A Call for Better Data on Prevalence and Health Surveillance of People With Intellectual and Developmental Disabilities.
We need routine IDD tracking in health surveys before we can close serious care gaps.
01Research in Context
What this study did
Krahn (2019) wrote a position paper. It says we lack good numbers on the health of people with intellectual and developmental disabilities (IDD).
Without solid data we cannot spot illness early or plan services. The author urges agencies to build better tracking systems.
What they found
The paper finds a gap, not a number. It shows that current health surveys miss most adults with IDD.
Because these people are invisible in the data, their preventable health problems keep getting worse.
How this fits with other research
Dudley et al. (2019) answered the call. That team gave survey writers a short set of IDD screener questions ready to paste into national polls.
Magaña et al. (2016) and Whitehouse et al. (2014) already used smaller surveys to show Black and Latino adults with IDD get sicker and see doctors less. Their numbers prove the surveillance gap is real.
Hatton et al. (2004) pooled older studies and found higher rates of epilepsy, skin disorders and fractures in people with ID. The target paper says we need fresh, ongoing counts like these.
Why it matters
You cannot fix what you do not measure. Ask your agency to add the new IDD screener items to intake forms. One extra checkbox can link local data to national trends and finally show where clinics, dentists and behavior supports are missing.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add the five-question IDD screener to your intake packet and flag any client who reports a developmental disability for annual health reviews.
02At a glance
03Original abstract
The U.S. approach to the health of people with intellectual and developmental disabilities (IDD) is fraught with paradox. The health of this population has been of longstanding concern, yet we understand their health less well than many other groups. The U.S. spends much more per person on the well-being of people with IDD compared to the general population, yet the outcomes of those expenditures are disappointing and include significant preventable health disparities. Even as expectations for people with IDD have changed to include better health and greater participation in their communities, eligibility for services that support these outcomes is rooted in expectations of dependence and poverty. This article is a call for better data that considers a series of questions to provide context for understanding the need and directions for better health surveillance of people with IDD.
Intellectual and developmental disabilities, 2019 · doi:10.1352/1934-9556-57.5.357