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.
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.