AUTISM THERAPY OUT OF REACH FOR FAMILY
Waiting list, cost mean many children going without treatment
Tanya Corey is exhausted. Mentally, physically and emotionally.
Her family received the news in October that their three-yearold son, Lucas, was on the autism spectrum. Since then, the clock has been ticking.
A week after his diagnosis, Corey had him on the wait list for intensive behavioural intervention at CHEO. Despite her quick response, the family was devastated to hear that Lucas, their little boy with the mess of curly blond hair and big blue eyes, will likely wait two to three years for treatment.
“I can’t wait another two years and watch my son not get any better.”
Challenges for the family started long before Lucas’s diagnosis. When he started missing developmental milestones as a baby, Corey says she knew something was wrong.
“If you’re a mom, you know right away.”
Still, it took months for doctors to diagnose Lucas as having autism because they wanted to avoid premature labelling.
“In hindsight, we would have liked him to be labelled because we would have been that eight months ahead on the wait list.”
Intensive behavioural intervention is recommended for children on the severe end of the autism spectrum and helps with development in terms of language, socialization, play, cognition and behaviour. For the most promising results, doctors recommend parents get their children into treatment early — before the age of four.
There are currently 237 children on the wait list for the hospital’s intensive behavioural intervention services.
“At CHEO, we have come to recognize that the current system is not the optimal system for the families in this community,” said Lise Bisnaire, the director of the hospital’s autism program, in an email. “We know there are changes to be made so that we can do better. We see parents waiting long periods of time to get services for their children.”
The alternative to CHEO’s program, which is funded by the Ministry of Child and Youth Services, is for families to pay for their child’s treatment on their own — the annual cost of which is estimated between $40,000 and $60,000.
Corey, who lost her job just before Lucas was diagnosed, has been forced to look for other ways to afford her son’s treatment.
A friend set up a GoFundMe page in January in an effort to crowdsource the money for Lucas’s treatment. Since then it has raised around $3,000 — enough to pay for six weeks of IBI.
So far, Lucas has received one hour-long session of therapy from a private practitioner. It cost the family $120.
Some of the GoFundMe money came from a raffle for a pet portrait hand-drawn by a family friend. The Smokehouse Café in Renfrew has created some special menu items for Lucas, the proceeds from which also go into the fund.
Corey set the goal for the page at $16,400 — the cheapest rate she could find for nine hours of intensive therapy a week for a year. Doctors recommend 25 to 30 hours per week for the best results.
While Lucas is learning to speak, he is still largely non-verbal.
“Communication is key because he gets so frustrated when he can’t communicate,” said Corey. “That’s when he hurts himself a lot.”
At times, that frustration boils over into him banging his head repeatedly on the floor. At his daycare, Lucas sometimes hits, scratches or bites other children.
“He is the loud, loud, very active child,” said Corey. “I leave the room for a second, I go back in — the high chair’s in the middle of the living room and he’s standing on the tray.”
The family of four, who live in Fitzroy Harbour, relies on a food bank each month. While her husband, John McArthur, works to support the family, Lucas is in subsidized daycare because Corey’s mental health makes it difficult for her to handle the rambunctious toddler alone.
She suffers from anxiety and depression and has been diagnosed as bipolar.
It was families such as Corey’s that moved Ottawa’s Suzanne Jacobson to found QuickStart, an early intervention program for children with autism.
Jacobson’s two grandsons were diagnosed with autism at an early age. While her family was able to pay for private care, Jacobson says she wanted to make access to services more equal for families.
Under the organization’s Kick Start program, children under 2½ years of age can receive one-onone therapy for four to five months. The program is free to families and there is no wait time.
Jacobson said the number of families using their services has increased in recent months. Before, the Kick Start program would see two or three children each month. Six came through their doors in December.
She suspects an increase in awareness about her programs has led more families to seek her out and more doctors to recommend Kick Start as an option for those who can’t afford private care.
“The biggest problem is the sheer numbers, the increase in numbers,” said Jacobson. “We don’t have a system of care in place from the time that person is identified with autism to the time they leave the earth.”
She explained that a major challenge in Ontario is the diversity across the province’s regions. In recent years, however, Jacobson has seen improvement in the sharing of ideas and information across the province.
The model for Quick Start is openly available to anyone who wishes to start a similar program in their own area.
Jacobson attests to the efficacy of early intervention after seeing the difference in her own grandsons’ development.
“The outcomes for the two boys are significantly different.”
The eldest, Alexander, began his intensive therapy at four and a half. Nathan, his younger brother, began his at two.
“Alexander is in an autism classroom with one teacher, two aides and six kids. He’s going to need assistance for the rest of his life,” explained Jacobson. Nathan is in a normal Grade 2 classroom at the family’s local school.
“He obviously has a good chance of living independently and being a contributing member to society.”
Unfortunately for Corey, Lucas is too old to qualify for Kick Start.
While the family waits for him to be accepted at CHEO, she will put him through private therapy as she can afford it.
Though sporadic treatment is not recommended, she feels at a loss for what else to do.
“He’s my little boy, you know, of course I want him to be able to function normally,” she said.
“I want him to be able to have the opportunities that other kids have.”