May 11th – May 15, 2008
Special Events, Hunger Strikes for Autism, Autism Awareness and general articles
(Please disregard repeated articles within.. there are 105 pages to edit this week.)
Our BLOG is now a google search find…
THIS MAILING IS again MAINLY ABOUT THE AUTISM HUNGER STRIKE IN QUEEN’S PARK.
********
Visit this site to see how you can contribute to the Autism Community with your creativity.
http://www.worksmarternowforautism.com/HAP2008OnlineLiteraryMagazine.htm
This website www.WorkSmarterNow.com | WorkSmarterNow@mindspring.com
is one of several community programs provided by Work Smarter Now. Work Smarter Now For Autism is not a company, business, or organization but rather an online service to assist individuals in the autistic community. Work Smarter Now - Helping small businesses do what they do, better.
Think Smaller, Think Smarter, Work Smarter, Now
Copyright © 2008, Work Smarter Now, All Rights Reserved
Thank you to Listees for sending in articles for dissemination to the Autism community.
From a Listmate
To all Ontario Politicians May 12th, 2008
Can any of you politicians try to explain what you are doing about the epidemic that is going on in Ontario. AUTISM, Autism, AUTISM, Autism, AUTISM.
You were elected to do a job for all the Citizens of Ontario.
Stefan Marinoiu along with lots of other parents/grandparents believe that our children with Autism deserve your full attention as they are citizens of Ontario.
We understand that Autism is a big issue and that one solution will not fix all the problems associated with it.
Take one step at a time, and show parents/grandparents that you are trying to do what is right for all Citizens of Ontario.
As Senator Jim Munson has stated Pay Now or Pay Later, one way or another Ontario is going to pay, the later way will cost a lot more.
The simple solution that can be in place by September 2008 is:
• Stop paying rent for basements and industrial buildings, as this is a huge waste of money that could be used to educate more children with Autism.
• Start using the empty classrooms of the existing schools.
The benefits of this solution are:
• Stefan Marinoiu may not have to DIE to get action from the Provincial Government on Autism.
• Rental money could be used where it should be used. Education!!!
• The Autistic wait list would be reduced.
• Teachers and Registered Autistic Therapists would learn from each other on how best to deal with both sides issues, they are the true experts on Autism.
• Autistic children would then have a place to play with the other children during recess with the supervision of their therapist present.
• We all know that the social aspect of life it just as important.
• They would not become ATTIC Children/Adults, we tried that process many years ago, lets not go down that road again.
There are so many benefits to going down this road and it is a simple solution that you can make immediately just by making the announcement. This would give a lot of parents/grandparents hope that the elected govenment is willing to try to deal with the issue of Autism.
Please do something positive before it is to late for Stefan Marinoiu.
Thank you
Dennis Lendrum
There is Nothing Stronger than the Heart of a Volunteer
Yours in Safe Snowmobiling Always
Visit: www.rcsasnow.com
Dennis Lendrum
From a listmate
Join Autism Canada at Autism One
Our Friends at Autism One Present
Friday, May 23, 11:15 am -12:30 pm CT
Jenny McCarthy's Keynote Webcast Live!
Plus many of the leading presentations of Autism One's Biomedical Treatments Track live online!
Watch and learn as the latest scientific findings and leading protocols are presented by the researchers and doctors who are helping children recover.
In addition, Autism One will webcast The Art of Special Diets, on Wednesday, May 21 and IEP Special Education Law Day, Thursday, May 22.
Seats for the webcasts are limited so please consider registering early.
Register for the webcasts here .
SCHEDULE FOR JENNY AND THE BIOMEDICAL TREATMENTS TRACK LIVE WEBCAST!
Friday, May 23, 2008 (Click on the speakers for their bio and abstract. All times are Central.)
8:00-9:00 Martha Herbert, MD, PhD
9:00-10:00 Steve Walker, PhD
10:15-11:15 Derrick MacFabe, MD
11:15-12:30 Jenny McCarthy - Keynote
1:45-2:45 Mady Hornig, MA, MD
3:00-4:00 Boyd Haley, PhD
4:00-5:00 Woody McGinnis, MD
5:00-6:00 William Walsh, PhD
Saturday, May 24, 2008
7:00-8:00 Jon Poling, MD, PhD
8:00-9:00 Andrew Wakefield, MD
9:00-10:00 Mark Noble, PhD
10:15-11:15 Jill James, PhD
11:15-12:15 Jeff Bradstreet, MD & Jacquie Mancini
1:30-2:30 Amy Yasko, PhD
2:45-3:45 Amy Yasko, PhD
4:00-5:00 Amy Yasko, PhD
5:00-6:00 Amy Yasko, PhD
Sunday, May 25, 2008
8:00-9:00 Phillip DeMio, MD & Angela Shoemaker
9:00-10:00 Kenneth Bock, MD
10:30-11:30 Arthur Krigsman, MD
11:30-12:30 James Neubrander, MD
12:30-1:30 James Neubrander, MD
Don't miss this great opportunity. Hope is always real. Recovery is happening.
FREE IN-LINE VIDEOS
Autism Canada is proud to bring you free on-line videos from the Autism: A Medical Condition Conference held last fall at Ottawa University.
Speakers include:
Dr. Derrick MacFabe Dr. Martha Herbert Dr. Wendy Edwards
Dr. MacFabe's lecture examines the possible role of infectious agents in the causes and symptoms of neurodevelopmental disorders, with ASD as a key focus.
Dr. Herbert's lecture frames autism as a whole-body condition derived from gene-environment-epigenetic interactions with treatment and recovery possibilities advancing on multiple fronts.
Dr. Edward's lecture will address the malfunctioning body systems associated with autism and discuss various treatment options supported with references to reputable research studies.
Click here to view these free on-line videos.
Laurie Mawlam
Executive Director
Autism Canada Foundation
A special request for a highschool student, in Ontario
F.Y.I. Any help that you could provide this student would be appreciated. Her project is due shortly.
Thank you-
Leadership Council, Autism Ontario-Sudbury & District
Disclaimer: It is important to do your own research and make your own informed decisions. Please note Autism Ontario does not endorse any specific therapy, product, treatment, strategy, opinions, service, or individual. We do, however, endorse your right to information.
________________________________________
Dear whom ever it may concern,
Hello, my name is Melissa Makela and I am a grade 12 student at Marymount Academy. I am taking a course called Individuals and Families in a Diverse Society and for our final project we must write a report about a topic that affects families. I chose autism as my topic because it is of great interest to me. I already know quite a bit about the disorder because my 20 year old brother is autistic, but I would like to learn more from families that have autistic children. I have created interview questions that will be of benefit to my report so if there are any parents of autistic children that are willing to answer some questions it would be greatly appreciated.
Thank you very much for your time.
Sincerely,
Melissa Makela (melissa.makela@hotmail.com)
Thank you very much for your time and your help. The questionnaire is below...it is from numbers 1 to 15
* * Melissa Makela * *
Interview for parents of autistic children:
1.How does a parent feel when they find out they will be raising an autistic child?
2.How does your child with autism feel about their disability?
3.What accommodations does a family with an autistic child need to make?
4.In what ways does an autistic child affect her/his siblings that are not autistic?
5.How does autism affect planned activities within the family?
6.How do you feel about the chances that your non-autistic child may have children with autism? What would you suggest to them if this occurred?
7.In what ways could a person with autism have relative independence in living? Will they always need a person to depend on?
8.Do you feel that someone with autism has the same chances of succeeding as someone without autism?
9.In your opinion, is there a lot of assistance in Sudbury for autistic children?
10.Do you feel that there should be more focus on families with autism than families with other disabilities?
11.Does autism receive enough care from the government in your opinion?
12.How do you feel about the growing prevalence of autism?
13.Do you believe there is a link between autism and vaccines?
14.What advice would you give to someone whose child has been diagnosed with autism?
15.How has autism specifically affected your life?
**Thank you for your time :)
******
Upcoming conference Sudbury
Pathways - Learning Disabilities Conference in May!
Pathways - Learning Disabilities Conference
Thursday, May 22nd & Friday, May 23rd
Cambrian College / The Glenn Crombie Centre for Disabilities Services
This conference is designed to help students, parents, and educators to:
• Plan for postsecondary education
• Understand learning disabilities
• Understand tests and assessments
• Learn survival tips
• Learn how to use assistive technology
There will be seperate pathways for parents, educators & secondary school students.
Visit their website at:
http://homepages.cambrianc.on.ca/gcc/pathways/
Google alert
http://www.citynews.ca/news/news_22663.aspx
Father Of Autistic Child On 9th Day Of Hunger Strike 'Waiting For A Miracle'
Tuesday May 13, 2008
CityNews.ca Staff
Stefan Marinoiu is hungry for help, not to mention just plain hungry period. The Toronto man has spent nine long days on a hunger strike at Queen's Park. His campaign: shame the Liberals into changing their policies on funding for programs aimed at autistic children.
His battle is long and hard fought and the cost of failure is high. Autism is a syndrome that leaves kids unable to communicate or relate normally to the outside world. A program called IBI, or intensive behaviour intervention, is essential to giving kids with the problem even a chance to fit in to normal society.
But it's expensive. It can cost up to $60,000 a year and while the government recently removed a restriction that stopped payments for the treatment at age six, the waiting list has still grown.
According to the Ontario Autism Coalition, in 2003 there were only 79 autistic kids waiting for specialized therapy. Now, there are 1,058 children on that list and it's getting larger.
The coalition blames the Ontario government for not following through on a campaign promise to increase the funding for autistic kids. Enter Marinoiu and his refusal to eat until someone listens to him - and the thousands of desperate parents that he represents.
"I've been waiting for this for 15 years," the father of an autistic son explains. "For a miracle from the government. There is no two ways about this. We have to make sure that those children get treatment." Marinoiu is taking his life in his hands with his actions - he's a diabetic and is supposed to eat regularly to maintain his blood sugar.
There's a reason he's willing to put his life on the line. "I decided to go out on a hunger strike because of the love I have for my son," he reveals.
Many simply walk by the forlorn man as he sits with his sign announcing his purpose in front of the Legislature. It is a lonely vigil and he wonders why he hasn't received more reaction from the powers-that-be inside. "If somebody shows up in my front yard with a problem, I'll go and ask 'what's the problem? Please come in. Let's talk about it.' I showed up. People seem to look at me like I'm invisible."
The Coalition blames the Ontario government for not following through on a campaign promise to increase funding for the kids affected with the problem and forcing many families into bankruptcy.
"I am tired of this fight," Coaltion founder Bruce McIntosh relates wearily. "I am tired of fighting for what our kids need and what they've been promised and what they deserve."
The woman responsible agrees more can be done, but feels the Liberals have been making strides in a difficult area. "It's very important that we understand how far we've come," Child and Youth Services Minister Deb Matthews maintains. "Ten years ago, there was no child in this province receiving IBI therapy funded by the government. Today, it's over 1,400 kids, just in the last two years alone ... Ten years ago, the budget for autism services was half a million dollars. Today it's in excess of $150 million."
She's met with the hunger striker and claims she's heard his gripes. And yet Stefan remains at his post and will until his demands are met. And what if he can't make it because of weakness or health? In that case he vows his wife will take over. And if she fails to last, his daughter is prepared to take both their places.
McIntosh insists it simply can't wait that long. "The estimated lifetime costs for a person who does not get IBI therapy runs well into 7 if not 8 digits," he points out. "You can pay for these children to the tune of, you know ... $300,000 now, or you can pay a much, much larger price down the road."
CityNews exclusive: Mother reveals what having an autistic child does to a family.
What is autism?
Google alert
Father on hunger strike for better autism care
Updated Mon. May. 12 2008 7:29 PM ET
The Canadian Press
TORONTO -- The father of an autistic teenager who has camped out at the Ontario legislature for more than a week is vowing not to eat until the province agrees to eliminate the backlog of children waiting for a crucial but costly therapy.
Stefan Marinoiu, 49, who has been drinking nothing but water for eight days, is trying to put pressure on the province to deliver the treatment more quickly to autistic kids, including his 15-year-old son Simon.
"He can hurt all of us when he has those violent tantrums which, of course, come out of his frustrations not being able to communicate with us,'' said Marinoiu, who had to quit his job a few years ago to help care for his son.
"It's a pretty bad situation. I'm getting weaker, I'm getting older, and I cannot hold on (to) him anymore.''
Marinoiu will be joined by other parents Tuesday to put pressure on the province to eliminate by November the wait list of 1,148 eligible autistic children who are still waiting to receive intensive behavioural intervention therapy, or IBI.
The group will also be asking the government to provide IBI treatment in schools no later than September 2009, as well as obtain guidelines and financial assistance from Ottawa for autism services.
But Education Minister Kathleen Wynne said she can't make those promises, although the province is working to make schools more accessible to autistic children.
"My heart goes out to people who have these very special and severe needs,'' she said.
"We will continue to work with the family to provide the resources in the school that this student needs.''
Thousands of teachers and support workers are currently being trained to provide another kind of therapy, called applied behavioural analysis, in schools, Wynne added.
Some schools already have therapists to provide the more intensive IBI therapy, but not in regular classrooms because the one-on-one treatment works better in a separate space, she said.
The province has also boosted funding and almost tripled the number of children receiving IBI treatment to more than 1,400 as of March 31, said Children and Youth Services Minister Deb Matthews. The list of children waiting to be assessed to see if they are eligible to receive IBI has also dropped to 363 from 1,027 four years ago.
Marinoiu said he's been unable to obtain services to help care for his son, who was dropped from the wait list after he surpassed the cut-off age of six.
The Liberals eliminated that cut-off threshold in 2005, but say a dramatic increase in the number of children with autism has put additional pressure on the system, causing wait lists to grow.
The number of children waiting for IBI has jumped to 1,148 at the end of March from 89 in early 2004. Critics point to the rising numbers as proof the province isn't serious about giving autistic children the help they need.
Marinoiu's hunger strike is just one indication of the distress parents are feeling, said Conservative critic Elizabeth Witmer.
"It's another broken promise,'' she said. "The premier promised one thing. It's simply not happening.''
The long waits have forced many parents to drain their savings and go into debt to pay for the therapy, said NDP critic Andrea Horwath.
"Here we are, years down the road, and we still have the same situation,'' she said.
"Parents are still going bankrupt. Parents are still extremely frustrated with the lack of available services. Parents still are fearful of trying to transition their kids into school, knowing darn well that the services aren't available in the school either.''
Without help, Marinoiu said his family may be forced to put his son in an institution -- something he refuses to do.
"I don't have a life anymore and I've got nothing to lose,'' he said. "So I'm going to stay here until the government is going to get it.''
A number of families of autistic children are still waiting to see if they will be able sue the Ontario government and seven school boards for damages over funding for specialized treatment.
The group argues the province discriminates against autistic children because they can't always get both their therapy and education within the public school setting.
The Ontario Court of Appeal, which heard the case in February, is expected to release its decision this summer.
An estimated 50,000 children and 150,000 adults in Canada have autism.
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20080512/autism_treatment_080512/20080512?hub=Health
google alert
http://lfpress.ca/newsstand/News/CanadaWorld/2008/05/13/5547711-sun.html
Teen's father on hunger strike
Tue, May 13, 2008
By THE CANADIAN PRESS
TORONTO -- An autistic teenager's father, who has camped out at the Ontario legislature for more than a week, is vowing not to eat until the province agrees to eliminate the backlog of children waiting for a crucial but costly therapy.
Stefan Marinoiu, 49, who has been drinking nothing but water for eight days, is trying to put pressure on the province to deliver the treatment more quickly to autistic kids, including his 15-year-old son Simon.
"He can hurt all of us when he has those violent tantrums which, of course, come out of his frustrations not being able to communicate with us," said Marinoiu, who had to quit his job to help care for his son. "It's a pretty bad situation. I'm getting weaker, I'm getting older, and I cannot hold on (to) him any more."
Marinoiu will be joined by other parents today to put pressure on the province to eliminate by November the wait list of 1,148 eligible autistic children yet to receive intensive behavioural intervention therapy.
The group will also be asking the government for IBI treatment in schools no later than September 2009, as well as obtain guidelines and financial assistance from Ottawa for autism services.
