Below is a transcript from the CTV W5 program of last Saturday, followed at the bottom by the Editorial in today's Toronto Star. (Get your barf bag ready.)
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Saturday, May 10, 2008
CTV W5 Program
Life on the Brink
Introduction
ANNOUNCER: CTV's "W-FIVE".
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ANNOUNCER: And, the desperate battle for families touched by autism.
UNIDENTIFIED MAN: Okay little guy.
ANNOUNCER: As more and more children show encouraging signs of progress.
UNIDENTIFIED MAN: It's incredible.
ANNOUNCER: Parents are still struggling with costly treatments most governments won't pay for.
SANDIE RINALDO (Reporter): Can you afford this?
UNIDENTIFIED MAN: No.
ANNOUNCER: Sandie Rinaldo.
RINALDO: This has taken its toll on both of you.
ANNOUNCER: With the constant frustrations of feeling ignored.
UNIDENTIFIED WOMAN: Our kids need to be treated for their condition – autism.
ANNOUNCER: And the ongoing fight to change the system that's supposed to help all Canadians.
UNIDENTIFIED WOMAN: The Canada Health Act can be changed with a stroke of a pen.
ANNOUNCER: This is CTV's "W-FIVE". Here is Sandie Rinaldo.
SANDIE RINALDO: Welcome back. A few weeks ago we brought you the story of Carly, a thirteen-year-old girl with autism who after years of therapy was finally able to speak with the aid of a computer. Well, after that broadcast, we heard from families all across Canada, heart-breaking stories of parents struggling to care for their autistic children. We heard about long waiting lists for government-funded therapy, and how many families are forced to pay thousands of dollars a month to get private help. Many are going into debt, some even selling their houses. Tonight, we're going share some of those stories with you and meet the people who are fighting hard to change the system, families who are facing "Life on the Brink". It's a typical day for four-year-old Barry Hudson, but Barry is anything but typical. He's autistic, which means he's easily distracted and very high maintenance. All of which makes Joanne Blair's job as a therapist challenging.
JOANNE BLAIR (Therapist): You did it! That was awesome! It's very challenging, but I can't tell you how much it's rewarding, and every day whether, or not, it's just a little snip of his scissors, or he learned to tie his shoes, each little step is a huge reward in both him and my life, and the way it's impacted both of us. (inaudible) Barry, let's make the picture.
RINALDO: In most of Canada, the therapy Joanne uses is called ABA, applied behaviour analysis.
BLAIR: Awesome! High-five! That's super! Good for you!
RINALDO: It's intense, repetitive and emotionally draining.
BLAIR: What's this? Nose. That's right, buddy.
RINALDO: Joanne's services don't come cheaply. Her fee is about $20,000 a year for 20 hours of therapy a week. It's a cost the Hudson family who live in Mississauga, Ontario, pay without question. They want the best for their son, will do anything to make it happen.
BARRY HUDSON (Barry's Father): Everything we do with Barry is therapeutic in nature. We want to maximize every moment of the day to help him learn.
RINALDO: And because the Hudsons can only afford to pay Joanne part time, the responsibility for continuing the treatment falls to Jessica, Barry's mother.
JESSICA HUDSON (Barry's Mother): Super duper. Look at that! Your amazing. Thank you. Where's your shoulder. That's your shoulder. Elbow.
RINALDO: It's a labour of love. Jessica gave up her $30,000 a year job to do it, never dreaming it would consume most of her waking hours, but she has no choice.
JESSICA HUDSON: I'm so proud of you! It is hard. It is really hard. Seeing Barry improve, you know, give me courage to go on, and just keep doing it.
RINALDO: Keep doing it because, you see, Barry is on a waiting list. It could be two or three years before the Ontario government pays for his treatment. Too long for Jessica and her husband, also named Barry. What's so significant about this key window that you can't wait the 24 to 36 months for him to receive this kind of treatment and for you to be subsidized for it?
