By Amanda Moore
GRIMSBY A Grimsby couple is fuming after funding for their son’s autism treatment was cut off after only one year.
After waiting four years for intensive behavioral intervention (IBI) therapy, Chris Biggs and Diedre McKay were notified last month their six-year-old son Tison was no longer eligible for government funding. Tison, who is non-verbal and was diagnosed with autism at age three, failed to meet the milestones of the government-funded program and his parents are now appealing that decision.
“Basically, he’s being kicked out of autistic school for being too autistic,” said Biggs, co-host of the Biggs and Barr morning show on 97.7 HTZ FM. “He’s a good kid. He’s willing to learn, he’s a good student, but he’s too autistic.”
IBI, the primary method of autism therapy in Ontario, is an intensive form of treatment that uses repetition and positive reinforcement. When started early research indicates results are best when administered before age four it can dramatically affect the trajectory of a child’s life by teaching them to communicate and interact. Long wait times in the province mean the average child won’t access publicly-funded treatment until after six years of age. Private therapy ranges from $60,000 to $100,000 for a year.
Biggs and McKay are not alone in their frustrations. Despite drastic funding increases over the past five years including $5 million announced last August to reduce wait times and improve access the average wait for therapy is just under four years. Since 2007, the wait list for IBI has grown from 1,063 to 1,748 with the regions of Central East (covering York and Durham regions, Barrie, and Peterborough), HamiltonNiagara, and Toronto accounting for 80 per cent of the increase.
In Niagara, there are 123 children waiting to access 43 government-funded IBI spots which means children are waiting between three and three-and-a-half years for therapy, said Brian Davies, chief executive officer at Bethesda Services, which delivers the program in the region. The allocations are determined by Hamilton Health Sciences, which distributes ministry funding in four regions including Niagara.
The number of treatment spots has remained at 1,400 while the number of children waiting has increased by 23 per cent.
“We are very cognizant of our wait time,” said Davies, noting the agency does provide other programs to help bridge the gap.
An annual dinner auction in April raises about $30,000 for the organization. Last year, the organization used those funds to provide respite programs.
While program spending in 2012-13 was pegged at $182 million, the Liberal government was blasted for its handling of autism treatment just before Christmas when the province’s auditor general released her annual report.
Despite a quadrupling in autism funding since the Liberals took power in 2003, “there are still more children with autism (1,748) waiting for government-funded services than there are children receiving them,” auditor general Bonnie Lysk said upon releasing her annual report.
Lysk, in her report, said the ministry needs to re-evalute its program in order to maximize outcomes for all children served.
IBI treatment was delivered to roughly 2,000 children from 2012-2013, while 675 were discharged during that same period. Of the 3,500 children discharged between 2006 and 2012, the auditor general reported 70 per cent were due to treatment no longer being needed, eight per cent declined service, three per cent moved from the region and 19 per cent were for other reasons.
Another issue highlighted in Lysk’s report is inconsistent discharge criteria across the province, despite the province spending $300,000 to date on various consultations.
To understand what “no longer needed” meant, the auditor general sampled a number of case files and found the most common reasons were: benefits from IBI have been maximized; IBI has not been effective in changing developmental level; IBI has been effective and child will benefit more from learning in a natural environment; and child has not made any significant progress since last assessment.
Tison falls into the latter category despite a number of improvements, which makes the discharge even harder to handle, said McKay.
“For us, what we see today is day and night,” she said. “A year ago, we couldn’t give him any verbal instruction. Today, we can tell him to put on his boots and he will put on his boots and maybe his hat and even his jacket.”
The decision to discharge Tison from the program after only one year is a hard one to swallow, and Biggs and McKay are appealing through an independent review mechanism put in place in 2012. The couple say Tison may have been able to meet the milestones had he had more hours of treatment and more consistent delivery. Staffing issues meant the one-on-one treatment was not consistently delivered by the same therapist.
“He didn’t hit the milestones; we can’t fight that,” said Biggs. “But we can fight it on the fact that he didn’t get consistent therapy for six months.”
Biggs, who doesn’t blame the centre, said Tison saw a dozen or so therapists over a six-month span.
The couple’s other issue is with the amount of treatment Tison was approved for. While researchers say IBI is best when delivered for 40 hours a week, Tison was only approved for 25. He gets an extra three hours a week, which Biggs and McKay pay for themselves at about $30 an hour. Only one region in Ontario funds the full 40 hours while the median in the province is 23.
Davies said the decision to discharge is a clinical one made by staff at McMaster Children’s Hospital.
“Bethesda runs the day-to-day programming,” he said. “Discharging is a decision of McMaster based on the progress and development of the individual child based on provincially consistent guidelines.”
Tison’s future rests with an independent review mechanism instituted by the province in 2012 after complaints from families about children being cut off from treatment prematurely and without adequate explanation. As of September 2013, there have been 93 reviews. The outcome remained the same in 90 per cent of appeal cases.
Should the review board uphold the original decision, private care is the only option which starts at about $60,000 a year. The family sold one of their vehicles and the diamond from McKay’s engagement ring to pay for part-time, private treatment while Tison was on the waiting list. They are prepared to do whatever possible to ensure that Tison has a bright future ahead.
“We want him to become as independent as possible,” said Biggs. “We don’t want to give up on him.”
Support for the family has been tremendous since Biggs posted a rant on his Facebook wall, which has been shared nearly 500 times and liked by more than 600 people. While Biggs said he’s not the “bleeding heart” type, he felt the need to vent. Biggs also received dozens of private messages from families experiencing the same problem.
“Our problem is the amount of kids not hitting those milestones to get more funding,” said Biggs. “There are so many kids on a waiting list and so little money.”
Once a complaint has been filed, the review board has 75 days to make a decision.