But Education Minister Kathleen Wynne said she can't make those promises, although the province is working to make schools more accessible to autistic children.
"My heart goes out to people who have these very special and severe needs," she said. "We will continue to work with the family to provide the resources in the school that this student needs."
Thousands of teachers and support workers are currently being trained to provide another kind of therapy, called applied behavioural analysis, in schools, Wynne added.
Some schools already have therapists to provide the more intensive IBI therapy, but not in regular classrooms because the one-on-one treatment works better in a separate space, she said.
The province has also boosted funding and almost tripled the number of children receiving IBI treatment to more than 1,400 as of March 31, said Children and Youth Services Minister Deb Matthews (London West). The list of children waiting to be assessed for eligibility to receive IBI has also dropped to 363 from 1,027 four years ago.
Marinoiu said he's been unable to obtain services to help care for his son since he surpassed the cutoff age of six.
Google alert
Families of autistic kids demanding Ont. eliminate wait list for treatment
2 days ago
TORONTO — The father of an autistic teenager who has camped out at the Ontario legislature for more than a week is vowing not to eat until the province agrees to eliminate the backlog of children waiting for a crucial but costly therapy.
Stefan Marinoiu, 49, who has been drinking nothing but water for eight days, is trying to put pressure on the province to deliver the treatment more quickly to autistic kids, including his 15-year-old son Simon.
"He can hurt all of us when he has those violent tantrums which, of course, come out of his frustrations not being able to communicate with us," said Marinoiu, who had to quit his job a few years ago to help care for his son.
"It's a pretty bad situation. I'm getting weaker, I'm getting older, and I cannot hold on (to) him anymore."
Marinoiu will be joined by other parents Tuesday to put pressure on the province to eliminate by November the wait list of 1,148 eligible autistic children who are still waiting to receive intensive behavioural intervention therapy, or IBI.
The group will also be asking the government to provide IBI treatment in schools no later than September 2009, as well as obtain guidelines and financial assistance from Ottawa for autism services.
But Education Minister Kathleen Wynne said she can't make those promises, although the province is working to make schools more accessible to autistic children.
"My heart goes out to people who have these very special and severe needs," she said.
"We will continue to work with the family to provide the resources in the school that this student needs."
Thousands of teachers and support workers are currently being trained to provide another kind of therapy, called applied behavioural analysis, in schools, Wynne added.
Some schools already have therapists to provide the more intensive IBI therapy, but not in regular classrooms because the one-on-one treatment works better in a separate space, she said.
The province has also boosted funding and almost tripled the number of children receiving IBI treatment to more than 1,400 as of March 31, said Children and Youth Services Minister Deb Matthews. The list of children waiting to be assessed to see if they are eligible to receive IBI has also dropped to 363 from 1,027 four years ago.
Marinoiu said he's been unable to obtain services to help care for his son, who was dropped from the wait list after he surpassed the cut-off age of six.
The Liberals eliminated that cut-off threshold in 2005, but say a dramatic increase in the number of children with autism has put additional pressure on the system, causing wait lists to grow.
The number of children waiting for IBI has jumped to 1,148 at the end of March from 89 in early 2004. Critics point to the rising numbers as proof the province isn't serious about giving autistic children the help they need.
Marinoiu's hunger strike is just one indication of the distress parents are feeling, said Conservative critic Elizabeth Witmer.
"It's another broken promise," she said. "The premier promised one thing. It's simply not happening."
The long waits have forced many parents to drain their savings and go into debt to pay for the therapy, said NDP critic Andrea Horwath.
"Here we are, years down the road, and we still have the same situation," she said.
"Parents are still going bankrupt. Parents are still extremely frustrated with the lack of available services. Parents still are fearful of trying to transition their kids into school, knowing darn well that the services aren't available in the school either."
Without help, Marinoiu said his family may be forced to put his son in an institution - something he refuses to do.
"I don't have a life anymore and I've got nothing to lose," he said. "So I'm going to stay here until the government is going to get it."
A number of families of autistic children are still waiting to see if they will be able sue the Ontario government and seven school boards for damages over funding for specialized treatment.
The group argues the province discriminates against autistic children because they can't always get both their therapy and education within the public school setting.
The Ontario Court of Appeal, which heard the case in February, is expected to release its decision this summer.
An estimated 50,000 children and 150,000 adults in Canada have autism.
http://canadianpress.google.com/article/ALeqM5hI8TNxuym5iCwxXAedzhMx6BE3fA
google alert
http://www.canada.com/windsorstar/news/story.html?id=2d37d8d8-b963-44d9-a4b0-edb8220acc49
$5M to help scientist probe autism DNA
Sonja Puzic
Windsor Star
Monday, May 12, 2008
Renowned genetic researcher and Windsor native Stephen Scherer has received the prestigious Premier's Summit Award for his groundbreaking work.
Scherer, who grew up in Windsor before moving away to pursue his studies and career as a senior scientist at the Hospital for Sick Children in Toronto, was recognized for his contributions to medical research and awarded $5 million over five years to continue pursuing his work with DNA analysis and how it applies to disorders such as autism.
"It's a huge honour," Scherer said in an interview last week. "It's a very competitive award."
The Premier's Summit Award was created by the Ontario government to support outstanding medical researchers and help them expand their work in the province. Recipients were chosen by an international selection committee. Frances Shepherd, a leading lung cancer researcher at Princess Margaret Hospital in Toronto, also received the award.
Scherer, who leads one of the biggest genetics laboratories in Canada, said he will use the award money to tap into new technologies "that will allow us to do experiments we could have only dreamed of before."
He received the award at a recent dinner gala.
"Our major focus is studying the genetics of autism so we'll be looking at DNA of autistic individuals, trying to find the susceptibility genes involved in autism," he said.
"That's a continuation of our work but the approach we're going to try now is really entirely different because there are new technologies available to us."
Scherer said the financial boost will allow his team to "do some blue-sky thinking and really compete.
"We have been competing neck-to-neck with (researchers) in the United States so this will actually allow us to beat them," he said with a laugh.
Scherer is best known for his work exploring the human genome, genetic variations in humans and genetic diseases.
In early 2007, he received international attention when he took part in the largest genome scan ever conducted in autism research, done by a Canadian-led consortium of scientists, called the Autism Genome Project. They were able to pinpoint a region of DNA thought to cause autism in children. The findings could revolutionize the way autism, which affects roughly one in 165 children, is detected and treated.
A graduate of Riverside high school, Scherer went on to the University of Waterloo and University of Toronto.
Scherer has received numerous awards throughout his career and was awarded an honorary degree from the University of Windsor in 2001.
© The Windsor Star 2008
From Andrew Kavchak, Ottawa
Saturday, May 10, 2008
CTV W5 Program
Life on the Brink
Introduction
ANNOUNCER: CTV's "W-FIVE".
...................
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)
_____________________________
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.
______________________
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.
------------------------------------------------------------
Google Alert
http://www.canada.com/ottawacitizen/news/letters/story.html?id=3c9c91a9-3e41-4a67-8e2f-4070bc6ffffe
Hunger strike aims at improving autism services
The Ottawa Citizen
Thursday, May 15, 2008
On May 4, Stephan Marinoiu, the frustrated father of a 15-year-old autistic boy, began a hunger strike outside the Ontario Legislature. He is there 11 days later.
He is frustrated because despite a lawsuit, court decisions, and politically motivated claims to the contrary, our provincial government is not interested in providing appropriate services for autistic children.
This man, like many other families, is financially ruined because he must pay for private services for his child. Soon he will have no money and his child will receive no help. With all our rights, freedoms and financial resources, this man has no other choice but to starve himself in public eye so some one will care about the plight of autistic children.
The public can learn about his cause at the website www.ontarioautismcoalition.com.
As an education consultant and advocate, I see the indifference towards the needs of autistic children on a daily basis. The wait lists are long, and the lack of help offered to autistic children is disgusting. The parents have been begging for help for years to no avail.
The starving father, Stephan, has asked the provincial government:
- to eliminate the waiting list by Nov. 1;
- hire more behavourial therapists in schools;
- regulate the therapists available to families;
- work with the federal government to develop a national autism strategy and get more funding for Ontario.
Enough is enough. Let's end the tragedy of lack of services for children with autism.
Dale Ford,
Stittsville
© The Ottawa Citizen 2008
*****
********
From Nancy’s List
Updates regarding Stefan, and the media event tomorrow morning:
From a listmate:
The article below is in many media outlets across Canada communicating Stefan's plight. I pulled this one from ctv.ca.
You can also watch a video of Stefan asking for the three things and for everyone to be there to support him tomorrow here on the OAC website: www.ontarioautismcoalition.com
--------------------------------------------------
--------
This message was posted on another public list, it contains an important message, so I share it here for everyone. As parents and advocates, we may not always agree on the symatics of the solutions, but we all agree on the problems our kids face and that improvements for our kids are necessary. Please show your support and appreciation to Stefan for taking actions to ensure our kids needs get the attention they deserve:
Hi everyone,
I wanted to say we have received some distressing news yet again. Stephan and I discussed this issue this morning. Stephan believes that everyone should come tomorrow regardless of a group as a parent you may be affiliated with.
Stephan has a right to have his own views of what he believes needs to happen with Autism treatment in Canada.
For the record he wants Autism in Medicare, that is his personal view, but as others have mentioned he wants some provincial things done too. He wants the wait lists cleared, he wants IBI in the schools but most importantly he wants the best intervention for his son. Rightfully so.
Stephan asked the other day why the turn out was not as big as it could have been for the Oakville rally on political strategy. Sadly I had come to learn that members of certain groups were sending out private emails that were less than supportive or favorable for turn out. The reason his views differ on how things might get done. He was concerned this has/ would happen again for tomorrow.
So I want to emplore all parents, neighbours, therapists, grandparents... no matter your personal views on how things should be done and even if they might differ from Stephan's, please show up tomorrow for this man, he is truly an awesome father and person. I've spent many hours with him, listening to his stories about his life and where he has come to be on this journey to help his son and other children who suffer from Autism.
Let's not let down the man who has gone a week without food for any reason. Let's show we are a community tomorrow.
On behalf of Stephan
XXXXXXXXX
--------------
This from McMaster University:
EMBARGOED by the International Society for Autism Research until May 15, 2008, at 12:00p.m. EST.
Dr. Rutherford is available for advance interviews today and Wednesday. Her contact information can be found at the end of this release.
A headshot of Mel Rutherford can be downloaded at http://dailynews.mcmaster.ca/images/Mel_Rutherford.jpg
Research tool can detect autism at 9 months of age
Hamilton, ON. May 15, 2008 – The ability to detect autism in children as young as nine months of age is on the horizon, according to researchers at McMaster University .
The Early Autism Study, led by Mel Rutherford, associate professor of psychology in the Faculty of Science, has been using eye tracker technology to that measures eye direction while the babies look at faces, eyes, and bouncing balls on a computer screen.
Rutherford will present her peer-reviewed research tomorrow (May 16) at the 7th Annual International Meeting for Autism Research in London . (www.autism-insar.org) .
“What’s important about this study is that now we can distinguish between a group of siblings with autism from a group with no autism – at nine months and 12 months,” says Rutherford . “I can do this in 10 minutes, and it is objective, meaning that the only measure is eye direction; it’s not influenced by a clinician’s report or by intuition. Nobody’s been able to distinguish between these groups at so early an age.”
Currently, the earliest diagnostic test for autism is reliable around the age of two, and most children in Ontario are diagnosed around age three or four. The earlier the diagnosis the better the overall prognosis, says Rutherford .
“There is an urgent need for a quick, reliable and objective screening tool to aid in diagnosing autism much earlier than is presently possible,” she says. “Developing a tool for the early detection of autism would have profound effects on people with autism, their parents, family members, and future generations of those at risk of developing autism.”
More information on the Early Autism Study can found at www.earlyautismstudy.com.
McMaster University , a world-renowned, research-intensive university, fosters a culture of innovation, and a commitment to discovery and learning in teaching, research and scholarship. Based in Hamilton , the University, one of only four Canadian universities to be listed on the Top 100 universities in the world, has a student population of more than 23,000, and an alumni population of more than 131,000 in 128 countries.
-30-
For more information, please contact:
Mel Rutherford
Associate professor,
Department of Psychology, Neuroscience & Behaviour,
Faculty of Science,
McMaster University
905-525-9140 ext 27120
rutherm@mcmaster.ca
Jane Christmas
Manager, Public & Media Relations
McMaster University
905-525-9140 ext. 27988
chrisja@mcmaster.ca
Michelle Donovan
Public Relations Manager: Broadcast Media
McMaster University
905-525-9140 ext. 22869
donovam@mcmaster.ca
----------------
Important info shared from a listmate, especially for those with older kids and adults they care for:
Dear D.A.N.I. parents and supporters,
A few years ago, the government sponsored a "Passports Initiative" .
In this initiative, parents and NOT agencies would be given some money to plan a program for their children.They could design whatever they wanted centred around their child, like programs offered by D.A.N.I.
Sounds great?
However,
1) It is a lottery system- so only 1 out of 10 or so would receive money
2) It is a small chunk of money that would not be enough for a full week program; perhaps only 2-3-4 days/ week AT BEST ----depending upon what was available.
SO-we all filled out forms and waited.
Very few families did receive Passport money and the rest of us are waiting....
We have just heard news that Passports is now being "PAUSED"
There will be no new money for parents IN 2008 AND THEY ARE RE-EVALUATING IN 2009!!!!!!!
which means no new money for young adults - which means; WHAT WILL THE YOUNG ADULTS DO?
It is essential that we all fill up the halls of
Queen's Park on Monday May 26, 2008, @10:00 am
as one of the MPPs will be addressing this issue in session.
* Please check attachment
* Please pass on this email to interested people
Please Cc us when you rsvp your attandence to
Cindy Mitchell or Helen Dionne
Passport Funding Action Group Durham Family Network
(905) 723-8111 (905) 436-2500 ext 2222
E-mail cmitchellworks@rogers.com e-mail hdionne@dafrs.com
Sincerely,
Susie and Kathy
D.A.N.I.
Developing and Nurturing Independence
141 York Hill Blvd.
Thornhill , ON L4J 2P5
Ph. 905.731.6606
Fax 905.764.0332
Cell 416.666.7427
www.dani-toronto.com
-----------------
From CBC:
Attitudes towards children with disabilities need improvement, parents say
Although our communities have come a spectacularly long way over the years when it comes to including kids with disabilities, barriers persist, say people who deal with such issues daily.
Last Updated: Friday, May 2, 2008 | 12:33 PM ET Comments8Recommend22
By Lisa Bendall CBC News
It should have been an exciting milestone in the life of her child. Instead, due to a simple piece of hardware, the first day of kindergarten was for Kim Bell the beginning of a series of frustrating battles with regulators and red tape.
Ian Bell's entrance into kindergarten in Winnipeg ran into a glitch when school administrators didn't want his walker brought on the school bus, saying it was dangerous.
Ian has cerebral palsy.
Bell was faced with a choice: Shell out close to $500 for a second walker to keep at school, or drive to the school every day herself with the mobility device in her back seat.
Neither option sat well.
"I went to the superintendent. I went to the school trustee. I went to the provincial Department of Education," remembers Bell.
She pored over the education guidelines and determined that no policy existed for this type of situation. "I suggested, 'Can't we just tie it down with a bungee cord?'"
Finally, after weeks of perseverance, Bell received a response from the school's transportation department. The bungee cord system had been accepted.
But that didn't put an end to the regulatory challenges she and her son would have to face. A decade later, Ian is 16 and things society's acceptance and inclusion of people with physical disabilities have improved but his mom still finds hurdles to overcome while integrating him into the educational system.
Bell still spends hours on the phone or writing letters to secure the accommodations he needs, for example. Right now she's working on his transition to high school. What class will he attend? What supports will be available? And who the heck can she talk to if it's insufficient?
"Parents [of children with special needs] have to dedicate their lives to staying on top of this," says Angela Scotton of Duncan, B.C., whose 10-year-old twins Megan and Brenna have autism spectrum disorders and sometimes behave in ways that others consider inappropriate. "It's a full-time job, if you want your child to succeed and have the opportunities that they're capable of."
