Windsor

Autism parents 'exhausted' with long waits for Ontario's new program

Jessica Szucki's three young children with autism have waited nearly 12 months to take advantage of the province's new program - and they're still waiting.

Province is collecting data that will help them manage wait times

Three-year-old Lennon has been diagnosed with mild autism and receives in-home support once a week. (Jason Viau/CBC)

Jessica Szucki's three young children with autism have waited nearly 12 months to take advantage of the province's new program — and they're still waiting.

"It's exhausting," said Szucki. "You never know where the next therapy is going to come from."

It's a whole lot of hurry up and wait.- Jessica Szucki, mother of three boys with autism

Right now, Szucki — a single mother —pays out of pocket for most of her children's autism support. When all three of her boys required specialized therapy, it totalled $450 per month.

"I go without, so they have [what they need]," said Szucki.

Jessica Szucki has been waiting nearly 12 months for a new government program to help her three young boys with autism. 0:36

With Ontario's new program, announced last June, she's hoping most of those expenses will be covered. But she has no idea when that will happen.

"That's one of the biggest things that autism parents have; it's a whole lot of hurry up and wait," said Szucki.

Her three children Lennon, 3, Cooper, 5, and Dryden, 6, are all at different places on the autism spectrum. Szucki's oldest is non-verbal and recently potty trained, with her youngest being much more social with a great memory.

Jessica Szucki and her three boys Lennon, left, Cooper, centre, and Dryden, right. (Jessica Szucki)

Playing the waiting game

She worries how this waiting has affected her children's development.

"We all know that early intervention is the best thing for our kids," said Szucki.

Ontario's new program offers families' services that are more flexible and individualized to children's needs. The Ministry of Children and Youth Services won't say when these wait times will be reduced, however it's their "top priority."

Ont. trying to manage wait times

"Families deserve to know when their children can expect services, and we are collecting data that will help us manage wait times," said ministry spokesperson Genevieve Oger in an email to CBC News. "We will continue monitoring wait times, while also expanding services so more children and youth with autism can receive the supports they need."

Families at the top of the list are ones that registered in August, 2016, meaning the province is about two years behind.

Autism plans from the opposition

Ontario's Progressive Conservatives don't yet have an autism plan. The party said it will be releasing those details in the "coming days."

"We are rolling out our plan for the people piece by piece and our party recognizes the importance of supporting the autism community. The Ontario PC Party is fully committed to working with them to ensure they are no longer ignored by Queen's Park," said Melanie Paradis, spokesperson for Doug Ford.

Windsor West NDP MPP Lisa Gretzky said the Liberals autism plan isn't good enough. (Jason Viau/CBC)

As for the NDP, they're promising to put the resources in place to eliminate wait lists. If they form government in June, the New Democrats plan to make it a seamless transition for children with autism turning 18. Currently, they are cut off at that age, must re-apply for services and "prove they still have a developmental disability."

"There has been some movement, and that is largely due to parents pushing back," said Windsor West NDP MPP Lisa Gretzky. "It's not enough. When we have kids or adults with autism, or any developmental disability, languishing on wait lists for years at a time — it's not good enough."

3-year-old Lennon has been diagnosed with mild autism. He requires specialized supports with one home visit each week. 0:48

Meanwhile, wait times for children with autism under the age of six are gradually increasing in Windsor-Essex.

Preschool centre sees waits up to 2 years

Our wait list is definitely the longest it's ever been.- Hellena Hebert, Summit Centre for Preschool Children with Autism.

The Summit Centre for Preschool Children with Autism currently has a wait list of between one-and-a-half and two years. That's up about six months from last year.

"Our wait list is definitely the longest it's ever been," said Hellena Hebert, executive director, Summit Centre for Preschool Children with Autism.

This year, there's enough money for nine children to be in the program. The centre is a charitable organization that's not funded by the government. In many cases, families must pay out of pocket to receive those preschool services.

As a single mother of three young boys with autism, a typical day for Jessica Szucki is "absolute chaos, but fun chaos." (Jason Viau/CBC)

To help support the Summit Centre, Szucki is holding an event Sunday known as Autism Awareness — Human Puzzle Piece. It's a way to cap off Autism Awareness Month and raise money for the Summit Centre.

She is hoping to have nearly 1,000 people wear red and form a human puzzle at 4 p.m. at Mic Mac Park.

About the Author

Jason Viau is a video journalist, TV host and radio newsreader at CBC Windsor. He was born in North Bay, but has lived in Windsor for most of his life. Since graduating from St. Clair College, he's worked in print, TV and radio. Email him at jason.viau@cbc.ca