Identifying People With Intellectual and Developmental Disabilities in National Population Surveys.
Six short survey items now exist to count adults with IDD and their health gaps across the nation.
01Research in Context
What this study did
A federal team wrote a how-to guide. They picked short questions that can spot adults with intellectual or developmental disabilities in big national health surveys.
The guide tells survey writers exactly what to ask and how to ask it. The goal is to finally count how many adults have IDD and see what health care they miss.
What they found
The team produced a ready-to-use set of screener items. If surveys add these items, we can track IDD prevalence and unmet health needs across the whole country.
How this fits with other research
Krahn (2019) made the same plea in the same year. That paper shouted "we need better data"; Dudley et al. (2019) hands over the actual questions.
Hastings et al. (2002) ran an early large survey and saw heart risks missed in adults with ID. The new items would catch those gaps nationwide.
Magaña et al. (2016) showed Black and Latino adults with IDD have worse health than White peers. The new survey items include race codes so disparities can be tracked every year.
Chiviacowsky et al. (2013) found adults with ID in rural areas land in the hospital for problems primary care could prevent. The proposed items flag rural IDD status so policy teams can watch those hospital rates.
Why it matters
You can copy the screener into any large intake or state survey you help design. Adding the six quick items gives numbers you can take to legislators or funders to show unmet needs, spot inequities, and justify new clinics or staff. No extra clinic time, just sharper data.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Paste the screener into your agency’s intake form and start flagging new clients as IDD for state reports.
02At a glance
03Original abstract
Public health and policy planning for adults with intellectual and developmental disabilities (IDD) is imperiled by the lack of ongoing national surveillance data on prevalence and health status. In 2018, the Administration on Intellectual and Developmental Disabilities appointed a workgroup of representatives from key federal agencies and national experts to recommend strategies to improve prevalence estimates and health surveillance for people with IDD. This article presents the workgroup findings on the availability of prevalence and health surveillance data for adults with IDD and suggested items that could identify respondents with IDD on national surveys with special attention to modifications in the National Health Interview Survey. We identify core constructs that must be measured to identify sample members with IDD in population surveys, and additional constructs which, if measured, would support more comprehensive identification of sample members and enhance ongoing surveillance of the health status, outcomes, and unmet needs of this population. We conclude with a brief review of methodological considerations to improve IDD national surveillance including cultural and linguistic sensitivity and the inclusion of U.S. territories in national surveillance protocols.
Intellectual and developmental disabilities, 2019 · doi:10.1352/1934-9556-57.5.376