B.C. to launch ‘circle of care’ for neurodiverse kids but parents have many questions

British Columbia is set to launch one-stop support centres for children with ADHD, Autism, and Down syndrome, but parents say promises of a no-wait system that won’t require assessments or a diagnosis seem unrealistic due to a shortage of health-care professionals.

The plan is to open 40 so-called family connections centres, or hubs, across the province. Four are slated to provide services under a pilot program next year — in Prince Rupert, Terrace, Smithers, and Kelowna.

The province has given community agencies until July to tender for initial implementation of the program, and contracts are expected to be awarded in the fall. More proposals will be sought for the remaining centres that are to begin operating by 2024 to support neurodiverse kids and youth up to age 19.

The province announced in the fall it would be changing the current funding model by 2025. At the moment, families receive up to $22,000 a year for a child until they are six, and $6,000 annually to age 18. The funding can go toward behavioural interventionists, counsellors, speech therapists, and a host of other approved services. Following the announcement, several protests were held in front of the B.C. Legislature from concerned families, and months later the pushback continues.

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Mitzi Dean, minister of children and family development, said her ministry will be “observing where families are able to make that transition and what it is that’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 behavioural interventionists and replace a patchwork of programs that are “not working for far too many families.”

Parents can access the centres when they start noticing their child is not meeting certain milestones, she said.

“The problem at the moment is that services are locked behind a diagnosis,” she said. “And that limits access to services at the time that a parent or family might recognize that there might be a need or an issue. Then that causes that bottleneck as well. Then, even depending on what diagnosis you get, you still might not get services, or you become a case manager for your own child.”

Dean said parents are “exhausted” trying to find and co-ordinate support on their own and will no longer need to make that effort under the new system, which aims to provide disability and support services to about 28 per cent more children earlier in their development.

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

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

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

Government “spin” over autism funding has created divisions about 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 on the government to come up with solutions,” Boyle said, suggesting funding could have been provided more equitably to all families in need, instead of being taken away from those who had fought to get it.

Experts question the rollout

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, would get help at a hub without having had an assessment, which can be time consuming and complicated.

Behaviour, medication, sleep and eating patterns, parenting and triggers are among the many factors that must be considered during an assessment, said Murray, former head of the ADHD clinic at BC Children’s Hospital. Most effective intervention strategies were based on such an assessment, she said.

“Who’s going to be working in the hubs? The child and youth mental health teams don’t take kids with ADHD,” Murray said of the service currently provided by the Children’s Ministry.

ADHD is not officially recognized as a disability, so children often do not get the support they need at school, even after their parents have spent thousands of dollars on assessments through the private system, she said.

“I worry that this is a watered-down version of an appropriate assessment,” she said of the hubs.

Parents concerned about timeline

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

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

She attended a town hall last fall after the government announced the hubs and said she felt hopeful that children and youth with ADHD could finally get some support, which isn’t provided at most schools because many teachers are not trained in basic knowledge about the condition.

“It was not clear on details,” she said. “There was really nothing ironed out. Initially, it was like, hey guys, this is awesome. But really it is not. There are so many concerns.”