Saturday, February 16, 2008
Sunday Night and Monday Special feb 17-18
There is going to be a story on CTV on Sunday, and on Monday in the Globe and Mail titled “Carly’s Story” – about a 13 year old girl with autism who was labeled low intellect and low potential. She now types her communications (apparently independently) and writes complex thoughts about what it’s like to have autism. There will be a longer item on CTV’s website on Monday about the same story www.ctv.ca Unfortunately I don’t know what time it will be on, although I will guess the evening news.
Friday, February 15, 2008
Autism INFORMATION February 15th 2008
Autism Information
February 15th, 2008
AFA (The Alliance for Families with Autism) prepares these news articles as a courtesy to your inbox and can be found archived at:
www.autismnewsarticles.blogspot.com
visit often
Send your articles to:
Ktchmeifucan2002@yahoo.ca
NOTE: AFA appreciates feedback on this mailout DIRECTLY to autismafa@yahoo.ca
To add a friend to our E-List, Email autismafa@yahoo.ca
When sending in special event information – please send it in Adobe/pdf or in an email as text so we can promptly post it. AFA thanks you for all of your articles, and special event postings!
FROM LISTMATE TAMMY STARR
Hi everyone,
I wanted to let you know that this coming Sunday night, Avis Favaro, the medical reporter, will be doing a story on Carly.
A longer version of the story will be available on the website at
www.ctv.ca:
On Monday morning, there will be an article in The Globe and Mail and it will probably be online at
www.globeandmail.com:
The reporter's name is Carly Weeks so if you put her name in the search box, the article should come up.
Thanks,
Tammy
P.S. I don’t know for sure, but I was talking to the ABC News medical reporter about Carly’s story..and perhaps…he will Pick up on it on Monday….but you never know.
Just keep your eye open Monday at 6.30.
-----------------------------------------------------------------------------------------------------------------------------------------------------------------
“PAY IT FORWARD”
SPECIAL SERVICES AT HOME - February 15, 2008
Special Services at Home (SSAH) overview
SSAH is a provincial program (Ontario), which serves families that have children with physical disabilities and/or developmental disabilities, and adults with developmental disabilities; who are living at home with their family, or living in the community (in housing that is not transfer payment, or ministry funded, residential type, group home placements).
SSAH ends at age 18 for children who have only been diagnosed with a physical disability, if your child also has a developmental disability , it is important to get that medical documentation to your Special Agreements Officer, so that eligibility past age 18 can be determined. The best type of medical documentation is a psychological assessment. These are expensive, but could possibly be done through the Board of Education, if the parent requests this.
The key to services after age 18, is a diagnosis of a developmental disability, not just a developmental delay. Disability is defined as a condition of sub average intelligence (IQ of 70 or less, or several adaptive living skill sets falling within or below the 1st percentile) occurring in the individual’s formative years (before age 18). If a child has only been diagnosed with a developmental delay and his or her IQ is over 70, there is a strong possibility they will not get SSAH after age 18. Children and Adults who are diagnosed with mental health issues, and/or behavioural and communication disorders, and/or ADHD/ADD, do not qualify for SSAH. Individuals who have a diagnosis of mild to moderate Autism, like “Aspergers” will not likely get SSAH after age 18, unless there is also a diagnosis of a developmental disability, as defined above.
SSAH is a program that adheres to “guidelines”, this means that it is not legislated and cannot be appealed through regular Ontario court/legal mechanisms. SSAH has two levels of appeal; the first is at the regional office level.
1). Another SAO in the same region will meet with the family, or conduct a telephone interview (the family’s choice) and discuss their reasons for the SSAH appeal. The family will need to show why they think the decision was unfair and how it did not follow the SSAH guidelines. The SAO (at the first level of appeal) is not looking at whether the amount of funding is correct, but seeing if the SAO that made the original decision, followed all of the SSAH guidelines, took all the family’s information on the application into account, and that any new changes in circumstances were considered, when the original funding decision was made. If anything was missed in the decision making process, the original SAO may be asked to re-examine their funding decision, and it is up to the family’s original SAO to determine any change in the funding levels based on this new information (some appeals that are won by the family, do not automatically get an increase in their funding level). This can happen for several reasons; the region has a waiting list and therefore does not have any money to give to the family. The SAO inputs the change in circumstances into the ‘provincial decision making tool’ and the funding level does not show an increase (for instance the changes are about the child’s behaviour and in the decision making tool the child is already receiving the maximum score allowed for behavioural problems). Each area of the provincial decision making tool has minimum and maximum scores for each section found on the SSAH application and once a maximum score in one area is reached it cannot be increased past that score.
2). The second level of appeal is at the Assistant Deputy Ministers ( ADM ) level and that appeal is assigned to another SAO in the province of Ontario, who will go through the same process as the 1st level appeal did. The ADM ’s decision is considered final.
SSAH can be used for:
1:1 worker/mediator to work with the disabled person in the home, out in the community, or at recreational programs such as summer camps. Can also be used for overnight special needs summer camp fees for several weeks in the summer. Babysitting for other siblings so that the parent can work 1:1 with the disabled child or adult. House cleaning, grass cutting, and snow removal. (Grass cutting is not lawn care services like fertilizing and laying sod) .Transportation to and from day programs can also be covered. Receipts are required with the SSAH invoices for services and programs that issue receipts. The service cannot be invoiced through SSAH until it is finished.
SSAH cannot be used for:
1:1 supports at school (the Board of Education is responsible for this), 1:1 support at daycare (the daycare can access a special fund if 1:1 support is required), for professional programs like IBI /ABA, massage therapy, speech and language therapy, chiropractor services, naturopathic services, medical reports or assessments, transportation for any other reason than to and from day programs, regular items that are required by any child, like food, clothing, city recreational or program fees, housing, and medication (to name just a few).
If SSAH is approved for less than what was requested, it is because the provincial decision making ‘tool’ score was for a lower funding level than what the family requested. If the family requests less than the decision making tool score, the family will receive what they have requested. It is better to request a bit more than what is needed to ensure you receive the maximum amount for your circumstances. However, greatly exaggerated requests (for example of more than $10,000.00 per year, where nursing services are not required) will most likely not be considered at that level. The SAO can only approve authorizations of up to $10,000.00, higher amounts will be sent to the Regional Director for approval. That does not mean that every family should request $10,000.00, as that is not appropriate. The family should decide how many hours per week of services they need, how much per hour they are going to pay, any other costs like residential summer camp fees, transportation to day programs, or housecleaning costs, and put that total amount in their SSAH request. The items approved for SSAH reimbursement, can differ from region to region, so, please make sure the item is approved before sending in your invoice, (if it is not on the list above). That way you will not be disappointed if your invoice is returned to you and refused payment. Items that are not paid or denied reimbursement through SSAH are not appealable. Each regional office can set priorities for their area and decide what extra items they will and will not cover on SSAH, depending on these priorities.
This information is provided by an anonymous source.
Send all suggestions and information to autismafa@yahoo.ca
and remember to write PAY IT FORWARD
on the subject line of your email.
Please indicate, as the author of the information,
if you wish to remain anonymous
THE ALLIANCE FOR FAMILIES WITH AUTISM (AFA)
Please contact us at autismafa@yahoo.ca
Please forward articles & information to ktchmeifucan2002@yahoo.ca
Check out the news article BLOG sent out with each mailing.
http://autismnewsarticles.blogspot.com
February 15th, 2008
AFA (The Alliance for Families with Autism) prepares these news articles as a courtesy to your inbox and can be found archived at:
www.autismnewsarticles.blogspot.com
visit often
Send your articles to:
Ktchmeifucan2002@yahoo.ca
NOTE: AFA appreciates feedback on this mailout DIRECTLY to autismafa@yahoo.ca
To add a friend to our E-List, Email autismafa@yahoo.ca
When sending in special event information – please send it in Adobe/pdf or in an email as text so we can promptly post it. AFA thanks you for all of your articles, and special event postings!
