A day after she dropped off her severely autistic 19-year-old son to the care of an Ontario government office, Amanda Telford said she has “very, very, very, mixed emotions” about her decision.
“I know that in the long run it was the best thing for Philippe, because this is a safety issue for Philippe and we are not able to keep our young man safe,” Telford said in an interview with Global News.
“We love our son very, very much and it’s because we do, you have to sometimes realize what your own limitations are and hand the reigns over to other people.”
Telford said she made the decision after years of chronic sleep deprivation and lack of support services, and a particularly trying few days. On Saturday morning her son wandered four kilometres from home, crossing a busy intersection. And on Monday he got into his medication, swallowing 14 high-blood pressure pills that could have stopped his heart.
And although she has a supportive family, Telford said it wasn’t enough to help care for Philippe, who is also non-verbal and operates at the level of a two-year-old.
“We’re still the primary caregivers and we are exhausted, and we just don’t feel we have (an) adequate amount of help,” she said.
It’s a problem that plagues parents of adults with developmental disabilities, who don’t know where to turn to for help.
Miriam Fry, executive director of Families Matter Co-operative Inc. an organization for and about people with developmental disabilities, also had a daughter who was developmentally-delayed. She said it’s difficult for people to know what parents are going through.
“There is not a single parent who hasn’t thought about doing what Ms. Telford did,” said Fry.
“Any parent who tells you that they’ve never thought about it would be lying to you.”
She said very few people actually do something about it.
“Instead they suffer in silence. They become more and more burned out. They become ill, they become exhausted. They have to quit their jobs. And basically they become incredibly isolated.”
A spokeswoman for the Ontario Ministry of Community and Social Services said each case is reviewed on an individual basis and prioritized according to need and risk.
“The ministry works continuously with a network of community support providers, including agencies, health care and residential care providers that work with individuals and their families and connect with other local agencies, to develop interim and long-term solutions,” said spokeswoman Charlotte Wilkinson in an email. “We don’t stop looking for solutions for clients at risk.”
Conservative MP Mike Lake, whose 17-year-old son Jaden is autistic, said the crux of the problem is a transition issue, in terms of services, from childhood to adulthood.
He said a child with autism reaches a certain age and is suddenly handled completely differently. “But that kid from 17 to 19 is still the same person, dealing with pretty much the same challenges they were dealing with,” he said.
“Provinces across the country actually just need to do a better job, not only of making sure that treatment is a priority…but that they’re aware of it as a lifespan issue.”
As for Telford, she said she has seen her son since dropping him off with Developmental Services Ontario office on Montreal Road in Ottawa.
She doesn’t believe he knows what’s happened.
“He loves being at the place he’s at. He’s been there many times before. The staff at this respite place are very familiar with him and they’re able to care for him appropriately there,” she said.
The Ontario ombudsman is set to release a report later this year that examines the province’s services for adults with developmental disabilities.
The office has received 722 complaints to date and more are still coming in.
Telford said she would like to see an increased level of funding support for adults with developmental disabilities to be able to live in facilities away from their families if that’s what they want.
“We really need to have more support. I really think it’s important for there to be changes made, and for the powers that be to be more accountable,” she said.
“We’ve been abandoned.”
© Shaw Media, 2013