Island parents of children on the autism spectrum question Ontario priorities

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ONTARIO – The provincial government earlier this year unveiled its proposed changes to the Ontario Autism Program and it has since released revised details after the response from parents and concerned stakeholders.

The outgoing program saw funding move from the province to nine regional service providers who kept lists of families needing financial support for their child’s therapy. When a child reached the top of the list, their therapy was fully-funded. 

The government later introduced a direct funding option, so the families could choose to spend their government dollars with private sector therapy organizations.

The changes announced this year shift the program exclusively to direct funding. There is currently a wait list of about 23,000 Ontarian children who have yet to receive any money to cover their programs, with 8,400 children currently receiving treatment. 

The Ford government pledged to eliminate the waiting list within 18 months by allowing families to apply to receive support money in the form of “childhood budgets.” The Ontario Ministry of Children, Community and Social Services lists eligible uses of the childhood budget on its website.

With direct funding, families have the choice to spend their allotment on whatever treatment makes the most sense for their child. However, the maximum amounts available for each child—$20,000 per year for children under the age of six and $5,000 per year for children up to age 18—will only partially cover the costs of most therapy programs.

The government will also double the funding for Ontario’s autism diagnostic hubs for two years, places where children receive autism diagnoses. They will form an independent intake agency to bring families into the program and support them through funding decisions.

Having an early diagnosis of autism spectrum disorder is crucial to successful treatment. Children should ideally begin intensive treatments as young as two years of age and as late as five. However, the process to get an official diagnosis can take as long as one year. As children age, most require less-intensive therapy and their treatment costs accordingly decrease.

When the changes were first announced in early February, many concerned citizens protested the overhaul that would disrupt the services their children had been receiving.

Critics also took strong issue with moves the Ford government made to stop moving children off the waitlist, effectively inflating the numbers of children waiting to receive treatment. They further said that the lower amounts of funding available to families would only partially fund most therapies and that the push to eliminate the waiting list would negatively impact the quality of treatment children receive.

Against the backlash, the Ford government later announced a six-month extension for kids currently receiving therapy and scrapped proposed tests that would allocate funding based on family income. They also pledged to consult parents on the changes and attempt to find more money for children who had more intensive needs. 

Mandy Case, formerly of Manitowaning and now living in the Ottawa Valley, has been working through Ontario’s autism program with her son Gavin for nine years since he received his diagnosis with ‘Level 3’ or severe autism at age two. They were on the funding wait list for two and a half years before relocating from Manitoulin and finally made it off the list four months after that.

“I feel for the parents of kids between the ages of one and six who will not get the full services that we benefited from. The new changes will actually be benefiting us; we’re getting more money now than we have received for the last few years,” said Ms. Case.

The family currently receives $2,500 per year for respite care and family relief funds, an amount that is doubling to $5,000 with the changes, and may be spent on more areas such as getting Gavin an iPad to help him communicate or helping to pay for speech therapy services.

Ms. Case noted that many treatments in the Manitoulin region can only be done in Sudbury, adding time and expense to a family’s considerations. When Gavin was in intensive therapy at an early age, Ms. Case did not go to work in order to support him. That’s a luxury many families cannot afford.

Gavin now attends school full-time in a special education class, but Ms. Case expressed concern about what will happen when he moves onto high school. There are no special education classes there and she said he still needs life skills training so he can become more independent.

“I feel bad for other kids with Down syndrome or other disabilities. Sometimes I feel like the autism family gets a lot of attention; I know there’s a lot more of us but there’s a lot more disabilities that need supports that aren’t getting them, too,” said Ms. Case.

For Manitowaning’s Robbie and Denise Shawana, autism is a condition they have navigated on their own, outside of Ontario’s funding program. Mr. Shawana said they were not made aware of the available funding when his son Kaelan Peltier was growing up. Their main focus has been on care services.

“There needs to be more spaces available as far as day programs and in-home care are concerned,” said Ms. Shawana. “Being able to have a respite bed at those locations would be extremely beneficial.”

“Overall, it feels like the government wants to have one big party. Legal weed, buck-a-beer, tailgate parties. Now they’re talking about changing the license plates—I’m sure Canadians and Ontarians have more important things to worry about than that,” Mr. Shawana said.

Kaelan is non-verbal and the only language supports he’s received have been with his parents and through teachers at his schools. 

“The teachers have been fantastic at the schools with teaching life skills, language and everyday things but there’s still only so much you can do. I’m grateful for the help we do have,” said Mr. Shawana. “I remember when he was going to school in Wiky. First Nations people, our funding is even lower compared to other schools, so the teachers did the best they could with the help they did have trying to find stuff online that wasn’t being supplied by the ministry.”

Pam McLaughlin of Gore Bay has a daughter named Molly who has severe autism. However, due to early intervention and intensive, “life-changing” therapies from an early age, Molly can now talk, read and write.

“I am so disheartened and upset by Doug Ford’s drastic and cruel cuts to the Autism programs and to school supports. It’s devastating to families in Ontario who struggle with a loved one on the Autism Spectrum. Access to life-changing therapies and supports is a human right,” said Ms. McLaughlin, before echoing Mr. Shawana’s concerns that the government was more focused on frivolous measures than important therapy services for children with special needs.

“There is nothing fiscally responsible about what the Conservatives are doing—they don’t care about our children’s future, they are passing the buck. These cuts will hurt children and they will not be able to reach their full potential,” said Ms. McLaughlin, adding that there will be impacts for decades as these children become adults.

Gore Bay’s Terri Elgie, who worked as an instructor therapist in the autism intervention program until 2010, said she was concerned about the decision to make these changes.

“Why break a publicly-funded model that has been proven effective, to replace it with an unknown model with far less funding and unequal access.” she said. “In rural areas, it’s going to be real hard to find trained staff.”

She says the shift in delivery models will cause stress on families who have to hire, train and pay care staff. When she worked in intensive therapy, a psychologist oversaw the program that ran for 20 to 30 hours per week for each child. That program had cost about $80,000 per year.

“Parents of young children could receive up to a maximum of $140,000 over their lifetime until they’re 18. That’s quite a concern. Will the decreased hours of therapy even be effective to help them reach their potential? I don’t know about that,” said Ms. Elgie.

However, she did say that the Ford government’s goal of diagnosing all kids in a reasonable time frame is a good starting point—although it needs support through later years to be effective.

“I had the pleasure of working with these great kids diagnosed with severe autism for six years. Strong support gives all kids the tools they need to reach their full potential. It’s just the right thing to do,” said Ms. Elgie.