FROM LISTMATE TAMMY STARR
Hi everyone,
I wanted to let you know that this coming Sunday night, Avis Favaro, the medical reporter, will be doing a story on Carly.
A longer version of the story will be available on the website at
www.ctv.ca:
On Monday morning, there will be an article in The Globe and Mail and it will probably be online at
www.globeandmail.com:
The reporter's name is Carly Weeks so if you put her name in the search box, the article should come up.
Thanks,
Tammy
P.S. I don’t know for sure, but I was talking to the ABC News medical reporter about Carly’s story..and perhaps…he will Pick up on it on Monday….but you never know.
Just keep your eye open Monday at 6.30.
-----------------------------------------------------------------------------------------------------------------------------------------------------------------
“PAY IT FORWARD”
SPECIAL SERVICES AT HOME - February 15, 2008
Special Services at Home (SSAH) overview
SSAH is a provincial program (Ontario), which serves families that have children with physical disabilities and/or developmental disabilities, and adults with developmental disabilities; who are living at home with their family, or living in the community (in housing that is not transfer payment, or ministry funded, residential type, group home placements).
SSAH ends at age 18 for children who have only been diagnosed with a physical disability, if your child also has a developmental disability , it is important to get that medical documentation to your Special Agreements Officer, so that eligibility past age 18 can be determined. The best type of medical documentation is a psychological assessment. These are expensive, but could possibly be done through the Board of Education, if the parent requests this.
The key to services after age 18, is a diagnosis of a developmental disability, not just a developmental delay. Disability is defined as a condition of sub average intelligence (IQ of 70 or less, or several adaptive living skill sets falling within or below the 1st percentile) occurring in the individual’s formative years (before age 18). If a child has only been diagnosed with a developmental delay and his or her IQ is over 70, there is a strong possibility they will not get SSAH after age 18. Children and Adults who are diagnosed with mental health issues, and/or behavioural and communication disorders, and/or ADHD/ADD, do not qualify for SSAH. Individuals who have a diagnosis of mild to moderate Autism, like “Aspergers” will not likely get SSAH after age 18, unless there is also a diagnosis of a developmental disability, as defined above.
SSAH is a program that adheres to “guidelines”, this means that it is not legislated and cannot be appealed through regular Ontario court/legal mechanisms. SSAH has two levels of appeal; the first is at the regional office level.
1). Another SAO in the same region will meet with the family, or conduct a telephone interview (the family’s choice) and discuss their reasons for the SSAH appeal. The family will need to show why they think the decision was unfair and how it did not follow the SSAH guidelines. The SAO (at the first level of appeal) is not looking at whether the amount of funding is correct, but seeing if the SAO that made the original decision, followed all of the SSAH guidelines, took all the family’s information on the application into account, and that any new changes in circumstances were considered, when the original funding decision was made. If anything was missed in the decision making process, the original SAO may be asked to re-examine their funding decision, and it is up to the family’s original SAO to determine any change in the funding levels based on this new information (some appeals that are won by the family, do not automatically get an increase in their funding level). This can happen for several reasons; the region has a waiting list and therefore does not have any money to give to the family. The SAO inputs the change in circumstances into the ‘provincial decision making tool’ and the funding level does not show an increase (for instance the changes are about the child’s behaviour and in the decision making tool the child is already receiving the maximum score allowed for behavioural problems). Each area of the provincial decision making tool has minimum and maximum scores for each section found on the SSAH application and once a maximum score in one area is reached it cannot be increased past that score.
2). The second level of appeal is at the Assistant Deputy Ministers ( ADM ) level and that appeal is assigned to another SAO in the province of Ontario, who will go through the same process as the 1st level appeal did. The ADM ’s decision is considered final.
SSAH can be used for:
1:1 worker/mediator to work with the disabled person in the home, out in the community, or at recreational programs such as summer camps. Can also be used for overnight special needs summer camp fees for several weeks in the summer. Babysitting for other siblings so that the parent can work 1:1 with the disabled child or adult. House cleaning, grass cutting, and snow removal. (Grass cutting is not lawn care services like fertilizing and laying sod) .Transportation to and from day programs can also be covered. Receipts are required with the SSAH invoices for services and programs that issue receipts. The service cannot be invoiced through SSAH until it is finished.
SSAH cannot be used for:
1:1 supports at school (the Board of Education is responsible for this), 1:1 support at daycare (the daycare can access a special fund if 1:1 support is required), for professional programs like IBI /ABA, massage therapy, speech and language therapy, chiropractor services, naturopathic services, medical reports or assessments, transportation for any other reason than to and from day programs, regular items that are required by any child, like food, clothing, city recreational or program fees, housing, and medication (to name just a few).
If SSAH is approved for less than what was requested, it is because the provincial decision making ‘tool’ score was for a lower funding level than what the family requested. If the family requests less than the decision making tool score, the family will receive what they have requested. It is better to request a bit more than what is needed to ensure you receive the maximum amount for your circumstances. However, greatly exaggerated requests (for example of more than $10,000.00 per year, where nursing services are not required) will most likely not be considered at that level. The SAO can only approve authorizations of up to $10,000.00, higher amounts will be sent to the Regional Director for approval. That does not mean that every family should request $10,000.00, as that is not appropriate. The family should decide how many hours per week of services they need, how much per hour they are going to pay, any other costs like residential summer camp fees, transportation to day programs, or housecleaning costs, and put that total amount in their SSAH request. The items approved for SSAH reimbursement, can differ from region to region, so, please make sure the item is approved before sending in your invoice, (if it is not on the list above). That way you will not be disappointed if your invoice is returned to you and refused payment. Items that are not paid or denied reimbursement through SSAH are not appealable. Each regional office can set priorities for their area and decide what extra items they will and will not cover on SSAH, depending on these priorities.
This information is provided by an anonymous source.
Send all suggestions and information to autismafa@yahoo.ca
and remember to write PAY IT FORWARD
on the subject line of your email.
Please indicate, as the author of the information,
if you wish to remain anonymous
THE ALLIANCE FOR FAMILIES WITH AUTISM (AFA)
Please contact us at autismafa@yahoo.ca
Please forward articles & information to ktchmeifucan2002@yahoo.ca
Check out the news article BLOG sent out with each mailing.
http://autismnewsarticles.blogspot.com
Autism News Articles Feb 9-12th 2008
Autism News Articles
February 9th, 2008-February 12th 2008
AFA (The Alliance for Families with Autism) prepares these news articles as a courtesy to your inbox and can be found archived at: (AS MENTIONED EARLIER- MAILINGS FOR MARCH WILL OCCUR VIA THE BLOG ONLY)
www.autismnewsarticles.blogspot.com
visit often
Send your articles to:
Ktchmeifucan2002@yahoo.ca
NOTE: AFA appreciates ALL feedback on this mailout DIRECTLY to autismafa@yahoo.ca
To add a friend to our E-List, Email autismafa@yahoo.ca
When sending in special event information – please send it in Adobe/pdf or in an email as text so we can promptly post it. AFA thanks you for all of your articles, and special event postings!
AFA executive Pat Lalonde, with other members, along with other community supports, agency supports, fellow advocates, fellow advocate groups, OAC, Senator Munson, friends and generally great people in our great country have banded together to make Mr. Stefan Marinoiu’s Journey unforgettable, for this AFA sends many thanks. Follow the stories below:
----- Original Message -----
From: 'S MARINOIU'
To: info@autismcanada.org
Sent: Wed Feb 6 17:02
Subject: Fwd: Stefan Marinoiu
Hello,
Today (February 6 2008), a representative by the name of Laurie Mawlam
contacted my mother inquiring about my father, Stefan Marinoiu.
As we speak, my father, Stefan Marinoiu, is walking to Ottawa in order to
raise awareness about Autism and its underfunded programs.
He left our house Thursday January 31st without telling my mother or myself
anything. He talked of doing a walk for Autism, but despite my mothers
suggestions to plan an organized, well thought out trek, he left on his own
impulse.
