KU study finds long IDD wait lists, health decline while waiting; recommends data portals and 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 Advocacy Coalition of Kansas to document needs.

Key study findings presented to the committee included: - The majority of people on IDD waiting lists were under age 21 in the administrative snapshot KU analyzed. Many younger people may qualify for Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefits through Medicaid that provide health and medical services while they await waiver slots. - Crisis exceptions and priority populations were most often granted for caregiver needs (aging caregivers, caregiver death) and for significant behavioral supports, abuse/neglect/exploitation and criminal-justice involvement. People frequently fit into multiple categories. - Survey results indicated that most respondents preferred living alone, with a partner or in an apartment with roommates rather than institutional or disability-only housing. Respondents reported higher-than-expected support needs in areas such as daily assistance and community supports. - Claims analysis suggested people on waiting lists had poorer health and became sicker while waiting; KU described this as a cost and quality concern because later entry into services often increases service intensity and cost.

Dean also described a KU partnership with KDADS and community providers to build competitive integrated employment capacity. A pilot that paired Kansas providers with national mentors saw 176 individuals obtain jobs with an average wage above $13 per hour and many working more than 20 hours per week. Dean and KU recommend investments in data systems (secure family portals and public dashboards), individual budget authority in the CSW, better transition planning for youth leaving school, and robust employment services as part of a comprehensive strategy to reduce waiting lists and improve outcomes.

Committee members asked for more granular analysis of costs associated with delayed care. Dean said KU could explore whether earlier access reduces later acute care costs but would need more data and time to calculate dollar estimates. Several legislators urged KDADS and KU to pursue a public-facing portal so families can confirm a person’s position on the statewide waiting list and keep contact information current.

No formal committee actions were taken during the presentation; KU researchers said the study’s final report and data appendices were available to committee staff and stakeholders.