Using Medicaid Data to Characterize Persons With Intellectual and Developmental Disabilities in Five U.S. States.

The team pulled five state Medicaid files. They hunted for any sign of intellectual or developmental disability.

No treatment was tested. The goal was simply to see how many people the claims could catch and to describe them.

The search netted over 300,000 members with IDD. The study shows billing codes can flag huge groups for planners.

de Leeuw et al. (2024) looked at the same Medicaid pool but counted heart disease. They found scary-high rates, proving the 2018 head-count was not just paperwork—it points to real medical need.

Faught et al. (2021) used a similar claims trick in New Hampshire. They showed people with IDD land in the hospital for problems primary care could have stopped. Together the three papers draw a straight line: find them, then fix care.

Wilson et al. (2020) went one step further. They took a Medicaid IDD group like Suzanne’s and tested a care-coordination program. Blood pressure and cholesterol diagnoses improved, showing the data can drive action, not just description.

You now have proof that routine billing codes give you a ready-made caseload list. Share the count with health-plan partners to justify chronic-disease clinics, nurse care managers, or prevention budgets. The numbers are already in the system—use them.