Summary
This blog reviews the proposed change in the US census questions concerning disability.
The US Census Bureau announced a proposed change to how it identifies people with disabilities in its data collection, switching from the existing six disability questions in the American Community Survey (ACS) to the Washington Group Short Set (WG-SS) of six questions. This has caused concern in the US disability community, but I believe it would be a significant improvement in US data.
Both sets of questions take the same basic approach in that they ask about difficulties in doing basic activities. That is, they identify people who have functional limitations that put them at risk of exclusion when faced with barriers in the environment. This approach identifies more people than asking about “disability” which tends to identify very few people for several reasons : (1) stigma, (2) belief that disability is only something that is very severe, and (3) old people often contribute their difficulties to age, and do not see it as disability.
The main difference between the ACS and WG-SS questions is that the ACS response categories are yes/no and the WG-SS questions’ response categories are:
- No, no difficulty
- Yes, some difficulty
- Yes, a lot of difficulty
- Cannot do at all
Many disability advocates are concerned because the disability prevalence rate using the ACS is about twice as high as the prevalence rate when the WG-SS questions are used with a cut-off of “a lot of difficulty.” That is, a person is identified as having a disability if they answer “a lot of difficulty” or “cannot do at all” to any one of the six questions (on hearing, seeing, mobility, cognition, communication, and self-care). That is true. However, the WG-SS actually identifies MORE people as having a disability if we include people answering “some difficulty” to more than one question. And this includes mainly of the people identified by the ACS questions. Fortunately, the Census Bureau has agreed that it will release that information so using this cutoff point will yield a higher prevalence rate.
Moreover, the scaled responses allow us to better understand how exclusion plays out in the population. In the National Health Interview Survey, those working aged people answering “a lot of difficulty” or “cannot do at all” had a 14% employment rate. Those answering “some” to more than one question had a 40% employment rate. Now, 40% is still way lower than the 70 plus percent employment rate of people without any difficulties, but there is still an important difference. Using the ACS questions – which lumps these two groups together – would hide the even more extreme exclusion faced by people with the largest functional difficulties.
Another concern of advocates is that people with disabilities were not consulted in the development of the WG-SS. This is only partially true. People with disabilities were widely and continuously consulted and even involved in some of the testing of the questions . That is one reason the International Disability Alliance has endorsed them. As the WG is an international organization created by the UN Statistical Division, and that testing was done by organizations of people with disabilities around the world. What is true is that there was no involvement by US disability groups, which was unfortunate. However, the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) was at the first meeting.
Some people fear that a lowered measured prevalence rate will affect funding and policies. That is very understandable. As often stated, what is not measured is ignored. However, using the cutoff mentioned above, MORE people will be identified. In fact, if we used the cutoff of answering “some difficulty” to only one question, then over 30 percent of the population would be identified (and FYI, according to the NHIS they have a 60% employment rate, still less than the over 70% rate of people with no difficulties). Second, this data has no bearing on the eligibility conditions for disability benefits or suits brought under the Americans with Disabilities Act. What the data is used for is to better understand the situation of people with disabilities in the population. The WG-SS has advantages in that it can give us a more detailed, nuanced look at the relationship between functional difficulties and people’s ability to participate in the social and economic lives of their community.
Another issue people bring up is that the WG-SS does not capture ALL people with disabilities (nor do the ACS questions). To what extent does that matter for the purposes of the ACS? It depends on the purpose of the data collection and how it used – and how it shouldn’t be misused. Check out this blog. https://www.washingtongroup-disability.com/wg-blog/does-the-wg-ss-identify-all-people-with-disabilities-and-does-it-matter-70/
Daniel Mont is the CEO of the Center for Inclusive Policy, and has worked with the Washington Group since 2003, initially as the World Bank’s liaison to the group. He was the chair of the analytical working group that oversaw the testing of the questions and has advised on national disability surveys in many countries. For more info on the testing of the Washington Group Questions, consult the secretariat of the Washington Group at washingtongroup-disability.com
