While provincial funding for autism has more than quadrupled since 2003, funding for intensive, one-on-one therapy to help treat the disorder has flatlined in recent years, CBC News has learned.
And the number of children in Ontario getting access to that intensive behavioural intervention, or IBI as it is known, has also flatlined.
From 2004-05 to 2007-08, provincial funding for IBI increased by 24.5 per cent per year, on average. Then, from 2007-08 to 2008-09, it increased by 15 per cent.
From 2008-09 to 2010-11 the funding increased by just 2.9 per cent per year, on average, and then decreased by 1.1 per cent from 2010-11 to 2011-12.
"We understand that every child with ASD has unique needs," according to an email statement from a Ministry of Children and Youth Services spokesperson. "As a result of these varied needs, autism funding is not proportionate to the number of children served. It is important to note that IBI is just one of the autism programs we fund. We have quadrupled overall autism funding, which goes towards a number of different programs and services."
In January, Ontario's auditor general announced that the autism program will be reviewed for the upcoming 2013 annual report.
|Percentage change of funding||15.0% increase from 2007-08||3.6% increase from 2008-09||2.2% increase from 2009-10||1.1% decrease from 2010-11|
|Children in IBI||1,917||1,923||1,954||2,004|
|Percentage change of children in IBI||9% increase from 2007-08||0.3% increase from 2008-09||1.6% increase from 2009-10||2.6% increase from 2010-11|
122 children with autism waiting for public IBI funding
In eastern Ontario, 122 children with autism are waiting for publicly funding for IBI, according to CHEO. CHEO also has 122 children waiting for other autism services.
Oscar and Sophie York, who are about to turn four, are two of the children waiting for IBI. They've been waiting for 1 ½ years.
After their mother, Autumn Alberelli, started doing her own research into the disorder, she discovered that the sooner the children could get treatment, the better off they'd likely be.
The twins, at that time, were about two years old, and functioning at a one-month-old level.
"They were basically like moving, one-month-old babies," Alberelli said.
The family then decided to get the children private part-time treatment — about 15 hours per week, per child — and to pay for it themselves.
To learn more about how this family is coping with autism, click here.
That costs them $1,500 per week, or $78,000 per year. Private therapy clinics in Ontario are not licensed or regulated, and the family will not be reimbursed for the treatment they're paying for.
Since starting private treatment at Portia Learning Centre, the family said the twins have come a long way. Sophie no longer has screaming fits, and both children are more interactive and social, and starting to express themselves.
Alberelli and her husband, Ken York, wish the government help started sooner. As it stands, children with autism are about 5 ½ years old by the time they're getting treatment. It can take 18 to 24 months to get to the top of a waiting list, and that's after waiting anywhere from 16 to 19 months for a diagnosis, according to the Ottawa Children's Treatment Centre, which works with CHEO.
"It's almost criminal that families aren't getting help at that young age, because they're gambling with lives," Alberelli said. "And it's not even gambling. There might be the odd child that's misdiagnosed and when they [hit] six years old they're typical, but the majority of them have autism, and they're not going to grow out of it, and they're not going to improve that much unless [they get help early]."
Long wait times due to government funding
The reason for the long wait is a simple matter of funding, according to a vice-president at the Children's Hospital of Eastern Ontario, which runs the autism program for eastern Ontario.
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The $12 million it gets from the government isn't enough.
"There's been an increase in incidence in autism, and there's a lot of demand for services. It's hard to keep up. And the therapy is extremely intensive," said Susan Richardson, CHEO's vice-president of professional services.
"We and the staff that work with these kids everyday are extremely concerned about the waiting list, and feel that families are under a fair bit of stress while they're waiting," Richardson said. "I'm a mom … and I think it's pretty awful, what some of these families have to go through. And we're doing our best with what we have to serve families the best we can, in the CHEO way."
For its part, the province says it has increased spending on autism dramatically. Ontario has added programs and has almost tripled overall funding for autism to close to $200 million.
But funding for the IBI program has flatlined over the last five years.
Alberelli and York can't understand why.
"I understand that as a country we only have so much money, but the little burden that this is now is going to cost us all a heck of a lot more when all these one in 88 children become adults, and they didn't have enough therapy in time, and they do need heavy care," Alberelli said.