Aug 6. 2024, 95.3, Madison, IN: Waiver wait list growing, swallowing hope for parents of special needs kids
Some parents are having trouble getting care for special needs children
In the Commonwealth of Kentucky, parents of children with special needs because of severe health conditions are supposed to get help if they are granted what’s called a “waiver.”
Waivers get them access to Kentucky Medicaid programs that help with a wide variety of care and living assistance.
Jeremy Haydon qualified for all the waivers he supposedly needed for his son Andrew. He was then told he couldn’t get any specialty care in Kentucky unless he gave up his parental rights.
”So the answer to your inquiries was that you need to sign your child over to the state?”
“Correct,” Haydon said. “Just a feeling of loss and hopelessness and in a hole I didn’t know how to crawl back out of.”
Fortunately for Jeremy and Andrew their state representative made calls and got the state to enter into a special “single case agreement” that immediately provided everything Andrew needed. One case solved, but we’ve learned for thousands of other Kentucky families in similar circumstances it’s an entirely different kind of nightmare.
”Well I cried a lot,” Kimberly Hurt said. “You feel hopeless, like what am I going to do? What am I going to do?”
Hurt cried in hopelessness after learning she qualified for a waiver for state help with her daughter, who she says has severe autism, but the wait list for what’s called a “Michelle P waiver” is running eight to 10 years.
”You can call every year or so and check where you are on the list,” Hurt said. “I think there’s like 5,134 kids ahead of her when I checked, something like that. Especially for kids on the spectrum, early intervention is really important. 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. 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.”
That’s right. According to Sheila Schuster of the Advocacy Action Network, which tracks all this, the wait list for Michelle P waivers has grown from 8,398 in November 2023, to 9,212 in July 2024. The overall waitlist on Michelle P and other waivers for special needs kids has grown from 12,723 to 14,849 in the same time frame.
”If we’re going to move that waitlist, you’re talking big bucks,” Kentucky Youth Advocates Executive Director Dr. Terry Brooks said. “You’re talking about budget-bashing numbers there. It really comes down to what kind of value people place on supporting these folks.”
Brooks said the state budget isn’t about dollars. It’s about priorities.
”This is a very vulnerable population,” Brooks said. “So the question for the General Assembly and the question for the Governor, whether it’s Andy Beshear or whoever might follow him, is where do the needs of this population rate in your priorities? How does this compare to roads, or a battery plant, or other kinds of social issues?”
Kentucky’s legislature just tried to take a bite out of this by approving funding for an additional 250 Michelle P waivers this year and 500 more waivers next year. That doesn’t even keep up with how much the wait list has grown over the last eight months, however.
”But when you talk about 750 slots out of more than 9,000 you’re kind of spitting in the ocean,” Brooks said.
Kimberly’s daughter was diagnosed at age two. She got her on the waiver list immediately. However, the way things are going by the time she receives help she’ll be 10 or 12 years old. Brooks said that’s a world of difference.
”Working with that two or three-year-old, hoping to get them on the right course, so by the time they’re 10 or 12 they have a shot at a better life,” Brooks said. “Delaying that for a decade pretty much dooms that little boy or little girl to a life of dependency and deepening disabilities.”
”We can’t make the children come along developmentally,” Hurt said. “That is a thing that will happen in time, or it won’t. We don’t know. That’s an unfixable problem. But giving people the help and support they need is a fixable problem. And in a life full of problems you can do nothing about, the fact there’s one that we could fix, and we aren’t, says something terrible about our society.”
Brooks said if this issue touches your heart you should call your state rep or senator. He said they may not even know this situation exists. He said the billions of dollars we’re up to now in Kentucky’s rainy day fund can be spent for emergencies. And he believes this is an emergency.
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