Unlocking the Potential of State Level Data: Opportunities to Monitor Health and Related Outcomes in People With Intellectual and Developmental Disabilities.
State IDD datasets are rich but unusable for national tracking until states share the same labels and close health-topic gaps.
01Research in Context
What this study did
Bonardi et al. (2019) looked at every state-level data source that tracks health for people with intellectual or developmental disabilities. They read reports, called agencies, and mapped what each state collects.
The team wanted to know if these big files could act like a national health monitor. They did not run new numbers; they stitched together what already exists.
What they found
The files are a mess. Each state uses different labels, different codes, and different rules. Because of that, you cannot line up one state next to another to see who is healthy and who is not.
The authors say the data could be powerful, but only after states agree on the same definitions and fill big gaps, like mental-health tracking.
How this fits with other research
Leezenbaum et al. (2019) extend this idea by adding tech streams. They show you can fold in Medicaid claims, Fitbit-style wearables, and telehealth notes on top of the state files Alexandra reviewed.
Cantwell et al. (2014) already proved one state file can work. They checked Massachusetts disability records against real cancer-screening charts and found good accuracy, but only for adults in 24-hour care.
Robertson et al. (2013) warn that even within one state, the code you pick to flag "IDD" changes the count. Their work underlines the harmonization plea Alexandra makes.
Why it matters
If you write grants, sit on state councils, or plan clinic budgets, this paper is your roadmap. It shows exactly why your waiver data look different from the next state's and why you cannot compare outcomes yet. Push for common data dictionaries and you turn scattered reports into a surveillance system that spots health problems early.
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02At a glance
03Original abstract
No single U.S. health surveillance system adequately describes the health of people with intellectual and developmental disabilities (IDD). Researchers and policy makers have sought to understand the potential of state and local administrative and survey data to produce a local as well as a national picture of the health of the population with IDD. Analyses of these secondary data sources have significant appeal because of the potential to derive new information without the burden and expense of new data collection. The authors examined the potential for data collected by states and territories to inform health surveillance in the population with IDD, including data from the administration of eligibility-based supports, health insurance claims, and surveys administered for monitoring and quality improvement. Although there are opportunities to align and harmonize datasets to enhance the available information, there is no simple path to use state and local data to assess and report on the health of the population with IDD. Recommendations for policy, practice, and research include the development and use of consistent operational definitions in data collection, and research to fill knowledge gaps.
Intellectual and developmental disabilities, 2019 · doi:10.1352/1934-9556-57.5.390