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Parents look for options to pay for autism therapy as Ford changes funding plan

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Joanne Schnurr, CTV Ottawa


Published Thursday, February 21, 2019 5:04PM EST


Last Updated Thursday, February 21, 2019 5:06PM EST

Parents of children with autism say they’re considering their options as the date for funding changes fast approaches.  Some say they will refinance their houses in order to continue therapy for their kids.  One Ottawa father says he will decide between leaving the country and going on social assistance.  Social Services Minister Lisa MacLeod was also talking options, suggesting to CTV News in an interview that parents could use government funding to buy technological devices such as an iPad to help their kids.  Today, Ottawa parents kept up their fight, protesting outside the office of the Minister of Training, Colleges and Universities, Merrilee Fullerton.

He listens well but 5-year-old Hassan El-Sarji isn’t able to respond.  Hassan is non-verbal but his father says 25 hours a week of intensive therapy, at $55 an hour, has helped tremendously.

“He’s come a long way,” says Ali El-Sarji, “He used to bite, scratch, hit every child in sight. He was uncontrollable.”

Hassan, who turns 6 in March, was diagnosed with autism when he was 2.  He started intensive behavioral intervention therapy, or IBI about eighteen months ago through a therapist based at CHEO.  But El-Sarji says his son’s therapist called recently to inform him that Hassan’s therapy plan ends April 22nd.  And El-Sarji has no idea how his son will fare under the Ford government’s new plan with just $5000 a year.

“I’m extremely worried,” he says, “I’ve thought about plan A,B,C,D and E; plans as extreme as selling my home and going abroad to find different services for him.”

They are options being considered by many parents as the funding options change and they face crippling debt to continue with the therapy they consider a life-line.

Christine Clayton’s 7-year-old son Miles has been receiving full therapy and says it has transformed their little boy.

“He couldn’t hold a pencil, couldn’t run, was still in diapers,” she says, describing life before therapy, “Now he’s potty-trained, he’s eating independently.  He tells me he loves me.  What parent doesn’t want that for their kids?”

She says her family is also considering their options, believing that their funding will be cut entirely, “There are options,” she says, “moving provinces, moving countries.  We don’t know.  We spent all Family Day in anxiety trying to figure it out.”

Stephanie Brousseau has a 4-year-old son in private therapy.  They are paying about $60,000 a year while they wait for Charles to be off the waitlist; he is currently about number 800.  Still, she adds, “I’d sooner wait another 2 or 3 years than have this thrown at me and have no help. I’m really hoping we’re able to get this changed.”

But today Social Services Minister Lisa MacLeod put that notion to rest.

“We’ve made a decision,” she told reporters at Queen’s Park today, “the decision stands.”

And earlier in the Question Period, MacLeod was reacting to a CTV interview where she suggested how parents could spend government money to help their kids.

“Last night on CTV News,” Andrea Horwath, the Leader of the Official Opposition asked, “the Minister responded by suggesting they could use the woefully inadequate government support to buy an iPad. Is that the Ford government’s idea of a treatment plan?  An iPad?

“Our plan is built on choice,” replied Minister Lisa MacLeod, “and if parents think that a technological aid will help advance their child, then I want to support them in doing that.”

Ali El-Sarji says his choices appear slim:  either sell his house or go on social assistance.  What he won’t do, he says, is cut his son’s therapy.

“He deserves a fighting chance.  He doesn’t deserve to be cut off,” he says

Also today, the NDP introduced a private members’ bill to ensure continuous support for children with developmental disabilities, including autism after they turn 18.

More protests are planned in coming days by parents. They are back at Minister Lisa MacLeod’s office Friday and plan a bigger show on Saturday.

 

 

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