Amanda Telford’s decision to leave her severely autistic son at a provincial developmental services office in Ottawa this week was a drastic step for a frustrated parent.
Telford says caring for her 19-year-old son, Philipp, without sufficient government support had become unmanageable.
The Telford case is particularly acute, but it's reflective of challenges many Ontario parents of autistic children share.
Laurie Pearce’s 18-year-old son, Devon McMahon, has been diagnosed with autism as well as a developmental disorder. Although he is highly verbal, Devon has cognitive issues and requires specialized instruction at school.
The Toronto teen also needs constant supervision in the community because he may get lost or confused and not know how to seek help, says Pearce.
“He has huge limitations. He’s 18 and he’s never gone to the corner store by himself,” Pearce says.
Because of his developmental disability, Pearce says Devon will probably go to school until he’s 21, at which point the school will no longer accept him as a student.
Devon is unlikely to have a job after he graduates, and Pearce is dreading the possibility that he may be left without any government support come the fall of 2015.
“I have a countdown on my phone that tells me that in 860 days, we’re going to be completely screwed because that’s the day the school bus stops coming to the front door,” she says.
Parents ‘exasperated’ with autistic care
Autism is a neurodevelopmental disorder that the U.S. Centers for Disease Control and Prevention says affects an estimated one in 88 people.
Individuals diagnosed with autism typically have problems communicating or interacting effectively with other people, and they often suffer from associated conditions such as gastrointestinal or seizure disorders.
As the Telford case shows, raising a severely autistic child requires constant care and a litany of treatments.
“There are thousands of parents of children with special needs who are exasperated, they’re finished, they’re done,” says Frank Viti, president and CEO of Autism Speaks Canada, a privately funded advocacy group.
Viti says there are many costs involved in the care of an autistic child. Depending on when the diagnosis is made, autistic children may receive behaviour therapies aimed at improving their communication and coping skills. The cost varies from province to province, but Viti says that on average, this type of therapy runs about $60,000 a year.
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Then there’s the cost of treating conditions often associated with autism.
Pearce says that from the age of three to 13, her son had a seizure disorder. Because they didn’t have a drug plan, the family spent about $1,500 a year on anti-seizure medication.
Viti says parents may also have to shell out for treatments to deal with gastrointestinal issues, as well as specialized foods — for example, many autistic children are wheat or gluten-intolerant, which means the parents need to find alternative foods.
Autistic children who attend school may require personal care during those hours, Viti says.
Accessing 'respite' care
One of the provisions Ontario parents of autistic children may qualify for is Special Services at Home (SSAH), which parents can use to enrol their children in a skill-building program, like a supervised camp, or to give themselves a breather.
Pearce says she has used these funds for extracurricular and summer programs so that she could continue to operate the technical writing business she co-owns, and which employs four full-time staff.
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"Even though they're technically for 'respite,' we’ve never used [these funds] for a break. We’ve used them so I could keep my job," says Pearce.
Leah Miltchin, whose teen son also has autism, hasn't been as lucky with funding.
Miltchin says her 18-year-old son Daniel is extremely bright intellectually, but emotionally, he "functions more like an eight-year old" and is prone to tantrums and other outbursts.
Although he is enrolled in the travel and tourism program at Toronto’s Centennial College, Daniel's cognitive issues require him to take on a reduced workload.
A single mother with two other teenage children, Miltchin applied for SSAH funding several years ago but was rejected. Now that Daniel is 18, she says she’s unlikely to try to get support through Developmental Services Ontario (DSO), a branch of the provincial government that finds funding and other supports for adults with developmental disabilities.
She says that Daniel’s high-functioning ability and high IQ “would preclude him from receiving any services or funding.”
The Ontario Ministry of Children and Youth Services was not available for comment.
Miltchin works from home as a medical transcriptionist, but says the lack of so-called respite care has diminished her household revenue.
"I can't even work full-time because I have to be on standby on a moment’s notice. Sometimes I have to go pick Daniel up from school if he's having a bad day or take him to appointments. I just have to be available, and that has really curtailed my income."
Part of the problem, says Viti from Autism Speaks, is that a lot of the costs involved in raising an autistic child, including the opportunity costs of lost employment, are hard to quantify.
"We are trying to do the quantification, the health economics, so we can make a stronger case for government intervention and support," says Viti.