Children with autism in Ontario can wait four years for an intensive therapy which, when provided early enough, could change the course of their lives.
The Star surveyed the nine regional centres that manage autism services and found average wait times ranging from one year to four years for intensive behavioural intervention (IBI), the only sustained treatment paid for by the province.
How quickly a child gets it depends on where he or she lives.
In Toronto, children assessed and found eligible for the therapy, targeted at kids on the more severe end of the autism spectrum,
wait an average of two years for a spot.
That compares with 10 to 12 months in London
and three years in Hamilton.
In Durham, York and Simcoe, the average wait is four years, according to Kinark Child and Family Services, Ontario’s largest provider of autism services and the lead agency for the central east region, which spans a huge catchment area north and east of Toronto.
By the time children in that region begin receiving IBI, they are on average 7.6 years old — past the critical window between the ages of 2 and 7, when scientists have shown this type of intervention has the best chance of success.
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One Whitby mother was told last year that her 2-year-old, newly diagnosed with the neurodevelopmental disorder, could expect to wait six years for an opening.
“The wait lists are unacceptable,” says Marg Spoelstra, executive director of the research and advocacy group Autism Ontario. “Families feel like their hearts are being ripped out.
“They know the early years matter. Every time we ask them to wait, we are losing ground. We’re losing an opportunity to have a significant impact on the trajectory of a child’s life.”
IBI is a term used in Ontario to describe an intensive form of applied behaviour analysis (ABA), the most common and proven method of autism treatment based on teaching through repetition and positive reinforcement. In IBI, it’s delivered one on one by a therapist for 20 to 40 hours a week.
It’s not the only autism service provided by provincial agencies, nor is it effective for every child. But for parents of kids needing extended intervention and who can’t afford private therapy, it’s the only option that’s covered.
Families too desperate to wait often remortgage homes or borrow from relatives to cover costs of private IBI, which costs roughly $40 an hour, or $60,000 a year.
“It’s horrendous for parents who have children waiting for service, I can’t argue that,” Kinark president Peter Moore said in an interview. The centre has 569 kids on the wait list while 320 are receiving the therapy.
But Moore and his counterparts at other centres were quick to note that services have come a long way since 2000, when Ontario began funding IBI. One spokesperson refused to comment on the growing lineups, citing possible repercussions from the province.
In the last decade, Ontario has almost tripled the number of children receiving IBI, which last year accounted for $115.7 million of the $186-million autism budget. As of June 30, there were 1,400 children receiving IBI across the province and 1,700 waiting, according to the Ministry of Children and Youth Services.
However, the increase has not kept pace with the surge in autism rates.
As a result, children wait at every stage. It can take a year to 18 months to see a specialist who can diagnose the disorder. Before they even get in line for IBI, they wait for an assessment that determines whether they are eligible — in other words, they join one wait list just to get on another.
Staff at the regional centres say they provide a range of supports to help families cope with the difficult waiting period, including parent groups, speech and language programs, occupational therapy and social skills classes.
Last year, the ministry launched a $25-million program in applied behaviour analysis (ABA), providing a few hours a week over two to six months to focus on specific skills.
“I believe discussing IBI in isolation of the other services and supports available to these children does a disservice to families and raises their levels of stress and anxiety,” Bridget Fewtrell, president and CEO of ErinoakKids Centre for Treatment and Development in Mississauga, wrote in an email.
However, most of those services — which may also have wait times — amount to a few hours a week and are typically delivered in blocks of six to 10 weeks, which is a far cry from the intensive intervention the children are waiting for.
So families end up going from one place to the next, cobbling together short-term bursts of programming with any private therapy they can afford.
It’s a huge stress for parents like Simone Papernick. Her 3-year-old son Noah has spent half his life waiting for help — first for a diagnosis and now for IBI through Kinark. When he was diagnosed Nov. 21, 2011, Papernick says she was advised it could take six years to get a spot.
“I’m scared,” she said last week, as Noah clambered across her lap in the family room of their Whitby home. “It’s like this ticking clock. I have this window of opportunity and I’m not doing all I could be doing. There’s got to be something. What would it take? Should we move somewhere?”
Noah is affectionate and in perpetual motion. He loves stickers and playing dress-up. But he says only a few words and has trouble understanding, which leads to frustration and tantrums. When distressed, he might hit, throw things and flail, and his mother worries about how the increasing aggression affects 5-year-old Isabelle, who runs to her parents when she senses him getting upset.
Papernick, 37, is a social worker in the mental health field who’s used to navigating systems. Her husband Roger Perez, 33, is a nurse. But even they find themselves lost in the system.
Noah has received short-term stints of speech therapy and ABA. But he has also been waiting a full year for occupational therapy for his eating problems — he will only swallow soupy foods and doesn’t have the fine motor skills to feed himself.
After the diagnosis, the pediatrician recommended full-time daycare to develop Noah’s social skills, but he wouldn’t be able to cope with a regular program. So the family pays $1,500 a month for a special-needs preschool five days a week.
They also hired a private ABA therapist for three hours weekly, all they can afford. To help cover costs, Papernick took a part-time job on top of her full-time hospital job, and until recently, Perez worked for a nursing agency on weekend evenings.
Noah’s behaviour therapist, Julie Saunders, shares their frustration. Noah is a quick learner who responds well to repetition and reinforcement, says Saunders, who has worked in the field for a decade and was trained at Kinark.
If only he could get the intensive number of hours he needs to help him communicate and offset the risk of behaviour problems, “it would be amazing.”
IBI wait lists are only one indicator of the state of autism services. About half of children on the spectrum aren’t severe enough to qualify for the program, even though many would benefit from it, notes Spoelstra of Autism Ontario.
There’s no central agency that tracks those higher functioning kids and the services needed to help them. Unless their parents can afford private therapies and schools, they can end up in the same waiting game for bits and pieces of other services.
The biggest challenge facing the field today “is finding the right intervention for the right kid at the right time,” says Dr. Peter Szatmari, head of psychiatry at McMaster Children’s Hospital, the centre for autism services in Hamilton and Niagara.
“No wait list is acceptable,” he says. But children also need access to a wider range of evidence-based therapies, particularly when they are young. He cites new approaches focusing on social communication and play that preschool teachers and early childhood educators can be trained to deliver.
He says there may be enough services to help kids before and after IBI, but what’s needed are case managers who can help families find them and act as single access points for programs and paperwork.
“We’ve got to make sure we’ve got services that are organized, as opposed to being strung together like chicken wire, which is what they are now.”