BARRY HUDSON: All the research clearly supports that early intervention is critical. If you get a person early in life, even a normal typical child, and you teach them something when they're young, it will tend to stick better. Same thing with children's autism. If you start early, they'll acquire the skills quicker, and more appropriately.
RINALDO: But the Hudsons are paying a high price for their efforts, a very high price. With Jessica's loss of income and the cost of therapy, the family is in the hole for almost $50,000 a year. Can you afford this?
BARRY HUDSON: No.
JESSICA HUDSON: Hardly.
BARRY HUDSON: No, the situation we've had is every single savings that we've acquired over time, RRSP savings, we have spent all that money on his therapy, and my mother cashed in all of her retirement savings as well to help fund Barry's therapy, so basically used every resource we had, and it may look like we'll lose the house next.
RINALDO: Lose the house, and also on the verge of bankruptcy. Factor in the bills, the mortgage payments, life savings and this family is in big trouble.
BARRY HUDSON: I have to get a job in the circus to juggle the bills. So we do our part, and sacrifice, and our reward is at the end we lose everything, and our son gets nothing. That's inappropriate to me.
RINALDO: There is, however, one big payback in this black hole of debt. The therapy is working. Here's Barry on home video in the first few days of therapy nine months ago with his therapist Joanne. He couldn't speak. Couldn't concentrate. Couldn't even follow the simplest instructions. And here he is now, a different and happier child.
BLAIR: Wooh! Ready? Set, go! Yeah, go, good job, Barry. It brings tears to my eyes to know just the past couple months how he's grown. Just in his basic language, we're still gradually working on it, obviously it's been a challenge. But he's come a long way and also just those skills, we worked extremely hard for and he's done extremely well.
BLAIR: I love your smile.
RINALDO: If you had not chosen to intervene at this point in his life, and waited the 24 to 36 months until he qualified for financial assistance through the government, where would he be now? What would he be like now?
BARRY HUDSON: He'd probably be regressed to a level where he'd be completely detached from reality. He definitely would not be communicating with any of us. He wouldn't be toilet trained. He wouldn't be able to feed himself. He wouldn't be able to dress himself. He'd be completely incapable of any activity, normal function for a normal child. It would be a horrible thing.
RINALDO: A horrible thing, and Barry is just one of more than a thousand children in Ontario waiting for government-assisted therapy they may never get.
BLAIR: What are your feet in? Sand.
RINALDO: The numbers are going up every year. That means other families are also facing financial hardship. The provincial minister in charge of children and youth services is Deb Matthews. You know, we took a look at some of the statistics for the waiting lists because of the number of kids requiring this kind of therapy is growing. And in 2003, there were 79 children on a wait list. By 2006, it had grown to 753, and now 2008, there are 1,148 children on a wait list. Isn't that too many children to be waiting for therapy? DEB MATTHEWS (Provincial Minister): Yes. It is too many children, and that's why we're continuing to really work hard to continue to improve the supports for kids with autism. It's a very high priority for me, frankly, because just like all the other parents of kids with autism, we have the very same goals. We want these kids to be the very best they can be.
RINALDO: And do you agree those early years are the important years? We've got to get in there and get that therapy?
MATTHEWS: Well, it's not whether I agree, it's what the experts say. Our program is based on science. We really depend on experts in the field to guide us in our decision-making, and, yes, they do say that the younger, the better.
RINALDO: Ontario isn't the only province with long wait lists. More than 33,000 children across Canada have some form of autism, and many can't get the kind of therapy they need. If you live in Alberta, you're lucky, no wait lists and therapy is fully funded up until the age of eighteen. Other provinces aren't nearly as generous, and even if government funding does come through, there is no guarantee it will last. Take seven-year-old Philip Shalka who lives in Ottawa. He's autistic, and loves play time with his parents. Robert and Elena assumed he'd have his therapy funded by the provincial government until he was eighteen, but last year, a psychologist told them he wasn't progressing. Even used the words "mental retardation" to describe his condition. Were you shocked when someone came and said to you that your son is mentally retarded?
