Pilot program helps older youth with developmental disabilities
LaChristopher Stewart stood outside in the driveway of his South Euclid home while staff from the Cuyahoga County Board of Developmental Disabilities met inside with his mother, Sandra Moore.
Stewart likes to be outside, and on this day he was using a coping strategy he learned from developmental disabilities board staff. He took a break from feeling overwhelmed by the number of people who were sitting in his living room.
Stewart is 18 years old, has mild autism, attention deficit hyperactivity disorder and a cognitive psychosis, which can impair learning and daily functioning.
“He was having meltdowns,” Moore said. “He was tearing up the house, putting holes in the wall. He was just doing a lot of things, and I didn't know how to handle the situation.”
Stewart refers to the visitors as “the girls,” a group of professionals assigned to his Intensive Support Team or IST. That's a Cuyahoga County Board of Developmental Disabilities program, begun in 2022, that offers support for youth with disabilities and severe behaviors. The goal of the program is to keep families together by preventing the removal of youth with disabilities from their home. It’s geared toward older youth ages 14 to 22.
Lori Mago, the board’s division manager of assistive technology and children’s services, said her team heard from families of youth with disabilities about the struggle in their homes and the need for resources and support.
“As children get older and have severe behavioral issues along with developmental disabilities, ... these kids become harder and harder to maintain in their own homes,” she said.
Mago said the lack of insurance coverage for certain services like Applied Behavioral Analysis, or ABA, therapy for older youth creates an unmet need. ABA therapy uses positive reinforcement to shape desired behaviors in those with autism. Stewart has an ABA therapist, but that’s not the case for all participants, as the program is specific to each child’s needs and some children don't have the necessary insurance coverage.
Funded through local levies, IST provides weekly home visits with an emphasis on parent training.
Rick Cirillo, Chief Clinical Officer of the county board, said it’s not unusual for youth and their caregivers to suffer trauma because of economic, environmental and other disadvantages. One of the ways to shift behaviors is to make life more predictable. Social stories, a series of pictures that help prepare youth for what to expect in life, are an example of that, Cirillo said.
“And that predictability often has a calming influence,” he added. “Another thing you can do is, you can give a person a sense of control. When people have a sense of control, it tends to temper, to some extent, more traumatic types of reactions. We tend not to feel traumatized over things that we perceive we have control over.”
The program is also designed for children who need crisis beds. Families may need respite care, which is temporary institutional care for a child with disabilities, providing relief for their usual caregiver. Host families or community-based agencies provide crisis beds, but there are not enough beds to meet the need in the county. Mago said if they identify families that are struggling early enough, they can prevent other actions, like loss of custody.
The lack of crisis beds for kids with disabilities is an issue throughout Ohio. Director of the Ohio Board of Developmental Disabilities Kimberly Hauck said the state has a program that’s similar to Cuyahoga County’s. It’s called the Multidisciplinary Comprehensive Assessment Team, also known as MCAT, which also helps keep youth with their family.
“Out of the 30 families that we’ve supported in MCAT, I believe all 30 of those youth have stayed in their house or stayed at home with their families,” Hauck said.
Gov. Mike DeWine's 2023 state budget proposal, still being considered by the legislature, includes $14 million for youth with complex needs. Hauck said MCAT is part of the proposal, and they’re hoping to expand the program.
Stewart’s mother said the Intensive Support Team taught her how to react differently during a stressful situation. Instead of raising her voice, she now stays out of her son's space until he calms down so they can have a conversation.
“He get to acting up, I act worse,” she said. “And that just made him go into another way of acting out."
"That picture’s hiding a big hole on the wall," she said, pointing to a painting on the wall. "You know, the little things that he would do, I don't have that problem anymore because I’ll just let him have his space.”
The team also implemented ways for Stewart to learn organization and hygiene, such as putting labels on his laundry baskets, so he knows when his clothes are clean or dirty.
About halfway through the meeting, Stewart walked in through the front door. “The girls” talked to him about the snow fall that covered the ground that morning. The conversation shifted to focus on his interest in drawing, and the IST staff asked him if he needed more paper. He said "Yes," and the staff offered to bring him more paper the following week.
IST support includes occupational therapy, speech and language therapy, a case manager and a variety of behavior supports, like a tool called the anger thermometer. Stewart hangs his anger thermometer on the wall by the front door so he can look at the pictures and express how he’s feeling.
“What zone are you in now,” Moore asked.
“Happy,” Stewart said.
The county has helped 26 families so far and the hope is to serve 100 by the end of 2023.
For more information on Intensive Support Team, visit Cuyahoga County DD's website or call (216) 241-8230.