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KU study finds long IDD wait lists, health decline while waiting; recommends data portals and employment supports
Summary
Researchers from the University of Kansas presented a study to the committee showing thousands on Kansas waiting lists, evidence of declining health while waiting, and recommendations that include public-facing wait-list dashboards, improved data systems and strengthened employment supports.
Evan Dean, associate director at the University of Kansas Center on Developmental Disabilities (KUCD), summarized a KU-led study of Kansas Medicaid waiting lists for intellectual/developmental disabilities (IDD) and physical disabilities. The study analyzed administrative data and conducted accessible surveys of people on the wait list and caregivers.
Dean said the KU study began in October 2022 and analyzed administrative records through January 2024. At that time, the IDD waiting list in Kansas had grown to about 5,240 and the physical‑disabilities (PD) waiting list about 2,200; KDADS legislative actions since then have reduced the wait-list totals. Dean told the committee the KU team used Medicaid claims, crisis-exception tracking and an accessible survey developed with the Self…
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