Kansas advocacy organizations offer strategy for curtailing waitlist for disability services

Plan targets yearslong wait for people with intellectual, developmental disabilities

By: Tim Carpenter – February 4, 2025 11:08 am

TOPEKA — Whit Downing struggled through eight years on Kansas’ waiting list in hope of receiving essential Medicaid services she qualified for by virtue of autism and mental health challenges.

Downing has taken her firsthand experiences to work as vice president of policy and programming at the Kansas Council on Developmental Disabilities, which provides advocacy, leadership development and education for people of all ages with developmental disabilities.

She has publicly shared her story of psychiatric hospitals stays, survival of a suicide attempt and the emotional draining of her family.

Part of her story has been about gaining full-time employment and stepping away from government benefits she was no longer qualified to receive. On Downing’s 29th birthday, she received a letter that said her years on Kansas’ waiting list were over. A spot had opened up for her. She was able to decline the slot so it could be taken by another on the list.

At the Capitol, Downing appealed to members of the Kansas House to keep allocating resources to guarantee more Medicaid service-delivery slots for people such as herself with intellectual or developmental disabilities or IDD.

In the upcoming year, she said, the state’s goal should be to shrink the 4,320-person IDD waitlist by another 500. A bipartisan coalition of legislators took the first step with a 500-person reduction in 2024. Continuation of progress would allow the state’s cap on the IDD waitlist to fall to 3,800.

“While I now consider myself fortunate to have a fulfilling and accommodating career at the council, the years that I spent on that waitlist were some of the hardest of my life,” Downing said. “Funding for waiver services does not just improve lives, it saves them. I’m here to advocate for change. The waitlist is far too long and the consequences of waiting are devastating.”

Reform pitch

The House Social Services Budget Committee has been gathering testimony on a wide range of reform options for Kansans with disabilities. That included a four-year plan endorsed by the Kansas Council on Developmental Disabilities and the Disability Rights Center of Kansas to invest $13.6 million for the second addition of 500 IDD program slots.

That change would be coupled with allocation of $250,000 to help the Kansas Department for Aging and Disability Services implement a better system for tracking people on the waiting list.

Supporters of this earmark believe KDADS should have a firm grasp on who was on the list as well as when and what services they would eventually seek. This dashboard would allow applicants to check their status on the waitlist and update anticipated service needs and contact information.

“The state has unfortunately made minimal investments in modernizing the technology used to manage the IDD waitlist,” said Sara Hart Weir, executive director of Kansas Council on Developmental Disabilities.

At one point, the IDD waitlist in Kansas was estimated to be 11 years long. That reality incentivized parents and guardians to place children on the list years before needing services required by adults. This exaggerated, in a sense, the IDD numerical backlog in Kansas.

Hart Weir said the final piece of the three-part strategy would be for Kansas to gain federal government approval of an overhaul to community-support programs, such as shelter workshops, designed to build job skills among IDD enrollees.

So far, Kansas hasn’t committed to move away from what evolved into the segregated, near-permanent placement of disabled individuals in workshops. The Kansas approach hasn’t satisfied federal mandates to focus Medicaid dollars on transitioning IDD participants to competitive, integrated employment opportunities in the community.

Under this plank of the reform strategy presented to the Kansas House committee, the state would invest about $1 million to qualify for the new community support waiver so 500 IDD individuals could enroll in 2026. The idea would be for this community support system to accommodate up to 1,500 individuals in three years.

“It’s 2025. We need to move away from segregation,” Hart Weir said. “We need to modernize the system.”

Solving the puzzle

Rocky Nichols, executive director of the Disability Rights Center of Kansas, said the broader objective was to convince the Legislature and KDADS to collaborate on driving the IDD waiting list from 4,300 to zero in 2029.

He said a key to the plan was recognition that only 2,500 of 4,300 individuals on the IDD waitlist would need expanded Medicaid services within this four-year reform period. The estimate of the four-year need in Kansas was drawn from a study conducted by the University of Kansas Center on Disabilities with assistance from KDADS.

“Nearly 50% of the waitlist are ages 5 to 17,” Nichols said. “And many of those, not all, but many of those won’t need services for several years.”

For example, a 10-year-old child wouldn’t need some IDD services until graduation from high school or upon reaching the age of 22.

Nichols said that knowledge would allow the Legislature and governor to focus during the next couple years on placing 1,500 into revamped and federally approved community support programs and adding at least 1,000 slots within the framework of IDD services.

He said Republicans and Democrats in the Legislature expressed support for the three-part plan for handling the IDD waitlist. The drive to zero, once achieved, would necessitate ongoing state and federal government investment in people requiring IDD services so the waiting list wasn’t born again, he said.

This article was originally published by The Kansas Reflector.