Barriers
Parents have to fight full-time to make sure the basic needs of their kids with disabilities are met? Really? Nowadays, aren't our schools welcoming, our buildings accessible?
The truth is, although our communities have come a spectacularly long way over the years when it comes to including kids with disabilities, barriers persist, say people who deal with such issues daily.
The lack of adequate schooling, the poverty, the exclusion faced by these families is probably news to much of the general public, says Zuhy Sayeed, past-president of the Canadian Association for Community Living, an organization that advocates for people with intellectual disabilities and their families.
"People are under the assumption that people with disabilities are taken care of," she said. "Most Canadians see the ramps. They see agencies for people with disabilities. So they really wonder what our issue is."
The issue is that a ramp in front of a door does not always translate into accessibility. Full inclusion means offering supports, like classroom aides. It means awareness and training, so that staff know how to handle it when a child with autism behaves differently. It means being open to new ways of doing things when necessary, so a walker can be belted in with a bungee cord.
"Just bringing your child into a mainstream classroom does not mean integration," points out Jean Ju, a psychologist at the Ottawa Children's Treatment Centre. If no other supports are in place, children can't participate, Ju says.
"We've seen kids who are integrated but very lonely — nobody plays with the child."
Public's role
Ju was thoroughly impressed by the high school teacher who was determined to include a wheelchair user on the cheerleading team. The teacher told Ju: "She can wear the uniform, she can cheer, she can help make the signs. We will make a place for her."
Too often, though, children with disabilities deal with rejection.
"It's painful," Scotton admits, adding she spends much of her time simply teaching others about what it means to have autism. "Most of these kids have tremendous potential — if it's nurtured and supported."
Very often, intentions are good. Scotton's daughters were warmly welcomed into a local gymnastics program by the club owner, for example, but the instructors were at a loss as to how to deal with the girls' disabilities.
"It was very overwhelming for everyone in the room," Scotton recalls.
Laurie Beachell, national co-ordinator of the Council of Canadians with Disabilities, says that sometimes there's a reluctance to even try to make things work.
"I think people just shut down," he says. "People don't know where they can get the resources to handle this. Many within the education system and elsewhere simply see additional workload, or costs."
Ju uses the example of a girl she worked with who was never invited to her friends' birthday parties. The other families, in their inaccessible houses, just assumed it wasn't possible. "But they never asked the girl with the disability," Ju points out. "Maybe the girl would say she can be carried, or that she crawls up the stairs at home."
"I don't think that people are intentionally mean or rude," Bells adds. "They just need educating. And as parents of kids with disabilities, that's really our job — to educate the people in our community about our children and their needs."
Resources and positive approaches
That's the right attitude, says Beachell. "You operate from the positive — that this is doable, that it has worked elsewhere. You operate from the belief that this is my local school, so of course my child's going to go here. I'm here to provide as much information as I can to make it possible."
According to Joanna Blais, director of the Program and Student Services Branch at Manitoba's Ministry of Education, Citizenship and Youth, schools are indeed working to update their inclusive policies and practices. But she encourages educators and parents to keep the lines of communication open.
"Strong school and family partnerships are one of the best ways to ensure that planning can be done in consideration of the student's needs and the school division's resources and policies," Blais says.
Constant advocacy can be exhausting, but there's strength in numbers, notes Scotton. Like others before her, she's banding together with other parents to share the lobbying load.
"We're able to divide tasks, rather than trying to take on the world by ourselves," she says.
They've dubbed their group the Cowichan Valley Autism Society, and they're seeking better school support, and more provincial funding for families. They also hope one day to build a resource centre where other parents of kids with disabilities can find information and guidance.
But the biggest change these families want to see is public attitude, and to that end these families are also working to increase awareness and media exposure.
"I think when people have a better grasp of the disability, they can then pursue ways to make it work," says Scotton.
Sayeed's own two boys with disabilities are now grown and pursuing careers in international hotel management and personal training. "We just don't believe in a limit," says their mom. "My sons have proved that they can learn, given the right opportunity and support."
Lisa Bendall is a Canadian freelance writer and author of "Raising a Kid with Special Needs: The Complete Canadian Guide" (Key Porter Books, 2008).
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This message was forwarded from a listmate who is a financial advisor, some great info and resources:
From: Advisor.ca [mailto:service@email.advisor.ca]
Sent: Tuesday, May 06, 2008 10:35 AM
To:
Subject: Disabilities, special needs and financial planning
(May 2008) A surprising number of people have a significant
financial planning challenge weighing heavily on their minds, one that
has very little to do with retiring debt-free or travel to Florida -
they're concerned about planning for the ongoing care of dependent,
special needs adult children. The statistics suggest nearly every
advisor has at least one family in their book of business who has this
concern. That number is even higher when you take siblings, friends,
extended family members and other caregivers into account.
When your client's dependent child faces a lifetime of inherent
disability-related earning limitations and continued dependency into
adulthood, perhaps for many years after they're no longer around to
provide care, a number of very specific planning measures need to be put
into place.
Find out more:
Planning for special needs
Financial and tax supports for persons with disabilities
The new RDSPs
Henson trusts
Insurance and children
Read the whole package:
Disabilities, special needs and financial planning
________________________________
ADVISOR.CA | ADVISORS EDGE | ADVISORS EDGE REPORT
ADVISOR CONFERENCES | OBJECTIF CONSEILLER | CONSEILLER.CA
One Mount Pleasant Rd, 12th Floor, Toronto, ON, M4Y 2Y5
Copyright(c) 2008
------------------
This was posted on another public list, I share it here in case any of our listies can lend some assistance for this event:
Jay's volunteer sub-committee have been working hard to recruit volunteers.
We really need volunteers to help with the details of the actual swim, and
someone to represent the fundraising/ sponsorship sub-committee at Jay's
Steering Committee Meetings (approximately every other week).
Please send this e-mail to people you think might be able to help. Thanks!
Jay Serdula is a 35 year old man with Asperger’s Syndrome who lives in
Kingston, Ontario and works at the Royal Military College. Jay is fulfilling a
dream of swimming across Lake Ontario this summer. This event is to raise
awareness of Asperger’s Syndrome, raise funds to support individuals with
Asperger’s Syndrome and demonstrate that people with Asperger’s can carry out
extraordinary feats.
Jay spent most of the summer of 2007 training in open water as well as
completing a swim across Navy Bay, Kingston, Ontario on November 2, 2007 in water
temperatures at 550F. During the winter Jay has been working very hard
training for this summers swim and is looking forward to getting back in the Lake
for more open water training.
Jay’s swim has tentatively been set for the July 28th week, starting from
Niagara-on-the- Lake, Ontario and finishing at Marilyn Bell Park in Toronto,
Ontario. Jay anticipates that it will take him more than 30 hours to complete
this swim.
Jay currently has a small but committed group of supporters who are helping
him prepare and organize the swim for this summer. However more people are
needed in all aspect of the swim event and fundraiser for Asperger’s. These
include volunteers to assist with:
- Marketing/promotion s (media relations, promotional activities)
- Fundraising/ Sponsorship (raising funds)
- Paddling Volunteers (accompanying Jay on his open water training)
- Swim Event Volunteers (July 2008), Niagara-On-The- Lake and Toronto
(a variety of activities requiring volunteers with a variety of talents)
Financial support for this event would also be greatly appreciated if you
are not able to volunteer your time. Jay has selected the following charities
to benefit from his swim: Asperger’s Society of Ontario, Community Living
Kingston, Extend-a-Family (Kingston) and Kerry’s Place Autism Services.
If you are interested in volunteering or learning more about Jay’s Swim or
Asperger’s Syndrome, please check out Jay’s website at:
_http://swim4asperge rs.wordpress. com_ (http://swim4asperge rs.wordpress. com/)
or email us at _swim4aspegers@ hotmail.com_ (mailto:swim4aspegers@ hotmail.com)
.
Please forward this email on to any one you think might be interested
in learning more.
Pat La Londe
------------------
This is an American article, but I hope it helps some listmates understand that you are not alone in your feelings of how autism has affected you. Just one comment, please never tell your children that police will take them away, children need to learn that they can go to police for help when they need it, if they are told police will take them away, that message may stop them from getting help when they need it.
http://seattlepi.nwsource.com:80/local/361730_autism05.html
Sharky Munat, who has autism, is comforted by his mother Lillie McGarry after he became upset. Photographed in their Capitol Hill apartment in Seattle on Monday, April 21, 2008. (Dan DeLong / P-I)
Parents are autism's hidden victims
Baffling disorder hurts more than just those who have it
Monday, May 5, 2008
Last updated 3:56 p.m. PT
By PAUL NYHAN
P-I REPORTER
Sharky Munat was 2 years old when the police came.
For 45 minutes the toddler's screams pierced the thin walls of his mother's two-bedroom apartment, until a neighbor finally called the cops.
His mother was used to screaming from her unusual child, who cried for hours if she simply laughed while watching television. But Lillie Addams felt sick when a police officer stopped them to check her son for bruises as they walked to the park.
The officer quickly realized there was no attack -- he was just one of "those kinds of kids" -- but his mother wouldn't know the kind was autistic for two more years.
"Check it out, buddy. If you keep it up, they are going to take you away," the one-time ballet dancer told her son once the officer let them go. Then she sat on a park bench and cried for an hour.
Children have autism, but parents are often invisible casualties. Their child's disorder ricochets through their lives, breaking up marriages, draining bank accounts and robbing them of sleep. University of Washington researchers found these parents, among all with disabled children, suffer the highest levels of depression and anxiety symptoms, and parenting stress.
Since Sharky was diagnosed, his mother has dealt with depression, chest-seizing anxiety attacks, insomnia and incessant guilt that she wasn't doing enough.
"It's this overwhelming sense of powerlessness," Addams said. "I feel blamed by society, by insurance companies. As if it was somehow our fault."
Seattle may be a leading center for autism research and treatment, but its therapists and the medical community can't handle the growing number of families dealing with the disorder. Today, as many as one in 150 children are diagnosed with autism, up from three to four out of 10,000 a decade ago.
More than a year after Sharky's diagnosis, the Addams family felt alone and stressed. Without a map for treatment, they, like other Seattle parents of autistic children, were stuck in a maze of therapies for a disorder with no cure.
There are few insurance plans that cover touted behavioral treatments and not enough therapists or slots at specialized schools. Parents can wait 18 months for services -- after doctors urge them to begin treatment quickly -- and pay tens of thousands of dollars a year out of their own pockets for therapy.
Over the past year and a half, Sharky's three parents -- Lillie, her ex-husband, Ted Munat, and her partner, Stormy Addams -- have visited a dozen doctors, therapists and classrooms, yet they still can't fill big gaps in their son's treatment. "Everywhere we have gone they are pushing you in different directions," Stormy Addams, 43, said. "Or they are pushing against you."
On a cool afternoon in April 2007 while many 4-year-olds play at nearby Miller Park, Sharky comes home from school and stays inside his Capitol Hill apartment, running across the wood floors like any kid his age, and talking about Spider-Man and Big Wheels.
But he runs across the same area again and again, his ponytail and hands flapping around him, uttering words often impossible to understand. By his third birthday, this engaging child had choked a baby and wanted to kill the family cat.
His behavior meant there were no raucous birthday parties, play dates or big dinners out for this family because Sharky could get overstimulated, lash out and throw tantrums that lasted for hours, or simply invite unwanted glares and advice from others parents.
"Our world has become very small," said Lillie Addams, a registered nurse at Group Health Inc.'s cardiac unit.
The Seattle P-I talked to families, therapists and researchers around Seattle dealing with autism who echoed her alienation, anxiety and lack of support.
The daily grind
Like an invasive weed, Sharky's autism permeated most daily routines for his first four years.
At dinnertime in June, Stormy Addams snatches Sharky's broiled salmon from their tiny oven, puts it in the freezer and then onto his Hello Kitty placemat, hoping to avoid a scene.
"Make it colder. Make it cold. Make it cold," Sharky begs again and again because if it's warm, he likely won't eat, he will shriek with the same terror as when his bath is too warm.
Then a bite of salmon falls onto Sharky's Spider-Man T-shirt and he begins swiping at it compulsively. When another morsel drops to the floor, he finally screams, and Lillie Addams ushers him to the first of four timeouts in his bedroom.
After two hours of this, dinner finally ends, and it's off to the bathroom, where one parent holds him down so he won't thrash while the other brushes his teeth. Even after the 4-year-old falls asleep in Stormy and Lillie's queen-size bed that night, he thrashes, eventually bloodying Lillie Addams' nose.
"Everything is all drama," Stormy Addams says.
Fast-forward 10 months, and Sharky has taken impressive strides. His sweet social nature now far outweighs more typical outbursts of 30 minutes or less.
But his speech and comprehension remain noticeably delayed, and his mother's worry is just as intense, though now focused on finding and paying for therapy and the right school.
That means Lillie Addams often sleeps in bursts of two to four hours. She tried Ambian, Lunesta and Trazodone, but those sleeping pills worked only for a few months.
"What I am not doing?" Lillie Addams, 39, asked.
Last fall the worry got so bad, she thought she was having a heart attack when her chest began tightening. It turned out to be anxiety attacks.
Since autism remains such a mystery, parents battle this anxiety for years and constantly manage their expectations. When Sharky turned 4, Lillie Addams thought he would never go to college. Now she is not sure.
"Now I just hope he can lead an independent life, and have a girlfriend, or someone to love."
Her maternal hopes fluctuate because her son's autism is impossible to pigeonhole. With an infectious smile, he plays peacefully with his 5-year-old neighbor in the apartment courtyard one day and tells his father he loves him 20 times the next.
"Lots of friends of mine, their first comment is: 'What a happy child he seems to be,' " Munat said.
But Sharky always struggled to speak and understand. In the fall of 2006, a group of therapists, psychologists and nurses told them why, diagnosing him with autism, but not much else.
"It was kind of like this is what you got. See ya bye. We'll send you some paperwork," Lillie Addams said.
Since then, Addams has struggled to understand a disorder that's so hard to define that children are diagnosed on a spectrum. She still doesn't know where her son falls on that scale.
Meanwhile, treatment costs easily overwhelmed this family, which earns a combined $70,000 a year. They would love to get Sharky intensive behavioral therapy, for example, but they can't afford it.
"It's like having a carrot dangled in front of you," Addams said. "I make $30,000 a year, and often the cost of ABA (behavioral therapy) is $30,000."
Health insurance is little help. Few company plans cover behavioral therapies. After Sharky's two working parents cover co-payments for speech and occupational therapy there is little left for such promising therapies.
With little extra money, the three parents patched together Sharky's treatment plan over the last year, and worried his window to progress was closing because of what he missed. Sharky was diagnosed at age 4, later than many children with autism
The expense is one more layer of worry on an already complicated family. Lillie Addams and Munat divorced in 2002, and now split custody.
Yet this three-parent arrangement works, and Stormy Addams' role as stay-at-home mom and ad hoc therapist is clearest, etched in a tattoo of her cradling Sharky that runs down Lillie Addams' entire thigh.
Plans for the future
Autism is everywhere these days -- in People magazine, on Oprah, the presidential campaign trail and YouTube -- but none of this attention, or fresh state and federal money, has reached this family.
Instead, Lillie and Stormy Addams are so desperate that they may move to Colorado, California or Canada, anywhere that promises better support when Sharky's state benefits run out at age 7.
Amid their worry, Sharky makes progress. Over the last year, he learned to use the toilet, ride his Big Wheel, sleep in his own bed and brush his teeth.
To reduce their stress, the family now does yoga together every morning, and his mothers just resumed their only other stress reliever: going to the gym.
His meals and baths, though, are still served cold, and his mother still worries.
That's because Sharky will finish kindergarten this June at the UW's Experimental Education Unit. His parents wanted him to spend another year at the school because he lacks basic skills, such as writing his name, but he has to move on. They haven't been told where.
But Sharky has improved outside special schools and therapy sessions. A year ago, he slipped on his first pair of black ballet slippers.
Now every Thursday inside a North Seattle studio, Sharky glissades alongside his teacher and assumes a classic port de bras, his intense focus intermittently broken by a toothy grin.
