Parents plea for funding
Saturday, June 07, 2003 - 11:00 Local News - Lori Phillips has a scratch on her nose. Her son Matthew, 3, has severe autism. He is non-verbal, only communicates by screams and has many aggressive behaviours, including pushing, hitting, and scratching. Matthew must be carried when outside because there is the danger he will run into traffic. But he is starting to get heavy in his mother’s arms. “I can’t take him anywhere,” she said. Kicked out of his day care recently, Matthew’s violent tendencies have increased. Lori is waiting for help. Her son has been on a waiting list for Intensive Behavioural Intervention (IBI) treatment for six months. Time is ticking because the province only funds IBI until age six. “He probably needs quite a few years of treatment,” Phillips said. “If there wasn’t a cut off, it would be a little less of an issue.” Phillips was one of four Sudbury mothers with autistic sons gathered at a news conference organized by NDP health critic Shelley Martel, Friday morning. Martel is calling for the government to recognize IBI as a “medically necessary service” for children with autism and to continue funding the treatment beyond age six. Right now, the treatment is not funded through OHIP, but through a special program run by the Ministry of Community, Family and Children’s Services. “While it does not work for every child it appears to be very effective in helping the majority,” she said. Autism is a neurological disorder. IBI approaches the children as if they have a brain injury, teaching them through intense repetition and one-on-one work, in an attempt to create new pathways in the brain. But the waiting lists are long for this time-sensitive treatment approach. Currently there are 800 children in Ontario waiting for IBI and of that number about 20 live in Sudbury. “The Ontario Ombudsman Clare Lewis has undertaken a special investigation because of the waiting lists for IBI treatments,” Martel said. Many families are paying out of their own pockets for the treatment, but most can’t afford the price. One year’s worth of IBI treatments (about 30 hours a week) costs around $50,000. One family in southern Ontario is in the process of selling their home to pay for it, Martel said. Rather than try to fund the IBI treatment themselves, many families are turning to the courts to effect change. Twenty-nine Ontario families are in the midst of a charter challenge to get the government to fund IBI beyond age six. Another 80 have filed human rights complaints, arguing the policy discriminates against their children on the basis of age. One southern Ontario family has successfully won a court decision to have the province continue funding the treatment. Recently, an Ontario court disallowed the government’s attempt to appeal that lower court ruling. However, the case was not precedent-setting and only applies to that child. The Ministry of Community, Family and Children’s Services’ Web site explains why children only receive the treatment up to the age of six : “Research indicates that intensive intervention services are most effective when initiated early in a child’s life.” However, the government has yet to produce this research at a trial, Martel said. Like most treatments, it is most effective when administered early. But there is no reason to give up on the older kids. Susan Cindric, a widow and mother of two, had her oldest in IBI for one year before he was cut off. He’s now integrated in a regular class; enjoying it and able to read and write. However, before IBI, Cindric’s son would not have been able to eat lunch in the school’s cafeteria because he was terrified of noises and strangers. “The gains were tremendous during that year. He would have definitely benefited from more,” she said. “It is a treatment supervised by a psychologist. Why don’t they fund it through OHIP? They’re only going to have to spend more on him later.” Also at the news conference on Friday was four-year-old Liam Kitching. The boy did not pause once during the hour, flying his Harry Potter figurine around the room, spinning and occasionally pulling on his mother’s arm for her to join him. At one point, Trish Kitching, a mother of three, thought her son was deaf. She’d clap her hands right beside his ear but wouldn’t get a reaction. If she held a book close to his face, he’d look away, refusing to focus on it. Liam makes little eye contact and when frustrated, bangs his head against any surface. The diagnosis of severe autism came this January. She’s hoping he’ll start IBI this summer, but still has no commitment in writing. “The government should spend a day in my home,” Trish said. “It’s cheaper to spend the money now.” |
