Once a week Jason and Jessica Dodge make the drive to Fergus where their 10-year-old son Jordan receives two to four hours of autism therapy at a government-approved centre.
The Dodges pay for this out of their own pocket. Roughly $500 a month for the past seven years.
“I’d say a third or more of our annual income goes to pay for autism-related things,” says Jason Dodge, a facilities manager at Hospice Wellington.
Jessica is a stay-at-home mom, in part because of two other children the couple has and in part because Jordan can only go to school for a few hours at a time.
The Dodges are among the thousands of Ontarians on wait lists waiting for government-funded assistance for their autistic children. One of thousands who pay for the therapy themselves because they know it helps and they know they can't afford to wait.
“We’ve been on some of the waiting lists for eight years,” Dodge says.
“At one point one of the agencies said they made an administrative error at the start and he wasn’t actually on the waitlist he was supposed to be on,” a list the Dodge’s believed they had been on for eight years.
“We get letters saying he’s too old and had been kicked off the wait lists for therapy he never got,” Dodge says.
The system is flawed, not the agencies providing it, and Dodge believes the new rules brings some relief to thousands of families who are either waiting for help or are paying for it out of their own pocket.
“There’s so many kids that are in need and so many families that are all trying to get into some of these big agencies where they don’t have to pay, but in the meantime, what do you do? You can’t just sit there. You have to do what you can for your kid.”
But he also realizes the changes won't work for everyone and under the new funding model many won't be able to continue with therapy that has been working for them.
Under the new rules, the Dodge family and thousands of others will soon be given access to funding and have say in where they spend it for their children.
There will be limits depending on the age of a child.
“Families currently on the waitlist for services can expect to receive their budgets within the next 18 months,” the government said in making the announcement.
A new independent agency will assist families in registering for the program, assess their funding eligibility, provide them with their childhood budgets and offer support to help them choose which services to purchase.
A survey by Autism Ontario showed that just over 66 per cent supported the changes.
Jordan, 10, was officially diagnosed shortly after he turned two.
There had been signs - delayed speech and motor skills - but nothing official until his speech hadn’t developed and behavioral indicators started to appear.
“They said ‘give it some time. He’s a boy and they generally take a bit longer to start walking,’” his father says.
“Then when he wasn’t talking it was the same thing, ‘he’s not quite two yet and boys take longer.’”
But Jason knew there were issues. His parents fostered special needs babies for 40 years. He knew the signs. Biting, a fascination with turning lights on and off, other such manifestations.
“Loud noises and certain tones of noises would put him in a frenzy,” Dodge says. “They still do.”
The Dodge’s thought once the diagnosis was official, help was just around the corner. The diagnosing doctor, an expert in the field from Hamilton, had told them how important early intervention was.
“None of the doors actually open until you have the full diagnosis, and once we got in we started our journey of waiting lists.”
They were initially told it would be a three-to-six month wait before Jordan was in a therapy program.
“Appointment after appointment. Different assessments. Different agencies,” he says. “You fill out the same paperwork time after time.”
Once Jordan was denied a spot in a program for non-verbal children because he could say three words.
“They say it’s a moderate impact to his life, which means he won’t be high functioning, but he will be able to function in some regards,” his father says.
Through a lot of work and therapy Jordan can talk and can generally put sentences together.
“But communication is a concern and it always has been,” Dodge says.
Not everyone is pleased with the changes and they won’t help everyone’s situation. Dodge knows this.
He also wants to point out that his support for the changes isn't politically motivated. It's about what's best for his son.
For some it will mean losing access to some expensive therapies that the government previously funded.
"The system," Dodge agrees, "is flawed and it's underfunded."
But for many of the estimated 23,000 children on waiting lists, it should mean quicker access to services.
“Long waitlists are one of the largest barriers to accessing diagnostic and required services,” Autism Ontario said in its official statement on the provincial changes.
But Autism Ontario warned that there is no “one-size-fits-all” model for the best way to apply the funding.
The Dodges are just glad there is some light at the end of the tunnel and that they can get some financial help for the services they currently use or get him more.
They realize that there isn’t enough money to help everyone with everything, and that ideally it would all be free and so would be the choice of where you received that therapy.
“The fact that we have the opportunity to offset some of our costs now or get him more makes us happy,” Dodge says.
“We’re at our limits, no question, and there’s families out there that I’m sure are spending more and as hard as its been for us it’s got to be devastating for some other families with no other means.
"It just gives us hope that peole will have some sort of relief. Is it enough? No. But it's something."
