The U.S. Census Bureau has decided to suspend its efforts to modify the way it inquires about disabilities, following a significant backlash.

Supporters of individuals with disabilities had raised concerns that modifications to the disability inquiries on the American Community Survey by the bureau would inaccurately decrease their representation by over 40%, restricting access to crucial resources such as housing, education, and program aid. They further contended that they were not adequately consulted in regards to this significant revamp.

Scott Landes, a visually impaired associate professor of sociology at Syracuse University, expressed his excitement by saying “Good news. Good news. Good news.” He stated that the message to engage had been received.

Census Bureau Director Robert Santos stated that the bureau intends to convene with disability advocates to assess necessary modifications to the questions in order to accurately represent the variety of disabilities. This will be done while maintaining the existing questions about disability on the 2025 American Community Survey.

In a blog post, Santos stated that they will continue collaborating with stakeholders and the public to gain a deeper understanding of data requirements for disability. They will also evaluate whether any changes are necessary within the federal statistical system to better meet those needs.

The American Community Survey is a thorough examination of various aspects of American life, such as travel times, internet usage, familial situations, income, education, disabilities, and military involvement. It covers a wide range of topics.

The current inquiries require participants to indicate if they face challenges with seeing, hearing, concentrating, remembering, walking, dressing, or performing daily activities due to a physical, mental, or emotional condition. If the response is affirmative, it is considered a disability.

Under the proposed changes, which follow international standards, respondents would be allowed to answer most of the same questions with four choices: “no difficulty,” “some difficulty,” “a lot of difficulty” and “cannot do at all.” A person would be counted as disabled if they answered “cannot do at all” or “a lot of difficulty” for any task or function. The changes also would have added a query on whether respondents have trouble communicating.

Those in favor of the suggested modifications argued that they would have offered more detailed information and a better understanding of disabilities, which could then be used to improve the provision of services and resources.

During a trial, the proportion of participants identified as having a disability decreased from 13.9% with the current questions to 8.1% with the proposed modifications. However, expanding the definition to encompass those with “some difficulty” resulted in an increase to 31.7%.

The suggested modifications to the inquiries about disabilities were just a few of the adjustments the Census Bureau intended to present to the Office of Management and Budget for approval this year. As a part of this procedure, the Census Bureau asked for input from the public and received over 12,000 responses, with most expressing worries about the changes to the disability questions.

On Tuesday, advocates announced their intention to collaborate with the bureau in order to create inquiries that accurately encompass a wide variety of disabilities. This includes individuals with mental health concerns, developmental disabilities, and chronic health conditions, such as those experienced by those affected by long COVID.

Bonnielin Swenor, director of the Johns Hopkins Disability Health Research Center, expressed in an email that although our community has achieved a victory, it is important to continue working towards our ultimate goal of creating fair and inclusive disability questions.

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