ST. Kentucky families raising children with autism demand road map for residential care

FRANKFORT, Ky. — They drove in from Owensboro, Louisville, Lexington and Elizabethtown. They filled a conference room at the Sawyier Public Library in Frankfort. And they waited for the people who could actually change things to show up. Most didn’t.

Kentucky families raising children with profound autism gathered recently to demand answers from state officials about a crisis playing out quietly in homes across the commonwealth — children so severely impaired they require residential care that doesn’t exist in Kentucky, leaving parents to send them hundreds of miles away or, in some cases, surrender custody to the state just to access help.

Top officials from the Cabinet for Health and Family Services, the Department for Medicaid Services and the Governor’s office were invited. So were members of the General Assembly. Louisville State Rep. Sarah Stalker was among the few lawmakers who came.

“Where is the blueprint for this?” Stalker asked. “Where is the road map? How can we make it easier? Why have we not figured this out yet?”

‘I was afraid of my own child.’

For many of the parents in the room, the path to this meeting ran through years of crisis — psychiatric hospitalizations, violent episodes at home, and a Medicaid waiver system that can take a decade or more to navigate, only to find the promised services aren’t available.

Rachel Moldoveanu, a Louisville mother whose son, Frankie, was sent to a facility roughly 700 miles from home, described the moment she realized her family had reached a breaking point.

“For the first time in my life, I was afraid of my own child,” she said. “He would attack us while we were driving, almost caused numerous accidents.”

She used all her resources, called top officials from Medicaid and CHFS, called attorneys and the Seven Counties Crisis Hotline. The phone kept ringing. She was passed from one number to the next. When someone finally called, she was told there was nothing they could do.

“I began to network underground,” Rachel said. She was approached multiple times by caseworkers who told her surrendering custody to the state was the only way to access resources. She refused.

“Leaving your child 700 miles away is devastating,” she said. “It is a leap of faith that you can’t even describe.”

Shannon Crawford, whose son Chase is profoundly autistic and nonverbal, described years of violent episodes — broken windows, head-banging in public parking lots — before she made the ultimate decision to get him help out of state. She said a WHAS11 story on the Moldoveanu Family was the deciding factor.

“Everything I learned was through other mothers,” Crawford said.

Mariam Applegate, whose daughter, Reese, is now at the same out-of-state facility as Frankie and Chase, said the process of navigating Medicaid left her with more questions than answers.

“I don’t know who to call,” she said. “Who is my point of contact?”

A system with no one at the helm.

Kentucky currently spends an estimated $14 million a year in Medicaid funds sending children out of state for residential care — a fraction of what advocates say is actually needed.

Dr. Sheila Schuster is the chair of the Medicaid Advisory Council and a retired child psychologist. She began her advocacy in the 1970s when autism prevalence was estimated at 1 in 10,000 children — today it is 1 in 31. She said the gap reflects both a funding problem and a political one.

“There is such a negative feeling among many legislators that Medicaid is overspending, covering people who don’t need the services,” she said, adding that she intended to relay what she heard to top Medicaid officials.

She said there are 17,000 Kentuckians on waiting lists for Medicaid home and community-based waivers. State lawmakers this year approved funding for 405 new slots.

Anna Whites, a Frankfort healthcare attorney who has worked with the autism community for two decades said the core problem is that no single agency has been designated to lead — or to be accountable.

“There needs to be a designated lead agency,” Whites said. “A lot of the money is based in Medicaid, but a lot of the expertise is based in other departments. There is no handout that says this is what you do.”

Whites said she had reached out to Medicaid, the Cabinet for Behavioral Health, the Department of Education, the Commissioner of Medicaid and the Governor’s office to arrange a working group. She was told they ‘didn’t need to meet.’

“The money is there,” Whites said. “Children have Medicaid coverage, but Medicaid doesn’t always pay providers. So investors are unwilling to put money toward construction or revamp of a campus until they know they’ll be paid for the job rendered.”

Rep. Stalker echoed the call for investment closer to home, noting that Kentucky is already paying millions in Medicaid dollars flowing out of state.

“Why wouldn’t we build the infrastructure here so the money stays in Kentucky?” she said.

‘There is power in numbers.’

The families who gathered say they will keep meeting, keep calling their lawmakers and keep showing up — because the alternative is giving up on their children.

“They make us feel like we don’t love our children, and that is not true,” Moldoveanu said. “We love them so much that we are willing to literally wreck ourselves so that they can get the care that they need.”

She ended with a message directed at the officials who stayed away.

“There is power in numbers,” she said. “And shame on them for not walking two blocks to come down here and listen to a room full of desperate parents that need help for their children.”

Families affected by severe autism can reach the Seven Counties crisis line at 502-589-8070.

Elizabeth Fisher, the deputy executive director for the Office of Public Affairs with the Kentucky Cabinet for Health and Family Services, sent the following statement to WHAS11 News:

“Team Kentucky believes healthcare is a basic human right and values the critical role of Medicaid in providing healthcare coverage to 1.4 million Kentuckians, including children with complex needs.

Kentucky Medicaid offers coverage and services for children with autism through traditional Medicaid eligibility as well as Home and Community Based Services (HCBS) waiver programs.

Unfortunately, Kentucky has a limited number of providers who can serve children and young people with high-acuity needs in the Commonwealth. To help address this, Kentucky Department for Medicaid Services (DMS) implemented the Community Health for Improved Lives and Development (CHILD) Waiver program, which provides case management, clinical therapeutic services, community living supports, environmental and minor home modifications, respite, and supervised residential care.

Recognizing the need for additional supports for Kentuckians, Gov. Beshear requested 500 slots for the Michelle P. waiver; 500 slots for Home and Community Based Services waiver; and 250 slots for the Supports for Community Living waiver in his budget proposal. Unfortunately, the General Assembly opted to underfund these critical programs, only funding 110 slots for the Michelle P. waiver; 135 for the Supports for Community Living waiver; and 160 for Home and Community Based waiver services.

Despite the stress being put on these essential services due to cuts and underfunding by both the General Assembly and Congress, CHFS remains committed to working with families, providers and advocates to support children with complex needs.”

WHAS11 News is currently waiting for responses from Kentucky Medicaid and the Governor’s office in response to questions about this meeting. This story will be updated.