty with six functional tasks (vision, hearing, mobility, cognition, self-care, and independent living). Anyone who answers “yes” to whether they have difficulty with any of these six functional tasks is automatically counted as disabled. Any change to this method of counting disabilities should be carefully considered, as it would result in an undercounting of people with disabilities and a loss of an opportunity to examine trends in the data over time.
The Census is proposing the use of a different set of questions on disability, the Washington Group (WG) questions. These questions were first developed in the early 2000s and are currently used in two U.S. surveys, the National Health Interview Survey and the National Nutrition Survey, despite evidence that they underestimate the disabled population. Rather than a simple yes or no question, the WG asks respondents to report their level of difficulty with the same six functional tasks. The WG then uses pre-determined cut points to indicate what level of functional difficulty counts as a disability. Thus, a person who reports difficulty with any of the six functional tasks included in the WG questions, but whose level is lower than the pre-determined cut point assigned by the WG, would not be considered disabled. In effect, the WG questions allow those who own and use the data to act as gatekeepers in determining how disabled a person is to be counted.
The Working Group’s approach to collecting data on disability is at odds with the Census’ goal to count everyone. The Working Group explained that in creating the question, “it was not our intent to identify all people with disabilities in all communities.” It is not surprising, therefore, that multiple studies have found that the Working Group’s questions perform worse than the ACS’s disability questions in counting people with disabilities. In fact, the Census found similar results in tests of the Working Group’s questions conducted from 2020 to 2022. The Working Group undercounted people with disabilities, reducing the estimated size of this population by 42%, from 14% to 8% (see slide 12). If that were to be the case in the Census, it would mean that 20 million Americans would be removed from the ranks of people with disabilities. That would lead to a significant reduction in resource allocations for a population that faces severe and unaddressed inequalities and health disparities. However, the Census’ plan is only to “tell” the disability community after making these changes (see slide 12), which is a long way from community engagement.
The ACS question is not perfect either. Like the WG approach, the ACS question fails to accurately count large groups of people with disabilities, including those with mental, learning, intellectual, and developmental disabilities, and those with chronic disabilities like long-COVID. Excluding these disability groups would result in inaccurate disability estimates and is something the Census should address as a priority. After all, if the disability questions used in the Census were accurately counting all of these groups, the Census should count more Americans as disabled, not fewer.
Under the Affordable Care Act, people with disabilities must be considered a core population group. Census policy is aligned with that approach, specifically stating that disability data “is used to plan and fund programs for people with disabilities. Disability data is also used to evaluate other government programs and policies to ensure they address the needs of all groups fairly and equitably, and to enforce laws, regulations, and anti-discrimination policies.” Undercounting people with disabilities leads to a lack of understanding of the interventions and services needed to ensure equity for people with disabilities in the United States, undermining these efforts and leading to reduced funding and resources needed to achieve that goal.
A recent public meeting of the Census National Advisory Committee (NAC) revealed that the U.S. disability community has not been engaged with these changes. The meeting also highlighted that there is no scientific basis for the changes, especially given the Census’ goal of accurately counting demographic groups. During the briefing, NAC members expressed shock that the disability community was not more involved and recommended that the proposed changes to the WG questions not be adopted before or without first consulting with representatives of diverse and intersectional members of the disability community.
We share the NAC’s concerns and call on the Census Bureau to stop efforts to change the disability data question and invest in developing improved ways to collect disability data. This will require active collaboration with the U.S. disability community to develop and deploy new measures. People with disabilities matter. They need to be active participants so we can be counted accurately.
Bonnielynn Swener, PhD, MPH, is director of the Johns Hopkins University Center for Disability and Health Research. Scott D. Landes, PhD, is an associate professor of sociology at Syracuse University.