"The more time I spend, the more hope I see," Lillie Addams said.
From Nancy’s list
(blue font)
Stefan was still at Queens Park today, he is not giving up. I am aware of some parents that were going down to check on him and his well being. At last news last evening, he had been checked by a nurse yesterday and was still doing okay.... he has been meeting up with many groups of students going on tours of Queens Park; they have been asking him all about his hunger strike, and learning from Stefan the realities of our issues. Teachers are listening in too. He is still working hard at Queens Park to get the message out to everyone he can.
------------------------------------
I would like to suggest that everyone write a letter to the Toronto Star Editor on this article. At the bottom, a listmate put in some of their comments, and I have left them in for your reference.......
lettertoed@thestar.ca
No easy answers in autism debate
May 15, 2008
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.
______________________
Note from our listmate:
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.
------------------------------------------------------------
Here are some more articles regarding Stefan:
London Free Press
By Antonella Artuso, QUEEN'S PARK BUREAU CHIEF
Dad pledges hunger strike in fight for autistic children
Wed, May 14, 2008
TORONTO -- A father who started a liquids-only hunger strike 10 days ago says he won't give up his protest until his 15-year-old son, and all autistic children, get the treatment needed to live a fuller life.
Stephan Marinoiu said his mortgage payment comes due today and he's $400 short, but he'll move his family onto the front lawn of Queen's Park if necessary to secure Intensive Behavioural Intervention (IBI) for his son Simon.
"Children are our riches; they're our gold," said Marinoiu, a father of three.
NDP MPP Andrea Horwath said record numbers of children are on the waiting list for provincially-funded autism services, despite the assurances of Dalton McGuinty's government more is being done.
"Stephan really is the face of parental anguish and sheer frustration here in Ontario."
Bruce McIntosh of the Ontario Autism Coalition said parents are often put under enormous financial pressure to provide IBI out of pocket -- $20,000 a year for a 20-hour-a-week program and up to $70,000 a year for a full-time program -- and many can't afford it.
Marinoiu said his son has never made it off the waiting list for services and now, without support, he poses an increasing physical threat to his family.
McIntosh said his organization conducted an on-line poll of families with autistic children and found 47 per cent had liquidated assets, 62 per cent had borrowed money, 11 per cent received charity and 4.2 per cent had declared bankruptcy.
"And so this premier and these ministers, who have declared a war on poverty, are driving the families of children with autism into bankruptcy at 21 times the rate of the general population," McIntosh said. "And that, my friend, is failure."
There are more than 1,000 children on the waiting list today compared to fewer than 80 in 2003, McIntosh said
In the legislature yesterday, Horwath challenged Children and Youth Services Minister Deb Matthews to clear the backlog for autism services.
"Why has the McGuinty government driven a desperate parent to stage a hunger strike over the lack of publicly funded treatment for children with autism?" Horwath asked.
Matthews said she has twice met with Marinoiu in the last few days and her ministry staff are working hard to provide his family with appropriate support.
"I will tell you what I told Mr. Marinoiu, and that is this: we are working as hard as we can," Matthews said. "I urge him to stop his hunger strike, to go back to his family."
The minister said her government has more than tripled funding for IBI. The budget has swelled from about $500,000 just 10 years ago to more than $150 million.
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You can send letters to the editor of Toronto Sun here: editor@tor.sunpub.com
Toronto Sun
Hunger Strike Won't Waver
May 14, 208
By: Antonella Artuso
A father who started a liquids-only hunger strike 10 days ago says he won't give up his protest until his own 15-year-old son, and all autistic children, get the treatment they need to live a fuller life.
Stephan Marinoiu said his mortgage payment comes due today and he's $400 short, but he'll move his whole family onto the front lawn of Queen's Park if necessary to secure intensive behavioural intervention (IBI) for his son Simon.
"Children are our riches, they're our gold," said Marinoiu, a father of three.
NDP MPP Andrea Horwath said record numbers of children are on the waiting list for provincially funded autism services, despite public assurances by Dalton McGuinty's government that more is being done.
"Stephan really is the face of parental anguish and sheer frustration here in Ontario," Horwath said.
Bruce McIntosh of the Ontario Autism Coalition said parents are often under enormous financial pressure to provide IBI out of pocket -- $20,000 a year for a 20-hour-a-week program and up to $70,000 a year for a full-time program -- and many can't afford it.
Children and Youth Services Minister Deb Matthews said she has twice met with Marinoiu in the last few days and her ministry staff are working hard to provide his family with appropriate support.
-----------------------------------------------------------------------------------------
Guelph Mercury
Mental health services for children lacking
May 14, 2008
Chris Margetson
Dear Editor - Stefan Marinoiu, 49, the father of a youth with autism is on a hunger strike at Queen's Park to bring attention to children and youth with autism who are unable to qualify for the treatment they need.
In my work, I receive daily calls from parents at the end of their rope -- some contemplating suicide -- wondering if they should give up custody of their fetal alcohol spectrum disorder or autistic children or children with other mental health problems.
Parents are foundering with the financial, emotional and health issues, the result of raising children with any number of mental health and/or developmental disabilities.
Children with fetal alcohol spectrum disorder are usually not eligible for developmental services, due to the lack of appropriate, accurate tools mandated by the province to use in assessing their abilities. Hundreds of foster children across the province do not receive accurate assessment, diagnosis and treatment for their disabilities, many due to the lack of resources in the child-protection field.
These children must be ready before or at age 18 to live independently, without family support. And anything that may prevent this is often ignored. There are not enough resources in this system to support many children past this age of independence, whether they are actually ready for this or not.
Early-intervention programs and services that are meant to provide support and service to younger children with special needs have extremely long wait lists and are not even close to meeting the need.
March's provincial budget did not provide any new money for child-welfare services, children's mental health and developmental services, children's treatment centres or any of the programs funded by the Ministry of Children and Youth Services.
Children with autism, fetal alcohol spectrum disorder or other mental health or developmental problems were just pushed to the side again. Their families are stressed to the limit and no one seems to care.
The Canada Health Act does not include mental health services in any meaningful way, and the federal government has, since 1992, been eroding the transfer payments to provinces for use in funding these services.
Families with autistic children, those with fetal alcohol spectrum disorder and other mental-health issues have been organizing, lobbying, writing letters and begging for help for years. We are just not being heard.
Our children deserve better than this. One in five children in Ontario desperately need these services.
In the wake of last week's Children's Mental Health Services Week, I ask that we do something now before these children become adolescents and adults who live on the street, are institutionalized, are unable to maintain employment or are suffering addictions and are alienated from their families and communities.
We are all failing these children and must do something now.
-- Chris Margetson, senior fetal alcohol spectrum disorder consultant, Guelph
-----------------------------------------------------------------------------
Brantford Expositor
Father of autistic son continues hunger strike
May 13, 2008
A Toronto man who has been on a hunger strike for over a week is demanding the province eliminate the backlog of autistic children waiting for a crucial but costly therapy.
Stefan Marinoiu, 49, will call on the government today to move more quickly to provide treatment for children with autism, including his teenage son.
He wants to see the wait list of more than 1,100 autistic children who are eligible to receive intensive behavioural intervention therapy, or IBI, eliminated by November.
Marinoiu also wants the province to commit to providing the treatment in schools no later than September next year.
Education Minister Kathleen Wynne says thousands of people have already been trained to provide another kind of therapy, called applied behavioural analysis, in schools.
She says some schools have therapists to provide the more intensive IBI therapy, but not in regular classrooms
---------------------------------
This mailing went out today to all the teams currently registered for the Autism Speaks Walk on June 8th at Nathan Phillips Square. There is so much good stuff in it from Autism Speaks, that I am sharing it here in it's entirety. If you have not yet registered for the Walk, please go to the links marked below and register. Pre registration makes a faster time for you pre walk and ensures we have enough supplies and things on hand for all that come. I would love to learn that we have underestimated the participation this year, and have to rush around in the next few weeks to bring in more supplies!!!!
Walk Now for Autism
Ontario 2008
Sunday, June 8, 2008 Nathan Phillips Square, Toronto
8:30 AM Registration - 10 AM Walk Start
Walk Update
Thanks to all of you, with a little over 3 weeks to go, the Ontario Walk is shaping up to be the biggest and best yet. Over 1300 registered walkers have signed up. A reminder that the KRG Children’s Charitable Foundation has pledged $2 for every registered walker who raises $100 or more, so make sure all team members sign up and help us build on our overall total.
We officially welcome in summer this holiday long weekend, and it is a perfect time to recruit more walkers to your team, get posters up in your local communities, and make an ask for support from your friends, family, work colleagues and neighbours. It’s a great time to raise money in support of your team!
As many of you know, His Royal Highness The Prince Edward Earl of Wessex will be joining us at the Square and participating in the opening ceremonies. Jack Grunsky and his daughter Cosima will be entertaining us and the Jays on the Road will be testing our batting and pitching skills. Under the Umbrella Tree will be back to run our activity area and we have some great resource fair booths for you to visit.
Many walk teams are holding creative events and activities to raise money in support of their teams and we salute all of you for going this extra mile. Dollars raised from garage sales, casino nights, car washes, book sales, puzzle piece campaigns have a direct impact on the research and awareness activities of Autism Speaks Canada .
As we get closer to walk day, please continue to check back to the website for updates and to watch our walk total go up and up and up.
For those walkers and teams who are planning on having their own Team Tshirts, please remember to make an additional one for our Tshirt quilt and drop it off in the Walk Tshirt area on Walk Day.
We also ask that anyone wishing to volunteer on Walk Day should contact the office by phone or email. We still have some critical jobs that need to be filled. Remember – you can volunteer and participate in the walk. 1-888-362-6227 or autismspeakscanada@autismspeaks.org
Autism in the News
Over the course of the past week many of you have heard about Stefan Marinoiu’s hunger strike in support of his son and families across Ontario . Nancy Morrison, Co-Chair of the 4th Annual Ontario Walk Now for Autism has been doing a wonderful job at presenting the latest developments with respect to Stefan. I know you join me in thanking Nancy for taking on this task. Should any of you not already receive emails as part of Nancy ’s listserve, please email the office directly and we will be happy to pass on your information to Nancy – autismspeakscanada@autismspeaks.org.
With you, we sincerely hope that Stefan continues to monitor his personal health for his own sake and the sake of his family. Stefan has brought much-needed attention to the unique needs of older children and young adults on the spectrum. When we collectively speak of the need for the development of comprehensive National Autism Strategy in Canada one of the key features that requires significant focus are the needs of older children, young adults and adults both in terms of school and community-based supports and services.
The incidence rates of autism show no immediate signs of decreasing and at the same time, our children are getting older and their needs for services and supports are changing. The demands placed on health, education and social services sectors in Canada are already feeling the impact. At Autism Speaks, we are committed to ensuring that this sector of the population is not left behind or ignored as we work with our partners here in Canada as well as in the US and across the world to establishing best practices with respect to treatment, interventions, supports, services and diagnosis for all individuals on the autism spectrum.
A recent Autism Speaks press announcement announcing a multinational initiative to raise awareness and to provide standardized professional training for research, diagnosis and treatment of autism is just one of the ways we hope to have an impact. This initiative involves the participation of CIHR (the federal government’s agency for health research). For more information, please view this link: http://www.autismspeaks.org/press/multinational_initiative_to_raise_awareness.php. The work of the Family Services Committee of Autism Speaks in looking at best practices specifically as they related to young adult and adult services will serve as another vital resource. As Autism Speaks Canada continues to grow and expand within and beyond Ontario , it is our plan to establish a Canadian Family Services advisory board who will help to bring a uniquely Canadian perspective to the issues facing our families here in Canada .
The International Meeting for Autism Researchers (IMFAR) – May 15-17, London
To see firsthand results of your fund raising efforts in the area of research, keep checking www.autismspeak.org. Canadian researchers figure prominently on the agenda through the course of the meetings. Click on this link to learn more about the featured presentations.
http://www.autismspeaks.org/press/imfar_2008_annual_meeting_highlights.php
Administration Update
Please note that the office will be moving within our current building from Suite 801 to Suite 504 this week. All of your pledges, donations will be forwarded to our new office.
Finally, have a safe and restful holiday weekend! Thanks to all of you for your incredible effort to-date!
Autism Speaks Canada - 1243 Islington Avenue, Suite 801 Toronto, ON M8X 1Y9 888-362-6227 autismspeakscanada@autismspeaks.org
Autism Speaks Canada is a registered charitable organization (#8694020208 RR0001).
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Attached to today's mailing is a pdf file, information about a Dr. Carbone Workshop being held in August in Oakville, Ontario!!!!!
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I understand the CHCH TV from Hamilton news tonight carried this story:
Dr. Mel Rutherford, Ph.D, Associate Professor in the Department of Psychology, Neuroscience and Behaviour, and Canada Research Chair in Social Perception
Early Autism Study will be presented at the IMFAR this weekend
PRESS RELEASE
MCMASTER UNIVERSITY DEPARTMENT OF PSYCHOLOGY, NEUROSCIENCE AND BEHAVIOUR DEVELOPING A FAST & OBJECTIVE SCREENING TOOL FOR THE EARLY DETECTION OF AUTISM
McMaster University’s “Early Autism Study,” headed by Dr. Mel Rutherford, is showing progress towards the development of a fast and objective screening tool for autism in a child’s first year. Dr. Rutherford is presenting this peer-reviewed research on May 14th at the International Meetings for Autism Research in London , England .
Using eye tracker technology, and an innovative design, the Early Autism Study has been able to reliably distinguish a group of babies who are high-risk for autism from a low-risk group as early as 9 months of age! Unlike other attempts at developing early screening for autism, this test is fast and objective. Data collection takes 10 minutes (on each of 4 visits in the first year) and it is objective, because it relies on eye-tracker measurement of eye direction, while the babies looks at faces and eyes and balls “playing” on the computer screen.
Currently, the earliest diagnostic test for autism is reliable around the age of two, and most children in Ontario are diagnosed around the age of three or four. An earlier autism diagnosis followed by appropriate treatment consistently leads to improved overall prognosis. Therefore, there is an urgent need for a quick, reliable and objective screening tool to aid in diagnosing autism much earlier than is presently possible. Developing a tool for the early detection of autism would have profound effects on people with autism, their parents, family members, and future generations of those at risk of developing autism.
To schedule an interview with Dr. Rutherford please call (905) 525-9140 x26032.
More information about the Early Autism Study can found on the study website: www.earlyautismstudy.com.
Contact Details
Lalaine Mina
Lab Manager, Rutherford Lab
McMaster University
Department of Psychology, Neuroscience and Behaviour
1280 Main Street West
Hamilton Ontario L8S 4K1
(905) 525-9140 x26032
Media coverage over the next few days on Dr. Mel Rutherford’s research on diagnosing autism at an early stage:
Thursday, May 15th
12 noon – CBC Radio’s Ontario Today
5:30 p.m. – Global National News – report by Jennifer Tryon
6 p.m. – CTV Toronto – report by Monica Matys; CHCH news – report by Scott Urquhart
11 p.m. – CTV National News – report by Avis Favaro (also runs at 10 p.m. on CTV Newsnet)
Friday May 16th
7 – 9 a.m. – Canada AM – Mel Rutherford will do the interview from CTV’s bureau in London, UK
Saturday, May 17th
12 p.m. – CBC Radio’s Quirks & Quarks
Print interviews which will run Thursday/Friday
Globe and Mail, CanWest News Service, Hamilton Spectator, The Daily Telegraph
The same talk will be given on the 28th in Burlington:
"The Development of a Fast and Objective Screening Tool for Early Autism"
Wednesday, May 28, 2008
7:00 pm
Theatre Burlington, Drama Centre
2311 New Street, Burlington ON
The talk on May 28th is brought to you by: Autism Ontario Halton, Autism Ontario Hamilton, Canadian National Autism Foundation, McMaster University and the Rutherford Lab. For flier for the talk on the 28th you can print out, post & distribute:
http://www.asohalton.org/Dr%20Rutherford%20May%2028%20-%20poster.pdf
See the Autism Community Calendar - Halton & Surrounding Area for Media Coverage re: the talk she will give at the International Meeting For Autism Research (IMFAR)
http://www.asohalton.org/commcalendar.htm
The International Meeting For Autism Research (IMFAR)
http://www.autism-insar.org/index.php?option=com_content&task=view&id=25&Itemid=96
http://www.autism-insar.org/index.php?option=com_content&task=view&id=28&Itemid=79
For more information see the Early Autism Study site:
http://www.earlyautismstudy.org/index.html
A bit from the Early Autism Study site:
We want to find early signs of autism. This study started in the spring of 2005, after a couple of years in development. We have only just begun to have enough data from which to draw any conclusions. The exciting thing is that our early results indicate that the measures work! Our ultimate goal is to be able to predict which of the young babies visiting our lab will develop autism, but in order to do that, we need more people to participate. Do you have a young baby, early in his or her first year of life? We are especially interested in babies who have autism in the family. Does your baby have a sibling with autism? Come visit our lab, or we can visit you! Join the Early Autism Study!
