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Options for autism support in Ontario: public versus private

After 17 months of waiting for funding, Anne Rahming was at her breaking point.

Her four-year old son, Mića, had been in a private clinic since he was diagnosed with severe autism spectrum disorder. During that time, Rahming paid out of pocket - around $80,000 - to keep Mića in intensive behavioral intervention, a therapy designed to teach him to interact with his world.

Rahming had applied for funding to keep Mića with his team at Portia Learning Centre in Kanata. After waiting over a year, she was offered a spot at the Children's Hospital of Eastern Ontario - something she didn't want, for fear Mića would lose progress starting from scratch in new surroundings. She said she was told it would be another year before she got funding to keep Mića at Portia.

She was going to go public with her story, and said as much to the Ministry of Child and Youth Services.

"Coincidentally, on the same day that I alerted the AIPEO (Autism Intervention Program of Eastern Ontario) we were offered DFO (direct funding option) for our son," wrote Rahming in an official complaint to the provincial ombudsman.

The Ministry of Children and Youth Services dole out funding for intensive behavioral intervention to regional providers. Those regional providers, such as the Children's Hospital of Eastern Ontario, then divvy it out to families in their area.

Demand outstrips funding, so regional providers have waiting lists. Families can apply for direct service -- a spot in the hospital's program -- or direct funding, which can be used for private clinics.

The gist of Rahming's complaint is that public service providers of intensive behavioral intervention are essentially in a conflict of interest.

She points to a 2004 ombudsman's report that found public service providers are in direct competition for a limited supply of qualified staff in the field.

"It would seem there has long been an understanding at MCYS that regional service providers are, indeed, market competitors within this process - and ones who are also market shapers, it would seem," Rahming wrote.

CHEO's vice president of patient services, Susan Richardson, doesn't think offering the same service as private clinics, as well as overseeing funding for families using them, is a conflict.

"We are very focused on what is in the best interest of children. That's our incentive," said Richardson. "We don't get more money. We have a fixed budget."

Richardson pointed out the ministry funds intervention at public service providers such as CHEO from a separate pot than the money set aside for private providers such as Portia, despite having a single waiting list. The regional provider is simply complying with the program framework set forth by the ministry, Richardson said.

But that's cold comfort for the hundreds of Ontario families like Rahming's butting their heads against the system - or worse, those who can't afford to give their children the same chance Mića has.

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