The Census Bureau Has a Chance to Fix How It Measures People With Disabilities

Every year, the United States Census Bureau conducts the American Community Survey to capture up-to-date information on people’s experiences on everything from employment rates to housing costs. And every year, the ACS minimizes the lives and needs of Americans with disabilities.

Today, the ACS estimates that the number of Americans with disabilities is just 44 million, though research has shown that this is an underestimate. Indeed, one 2022 study from researchers at the University of Kansas and the University of Montana found that the ACS disability-related questions failed to capture some 20% of respondents with self-reported, enduring disabilities. That would amount to an estimated additional 11 million disabled people in the full U.S. population.

The current ACS questions about disability primarily focus on functional disability, meaning challenges that people face with activities of daily living, such as dressing, walking or running errands. However, these questions particularly fail to include people with intellectual and developmental disabilities (such as autism or Down syndrome) or mental health disabilities (like bipolar disorder), not to mention chronic illnesses including long COVID. Those with these conditions may still identify as disabled and face challenges with day-to-day activities that are missed by questions. Additionally, many people with disabilities may be overlooked if the impacts of their conditions are mitigated by resources or services, such as medications, community supports or mobility aids like wheelchairs.

Clearly, the ACS questions about disability need to change to better account for people’s real experiences in the U.S. Encouragingly, the Census Bureau seems willing to make changes, and it recently put forward a plan to redefine disability with a new set of questions. However, the agency paused its plan last month, after the disability and research community expressed significant concerns that the proposed new approach would exacerbate its underestimate of the disabled population instead of expanding its definition to get a more accurate and inclusive measurement. We highlight the implications of the proposed change in a new analysis we recently published at the Urban Institute.

ACS data carry weight. They give us population estimates of households’ financial well-being, service uptake, housing burden and so much more. The most recently available data, from 2021, show that 353 federal programs – everything from the Children’s Health Insurance Program to the Low Income Home Energy Assistance Program – determine eligibility and receive funding allocations based on a variety of ACS data. An underestimate of people with disabilities could diminish the already limited funding for supports and resources for them, as well as weaken discrimination protections. What’s more, state and local policymakers also use these estimates for planning and program evaluation and to ensure equity in their design and implementation.

For example, in 2021, Davidson County, Tennessee, which includes the city of Nashville, used ACS data to help low-income homeowners who are disabled or seniors take advantage of a property tax relief program. Local officials used ACS estimates to better understand how many disabled residents were in their community and were eligible for this program. The ACS estimates that 11.4% of Davidson County’s 703,600 residents have disabilities, with the median annual income among those residents at just $30,735 – nearly $14,000 less than that of non-disabled residents.

When county officials saw that far fewer than the expected number of residents, based on the ACS estimates, had applied for the tax relief program, officials went door-to-door, hosted info sessions and posted on social media channels to spread the word about what was available to those who qualified. As a result of this work, more than 100 additional homeowners took up the program and received much-needed support, and there are likely even more who would do so with further outreach.

Consult with disabled researchers and advocates. The Census Bureau should pursue true, meaningful engagement with the disability community, beyond the efforts that were made as a part of the previous proposal. This work can include engaging in real conversation with diverse groups of people with disabilities and advocacy groups representing different communities. Engagement opportunities should be accessible – with appropriate accommodations, such as sign language or Communication Access Realtime Translation interpreters, available so people with a variety of disability types can participate.

Explore alternative questions that would more accurately and fully capture the disabled population. Current legal protections for people with disabilities, including under the ADA, apply to a much wider group than those currently captured by the ACS. They protect people with disabilities who face discrimination and unequal opportunity due to stigma and lack of accommodation, regardless of whether their specific impairments would be identified by the current questions.

While the Census Bureau argued that its previous proposal would better meet international standards and provide more granularity, as proposed, we found it would have reduced the official estimate of people with disabilities by almost half, further jeopardizing the ability of the ACS to meet its statutory requirement to monitor civil rights and anti-discrimination law. A more inclusive and comprehensive set of questions would capture a more complete view of the disabled community and help to enforce the ADA and other discrimination protections.

Evaluate the potential impacts of any proposed change. Given the large number of people who rely on disability programs and protections in the U.S., it is vital the Census Bureau carefully considers the impact that a change in data collection and estimated prevalence may cause – for example, how it may impact the funding for or distribution of supports and services for disabled people. The agency has an opportunity to minimize the harm of any future question changes by more fully considering – and if necessary, mitigating – these impacts before implementation.

By reopening its consideration of the ACS disability questions, the Census Bureau can improve its current estimate, which consistently excludes millions of disabled Americans. Any changes to the disability questions should seek to capture a more inclusive group of people with disabilities by expanding, rather than contracting, our current definition to better reflect reality.