Jaslyn McLean has spent 14 months banging on doors seeking help for her 18-year-old son. But no one is answering.
Diagnosed with autism at 17, Jaavon is too old to qualify for children’s services. Once an honours student, he’s been unable to function in high school since the onset of obsessive-compulsive disorder a few years ago.
The province considers him too “high-functioning” to qualify for adult developmental services. But he needs supervision to cope with daily life. And without treatment for both his autism and mental health issues, his condition is deteriorating, leading to explosive outbursts and causing him to cut himself.
“In the end there’s not a place for him,” says McLean, who took a leave from her job as a Toronto school caretaker to care for her son and says the stress is taking a toll on her and her other three children.
“It’s so frustrating knowing there are no services.”
It’s a scenario that autism agencies say they are seeing over and over again, despite a series of reports over the past two years urging the province to take action. They charge that too many adults on the autism spectrum are being turned away and found ineligible for programs and supports.
“This is alarming to Ontarians and devastating to those individuals and their families,” the Ontario Partnership for Adults with Aspergers and Autism wrote in a letter last week to the province’s ombudsman, who is investigating adult services and plans to issue a report this spring.
“Compounding this problem, we know that a very high percentage of those refused supports have both (autism) and mental health disorders.”
In late 2012, the Toronto Star’s Autism Project documented the dire shortage of help, leaving some parents so desperate they had been forced to abandon adult children they couldn’t care for.
That triggered a series of investigations, including one by Ontario Ombudsman André Marin, whose office has received 1,250 complaints from families of adults with developmental disabilities.
Today, “the crack in the door is getting smaller” for those seeking help, says Kevin Stoddart, director of the Redpath Centre in Toronto and one of the six agencies and three parent advocates that signed the Jan. 8 letter to the ombudsman’s office.
The Redpath Centre served 650 families last year who paid out of pocket for services for their teens and adults with autism. It’s evidence that despite the growing need, Ontario has a two-tiered system where those who can afford to pay get services, said Stoddart.
Autism advocates had their hopes up last summer following the report of the legislature’s Select Committee on Developmental Services, which called for an end to barriers, creation of an inter-ministerial committee to co-ordinate and simplify services and stressed that services for those with developmental disabilities are a right, not a matter of discretion.
The province’s response, released quietly on Oct. 28, said it is already implementing most of the committee’s recommendations but will not adopt some “such as making developmental services an entitlement program or changing the definition of developmental disability.”
Last spring, the province announced $810 million over three years to eliminate wait lists that saw people waiting for years to receive funding for services such as respite care or day programs.
Last week’s letter from the agencies welcomed the funding as a starting point for a sector “that has long been ignored,” but called the province’s response to the Select committee “disheartening” because it fails to acknowledge many long-standing problems outlined in the report.
Among chief concerns they outlined:
• Too many adults with autism are being rejected by Developmental Services Ontario for supports because they have IQs over 70, even though they cannot function without help, leaving desperate parents with no options.
• The province’s lack of commitment to a new inter-ministerial committee with a clear mandate to oversee the confusing jumble of services.
• Services for those with developmental disabilities and mental health disorders should be considered a right, and not a matter of discretion.
• Collecting data that tracks adults with developmental disabilities through all ministries must be a priority in order to evaluate services, anticipate future needs and prevent people from falling through the cracks.