ROBERT SHALKA (Parent of Autistic Child): Yes, because like yourself, I haven't heard that word for a long, long time, and it reminded me of the old days when people with exceptionalities were described as idiots, imbeciles or morons.
RINALDO: After being told their son was severely disabled, they were cut off from funded therapy. Why do you think he was discharged?
ROBERT SHALKA: I have a theory, although I strongly believe that the autism intervention programs would deny this, but for what it's worth, I believe that there was intense pressure, and there continues to be intense pressure, to get the wait lists down.
RINALDO: Philip's family said to us they think the reason the therapy was cut off is to reduce the wait list.
MATTHEWS: Absolutely not. The clinical decisions, and once we have the new guidelines and benchmarks in practice, and parents will be able to actually understand why their child was cut off.
RINALDO: But until those guidelines are in place, it is almost impossible for parents to appeal. So Philip's parents are now paying for his therapy, $40,000 a year, and the boy that a government-appointed psychologist wrote off as mentally disabled is beginning to spell.
ROBERT SHALKA: We didn't give up, and Philip, with our help, was able to show what he can do, and what he knows.
ELENA SHALKA (Parent of Autistic Child): We have found a key to the door that opens his unique way, how he can communicate with outer the world.
UNIDENTIFIED WOMAN: And how about six times four?
RINALDO: Even more amazing, Philip is getting straight "••• for math in a regular grade one classroom. UNIDENTIFIED WOMAN: Okay, you ready, ten times ten. 1-0-0. A hundred. Super job! Excellent.
ROBERT SHALKA: Amazing little guy, because what he knows, it's just, it's incredible, and it was all locked inside.
RINALDO: Fed up with bureaucrats dictating who does and does not get therapy, parents like the Hudsons are now pushing politicians for change.
BARRY HUDSON: We have wait lists that are insane, two to three years. If we were to put a pediatric cancer patient on a two to three-year wait list for cancer treatment, there'd be a revolution, and I'm not proposing that, but these autistic children, this therapy is their medical treatment. Why do we continue to not support those that need it the most?
ANNOUNCER: Next, the grass roots rebellion for parents.
UNIDENTIFIED MAN: The sweetest words I've ever heard him say is "mommy pain."
ANNOUNCER: And the escalating battle for a critical change.
UNIDENTIFIED WOMAN: Amending the Canada Health Act is not a big deal. What's a big deal is the political will to amend it.
ANNOUNCER: When CTV's "W-FIVE" continues.
(COMMERCIAL BREAK)
BARRY HUDSON: There is absolutely no doubt whatsoever the ABA therapy is what's helped our son. It has helped us to help him as well.
RINALDO: Barry Hudson talks to a group parents of autistic children in Oakville, Ontario, about how applied behaviour analysis opened up the world for his son.
BARRY HUDSON: The sweetest words I've ever heard him say is "mommy pain." Not what you'd expect, I'm quite sure, but now that he can tell us he hurts, we can help him. Without the therapy, he would still hurt, and we couldn't help him.
RINALDO: Barry has joined a grass roots rebellion among parents of autistic children, and they're taking on the federal government. Their goal? Change the Canada Health Act, and make autism therapy an essential medical treatment.
JEAN LEWIS (FEAT): There is nothing more reasonable than a Canadian expecting their child's core health need to be covered under medicare.
RINALDO: Sounds simple, but it hasn't been easy for Jean Lewis.
LEWIS: No political party has done the right thing.
RINALDO: She's the voice of families for early autism treatment, a group that started in British Columbia, and is now spreading across Canada. Lewis believes children with autism are treated unfairly. You see, right now, rather than going to a doctor who gives me a treatment protocol like any other disease or disorder, we're sent to social workers who parents are then negotiating with whether or not they can get money to take from their respite pot to pay for treatment. There's no fit there. We don't belong there. Our kids have a medical condition. They need to be treated for their condition – autism.
