Tip Us Off
E-mail us with news tips, discoveries, story ideas, and anything else cool.
Advertisements

About Torontoist

Torontoist is a website about Toronto and everything that happens in it. More about us.

Editor-in-Chief: DAVID TOPPING

Publisher: GOTHAMIST

What's On
04/07–05/17 The December Man (CanStage)
05/07–18 Sexual Practices of the Japanese (Factory Theatre)
05/20 meshU (MaRS)
05/21 Toro Gets Its Groove Back (Online)
03/21–05/22 So Me's Portraits (Studio Gallery)
05/31 Idiotarod (Grange Park)
05/01–31 CONTACT (Everywhere)
06/04 Pug Awards Announced (Gardiner Gallery)
03/05–06/14 Evil Dead: The Musical (The Diesel Playhouse)
06/20–21 Star Trek: The Music (Roy Thomson Hall)
04/17–07/13 Out From Under (ROM)
08/15 Radiohead Concert (Molson Amphitheatre)
11/19/2007–08/18/2008 Photos from 69 Featured on OneStop (TTC Stations)

WEEKLY LISTINGS
TV

LEGEND
Art
Film & TV
Porn & Sex
Everything
Misc.
Recent Comments
The Tall Poppy Interview
Favourites

May 10, 2008

Striking Distance

2008_05_11stefan_3.jpg

Stephan Marinoiu, the frustrated father of a 15 year-old autistic boy, began a hunger strike outside the Legislative Assembly of Ontario at Queen’s Park last Sunday, May 4. Six days later, he’s still hanging in there, and although he’s reportedly beginning to show signs of weight loss, he appears to be in good health.

Marinoiu’s son Simon is one of an ever-growing number of children on the waiting list for a government program called Intensive Behavioural Intervention (IBI), designed to give autistic kids the social skills to lead a more normal life. The program, which provides 20-40 hours per week of one-on-one therapy, specially tweaked for each individual child, is incredibly effective and phenomenally expensive. And, with autism on the rise (the US Centre for Disease Control estimates that around 1 in 165 children are autistic, up from around 1 in 500 a decade ago), the waiting times are getting longer and longer. Some, like Simon, wait years for treatment.

Simon was denied access to the program because he reached the age cut-off for service while still on the waiting list. The age restriction has now been lifted, but researchers insist that for speech and behavioural therapy to make a real difference, it needs to start when the children are young. In his YouTube video, Stephan Marinoiu says that he is making a stand not just for his own struggle, but for all the children who stand to benefit from the IBI program.

Bruce McIntosh, a friend of Marinoiu’s and a member of the Ontario Autism Coalition, managed to bear the full cost of his own son’s treatment before the two and a half years he spent on the waiting list for government funding finally paid off. “By golly, it works,” he told Torontoist yesterday. “It worked with my kid, I can’t describe the gains he made. My son has great gaps in his language, he didn’t talk until he was three or older. But Stephan’s boy doesn’t talk at all.” It’s not surprising that McIntosh considers himself one of the lucky ones—despite the fact that he “damn near went broke” paying for his son’s therapy—when you realize that there are more children on the waiting list than are currently in the program.

2008_05_11stefan_1.jpg

This isn’t the first attempt that Stephan Marinoiu has made to persuade the government to make good on its promises to improve access to services for autistic kids. In February, he walked from Toronto to Ottawa, through two blizzards, to put his case to the federal government. The journey took him 11 days and earned him a meeting with Minister of Health Tony Clement—who told him that the matter was a provincial responsibility. Now he’s taken Clement at his word and set himself up on the doorstep of the Ontario Legislature.

He’s managed to attract a fair amount of attention so far. The Minister for Children and Youth Services has spoken with him, as has NDP leader Howard Hampton and several members of the conservative party. “I guess they’ve realised I don’t eat politicians,” Marinoiu commented. “But right now I don’t eat anything.”

So far, representatives have focused on Marinoiu’s own son, and have not made any larger promises.

“They take the attitude that if they help Stephan’s boy, he’ll be satisfied and he’ll cut this out,” says McIntosh. “But I’ve been down there with him every evening and he’s not going to buckle. This man escaped Romania in the middle of the night with nothing but the clothes on his back, and there were people shooting at him. He’s not the sort to back down from anything.”

Photos by Miles Storey.

Email This Entry







Advertisement: Torontoist Continues Below!

Comments (3) [rss]

I'm inspired by his committment. I hope the gov't comes through for all autistic children regardless of age.

I know we have the money for this kind of stuff, if we can afford to bring convicted criminals back to Canada at a hundred thou a pop, then we can afford to give these children a freakin chance! Jeez how far would $100,000 go in the IBI program?

 

thanks so much for this important story.

great to see it on the gothamist network too.

 

IBI treatment is not "phenomenally expensive." This is a myth.

Depending on the intensity and duration of the training, it can run anywhere from $10K - $50K per child per year.

That may sound like a lot, but if you allow severely autistic children to grow into adults who have not been given basic social communication and coping mechanisms you end up with very difficult adults whose specialized and permanent healthcare costs can easily run over $500K per year. Believe me, I've seen it and I've seen the budgets. I've also seen how long-term adult autism care often results in the person spending a lot of their day in restraints and behind glass.

Similarly, the amount of money invested pays off proportionately to the age that intervention begins. Two to four years of IBI therapy begun when a child is two or three years old will result in a lifelong improvement even if the therapy is then halted.

In other words, it is god damned stupid as hell that the Canadian healthcare system isn't investing today to avoid a major healthcare expense in 10 to 20 years time. Though in my mind this is secondary to the fact that programs for disabled people should be funded as a matter of accommodation regardless of the financial incentive.

 
Post a comment (Comment Policy)

2003-2008 Gothamist LLC. All rights reserved. Terms of Use & Privacy Policy. We use MovableType.