Andrew Kavchak’s decision to retire was less about taking time for himself, and more about taking good care of his 22-year-old son, Steven, who has severe autism.
Three days every week, Kavhak drives Steven to participate in a day program for adults with disabilities. He says the fee is high, though an Ontario government program called Passport does provide some financial assistance.
But he worries in regards to the future. Steven needs constant care and can’t live by himself.
The previous public servant has been navigating Ontario’s changing autism program for nearly twenty years since his son was diagnosed with autism at age three.
“The reality is that it’s really difficult sometimes to handle a baby, 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 one other system that he says offered little to no help.
Adults with autism can turn to Developmental Services Ontario for support, however the wait lists will 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 gaggle home may very well be 10 years.
“We have been on the list for 4 years. There’s still no indication of when our son may eventually get placed in a gaggle home. This is amazingly worrying,” said Kavchak.
Advocates say there aren’t enough group homes within the province to accommodate the growing need. In large cities like Ottawa and Toronto, available spaces are getting used for urgent care situations, resembling when parents aren’t any longer in a position to manage the care.
Tobi McEvenue, the manager of transition and adult supports at Autism Ontario, said there aren’t enough resources and services. She said it is important for individuals with severe types of autism to have access to services from childhood well into maturity.
“We spend the vast majority of our lives as adults and we require accommodations experienced as youths to hold with us into maturity because they allow lots of folks to keep up the correct quality of life that they deserve,” said McEvenue.
Autism spectrum disorder ranges in severity. Some individuals with severe autism require constant care and supportive housing. Adults with low to moderate autism are typically in a position to live independently.
McEvenue said there may be also a big portion of individuals on the spectrum who’re in search of work, which is a problem that is commonly missed.
“It isn’t a positive horizon for lots of folks,” said McEvenue.
‘Hope for one of the best, prepare for the worst’
Christine Berridge’s two sons have autism and she or he said she’s no stranger to navigating the assorted support programs. Her eldest, Austin, is now 18 and the family has been told he’s ineligible for Developmental Services Ontario programs.
This system for adults with an mental disability has specific criteria that assesses an individual’s cognitive ability, adaptive ability and the onset.
A program eligibility document says that applicants must rating at or below the fifth percentile in each cognitive and adaptive ability to receive services.
Austin scored within the seventh percentile.
“We’re mainly limiting individuals 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 doesn’t collect diagnostic-related data of those applying to the adult developmental services programs.
The ministry didn’t answer questions regarding the scoring percentile, the wait list for services or the necessity for lifelong care.
Austin has been in a position to get funding from two provincial programs. But due to his autism, anxiety and mental disabilities, he needs specialized supports or a respite employee, and his ineligibility limits what he can access.
“I give it some thought lots. It is rather depressing and really upsetting. So I attempt to live within the moment, but at the identical time, you’ve to plan for the longer term, hope for one of the best, prepare for the worst,” said Berridge.
She’s concerned about her 11-year-old son, who has moderate to severe autism and desires support in day by day living.
Under the present criteria he would qualify for programs resembling housing and extra care, but she says the changing landscape of the system makes it difficult to know what to anticipate.
“I’m absolutely terrified. I feel that whatever we do, it is a lose-lose situation,” said Berridge.
“There must be something in place for these kids.”
This story was produced with the financial assistance of the Meta-Canadian Press News Fellowship, which is just not involved within the editorial process.