There is growing pushback from parents and advocates in British Columbia’s autism community over planned changes to funding supports.
B.C.’s NDP government announced the plan Wednesday, which will phase out direct funding to families of children with autism by 2025, and replace it with a new centralized service hub model.
“It’s devastating, it’s absolutely devastating,” Roxxane Black told Global News.
Black learned her son Reid was on the autism spectrum at age two. He’s now 19, and while he is mostly non-verbal, he’s developed into a happy young adult with his own interests and skills.
Black credited that progress in large part to the supports she was able to access with direct provincial funding, beginning with up to 40 hours per week of behavioural intervention treatment as a young boy.
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.
Black said parents are able to develop a more tailored approach and to stretch that money much further by managing their own kids’ treatment.
“I managed it, I staffed it, I did the payroll, I did the scheduling, I managed his therapy treatment protocol,” she said.
“Now the government is going to take it over and it’s going to go to agencies. That 40 hours a week I managed to squeak out of getting treatment for my son — he may get five hours now out of an agency.”
The province insists the new hub model, details of which have yet to be released, will provide easier access to resources for all children with special needs.
“These hubs will be one-stop service centres run by community provider where families have access to a range of professionals without the need for a referral or a diagnosis,” Minister of Children and Family Development Mitzi Dean said.
“Their children will still get services. The hub model is very inclusive for children with various diagnoses, not just autism.”
But advocates don’t believe the system will provide more support, and will instead pit parents of children with special needs against one another in a competition for resources.
Autism BC board president Kaye Banez said many parents were seeing success under the current model.
“Many families are able to customized and put together a great plan for their children, and they are thriving,” she said.
“That will be gone by 2025, and the relationships built with great practitioners and all the resources they’re having, a good combination, will be gone.”
Banez said aside from a single meeting with Dean, her group was not consulted about the changes.
As a result, advocates have been left with major questions including what “needs-based” actually means, who will determine what supports are available, whether there will be limits on what families can access, and what happens if a child needs more.
“We need to have choices and we need to have options,” she said. “Autism is such a complex diagnosis. Every child is different.”
Black’s son, Reid, has aged out of government support, but she said she feels the need to fight for parents that come after her, as the parents who came before her did.
She said she fears for the mental health of parents who are already struggling to care for their kids with the current funding.
“Even with funding and treatment, there are a lot of struggles. Moms that are mostly the caretakers at home struggle with anxiety and depression and can’t have full careers because they’re too busy looking after their kids,” she said.
“People have talked to me about these things (and said), ‘Roxy, I’ve thought about suicide, I’ve thought about putting my kid in the car and driving off that cliff.’ These are the conversations I have with parents. It’s heartbreaking.”
As for whether the changes will be accepted quietly by families, Black had one message for the provincial government.
“We’re coming after you,” she said. “This is not going to happen.”