On February 2nd (If my memory suits me well) He called our house to let us
know that he was in Newtonville Ontario due to the fact that a kind stranger
picked him up in order to let him have some rest.
He is currently walking on Highway 2 East Towards Ottawa, a kind stranger
from Trenton Ontario called our house yesterday (February 5 2008) to let us
know that he had stopped there, but he is still continuing his walk.
---
Laurie contacted my mother to see if there was a way to reach my father, but
we haven't heard from him since Sunday Feb 3.
I have created a facebook page to promote my father's journey and to try and
find out from people around Ontario where he is now, and how far he has made
it in his trek.
Laurie let my mother know that Senator Munson wanted to meet my father upon
his arrival in Ottawa.
The link for the Facebook group is:
http://hs.facebook.com/group.php\?gid=8363327485
I am currently trying to contact media in order to promote his story so that
he doesn't "walk for nothing".
I am hoping this information may be of some help for Laurie to contact him.
Thank you for your time,
Lia M
Autism activist treks through Napanee
Posted By Micah Luxen
Posted 5 days ago
With a bright pink sign for autism, one man, Stefan Marinoiu, walks alone down the highway, making his way from Toronto to Ottawa in the cold.
He’s already walked six days at three kilometres an hour with an injured foot, but Marinoiu is going all the way to Ottawa for his 15-year-old, who has autism. The determined father says autistic children need much more support from the government.
“[The government] is telling me they have no resources for us but as autistic children get older, life gets more difficult, so we need more help, and I’m going to the federal government to ask them for it,” said Marinoiu, as he walked though Napanee on Wednesday afternoon.
He went on to say that the United States government offers families with autistic children substantial support, something he hopes the Canadian government will adopt.
“I’m trying to do something for all those children in Canada who have autism, because they deserve the same happiness as the other children,” said Marinoiu of the illness that affects brain development in one in 1,000 children.
It’s been a hard walk for Marinoiu who’s kept on course, even during two blizzards.
“The snowstorm was really bad, but I kept walking, with the exception of a 10 minute drive by the OPP who said, ‘wow, you’re going to freeze to death.’
“And I’m very slow because I never did this before.”
The OPP picked up the walker on the 401, where it is illegal to walk – he’s now using Highway 2.
Marinoiu hoped to reach Kingston by Wednesday nightfall.
“I’m not a protester--I’m going to Ottawa in friendliness. I just want to find a solution for autism.”
The WHIG Standard
What makes a hero?; We're too quick to bestow the title on everyone. A hero is someone who's exceptional
Posted By Gerald Walton Paul
Posted 10 days ago
Recently, at a Sunday service at the Unitarian Fellowship, Rev. Kathy Sage had"Everyday Heroes and Heroines" as her sermon subject.
She put forward a good case for believing that all of us have the ability to perform super actions. To illustrate, she chose a drawing by a little girl as a first-rate example of heroic action. The little girl had painted a child's heart with numerous tiny hearts going out to the world. In a planet ravaged by hate and violence, this tiny hero showered the world with hearts of love.
While this girl's depiction of loving hearts moves me emotionally, I don't think she should be seen as a hero.
Ms. Sage is right in referring to the little girl, not as a "hero," but as an "everyday hero." A genuine hero is one who puts herself in harm's way for others and does it in a way that is far beyond the call of duty.
I think of the caregivers gathered for a coffee break to share their stories about looking after their spouse or another loved one through years of dealing with Alzheimer's disease. Every one of them is an everyday hero.
I summon up images of my mother during the Depression days, seeing that her eight children had enough to eat while she survived on meager leftovers. We should consider parents of children with autism, a peanut allergy, asthma and cancer everyday heroes. They give up their energy and time in the interest of the little ones.
Growing up with close ties to church and Sunday school, I looked up to those who I considered biblical heroes: Jonah the whale rider, Paul the shipwreck survivor, Eve the daring picker of forbidden fruit, Ruth the caregiver, Jesus the teacher of love.
Today, rather than using "hero" in a loose way, it's preferable to call these biblical figures "everyday heroes."
When we were kids, we used to play hero and villain. The villain would insist that the fair maiden pay the rent or else be evicted. The maiden would cry "I can't pay the rent." The villain would repeat his ultimatum. The maiden would echo her initial response. When the hero arrived and offered to pay the rent, the maiden, clasping her hands in adoration, would acclaim him as "my hero." Today, I see the so-called hero of this little drama as a generous fellow, not as a hero.
A hero may be described as one who displays extraordinary courage in the face of extraordinary danger. Whether male or female, heroes do the unexpected, undemanded. They often disobey orders by going beyond what doing one's duty requires. For their heroic actions, they are awarded by being honoured for their achievements and admired for their noble qualities.
When dead military personnel are repatriated, they receive a "hero's welcome." On arrival home, the overpass near Trenton is decked with crowds of people waving flags and banners signifying the great esteem in which these volunteers are held.
Lisa Prasuhn from AFA gets the message out :
Thanks for your message of support for Mr. Marinoiu, we are pleased
that you want to help out. The AFA was made aware of Mr. Marinoiu's journey earlier this week and we began networking with several agencies, groups, police, and media. Our member in Kingston, Pat LaLonde has arranged media coverage in her area. Strangers have picked this man up along the way, offering hot meals and a place to sleep. It is all happening so fast for everyone, it is hard to keep up. Pat has been in touch with the OPP and they have a good watch on him as they follow his movement. Senator Jim Munson has prepared a media release and will be waiting for him in Ottawa. The autism community
is so taken by this man, who left his home and went for a "walk" all on
his own, for his family, for his son, for all of us, so if you want to say a personal note, or you would be willing to assist with contacting media in Ottawa, please contact: marinoiu_lia@sympatico.ca
Thanks , Lisa Prasuhn
lisa.prasuhn@sympatico.ca
SEE ATTACHED PRESS RELEASE
And the facebook link
http://www.facebook.com/group.php/editgroup.php?members&gid=8363327485
Man walks to Ottawa
UPDATE from Pat LaLonde
Just got an update. Mr. Marinoiu left Elgin this morning, and is nearing his destination for this evening, Smith Falls . He was interviewed by the Smith Falls this Week!!!!!!
I want to send out a huge THANK YOU to the local media!!! You have done an amazing job letting the public know about Stefan's Walk. Mr. Marinoiu's family is very grateful for all of your support. What an incredible individual Stefan is to be walking from Toronto to Ottawa to raise awareness for Autism. As a parent, I can certainly understand his frustration!!!!!!
Thank you to the Marinoiu family and in particular Stefan Marinoiu for enduring the cold, wind, snow and rain to help some of the most vulnerable individuals in our society.
Mr. Marinoiu's daughter Lia has started a Facebook Group for her father's walk. I believe the groups title is My Father is Walking to Ottawa for Autism. There were approx. 400 members yesterday and it is nearing 800 today!!!! Well done Lia....... Here's wishing your dad a safe journey!!!!!!
Cheers,
Pat La Londe
Father makes trek to shed light on autism
http://www.intelligencer.ca/ArticleDisplay.aspx?e=889682
Posted By Sean Tomlinson
Posted 2 days ago
You can't really blame Stefan Marinoiu for wanting a shortcut to Ottawa , especially since he is walking there from Toronto .
When the Ontario Provincial Police picked him up near Oshawa he found out Highway 401 was the wrong choice.
"It's illegal to walk on the 401. I didn't know that," he said. "I thought it would be a better, straight, shorter way."
Marinoiu, 49, is making the 452-kilometre walk from Toronto to Ottawa to raise public awareness of autism.
His passion for autism is evident when he speaks and the sandwich board sign he wears which reads 'autism: time for a national solution' only reinforces that.
Marinoiu has a 15-year-old son who was diagnosed with autism when he was a child.
Marinoiu and his wife have struggled to provide proper support while their son's condition has deteriorated with age. He has now become aggressive, a common symptom in autistic children, and Marinoiu is afraid the Children's Aid Society may take him away, fearing he could hurt their younger six-year-old child.
