Windsor

Parents vent frustration about Ontario Autism Program waitlist at Windsor roundtable

At a roundtable about the Ontario Autism Program Thursday, parents shared what it's like to live while waiting years for services.

Some parents have children who have been waiting for years

Megan Ball Rigden says her two-and-a-half year old son can't say 'mama' yet. (Submitted by Megan Ball Rigden)

Parents with children who have autism had a chance to express their frustrations to the Ministry of Children, Community and Social Services at a roundtable Thursday about long waits for services.

Minister Lisa MacLeod sent her parliamentary assistant, Amy Fee, MPP for Kitchener South-Hespeler, to Windsor to hear from parents.

Megan Ball Rigden is a parent who has two children with autism. She said it was a cathartic experience for many to finally have a chance to share their story with the government.

"I think a lot of us did have some axes to grind, I suppose, to make sure that our concerns are being heard in Toronto," said Ball Rigden

Megan Ball Rigden says the wait list has stalled for three months. (Katerina Georgieva/CBC)

Ball Rigden pointed to the Ontario Autism Program, which she says is only now accepting kids who were referred back in December of 2016.

However, she said, the wait list hasn't moved for three months. So even if a child had a referral date of July 2017, it could be a much longer wait than just seven months.

April Paré is in the same boat, whose daughter Adyson Paré has been waiting for two and a half years.

"If my child had been born not able to walk, she would have received physical therapy immediately," she said.

"But because my child's disability isn't seen, it feels to me, like it's almost not acknowledged."

April Paré's daughter, Adyson Paré, is attending school but it's difficult for her to learn in the classroom environment. (Submitted by April Paré)

The service Paré hopes her daughter will receive is applied behaviour analysis, which her daughter got before through a different program until she became ineligible.

Paré said Adyson isn't learning in school because she struggles with some behaviour issues.

Her frustration lies beyond the program's long wait list, saying schools should have these services incorporated for kids who need them.

"I feel like our school system just isn't prepared enough and well-equipped to handle the behaviours that come from these kids sometimes," said Paré.

Next steps

As a mother of two children with autism, Fee said she understands these frustrations.

According to her, there are 40,000 children with autism in the province, but only 8,000 are receiving services through the program.

Amy Fee has been in roundtables across the province, hearing from parents who have kids on the autism spectrum. (Amy Fee for Kitchener South-Hespeler/Facebook)

"We know that to me and to any parent, that's just not right. We need to make sure we're supporting children when they need these services," said Fee.

"The minister has been looking at the whole program, just to see how we can make sure that it's best supporting children."

Fee said the next steps will be to bring concerns from this roundtable, and others across the province, back to Minister MacLeod to inform the next steps for the program.

However, Ball Rigden and Paré aren't optimistic that any positive change will take place soon.

"Given the past history of the government and what they've tried to do to the autism programs in the past, I don't give very much hope to it," said Paré.

About the Author

Flora Pan

Reporter/Editor

Flora Pan is a multimedia journalist based in southern Ontario. She currently works out of Windsor. You can reach her at flora.pan@cbc.ca or on Twitter @FloraTPan.

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