Parents of children with autism hear Ontario program 'woefully broken'

“Woefully broken.”  Parents of children with autism say that's the message they heard this week from the Ford government about a system aimed at helping them.  The wait list for the Ontario Autism Program is getting longer with no solution in sight.

And while they wait, parents face crippling debt and crushing disappointment. The Ford government had campaigned on fixing the Ontario Autism Program.  Parents were hopeful but say that hope was short-lived as the crisis in the system worsens and they sell their homes to save their kids. 

Every day is a challenge with children living with autism.  For Amelia Spiers, it's double the love but double the difficulty, too.

“We're blessed with twins,” she says, “We planned for double everything.”

What they didn’t plan for was double therapy for 4 year olds Kael and Hayes, diagnosed two years ago with moderate to severe autism.  While they wait to get provincially-funded therapy under the Ontario Autism Program, they pay for private therapy out of pocket.  That therapy costs them $6400 a month.  Add on daycare at $1500 a month and that's a whopping $8000 bill, with no end in sight

“Here we are two years on wait list,” says Spiers, “and early intervention is key and here with are with no movement.”

Spiers was invited to a round table discussion earlier this week with MPP's from the Ford government.  She says the message from them was that the Ontario Autism Program isn't working.

“In fact, one of MPP’s, Jeremy Roberts, who I greatly admire, acknowledged it is woefully broken,” says Spiers.

The Ford government promised during the election campaign to invest more than $100 million towards fixing this system for kids living with autism.  The minister responsible, Lisa MacLeod, says one of her first moves was to spend more than half that, $62 million dollars towards families who needed it most.

“We are currently evaluating how best to invest the remaining $38 million dollars of our campaign commitment to autism services,” Minister MacLeod said in an email statement, “by consulting with parents and service providers through roundtable discussions held across the province, including a second roundtable in Ottawa scheduled in the near future.”

But parents say the numbers here in Ottawa don't reflect that.  In 2017, about 2082 children were on the wait list in our region for therapy.  That number has grown to more than 2,255.

Kerry Monaghan knows that first hand.  While her 5-year-old son Jack was approved for therapy, her 3-year-old daughter Charlotte is number 893 on the wait list. 

The family is paying about $4000 a month for private therapy for Charlotte. Monaghan says if the Ford government is spending money to fix this system, she'd love to know where.

“This community has no idea how that money being used,” says Monaghan, “There's been no announcement.  Lisa MacLeod hasn't stepped to a podium to tell us what's happening, and has not told us what the future of the program is.”

She says the future for their family and the 24-thousand others waiting is just as unclear. 

Parents have now launched a petition urging the provincial government to take a leadership role.   They acknowledge there is no easy fix, but hope at least to open the dialogue of what that "fix" might look like.