Parents of kids with autism in small B.C. communities want more clarity around changes to supports, funding

Four times a week, Rosseana Gauthier takes her four-year-old son to an autism support clinic in Cranbrook.

She had spent months searching for the right services for her son, including behavioural therapy, but it was clear it wasn't a good fit. Eventually she found Windy Ridge Autism Services, a play-based developmental autism service provider in the southeastern B.C. city.

It's a service she worries they will lose once changes are implemented to the province's system that funds supports for neurodiverse children and youth — details of which have yet to be provided, months after the changes were announced.

Her worries are shared by many, including families in small communities in B.C.'s Interior and north.

Hub model uncertainties

On Oct. 27, 2021, the B.C. Ministry of Children and Family Development said it would be making support services accessible to neurodiverse children and youth age 19 and below with or without a diagnosis, through what they call "one-stop family connections hubs."

The hubs are scheduled to open in the northwest and central Okanagan in 2023 before launching across the province in 2024.

Under the current system, parents need an autism diagnosis for their child to access up to $22,000 a year in funding for each child under the age of six, and up to $6,000 for each child age six to 18, to pay for supports of their choice, including those provided by private clinics and specialists providing at-home services.

When the two new hubs open, parents receiving individualized autism funding will have the option to continue with their current supports or to opt into the new hubs' services.

But in 2025, that funding option will be phased out, meaning parents will no longer be given money to pay for services they choose.

Gauthier worries that could mean her son will no longer be able to attend Windy Ridge unless she pays for it out of her own pocket.

The changes are also concerning to Windy Ridge founder Susanna Passey, who says the new model could put many private service providers out of business.

Over the past month, CBC spoke to 20 private service providers throughout the Kootenays, none of whom said they'd been consulted by the province about the changes or told what it would mean for their future, despite repeated requests for information.

The ministry said it has consulted with parents on the changes and will continue to do so. But none of the service providers knew of any clients who were involved in those consultations, they said.

For rural communities, a major question is whether the hubs will be limited to larger population centres such as Kelowna and Kamloops, hundreds of kilometres away from Cranbrook.

Laura Munoz, an occupational therapist based in Nelson, B.C., who spends several days a week driving hundreds of kilometres around the Kootenays to provide children with at-home care, says she sees first-hand how important her services are. 

But many of her clients pay for services with the help of government funding, she says, and she's not sure she'll be funded to do her work after the switch to the new hub model is made.

"With the new hub model ... I think it's gonna create more barriers for families who already have a difficult time," she said.

Province promises support

In their announcement, the province said the new hubs will "provide families in surrounding communities with the services offered in larger centres, either through virtual technologies or mobile services."

But virtual services aren't an effective option for her son, says Gauthier.

"When he physically goes to therapy, there's no other distractions. He just does therapy. Virtual services are kind of hard for him."

Mitzi Dean, minister of children and family development, says at-home care will still be an option for kids in small communities.

She also said the new service model will allow for quicker access to services for neurodiverse kids without a formal diagnosis.

"If you're a mom or a dad and you're worried about your child, aged two or three, but you have to wait two years to get a diagnosis to get access to funding, your child is already experiencing more developmental delays," she said. 

Gauthier says she just wants some certainty about what the changes mean for her son.

"My concern is that he won't have access to the same services he does now."

CBC British Columbia has launched a Cranbrook bureau to help tell the stories of the Kootenays with reporter Brendan Coulter. Story ideas and tips can be sent to brendan.coulter@cbc.ca.