End of B.C.’s individualized autism funding ‘could be devastating for some families’: advocate


B.C.’s announcement that it will end individualized autism funding for kids on the spectrum came as a shock to families who have come to rely on it, and have seen their children thrive with the supports it has enabled.

Kaye Banez, president of the board of Autism BC, says the organization had no advance warning about the changes announced Wednesday by the Ministry of Children and Family Development.

“We got the information just like everybody else got the information. It puts our organization in a very tough spot. We don’t have the proper answers for our very concerned and sometimes very stressed-out parents,” she says.

“We were getting some calls to our hotline from parents, and they’re very much stressed out about these changes that could negatively impact their children.”

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The current funding scheme in B.C. allows parents or caregivers to access government money, and then decide how to spend it. Up to $22,000 per year is available for children under six, for older kids the amount is $6,000. The funding can go toward behavioural interventionists, counsellors, speech therapists, and a host of other approved services.

This will end in 2025. This is one way the province is changing how it supports kids who are neurodiverse or who have disabilities, with the aim of reaching more families and making services more accessible. Key to the new approach is setting up “one-stop family connections hubs” that can be accessed with or without a diagnosis from birth until a child turns 19.

Banez says she believes this “hub model” will benefit some families, but she worries others — who have in some cases spent years struggling to find what works best for their child —  will be left behind.

“We do understand that not all families are able to use that individualized autism funding to its full potential because either they live in certain areas where there’s no service providers available, or also there are some families who feel too overwhelmed to put together their own team. It’s a lot to manage, putting together the teams of service providers and dealing with all of that funding. It could help alleviate some of those pressures from some families.”

But it’s precisely because of how much time and effort families have put into finding what works for their kids that Banez says they are worried about what the replacement program will look like.

“There’s also many families who are using this individual autism funding in the best way — and their children are thriving. The children have built a great relationship with these therapists, and they’re really making some great strides. To lose that option of continuing to customize a program for our children could be really devastating for some families. It’s a big loss.”

RELATED: Survey shows B.C. caregivers of kids with autism struggling amid COVID-19

The province’s new approach is described as “needs-based,” which also raises some questions for Banez and the parents she’s hearing from.

“It could be a good thing and it could also be quite a cause for concern. Who determines those needs? Is it the parents who determine the needs?” she asks.

“In this hub model do we have a choice in which therapist we work with? Will this hub system accommodate and provide adequate support? Is there a limitation to the kind of supports that they could provide, such as the number of hours of therapy? Will they’ll be flexible in providing services at home? Our concern is not knowing the details of this new model.”

While Banez says it’s a good thing not to make a referral or diagnosis a requirement, she says for kids on the autism spectrum, a proper and thorough assessment is often crucial in order to figure out which support wil work best.

“It’s not something where you look at one child, then you’ll know what to do for the other child. Without that proper process in place, how can you understand exactly what that child needs?”

The province’s announcement says the changes were made after “repeated recommendations” from the representative for Children and Youth, and after consultation with “with more than 1,500 Indigenous and non-Indigenous families, advocates and service providers.”

According to Banez, Autism BC was not consulted.

“We don’t have the answers and were not given a proper consultation. Some parents may have heard about it, but they were never consulted, asked what is it that they really need,” she says.

“Autism is such a diverse community that we really need to have that meaningful consultation for the families that are going to be affected by this.”

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