"His autism has progressed to the point that communication is a struggle," Marinoiu said. "We just do not have the money to provide proper care for him."
Once in Ottawa , Marinoiu plans on going straight to Parliament Hill to speak with the federal government about increasing funding to support families like his who are dealing with autism. He also wants to urge the government to fund more research into autism.
"There are three types of governments: Governments that make things happen, governments that see things happen and the kind that asks what happened," he said. "We need to be the government that makes things happen."
Marinoiu, who has a plate in his left foot after breaking it two years ago, began his walk last Thursday morning from his home in Toronto . By Monday night he had walked the 171 kilometres to Trenton .
http://www.napaneeguide.com/ArticleDisplay.aspx?e=892780
Autism activist treks through Napanee
Posted By Micah Luxen
Posted 1 day ago
With a bright pink sign for autism, one man, Stefan Marinoiu, walks alone down the highway, making his way from Toronto to Ottawa in the cold.
He’s already walked six days at three kilometres an hour with an injured foot, but Marinoiu is going all the way to Ottawa for his 15-year-old, who has autism. The determined father says autistic children need much more support from the government.
“[The government] is telling me they have no resources for us but as autistic children get older, life gets more difficult, so we need more help, and I’m going to the federal government to ask them for it,” said Marinoiu, as he walked though Napanee on Wednesday afternoon.
He went on to say that the United States government offers families with autistic children substantial support, something he hopes the Canadian government will adopt.
“I’m trying to do something for all those children in Canada who have autism, because they deserve the same happiness as the other children,” said Marinoiu of the illness that affects brain development in one in 1,000 children.
It’s been a hard walk for Marinoiu who’s kept on course, even during two blizzards.
“The snowstorm was really bad, but I kept walking, with the exception of a 10 minute drive by the OPP who said, ‘wow, you’re going to freeze to death.’
“And I’m very slow because I never did this before.”
The OPP picked up the walker on the 401, where it is illegal to walk – he’s now using Highway 2.
Marinoiu hoped to reach Kingston by Wednesday nightfall.
“I’m not a protester--I’m going to Ottawa in friendliness. I just want to find a solution for autism.”
The Ottawa Citizen
Blizzards no match for man on 450K walk for autism
Jordana Huber
Canwest News Service
Sunday, February 10, 2008
TORONTO - The metal plate in his left foot is bothering him, and the blizzards Stefan Marinoiu has walked through have left him with frozen fingertips. But as he makes his way toward Ottawa to raise awareness about autism, the 49-year-old said the only thing on his mind is his 15-year-old son.
Unplanned, and out of exasperation, Marinoiu left his Toronto home Jan. 31 embarking on a 450 kilometre walk to "plead with the politicians" that it is time for a national autism strategy.
"Having an autistic child is like having a present and not being able to unwrap it," Marinoiu said. "I have been silent for 15 years. All the stress, all the pain, no resources, I said I gotta do something and I just walked out the door."
His pace has slowed since he left without telling his wife where he was going, and at times, he said blinding snow has left him unable to see the road.
The Ontario Provincial Police, who stopped him the first night for walking illegally on the highway, have kept an eye out for him, picking him up several times and driving him into the nearest community.
"They told me I was gonna freeze to death," he said. "It has been so cold you feel like you are going to die the next second but I take the next step. I am walking for all the tens of thousands who are like my son. No matter what, I am going to accomplish this."
Though he can't point to one event that triggered his march, he said his son Simon's needs have grown increasingly difficult to meet. Simon waited on a list for Applied Behaviour Analysis, an intensive treatment for autistic children but turned seven, the cut-off age, before reaching the top of the list, Marinoiu said.
"My son, he can't speak but I know he feels so much," Marinoiu said. " He needs help to be able to function and communicate. We have all the love to give him but we need more resources."
Without money or a cell phone, the part-time delivery man has relied on benevolent strangers for help along his trek. One night he slept in a homeless shelter, another in a church.
Locals have anonymously paid for hotel rooms while others have stopped along the highway to bring him food. His daughter's Facebook group, started after he called home from a borrowed phone, now has more than 1,400 members.
Marinoiu hoped to be in Ottawa Monday where Senator Jim Munson said he would be there to welcome him. Others from Ottawa with autistic children have also been organizing online to greet Marinoiu when he arrives.
© Canwest News Service 2008
Eileen Mountain, gets the word out :
I am not certain if any of you can help to spread the word about the desperate families who have someone in their family with a diagnosis of Autism but I have copied below, information from emails regarding a desperate father whose son has Autism and is walking to Ottawa , from Toronto, to gain attention for the diagnosis of Autism. Unless one is directly involved one could not fathom it's toll on society/ family / financially , and emotionally. 1 in 150 children are diagnosed with the disorder. Personally my family is affected . I am the grandmother of one child with the diagnosis.
Please forward this email to anyone who might be able to support bringing more support for those with Autism and its care for the family and their children.
Sincerely, and kind regards Eileen Mountain
AN UPDATE
I wanted to keep you updated. Below please find a portion of an email that I received from Lia, Stefan's Daughter. I am hopeful that Stefan receives the support that he so rightfully deserves and that the media and MP's will be in attendance when he arrives.
As for route, this is what we have decided.
My father is really exhausted, so we will be starting our route at 8:00 AM
from the Ottawa river Parkway and Carling Ave.
- We will then walk along the Ottawa River Parkway all the Way to Parliament
Hill (it becomes Wellington Avenue)
We estimate my father will arrive between 11:00 to 11:30 AM (hopefully
11:00) TODAY!!!!!
Lia
Stefan was in Smith Falls Friday night, Carleton Place Saturday night and then Kanata Sunday night. His knee is really bothering him, causing him a lot of pain. He broke his leg in 2005 and has a metal plate in it!!!!!! Which makes his walk/journey all that more incredible!!!!! What an amazing individual Stefan truly is!!!!!!!!!!!!
Cheers,
Pat
Reprinted with permission
Dear Lia,
I received a copy of your email below from my colleague Laurie Mawlam of the Autism Foundation about your father who is walking to Ottawa to raise awareness of the need for federal leadership in creating a National Autism Strategy. I understand that he has now arrived in Kingston and continues to make his way through the snow storm.
My name is Andrew Kavchak. I live in Ottawa and I am a parent of a child with autism. I would like to commend your father for his "walking to Ottawa" initiative and to thank him for his efforts to raise awareness of the need for the federal government to recognize the enormity of the needs and suffering of the autism community and the utter inadequacy of what the provinces are doing.
For your information, my son was diagnosed in December 2003 and beginning in 2004 I began to protest on Parliament Hill everyday during my lunch hour for a National Autism Strategy. I continued to protest throughout 2005 and stopped in April 2006 because of sheer exhaustion. Attached is a photo that was taken in the Spring of 2004. I organized and participated in several autism rallies on Parliament Hill and in front of Premier McGuinty's constituency office. I drafted a petition that was tabled in the House of Commons 89 times (the petition can be obtained from the home page of Families for Early Autism Treatment of BC - scroll down at: www.featbc.org) and met many politicians and journalists who were interested in the cause. We held several press conferences.
Whereas the word "autism" was never uttered on Parliament Hill in the past, the activity in recent years has heated up and a momentum has built up. Your father is contributing to it greatly already. Politicians like Peter Stoffer, Andy Scott, and Shawn Murphy have tabled Private Members' Bills and Motions in the House of Commons. While the Bills were defeated, the Motion of Andy Scott to create a National Autism Strategy was passed in December 2006. Regrettably, the government has done NOTHING to put it in place. However, one of our champions on the Hill, Senator Jim Munson, was successful in getting the Standing Senate Committee on Social Affairs to launch and inquiry into "funding for the treatment of autism". They held hearings and tabled a report with recommendations to the government, in March 2007. The government's response to the report was tabled in September 2007 and it largely ignored the problem. However, on the eve of a rally (November 21, 2006) that I organized with colleagues from FEAT of BC, to mark the second anniversary of the Supreme Court of Canada decision in the Auton case, the Health Minister Clement suddenly held a press conference and announced a new 5-point autism initiative. This was the first time the Minister had actually acknowledged a problem. Regrettably, his proposed action plan was truly disappointing (e.g. the creation of an information "website" and holding a "by-invitation only symposium").
