A Richmond parent is sounding the alarm over changes to the current autism funding model – and her concerns are echoed by 34 autism-related organizations, including the advocacy non-profit Autism BC.
The province is creating 40 hubs across B.C. where children with a variety of special needs including autism will be offered services.
The hubs will replace the current system in which parents choose what therapies their children receive, using government funding.
This new system will take away parents’ ability to choose their children’s service providers, many of which are private companies, explained Richmond parent Kaye Banez, whose son Lazarus is autistic.
Details on how the new hub system will roll out have been sparse, she said, adding she’s still unclear how it will work although she’s attended all possible information sessions.
The current funding system allows parents to “create the best teams for their children” with workers who align with a family’s values and who, over time, build relationships and trust with the children, Banez said.
She said she’s worried the hubs, expected to be operational by 2025, will be too generalized, something echoed in a letter to the Ministry of Children and Family Development (MCFD) by the 34 organizations.
“(The new system) could be very, very traumatic for children and families,” she added.
At the information sessions, Banez said she didn’t get any “real answers” to questions parents posed to the ministry.
Autism BC and the Pacific Autism Family Network, located in Richmond, are among the organizations who signed on to a letter opposing the changes. Many of the organizations represent the autistic community in specific areas of B.C. like Autism Kamloops, some are private service providers, like Stepping Stones Therapy Inc. & Aspire Preschool.
Besides a lack of information and consultation on the new model, these organizations say children with autism would lose out on individualized support.
“Families are deeply concerned that they will receive generic services at a hub that lacks this depth of knowledge about their child’s specific disability,” reads the letter from the organization to the ministry.
Banez pointed out there are a lot of ethnic families in Richmond and she questions whether service providers at these hubs will be able to communicate with them.
On Wednesday, parents of children with autism and service providers were in Victoria at the legislature to show their opposition to the new funding model.
MLA declines to answer questions about autism funding
A request to speak to the Minister of Children and Family Development, Mitzi Dean, went unanswered, with communications staff sending a statement on her behalf.
Dean said, in her statement, “the current system is not working” and the changes have been “informed by calls for change from many families, advocates, and service providers.”
She said the new system will be “more responsive, flexible and needs-based.”
Similarly, questions posed to Richmond-Steveston MLA Kelly Greene elicited no immediate answers.
After a discussion about contracts that had been awarded for the Massey crossing project, Greene said she couldn’t comment on the new autism funding issue without setting up an interview specifically on that topic.
“I’d be happy to schedule some time to talk about that – I’m prepared to talk about the Massey crossing right now,” Greene told the News Wednesday afternoon, while the autism protest was underway outside the legislature where she was working.
When asked if she had been contacted by constituents on the issue, she cited confidentiality reasons for not revealing what issues have been raised with her.
“Everybody who writes to MLA offices can expect to have a response, but obviously those responses would be confidential – I wouldn’t share those with you,” Greene said.
And when asked if she had seen the demonstration outside the legislature, she said “sorry, I’ve been at my desk almost all day, or in the chamber, I haven’t got anything for you there.”
MCFD, in its statement to the News, said it has been “informed by” reports from the Representative for Children and Youth and the all-party Select Standing Committee on Children and Youth when planning these changes.
However, the children and youth representative, Jennifer Charlesworth, wrote to MCFD saying, she agrees children should be given support when needed – as opposed to just based on a diagnosis.
But the way the new system is being rolled out has pitted parents of autistic children, whose individual funding will be pulled back, against other parents who will get more support.
While Charlesworth expresses her support in principle to overhaul the system, she points out autism advocates and parents are concerned about losing individualized funding, while parents of children with other needs say they deserve equity in support and services.
“Better and ongoing communication and engagement by MCFD with parents and advocates of all children with support needs is needed to ease those concerns,” she added.
Furthermore, Charlesworth questioned whether any more funding would be put into the system overall, especially as the government plans to serve 8,300 more children in the new system.
She said in her letter that “the ministry does not have the resources to properly serve the children currently on its caseload.”
Parents choose therapies for children under current model
Therapies for children with autism are in three broad categories: applied behavioural analysis (ABA) therapy, speech therapy and specialized services like martial arts and therapeutic horseback riding.
Currently, Banez has put her son in an online school and the government-allocated funding is directed at things he is either good at or has challenges in, for example, last year, he was getting specialized math tutoring and this year they will focus on speech therapy.
“All of the things that really give us a hope for a brighter future for him – we’re developing his strong skills and also working on some of the challenges - those are things we’re going to lose,” Banez said.
Not only will families lose out on relationships that have been built up over the years with service providers, Banez added, the businesses that have developed over the years will be gone, including speech and language pathologists, occupational therapists and other specialized businesses that work with kids with autism.
“We’ve got all these business owners – and many are women business owners – whose livelihood is under attack,” Banez said.