INDEPTH: AUTISM
Griffen's World
CBC News Online
From The National, November 17, 2004
Reporter: Joan Leishman
Producer: Jay Bertagnolli
Griffen Himmelright
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Autism is a mysterious and cruel condition, but it can be treated. The trouble is who should pay?
Many parents believe intensive therapy helps, but the costs can be crippling. So who should pay?
The world Griffen knows is mysterious and cruel.
Mysterious because no one knows quite how his brain is wired. Cruel because he doesn't understand the meaning of the sights and sounds, the demands and expectations that swirl around him.
Griffen Himmelright was a beautiful baby. He looked perfect, filled his mom and dad with dreams, but by the time he was two, it was clear something was wrong.
Griffen couldn't talk or communicate in any way. He flapped his hands relentlessly, exploded in tantrums, bashed his head against hard objects.
His parents, Michelle And Justin, soon discovered their son was autistic.
Justin Himmelright
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"To watch whatever dreams and hopes you might have had for your child, to be sort of watching them wash away in front of your eyes was a really difficult thing," his father Justin Himmelright says.
"He was very easy to love. We loved him with all our hearts, but it was still really hard," Michelle says.
Now six years old, Griffen has been getting treatment for his autism for three years, and he's learning to talk, but left alone, he slips away into his own world.
He comforts himself by gazing at the raindrops and repeating the phrase "coming to video."
Griffen and more than 150,000 other Canadian kids like him are at the heart of one of the most important Supreme Court cases in many years.
Across Canada, it's usually parents who pay the exorbitant costs to have their children treated. In a decision that could affect every autistic kid in the country, the court will decide if our health-care system should be paying for their therapy.
The woman who launched the court case is Sabrina Freeman . Her daughter Mickey is also autistic, and for more than a decade, Freeman has been fighting for autistic children's rights. To her, the issue is black and white. Autism is a neurological disorder. To treat it, the kids need intensive therapy, which she feels the health-care system should be providing and paying for, but it isn't.
Sabrina Freeman
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"Every day that a child with autism does not receive treatment, they're being discriminated against. It's clear. Every other group in Canadian society receives treatment for their core condition, every other group, except for kids with autism," Freeman says.
No government in British Columbia has ever accepted Freeman's argument. B.C. Attorney General Geoff Plant says therapy for autism is only one of many treatments that medicare doesn't cover.
Geoff Plant
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"Our health-care system has never provided infinite covering for all forms of disability or disorder. The health-care system in Canada has always been about choices," Plant says.
"If the medicare system does not offer treatment for children with autism for their core health need, then it's the big lie. It's absolutely the big lie," Freeman says. "We either have a health-care system or we don't because to exclude the treatment in this case is to exclude the child."
To Freeman , what is clear is that autistic children are being denied their rights. She's pounded on the doors of all levels of government with that message for years but has got no results.
So she led a group of parents to court in a case known as Auton versus British Columbia. The parents won.
The province appealed that decision. In the appeals court, the parents won again.
As a result, the province began paying some of the costs of therapy. It's also now asking the Supreme Court of Canada to consider Auton, hoping it will reverse the earlier decisions made by the lower courts. (*Editor's note: Canada's highest court ruled Nov. 19, 2004, that it's up to the British Columbia government to decide whether to pay for costly early treatment for children with autism)
Geoff Plant says, "Courts are not well suited to make complex social policy decisions." This case is an enormous headache for Plant. It's not only about autism anymore. It's also about who makes decisions on health care. That's always been the jurisdiction of the provinces, not the courts.
"Judges are trained in the law. They're trained in legal questions," Plant says. "They're not necessarily experts in health care. So I think that where we can, we should try to make health care and social policy decisions decisions made by governments, because they are directly accountable to citizens for the decisions they make."
The stakes in the case are huge. Along with British Columbia, almost every other province sent lawyers to the Supreme Court hoping to convince judges to rule in their favour. The provinces don't want the courts to bully in on their right to make health care decisions, and they certainly don't want to be forced to pay out what could be billions of dollars a year to treat autism.
But what about autistic kids and their families? Treatment can cost $40,000, even $60,000, a year and, for the most part, parents are left on their own to cope with that.
At the same time, they believe their children are being discriminated against. That's because the health-care system doesn't pay for the treatment they need.
Griffen and Nate Searle
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Take Griffen. He's in Grade 1 at a private school in Maple Ridge just outside Vancouver. He goes to this school because the public system won't allow his therapist in with him.
Nate Searle is at Griffen's side every minute of the day. Using a method of behavioural therapy called Lovaas, he helps Griffen interpret what's going on around him.
He helps him learn how he's supposed to behave in class, and what it is the teacher is asking him to do.
For trying or succeeding, he gets a red Lego. To Griffen, even simple tasks are extremely tough. So each small advance brings another Lego, and with 10 Legos comes the reward.
What Searle is providing is a kind of physiotherapy for the brain, with constant prodding and encouragement, repetition and rewards. And Griffen is learning at math, learning to read, and learning to keep his frustrations from exploding in class.