It is clear that we need to get the momentum and ball rolling on the autism file. Your father is doing a lot to help. Senator Munson and Peter Stoffer, MP, have indicated a willingness to meet with you. These are our allies. Please contact them and try to speak with them about what can be done upon your father's arrival to help make it a success. Please issue a press release to the media about your father's coming to Ottawa and the purpose of his desperate walk. Please hold a press conference and rally on the Hill to try to get national media coverage. It needs to be done.
May God bless you and your family.
Andrew Kavchak
Senator Munson: (613) 947-2504; monsoj@sen.parl.gc.ca
Peter Stoffer MP: (613) 995-5822; stoffer.p@parl.gc.ca
PS - I also wish to share with you this comment from a fellow parent:
"What is it about this country that drives normal people to do abnormal and desperate things ... that can even endanger their health! Is walking hundred of miles across freezing, Winter terrain what it necessarily takes in Canada to get the attention of government? How awful ... just awful!
This father is quite courageous, obviously. But what is it that drives a dad to do something like this, in Canada? It's a terrible indictment of this nation's polity; in my view, and an ignoble symbol of our national shame!
Systemic autism policy neglect now leads us to this surreal spectacle of paternal desperation: a father marching hundreds of miles across a frozen, windswept landscape in Ontario, on his way to Ottawa to plead for medically necessary healthcare for his child. And this is actually happening in Canada!
What a miserable picture.
This very wealthy nation has degraded into a very bad place. It's no longer the Canada of our forefathers: unaccountable health policy technocrats are now firmly at the helm. "
United press international
Canadian braves blizzard for autism walk
Published: Feb. 10, 2008 at 11:03 PM
OTTAWA, Feb. 10 (UPI) -- A Canadian man is walking nearly 300 miles from Toronto to Ottawa in some of the winter's worst weather to draw attention to the need to help those with autism.
Stefan Marinoiu, 49, told Canwest News Service he left his home to begin the 281-mile trek Jan. 31 to "plead with the politicians" to do more for those with the affliction. Marinoiu, who has a 15-year-old son with autism, embarked without even telling his wife his plan and has battled blinding snows and frostbite.
"Having an autistic child is like having a present and not being able to unwrap it," Marinoiu said. "I have been silent for 15 years. All the stress, all the pain, no resources, I said I gotta do something and I just walked out the door."
Ontario Provincial Police stopped him the first night for walking illegally on the highway. Since then they've been keeping an eye out for him and sometimes advance him to the nearest town.
"They told me I was gonna freeze to death," he said. "It has been so cold you feel like you are going to die the next second but I take the next step. I am walking for all the tens of thousands who are like my son. No matter what, I am going to accomplish this."
He hopes to arrive in Ottawa Monday.
© United Press International. All Rights Reserved.
This material may not be reproduced, redistributed, or manipulated in any form.
***************
From a Listmate
Hi Folks,
Here's a report from the Hill: Just before 11am Stefan Marinoiu
arrived on the Hill with his daughter Lia (who took the train from
Toronto to catch up with him) and was met by Senator Jim Munson, and a
group of parents and media. Today must be the coldest day of the
winter so far in Ottawa. With the wind it feels like -35C or something
like it, and Mr. Marinoiu was shivering like a leaf as frost built up
on his moustache. He gave interviews to the media, as did the
supporting cast of parents who showed up. I spoke with the Ottawa Sun
reporter, and gave short interviews to the "A Channel" and CTV/CJOH
television reporters.
Mr. Marinoiu, his daughter and Senator Munson then left for a meeting
with Health Minister Tony Clement. Although there was a press scrum
and conference on the steps in front of Centre Block on his arrival,
there may be another press conference this afternoon. Well, I suspect
he was glad to finally get indoors.
Good luck Stefan!
Le Droit, 11 février 2008
Un père marche de Toronto à Ottawa pour son fils autiste
Dubé, Charles
Un Torontois qui a décidé de marcher jusqu'à Ottawa pour dénoncer le
peu de soutien qu'il reçoit des gouvernements pour s'occuper, avec sa
femme, de leur fils autiste de 15 ans, est arrivé à Kanata hier et
devrait se rendre au Parlement aujourd'hui.
Exaspéré, sans aucune préparation, Stefan Marinoiu a quitté Toronto
le 31 janvier sans avertir sa famille dans le but de sensibiliser la
population et les gouvernements à la situation de nombreuses familles qui
élèvent des enfants autistes.
Il a d'abord emprunté la 401 mais, le premier soir, quand la Police
provinciale de l'Ontario l'a averti qu'il n'avait pas le droit de
marcher sur cette autoroute, il s'est rabattu sur la 2, raconte sa fille Lia
dans un groupe Facebook qu'elle a créé pour appuyer son père et qui
comptait plus de 1600 membres hier. "Quand j'ai appris qu'il était parti,
je voulais qu'il arrête pour sa santé et sa sécurité mais, maintenant,
je suis fière de lui et je souhaite que sa marche serve à quelque
chose", a déclaré au Droit Lia Marinoiu, qui s'était rendue à Kanata pour
surprendre son père.
Elle et d'autres marcheurs l'accompagneront jusqu'au Parlement. Ils
devraient arriver vers 11 h. Le sénateur Jim Munson a promis
d'accueillir M. Marinoiu.
L'homme de 49 ans, qui marche malgré une blessure à la jambe, a
contacté sa famille pour la première fois le 2 février quand un étranger
lui a offert un endroit pour se reposer. Plus tard, d'autres bons
samaritains lui ont offert le gîte et le couvert
cdube@ledroit.com
February 11, 2008 THE LEADER-POST (REGINA) (FINAL) PAGE: A4 (NEWS)
Pleading with the politicians
Jordana Huber, Canwest News Service
TORONTO -- The metal plate in his left foot is bothering him, and the blizzards Stefan Marinoiu has walked through have left him with frozen fingertips.
But as he makes his way toward Ottawa to raise awareness about autism, the 49-year-old said the only thing on his mind is his 15-year-old son.
Unplanned, and out of exasperation, Marinoiu left his Toronto home Jan. 31 embarking on a 450-kilometre walk to "plead with the politicians" that it is time for a national autism strategy.
"Having an autistic child is like having a present and not being able to unwrap it," Marinoiu said.
"I have been silent for 15 years. All the stress, all the pain, no resources, I said I gotta do something and I just walked out the door."
His pace has slowed since he left without telling his wife where he was going, and at times, he said blinding snow has left him unable to see the road.
The Ontario Provincial Police, who stopped him the first night for walking illegally on the highway, have kept an eye out for him, picking him up several times and driving him into the nearest community.
"They told me I was gonna freeze to death," he said. "It has been so cold you feel like you are going to die the next second but I take the next step. I am walking for all the tens of thousands who are like my son. No matter what, I am going to accomplish this."
Though he can't point to one event that triggered his march, he said his son Simon's needs have grown increasingly difficult to meet.
Simon waited on a list for Applied Behaviour Analysis, an intensive treatment for autistic children but turned seven, the cut-off age, before reaching the top of the list, Marinoiu said.
"My son, he can't speak but I know he feels so much," Marinoiu said. " He needs help to be able to function and communicate. We have all the love to give him but we need more resources."
Without money or a cell phone, the part-time delivery man has relied on benevolent strangers for help along his trek. One night he slept in a homeless shelter, another in a church.
Locals have anonymously paid for hotel rooms while others have stopped along the highway to bring him food.
His daughter's Facebook group, started after he called home from a borrowed phone, now has more than 1,400 members.
