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Advocates tell committee: fund IDD waiver wait list after Perry Spencer's death
Summary
Witnesses and self-advocates urged Kansas lawmakers to move beyond numbers and fund waiver slots after testimony that connected the IDD waiver wait list to serious harm, including the recent death of self-advocate Perry Spencer.
Whit Downing, vice president of policy and programming for the Kansas Council on Developmental Disabilities, testified that the IDD waiver wait list is a human crisis and asked lawmakers to treat it as such rather than a budget line item. "Please carry Perry out of this room today," Downing told the Joint Committee, asking members to remember the person behind the statistics.
Downing described how Perry Spencer, a governor-appointed self-advocate who had earlier testified to the committee, used an AAC device to tell his story and "believed his voice mattered." Perry's brief remarks were recorded in the hearing: "you're gonna think I'm sounding dramatic, but people die," a line read during his testimony. Downing said Perry, who had been on a wait list, died weeks later at 22 years old and urged the committee to act to honor him.
Lola Cornell, an advocacy coordinator with KCDD and an IDD waiver recipient, told the committee the waiting list now holds 5,348 people while a legislative cap is 4,000. "We need to fund the waiver slots," she said, and asked for clear policy on how people move from the Community Supports Waiver (CSW) to the comprehensive waiver when their needs change.
KDADS staff and committee members acknowledged the urgency. KDADS is preparing to launch the CSW on Oct. 1 and is tracking offer rounds and crisis exceptions, but committee members pressed agencies for faster, clearer pathways to convert appropriations into active slots. Lawmakers asked KDADS and KDHE for more detailed, timely data on who can be removed from waiting lists and how quickly authorization and enrollment steps can be completed.
The committee did not adopt any new appropriation during the session recorded in the transcript; members flagged follow-up with KDADS and KDHE and promised to revisit the item once agencies provide detailed timelines and the data requested by the panel.
