Above: There’s much more awareness of autism, but what support you get depends on where you live and how long the wait lists are. Shirlee Engel reports.
TORONTO – Lack of funding and long wait times for autism treatment can mean many Canadian children don’t get the early intervention that one mother believes makes all the difference.
Forget’s son is three-year-old McKeigan, who she moved from Ottawa to Alberta to get faster treatment. Forget left her two older children, both in their 20s at the time, back in Ontario.
“I had no choice at that time. It was just what I could do to better his life and where I could get help as soon as possible for him,” said Forget.
At an autism workshop in Ottawa soon after McKeigan was diagnosed, she was told if she wanted treatment quickly, it would mean $160 an hour for a speech pathologist.
“And that’s just a speech pathologist, not an occupational therapist…I’m a single mom. There’s no way I can make this on my own out here and pay for these services to get them done right away,” said Forget, who moved to Calgary about seven months after his diagnosis. McKeigan was three years and three months old at that time.
One month after they arrived, he was in a program four days each week.
Forget said her friends back home are taking out second mortgages just to fund private care.
Take a look at provincial wait times for assessment and treatment of autism in provinces that track it, with data gathered by Global National from health ministries and autism societies for each province:
BLOG: Autism treatment: A system bursting at the seams
Alberta offers faster autism diagnosis and an average of $20,000 per year per family to spend on treatments of their choice.
Sinneave Family Foundation’s Dr. Margaret Clarke said long-term costs for those who don’t get early help can be more than $100,000 each year indefinitely.
“To see a young person with autism not get what they need is the same as seeing a person with diabetes not get insulin,” said Clarke.
The mother of a 20-year-old autistic son, Ottawa resident Amanda Telford knows what it’s like to deal with both autism and diabetes. She made headlines last April when she dropped her son off at a government office when she felt like she couldn’t keep him out of danger.
“It’s been an up and down rollercoaster ride. We just want Philippe to be happy, we want him to be safe and we want him to have a permanent place to live where both his developmental disability, his autism, will be cared for, and the complicating factor is he’s insulin-dependent diabetic and he requires two injections of insulin each day and he requires nursing care in order to have that done,” said Telford.
Her son, Philippe, was constantly getting into trouble and Telford didn’t feel she was able to keep him safe. Phillip has often left the house, and even wandered onto a CSIS property via a construction site.
“He has gone into complete strangers homes, helped himself to bowls of cereal…even stripped his clothes off and taken baths in people’s homes,” she said. “Our family was over a breaking point…we just weren’t getting any services.”
Watch an extended interview with Amanda Telford here:
After contacting her local MPP, the minister of community and social services, the Ombuds office and a Local Health Integration Network (LHIN), Philippe still has no permanent place to live.
“I don’t think that it’s anyone in particular fault who worked the front lines,” said Telford. “I think that the people accountable are the ones who hold the purse strings, make the big financial decisions and this is an area that has been overlooked for two decades.”
Telford is optimistic that services are improving, noting that when Philippe was diagnosed, the only two funded options were speech therapy or behavioural therapy.
“Even now, people who have pre-schoolers—they face long waiting lists even to get funding from the government through the Special Services at Home program,” said Telford. “There were 18,000 people on the waiting list just to be able to get funding to be able to purchase services for their little ones and out of home respite.”
It’s unclear how many Canadian families are in crisis, but experts say early diagnosis is the key to a better life in the future.
Watch Shirlee Engel’s full report on Global National tonight, and check back tomorrow for part two of her series on autism.
With files from Bryan Mullan
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