Raising a child has its challenges, and raising a child with developmental disabilities is often even harder. It can drain caregivers physically, emotionally, and financially, and some parents don’t have enough resources, support, or funds to continue to take care of their children.
When they run out of options and money, parents often turn to the last available solution: giving up custody of their child so the state of Ohio will step in and provide those resources.
Mark and Susan Butler are Ohio parents who faced this difficult decision with their son Andrew, who has severe autism.
Andrew is nonverbal, which means he doesn’t communicate with words, but he is able to communicate in other ways, with sounds, facial expressions, and hand movements.
Due to Andrew’s developmental disabilities, he sometimes has violent outbursts. When he was younger, these outbursts were easier to control. But as he got older, growing to taller than 6 feet and more than 200 pounds, it became harder for his parents to physically control him.
Andrew Butler poses for a picture in Mt. Gilead, Ohio. [Mark Butler]
"So here you are dealing with this person who intellectually is almost like a toddler, but physically is going through puberty,” Mark Butler said.
“We would lock the basement door and he would be trying to break down the door because of this intermittent rage disorder. You know, this mental illness would seize him. But it's still your kid, right? You still love him.”
Due to these outbursts, and because the Butler family has two other children they wanted to protect, they decided the best place for Andrew would be a residential treatment facility where he could have 24/7 care.
But that’s an expensive option even for families, and many parents of kids with developmental disabilities have drained their bank accounts to provide care. Sometimes, that means families have to make the difficult decision to give up custody so the state will pay for treatment and care.
Residential treatment was unaffordable for the Butlers, but they still resisted making the call to give up custody of Andrew.
Andrew walks with his mom Susan Butler in Whitehall Community Park. [Mark Butler]
“I've never felt so awful in my whole life to be able to say I have a child, I love him, but he's dangerous and we're afraid of him and we need help, and I know that what I'm asking means that we're going to have to come and let you take him away,” he said. “That's the worst feeling any parent could ever have.”
In August 2014, just after Andrew turned 16, Mark Butler made the phone call and voluntarily gave up custody of his son so Andrew could receive the care he needed.
“I remember the day that they came to take him, the day that we surrendered custody and they were coming to pick him up. We were sitting down on the couch and I just got the phone call. They said they running an hour early. And it's like, you know, our time was cut short,” Butler said.
“We're sitting on a couch cuddled up against me, and he started to fall asleep, and I held his hand and I was just looking at his hand and I kept thinking, ‘Gosh, I wish it was like this all the time.’ You know, this sort of special moment that we had, because no matter what is your kid and you love them. It was never his fault.”
Franklin County placed Andrew in a residential facility two hours away.
“When you're poor, at the time, we didn't have a very good vehicle at all. That might as well been the moon,” Butler said. “And there's just a lot of families that are in that situation."
In 2019, however, the state of Ohio created a new program to help families like the Butlers. The state allocated $18 million to the Multi-System Youth Technical Assistance and Funding Program, to provide resources for parents of kids like Andrew.
Andrew walks with his sister Katie in Mt. Gilead, Ohio. [Mark Butler]
As of July 2020, the state received 329 funding requests from families through the program, and it’s given out nearly $6 million to families who need it.
The Ohio Department of Medicaid distributes the money. Director Maureen Cocoran said many of the families they help have lost hope, but these funds can feel like someone threw them a lifeline.
“If you’ve not experienced this in your own family, or somebody that you know very well, it’s hard to understand what it’s like to have a child like this,” Cocoran said.
The size of the requests from families varies, she said.
The program has helped 236 Ohio kids who are able to continue living with their parents.
In May, the state dedicated a small amount of funds to provide iPad to the children. It may seem like a small request, she said, but the device helped them access remote services since so much is online during the COVID-19 pandemic.
No matter how small the request, it’s a way for parents to not even have to think about giving up custody, said Tara Britton, Director of Public Policy and Advocacy for the Center for Community Solutions.
“Ultimately, that’s really where we want to get to,” Britton said. “We want to avoid things getting so dire that tomorrow someone would have to relinquish custody, and I think that’s what we’re working toward in our overall efforts.”
Being a parent to a child with severe developmental disabilities can be an isolating experience, Butler said.
“Families suffer in silence,” he said. “There’s a stigma to admitting my kid has these issues and I’m afraid of them.”
That’s why Butler has advocated along with others for the state to set aside funds so parents don't have to go through what his family went through, voluntarily giving up custody of Andrew.
Andrew Butler was honored with other 2020 graduating seniors from Whitehall-Yearling High School. [Mark Butler]
Andrew is now 22, and he just graduated from the special education program at Whitehall-Yearling High School in Franklin County.
He now lives less than two miles away from his parents, with a roommate who is also on the autism spectrum and staff members who are in the house to provide support. His parents are able to see him every weekend.
But Mark Butler said his work isn’t over yet. He wants to continue to fight for the parents and caretakers of kids with developmental disabilities in Ohio and every state, so everyone can have the resources needed to care for their children.
