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Autism families ‘not giving up’ – South Surrey mom

Roxanne Black says Nov. 24 rally reinforced drive to halt funding-model changes
Advocates and family members rally outside the B.C. legislature Nov. 24, 2021, to protest changes to autism funding. (Kiernan Green photo)

South Surrey and White Rock parents who travelled to Vancouver Island this week to protest recently-announced changes to autism funding said Thursday their determination has been strengthened by the turnout, as well as support from Liberal representatives.

“If anything, the movement’s stronger,” said Roxanne Black, en route to catch a ferry back home to South Surrey following the Nov. 24 gathering.

“Don’t mess with our kids. These are real lives that they’re messing with.”

READ MORE: South Surrey autism advocate says province’s hub model ‘sets us back 20 years’

Black estimated she was among 250 parents and advocates who made the journey to voice their concerns about the decision – announced by Minister of Children and Family Development Mitzi Dean on Oct. 27 – to end individualized funding for children with autism or who are neurodiverse by 2025.

It’s anticipated that the new system will provide help to approximately 8,300 more children, however, opponents say it is a huge step backwards for families of children with autism.

Louise Witt, a social worker and representative of the Autism Support Network of B.C., likened it to a decision made by the Ontario government in 2019. There, the transition from individualized to hub-based care swelled the wait list for autism treatment from 20,000 to 50,000, she said, calling it “a disaster for children and families” that resulted in the loss of jobs primarily held by women.

Black said a parent she knows in Ontario told her that through the hub model, his autistic son gets just 12 hours per week of funded therapy, at a cost of $36,000. With that amount provided through an individualized model, “I could run a full, full program” with 30 hours of therapy per week, Black said.

“Parents know how to do this.”

Black said she and other parents met with 25 of 28 BC Liberal MLAs Wednesday morning and were told the politicians “are not giving up.”

They are “hammering (the NDP) every day in the legislature” to reverse the decision, and have pledged to strategize over the weeks ahead while the house is not sitting, she said.

Surrey-White Rock MLA Trevor Halford on Wednesday introduced a petition signed by more than 19,000 people, calling for the minister to “press pause and end the clawback of individualized funding” for children with autism.

In a tweet, Halford said he will “ALWAYS fight back against the NDP’s attempts to claw back individualized funding for families of children with autism.”

Black said much like parents who challenged government more than two decades ago to have their autistic children’s applied behavioural analysis therapy ruled medically necessary, she and others are prepared to take the matter to court.

“We don’t belong in social services,” Black said.

“Out of frustration, we were driven into the courts, and it looks that way again.”

In 2001, a B.C. Supreme Court judge ruled government had discriminated against autistic children by “failing to make appropriate accommodation for their health care needs,” and directed that funding be provided, and parents be given the choice of what treatment to spend it on.

Government lost an appeal of the order, however, the Supreme Court of Canada later ruled in the province’s favour, concluding government was not obligated to fund the treatment.

The fight to have autism considered a health issue has continued ever since.

Black said it was “powerful” to hear kids with autism speak at Wednesday’s rally.

“It’s a message to the NDP government,” she said. “We’re not letting this happen, whatever way we have to do it. If (a lawsuit) is what needs to happen, then that’s what needs to happen.

“When I die, I’d love to know that there’s a law that protects my disabled son from shit like this.”

- with files from Kiernan Green
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The Black family – Brad, Roxanne, Ella and Reid. (Contributed photo)

Tracy Holmes

About the Author: Tracy Holmes

Tracy Holmes has been a reporter with Peace Arch News since 1997.
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