Families of children with autism say they're stretched thin by provincial funding changes

Families of children with autism gathered for an emotional town hall meeting in Kitchener on Sunday. Many said they have been under extreme stress since changes to the Ontario Autism Program were announced in early February.

Changes to Ontario Autism Program were announced in early February

Mark Dineen, whose six-year-old son Andrew has autism, said changes to the Ontario Autism Program will make things harder for thousands of families across the province. (Robin De Angelis/CBC)

It was a packed room at a town hall in Kitchener on Sunday, as families gathered to share their stories and voice concerns about changes to the Ontario Autism Program.

The event was organized by NDP MPPs Laura Mae Lindo and Catherine Fife, who are calling on the provincial government to halt changes to the program that will take effect in April.

Under the new program, families will receive funding for therapy and other supports based on age and household income. Children under the age of five will receive up to $20,000 in funding per year, while those older than five will get a maximum of $5,000 each year.

Parents were emotional as they shared their stories at the town hall.

Many said they have been under extreme stress since the changes were announced by Minister for Children, Community and Social Services Lisa McLeod in early February.

"This change is not acceptable, it's not helping. It's making things much worse for thousands of families," said Mark Dineen, whose six-year-old son Andrew has autism.

Dineen said his family has had to deal with the daily stress of having a child with high needs, as well as the financial stress of paying for therapy. Now, he's worried things will only get worse under the new provincial program.

He said he may have to sell his home so his son can continue to receive the support he needs.

"My family is being walked out of the middle class and our retirement savings is already gone and, you know, the last thing that we own of any value is going to have to be sold," he said.

"Our family will have no financial future in order to give our son a life in the future."

Sheila Ims said she doesn't know what her family will do without the funding they received under the old program. Ims has custody of her nine-year-old granddaughter, who will only get $5,000 for therapy under the new program.

Sheila Ims says her nine-year-old granddaughter won't be able to reach her full potential without the funding for autism therapy and services she received under the old provincial program.

"The services that she has received have given her the opportunity to be more socially acceptable," she said.

"I do believe that if we continue to receive with the same amount of funding that we've been able to receive up until now, that she will be able to integrate into society and be able to care for herself."

Dr. Janet McLaughlin, an autism researcher and professor at Wilfrid Laurier University, says families of children with autism do better when they are fully supported.

"What our research showed was that parents who were in the old Ontario Autism Program, receiving the amount of support they needed, they themselves were having better mental and physical health outcomes, because their children were well supported," she said.

Dr. Janet McLaughlin is an autism researcher and associate professor at Wilfrid Laurier University, and the mother of a son with autism. (Robin De Angelis/CBC)

McLaughlin, whose son Sebastian also has autism, said the changes to the program will cause a "ripple effect" of stress and other negative effects for families.

"In terms of the financial, health and social education implications, it really is a backwards decision in every possible vantage point."

Despite the outcry from families and their supporters, the provincial government has made no move to walk back any of the changes to the autism program.

Sunday's town hall was held in Progressive Conservative MPP Amy Fee's riding in Kitchener. Fee is the parliamentary assistant to the Minister of Children, Community and Social Services and has two children with autism.

Fee did not respond to a request for comment, but said in a previous interview with CBC that her government intends to stick for the changes for the next four years.