Simone Papernick’s 4-year-old son, Noah, seen at left in 2012, has been waiting for services through Kinark Child and Family Services since he was 18 months old and she expects it will be four more years.
By: Andrea Gordon Feature Writer, Published on Tue Dec 10 2013
Children with autism in Ontario can wait four years or longer to receive intensive therapy, and most don’t receive it until age 7, even though early intervention is critical to improving their lives, auditor general Bonnie Lysyk has found.
Her 2013 annual report released Tuesday found the province’s autism services for children in disarray with delays at every stage, from the time of first screening for the condition through to diagnosis and provincially-funded treatment.
Wait times for intensive behaviour intervention (IBI) vary widely, according to where a child lives.
So do the criteria for determining whether they are eligible for treatment and when they are ready to be discharged.
The result is an inefficient and inconsistent system in which too many children aren’t receiving services that could change the course of their lives.
“The Ministry of Children and Youth Services has quadrupled autism funding over the last decade, but there are still more children with autism waiting for government-funded services than there are children receiving them,” Lysyk said.
At the three regional centres audited, the median wait time was four years, her report said.
The auditor general’s report confirms information published in the Star’s Autism Project a year ago, which found desperate families trying to find help for their children and waiting years to get it.
There are up to 35,000 children with autism in Ontario and research shows most would benefit from IBI, particularly if they receive the therapy between ages 2 and 6. The province has 1,400 spots for the therapy, a number that has been consistent over the past five years even though funding has risen 20 per cent during that time, the auditor found.
Autism is a lifelong disorder that impairs a child’s ability to communicate, learn and behave, and early treatment is considered key to improving their prognosis. But Lysyk’s report found the system is failing many Ontario families who can’t afford to pay for it themselves.
The Ministry of Children and Youth Services, which spent $182 million on treatment last year, has failed to track wait times or monitor the success of its programs by measuring children’s progress.
The report marks the first time the auditor general has done a full examination of the ministry’s services and supports and services for children with autism.
Among the other findings:
- While the province has quadrupled spending on autism services over the past decade, the wait list continues to grow, with 1,748 waiting for treatment at the end of 2012 versus about 1,400 IBI spots.
- A quarter of children whose parents apply for services are rejected on the basis that there autism isn’t severe enough, even though they would benefit.
- Ontario has no autism strategy to cope with the rising prevalence of the disorder, which is estimated to affect one in 88 children, according to the U.S. Centers for Disease Control and Prevention. A Canadian database has pegged the rate at one in 77 in southeastern Ontario, Lysyk’s report noted.
- Most children receiving IBI through provincial agencies were receiving fewer treatment hours a week than recommended.
- At a time when money is scarce and wait lists are long, the ministry has reimbursed 60 individuals outside the regular service system a total of $21 million for therapy and other services.