Parents say Ontario's autism service plan falls far short

Families of children with autism say changes to services introduced by the provincial government fall short financially and don't address the chronic shortage of therapy providers.

On Wednesday, NepeanMPP Lisa MacLeod announced the Ontario government would overhaul autism services in an effort to clear the province-wide backlog within 18 months.

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Some 23,000 children diagnosed with autism spectrum disorders are currently waiting for government-funded treatment in Ontario, while just 8,400 currently receive therapy through the program.

Instead of funding regional service providers to deliver behavioural intervention services, the government has proposed giving the money directly to parents.

MacLeod, theminister of children, community and social services, told CBC's All In A Day her government is choosing to help the most people possible.

"I, in good conscience, could not continue with a program that was 100 per cent funded for only 25 per cent of the children," she said.

'No capacity' in Ontario

The announcementmeans families will get up to $20,000 a year, to a limit of $140,000, for kids who begin treatment before age six.

But parents with the Ontario Autism Coalition saidhaving money to spend is no good if there is no one to provide the therapies their children require.

"There is no capacity in Ontario," scoffed Kerry Monaghan, a Barrhaven mother to two young children on the autism spectrum.

With Monaghan's five-year old son Jack, the family languished on a waiting list for 20 months after his diagnosis before he was helped by the Ontario Autism Program.

Three-year-old-Charlotte started waiting 19 months ago, and is still waiting.

"If you go to buy private services, you are met with wait lists," Monaghan said.

Demonstration planned

She and other members of the coalition are planning on demonstrating outside MacLeod's constituency office on Fallowfield Road through the Friday noon hour.

Monaghan's neighbour Taylor Davies and her lanky eight-year old son Grayson are in the same situation.

What's happened now is if you took every world hunger organization, abolished them and handed every starving child a sandwich and said, 'we're done.'- Kerry Monaghan

"We are number 1974 on the wait list for services," she said grimly.

Davies said she also worries most families won't be able to afford to top up the payments to pay for the additional hours that are clinically recommended for their children.

Intensive therapies can cost between $50,000 and $70,000 a year.

Monaghan says the government cash won't be enough for parentsand questions what will happen to existing programs.

"What's happened now is if you took every world hunger organization, abolished them and handed every starving child a sandwich and said, 'we're done,'" she said.

Monaghan says the new delivery model will mean the behavioural caregivers of tomorrow need to be found and trained for the role.

"You need to be going into high schools encouraging students to take behaviour sciences, providing grants and bursaries," she said, because the work isn't of a kind that people can do without advanced training.

Changes possible at CHEO

It's not yet clear what the changes mean for a regional service provider like CHEO.

In 2016, the Ministry of Children and Youth Services announced a call to develop five regional hubs in Ontario in order to increase access to timely assessment of Autism Spectrum Disorders.

Ottawa's children's hospital became the lead organization for the east region, with partner organizations across eastern Ontario.

On All in a Day, MacLeod said the province is doubling its investment in autism diagnostic hubs like CHEO.

But yesterday, CHEO President and Chief Executive Officer Alex Munter and Anne Huot, the VP of Child Development, sent a letter to the more than 100 hospital staff providing behaviour services acknowledging that while the government'sdirect-pay model will mean changes for the hospital, it isn't clear yet what those changes will be.

"We will do our due diligence and aim for a solution that is evidence-based. And we will consult with families, staff and the government as part of this work," wrote the administrators.

MacLeod defended her plan, saying "tough decisions have to be made" while acknowledging not everyone will be happy.

"I understand where they're coming from. I'm a parent too. I fully support them in their advocacy for their children. That said, we have a program that is in place that I've increased funding for. I need to make sure every child gets some support."