Provincial money needed to transition kids with autism to adulthood, petition says

A Windsor, Ont., woman says key support services for her 18-year-old autistic son ended on his most recent birthday, and she is hoping a petition can bring them back for him and other Ontarians.

Michelle Helou told CBC News her son Noah turned 18 this past September, a birthday that meant he would no longer be receiving services he had access to as a child and youth.

Now Helou has started an online petition calling on the provincial government to provide funding so people like Noah will have "a smooth transition" from childhood into adulthood, in terms of access to the support services they need.

The petition has gained the support of hundreds of people so far.

Lisa Gretzky, the MPP for Windsor West, has not yet seen the petition.

But she said the issue that Helou is raising is one that other parents are struggling with, even before their children become adults.

"What we're finding is even when they are children, so under the age of 18, there is a very large gap in parents being able to receive supportive services for children with autism," Gretzky told CBC News in an interview.

Gretzky said that when these children become adults, that gap "becomes even larger."

'I knew it was going to happen'

Helou wants her son to again receive the very same services he had up until the past few months.

"It's basically starting from scratch all over again," Helou said in an interview.

And while she had an inkling that some things were going to change once her son turned 18, Helou said she did not know exactly it would unfold.

"I knew it was going to happen, but not to this extent," said Helou, who describes her son as being "extremely high needs."

Prior to his recent birthday, Helou said her son had access to support services that included behavioural supports, day programs and out-of-home respite care.

But since his 18th birthday, some things have been different for Noah and his mother.

Over the holidays, Helou said her son was at home and could not spend any time at the day programs he went to in the past.

"This year, being cut off...he wasn't able to access that program," she said.

He ended up picking at his face, creating several open sores. His mother believes it's because he was agitated from not being able to do what he would normally do at the day program.

'I better not need a break'

Helou said it's also harder for her to get respite care, now that Noah is older.

"If I need a break, right now, the wait list for out-of-home respite is extremely long, so I better not need a break," said Helou.

"It's hard, it's extremely hard right now, trying to advocate and get everything back that he did have."

A spokesperson for the Ministry of Community and Social Services told CBC News it is "committed to improving supports for individuals with developmental disabilities and their families."

The ministry said it is working towards having "a seamless transition" for individuals as they move into adulthood and remain in need of these supports and services.

It added the province has already signed a memorandum of understanding with all school boards in Ontario so young people will have a transition plan before they leave school.

There's no word on when a transition strategy will be implemented.

The ministry also said the provincial government is investing $810 million, over a three-year period, into community and developmental services. This funding has helped take 14,000 people off a waiting list for developmental services, according to the ministry.

As for Helou's petition, the ministry said it "cannot comment on a specific case" for privacy reasons.

Helou has also been reaching out to MPPs from the Windsor-Essex area in a bid to bring them up to speed on the challenges that she and her son are facing.

"I'm letting them know what is going on, how hard this is and how stressed I am and I'm pretty sure a lot of other families are," said Helou.

"It's just the beginning. I'm not going to stop. I'm going to give this my best shot to help my son and others like him."

Gretzky said the New Democrats support taking action to make the lives of disabled persons and their families easier. But the MPP said she needed to see the petition before offering her formal support for it.