Idika Njoku (centre) and his parents
By Louise Kinross
Anthea Charles’ family was in crisis. When her autistic son Idika hit puberty, he began repeatedly running away from school, jumping on cars, having long meltdowns where he would throw things, and pushing his sisters. He even tried to jump out of house windows and cars. Because he had limited speech, he couldn’t explain what was happening.
“He’d never done that before, and we didn’t know how to deal with it,” Anthea says. “It was traumatic for everybody.”
This July Idika became part of a new multi-disciplinary treatment program designed for children with complex behavioural, developmental, medical and mental health needs in Ontario.
The Extensive Needs Service is being delivered by three children’s hospitals—Holland Bloorview, the Children’s Hospital of Eastern Ontario and McMaster Children’s Hospital—with $97 million in funding from the Ontario government.
The program at Holland Bloorview brings together a team that includes a developmental pediatrician, a large behavioural therapy team, occupational and speech therapists, service planners, and a psychologist, psychiatrist and pharmacist.
“This is a wrap-around approach where we look at the client and whole family and think about the best way to support and address every need,” says Justine Wiegelmann, behaviour therapy team lead for the service at Holland Bloorview. “Sometimes that’s multiple treatments at once, and sometimes it’s prioritizing one thing before we can begin other things. It’s customized and tailored.”
Justine says Holland Bloorview and its partners will work with about 375 children up to the age of 18 each year, and their families. “These are children who may have been denied treatment from other service providers, including respite programs, because they engage in unsafe behaviour. They may have stopped going to school and their families become quite isolated.”
Idika has been receiving two-hour behavioural therapy sessions twice a week at Holland Bloorview, often with two to three staff. “They have really set him up for success,” Anthea says. “They met him where he’s at and didn’t put any timelines on him. Idika is excited to go to his appointments. I can see the love and care and patience of the staff. They’re really flexible. His school noticed that he was much calmer and using more words when he went back in September. He isn’t running from school like he used to and is able to attend.”
One of many interventions offered is applied behaviour analysis (ABA) “with a trauma-assumed approach,” Justine says. “We work on skills like functional communication so they can get their needs met without interfering behaviour, and teach them skills to tolerate everyday life events and disappointments. This allows them to participate more fully in the activities that are important to them. We develop strong rapport and trust with the child and their family. In every session kids are given the opportunity to consent, or not consent, to treatment.
“Children are given all of their favourite things, whether they engage in the therapeutic work or not. Opt-out spaces are created in each treatment room where kids can access their favourite things, like an iPad or colouring or sensory items, even if they decide not to participate or need a break. There’s no withholding of preferred items contingent on a specific set of behaviours. We have those same items with the therapist where they’ll be asked to do work. We’re finding kids will take breaks here and there, but then do choose to work with the therapist. We never ignore a child when interfering behaviour occurs, and instead meet it with empathetic statements and understanding to further build relationships.”
The Extensive Needs Service starts with a multidisciplinary assessment. Children and families are involved in setting goals “and every family has a primary clinician who follows them throughout their time with us, so it’s not an environment where families are asked to retell their story multiple times,” Justine says. “We can pull in our colleagues and have them consult or collaborate with us whenever needed. No treatment is in a box. You have one family in front of you, a kid who needs support, and you can actually provide the support they need, which may be totally different from what’s needed for the kid in the next session.”
As a clinician, Justine says the program “is really a dream. In the past, I’ve had a sense of what a family might need, but that service didn’t exist. So I had to make recommendations involving multiple service providers across the region to try to address each need.”
Service planners can help parents find funding sources, fill out forms, look into other community programs, and help with challenges with housing or paying for groceries.
There is no “hard stop” to service, but it’s anticipated most clients will spend about a year in the program.
Surrey Place provides the service coordinators for the service and is the point of entry for families enquiring about their child’s eligibility. The number is 1-833-575-5437. Grandview Kids and Michael Garron will provide the services closer to home for kids in East Toronto and Durham.
The provincial service aims to reach about 1,000 children and teens each year.
“Thanks to the support from the Government of Ontario, we are helping to support a health system that is more agile, socially accountable and accessible to families,” says Julia Hanigsberg, president and CEO of Holland Bloorview.
“It’s been an answer to prayer,” Anthea says, noting that their family had no support for Idika from age seven to 15. “We don’t have the money for anything and hadn’t received any funding. It was a matter of do what you can. We mainly stayed at home and avoided things.”
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