Changes to BC’s autism, disability funding raise questions for parents
Changes to how the BC government supports children with disabilities are causing mixed reactions among parents — relief for those who will receive funding for the first time, but worry, fear and uncertainty for those who will see their children’s support reduced.
“We are very pleased to hear that children with all types of disabilities are now receiving funding, which was not the case before this announcement,” said Camille Ramos, who co-founded the organization Autism Family Friends with Sue Tang. “But we’re … a little concerned, saying (this) is at the expense of our autistic children.”
The changes, announced by the government earlier this month, replace the existing autism funding program with two new programs to support children with a range of disabilities. The government said in a news release that this represents a $475 million investment over three years and means thousands of children and their families will receive much-needed support.
This also means that families of children with some types of autism may lose thousands of dollars per year.
‘Not disabled enough’
Ramos is one of them. Her son, who has autism, is entitled to $22,000 this year, the maximum amount available to children aged three to five. Under the current arrangement, he will still receive $6,000 per year when he turns six years old.
But Ramos says she’s not sure she’ll be eligible for any support when the new rules come in next year, because she has a form of autism and part of the support going forward will be income-tested.
“He will no longer qualify according to the new model framework because he may not be considered sufficiently disabled according to the new criteria. And then our household income may also not qualify for the supplement.”
Ramos is referring to two new programs that will take effect in 2027. Children with extensive disabilities will automatically qualify for the BC Children and Youth Disability Benefit. Depending on the level of need, funding will be either $6,500 or $17,000 per year.
Tang and Ramos’ children do not have any classification for autism. automatically qualifies. There will be another pathway that will allow children to qualify based on need-based review. But because the government hasn’t published the criteria, Tang, Ramos and many others don’t know whether their children will qualify.
After facing heavy criticism from parents over previous attempts to modify the funding model for children on the autism spectrum, the province promised families they could keep their individual support funding. Now, four years later, the province has unveiled a new funding model. As CBC’s Shivani Joshi reports, some parents are worried that their children could see their funding cut.
The new program also includes a supplement of up to $6,000 per year, which will be administered through the Canada Revenue Agency and will be income-tested, meaning lower-income families will receive more.
Current funding has allowed Tang’s daughter to receive speech and language therapy, which she says is a needed help — and costs about $400 a week.
Tang said other families in her network use the funding for things like play therapy or family counseling, which help ease the pressure of parenting a child with special needs.
‘Immense relief and joy’
On the other side of the issue is Tara Zyla, mother of a three-year-old daughter with Down syndrome in Comox Valley. She serves on the board of the Vancouver Island Down Syndrome Society and is one of thousands of parents who will see their children receive vital support for the first time.
“There were a lot of tears … of joy, and not just from me, but from many of the families and advocates that I’m connected with,” she said. “Just tremendous relief and happiness.”
Currently, families like hers have to go to a regional center to receive publicly funded therapy or support, but in small or remote communities, “recruiting and retaining professional medical staff can be very difficult,” Zyla explained.
“There are fully staffed private providers, but only for families who can afford them,” he said.
“Now, as a parent I have a choice. If my local child development center is understaffed I have a choice… I can still get my daughter the therapy services she needs. She doesn’t have to take years-long breaks from her physical therapy.”
‘The current system is not working’
Jody Wickens, minister responsible for children and young people with support needs, said in a statement the changes are the result of years of consultation with thousands of people.
“We have heard clearly that the current system is not working for most children. Families have told us repeatedly that they want better access to the right supports, more choice and flexibility, and a system with sustained investment and stronger accountability,” she said.
“The vast majority of families currently receiving funding will continue to receive direct financial assistance through one or both of our new direct funding programs. And one-third of families currently receiving funding will receive more under the new system than they do today.”
Vancouver parent Anna Giromes has 14-year-old twins who both have autism. Under the new model, his family is likely to lose support.
He said his own reaction to the changes has been mixed.
“I put the two things together. Like, I feel so happy and supportive of the families who are finally getting support,” she said.
“And then I think about my grief as well as what impact this might have on my family and other families. And I absolutely welcome building a bigger tent where the needs of more children can be met. And I hope that can be done without sacrificing the needs of some children.”