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Below is a transcript from the CTV W5 program of last Saturday,
Saturday, May 10, 2008
CTV W5 Program
Life on the Brink
Introduction
ANNOUNCER: CTV's "W-FIVE".
...................
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)
_____________________________
From Taline’s List
(red font)
Stefan is doing well. A nurse checked him yesterday and he was fine. He is still determined to continue even though so many of us have tried to convince him to stop before he gets really sick.
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I have a few captions from just some of the emails I've received for Stefan to share with all of you. I will be printing these out and taking them to him when I see him again. They may help to lift his spirits.
If you're seeing Stefan in the next day or so, let him know that a google search of : ("stefan mariniou" + "hunger strike") calls up more than 500 sites.
Please let Stefan know that although I have not been able to meet him as I have 2 young children under 4 years old and I just can’t get to Queen Park, I think of him often and thank him so much for what he is doing as I know (and hope and pray) his efforts will have an impact on my young child. I’m going to see my MPP next week to bring him up-to-date with everything “autism” and the growing IBI wait-list that Matthew’s name has been on for 2 years.
I had no Idea this was going on Until your e-mail of a couple of days ago... No I don't have much time for the media etc... My heart goes out to this gentlemen....When he was disappointed about the turn out today.... You were right when you said to him that people were there behind him five times in spirit... I say much more... I have been moved and touched by his courage and spirit....as I sit here and look at my 12 year old Son and what Stefan is doing for us all...God Bless him.
We want to show our support but can't be there in person; what other way could we do this? - an e-mail signature for the petition? Phone the premier's office? Please let us know whatever's best. If I don't hear back (I'm sure you will be pretty busy) I will try calling the Premier's office.
A parent I know wondered if he needed a job and she was going to try to connect with him regarding his husband’s company. So there is a good community of support. That has clearly occurred already from so many caring parents, and professionals as well.
I watched the CTV report on the amazing man at Queens Park... very moving.
Please give my best to Stefan too and my regrets that I cannot possibly be there today!!!
Once again distance prevents me from being physically present to support the efforts of Stefan Marinoiu and the many others who are fighting for the rights of autistic children. Please accept this email as confirmation of my support and if possible add my name via this email to Mr. Marinoiu's petition.
I am unable to attend Taline, but I will be certain to cross all my fingers and toes, that Stefan remains well in this time of hunger strike and whatever outcome will occur- affects all of us worldwide, and NOT just in Ontario.
Let Stephan know that we here in the (north) are thinking of him and wish him all the best and that I will pass on his request for Tuesdays rally to all my email friends.
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And this is a letter that was sent by a grandparent to a number of politicians including the Premier:
To all Ontario Politicians May 12th, 2008
Can any of you politicians try to explain what you are doing about the epidemic that is going on in Ontario. AUTISM, Autism, AUTISM, Autism, AUTISM.
You were elected to do a job for all the Citizens of Ontario.
Stefan Marinoiu along with lots of other parents/grandparents believe that our children with Autism deserve your full attention as they are citizens of Ontario.
We understand that Autism is a big issue and that one solution will not fix all the problems associated with it.
Take one step at a time, and show parents/grandparents that you are trying to do what is right for all Citizens of Ontario.
As Senator Jim Munson has stated Pay Now or Pay Later, one way or another Ontario is going to pay, the later way will cost a lot more.
The simple solution that can be in place by September 2008 is:
• Stop paying rent for basements and industrial buildings, as this is a huge waste of money that could be used to educate more children with Autism.
• Start using the empty classrooms of the existing schools.
The benefits of this solution are:
• Stefan Marinoiu may not have to DIE to get action from the Provincial Government on Autism.
• Rental money could be used where it should be used. Education!!!
• The Autistic wait list would be reduced.
• Teachers and Registered Autistic Therapists would learn from each other on how best to deal with both sides issues, they are the true experts on Autism.
• Autistic children would then have a place to play with the other children during recess with the supervision of their therapist present.
• We all know that the social aspect of life it just as important.
• They would not become ATTIC Children/Adults, we tried that process many years ago, lets not go down that road again.
There are so many benefits to going down this road and it is a simple solution that you can make immediately just by making the announcement. This would give a lot of parents/grandparents hope that the elected govenment is willing to try to deal with the issue of Autism.
Please do something positive before it is too late for Stefan Marinoiu.
Thank you
xxxxxx xxxxxxx
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You can send a letter to the editor of the Star at lettertoed@thestar.ca You would have to include the article or in this case, the editorial you are writing in response to, and your name, full address, and phone number.
I think that all of us know that the reason the government ended the age six cut-off was because of a superior court decision for which families fought long and hard to achieve. Although the court of appeal later reversed this decision, the program has continued to operate without the age discrimination but it was the court that called for removing the age cut-off, not the good will of our government as this and many other media report.
Star
EDITORIAL
No easy answers in autism debate
May 15, 2008
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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London Free Press
By Antonella Artuso, QUEEN'S PARK BUREAU CHIEF
Dad pledges hunger strike in fight for autistic children
Wed, May 14, 2008
TORONTO -- A father who started a liquids-only hunger strike 10 days ago says he won't give up his protest until his 15-year-old son, and all autistic children, get the treatment needed to live a fuller life.
Stephan Marinoiu said his mortgage payment comes due today and he's $400 short, but he'll move his family onto the front lawn of Queen's Park if necessary to secure Intensive Behavioural Intervention (IBI) for his son Simon.
"Children are our riches; they're our gold," said Marinoiu, a father of three.
NDP MPP Andrea Horwath said record numbers of children are on the waiting list for provincially-funded autism services, despite the assurances of Dalton McGuinty's government more is being done.
"Stephan really is the face of parental anguish and sheer frustration here in Ontario."
Bruce McIntosh of the Ontario Autism Coalition said parents are often put under enormous financial pressure to provide IBI out of pocket -- $20,000 a year for a 20-hour-a-week program and up to $70,000 a year for a full-time program -- and many can't afford it.
Marinoiu said his son has never made it off the waiting list for services and now, without support, he poses an increasing physical threat to his family.
McIntosh said his organization conducted an on-line poll of families with autistic children and found 47 per cent had liquidated assets, 62 per cent had borrowed money, 11 per cent received charity and 4.2 per cent had declared bankruptcy.
"And so this premier and these ministers, who have declared a war on poverty, are driving the families of children with autism into bankruptcy at 21 times the rate of the general population," McIntosh said. "And that, my friend, is failure."
There are more than 1,000 children on the waiting list today compared to fewer than 80 in 2003, McIntosh said
In the legislature yesterday, Horwath challenged Children and Youth Services Minister Deb Matthews to clear the backlog for autism services.
"Why has the McGuinty government driven a desperate parent to stage a hunger strike over the lack of publicly funded treatment for children with autism?" Horwath asked.
Matthews said she has twice met with Marinoiu in the last few days and her ministry staff are working hard to provide his family with appropriate support.
"I will tell you what I told Mr. Marinoiu, and that is this: we are working as hard as we can," Matthews said. "I urge him to stop his hunger strike, to go back to his family."
The minister said her government has more than tripled funding for IBI. The budget has swelled from about $500,000 just 10 years ago to more than $150 million.
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You can send letters to the editor of Toronto Sun here: editor@tor.sunpub.com
Toronto Sun
Hunger Strike Won't Waver
May 14, 208
By: Antonella Artuso
A father who started a liquids-only hunger strike 10 days ago says he won't give up his protest until his own 15-year-old son, and all autistic children, get the treatment they need to live a fuller life.
Stephan Marinoiu said his mortgage payment comes due today and he's $400 short, but he'll move his whole family onto the front lawn of Queen's Park if necessary to secure intensive behavioural intervention (IBI) for his son Simon.
"Children are our riches, they're our gold," said Marinoiu, a father of three.
NDP MPP Andrea Horwath said record numbers of children are on the waiting list for provincially funded autism services, despite public assurances by Dalton McGuinty's government that more is being done.
"Stephan really is the face of parental anguish and sheer frustration here in Ontario," Horwath said.
Bruce McIntosh of the Ontario Autism Coalition said parents are often under enormous financial pressure to provide IBI out of pocket -- $20,000 a year for a 20-hour-a-week program and up to $70,000 a year for a full-time program -- and many can't afford it.
Children and Youth Services Minister Deb Matthews said she has twice met with Marinoiu in the last few days and her ministry staff are working hard to provide his family with appropriate support.
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Guelph Mercury
Mental health services for children lacking
May 14, 2008
Chris Margetson
Dear Editor - Stefan Marinoiu, 49, the father of a youth with autism is on a hunger strike at Queen's Park to bring attention to children and youth with autism who are unable to qualify for the treatment they need.
In my work, I receive daily calls from parents at the end of their rope -- some contemplating suicide -- wondering if they should give up custody of their fetal alcohol spectrum disorder or autistic children or children with other mental health problems.
Parents are foundering with the financial, emotional and health issues, the result of raising children with any number of mental health and/or developmental disabilities.
Children with fetal alcohol spectrum disorder are usually not eligible for developmental services, due to the lack of appropriate, accurate tools mandated by the province to use in assessing their abilities. Hundreds of foster children across the province do not receive accurate assessment, diagnosis and treatment for their disabilities, many due to the lack of resources in the child-protection field.
These children must be ready before or at age 18 to live independently, without family support. And anything that may prevent this is often ignored. There are not enough resources in this system to support many children past this age of independence, whether they are actually ready for this or not.
Early-intervention programs and services that are meant to provide support and service to younger children with special needs have extremely long wait lists and are not even close to meeting the need.
March's provincial budget did not provide any new money for child-welfare services, children's mental health and developmental services, children's treatment centres or any of the programs funded by the Ministry of Children and Youth Services.
Children with autism, fetal alcohol spectrum disorder or other mental health or developmental problems were just pushed to the side again. Their families are stressed to the limit and no one seems to care.
The Canada Health Act does not include mental health services in any meaningful way, and the federal government has, since 1992, been eroding the transfer payments to provinces for use in funding these services.
Families with autistic children, those with fetal alcohol spectrum disorder and other mental-health issues have been organizing, lobbying, writing letters and begging for help for years. We are just not being heard.
Our children deserve better than this. One in five children in Ontario desperately need these services.
In the wake of last week's Children's Mental Health Services Week, I ask that we do something now before these children become adolescents and adults who live on the street, are institutionalized, are unable to maintain employment or are suffering addictions and are alienated from their families and communities.
We are all failing these children and must do something now.
-- Chris Margetson, senior fetal alcohol spectrum disorder consultant, Guelph
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An excellent piece by our Nancy!
CityNews
CityNews Exclusive: A Mother Reveals What Having An Autistic Child Does To A Family
Tuesday May 13, 2008
By Nancy Morrison, Special To CityNews.ca
Autism. It's not a big word but it represents big problems. Autistic children can't relate to society or communicate properly, leaving them unprepared for a world where all such social interaction and networking seems to whiz by at the speed of light.
For the families of these loving but troubled kids, it's a nightmare that's emotionally draining, spiritually difficult and financially impossible. Here, in a CityNews.ca exclusive, is the story of one mother living this existence, an articulate and sensitive woman trying to put into words what her own child may never be able to express.
My name is Nancy Morrison and I am the parent of 9-year-old twins. One of my twins was diagnosed with autism when he was just 3 years old.
Autism not only affects the child, it affects the entire family. The continual challenge to your patience is extremely hard to deal with. We are fortunate that our son makes it through the night sleeping - many others don't. But our son wakes us to screams and temper tantrums at 6:15 to 6:30 every day. You have no chance to get any rest past that time of the morning.
Once our son is settled with breakfast, and dressed for the day, things usually settle somewhat, as long as he is constantly engaged in activities to keep him occupied. If not, we all suffer the consequences. Children with autism cannot "do" downtime. They are often runners. If you go into any home of an ASD child, you will see locks lining all the doors and windows.
When out in public, a person with autism is often overwhelmed with all the sensory issues they experience. The lighting in most stores is hard on them, the noises are coming at them all garbled and confusing, and you will often see a child with autism unable to handle all the sensory input and end up in a meltdown. This can be anything from yelling and screaming, dropping to the ground and rolling, or running away.
Too often we have had people comment on our son's behaviours, not understanding why he is having such a difficult time. So not only are you trying to help your child, you are then left to enlighten those around you as to why your child is behaving the way they are, or hold your head high and move on as you are brought to tears from the hurtful comments and stares.
Then there are the financial hardships that autism brings to a family. Wait lists for funding for interventions (IBI/ABA) and respite are years long. Yet all the experts tell us that the earlier you can offer interventions, the better outcome your child will have. So most families do whatever they have to in order to afford hiring ABA therapists.
We have had to re-mortgage our home 5 times in the past 6 years in order to pay for the expenses that autism has brought us. Our personal expenditures are now over $120,000. Thankfully, we now receive partial funding for ABA, but that could be pulled away from us at any time; a stress that is just too much for anyone.
If your ASD child is doing well in IBI/ABA, then the funding is taken away, and children regress without this much-needed intervention. If your child is not doing well enough, the funding is taken away, your child deemed a write-off. It's torture to live with this type of threat dangling over your family finances.
Families are left with a choice - to go into extreme debt or to write your child off. No parent can do that, or should ever be expected to do that. When you see an intervention that is effective in over 95 per cent of children, with over 45 per cent being able to function typically in a classroom, you do whatever it takes to provide that to your child. The alternative is unthinkable.
When a child enters school, then more problems and stressors enter into the picture. Schools are ill equipped to handle children with autism, and with the alarming rate of 1 in 150 children now being diagnosed, most every school in this province have one or more children with autism now.
Minimal training of two days of an 'intro to autism' and ABA interventions are now offered to less than 4 per cent of educators. Parents and IBI/ABA professionals face a systematic discrimination when trying to guide educators in working with our kids; the professionals are not allowed into the schools. So many families with autism end up fighting with administrators, teachers and EA's, not out of choice but out of need to see their children get an education.
My son has his personal struggles, trying to navigate our world, when his ability to communicate with us, understand social situations and behaviours all challenge him. He desperately wants to have friends call on him or ask him over for play dates, but due to his challenges this has never been a joy he experiences.
When his sister has a play date, we are left to pick up the pieces with our ASD son and his hurt feelings. His sister is left feeling guilty that she has friends and an active social life.
Dealing with the demands of an ASD child, along with the long hours we all have to work to make enough money to pay for the expenses, leave most parents suffering from extreme exhaustion. Lobbying with our politicians for improvements to funding and services, with our school staff and administrators to make sure our kids are safe at school and receive an education, takes it toll. All this stress and exhaustion leaves no energy left for keeping a marriage happy. Statistics show that marriages where there is a child with an ASD are ending in divorce at the alarming rate of 80-90 per cent.
It is also difficult for parents to accept that their children, who for the first few years of life seemed healthy and typical, regress into a world of their own. Parents always hold high hopes for their children's successes in life. When you have a child with autism, your hopes change to ensuring your child ends up able to contribute to society instead of being a burden to society for the rest of their lives.
The future for our children with autism is bleak. What will happen to our children when we are gone or no longer able to care for them? Adult assisted housing has waiting lists years long, and only about 10 per cent of adults needing assisted living is able to find it. Financial aids for those unable to work ensure our children will live below the poverty line for the rest of their lives. But the expenses now leave little opportunity for families to take on any financial planning for their future.
