Waitlist for disability services in Kansas have grown exponentially. Will lawmakers fix it?

Karey Padding is already worried about what she’ll do when her 13-year-old son graduates high school.

Her son, Gavin, has cystic fibrosis and autism. He is in special education now and will continue to receive those services until he is 21.

But after that, the future is murky. Padding placed Gavin on a waitlist for expanded Medicaid disability services when he was 10. Three years later, she’s still told that her child won’t receive that help for at least 10 years.

“I kind of can’t help but feel panicky when I think of the future,” Padding said. She worries that Gavin will “graduate to our couch.”

Gavin is one of more than 5,000 Kansans with intellectual or developmental disabilities on a waitlist for supplemental Medicaid services. More than 2,000 Kansans with physical disabilities are also waiting for services.

For years Kansas policymakers have failed to add funding to remove people from the waitlist as it has grown exponentially from below 500 in the early 2000s. That tide changed this year when Kansas lawmakers brought a renewed focus to the waitlist this legislative session.

The push came amid a unified push from disability rights groups across the state and an effort from GOP leadership in the Legislature to frame elimination of the waitlist as an alternative to Democratic Gov. Laura Kelly’s effort to expand Medicaid expansion.

Speaking to reporters earlier this month Kelly agreed that the waitlist deserves attention. But she said Republicans were using it as a distraction from expansion, which would expand coverage to more than 150,000 Kansans.

“That is something the Legislature has been able to do for years, and it’s just now that they’re deciding to come in with a proposal. And that’s to distract from the Medicaid expansion issue, which some would like to avoid like the plague,” Kelly said.

“We can’t let that happen. We cannot be distracted by these other things including the Medicaid reimbursement hikes that they’re proposing and this waiting list for IDD. We cannot let those distract from the absolute necessity of expanding Medicaid,” she said.

House and Senate budget writers drafted two separate proposals for expanded slots but advocates say both constitute a drop in the bucket against an ever-increasing waitlist. And providers of IDD services warn increases need to come at a careful pace to ensure enough providers exist.

The longer policymakers go without meaningfully addressing the waitlist, advocates say, translates to more suffering for disabled Kansans.

“They’re suffering and the question is: Can they beg, borrow or steal from parents, family members and others to help them, so they can eke out some existence while they’re waiting for these services to be established?” said Rocky Nichols, executive director of the Disability Rights Center of Kansas.

Wraparound services

Home and community support waivers fund services people on Medicaid disability need to accommodate their disability in daily life. That can often mean support staff in the home or a day service so those with intellectual and developmental disabilities that is similar to what they may receive in special education.

“What we’re really advocating for with the waitlist and the wait times are the wraparound services,” said Sara Hart Weir, executive director of the Kansas Council on Developmental Disabilities, adding that the services help individuals “thrive in their own community.”

Padding hopes that when Gavin graduates high school he can be on a track to employment and independent living. But he’ll need significant services to achieve that.

Without waiver services that would allow the family to enroll him in programs to work on skills or hire help, Padding worries she’d have to quit her own job to stay home and take care of her son.

“If he had asthma or he had diabetes they wouldn’t say, ‘Oh I’m sorry we don’t have enough doctors to address your issue, you’re going to have to wait eight to 10 years,’” Padding said. “That’s not acceptable.”

Families whose children have already aged out of high school are spending down their savings to ensure their child gets enough care and often accepting a lower level of care than what they would like to see.

And Kansas isn’t unique. Elizabeth Priaulx, a senior legal specialist at the National Disability Rights Network, said many states have thousands of people on their waitlists. These states have decade-long waitlists that mean it is often only possible to jump to the front if your caretaker becomes unable to help you.

“The state has to create criteria that becomes by necessity that you only get off the waitlist if another waitlist recipient dies,” she said.

Rick Elskamp, from Topeka, said his family was paying around $20,000 each year to send his daughter with developmental delays to a day service before she finally got onto the waiver.

Marvin Miller, from Wichita, said his daughter Lilly, who has Down syndrome, has been lonely since she aged out of high school and didn’t have waiver services to immediately start working with a day program.

“My concern is every month, every year that if we don’t get some of these high quality programs the waivers provide we’ll see more regression and we won’t be able to catch up,” he said.

