The proposals to whittle down a 10-year waitlist for Kansans with intellectual disabilities

Gov. Laura Kelly’s proposal would remove 500 people off various waitlists for families caring for people with intellectual or developmental disabilities. Republican lawmakers say their plan would whittle down the wait faster.

by Blaise Mesa

Caring for a child with an intellectual or developmental disability is a 24/7 responsibility for parents. 

A child with autism, for example, can be easily frustrated by minor changes, can hyperfixate on things and can feel particularly dependent on certain routines. That can overwhelm already stressed and worn-down parents. 

Kansas has money to help such families with overnight respite care, wellness monitoring and other in-home services. But families wait an average of 10 years to qualify. That’s so long that kids have aged out of support before ever getting it

The state is trying to reduce the wait times for families to receive the waivers that provide these services. Gov. Laura Kelly added $23 million to her budget proposal to create 500 more slots on the intellectual/developmental disability waiver and the physical disability waiver. 

“Kansans with disabilities,” Kelly said in a statement, “need the essential services and care provided by these waivers to live comfortably.” 

Kelly’s proposed $23 million has $8.8 million in Kansas taxpayer dollars and $14.1 million in other revenue sources to increase enrollment slots. The Republican plan has a $33.9 million price tag, with $13.6 million in Kansas dollars and $20.3 million in other revenue to physicians to increase rates for services. It also includes $17.9 million in general funds and $27.3 million to increase outpatient hospital rates. 

Kelly estimates her plan will add 250 slots to the I/DD waiver and 250 slots to the physical disability waiver. Republicans said their plan will help twice as many people as Kelly’s — yet both proposals don’t go far enough for some advocates.

“The state has been starving the waiting list, and that’s why it’s skyrocketing at this point,” said Rocky Nichols, executive director of the Disability Rights Center of Kansas. 

The physical disability waiver had no waitlist in 2007. It peaked at 2,771 people in 2010 before dropping to 822 in 2016. The wait has almost tripled since then. The I/DD waitlist has had 2,000 or more people waiting since 2009. 

It’s common for both waivers to get hundreds more applications each year, which means adding 250 extra spots may not even keep up with demand. 

“We’re not talking about going to the doctor because you have the sniffles or you broke a finger,” Nichols said. “We’re talking about in-home support to come in and accommodate your disability and help you with activities of daily living.” 

Since 2017, the Legislature has approved less than $10 million overall for both the physical disability and I/DD waivers. However, it’s spent more than $200 million to adjust rates for those services since 2020. 

That’s where one divide comes in: Nichols said helping providers earn more doesn’t get people off the waitlist, but state lawmakers say they needed to start there to stabilize staffing and pay. 

“You can talk all day long about taking folks off the waitlist,” said Rep. Will Carpenter, an El Dorado Republican. “But if they can’t access services, you’ve done nothing.” 

Carpenter is pushing hard to double Kelly’s proposal and he sees legislative support behind him. He wants to get people off the waitlist, especially since a proposed solution to the waitlist is still years away. 

Kansas is trying to create a community support waiver. It first needs federal permission, something likely to take years. 

That proposed community support program wouldn’t replace the I/DD waiver. Instead it’s going to supplement it and offer families waiting for help a chance to get it earlier. It doesn’t offer the most intensive services, but not everyone needs those. 

Carpenter hopes it will remove half the people from the current waitlist. He’s currently taking a “wait and see” approach to the new waiver because it could be more effective than some think it can be.

Families know how bad the waitlist is and they know they won’t get help if they apply for it when they need it. That leads to some families applying to the waitlist early before they need support, Carpenter said. He estimates there could be around 1,000 families on the waitlist now that don’t need help yet. 

That’s only a guess, Carpenter said, and the University of Kansas is studying the needs of waitlist families to see if his hunch is correct.

“I don’t spend money without having a reason,” he said. “We don’t know what we need to do at this point in time.” 

Carpenter said he knows people are frustrated by the wait, but he said the state is trying to help. His main goal is getting people off the waitlist. 

“Let’s give the community support waiver a chance and see how many people we take off the waitlist with that,” he said. Then “we’ll deal with what we have left.”

This article was republished here with the permission of: The Wichita Beacon