As The Sentinel recently reported, there are more than 5,000 Kansans with intellectual or developmental disabilities (IDD) sitting on a waiting list that can take as much as a decade to open up.
Indeed, the Kansas Department of Aging and Disability Services, or “KDADS,” spent $24 million earmarked by the Legislature for services for Kansans with intellectual or developmental disabilities on other programs, despite the fact that the Kansas Legislature set a cap of 4,000 individuals on the IDD Home and Community Based Services waitlist. The current count is 5,348.
Sarah Hart Weir, Executive Director of the Kansas Council on Developmental Disabilities, said the waitlist is long for many reasons, but much of it comes down to two factors — a failure of leadership and outdated technology.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 Weir, the forms to even get on the waitlist have to be filled out by hand, and then the data entered into a spreadsheet. Moreover, the KDADS Secretary, Laura Howard, is also Secretary of the Department of Children and Families.
Weir took particular issue with that double role.
“I think the … issue has been that we’ve had a secretary overseeing two different departments that deal with important social service programs, safety net programs,” Weir said in a phone interview. “Individuals that are living in poverty and individuals with disabilities who need services across their lifespan, and I think that’s been part of the challenge. The IDD waiver as a whole and the IDD waiver waitlist have not gotten the attention that [they] deserve.”
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 Weir, KDADS and KDHE can’t share that information across agencies.
“Unfortunately, the way our state government, our state bureaucracy approach it here in Kansas is that every system is siloed, and we make it so complicated for the individual to navigate, when we should be having just one door in Kansas, one state agency that says, ‘Hey, we are going to make this easy for you,'” Weir said. “We need to make the system work for the individual and not force families to navigate this bureaucracy. And we need to run it like a business. And unfortunately, we don’t in this state.”
In 2022, KDADS spent nearly $1 million contracting with the University of Kansas to study how to reduce the waitlist. That study took two years and identified many of the same issues Weir addressed.
“Unfortunately, much is unknown about the individuals on the waiting list for both waivers. While KDADS can track their basic information (e.g., age, address), there is not a process established to gather information about current needs or anticipated needs,” the report reads. “Further, a significant number of people are moving off the waiting list because of a crisis, through the KDADS crisis and exception policies. Experiencing a crisis as the mechanism for accessing services is not an ideal situation for the individual served or their families. Additionally, crisis enrollment makes it difficult for Community Developmental Disability Organizations (CDDOs) and service provider organizations to plan for effective support.”
Among other things, KU found that Kansas needs a ” transparent, secure, integrated, and interoperable data system for HCBS system and waiting list management.”
KU and Weir both stressed the need for a public-facing system that would allow those on the waitlist to both keep KDADS informed of their current situation and track their place on the list.
However, none of these recommendations — and many others — have been followed.
Lack of leadership
Spending $1 million on a study and ignoring its recommendations underscores Weir’s comment about the lack of leadership.
Moreover, according to Weir, KDADS is statutorily required, if the waitlist is going to exceed 4,000, to come to the legislature with a “blueprint” for how to reduce the list and how much money will be needed.
“To my knowledge, KDADS has not come back to the legislature and said, ‘Here is the blueprint. This is exactly what we need to reduce the slots under the $4,000 cap,’ which is the law of the land,” Weir said. “We’ve raised this in federal committees. We’ve raised this with KDADS. We’ve raised it with the legislature, and as advocates, you know, we’re sitting here asking, you know, why hasn’t KDADS come back and followed the law that the legislature put in place two years ago?”
The Centers for Medicare and Medicaid Services recently approved a new “Community Support Waiver” taking effect on October 1, which Weir called “waiver-lite.” The CSW waiver is designed to get a lower level of services to people on the IDD waitlist, and is intended to be a “bridge” to eventually get the full “comprehensive” waiver. However, there is concern that someone approved for the CSW waiver would then lose their place in line.
KCDD has a plan to eliminate the IDD waitlist
Weir 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.
