Why parents of some Ontario adults with severe autism say they're 'terrified' for their futures

Andrew Kavchak's decision to retire was less about taking time for himself, and more about taking care of his 22-year-old son, Steven, who has severe autism.

Three days a week, Kavhak drives Steven to take part in a day program for adults with disabilities. He says the cost is high, though an Ontario government program called Passportdoes provide some financial assistance.

But he worries about the future. Steven needs constant care and cannot live by himself.

The former public servant has been navigating Ontario's changing autism program for nearly two decades since his son was diagnosed with autism at age three.

"The truth is that it's really difficult sometimes to take care of a child, even an adult child who's severely disabled. It's exhausting," he said.

Wait times 'extremely worrying'

When Steven aged out of the Ontario Autism Program at 18, the family was thrust into another system that he saysoffered little to no help.

Adults with autism can turn to Developmental Services Ontario for support, but the wait lists can be just as long, if not longer, than the Ontario Autism Program. Kavchak says he's been told the wait to get his son into a group home could be 10 years.

"We've been on the list for four years. There's still no indication of when our son may eventually get placed in a group home. This is extremely worrying," said Kavchak.

Advocates say there are not enough group homes in the province to accommodate the growing need. In large cities like Ottawa and Toronto, available spaces are being used for urgent care situations, such as when parents are no longer able to manage the care.

Tobi McEvenue, the manager of transition and adult supports at Autism Ontario, said there are not enough resources and services. She said it's critical for people with severe forms of autism to have access to services from childhood well into adulthood.

"We spend the majority of our lives as adults and we require accommodations experienced as youths to carry with us into adulthoodbecause they enable a lot of folks to maintain the proper quality of life that they deserve," said McEvenue.

Autism spectrum disorder ranges in severity. Some people with severe autism require constant care and supportive housing. Adults with low to moderate autism are typically able to live independently.

McEvenue said there is also a large portion of people on the spectrum who are looking for work, which is an issue that is often overlooked.

"It's not a positive horizon for a lot of folks," said McEvenue.

'Hope for the best, prepare for the worst'

Christine Berridge's two sons have autism and she said she's no stranger to navigating the various support programs. Her eldest, Austin, is now 18 and the family has been told he is ineligible for Developmental Services Ontario programs.

The program for adults with an intellectual disability has specific criteria that assesses a person's cognitive ability, adaptive ability and the onset.

A program eligibility document says that applicants must score at or below the fifth percentile in both cognitive and adaptive ability to receive services.

Austin scored in the seventh percentile.

"We're basically limiting people with disabilities to low-paying and student jobs. They struggle enough in society," she said.

A spokesperson from the office of Merrilee Fullerton, Minister of Children, Community and Social Services, said the ministry does not collect diagnostic-related data of those applying to the adult developmental services programs.

The ministry did not answer questions regarding the scoring percentile, the wait list for services or the need for lifelong care.

Austin has been able to get funding from two provincial programs. But because of his autism, anxiety and intellectual disabilities, he needs specialized supports or a respite worker, and his ineligibility limits what he can access.

"I think about it a lot. It is very depressing and very upsetting. So I try to live in the moment, but at the same time, you have to plan for the future, hope for the best, prepare for the worst," said Berridge.

She's concerned about her 11-year-old son, who has moderate to severe autism and needs support in daily living.

Under the current criteria he would qualify for programs such as housing and additional care, but she says the changing landscape of the system makes it difficult to know what to expect.

"I'm absolutely terrified. I feel that whatever we do, it's a lose-lose situation," said Berridge.

"There needs to be something in place for these kids."

This story was produced with the financial assistance of the Meta-Canadian Press News Fellowship, which is not involved in the editorial process.