RINALDO: Lewis knows firsthand a parent's frustration. Her fourteen-year-old son, Aaron is autistic, in therapy for twelve of those years. Some paid for by the BC government, the rest, $35,000 a year, by Lewis herself.
LEWIS: What we have is a patchwork of services from coast to coast that are provided through the various ministries of social services, or children and family development. They're called different things. Nothing to do with treatment. Everything to do with support, and respite, and babysitting, there all things that families need when they have autistic children, but that does not endorse or doesn't enshrine what our children need to help them access the same thing that every other Canadian kid needs access to.
RINALDO: Five years ago, Lewis joined a group of families to fight a legal battle all the way to the Supreme Court of Canada to force provincial governments to pick up the tab for their children's treatment. But in 2004, the court ruled that it wasn't up to them to tell governments how to spend health care dollars.
LEWIS: And basically said to us this is an issue for parliament. This is not up to the courts. This is an issue for parliament. In fact, they went as far as to say what you're doing is probably the best thing that can be done but it's really not up to us. They did a Pontius Pilate. That was the genesis of our political initiative. We took them at their word.
RINALDO: The group has found an ally in a Liberal senator Jim Munson. He was part of a Senate committee that published a report on autism in 2007 called, "Pay Now or Pay Later." The message in the title was stark and clear.
JIM MUNSON (Liberal Senator): If we don't spend the money and the time with a federally funded program for autistic children, and autistic adults, we're going pay a hell of a lot more later as a society. Institutionalizing children who become adults when parents are gone, you know, that's the biggest fear for these parents. What will happen to my child when I'm gone? Where will he or she be? Well, right now, that person will be in a lonely closeted place if we don't do something now.
RINALDO: You'd think that every parent with an autistic child would be cheering to change the Canada Health Act, but Mike Lake, a federal Conservative MP and at father of Jayden, an autistic child, believes there are other ways to do this.
MIKE LAKE (Conservative MP): I'm going to start by allowing my son Jayden just to say hi. He likes to say hi when he sees a mic there.
RINALDO: His son joined him recently at a press conference on Parliament Hill for World Autism Awareness Day.
LAKE: This is my son Jayden, and as mentioned, he has autism. He's twelve years old right now, and I think it's important for us as parents and for our kids to be out, to meet with people, especially people that are making political decisions.
RINALDO: Jayden Lake is lucky. He lives in Edmonton, so all his therapy is paid for by the Alberta government. Lake agreed that every child should get the same level of treatment as Jayden, but not by changing the Canada Health Act.
LAKE: The federal government the isn't over and above the provincial governments. We don't have the right to just demand that the provincial governments do this thing or that thing. We're partners in Confederation, and if we were to start to dictate individual treatments and therapies that should be named in the Canada Health Act, there would be enormous kickback from the provinces. The provinces need to be held accountable for the things that are within their jurisdiction, and they have the power to do that.
RINALDO: That means no support for Jean Lewis from the governing Conservatives.
LEWIS: Autism is a socially constructed handicap.
RINALDO: And although individual MPs and senators have come on side, no political party has made changing the Canada Health Act a part of their platform.
LEWIS: This is a game of smoke and mirrors. This is something that the health technocrats have cooked up for the politicians who don't understand it. Look, the Canada Health Act is not divinely inspired scripture. It's federal legislation that can be changed with the stroke of a pen. This is how you change it. You add to the list of services ABA interventionists to your list of service. It's done. It's done. Amending the Canada Health Act is not a big deal. What's the big deal is the political will to amend it. That's the big deal. What does that tell you about their worthiness?
RINALDO: But there's a federal election coming up, and Jean Lewis and her group have a plan.
DAVE MARLEY (Lawyer): We can't get at the bureaucrats until we first tackle the politicians.