Extended family and friends also have a hard time dealing with the challenges a child with autism brings. Our families are often left feeling lonely and abandoned with little assistance to help them along the journey of raising a child with autism. This feeling of isolation and abandonment can bring parents to a breaking point.
I can fully understand why Stefan Mariniou was brought to a point of doing his hunger strike. His strike is not just to get some help for his 15-year-old son. It is being done to ensure other families don't suffer like his has been suffering. It's a desperate move, and a very sad day when someone has to risk their health and lives to ensure their family is taken care of in our society.
My daughter met Stefan last Friday evening, and she told me when we left that she has a new hero in her life.
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You can watch the CityNews TV segment here: http://www.citynews.ca/news/news_22663.aspx
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Brantford Expositor
Father of autistic son continues hunger strike
May 13, 2008
A Toronto man who has been on a hunger strike for over a week is demanding the province eliminate the backlog of autistic children waiting for a crucial but costly therapy.
Stefan Marinoiu, 49, will call on the government today to move more quickly to provide treatment for children with autism, including his teenage son.
He wants to see the wait list of more than 1,100 autistic children who are eligible to receive intensive behavioural intervention therapy, or IBI, eliminated by November.
Marinoiu also wants the province to commit to providing the treatment in schools no later than September next year.
Education Minister Kathleen Wynne says thousands of people have already been trained to provide another kind of therapy, called applied behavioural analysis, in schools.
She says some schools have therapists to provide the more intensive IBI therapy, but not in regular classrooms.
From Talines List
First, a powerful piece from CTV. This is the segment from last week: http://www.youtube.com:80/watch?v=8xiEpg-Vuk4
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Canadian Press
May 13, 2008
Families of autistic kids demanding Ont. eliminate wait list for treatment
TORONTO — The father of an autistic teenager who has camped out at the Ontario legislature for more than a week is vowing not to eat until the province agrees to eliminate the backlog of children waiting for a crucial but costly therapy.
Stefan Marinoiu, 49, who has been drinking nothing but water for eight days, is trying to put pressure on the province to deliver the treatment more quickly to autistic kids, including his 15-year-old son Simon.
"He can hurt all of us when he has those violent tantrums which, of course, come out of his frustrations not being able to communicate with us," said Marinoiu, who had to quit his job a few years ago to help care for his son.
"It's a pretty bad situation. I'm getting weaker, I'm getting older, and I cannot hold on (to) him anymore."
Marinoiu will be joined by other parents Tuesday to put pressure on the province to eliminate by November the wait list of 1,148 eligible autistic children who are still waiting to receive intensive behavioural intervention therapy, or IBI.
The group will also be asking the government to provide IBI treatment in schools no later than September 2009, as well as obtain guidelines and financial assistance from Ottawa for autism services.
But Education Minister Kathleen Wynne said she can't make those promises, although the province is working to make schools more accessible to autistic children.
"My heart goes out to people who have these very special and severe needs," she said.
"We will continue to work with the family to provide the resources in the school that this student needs."
Thousands of teachers and support workers are currently being trained to provide another kind of therapy, called applied behavioural analysis, in schools, Wynne added.
Some schools already have therapists to provide the more intensive IBI therapy, but not in regular classrooms because the one-on-one treatment works better in a separate space, she said.
The province has also boosted funding and almost tripled the number of children receiving IBI treatment to more than 1,400 as of March 31, said Children and Youth Services Minister Deb Matthews. The list of children waiting to be assessed to see if they are eligible to receive IBI has also dropped to 363 from 1,027 four years ago.
Marinoiu said he's been unable to obtain services to help care for his son, who was dropped from the wait list after he surpassed the cut-off age of six.
The Liberals eliminated that cut-off threshold in 2005, but say a dramatic increase in the number of children with autism has put additional pressure on the system, causing wait lists to grow.
The number of children waiting for IBI has jumped to 1,148 at the end of March from 89 in early 2004. Critics point to the rising numbers as proof the province isn't serious about giving autistic children the help they need.
Marinoiu's hunger strike is just one indication of the distress parents are feeling, said Conservative critic Elizabeth Witmer.
"It's another broken promise," she said. "The premier promised one thing. It's simply not happening."
The long waits have forced many parents to drain their savings and go into debt to pay for the therapy, said NDP critic Andrea Horwath.
"Here we are, years down the road, and we still have the same situation," she said.
"Parents are still going bankrupt. Parents are still extremely frustrated with the lack of available services. Parents still are fearful of trying to transition their kids into school, knowing darn well that the services aren't available in the school either."
Without help, Marinoiu said his family may be forced to put his son in an institution - something he refuses to do.
"I don't have a life anymore and I've got nothing to lose," he said. "So I'm going to stay here until the government is going to get it."
A number of families of autistic children are still waiting to see if they will be able sue the Ontario government and seven school boards for damages over funding for specialized treatment.
The group argues the province discriminates against autistic children because they can't always get both their therapy and education within the public school setting.
The Ontario Court of Appeal, which heard the case in February, is expected to release its decision this summer.
An estimated 50,000 children and 150,000 adults in Canada have autism.
--------------------------------------------------------------
I'm curious as to whether anyone else caught the play with numbers about the waitlist in this one...
London Free Press
Teen's father on hunger strike
Tue, May 13, 2008
AUTISM
By THE CANADIAN PRESS
TORONTO -- An autistic teenager's father, who has camped out at the Ontario legislature for more than a week, is vowing not to eat until the province agrees to eliminate the backlog of children waiting for a crucial but costly therapy.
Stefan Marinoiu, 49, who has been drinking nothing but water for eight days, is trying to put pressure on the province to deliver the treatment more quickly to autistic kids, including his 15-year-old son Simon.
"He can hurt all of us when he has those violent tantrums which, of course, come out of his frustrations not being able to communicate with us," said Marinoiu, who had to quit his job to help care for his son. "It's a pretty bad situation. I'm getting weaker, I'm getting older, and I cannot hold on (to) him any more."
Marinoiu will be joined by other parents today to put pressure on the province to eliminate by November the wait list of 1,148 eligible autistic children yet to receive intensive behavioural intervention therapy.
The group will also be asking the government for IBI treatment in schools no later than September 2009, as well as obtain guidelines and financial assistance from Ottawa for autism services.
But Education Minister Kathleen Wynne said she can't make those promises, although the province is working to make schools more accessible to autistic children.
"My heart goes out to people who have these very special and severe needs," she said. "We will continue to work with the family to provide the resources in the school that this student needs."
Thousands of teachers and support workers are currently being trained to provide another kind of therapy, called applied behavioural analysis, in schools, Wynne added.
Some schools already have therapists to provide the more intensive IBI therapy, but not in regular classrooms because the one-on-one treatment works better in a separate space, she said.
The province has also boosted funding and almost tripled the number of children receiving IBI treatment to more than 1,400 as of March 31, said Children and Youth Services Minister Deb Matthews (London West). The list of children waiting to be assessed for eligibility to receive IBI has also dropped to 363 from 1,027 four years ago.
Marinoiu said he's been unable to obtain services to help care for his son since he surpassed the cutoff age of six.
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London Free Press
Interactive Letters
May 12, 2008
Letter to Editor
UNLESS otherwise noted, these submissions are to be considered unedited. The opinions expressed in the submissions and comments are those of the writers and not of The London Free Press.
strikes
Hunger Strike at Queen's Park
Right now there is a man sitting on a lawn chair at Queen's park, choosing to starve. On May 4.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. Stephan is frustrated because despite lawsuits, court decisions, and some politically motivated claims to the contrary, for some reason our provincial government is not interested in providing appropriate services for autistic children.
This man, like many others is almost completely financially ruined because he must pay for private services for his child. Soon he will have no money and his child will receive no help. In our country, with all our rights, freedoms and financial resources, this man has no other choice but to starve himself in public just so some one will care about the plight of autistic children.
I would find it almost unbelievable but you can see a video of him at the following link: http://www.ontarioautismcoalition.com/ As a education consultant and advocate I see the massive indifference towards the needs of autistic children on a daily basis. The wait lists are long, and the lack of help offered to autistic children is disgusting. The parents of these children have been begging for help for years to no avail.
The starving father, Stefan, has asked the following from the provincial government:
(1) The wait list must be eliminated by November 1.
(2) There must be ABA in schools.
(3) They need to work with the federal government to develop a national autism strategy and get more funding for Ontario and (4) Therapists need to be regulated.
Enough is enough. Lets end the tragedy of lack of services for children with autism.
POSTED BY: Dale Ford, Director Edu-Advocates Ottawa,, Stittsville
POSTED ON: May 12, 2008
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Torontoist
May 10, 2008
Striking Distance
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.”
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CTV southwestern Ontario
May 9, 2008
Father Camped out in front of Queen's Park
Stephan Marinoiu has gone on a hunger strike and is sleeping in the rain at Queen's Park.
His fifteen year-old son is autistic.
The Scarborough delivery-man can't afford the the specialized applied behaviour analysis treatment that would help him.
The minister in charge of children's services is promising to look into the case.
Stephan says he's now fighting for the thousands of kids who won't get help from the province. He wants the federal government to establish national funding for autism therapy.
From Taline
The article below is in many media outlets across Canada communicating Stefan's plight. I pulled this one from ctv.ca.
You can also watch a video of Stefan asking for the three things and for everyone to be there to support him tomorrow here on the OAC website: www.ontarioautismcoalition.com
Taline
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Father on hunger strike for better autism care
Updated Mon. May. 12 2008 11:50 AM ET
The Canadian Press
TORONTO -- A Toronto man who has been on a hunger strike for over a week is demanding the province eliminate the backlog of autistic children waiting for a crucial but costly therapy.
Stefan Marinoiu, 49, will call on the government Tuesday to move more quickly to provide treatment for children with autism, including his teenage son.
He wants to see the wait list of more than 1,100 autistic children who are eligible to receive intensive behavioural intervention therapy, or IBI, eliminated by November.
Marinoiu also wants the province to commit to providing the treatment in schools no later than September next year.
Education Minister Kathleen Wynne says thousands of people have already been trained to provide another kind of therapy, called applied behavioural analysis, in schools.
She says some schools have therapists to provide the more intensive IBI therapy, but not in regular classrooms.
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From Nancy’s List, blue fonts
Attached to this mailing are a few pdf files, one for the upcoming New Haven Conference "Autism Goes to Work" (see info at bottom of mailing), one for a Sexuality Workshop and the latest Run the Dream Newsletter.
-----------------------------
An exerpt from a listmates message update on Stefan from today:
I was with Stefan for about an hour and a half this afternoon. When I got there, he was talking to a large group of highschool students who were at QP on a tour. It was an incredible thing to watch, I tell you. He was explaining to these kids from the bottom of his heart about why he's doing what he's doing. He did such an excellent job of it that it brought me to tears. Their teacher had a visitors pass and told him that the group is going in to speak to someone in the building, did not mention names, but that they will be sure to ask about what's going on with autism and Stefan's hunger strike when they go in. When I left, another group of students had gathered around to listen to "Stefan's workshop".
Apparently, Stefan has been talking to a number of student groups. Some are as many as 60 students. The awareness that he is raising with these kids is so wonderful. These kids are going to be the future of our province and country. They will grow up to be VOTERS. Some of them will grow up to be politicians in power or work in other key decision making fields. What they are learning from Stefan is priceless.
He is doing well. His wife Bernadette was with him. ********** is going to help them complete the SSAH paperwork on Friday. I found out that the nurse ******* had arranged hadn't come to see him for a couple of days and went up to one of the guards and asked that a nurse from inside the building come out to examine him. Two nurses came and checked his blood pressure, glucose level, etc. He's doing fine.
and the listmates message went on to add this update:
Also, Peter Shurman came out and I asked if the conservatives can ask a question during question period this week about Stefan and he's going to try to do this tomorrow and told Stefan that he'd like him to be there in the gallery. We won't find out if they're going to ask until about 8:30 tomorrow morning afterwhich Peter is going to call me right away to let me know so that we can get the word out to the autism community asking that they come down and fill the gallery for this opportunity. The late notice is unfortunate but this is how question period works.
Unfortunately, I am not at my computer in the mornings to be able to update everyone on whether this question is happening or not, but tune into the Ontario Legislature Channel if you can to catch it. I will share the question if it goes as soon as Hansard is available tomorrow.
Hopefully some contacts can post on the Autism Ontario yahoo group, Kinark yahoo group or other such chat groups if they get confirmation of this question, to notify those that can get down to Queens Park to witness the Question in person.
---------------------------------
A listmate put together a compilation of articles resulting from yesterdays media event as of about 8 pm.
Please go in this link and enter your opinion for the poll of whether McGuinty is doing enough for children with autism: http://www.citynews.ca/polls.aspx?pollid=3858
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You can watch an OAC video of PC MPP Julia Munro making a statement about Stefan on May 8th here: http://youtube.com/watch?v=wsxoSxwB5UA&feature=user
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May 13, 2008
MPP ANDREA HORWATH'S REMARKS AT AUTISM PRESS CONFERENCE
teaser:
At a press conference with with hunger striker, Stephan Marinoiu, the parent of a child with autism, and Bruce McIntosh, Founder of Ontario Autism Coalition, Hamilton Centre MPP Andrea Horwath had this to say about the government's woeful record concerning autism treatment in Ontario.
body:
"Stephan Marinoiu has been driven to take desperate measures … because the McGuinty has failed to take appropriate measures to deliver on Dalton McGuinty's promise of September 2003.
Five years ago Dalton McGuinty promised autism treatment for all children regardless of their age.
Parents were hopeful. Now they are disillusioned, frustrated and even more downhearted over being betrayed.
Stephan exemplifies the anguish brought on by government inaction and apparent indifference to children with autism.
At a Town Hall meeting in March, one phrase kept cropping up: “Children rotting on the vine.”
Instead of actual service, the McGuinty government created a waiting list - a traffic jam of children whose needs aren't being met and whose potential diminishes with every week of waiting.
A new McMaster study has identified a breakthrough method of early detection at age 9 months. This should mean children can have earlier access to treatment.
Instead, there are record numbers of kids left untreated, languishing on the McGuinty wait list without professional supports, without respite for families, without therapy available in most schools and lacking the provincial resources to follow through.
Stephan is the face of parental anguish and sheer frustration.
Minister Matthews took me aside a few days ago and urged me to do something to stop Stefan's hunger strike.
This is an ironic request coming from the Minister in charge of Ontario's autism mess, the Minister who’s the one, along with the Premier, who can stop Stephan’s drastic action.
It's as simple as doing what her leader promised the Liberals would do.
And no amount of dancing is going to get around the commitment Mr. McGuinty made to these parents.
The McGuinty government spends millions fighting parents in court instead of on services for their children.
I feel the government is playing politics with the futures of these children.
Ignoring the situation makes responding in the future vastly more expensive. (the difference between nurturing a productive, functioning person and one who would require constant care.)
The message here today couldn't more clear.
Children with autism must receive treatment at the earliest juncture under OHIP. That’s the purpose of publicly funded health care.
Parents have made tremendous personal and financial sacrifices as a result of this government not living up to its word and putting an earnest plan in place to serve these children.
(Read from parent responses).
Our call today is for action, not excuses."
---------------------------------------------------------------------------------
From Hansard, today's question period.
May 13, 2008
AUTISM TREATMENT
Ms. Andrea Horwath: My question is for the Minister of Children and Youth Services, and it goes like this: Why has the McGuinty government driven a desperate parent to stage a hunger strike over the lack of publicly funded treatment for children with autism? And why has her government taken so long to clear the waiting list of over 1,500 children in this province? The question is very basic: When is this waiting list going to be cleared?
Hon. Deborah Matthews: Let me start by saying that I have met with Mr. Marinoiu twice in the last several days. I met with him on the front lawn of Queen's Park and then I met him in my office. I can assure you that my ministry staff are working hard with him and his family to make sure that that he is getting all of the supports that his family is entitled to.
I can tell you that I understand how important it is to him and to all parents who have children with autism that we continue to improve services for children with autism. I am absolutely committed to improving services for children with autism. The work that has been done by parents from all parts of the province on this issue continues to encourage us in our work to improve services for children with autism in this province.
