The new Ontario Autism Program (OAP) was intended to improve wait times to get kids with Autism Spectrum Disorderthe intensive therapy they need to thrive. 

But several Ottawa parents tell CTV news it has only added to the wait list and added to a crippling financial burden on them. The Ontario government recently brought in a new program that promised to fund therapy for all children living with autism under age 18.

It is something that parents in Ontario have long pushed for.

But they didn't anticipate what’s happening as a result of that.

2-year-old Charlotte Monaghan was diagnosed last summer with Autism Spectrum Disorder.

Her 4-year-old brother Jack was diagnosed a year earlier.  He has just been approved for therapy that will be paid for under the Ontario Autism Program.

“We waited nearly 18 months to get that funding and hopefully it's around the corner,” says his mother, Kerry Monaghan, “the paperwork is all filled out.”

Charlotte, on the other hand, has a bit of a wait.

“We've received word that she's 955 on the list.”

That's right: nearly 1000 children on CHEO's wait list before Charlotte, with no idea what that means. In the meantime, the kids’ parents have been paying for private therapy, which Monaghan says is, of course, a good investment in their children’s futures.

“When it comes to autism, every second counts,” says Monaghan.

But it is a costly investment. Privately-funded therapy for Jack costs $3000 a month; $2500 a month for Charlotte. Monaghan says when you add in the $1200 a month for speech and occupational therapy that amounts to $67-hundred dollars a month.

“We're extremely lucky we are able to "afford" therapy,” says Monaghan, “and I say afford in quotation marks, because we really can't, but we've been able to make it happen, ” delaying building a home, vacations and borrowing money.

The research has proven that early intervention with children with Autism Spectrum Disorder is critical and can change their lives.  So parents are encouraged to get an early diagnosis and get on CHEO’s wait list for funding through the Ministry of Children and Youth Services as quickly as possible.  But then it becomes a game of hurry up and wait.

 After years of protests, the Ontario government last summer agreed to fund therapy for all children with autism up to 18 years of age, “to allow children with autism spectrum disorder access to timely and effective services,” according to the Ministry’s website.

It has been anything but for parents like Amelia Spiers.  Her three year old twins have both been diagnosed with moderate to severe autism.  They, too, pay for private therapy with no idea when their kids will make it to the top of that wait list.

That therapy costs $5600/month for the twins.  Add daycare to that, and they're up to $7000 a month in expenses.

“We're blessed with twins,” says Amelia Spiers, the boys’ mother, “We planned for everything double: double daycare, double everything.  But we didn't plan for $7000 a month.”

Both mothers say they want to bring awareness to the issue for families that can’t pay for private therapy.

“Lots of parents have no choice but to fall behind, fall through the cracks,” says Amelia Spiers, “Their formative years pass by and my heart breaks for those families.”

“We've been pitched the idea that the wait times will be reduced but there is no evidence of how that's going to be done,” says Kerry Monaghan, “and what back up plan is for these kids rotting away on a waiting list.”

CHEO says it agrees that too many kids are waiting too long.  In a statement, Anne Huot, the Vice-President of Child Development and Community Services with CHEO said, “We want to do everything we can to fix that. We’re advocating for families. And we’re working with the Ministry of Children and Youth Services to improve access to services as quickly as we can through the new Ontario Autism Program, which recently started up.”

The Ministry says it’s invested half a billion dollars over five years to improve services to these children. 

In a statement, the Ministry said, “It is our top priority to address wait times in the new program. Families deserve to know when their child can expect services, and we are starting to collect data that will help us manage wait times. We will continue monitoring wait times, while also expanding services so more children and youth with autism can receive the supports they need.

For families waiting for services in Ottawa, and across Ontario, we have introduced Family Support Workers. They are responsible for developing a Family Service Plan that connects families to parent/caregiver services and training. Families also have access to occupational therapy, physiotherapy and speech-language therapy services through the Children’s Hospital of Eastern Ontario (CHEO).

Families can also contact their local provider, which is CHEO in Ottawa. Local providers share the date that their child was referred and any local factors that can influence wait-times.”