Kim and Tim Deeves said their world was “thrown into a bit of a tailspin” when their son Jackson, who has Down syndrome, graduated high school without coming off the waitlist.

Tim Deeves noted that, at 21, Jackson wants to spend time with others his age, not his 53-year-old parents, but he can’t get that sort of time as consistently as he once did.

“Anything he does socially is up to us to find,” Kim Deeves said. “He’s really bored.”

They looked for a day service for him but, amid a worker shortage and the existence of centers that will only take people on the waiver, they couldn’t find any options.

Jackson has been on the waitlist for 10 years but still didn’t get services in time for graduation. He needs 24-hour care and his parents both work full time. They’re currently using Jackson’s social security checks to cover in-home care while they’re at work.

“It’s frustrating when we learn that it has been neglected and Kansas is at a crisis level for families on the waitlist and there may not be a service out there even if you get on,” Kim Deeves said.

Renewed effort

For the first time in years Kansas lawmakers appear poised to devote the most significant chunk of funds in years to reducing the number of Kansans on the waitlist.

Last month Kelly, after initially allocating no funds for increasing the number of waiver slots, asked lawmakers to allocate $23 million to add 250 slots to each waiver program.

The Senate accepted that addition when crafting its budget proposal. The House, meanwhile, allocated around $46 million to add 500 slots to each waiver program and placed language in the budget requiring the Kansas Department on Aging and Disabilities to provide estimates in its next budget request of what it will take to keep both lists below 4,800 people.

“We’re gonna have to continue doing this, this isn’t a one-time thing,” said House Speaker Dan Hawkins, a Wichita Republican.

It’s unclear what the final budget will include. Sen. Rick Billinger, a Goodland Republican who chairs the Senate budget committee, said he’s open to including more slots than the Senate initially allocated.

The Kansas Department on Aging and Disabilities is also in the process of approving a separate waiver that would be available to Kansans with disabilities who need some services but may not need everything offered on the community support waiver.

“I believe it will take half the people off of the waitlist,” Rep. Will Carpenter, a Butler Republican, said.

Disability rights advocates are encouraged by the focus on the issue by House Republican leaders.

But they remain concerned that proposed action is too limited. Nichols said he had pushed for a 20% reduction in the IDD waitlist, more than 1,000 slots. With an expansive budget surplus, he said, the state was well positioned to eliminate the list in five years with 20% installments. Kansas has eliminated its waitlist in the past, Nichols said, and is capable of doing it again.

In Virginia, Republican Gov. Glenn Youngkin announced the state would spend $300 million to eliminate its 3,400 person waitlist.

“When some policymakers say ‘well we can’t reduce the waiting list that much for whatever reason,’ there’s always some new barrier, some new reason,” Nichols said. “The facts show that that’s not true.”

“Kansas used to not have a waiting list and so it’s just about focusing and getting the job done.”

During a budget debate Tuesday House Minority Leader Vic Miller, a Topeka Democrat, tried to add money for additional slots. Doing so, he argued, would help providers increase their capacity.

“Providers have no reason to increase capacity unless there is a demand for it,” he said. “If you build it they will come.”

But Republican lawmakers have advocated instead for a slow approach that also focuses on infusing funds into provider reimbursement rates to ensure there are workers to provide services to recipients.

“I don’t think we can spend enough to get it all cleared out that quick,” Hawkins said. “If we did, I’m not sure there’s enough services out there to handle that.”

Matt Fletcher, executive director of Interhab, a network of IDD providers, said the state needs to develop a strategic plan for eliminating the waitlist overtime. If that doesn’t occur, he said, it will set providers and recipients up for failure when there aren’t enough services to meet the demand.

“This is one of the most, if not the most, challenging human service issues that has faced the state of Kansas,” Fletcher said. “So you cannot resolve something of that level of complexity without a serious strategic planning effort.”

For years, Rep. Barbara Ballard, a Lawrence Democrat, said lawmakers have talked about the waitlist. But for a long time the state didn’t have the money to fix it. And once the money existed, the issue was complicated.

“There’s an alarm went off when it’s over 5,000,” Ballard said. “Every year we talked about that number going up but I think when it hit that crisis it was like, ‘Whoa, we’re at that point now where we really have to do something.’”