'Not a truly needs-based program': Autism program changes concern northern families

A northern Ontario mother of a child with autism has concerns with the province's latest attempt to reform its autism program.

The government on Wednesday announced further changes to the program, which began with a much maligned revamp in its first year of office that prompted a subsequent reversal.

Starting in March, the province said the program will provide services based on each child's individual needs.

Danielle Pannanen, who is on the leadership team of the Northern Autism Families advocacy group and has a 12-year-old son with autism, said she is particularly disappointed that the province will put caps on eligible funding, based on the age of the child.

"Autism has very different presentations in each child," she said on Thursday. "You can still be in the severe end when you're older, right into adulthood. You might still need full-time therapy. It shouldn't matter whether you're under the age of six or not, but with this new program they're still very much discriminating when it comes to age."

"It's not a truly needs-based program if we have those caps, especially when they're based solely on the age of the child."

Children under the age of nine are eligible for a maximum of $65,000 per year for services, even though the cost of the most intense therapies can exceed $100,000. But for those between the ages of 15 and 19, the maximum amount of funding is just under $32,000.

"The parents will have to make that decision to pull them out of therapy or to try and pay for it themselves," she said, adding it could cost $55 per hour or higher in some areas. "It's just not feasible for some families. You're going to see the gaps in their therapy and then you're going to see regression."

"Having to come out of therapy before they're ready, it can be a devastating change to children."

The changes to the program are initially being rolled out for just 600 children, which will feature a period for those families to provide feedback to the government, with an expansion to 8,000 families a year later.

Pannanen said that 600 figure represents just over one per cent of the 43,000 children in Ontario waiting for services.

"We are looking at probably quite a while before we start seeing any children getting meaningful therapy, aside from that 600," she said.

Being able to access services is a challenge in some parts of the province, she added.

"Even if they changed the program tomorrow and everything was exactly the way it needed to be for the kids to get what they need, we still wouldn't have the capacity for that up here," Pannanen said.

"Ideally, first we need to build therapeutic capacity, especially in northwestern Ontario and the rural areas."

Paananen said one positive to the announcement is increased regulation of applied behaviour analysis therapy, which is something the Northern Autism Families group has advocated for.