BC to launch ‘circle of care’ for neurodiverse kids, but parents have lots of questions

VANCOUVER — British Columbia is poised to launch comprehensive support centers for children with issues like ADHD, autism and Down syndrome, but parents say promises of a no-wait system that won’t require screening or diagnosis seem unrealistic because of a

VANCOUVER — British Columbia is poised to launch comprehensive support centers for children with issues like ADHD, autism and Down syndrome, but parents say promises of a no-wait system that won’t require screening or diagnosis seem unrealistic because of the shortage. of health professionals.

The plan is to open 40 so-called centers or family connection centers throughout the province.

Four are scheduled to provide services under a pilot program starting next year: three in northwestern BC and one in central Okanagan.

The province has given community agencies until July to bid on the initial implementation of the program and contracts are expected to be awarded in the fall. More proposals will be sought for the remaining centers that will start operating in 2024 to support neurodiverse children and young people up to the age of 19.

Families of autistic children will no longer receive current funding of up to $22,000 a year through age six, and $6,000 a year through age 18. Instead, they will receive services through the new system.

Julia Boyle, executive director of Autism BC, said the province has not provided information on staffing and protocols for the “complex transition” to a new system that could see parents of thousands of neurodiverse children “knocking on the doors of these centers.

There isn’t enough time for consultation with advocacy groups before the pilot program begins, and moving completely from individualized funding for autistic children to the new centers is another major change in two years, Boyle said.

“It makes more and more sense to have a phased launch,” he said. “That’s ultimately what I’m pushing.”

The government “spin” on autism funding has created divisions over inequity because many parents of children with other needs have been paying out of pocket, Boyle said. That has led some to accuse the autism community of being “selfish,” she said.

“It’s up to the government to find solutions,” Boyle said, suggesting the funds could have been provided more equitably to all families in need, rather than taken away from those who struggled for them.

The first four centers will be in Prince Rupert, Terrace, Smithers and Kelowna. But it’s unlikely that many parents of autistic children in those communities will immediately decide to forego funding and switch to the centers, Boyle said, since participation in the pilot program will be optional.

That could make it difficult to evaluate the centers before the program rolls out across the province, he said.

Mitzi Dean, minister for child and family development, said her ministry “will look at where families can make that transition and what’s working for that transition.”

Dean said the goal of the new system is to give families access to a team of service providers, from speech and occupational therapists to behavioral interventionists, and to replace a patchwork of programs that “don’t work for too many families.”

“Each family will have a core member of a team that they connect with and work together to design the circle of care to engage their children and youth with support needs,” he said.

Dean did not directly respond to a question about whether psychologists and psychiatrists would be part of these teams, but said mental health professionals and support would be available without a referral.

Parents can access the centers when they begin to notice that their child is not reaching certain milestones, he said.

“The problem right now is that services are locked behind a diagnostic,” he said. “And that limits access to services at a time when a parent or a family can recognize that there may be a need or a problem. So that also causes that bottleneck. Then, even depending on the diagnosis you receive, it is possible not yet getting services, or become a case manager for your own child.

Dean said parents are “exhausted” trying to find and coordinate support on their own and will no longer need to make that effort under the new system, which aims to provide disability services and supports to about 28 percent more children earlier in life. growth.

As for staffing, he said the province is working with service providers to put together multidisciplinary teams.

“By building a system and having local community agencies that can employ a variety of health professionals and also outsource to others that can provide services in the community, that’s how we’ll be able to deliver this system and work in partnership with community agencies.” .

Candice Murray, a registered psychologist and clinical instructor at the University of British Columbia, questioned how a child with attention deficit hyperactivity disorder, which is her specialty, could get help at a center without having had an evaluation, which can take a long time. time and be complicated. .

Behavior, medication, sleeping and eating patterns, parenting and triggers are among the many factors that need to be considered during an evaluation, said Murray, former head of the ADHD clinic at BC Children’s Hospital. The most effective intervention strategies were based on that evaluation, she said.

“Who is going to work in the centers? The children’s and youth mental health teams don’t accept children with ADHD,” Murray said of the service currently provided by the Children’s Ministry.

“I don’t know if they would be involved in the centers, but they have no experience or training, so that’s another concern I have. Where are all these people going to come from and who is going to train them?”

ADHD isn’t officially recognized as a disability, so kids often don’t get the support they need in school, even after their parents have spent thousands of dollars on evaluations through the private system, he said.

“I am concerned that this is a watered-down version of a proper evaluation,” he said of the centers.

Kids with ADHD who don’t get help can end up with disruptive behavior problems, Murray said. Some then suffer in silence until depression and anxiety set in, so their needs must be adequately met in the new system, she added.

Jaymie Nelson, whose two children, Emerson, 12, and Amelia, eight, have ADHD, said it’s hard to believe there won’t be waiting lists at the centers “because there are waiting lists for everything, even paying privately.” there’s a waiting list.”

Nelson said her children have a good relationship with their occupational therapist and speech-language pathologist, and she worries about losing access to these professionals under the central system.

He attended a town hall last fall after the centers were announced by the government and said he was hopeful that children and young people with ADHD could finally get some support, which is not provided in most schools because many teachers are not trained in basic knowledge about the condition. .

“I wasn’t clear on the details,” he said. “There really wasn’t anything fixed. Initially, it was like, hey guys, this is amazing. But it really isn’t. There are so many concerns.”

This report from The Canadian Press was first published on May 16, 2021.

Camille Bains, The Canadian Press

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