In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.
Many disabled people are not included in official U.S. data. This is because there is “No Box to Check” to indicate their particular disability on surveys from the U.S. Census Bureau and other federal agencies. The questions used to identify people with disabilities are missing millions.
Two question sets are most often used to assess disability in U.S. federal surveys: the American Community Survey Six (ACS-6) or the Washington Group Short Set (WG-SS). Combined, they are used in at least 17 U.S. federal surveys, so these disability question sets have an enormous effect on people’s lives. For instance, they appear in the Census Bureau’s surveys, which provide information that “generates data that help inform how trillions of dollars in federal funds are distributed each year.” They are also used in surveys fielded by the Centers for Disease Control and Prevention that help monitor health and health care in the U.S. population.
In both sets, questions focus on respondents’ limitations on specific tasks or activities, such as difficulty seeing even while wearing glasses.
Because of this approach, both sets miss large groups of disabled people. They miss between 23% and 59% of people with mental health or psychiatric disabilities, between 13% and 33% of people with intellectual and developmental disabilities, and between 32% and 53% of people with chronic health conditions, such as long Covid.
We recently led efforts to push back against a proposal for the U.S. Census Bureau to change how disability is measured in the ACS. Had it been enacted, the Census Bureau would have changed from using the ACS-6 questions to the WG-SS questions to measure disability in the American Community Survey. This proposed change to the WG-SS questions would have underestimated the prevalence of disability in America by over 40%. Advocacy efforts from the disability community successfully halted this change. But this issue is far from being resolved.
We have been frequently asked which set of disability questions, the ACS-6 or WG-SS, is best. Which set should be used? These questions echo a long debate among researchers, advocates, and the federal statistical community about which of these measures are superior. The honest answer is that both are bad options. Both exclude many disabled people. The federal government must invest in providing something better.
The first step in moving disability measurement forward is recognizing that defining disability solely by someone’s functioning is inadequate. While measures of functioning are important to understand the limitations certain disabled people experience and could identify disabled people who may benefit from specific programs or benefits, these surveys still fail to capture many disabled people. Using this data to determine national estimates of disability is akin to using data on languages used in the home to determine the national race and ethnicity estimates.
Second, disability must be viewed as a demographic variable. As such, it should be collected everywhere we collect other demographics such as age, gender, and race-ethnicity.
