Despite diverting $24 million earmarked for individuals with developmental disabilities to the frail and elderly waiver program, KSN reports that the waiver waitlist has grown past 400.
Department of Children and Families Secretary Laura Howard — who is also in charge of KDADS — said in a release in August that during the most recent legislative session, KDADS diverted the $24 million the IDD appropriation and [Physical Disability] waiver savings “to avoid creating waiting lists for other HCBS waivers, including the Frail Elderly (FE) and Brain Injury (BI) waivers.”
Yet the frail and elderly waitlist has grown, and the IDD waiver waitlist has ballooned past the 4,000-person cap set by the legislature to more than 5,000.
Sara Hart Weir Rogers, the executive director of the Kansas Council on Developmental Disabilities, a federally funded independent state agency, said that while the FE waiver waitlist should be taken seriously, the enormity of the IDD waiver waitlist is not being addressed.
“Every waiver waitlist should be treated with urgency because behind every number is a Kansan who needs services and a family waiting for help,” she said in an email statement. “That is especially true for the IDD waiver, where 5,400 Kansans are waiting, and some families have faced waits approaching a decade. We absolutely need to address the growing Frail Elderly waitlist, but we cannot lose sight of the longstanding crisis facing Kansans with intellectual and developmental disabilities.
“The Legislature has directed KDADS to reduce the IDD waitlist to no more than 4,000 people, and we are still waiting for the agency to meet that requirement. Kansas must make eliminating these waitlists a priority — not simply managing them.”
IDD waitlist times stretch beyond a decade for some residents
One family has had their daughter on the IDD waitlist for nearly three decades.
Patti Garbeff’s daughter Pattie is now in her 40s — her mother is in her 80s — and while very independent, will need to have services to remain so in the years to come.
Garbeff said she signed Pattie — who has Down Syndrome — up for the waiver when she was 13 years old, but it would appear Pattie’s case manager at the time didn’t follow through.
Garbeff said that when she got a new case manager for her daughter, the ball finally started rolling. Moreover, there was still a struggle to get Pattie services because she, Garbeff said, is “healthy.”
“We have been on the wait list that long, and I think the policymakers could do a better job of helping people,” Garbeff said.
Or take the example of Michelle Lockwood and her son Trey, 33. Trey is autistic, having been diagnosed at age 5.
With three other children and a husband deployed overseas, the situation with Trey became very difficult, forcing Lockwood to make a tough decision.
“Trey had been on the waiting list for a while, and finally, somebody told me, ‘you have to get him on because you need help. You know, you’ve got a parent gone in a war zone. You need help. So this is what you do. You tell the state of Kansas,’ — and this is horrible. I admit it — ‘that you don’t want your child with a disability anymore. That makes them panic. They don’t have room in the foster system, especially for someone with special needs. They will get you help.’ And I said, ‘but I’m afraid that they’ll take me up on it and take my kid.’ And they said, ‘no, that never happens. You have to trust us. There’s a crisis list.’ So that’s how Trey got on. The waiting list for Trey was over 10 years at the time.”
These are the decisions the waitlist times are forcing parents to make daily in Kansas.
IDD waiver waitlist could be reduced to zero in 5 years, according to Rogers
Rogers said the waitlist is long for many reasons, but much of it comes down to two factors — a failure of leadership and outdated technology.
According to Rogers, the forms to even get on the waitlist have to be filled out by hand, and then the data entered into a spreadsheet.
An IDD program is called a “waiver” because federal Medicaid rules “waive” traditional institutional requirements so funds can pay for home and community-based services instead.
70% or more of residents on the IDD waitlist are already on Medicaid, and much of the information needed to qualify someone for the IDD waiver is held by the Kansas Department of Health and Environment.
But according to Rogers, KDADS and KDHE can’t share that information across agencies.
KCDD has a plan to eliminate the IDD waitlist
Rogers says KCDD has put forth a six-point, five-year plan to reduce the waitlist to zero:
- Put One Leader and One Number in Charge — The Governor should appoint a full-time KDADS Secretary (as the Waitlist Elimination Czar for Kansas) with authority across KDADS, KDHE, KanCare, CDDOs, and contracted technology vendors.
- Turn Wait Time into Preparation Time: Build a Ready-to-Serve System — Kansas should prepare people for enrollment before a funded slot opens. The system should distinguish permanent program facts from time-sensitive Medicaid and service facts: preserve verified I/DD program eligibility absent evidence of error, while updating functional need, financial eligibility, contact information, and service preferences on the lawful schedule.
- Replace the spreadsheet with two-way waitlist technology (From Spreadsheets to Smart Systems — Bring Waitlist Management into the 21st Century)
- Build a Bridge, Not a Barrier: Connect CSW and the I/DD Waiver — The CSW is a major opportunity, but current guidance creates a false choice: accept earlier support and surrender I/DD priority, or decline help to preserve a future comprehensive pathway. Kansas should seek any state-plan, waiver, or CMS authority needed to end that penalty.
- Run the Waivers Like Lives Depend on Them — Business discipline does not mean treating people like inventory. It means treating time, money, capacity, and accountability as scarce resources that must be managed every day.
- Bring Business Discipline to the System — The Legislature should require KDADS to submit a five-year elimination plan with refreshed annual costs and should fund the plan through a consensus-caseload-style process. A one-time appropriation is not a plan; a statutory cap without an enrollment schedule is not implementation.