By Carolyn Kennedy and Stephanie Flynt
Last week marked the end of Disability Pride Month and the commemoration of the 32nd anniversary of the landmark Americans with Disabilities Act (ADA), which recognizes that disability rights are civil and human rights and prohibits discrimination against Americans with disabilities.
About 1 in 4 adults in the United States report living with a disability. The COVID-19 pandemic likely contributed to an additional 1.2 million people who have disabilities residing in the United States by the end of 2021; this increase in the disability population has brought more attention to the many barriers to inclusion that people with disabilities face. Despite Americans with disabilities belonging to every demographic and accounting for more than 61 million people across the country, they are often undercounted or not included in federal data collections, such as the decennial census. The consequences of undercounting people with disabilities is a major culprit for lack of access to resources, including transportation, social programming support, and access to health care.
Moreover, the absence of consistent, coordinated, and disaggregated data on the disability community hinders efforts to advance justice, equity, and inclusion. The recommendations produced by the Biden administration’s Equitable Data Working Group in its April 2022 report, A Vision for Equitable Data, included calling for the implementation of best practices for measuring disability. Although federal agencies such as the Department of Health and Human Services (HHS) also gather data on disability, the scale of surveys conducted by the Census Bureau offers much larger samples and would allow for data disaggregation and intersectional analysis.
Centering and involving the disability community in federal data collection and analysis, specifically those carried out by the Census Bureau, is essential. The current lack of disability inclusion and representation in federal data limits the ability of policymakers, program staff, advocates, and researchers to fully address the experiences of people in the United States with disabilities. Gathering and making accessible data that is accurate, inclusive, and representative is a necessary first step towards this goal; this data is crucial to implement and improve existing civil rights laws and policies and to ensure equal opportunities and access to all of society.
Federal programs that are particularly important for the disability community and that rely on census data include protection and advocacy programs, state councils on developmental disabilities, statewide independent living councils, and Section 811 supportive housing for persons with disabilities.
A 2021 report by the National Disability Rights Network describes a pattern of historically low decennial census participation rates for people with disabilities, and the Census Bureau considers the disability community to be a hard-to-count population at great risk of being undercounted and misrepresented. Compounding this problem, which is in part the result of accessibility challenges, are wider systemic inequalities: People with disabilities are also overrepresented among other groups that are considered hard-to-count, such as American Indians and Alaska Natives, Black adults, low-income people, people experiencing homelessness, LGBTQ people, and people who live in areas that are considered hard-to-count.
The Office of Management and Budget must also ensure that the required notice and comment processes for any changes to survey questions are made accessible for people with disabilities. A 2022 report by The Leadership Conference Education Fund highlights how this process should include acceptance of comments in nontraditional formats, such as voice recordings and alternative communication devices, as well as plans for stakeholder engagement efforts, including listening sessions and hearings with the option to participate virtually and by phone, interpreters, large print or Braille documents, audio/video formats, and other communication assistance.
The decennial census count, which focuses on “a basic headcount and minimal demographic data,” does not currently collect data on disability. The Census Bureau does collect disability data through the American Community Survey, which provides critical social, economic, housing, and demographic data and features disability data across six disability types. Data from the American Community Survey are used in conjunction with data from the decennial census to determine how federal funding for essential programs, including those that specifically serve the disability community, is calculated on a yearly basis.
The U.S. News and World Report has used ACS 5-year data to show that disability rates were noticeably higher outside of metropolitan statistical areas than within them. Similarly, the U.S. Department of Veterans Affairs determined from ACS data that veterans with service-related disabilities are concentrated in rural areas. This information can ensure that medical and employment services are targeted where they are needed. The RTC: Rural at the University of Montana, a research and training center funded by the National Institute on Disability, Independent Living and Rehabilitation Research, developed its Disability Counts data lookup tool, which provides accessible data about disability in rural areas using ACS data.
To better count people with disabilities in the decennial census, a good start could be for disability to be considered its own category moving forward. However, it is also important to take into account that while many people might meet the criteria to be considered as a person with a disability, some may not choose to self-identify as such.
The federal government is legally obligated to use its power to dismantle disability-based discrimination and to provide opportunities for everyone, including Americans with disabilities who have experienced disproportionate barriers to full participation in society throughout our nation’s history. Inclusive and accessible data collection processes are essential to ensure the complete protection of the civil rights of people with disabilities and their integration and access to the benefits of democracy.