Marinoiu hoped to be in Ottawa Monday where Senator Jim Munson said he would be there to welcome him.
Others from Ottawa with autistic children have also been organizing online to greet Marinoiu when he arrives.
February 11, 2008 THE WINDSOR STAR (FINAL) PAGE: B8 (NEWS)
Snow can't halt walk for autism
Canwest
The metal plate in his left foot is bothering him, and the blizzards Stefan Marinoiu has walked through have left him with frozen fingertips. But as he makes his way toward Ottawa to raise awareness about autism, the 49-year-old said the only thing on his mind is his 15-year-old son.
Unplanned, and out of exasperation, Marinoiu left his Toronto home Jan. 31 embarking on a 450 kilometre walk to "plead with the politicians" that it is time for a national autism strategy.
"Having an autistic child is like having a present and not being able to unwrap it," Marinoiu said. "I have been silent for 15 years. All the stress, all the pain, no resources, I said I gotta do something and I just walked out the door."
ILLUS: Colour Photo: Handout photo / LONG TREK: Stefan Marinoiu, father of a 15-year-old autistic son, pauses near Kingston last week on his way to Ottawa. ;
February 11, 2008 MONTREAL GAZETTE (FINAL) PAGE: A3 (NEWS)
Activist treks for autism
450 kilometres. Driven to help son, raise awareness
JORDANA HUBER, Canwest News Service
The metal plate in his left foot is bothering him, and the blizzards Stefan Marinoiu has walked through have left him with frozen fingertips. But as he makes his way toward Ottawa to raise awareness about autism, the 49-year-old said the only thing on his mind is his 15-year-old son.
Exasperated and with no plan, Marinoiu left his Toronto home Jan. 31, embarking on a 450-kilometre walk to "plead with the politicians" that it is time for a national autism strategy.
"Having an autistic child is like having a present and not being able to unwrap it," Marinoiu said. "I have been silent for 15 years. All the stress, all the pain, no resources, I said, 'I gotta do something,' and I just walked out the door."
His pace has slowed since he left without telling his wife where he was going. At times, he said, blinding snow has left him unable to see the road.
The Ontario Provincial Police, who stopped him the first night for walking illegally on the highway, have kept an eye out for him, picking him up several times and driving him into the nearest community.
"They told me I was going to freeze to death," he said. "It has been so cold, you feel like you are going to die the next second, but I take the next step. I am walking for all the tens of thousands who are like my son. No matter what, I am going to accomplish this."
Though he can't point to one event that triggered his march, he said his son Simon's needs have grown increasingly difficult to meet. Simon waited on a list for Applied Behaviour Analysis, an intensive treatment for autistic children but turned 7, the cutoff age, before reaching the top of the list, he said.
On Marinoiu's trek, locals have paid anonymously for hotel rooms while others have stopped along the road to bring him food. His daughter's Facebook group now has 1,400 members.
Marinoiu hopes to be in Ottawa today.
Hello Everyone,
It is currently 10:07 PM, we just got in about half an hour ago.
So, now the long message.
My father and I arrived on Parliament Hill at around 10:30 AM. Jamie
walked
with us a bit, and the Global National camera was the first to catch
us.
Senator Munson was there as promised to extend his greetings and
support.
Media cameras from A-Channel, CBC, Global National, and CTV/CJOH were
there.
As well as a reporter from the Ottawa Sun (we had a mini-photoshoot
with
their photoographer). We also did a CBC Radio Ottawa interview that
aired at
5:30 PM.
Myself, My father, and Lucie Filteau had a meeting with Mr. Clement at
12:00, most of us already know how that went (if you know what I mean).
We also had dinner with Mr. Mike Lake. He also gave us a mini-tour of Parliament. The library is wonderful.
Tomorrow morning there will be a press conference at 10:30 at
Parliament
(Unsure of exact location).
We also have one or two interviews lined up.
Does anyone have any ideas about my father's trip home. Not
transportation
wise, but Media wise? Should we contact them and let them know when he
arrives and such? What do you guys think?
I love you all sooooooo much. Thank you for everything that you've
done!
I will keep you all updated.
Please try not to call the cell-phone between 9:45 AM to 11:15 AM. It
would
be much appreciated.
<3 (<-- That's a heart sign if you look at it sideways!)
Lia Marinoiu
From Taline,
This was an incredibly busy day for the plaintiffs. We've been in dozens of interviews on and off camera with various media sources. AM640 News, CBC Newsworld, CBC French Radio, CTV, Star, Globe & Mail, Canadian Press, and CityNews to name a few.
Thanks to all the families who came out to support us at the hearing. You took time out from your busy daily lives and we truly appreciate this. A special thanks to NDP MPP Andrea Horwath and PC MPP Peter Shurman for attending. Your support means a great deal both to the families in the lawsuit and the entire autism community. Finally, thank you to Laura and Lillian for taking on the French interviews for us!
The morning started with arguments from our side. Our lawyer was questioned by the Judges pretty hard. Then when the government lawyer was up in the afternoon, he was questioned even harder. The court said they would not be releasing their decision until the summer.
Lastly, an update on Stefan Marinoiu. He made it to Ottawa and Senator Munson did indeed greet him. I understand he then met with the Federal Minister of Health, Tony Clement. There is a press conference scheduled for this morning on Parliament Hill at 10:30.
Taline
----------------------------------------------------------------------------------------------------------
NDP MPP Andrea Horwath Press Release:
February 11, 2008
ACTION ON AUTISM TREATMENT A MORAL IMPERATIVE, SAYS HORWATH
QUEEN’S PARK – Hamilton Centre MPP Andrea Horwath is pledging New Democrats will continue their political battle with the McGuinty government to ensure children with autism are no longer denied proper schooling or treatment in Ontario.
Joining the families of children with autism as a landmark court case began in Toronto today Horwath signalled that the pending legal decision won’t deter the NDP’s enduring commitment to seek justice for children with autism, who’ve been shut out of the public education system by controversial McGuinty government policies.
“It is unacceptable that these children have been and continue to be unable to obtain an education in this province because of their autism,” Horwath said.
“Despite all their promises, the McGuinty Liberals continue to fight families in court rather than deliver the specialized schooling to which every child is entitled and was supposed to receive regardless of age.”
Regardless of how the court rules, Horwath said Premier Dalton McGuinty still has “a moral imperative to do the right thing by children with autism and their families. New Democrats will continue to exert pressure in the Legislature to ensure the McGuinty government does the right thing.”
Horwath noted that many families struggle financially, sell or mortgage their homes and even go into debt to obtain the autism intervention programs the McGuinty government should be providing.
“What does it say about our province and its government when children with illness and disability are told there’s no place for them and their families are told they’re on their own? This callous and brutal approach must end.”
Under the McGuinty government, the waiting list for proven-effective treatment has grown by 1100 per cent to more than 980 children.
Horwath is the NDP Critic for Autism as well as Children and Youth Services.
-30-
Media contact: Sheila White 416-325-2777
------------------------------------------------------------------------------------------------------------
PC MPP Peter Shurman Press Release:
FOR IMMEDIATE RELEASE
FEBRUARY 11, 2008
Shurman critical of McGuinty government treatment of autistic children and their families
( Toronto ) – Thornhill Progressive Conservative MPP Peter Shurman stated that he believes the treatment by the McGuinty government of autistic children and their families is a “deplorable breach of trust”.
Shurman attended proceedings at the Ontario Court of Appeal, where a three-judge panel was asked to decide if a class-action lawsuit can go ahead on behalf of autistic children seeking treatment within the Ontario public school system. Shurman was present at the request of parents whose Liberal MPP had declined.
“Autistic children are entitled to an education, just like any other child in Ontario ,” said Shurman.
A March 2007 memorandum written by the Deputy Minister of Education entitled “Ministry of Education Response to the Report of the Reference Group on Autism Spectrum Disorders” stated that the focus of a Policy/Program Memorandum on the subject of Autism Spectrum Disorders would be the use of Applied Behavioural Analysis teaching practices and not Intensive Behavioural Intervention.
