A recently announced change for how children with autism access provincially funded support has parents and advocacy groups scrambling for answers.
Elena Lawson’s six-year-old son was diagnosed with autism spectrum disorder in 2018. Since then, he has received individualized funding from the Ministry of Children and Family Development that has made a world of difference in his behaviour.
Lawson’s son works with behavioural interventionists at home twice a week. When he was younger, he worked with speech pathologists twice a week as well as a physiotherapist to work on his motor skills.
“It’s amazing. He went from somewhat non-verbal to now non-stop talking. He’ll tell you a story. He’s so smart. Because of the supports we’ve gotten so far, he plays with his friends and now has friends,” Lawson said.
Under the current program, families with children under six can receive up to $22,000 per year and up to $6,000 a year for children over six.
But a newly proposed hub model to support children with disabilities will see autism funding phased out by 2025 and replaced with community hubs where families can access needs-based support. Families currently receiving individualized funding will be migrated over to the hub system by 2025.
The move has been criticized widely by the autism community and is seen as a clawback of existing supports. But the province has said the new model will continue to provide care for families in their own communities and expand access to thousands of children who currently receive no support.
The ministry said the hub network will support approximately 8,300 more children with diverse conditions such as fetal alcohol syndrome, Down Syndrome and brain injuries.
When Lawson heard that individualized funding for children with autism would be phased out under the province’s new hub care model, she wrote Mitzi Dean, her local MLA and Minister of Children and Family Development, asking to speak about how crucial individualized funding for autism is.
Those inquiries have not been returned, as of Nov. 9.
“I don’t think the hubs are going to work for many parents. Our team comes into our home and they’re a team that we’ve had since 2018. My son has built trust with them, he considers them his friends. To then go to a hub where I don’t know who will determine how much time he gets, what services he gets, who he gets, is just not acceptable.”
Lawson’s concerns were echoed in a joint letter signed by eight B.C. autism support organizations calling for meaningful consultation from the ministry with detailed information on how the new model will work.
AutismBC president Kaye Banez spoke to Black Press Media after an information session with the ministry. Banez said it was “certainly not a consultation” and “hardly informative.”
Banez was unimpressed with the ministry’s responses to questions from autism support organizations and experts. The ministry will be hosting a series of information sessions for families and stakeholders where more details around the program will be disclosed.
“There is no faith that this new framework is actually going to work because there has been no transparency or consultation that has happened prior and we don’t see it happening now… How can we have faith in this ministry when we’ve been shut out?”
Moving forward, Banez is calling on the government to provide detailed, clear answers on how the hub model will work and how existing services for children and families will be impacted.
Dean declined an interview request from Black Press, however, the ministry said in a statement it has “more work to do” and will “continue to engage with families, service providers and community agencies”.
The ministry will hold information sessions for families and service providers from Nov. 29 to early December. Ministry staff will be present to answer technical questions.
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