RINALDO: They've been joined by Dave Marley, a former trial lawyer, and veteran of political campaigns in BC who's working with Lewis for free.
MARLEY: So, we have Parry Sound, Muskoka, this is Mr. Clement's…
RINALDO: They're targeting individual politicians. Fourteen federal ridings across the country, won by just a few votes in the last election.
MARLEY: Now, I don't know who the MP is in some of those, I don't care, nor do I care what party he or she belongs to. What I care about is they're vulnerable, and they know that a small, dedicated group like us can do them some serious political damage.
BARRY HUDSON: Do you want some more salad, Barry?
RINALDO: While federal and provincial governments bicker over who should pay for the treatment autistic children desperately need, nothing changes for parents like the Hudsons.
BARRY HUDSON: Good boy. Good boy, Kenneth. You're eating your salad too?
RINALDO: They're running out of money, and fast, but this family has no intention of giving up.
BARRY HUDSON: It's a lifestyle, and at the end of the day, Barry's been engaged, had therapy for his twelve hours of being awake, but we're pretty much, pretty much exhausted. We have to do what we do for our son because we have nowhere else to turn. It's a job, it's a mission to help our son, and that's how we look at it.
RINALDO: We'll be right back.
(COMMERCIAL BREAK)
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Toronto Star
Thusday, May 16, 2008
Editorial
No easy answers in autism debate
Bruce McIntosh captures the weariness of many parents of autistic children when he says he is "tired of this fight." McIntosh, whose 8-year-old son is autistic, joined other parents at Queen's Park this week to demand the government cut long waiting lists for intensive behavioural intervention (IBI), and provide the costly therapy in schools.
Their frustration is understandable. It is generally thought that the earlier IBI starts, the better. Yet many autistic children languish on waiting lists for years before getting public funding. So many families pay for therapy themselves, at a cost of tens of thousands of dollars.
But the issues aren't quite as black and white as they appear.
True, the number of children waiting for IBI (1,148) has skyrocketed since the Liberals came to office in 2003 and rivals the number of children actually receiving funding for the therapy (1,404).
But those figures mask the fact that the McGuinty government has more than tripled autism spending, and the number of children getting IBI funding has nearly tripled. The paradox is explained, in part, by the government's 2005 decision to stop cutting off therapy once a child turns 6. This move dramatically increased the pool of eligible children. Speedier assessments also stretched the wait list.
Those explanations provide no comfort to parents of children waiting for funding. But they do show the McGuinty government has not ignored the problem. Far from it.
What happens when autistic children are old enough to go to school is just as thorny. Parents say they are forced to make an "impossible choice" between therapy and public education because IBI is not offered in schools. Some have asked the courts to intervene on the issue.
Education Minister Kathleen Wynne last year directed all school boards to provide a specialized instructional method tailored to autistic students. The Liberal election platform also included a $10 million pledge to prepare schools to deliver IBI therapy "on-site."
But it is far from clear if that means IBI therapists will work with autistic children in regular classrooms, as some parents want, or in separate rooms within the school. Whichever path the province takes, a philosophical clash looms between those who argue IBI should be integrated into classrooms (mainly parents), and those who worry its one-on-one focus makes it unsuitable, and even disruptive, in a classroom setting (including many teachers and school administrators).
There are no easy answers to these issues. But the best chance for a solution lies in constructive talks between parents, school boards and government officials.
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To many people the newspaper called the Toronto Star is often considered the mouthpiece of the Liberal Party. The editorial above, in direct response to the successful agitation by Stefan Marinoiu through his hunger strike, appears to carry all the standard messages and party line on autism, namely:
– not an easy task
– very complicated
– we have done a lot so far but more needs to be done
– the Government of Ontario "hears our pain"
– we are working very hard
– we are doing our best
– no simple answers
– we are "victims" of our own success
– success depends on "dialog" among govt, service providers, schools and parents.
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