Using all-payer claims data for health surveillance of people with intellectual and developmental disabilities.

Amaral et al. (2019) added special ICD-9 codes for developmental disability to the old CMS algorithm.

They ran the new code set on all-payer insurance claims in one state.

Goal: catch every person with IDD, not just the ones on Medicaid.

The wider code list pulled in more people with IDD than Medicaid files alone.

States now have a fuller picture of health service use across public and private payers.

Anderson et al. (2019) warned that U.S. prevalence numbers swing wildly—from 11 to 69 per 1,000—because each study uses different rules. G et al. answer that call by giving one clear rule set any state can copy.

McKenzie et al. (2017) mined open-text notes in home-care files and also found extra IDD cases, but messy wording led to false hits. G et al. avoid that noise by sticking to billed ICD codes, a faster, cleaner route for big data.

Together the three papers show a path: start with G et al.’s ICD algorithm for a state-wide count, then drill down with Katherine’s text search or Lahti’s review if you need finer detail.

You can share this ICD list with your state epidemiology team. In one run they can spot where adults with IDD are under-served, then target clinics, training, or waiver slots. No new data collection, just smarter coding.