“Prior to the autumn 2007 election, the McGuinty government promised $10 million in funding to provide IBI treatment in schools,” stated Shurman, “By not allowing for Intensive Behavioural Intervention, or IBI, treatment within schools, the McGuinty government is forcing the parents of autistic children to choose between education and therapy.”
Currently, only two children in the province receive IBI therapy while attending public school full-time.
“This province needs a comprehensive strategy for education that addresses the unique needs of all Ontario children, including those with autism. What we don’t need is a government bent on denying access to the educational system to those who need it most,” said Shurman.
- 30 -
For more information:
Andrew Bowles
416-325-1415
-------------------------------------------------------------------------------------------------------------
Star
Scrap autism suit, lawyer says
Crown counsel argues `confusing' $1.2B claim against province rehashes families' old complaints
Feb 12, 2008
Tracey Tyler
LEGAL AFFAIRS REPORTER
A proposed $1.2 billion class-action lawsuit filed by parents of autistic children is a confusing grab bag of every gripe they've had against the province and their remaining pleas should be tossed out of court, a lawyer for Ontario's attorney general says.
"It feels as if the plaintiffs have taken every conceivable complaint ... they fed them into a blender, they pressed `puree' and out came a statement of claim," Crown counsel Robert Charney told a three-judge panel of the Ontario Court of Appeal yesterday
The families of six autistic children and their lawyers were in the province's highest court attempting to resurrect key portions of a lawsuit against the Ontario government and seven school boards that seeks redress for "the failures of autism services in Ontario."
The most "critical" issue for the families, their lawyer, David Baker, told the court yesterday, is whether they can establish a right to damages for breach of their Charter rights, which could allow them to recoup some of the cost of providing their children with therapy.
"My clients desperately wish to see their children in the public school system," Baker said. "They're saying `we have mortgaged our homes. We have sold our homes. We have emptied our RRSPs.'"
As many as 1,500 Ontario families could be affected, said Taline Sagharian, one of the plaintiffs, who estimates she and her husband, Harout, have spent at least $300,000 on a private education and treatment program for their son, Christopher, 11.
"He's responding positively," she said in an interview outside the courtroom yesterday.
Since programs known as effective in treating autism, such as "Intensive Behaviour Therapy," also called "Intensive Behaviour Intervention," generally aren't offered in Ontario's schools, parents say much of their time is taken up driving to treatment sessions, often in another community – taking their children out of the classroom and forcing them to choose between public education and therapy.
Last year, Superior Court Justice Maurice Cullity struck out claims by the families that alleged the defendants were negligent, deliberately misused their offices and violated the children's rights to security of the person. He allowed the case to proceed solely on the basis their equality rights have been violated.
But Charney told the panel headed by Justice Susan Lang this portion of the case should also be disposed of. The issues are moot because they were resolved by the appeal court in a similar case, known as the Wynberg decision in 2006, Charney argued.
The lawsuit should also be thrown out because it's so imprecisely worded that it's impossible to tell what the families want.
"Essentially, I see the claim here as very precise ... there is no IBI integration ... it's that you're doing zero," said Justice Paul Rouleau. "That's precise."
But Rouleau pressed Baker on why the province is legally required to do anything.
"I understand the difficulties these children are having," Rouleau said. "But I have to, as a judge, bring it back to legal terms."
While "operational decisions" are made by school boards, the province has a "residual" responsibility for special education programs and a duty to accommodate students with special needs and already does so by funding schools for the blind and deaf and special education programs for other students, sometimes past age 21, Baker said.
In the United States, all states offer autism therapy in the educational system, from age 3 up, he added.
The court reserved its decision.
-----------------------------------------------------------------------------------------------------------
-------------------------------------------------------------------------------------------------------------
Star
Bumpy start for plaintiffs at autism hearing
Feb 11, 2008
Tobi Cohen
THE CANADIAN PRESS
A $1.25-billion as-yet unapproved class-action lawsuit against seven school boards and the Ontario government over funding for specialized treatment for autistic children looks a lot like ``Swiss cheese," a lawyer representing the province said today.
"It's full of all kinds of holes," Robert Charney told a three-judge Ontario Court of Appeal panel during a daylong hearing.
Five families of autistic children are seeking the right to sue for damages should their class-action be certified. Charney argued the claim fails to specify exactly what sort of school-based programs the appellants want, and he suggested the plaintiffs are merely looking for cash to help pay for private school.
But while the judges didn't fully agree with Charney's suggestion the claim wasn't specific enough – even if they agreed it wasn't always clear – they wasted no time putting pressure on plaintiff David Baker, who wants the court to approve the potentially landmark lawsuit.
It's not exactly clear why the province should be considered legally responsible for the cost of the expensive, intensive therapy the families want for their children, Justice Paul Rouleau said.
"I understand the overall picture and I understand the difficulties these children are facing, but as a judge I have to bring it back to the legal claim," he said.
Baker argued the government has a duty to accommodate disabled students, but discriminates against those with autism, who can't always get both their therapy and education within the public school setting.
He suggested if the therapy can't be provided in regular schools, autistic kids could be accommodated at special schools like those for the blind and deaf.
Instead, he said, many parents have had to not only purchase their own specialized therapy, they've had to send their kids to private school to get it. So far just one family has been able to convince their children's school to allow a privately funded therapist into the classroom.
Anna Martini's sons Joshua, 10, and Noah, 9, were lucky to have a principal who recognized their needs, but it came at a cost.
"I've used up all my savings, used up RRSPs, put a tenant in my basement, borrowed money, remortgaged our house and I've had fundraisers every year," Martini said, noting she has fought for funding to help cover the $60,000 yearly cost per child for the specialized therapy her sons need.
"I'll keep doing it if that's what needs to be for their education."
The families are ultimately suing the province and school boards for negligence and damages for failing to provide and properly fund intensive behavioural intervention and applied behaviour analysis therapy.
Last March, Ontario Superior Court Justice Maurice Cullity sided with the provincial government in striking down several of the key claims, including negligence and damages.
But he let stand the discrimination claim, and in later dismissing the province's demand for $85,000 in legal costs, Cullity recognized the public importance of the issue, giving hope to the families that they might still have a case.
"In discrimination cases there is a provision for an award for damages that does not require proving that the government acted maliciously, and I hope the court will agree with that," Baker said outside the courtroom.
"The issue of damages is very important."
The panel has reserved its decision in the case.
Based on previous court rulings, the government wants the entire case tossed.
Education Minister Kathleen Wynne said last spring the province was working to roll out applied behaviour analysis in schools across Ontario, while intensive behavioural intervention would be used outside schools.
In the fall election campaign, the Liberals pledged $10 million for schools to deliver IBI therapy if re-elected, but the plaintiffs argue the McGuinty government has broken its promise.
An estimated 50,000 children and 150,000 adults in Canada have autism, which has been the subject of several legal battles across the country, most unsuccessful.
------------------------------------------------------------------------------------------------------------
Star
BATTLING FOR ADAM
Autism families' legal fight continues
`Make or break' moment in court challenge to allow therapists into classrooms to sit with autistic kids
Feb 11, 2008
Jim Wilkes
STAFF REPORTER
Mississauga mother Lynn Shane no longer wants to be forced to choose between her son's education and the vital therapy he needs for autism.
She and her husband are among a handful of families pursuing a class-action lawsuit against Queen's Park and seven school boards in an attempt to secure therapy in the classroom for their children.
The plaintiff families will be in the Ontario Court of Appeal today in what Shane describes as a "make or break" moment in their legal challenge.
The families suffered a setback last March when a Superior Court judge tossed out most of their claims without a trial.
Lawyers for the province and targeted boards are now seeking $85,000 in legal costs from the families, as well as dismissal of the rest of their claims. The families, who have asserted in court filings that they have spent life savings, remortgaged their homes and taken on extra jobs to pay for autism therapy, hope to restore the dismissed parts of their action.
