Some families will get help for the first time. Others are afraid to lose badly needed supports
Changes to how the B.C. government supports children with disabilities are provoking mixed reactions among parents — relief for those who will receive funding for the first time, but anxiety, fear and uncertainty for those who will see their children’s support reduced.
“We’re very happy to hear that kids of all types of disabilities are now getting funding, which they have not before this announcement,” said Camille Ramos, who, along with Sue Tang, co-founded the Autism Family Friends organization. “But we are … a little worried to say [it’s] at the expense of our autistic kids.”
The changes, announced by the government earlier this month, replace the existing Autism Funding Program with two new programs to support children with many types of disabilities. It represents an investment of $475 million over three years and means thousands more children and their families will gain access to needed supports, the government said in a news release.
It also means families of children with certain types of autism could lose thousands of dollars a year.
‘Not disabled enough’
Ramos is among them. Her son, who has autism, qualifies for $22,000 this year, which is the maximum amount available for children aged three to five. Under the current system, he’d still get $6,000 a year when he turns six.
But Ramos says she’s not sure he’ll qualify for any support when the new rules come in next year, given the type of autism he has and that part of the support going forward will be income-tested.
“He is no longer going to qualify according to the new model structure because he might be deemed not disabled enough according to the new criteria. And then also our household income might not qualify for the supplement.”
Ramos is referring to two new programs that will take effect in 2027. Children with a wider range of disabilities will automatically qualify for the B.C. Children and Youth Disability Benefit. The funding will be either $6,500 or $17,000 per year, depending on the level of need.
Tang and Ramos’s children do not have a classification of autism that automatically qualifies. There will be another pathway that allows children to qualify on the basis of a needs-based review. But because the government has not published the criteria, Tang, Ramos and many others don’t know if their children will qualify.
WATCH | Parents worry new model will cut funding for some kids:
After facing heavy criticism from parents over previous attempts to revise the funding model for children on the autism spectrum, the province promised families they could keep their individualized support funding. Now, four years later, the province has unveiled a new funding model. As the CBC’s Shivani Joshi reports, some parents are worried their children could see their funding cut back.
The new program also includes a supplement of up to $6,000 a year, which will be administered through the Canada Revenue Agency and income-tested, meaning lower-income households will receive more.
The current funding has allowed Tang’s daughter to have speech and language therapy, which she says has been an essential support — and costs about $400 a week.
Other families in their network use the funding for things like play therapy or family counselling, which help alleviate the pressure of parenting a child with special needs, Tang said.
‘Overwhelming relief and happiness’
On the other side of the issue is Tara Zyla, a mother to a three-year-old daughter with Down syndrome in the Comox Valley. She serves on the board of the Vancouver Island Down Syndrome Society and is one of the thousands of parents who will see their children get significant support for the first time.
“There were a lot of tears … of happiness, and not just from me, from so many families and advocates that I’m connected to,” she said. “Just overwhelming relief and happiness.”
Currently, families like hers must go to a regional centre to get publicly funded therapy or support, but in smaller or remote communities, “it can be very difficult to recruit and retain the professional therapy staff,” Zyla explained.
There are fully staffed private providers, but only for families who can afford them, she added.
“Now, I as a parent have a choice. I have an option if my local child development centre is having staffing flux … I can still get my daughter the therapy services she requires. She doesn’t have to have years-long breaks in her physiotherapy.”
‘The current system isn’t working’
The changes are the result of years of consultation with thousands of people, Jodie Wickens, the minister responsible for children and youth with support needs, said in a statement.
“We heard clearly that the current system isn’t working for most children. Families told us repeatedly they wanted 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 support 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 Geeroms has 14-year-old twins who both have autism. Under the new model, her family is likely to lose support.
Her own reaction to the changes has been mixed, she said.
“I hold, like, two things alongside each other. Like, I am feeling a lot of joy and vindication for the families that are finally getting support,” she said.
“And then I hold alongside that my own grief about how this might affect my family and other families. And I totally welcome creating a bigger tent where more children have their needs met. And I hope that could be done without sacrificing some children’s needs.”