"Griffen's emotions are really strong when they're attached to things he dislikes, so last year in kindergarten when the teacher asked him to colour, he may have screamed at her and thrown himself on the floor and I would have had to pick him up and carry him over and help him colour and work very hard to get him back into colouring. And that's part of having autism, you know, not being able to control that behaviour," Searle says.
At times now, Griffen seems like a typical Grade 1 student. His parents firmly believe that's all due to three years of intensive one-on-one Lovaas therapy.
In B.C., Lovaas is prescribed by dozens of psychiatrists. In the United States, the surgeon general calls it the most effective treatment now available, but that isn't accepted by everyone.
Raisa Deber
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To health policy analyst Raisa Deber at the University of Toronto, there are too many questions about Lovaas. She agrees autistic children should have much better health care but that it's not the court's business to decide who gets what treatment, especially a treatment she says may not be the best one.
"My argument is that people don't know if it's effective, who it's effective for, how long, best way," Deber says. "You don't settle that sort of thing with a legal entitlement. You settle that question with better research in terms of figuring out how to improve care. I don't think laying down a legal entitlement to one particularly extremely costly therapy for the one particular designated group that happened to evoke the sympathy of the court is necessarily the best way to manage this."
Managing for Griffen's family means having someone with him most of the time. After school, therapist Sarah McRobby meets him at home and the work continues.
Left alone without structure or direction, Griffen would retreat into his own world. So every day, every evening, and every Saturday, therapists entice him to come out and be part of ours.
Michelle Himmelright
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Michelle says, "And they come in and they work on speech skills, play, socialization. They run peer play dates where we have a peer from school come over and play with Griffen and work on getting Griffen to communicate with that friend and to sort of do the things a typical child would do."
To Griffen's parents, while this intensive therapy six days a week, 12 months a year is making a huge difference, it also means a lot of sacrifices. They've got to find $40,000 a year to pay for it.
It's a rare evening when they're both at home with Griffen and his sister Breanna. To pay the expenses, they have three full-time jobs between them. Still, the $40,000 a year is crushing, especially when you believe the health-care system should be paying it.
"Having been a working professional for over 10 years now, we own nothing," Justin Himmelright says.
"We have about maybe two months' worth of money left to cover about two months of therapy. At that point, we don't know. We'll have to borrow from family once again. We'll have to do something. Everything's for sale," Michelle says.
"I think what do you not do, right?" Justin says. "We have our son in a therapy program that's making all the difference for his future, for his life, and we're fighting for his life, and I don't know what I wouldn't do. I think everything is for sale for him.
"To hear them say, oh, it's all about, you know, the courts can't dictate social policy and they can't tell us how to spend their money, they're breaking the law. They're breaking the law. They are stepping on the rights of these children. And if there was another case out there where they were discriminating against somebody on the basis of race or sex or whatever for health treatment, absolutely, the courts would step in and put an end to that. So why is our kid any different?"
"I don't see it as a charter violation, and I'm trying to make a distinction between what I think would be smart policy and what I think should be mandated by courts," Deber says. "I think let's have a separate debate about whether there should be better care for these people, and I would argue there should be, the same way there should be for a lot of other people falling through the cracks, but that's not the same as saying that this is a discriminatory charter issue."
"If the Charter of Rights and Freedoms cannot protect the most vulnerable minority of society from the majority, then why do we have a constitution? We don't have the Canadian Charter of Rights and Freedoms to hang on our wall and feel good about it, we have it to protect vulnerable minorities. I can't think of a more vulnerable minority than disabled children," Freeman says.
Griffen may be part of a minority, but it's a fast-growing one. The Autism Society of Canada has found that the number of children with the disorder has shot up by 150 per cent in the last six years. Doctors can't figure out why, but some fear it's approaching levels of an epidemic, and this gives the provinces even more reason to be worried. And on top of that, they also fear that if the court makes them pay for autism treatment, the demands won't stop there.
"We know that we're talking about conceivably hundreds and hundreds of millions of dollars a year for funding for autism programs, but if you go beyond that and start to consider issues like special education programs for other children who present with learning disabilities, other kinds of learning disabilities, then the numbers get bigger," Plant says.
As the politics, the debates and the court case wear on, Griffen's family keeps working hard to make sure he's included in normal activities as much as possible.
"There are times that, you know, I overhear the kids saying like, well, if it wasn't for Griffen, we'd be winning, or he's so slow, I wish he wasn't on our team, and those kind of comments, but for the most part, the kids welcome him." Michelle says.
Michelle and Justin may get some relief when the Supreme Court makes its decision. So may 400 other families who now have cases either before the courts or human rights tribunals, fighting to force provincial governments to provide therapy for their children.
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Some Autism Spectrum Disorders
Autistic disorder: This is also known as classic autism. It affects ability to communicate with and relate to other people. Some people with autistic disorder can speak and interact while some who are more severely affected are completely non-verbal.
Asperger syndrome: People with Asperger syndrome do not have a delay in speech development, but may have a range of deficits in social development. They often also have obsessive, repetitive behaviours and preoccupations such as rocking or hand waving.
Childhood Disintegrative Disorder (CDD): CDD is also known as regressive autism. Children with CDD usually develop normally for two to four years before they begin to lose language, social skills and interest in their environment.
Source: National Alliance for Autism Research
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