More intellectual and developmental disability waiver slots open in Kentucky , but wait list remains huge
By Melissa Patrick
Kentucky Health News
Kentucky legislators approved funding in the latest budget cycle for additional “waiver” slots to help more residents with intellectual and developmental disabilities. These waivers provide housing, therapy and other support for people with intellectual, physical or developmental disabilities and brain injuries.
Some of those slots opened up this month, but the waitlist continues to far exceed available slots.
Stephanie French, spokeswoman for the Cabinet for Health and Family Services, said in an email that the Beshear administration has worked with the General Assembly to create these additional slots.
“While this will help relieve some of the waitlist, we know there is always more work to be done,” French said.
According to the cabinet, there are nearly 14,000 Kentuckians waiting to receive a waiver. The General Assembly funded 1,925 new slots.
Terrry Brooks, executive director of Kentucky Youth Advocates, said he wished there was a simple way to solve the supply and demand issues, but there is not.
“Unfortunately, it’s become a cliche for people to say that budgets are about priorities and values, not about dollars and cents,” Brooks said. “But in this case, that’s actually very true and appropriate because when it’s all said and done, the only way we are going to tackle this problem is through significant budget commitments.”
The cabinet agreed: “More funding is required to truly meet the demand for slots, which historically has been and continues to be more than the supply,” French said.
New waiver slots
The biennial budget will fund new slots for four of the state’s six Medicaid waiver programs.
They include 750 new Michelle P. Waiver slots, of which 250 are funded in the 2024-25 fiscal year, an additional 50 Acquired Brain Injury Long Term Care waiver slots, with 25 of them funded in the 2024-25 fiscal year; an additional 750 Home and Community Based waivers, with 250 of them funded in current fiscal year; and an additional 375 Supports for Community Living Waiver slots, with 125 of them in the current fiscal year.
The cabinet says the plan is to allocate the new slots gradually to avoid overwhelming service providers.
Supply and demand
Despite advocates’ celebration for these additional waiver slots, they will hardly make a dent in the waiting list.
“I understand totally and appreciate that they increased spots, positions or case availability this last session,” Brooks said. “But the bottom line is, if you look at the additional spots that were created and you look at the waiting list, it’s the equivalent of spitting in the ocean — and so a little support is not going to go very far.”
John Boel with WAVE News in Louisville told the story of Kimberly Hurt’s struggles with the waiver program. She told Boel that while she qualifies for a Michelle P. Waiver for her daughter, who has severe autism, the wait list is running eight to 10 years.
This is disheartening, especially for children “on the spectrum” because early intervention is so important, she told Boel.
” You’re really trying to turn a ship, and the faster you get that turn going the better your long-term outcomes are going to be,” she said. “So you really want to get this started as soon as possible, and they’re like ‘yeah we’re going to get you lots of help in a decade.”
According to the cabinet, the waitlist for a Home and Community Based waiver is 1,377 (15.5% of them children and 84.5% of them adults); the waitlist for a Michelle P. Waiver is 9,061 (67% of them children and 33% of them adults); and the waitlist for a Supports for Community Living Waiver is 3,382 (21.9% of them children and 78.1% of them adults). There is no wait list for the other waiver programs.
Brooks said one of the challenges in getting more slots funded is that many of the people who are most affected by these waivers don’t have “political action committees” or “high rolling lobbyists.”
“So it’s easy for their needs to get subsumed by more powerful interests,” he said. ” I’m desperately hoping that when lawmakers see the wait list that is gaining some traction in terms of public awareness, that they know they’ve got to do something about it.”
Again, he said it will take a “huge amount of investment” to move the needle on the waiting list, adding that it will take “citizens who care about these folks” to build their case.
Looking forward
Earlier this year, the cabinet looked into the feasibility of opening up a new Medicaid waiver program for children with severe emotional disability, intellectual disability and related conditions and autism spectrum disorder. It released its findings from the focus groups earlier this month. French indicated that plans are in place to move forward with this new waiver.
“The Beshear administration, alongside the General Assembly, will be implementing a Children’s Waiver in hopes of eliminating or greatly reducing the Michelle P waitlist,” she said in an email.
Beyond that, she said the cabinet “is often able to offer non-waiver Medicaid services for many children and adults.”
Brooks brainstormed some ideas for how to address this issue going forward, noting that while the General Assembly’s Republican majority doesn’t like to use the state’s “rainy day fund,” which now amounts to $3.7 billion, for recurring expenses, maybe there is a creative way to do a one-time spend toward this effort. Or, he said, maybe legislators could make a long-term budget plan that pays for these slots in the next three budget cycles.
Further, he said it’s important to look at the return on investment that you get when you help support a child or family early in their struggles.
“I think anybody that thinks we’re going to solve this overnight is naive. By the same token, we can’t wring our hands and say, ‘Oh, look at that list. There’s nothing we can do,’ said Brooks. “So that balance between doing nothing and thinking we can do it all at once, that’s really a work balance that we need our lawmakers to strike.”