Ms. Andrea Horwath: This minister knows that the reality is that the wait list in Ontario keeps on growing. Parents don't feel that their services are being improved at all. Stefan Marinoiu's hunger strike is a drastic action directly related to the fact that these parents don't think that services are improving in Ontario. Parents came from all over the province today to send this government a message that this life-and-death action that Stefan is taking is something they're here to support, because they need some action on this file and they need it now. Their children are languishing on waiting lists in Ontario. They're not getting the IBI, the intervention and the treatment that they need and deserve in this province. The government is indifferent to their needs.
After half a decade, why is nothing happening? Why is the McGuinty government not providing treatment for all of the children and all of the adequate supports that are required for their families?
Hon. Deborah Matthews: To suggest that nothing has been done is simply not accurate. Let's take a look at what we have done. Since we were elected, we have more than tripled the funding for IBI. We have almost tripled the number of children receiving IBI services. Ten years ago, the budget for autism services in this province was half a million dollars; today it's over $150 million. Ten years ago, no children in this province received IBI therapy; today over 1,400 children are receiving IBI therapy.
Do we still have work to do? Absolutely. Is our next step making schools a welcoming place for children with autism? Absolutely.
I will tell you what I told Mr. Marinoiu, and that is this: We are working as hard as we can. I urge him to stop his hunger strike, go back to his family-
The Speaker (Hon. Steve Peters): Thank you. New question
------------------------------------------------------
York Region News
Parents protest province's treatment of their autistic children
Regional News
May 13, 2008
By: Michael Power, Staff Writer
Will starving yourself in front of Queen’s Park make the government step up resources for autistic children?
That’s what one man — and the York Region residents supporting him — are hoping.
About 30 supporters gathered in front of Queen’s Park this morning in a show of support for Stephan Marinoiu of Scarborough, who has gone without food for a week in front of the legislature, trying to force the government to increase support for families of autistic children.
Mr. Marinoiu, 49, whose 15-year-old son, Simon, is autistic, began the hunger strike to get the government to eliminate, by Nov. 1, the waiting list for children to get specialized treatment for autism, known as intensive behavioural intervention or IBI.
He wants the province to commit to providing the treatment in schools, as well as ask for financial and organizational help from the federal government.
York Region residents were among those at the demonstration offering support to Mr. Marinoiu.
“I’m sad he’s had to go to this extreme,” said Taline Sagharian of Richmond Hill, whose 11-year-old son, Christopher, has autism. “It’s an example of how desperate families can become.”
Still, Ms Sagharian could not say if Mr. Marinoiu’s efforts would force the province to honour his requests.
“I honestly don’t know,” she said. “I can tell you what I hope and that’s for the premier to step in and help.”
Ms Sagharian is also a plaintiff in a class action suit against the ministries of Education and Children and Youth Services and seven school boards across Ontario. The suit is pushing the province to provide or fund IBI in schools and without excessive delays.
Now, the province is only treating 11 per cent of children who would benefit from IBI, said Mr. Marinoiu, whose lips and ears were chapped from nine days of wind and sun.
A two-tier system had evolved in which parents with enough cash could pay privately for IBI treatment, while the majority of families struggled to come up with the money without going bankrupt.
“I’m out here because the government’s performance until now has been ridiculous,” Mr. Marinoiu said. “The money is in the system. It’s not rocket science, all they have to do is collaborate between ... ministries.”
Mr. Marinoiu said he planned to continue the hunger strike for a full year. He would continue until he was too weak, then his wife would take over. Their 15-year-old daughter also plans to participate.
“By that time, I’ll have recuperated and I’ll be right back in (the government’s) face.”
--------------------------------------------------
Sarnia Observer
May 13, 2008
Families demand wait list removal
The father of an autistic teenager who has camped out at the Ontario legislature for more than a week is vowing not to eat until the province agrees to eliminate the backlog of children waiting for a crucial but costly therapy.
Stefan Marinoiu, 49, who has been drinking nothing but water for eight days, is trying to put pressure on the province to deliver the treatment more quickly to autistic kids, including his 15-year-old son Simon.
"He can hurt all of us when he has those violent tantrums which, of course, come out of his frustrations not being able to communicate with us," said Marinoiu, who had to quit his job a few years ago to help care for his son.
"It's a pretty bad situation. I'm getting weaker, I'm getting older, and I cannot hold on (to) him anymore."
Marinoiu will be joined by other parents Tuesday to put pressure on the province to eliminate by November the wait list of 1,148 eligible autistic children who are still waiting to receive intensive behavioural intervention therapy, or IBI.
The group will also be asking the government to provide IBI treatment in schools no later than September 2009, as well as obtain guidelines and financial assistance from Ottawa for autism services. But Education Minister Kathleen Wynne said she can't make those promises, although the province is working to make schools more accessible to autistic children.
"My heart goes out to people who have these very special and severe needs," she said.
"We will continue to work with the family to provide the resources in the school that this student needs."
Thousands of teachers and support workers are currently being trained to provide another kind of therapy, called applied behavioural analysis, in schools, Wynne added.
Some schools already have therapists to provide the more intensive IBI therapy, but not in regular classrooms because the one-on-one treatment works better in a separate space, she said.
The province has also boosted funding and almost tripled the number of children receiving IBI treatment to more than 1,400 as of March 31, said Children and Youth Services Minister Deb Matthews. The list of children waiting to be assessed to see if they are eligible to receive IBI has also dropped to 363 from 1,027 four years ago.
Marinoiu said he's been unable to obtain services to help care for his son, who was dropped from the wait list after he surpassed the cut-off age of six.
The Liberals eliminated that cut-off threshold in 2005, but say a dramatic increase in the number of children with autism has put additional pressure on the system, causing wait lists to grow.
The number of children waiting for IBI has jumped to 1,148 at the end of March from 89 in early 2004. Critics point to the rising numbers as proof the province isn't serious about giving autistic children the help they need.
Marinoiu's hunger strike is just one indication of the distress parents are feeling, said Conservative critic Elizabeth Witmer.
``It's another broken promise,'' she said. ``The premier promised one thing. It's simply not happening.''
Without help, Marinoiu said his family may be forced to put his son in an institution something he refuses to do.
``I don't have a life anymore and I've got nothing to lose,'' he said. ``So I'm going to stay here until the government is going to get it.''
--------------------------------------------------------------------------------------------------
Here is a Canadian Press article from a week ago which illustrates the long waitlist, I don't believe it was shared previously. ctv.ca
Long list of autistic kids need therapy: critics
Tue Apr. 29 2008
The Canadian Press
TORONTO — Ontario's self-described "Education Premier'' is doing little to clear the growing backlog of autistic children waiting for a crucial but costly therapy, critics charged Tuesday.
The wait list of autistic children who are eligible to receive intensive behavioural intervention therapy, or IBI, reached 1,148 on March 31, up from 985 last year.
More than 1,400 children were receiving IBI services as of March 31, according to newly released government figures.
But the long waits have forced many parents to drain their savings and go into debt to pay for the therapy the province has promised to provide, said NDP critic Andrea Horwath.
The government is moving at such a "glacial pace'' to get kids off the waiting list that many parents are worried their children won't get the service they need in time, she added.
"They feel that their children are rotting on the vine,'' Horwath said.
"Those are the words that more than one group of parents used at a town hall meeting about a month ago. That's a frightening and horrifying thing for a parent to have to admit.''
The wait list is getting longer because the province is putting more money into providing therapy for autistic children, said Premier Dalton McGuinty.
"We've tripled the funding in the last four years, we've doubled the number of children who are being served, and we're bringing therapy into the classroom for the first time,'' he said.
"So I think we're making some real progress, but obviously there's more to be done.''
Teachers and support workers are currently being trained to provide another kind of therapy, called applied behavioural analysis, in schools, said Education Minister Kathleen Wynne.
Some schools already have therapists to provide the more intensive IBI therapy, but not in regular classrooms as the one-on-one treatments work better in a separate space, she said.
Children and Youth Services Minister Deb Matthews said the province has moved "aggressively'' to improve services, such as funding summer camps for autistic kids.
While the government is working towards providing IBI in schools, it "won't happen overnight,'' she said.
During last fall's election campaign, both the Progressive Conservatives and NDP vowed to clear the province's wait list. McGuinty wouldn't make a similar commitment, but the Liberals pledged $10 million for schools to deliver IBI therapy if re-elected.
"It's another broken promise by the Liberal government,'' Opposition Leader Bob Runciman said Tuesday.
"It's a significant problem for many, many families, and they're ignoring it at the moment.''
The lives of autistic children can drastically improve if IBI therapy is started early enough, said Taline Sagharian, whose 11-year-old son is autistic.
"The whole point is it's supposed to be started at an early age,'' she said.
"I don't know how that's going to be possible if the children are going to be sitting on a wait list for years and years.''
The New Democrats say most of the money is being spent to train principals and administrators on how to plan to provide the specialized therapy, rather than providing additional services for children.
"Without that IBI treatment or ABA treatment, their children fall further behind,'' said NDP Leader Howard Hampton. "So these parents just feel absolute desperation.''
Five families, including Sagharian's, are still waiting to see if they will be able sue the Ontario government and seven school boards for damages over funding for specialized treatment for autistic kids.
The group argues the province discriminates against autistic children because they can't always get both their therapy and education within the public school setting.
The Ontario Court of Appeal, which heard the case in February, is expected to release its decision this summer.
An estimated 50,000 children and 150,000 adults in Canada have autism.
--------------------
New Haven Conference, register quickly to get your free spot!!!!
We are pleased to announce our 9th annual conference entitled Autism Goes to Work on Friday June 6th 2008.
Speakers include world renowned Dr. Bridget Taylor, Executive Director of the Alpine Learning Group, Dr. Wendy Roberts, Developmental Paediatrician at the Hospital for Sick Children, Audrey Meissner, Clinical Director of New Haven, and many more!
Please see attached brochure for more information. Please note that the first 120 parents of children with autism come for free!
***********
Autism Ontario Halton Events
Dr. Mel Rutherford, Ph.D, Associate Professor in the Department of Psychology, Neuroscience and Behaviour, and Canada Research Chair in Social Perception
Early Autism Study will be presented at the IMFAR this weekend
PRESS RELEASE
MCMASTER UNIVERSITY DEPARTMENT OF PSYCHOLOGY, NEUROSCIENCE AND BEHAVIOUR DEVELOPING A FAST & OBJECTIVE SCREENING TOOL FOR THE EARLY DETECTION OF AUTISM
McMaster University’s “Early Autism Study,” headed by Dr. Mel Rutherford, is showing progress towards the development of a fast and objective screening tool for autism in a child’s first year. Dr. Rutherford is presenting this peer-reviewed research on May 14th at the International Meetings for Autism Research in London , England .
Using eye tracker technology, and an innovative design, the Early Autism Study has been able to reliably distinguish a group of babies who are high-risk for autism from a low-risk group as early as 9 months of age! Unlike other attempts at developing early screening for autism, this test is fast and objective. Data collection takes 10 minutes (on each of 4 visits in the first year) and it is objective, because it relies on eye-tracker measurement of eye direction, while the babies looks at faces and eyes and balls “playing” on the computer screen.
Currently, the earliest diagnostic test for autism is reliable around the age of two, and most children in Ontario are diagnosed around the age of three or four. An earlier autism diagnosis followed by appropriate treatment consistently leads to improved overall prognosis. Therefore, there is an urgent need for a quick, reliable and objective screening tool to aid in diagnosing autism much earlier than is presently possible. Developing a tool for the early detection of autism would have profound effects on people with autism, their parents, family members, and future generations of those at risk of developing autism.
To schedule an interview with Dr. Rutherford please call (905) 525-9140 x26032.
More information about the Early Autism Study can found on the study website: www.earlyautismstudy.com.
Contact Details
Lalaine Mina
Lab Manager, Rutherford Lab
McMaster University
Department of Psychology, Neuroscience and Behaviour
1280 Main Street West
Hamilton Ontario L8S 4K1
(905) 525-9140 x26032
Media coverage over the next few days on Dr. Mel Rutherford’s research on diagnosing autism at an early stage:
Thursday, May 15th
12 noon – CBC Radio’s Ontario Today
5:30 p.m. – Global National News – report by Jennifer Tryon
6 p.m. – CTV Toronto – report by Monica Matys; CHCH news – report by Scott Urquhart
11 p.m. – CTV National News – report by Avis Favaro (also runs at 10 p.m. on CTV Newsnet)
Friday May 16th
7 – 9 a.m. – Canada AM – Mel Rutherford will do the interview from CTV’s bureau in London, UK
Saturday, May 17th
12 p.m. – CBC Radio’s Quirks & Quarks
Print interviews which will run Thursday/Friday
Globe and Mail, CanWest News Service, Hamilton Spectator, The Daily Telegraph
The same talk will be given on the 28th in Burlington:
"The Development of a Fast and Objective Screening Tool for Early Autism"
Wednesday, May 28, 2008
7:00 pm
Theatre Burlington, Drama Centre
2311 New Street, Burlington ON
The talk on May 28th is brought to you by: Autism Ontario Halton, Autism Ontario Hamilton, Canadian National Autism Foundation, McMaster University and the Rutherford Lab. For flier for the talk on the 28th you can print out, post & distribute:
http://www.asohalton.org/Dr%20Rutherford%20May%2028%20-%20poster.pdf
See the Autism Community Calendar - Halton & Surrounding Area for Media Coverage re: the talk she will give at the International Meeting For Autism Research (IMFAR)
http://www.asohalton.org/commcalendar.htm
The International Meeting For Autism Research (IMFAR)
http://www.autism-insar.org/index.php?option=com_content&task=view&id=25&Itemid=96
http://www.autism-insar.org/index.php?option=com_content&task=view&id=28&Itemid=79
For more information see the Early Autism Study site:
http://www.earlyautismstudy.org/index.html
A bit from the Early Autism Study site:
We want to find early signs of autism. This study started in the spring of 2005, after a couple of years in development. We have only just begun to have enough data from which to draw any conclusions. The exciting thing is that our early results indicate that the measures work! Our ultimate goal is to be able to predict which of the young babies visiting our lab will develop autism, but in order to do that, we need more people to participate. Do you have a young baby, early in his or her first year of life? We are especially interested in babies who have autism in the family. Does your baby have a sibling with autism? Come visit our lab, or we can visit you! Join the Early Autism Study!
______________________________________________________________________________________
T:905-631-1233 F:905-631-1033 560 Guelph Line, Lower Level, Burlington, ON L7R 3M4
Disclaimer: It is important to do your own research and make your own informed decisions. Please note Autism Ontario does not endorse any specific therapy, product, treatment, strategy, opinions, service, or individual. We do, however, endorse your right to information.
Google Alert
http://lfpress.ca/newsstand/News/Local/2008/05/14/5560951-sun.html
Dad pledges hunger strike in fight for autistic children
By ANTONELLA ARTUSO, QUEEN'S PARK BUREAU CHIEF
TORONTO -- A father who started a liquids-only hunger strike 10 days ago says he won't give up his protest until his 15-year-old son, and all autistic children, get the treatment needed to live a fuller life.
Stephan Marinoiu said his mortgage payment comes due today and he's $400 short, but he'll move his family onto the front lawn of Queen's Park if necessary to secure Intensive Behavioural Intervention (IBI) for his son Simon.
"Children are our riches; they're our gold," said Marinoiu, a father of three.
NDP MPP Andrea Horwath said record numbers of children are on the waiting list for provincially-funded autism services, despite the assurances of Dalton McGuinty's government more is being done.
"Stephan really is the face of parental anguish and sheer frustration here in Ontario."
Bruce McIntosh of the Ontario Autism Coalition said parents are often put under enormous financial pressure to provide IBI out of pocket -- $20,000 a year for a 20-hour-a-week program and up to $70,000 a year for a full-time program -- and many can't afford it.
Marinoiu said his son has never made it off the waiting list for services and now, without support, he poses an increasing physical threat to his family.
McIntosh said his organization conducted an on-line poll of families with autistic children and found 47 per cent had liquidated assets, 62 per cent had borrowed money, 11 per cent received charity and 4.2 per cent had declared bankruptcy.
