Advocates Fight for a Program for Children with Severe Behavioral Needs
While the Ohio House speaker saga drags on, more than 150 bills are awaiting action. One is a measure that would preserve money for a program that serves more than 800 at-risk kids with severe behavioral needs each year.
Eight-year-old Pauly Belletti is an outgoing, energetic first grader in Parma.
“School is awesome.”
“Why is school awesome?”
“It's because you do cool stuff in art and do cool stuff in gym and do cool stuff in music.”
Pauly was diagnosed with autism at age 2. His mother Lisa Gonzalez says life hasn’t always been this good for Pauly.
“Once he started school, they were able to make sure he was in the proper learning environment. He used to have to wear a helmet because of expression -- he didn't know how to express himself so he would just bang his head and hurt himself. He hasn't worn a helmet in a year and a half,” she said.
Pauly is the third of Gonzalez’ children to benefit from PEP Connections, established more than 40 years ago in Cuyahoga County to coordinate care for high-risk kids with severe behavioral health needs.
PEP Connections costs the state around $2.5 million a year for services such as intensive care management, summer camps, and alternatives like music and art therapy. Advocates say if these kids were institutionalized, it would cost at least $100,000 for every child every year.
PEP Connections says it was told two years that the state would be moving the program into Medicaid managed care, and because state funding to the county for PEP Connections would be duplicative under this plan, that funding will end on June 30.
'On June 30th, the lights go out because there's no other funding source to support what we do.'
But Frank Fecser, who’s the CEO of the organization that operates PEP Connections, says there’s been conflicting information on whether these alternative services – which aren’t paid for by Medicaid but are provided through a waiver – would still be funded, whether the waiver will be pulled, or whether the state would move forward with a service to coordinate care.
“We tried to get the state to understand that without those services being continued, on June 30th the lights go out because there's no other funding source to support what we do. And ... the state has been ambivalent in discussing this with us,” he said.
The Department of Medicaid declined a recorded interview, but said in a statement that Cuyahoga County had been notified two years ago of the coming change. And the statement says PEP Connections was also informed that to continue to provide those services, it would have to do what every other behavioral health care provider would also do – work with managed-care plans to be included in a provider network starting in July 2018.
Two state lawmakers have stepped in – Democratic Rep. Nickie Antonio of Lakewood and Republican Sen. Dave Burke of Marysville. They wrote to Gov. John Kasich, asking him to help find a way to continue funding for PEP Connections for the next year or until another way to deliver the services is developed. And in the meantime, Burke says the Senate tacked onto a House bill on organ donation an amendment to fully fund PEP Connections for the next year.
“I would have to think the governor of this state, as much as he's spoken about autism, which certainly falls into the PEP program and family values, this has got to be just a simple oversight by this administration. And I'm happy that the General Assembly can assist this administration and remedying a problem that I think was unforeseen because of the monstrosity of Medicaid and the difficulty managing individual programs like PEP,” he said.
'Costly and catastrophic'
Burke says that should buy time for the program, which he wants to see expanded throughout the state. But right now the bill is stalled in the House because of the Speaker fight.
PEP’s Chief Clinical Officer Habeebah Grimes says discontinuing this program could have costly, catastrophic effects if families can’t be connected to other options.
“Our emergency departments would be a place we would need to look if their child is at imminent risk for harming themself or someone else. We would look to our school district partners, our children and family services, and unfortunately our juvenile justice partners would likely see an increase in need from the children that we serve,” Grimes said.
The state said in a letter to Burke and Antonio that it’s aware of the legislation to fund PEP Connections, and gives no indication that the bill would be opposed by the Kasich administration. But it also doesn’t suggest that the plan to move the program into Medicaid managed care will be delayed or changed.