The Census Bureau has proposed revisions to the way it collects data on disability in its American Community Survey (ACS), raising alarm among disability experts who say the changes could drastically undercount the disabled population in the U.S.
The ACS is an annual demographics survey used to collect data about the public between the Census’ decennial studies. The survey data, collected by the Census, has an impact on funding and research for disabled people in the U.S., which the proposed changes could impact, disability experts say.
The proposed disability revisions, among several other proposed survey changes across various topics, includes a shift from the current set of disability questions, known as the ACS-6, to the Washington Group Short Set (WG-SS), along with a new disability definition and an additional question focused on communication starting in 2025.
The shift from the ACS-6 ― which has been used by the Census for over a decade ― to WG-SS and the addition of a communication question was first proposed in 2018 by the National Center on Health Statistics (NCHS), an agency within the Centers for Disease Control and Prevention, after the Census called for federal agencies to submit proposals for new or revised ACS survey questions.
In an email, NCHS statistician Julie D. Weeks said the proposed revision to the survey questions came as a result of increased concerns on the scarcity of high-quality data on disability both in the U.S. and in other countries, as well as calls from the research community to collect information on disability severity.
The ACS-6 is a set of questions respondents are expected to answer “yes” or “no” to whether they struggle with six different functions. By contrast, the WG-SS opts for a graded response scale, in which respondents are asked to rank the level of difficulty of those functions.
Weeks described the switch to WG-SS and the addition of a communication question as a “substantial improvement” to the current set of questions, adding that it provides “more detailed information about levels of difficulty or severity in functional domains.”
The Census tested the newly proposed survey questions last year after it recommended switching to the new questions and also changing the disability definition for the survey. Under the newly proposed definition, only those who respond to the function questions with having “a lot of difficulty” or “cannot do at all” will be considered disabled.
Disability advocates, researchers and community members found out about the changes through a notice on the Federal Register in October, and were immediately concerned about how these changes would undercount their population.
The results of the 2022 test showed that respondents who were defined as having a disability decreased from 14% to 8%, indicating as many as 20 million disabled people could not be counted in the survey.
HuffPost spoke to disability researchers, advocates and experts about the drastic effects these changes would have, especially on research, policymaking, and funding allocation for disabled people in the U.S.
Changing How Disability Is Counted
The ACS-6 questions have been used by the Census since 2008, and are currently used in at least 17 additional national surveys. While the WG-SS is only used by two U.S. surveys, it has been endorsed by the United Nations and other international agencies and organizations as the international standard for collecting disability data in censuses and surveys.
Between 2009 and 2020, 111 countries used the WG-SS in a census or survey, according to the United Nations, while 34 countries said that they intend to use the questions in their census or surveys in 2021 and 2022.
“Adopting the WG-SS as the measure of disability used in the U.S. census … not only provides more detailed information than is currently collected but aligns our data with those collected and reported from other countries,” Weeks explained.
Since the WG-SS questions are commonly used around the world, disability experts predict that being able to compare U.S. disability data to other countries’ data could have been a motivating factor in proposing a switch to those questions.
But while international data comparison can be useful, Kate Gallagher Robbins, senior fellow at the National Partnership for Women and Families, said it should be low priority compared to meeting and serving the needs of disabled people in the U.S., which could be compromised with an undercount of the disability population.
According to the Census website, the ACS disability statistics are used by federal agencies to understand the disability population in the U.S., distribute funds, provide services and develop programs for disabled people.
Disability experts say the adopted changes to the survey could be detrimental for federal agencies that help provide services to disabled people, such as home and community based services, Medicaid enrollment and affordable housing.
“I think there’s a bunch of factors there when we think about how we’re using this data, and what the goals of the survey are, that seem to have not been considered in trying to adopt this set of questions,” Robbins said.
Silvia Yee, senior staff attorney with the Disability Rights Education and Defense Fund, said while the proposed changes could be beneficial for data comparison in an ideal world, it has risks “in a world where you have politicians and governors who are so eager to cut down on programs people with disabilities need to stay in the community.”
Accurate data on the disability population can also assist in determining the needs of disabled people in local communities, experts said.
For example, when COVID-19 vaccines became available in 2021, many older and disabled people struggled to access vaccines because they couldn’t leave their house. Yee recalls how a few counties in the San Francisco Bay Area worked on developing a solution after using data to determine disability prevalence and to understand that there was a need for better vaccine access for these demographics.
“That kind of data is really important. You still need a local advocate who will push for it. But once you have a local advocate, they need something to back them up, especially when it comes to spending money and limited resources,” Yee said. “If you don’t have this data, you are leaving those advocates without ammunition.”
Marissa Ditkowsky, disability economic justice counsel at the National Partnership for Women and Families explained that an undercount of the disability population is “irresponsible,” especially as their numbers rise from the ongoing COVID-19 pandemic.
“To cut the number of counted disabled folks while we are experiencing this market increase in disabled folks is pretty irresponsible, especially when so many long COVID patients are relying on support and services [and] grants that are funded to do research on all of these issues,” Ditkowsky said.
The Proposed Changes Could Alter Future Disability Research And Allocation Of Funds
Both the NCHS and disability researchers recognize that the ACS-6 shouldn’t be held as the golden standard for disability, noting inadequacies in the current set of questions.
But disability researchers and advocates don’t believe that the proposed changes are the solution, and worry about how it could impact future access to resources and certain aspects of disability data collection.
Disability experts pointed out how the language of new questions and the new definition of disability could exclude some disabled people from the count.
For example, one of the new questions asks, “Does this person have difficulty hearing, even if using a hearing aid?” Under the new definition of disability, those who select “some difficulty” would not be counted as disabled. Ditkowsky notes how this language can exclude hard of hearing individuals who can hear well when wearing hearing aids, as well as those with long COVID or chronic conditions whose experiences might not be reflected in the newly proposed questions about functional limitations.
“As we know, even if you use a hearing aid and can hear only with the hearing aid, you are still disabled. You are still considered to be disabled under our laws and our conception of disability,” Ditkowsky said. “So it will literally just be cutting all these people who use hearing aids and can hear better with hearing aids, even if they’re considered disabled under our laws.”
The Census Bureau said in an email the changes to the disability questions, along with the other changes outlined in the Federal Register notice, were recommended as a result of the 2022 test results.
Weeks emphasized that the ACS-6 and WG-SS both measure functional disability, rather than disability identity, and notes that having specific data on functional ability is useful to developing programs and policies.
“The disability community is diverse, not only in terms of specific types of functioning, but also in level of difficulty,” Weeks said. “Programs and policies developed based on disability data require a level of nuance that is not available from a dichotomous yes/no response.”
The Census said it is currently considering how it might be able to release such data if the proposed changes are adopted, and that more information will be provided once a decision is made.
But even if the data is released, disability experts say the official census statistics on the overall number of disabled people will likely hold a larger weight when making policies compared to smaller data points, such as the data for levels of functioning.
While discussing the proposed survey changes in a meeting in November, the Census Bureau’s National Advisory Committee voted against adopting the disability questions without first consulting the disabled community.
The Census has since met with disability community members, researchers and experts to discuss the change, and is accepting comments from the public on the revisions until Dec. 19 before a final decision is made about the proposed changes.
The disability community has advocated against the proposed changes, with advocates informing members of the community about the changes in more simplified language and encouraging them to submit comments to the bureau by the deadline.
