In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.
If given final approval, the changes to the American Community Survey questions would be implemented in 2025. The ACS is the most comprehensive survey of American life, covering commuting times, internet access, family life, income, education levels, disabilities and military service, among other topics. The statistical agency was asked to make the change by the National Center for Health Statistics and is accepting public comment on the proposal through Dec. 19.
The existing questions ask respondents to answer “yes” or “no” if they have difficulty or “serious difficulty” seeing, even with glasses, or are blind; hearing, or are deaf; concentrating, remembering or making decisions because of a physical, mental or emotional condition; walking or climbing stairs; dressing or bathing; or performing everyday tasks because of a physical, mental or emotional condition. If the answer is ''yes,” they are counted as having a disability.
Under the proposed change, 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.” There are tweaks to the language of the questions, and the proposal adds a query on whether respondents have trouble communicating.
But the most significant change involves the threshold beyond which people are determined to have a disability. The international standards being considered by the Census Bureau typically define a person as having a disability if they answer “cannot do at all” or “a lot of difficulty” for any task or function.
During testing last year by the Census Bureau, the percentage of respondents who were defined as having a disability went from 13.9% using the current questions to 8.1% under the international standards. When the definition was expanded to also include “some difficulty,” it grew to 31.7%.
Bonnielin Swenor and Scott Landes at STAT:
As disabled people, and as scholars who study disability measurement and use disability data for our research, we have grave concerns about this proposed change. If the Census changes its disability questions it will artificially reduce national estimates of disability almost by half, by the bureau’s own estimate. Any effort to undercount disabled people is alarming as the prevalence of disability is rising, not declining, as a result of the Covid-19 pandemic.
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At a recent public meeting of Census National Advisory Council (NAC) it became clear that the U.S. disabled community was not engaged regarding these changes. This meeting also highlighted the lack of scientific justification for this change, especially considering the Census’ goal of accurately counting demographic groups. During their debriefing session, the NAC members indicated shock that the disability community had not been more involved and recommended against adopting the proposed change to the WG questions prior to or without first consulting with a representative cross section of diverse and intersectional members of the disability community.