"And so this premier and these ministers, who have declared a war on poverty, are driving the families of children with autism into bankruptcy at 21 times the rate of the general population," McIntosh said. "And that, my friend, is failure."
There are more than 1,000 children on the waiting list today compared to fewer than 80 in 2003, McIntosh said
In the legislature yesterday, Horwath challenged Children and Youth Services Minister Deb Matthews to clear the backlog for autism services.
"Why has the McGuinty government driven a desperate parent to stage a hunger strike over the lack of publicly funded treatment for children with autism?" Horwath asked.
Matthews said she has twice met with Marinoiu in the last few days and her ministry staff are working hard to provide his family with appropriate support.
"I will tell you what I told Mr. Marinoiu, and that is this: we are working as hard as we can," Matthews said. "I urge him to stop his hunger strike, to go back to his family."
The minister said her government has more than tripled funding for IBI. The budget has swelled from about $500,000 just 10 years ago to more than $150 million.
From Taline’s List
All went well today and Stefan is feeling good. I plan to visit him again tomorrow. I'm amazed at what a rezilient man he is. His frustration with the system for 15 years has brought him to a place where he feels that is best to make a change. Many are concerned about his health and are watching him closely.
The turn out was nothing near what anyone would have expected, there was only a small crowd. I asked Stefan how he felt about this and he simply said that he knows that everyone is with him in spirit. What a champ. I told him that each person who showed up today is like 5 people in 1. I was so proud to be among some of the greatest advocates here in our province. People came from all over Ontario. Some drove 6 hours to be there while some drove in last night to sleep in the city and show up bright and early for the morning. I have received many emails from all over Canada of people wishing Stefan all the best and for him to know that they are with him all the way.
Laura McIntosh of the OAC spoke to the small crowd outside. She talked about how much work the coalition has done for the autism community and how they are in Queen's Park yet again to speak for so many who don't have a voice. Then, many of us headed inside for the media conference. Excellent turn out from media. City, Sun, Star, and other media outlets were present. Bruce McIntosh of the OAC, NDP MPP Andrea Horwath, and Stefan were the speakers at the media conference. All did a fantastic job. Stefan carried the audience through moments of tears and of laughter. His comment about the "wasting list" referring to the waiting list was ever so accurate. Then he asked once again for all three ministries to work together, Health, Education, and Social Services. He said that if they can't work together, they should seek help from the Ministry of Communication.
Bruce did an incredible job of communicating the information from the recent surveys that the OAC has been collecting. Here are some of the numbers:
parents who had liquidated assets (47%)
borrowed money (62%)
received money from charities (11%)
declared bankruptcy (4.2%)
Bruce compared this last figure to the bankruptcy rate in the general pop which is 0.2%. What a contrast!!! He said that the Premier is driving parents of children with autism into bankruptcy at 21 times the going rate. He pulled out a graph of the waitlist that illustrates the numbers as continually going up. He also responded to the number of ridiculous statements made by our government most recently in the media. Here are some of these statements:
"Any disagreement between parents of autistic children and the provincial government has been settled"
Minister Matthews
Dundas Star News
Response in a nutshell: NOT!
"The wait list is getting longer because the province is putting more money into providing therapy for autistic children."
Premier McGuinty
Canadian Press
Response in a nutshell: HUH???
Stefan is quite clear in his request for immediate attention to the autism issue. Unfortunately, during the question period when Ms. Horwath asked the question, we all heard the same old response. There's been progress and there's still more to do.
Many took the opportunity for today's event to thank Stefan for what he is doing. Personal stories were shared. Many gave Stefan money to help him and his family. There were tears, there was laughter, but most of all, there was a united decision that our advocacy must continue.
Unfortunately, Stefan is back to his hunger strike. There's just no stopping him. He is being watched by many caring parents in our community. There will be more in the media over the coming days including radio and I heard that there were a number of good pieces on the TV some of which were recorded and will be up soon.
Taline
-----------------------------------------------------------------------------------
Please go in this link and enter your opinion for the poll of whether McGuinty is doing enough for children with autism: http://www.citynews.ca/polls.aspx?pollid=3858
---------------------------------------------------------------------------------
You can watch an OAC video of PC MPP Julia Munro making a statement about Stefan on May 8th here: http://youtube.com/watch?v=wsxoSxwB5UA&feature=user
------------------------------------------------------------------------------
May 13, 2008
MPP ANDREA HORWATH'S REMARKS AT AUTISM PRESS CONFERENCE
teaser:
At a press conference with with hunger striker, Stephan Marinoiu, the parent of a child with autism, and Bruce McIntosh, Founder of Ontario Autism Coalition, Hamilton Centre MPP Andrea Horwath had this to say about the government's woeful record concerning autism treatment in Ontario.
body:
"Stephan Marinoiu has been driven to take desperate measures … because the McGuinty has failed to take appropriate measures to deliver on Dalton McGuinty's promise of September 2003.
Five years ago Dalton McGuinty promised autism treatment for all children regardless of their age.
Parents were hopeful. Now they are disillusioned, frustrated and even more downhearted over being betrayed.
Stephan exemplifies the anguish brought on by government inaction and apparent indifference to children with autism.
At a Town Hall meeting in March, one phrase kept cropping up: “Children rotting on the vine.”
Instead of actual service, the McGuinty government created a waiting list - a traffic jam of children whose needs aren't being met and whose potential diminishes with every week of waiting.
A new McMaster study has identified a breakthrough method of early detection at age 9 months. This should mean children can have earlier access to treatment.
Instead, there are record numbers of kids left untreated, languishing on the McGuinty wait list without professional supports, without respite for families, without therapy available in most schools and lacking the provincial resources to follow through.
Stephan is the face of parental anguish and sheer frustration.
Minister Matthews took me aside a few days ago and urged me to do something to stop Stefan's hunger strike.
This is an ironic request coming from the Minister in charge of Ontario's autism mess, the Minister who’s the one, along with the Premier, who can stop Stephan’s drastic action.
It's as simple as doing what her leader promised the Liberals would do.
And no amount of dancing is going to get around the commitment Mr. McGuinty made to these parents.
The McGuinty government spends millions fighting parents in court instead of on services for their children.
I feel the government is playing politics with the futures of these children.
Ignoring the situation makes responding in the future vastly more expensive. (the difference between nurturing a productive, functioning person and one who would require constant care.)
The message here today couldn't more clear.
Children with autism must receive treatment at the earliest juncture under OHIP. That’s the purpose of publicly funded health care.
Parents have made tremendous personal and financial sacrifices as a result of this government not living up to its word and putting an earnest plan in place to serve these children.
(Read from parent responses).
Our call today is for action, not excuses."
---------------------------------------------------------------------------------
From Hansard, today's question period.
May 13, 2008
AUTISM TREATMENT
Ms. Andrea Horwath: My question is for the Minister of Children and Youth Services, and it goes like this: Why has the McGuinty government driven a desperate parent to stage a hunger strike over the lack of publicly funded treatment for children with autism? And why has her government taken so long to clear the waiting list of over 1,500 children in this province? The question is very basic: When is this waiting list going to be cleared?
Hon. Deborah Matthews: Let me start by saying that I have met with Mr. Marinoiu twice in the last several days. I met with him on the front lawn of Queen's Park and then I met him in my office. I can assure you that my ministry staff are working hard with him and his family to make sure that that he is getting all of the supports that his family is entitled to.
I can tell you that I understand how important it is to him and to all parents who have children with autism that we continue to improve services for children with autism. I am absolutely committed to improving services for children with autism. The work that has been done by parents from all parts of the province on this issue continues to encourage us in our work to improve services for children with autism in this province.
Ms. Andrea Horwath: This minister knows that the reality is that the wait list in Ontario keeps on growing. Parents don't feel that their services are being improved at all. Stefan Marinoiu's hunger strike is a drastic action directly related to the fact that these parents don't think that services are improving in Ontario. Parents came from all over the province today to send this government a message that this life-and-death action that Stefan is taking is something they're here to support, because they need some action on this file and they need it now. Their children are languishing on waiting lists in Ontario. They're not getting the IBI, the intervention and the treatment that they need and deserve in this province. The government is indifferent to their needs.
After half a decade, why is nothing happening? Why is the McGuinty government not providing treatment for all of the children and all of the adequate supports that are required for their families?
Hon. Deborah Matthews: To suggest that nothing has been done is simply not accurate. Let's take a look at what we have done. Since we were elected, we have more than tripled the funding for IBI. We have almost tripled the number of children receiving IBI services. Ten years ago, the budget for autism services in this province was half a million dollars; today it's over $150 million. Ten years ago, no children in this province received IBI therapy; today over 1,400 children are receiving IBI therapy.
Do we still have work to do? Absolutely. Is our next step making schools a welcoming place for children with autism? Absolutely.
I will tell you what I told Mr. Marinoiu, and that is this: We are working as hard as we can. I urge him to stop his hunger strike, go back to his family-
The Speaker (Hon. Steve Peters): Thank you. New question
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CityNews
May 13, 2008
Father Of Autistic Child On 9th Day Of Hunger Strike 'Waiting For A Miracle'
Tuesday May 13, 2008
CityNews.ca Staff
Stefan Marinoiu is hungry for help, not to mention just plain hungry period. The Toronto man has spent nine long days on a hunger strike at Queen's Park. His campaign: shame the Liberals into changing their policies on funding for programs aimed at autistic children.
His battle is long and hard fought and the cost of failure is high. Autism is a syndrome that leaves kids unable to communicate or relate normally to the outside world. A program called IBI, or intensive behaviour intervention, is essential to giving kids with the problem even a chance to fit in to normal society.
But it's expensive. It can cost up to $60,000 a year and while the government recently removed a restriction that stopped payments for the treatment at age six, the waiting list has still grown.
According to the Ontario Autism Coalition, in 2003 there were only 79 autistic kids waiting for specialized therapy. Now, there are 1,058 children on that list and it's getting larger.
The coalition blames the Ontario government for not following through on a campaign promise to increase the funding for autistic kids. Enter Marinoiu and his refusal to eat until someone listens to him - and the thousands of desperate parents that he represents.
"I've been waiting for this for 15 years," the father of an autistic son explains. "For a miracle from the government. There is no two way about this. We have to make sure that those children get treatment." Marinoiu is taking his life in his hands with his actions - he's a diabetic and is supposed to eat regularly to maintain his blood sugar.
The Coalition blames the Ontario government for not following through on a campaign promise to increase funding for the kids affected with the problem and forcing many families into bankruptcy.
The woman responsible agrees more can be done, but feels the Liberals have been making strides in a difficult area. "It's very important that we understand how far we've come," Child and Youth Services Minister Deb Matthews maintains. "Ten years ago, there was no child in this province receiving IBI therapy funded by the government. Today, it's over 1,400 kids, just in the last two years alone ... Ten years ago, the budget for autism services was half a million dollars. Today it's in excess of $150 million."
She admits she hopes to have more programs in place in schools, but progress has been slow.
The response from parents? It's too little and far too late. And for taxpayers, it may be a case of pay now or pay a lot more later. "The estimated lifetime costs for a person who does not get IBI therapy runs well into 7 if not 8 digits," counters Bruce McIntosh of the Ontario Autism Coalition. "You can pay for these children to the tune of, you know ... $300,000 now, or you can pay a much, much larger price down the road."
Merella Fernandez will have more on this story on CityNews at Five and Six.
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York Region News
Parents protest province's treatment of their autistic children
Regional News
May 13, 2008
By: Michael Power, Staff Writer
Will starving yourself in front of Queen’s Park make the government step up resources for autistic children?
That’s what one man — and the York Region residents supporting him — are hoping.
About 30 supporters gathered in front of Queen’s Park this morning in a show of support for Stephan Marinoiu of Scarborough, who has gone without food for a week in front of the legislature, trying to force the government to increase support for families of autistic children.
Mr. Marinoiu, 49, whose 15-year-old son, Simon, is autistic, began the hunger strike to get the government to eliminate, by Nov. 1, the waiting list for children to get specialized treatment for autism, known as intensive behavioural intervention or IBI.
He wants the province to commit to providing the treatment in schools, as well as ask for financial and organizational help from the federal government.
York Region residents were among those at the demonstration offering support to Mr. Marinoiu.
“I’m sad he’s had to go to this extreme,” said Taline Sagharian of Richmond Hill, whose 11-year-old son, Christopher, has autism. “It’s an example of how desperate families can become.”
Still, Ms Sagharian could not say if Mr. Marinoiu’s efforts would force the province to honour his requests.
“I honestly don’t know,” she said. “I can tell you what I hope and that’s for the premier to step in and help.”
Ms Sagharian is also a plaintiff in a class action suit against the ministries of Education and Children and Youth Services and seven school boards across Ontario. The suit is pushing the province to provide or fund IBI in schools and without excessive delays.
Now, the province is only treating 11 per cent of children who would benefit from IBI, said Mr. Marinoiu, whose lips and ears were chapped from nine days of wind and sun.
A two-tier system had evolved in which parents with enough cash could pay privately for IBI treatment, while the majority of families struggled to come up with the money without going bankrupt.
“I’m out here because the government’s performance until now has been ridiculous,” Mr. Marinoiu said. “The money is in the system. It’s not rocket science, all they have to do is collaborate between ... ministries.”
Mr. Marinoiu said he planned to continue the hunger strike for a full year. He would continue until he was too weak, then his wife would take over. Their 15-year-old daughter also plans to participate.
“By that time, I’ll have recuperated and I’ll be right back in (the government’s) face.”
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Sarnia Observer
May 13, 2008
Families demand wait list removal
The father of an autistic teenager who has camped out at the Ontario legislature for more than a week is vowing not to eat until the province agrees to eliminate the backlog of children waiting for a crucial but costly therapy.
Stefan Marinoiu, 49, who has been drinking nothing but water for eight days, is trying to put pressure on the province to deliver the treatment more quickly to autistic kids, including his 15-year-old son Simon.
"He can hurt all of us when he has those violent tantrums which, of course, come out of his frustrations not being able to communicate with us," said Marinoiu, who had to quit his job a few years ago to help care for his son.
"It's a pretty bad situation. I'm getting weaker, I'm getting older, and I cannot hold on (to) him anymore."
Marinoiu will be joined by other parents Tuesday to put pressure on the province to eliminate by November the wait list of 1,148 eligible autistic children who are still waiting to receive intensive behavioural intervention therapy, or IBI.
The group will also be asking the government to provide IBI treatment in schools no later than September 2009, as well as obtain guidelines and financial assistance from Ottawa for autism services. But Education Minister Kathleen Wynne said she can't make those promises, although the province is working to make schools more accessible to autistic children.
"My heart goes out to people who have these very special and severe needs," she said.
"We will continue to work with the family to provide the resources in the school that this student needs."
Thousands of teachers and support workers are currently being trained to provide another kind of therapy, called applied behavioural analysis, in schools, Wynne added.
Some schools already have therapists to provide the more intensive IBI therapy, but not in regular classrooms because the one-on-one treatment works better in a separate space, she said.
The province has also boosted funding and almost tripled the number of children receiving IBI treatment to more than 1,400 as of March 31, said Children and Youth Services Minister Deb Matthews. The list of children waiting to be assessed to see if they are eligible to receive IBI has also dropped to 363 from 1,027 four years ago.
Marinoiu said he's been unable to obtain services to help care for his son, who was dropped from the wait list after he surpassed the cut-off age of six.
The Liberals eliminated that cut-off threshold in 2005, but say a dramatic increase in the number of children with autism has put additional pressure on the system, causing wait lists to grow.
The number of children waiting for IBI has jumped to 1,148 at the end of March from 89 in early 2004. Critics point to the rising numbers as proof the province isn't serious about giving autistic children the help they need.
Marinoiu's hunger strike is just one indication of the distress parents are feeling, said Conservative critic Elizabeth Witmer.
``It's another broken promise,'' she said. ``The premier promised one thing. It's simply not happening.''
Without help, Marinoiu said his family may be forced to put his son in an institution something he refuses to do.
``I don't have a life anymore and I've got nothing to lose,'' he said. ``So I'm going to stay here until the government is going to get it.''
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