Parents and members of the autism community opposed to B.C.’s plan to change its funding and service delivery model are rallying outside incoming-premier David Eby’s constituency office in Vancouver.
It has been one year since the province announced plans to phase out direct funding to families of children with autism and replace it with a new centralized support hub model by 2025.
Read more: Parents of children with autism seek to avoid ‘disaster,’ protest B.C.’s new funding model
The plan has been heavily criticized by autism families who say it will put their kids in competition for resources with other children with support needs, and replicate problems that cropped up when Ontario revamped its own autism services model.
Under the existing program, families with children under the age of six are eligible for $22,000 in funding per year, dropping to $6,000 per year ages six and up.
Protest organizer and parent Jennifer Newby said that direct funding has allowed her to support her two children with tailored, specialized support — which she says she’ll lose at a critical point in her boys’ lives.
“We will be smack dab in the middle of puberty when we lose our team of specialists,” she said.
“So all the people who have supported us for years learning things like how to toilet train, how to be more independent with teeth brushing, bathing, dressing, learning to communicate and self advocate — we’re losing them at the time when every child struggles with the transition to puberty, and that’s such a critical juncture.”
The new hubs, which the province is calling ‘family connections centres‘ will serve children with autism along with kids with other support needs, without the requirement of a diagnosis.
Newby said with an estimated 80,000 children in the school system that require support of some kind and over 20,000 children with autism currently receiving direct subsidy support those hubs will be tasked with providing services for over 100,000 youth.
Parents don’t believe the resources exist to make that system work in any kind of a timely or effective way, she said, adding that they expect long wait lists instead.
Autism parents who fought for years to get the level of current funding support feel like they’re losing everything they gained through painstaking advocacy, she added.
“Show us the budget that’s going to increase for a five-fold clientele. Show us where the service providers are coming from. Show us how you think this is going to work, because right now all the information we have tells us that it won’t.”
Newby said despite repeated attempts to voice their concerns and continuous pressure from the BC Liberal opposition, it feels like the government is ignoring parents.
BC Liberal house leader Todd Stone said the Opposition intended to press Eby to reverse course on the plan.
“This move to a hub model is a terrible policy decision that for whatever reason the government has been really bull-headed about and moving forward with,” Stone said.
“Despite parents who actually know what’s best for their kids saying to government this isn’t going to work, destroying those individualized supports isn’t how we’re going to provide better and support for children with autism.”
In an interview Thursday, Children and Family Development Minister Mitzi Dean stood by the new model, which she said was built on recommendations from the province’s independent representative for children and youth and a select standing committee of the B.C. legislature to move to a “needs-based” system.
“Services in the current approach are locked behind a diagnosis. So even those children who received a diagnosis and go on to receiving services have missed some crucial years of the development without receiving services,” she said.
“We’ll make sure that whenever a child or youth has need they’re receive services at that time and at that stage of their development.”
The NDP government says the hub model will clear a wait list of more than 6,000 kids in line for neurodiversity assessments, while also providing services for kids with Down syndrome and fetal alcohol spectrum disorder.
Pressed about the ongoing lack of support from autism families, dean would not say whether the province would consider scrapping the new model.
Instead, she pledged to listen to families
“I take the concerns that have been raised with me very seriously, and we will continue to review the implementation in the areas where services are going to be delivered first and we will learn from those experiences,” she said.
Meanwhile, Newby said she and other parents will be taking their concerns directly to the incoming premier, though she wasn’t optimistic he would show up at his office in Vancouver.
“We invited Dave Eby to come. I don’t think he will, but we will see what happens.”
“I can’t live without hope, so I would hope he would get this right and really start to listen to our concerns.”