The Shane family pulled 8-year-old Adam out of school after he completed Grade 2 last June.
His mother, 43, said they could no longer try to keep Adam's days free for school while fitting in 21 hours of Intensive Behaviour Intervention sessions each week for his neurological dysfunction. The government pays $40,000 a year toward the therapy.
"They're mutually exclusive, yet he needs them both," Lynn Shane said yesterday at their Mississauga home. "It was confusing for him to be out of school while he was in therapy and he'd miss so many parts of projects in school. It was heartbreaking for all of us."
She said teachers aren't trained on the implications of autism, which can include limited social skills, communication problems and repetitive behaviours.
Shane calls her son "an incredibly bright little fella" who memorized the ages and birthdays of all the adults at his school, something his teacher thought was a nice trait.
"He is very smart, but that's a skill he doesn't need to have," she said.
She and her husband, David, want to have a therapist sit with Adam in the classroom, to help him digest what is being taught.
In the meantime, she is home-schooling Adam while taking him to Burlington for therapy four days a week.
Education ministry spokesperson Patricia McNeil said the education ministry has no policy on allowing therapists into classrooms, saying school boards make that decision.
The Peel District School Board, among the boards named in the suit, forbids any parent or agency from paying for in-class help for students, including autistic therapists, said spokesperson Brian Woodland.
"No matter what the role, the concerns are there, because you have a child on a completely different program from anyone else, but you have a teacher employed to deliver that curriculum," Woodland said.
With files from Torstar News Service
DATE CHANGE
Thursday: FEB 14th, 2008 Autism Show
The heartbreak ...and hope of autism. Jason "J-Mac" McElwain inspired the world with his incredible shot-making at a high school basketball game. Larry talks to the teen and others about the disorder. Holly Robinson Peete, Doug Flutie and Toni Braxton join the discussion to bust myths and present breakthroughs. It's an uplifting hour with those who know!
Good Morning,
Stefan Marinoiu battled wind, frigid weather, snow and blistered feet on his way to Ottawa, however these elements were no match for his determination. Stefan walked up the steps of Parliament Hill yesterday morning at approx 11am to be greeted by Sen. Munson. He has been interviewed by a number of news outlets and is scheduled for a press conference today at Parliament Hill. He also had a meeting with Health Minister Tony Clement. According to Stefan, Mr. Clement passed the buck to the provinces!!!!! However, Stefan is still determined to continue to advocate for Autism services.
Stefan was featured on a number of news casts yesterday and there are a number of articles in the print media today, including the Belleville Intelligencer, Ottawa Sun and the Citizen. Please keep an eye out for additional media coverage throughout the day.
Thanks Stefan, you are a true inspiration.
Cheers,
Pat La Londe
http://www.parl.gc.ca/information/library/PRBpubs/prb0622-e.htm
The document above was prepared by the Library of Parliament and
clearly
demonstrates why we need a National Autism Strategy.
The discrepancy between the provinces and lack of uniformity or
National standards makes the need for a National Autism Strategy all the more pressing.
Andrew Kavchak
Ottawa
Devoted dad gets meeting with health minister
Posted By Aedan Helmer
Feb 12, 2008 The Intelligencer ( Belleville ONT)
When Stefan Marinoiu walked out the front door of his Scarborough home nearly two weeks ago, bound for Parliament Hill, he wasnt expecting face time with a federal cabinet minister.
But after an arduous 450-km trek on foot through bitter cold, the 49-year-old autism activist was invited inside Health Minister Tony Clements chambers for a one-on-one meeting.
Marinoiu, whose 15-year-old son Simon is autistic, said the protest is a personal cause, but its also for all the parents of autistic children.
After waiting several years for behavioural therapy, the Marinoiu family was told Simon was too old for treatment when he finally reached the top of the waiting list.
Marinoiu wrote letters and received polite responses, but no action from government officials, while his son's condition worsened.
His story is becoming all too common, said Liberal Senator Jim Munson, who greeted Marinoiu as he arrived on the steps of Parliament Hill.
"From my perspective, we're in a crisis," said Munson. "Governments have a moral and ethical obligation to pay attention."
A recent Senate report indicated one in 166 Canadians - approximately 48,000 children aged 0-19, and 144,000 adults - are being diagnosed with autism.
After meeting with Clement, Marinoiu said the minister passed the buck to the provinces.
"I'm a little bit discouraged, but this is just one battle," said Marinoiu. "You lose one battle but you cannot lose the war
COURT OF APPEAL: PARENTS' CLASS ACTION
Autism suit off target, Ontario lawyer argues
He calls it a mess that was 'fed into a blender to purée'
KIRK MAKIN
JUSTICE REPORTER
February 12, 2008
A class action lawsuit launched by parents of autistic children is ill conceived, moot and off target, an Ontario government lawyer said yesterday in the province's latest defence of its approach to the debilitating syndrome.
Lawyer Robert Charney told the Ontario Court of Appeal that the class action can best be described as a 280-paragraph mess that was "fed into a blender to purée."
However, a lawyer for the plaintiffs, David Baker, dismissed Mr. Charney's approach as being typical of a government whose stingy attitude has forced families with autistic children to sell their homes and flee to more generous jurisdictions - such as Alberta, B.C. and even the United States.
"This treatment has been available all over the U.S. for at least 15 years," Mr. Baker told reporters afterward. "It's unconscionable that it is not available here as well. In Ontario, you have to choose between education and therapy."
Launched in 2004, the lawsuit seeks approximately $1.25-billion in damages for up to 1,500 Ontario families who have spent heavily to gain intensive treatment - known as ABA (applied behaviour analysis) or IBI (intensive behavioural intervention).
They argue that the school system must fulfill its statutory duty to provide children with a proper education, whether that means supplying an IBI specialist for each autistic student, training teachers in IBI or providing special schools.
Many of the most active plaintiffs packed the courtroom yesterday. One of them, Lynn Shane, told reporters that she had to remove her eight-year-old son, Adam, from school last September. She said that he takes 21 hours of IBI treatment each week and the constant coming and going had become too disruptive for him.
"We would love him to still be in school," Ms. Shane said. "Adam is at a level where he would benefit hugely from being integrated."
Mr. Baker told the court that each school or school board takes a piecemeal approach that shares one assumption in common: "It is based on a stereotypical assumption that autistic kids receiving IBI don't need an education. But autistic kids have the same need for an education as any other kids."
Both sides are appealing a 2007 Ontario Superior Court judge's decision to strike out many crucial aspects of the statement of claim that forms the basis of the class action.
In that ruling, Mr. Justice Maurice Cullity criticized the lawsuit for being "a maze" that "bombarded all targets." He said that the plaintiffs have no viable action for negligence and misfeasance.
While Judge Cullity left intact a claim that Ontario has breached the Charter of Rights equality provision, he said that the plaintiffs cannot collect damages even if they succeed.
Mr. Charney argued yesterday to eliminate the equality grounds from the lawsuit as well, effectively destroying the suit in its entirety.
The class action is the third major attack on government policies in the past decade. The previous two went down to defeat after initial victories.
In a case known as Auton, the Supreme Court of Canada ultimately ruled against a group of B.C. parents who challenged the exclusion of intensive autism treatment from the province's health insurance.
In the other case, a lawsuit launched by a group of Ontario families - known as the Wynberg-Deskin group - was rejected by the Ontario Court of Appeal.
Mr. Charney argued strenuously yesterday that the previous Auton and Wynberg-Deskin rulings cut all the ground out from under Mr. Baker's class action.
However, Mr. Baker argued that, unlike the previous cases, his class action is distinct and deserves to move onward toward a trial because it attacks educational policies. Instead of targeting health policies, it alleges discriminatory behaviour by a school system that has not made serious attempts to accommodate autistic children.
February 11, 2008
ACTION ON AUTISM TREATMENT A MORAL IMPERATIVE, SAYS HORWATH
QUEEN’S PARK – Hamilton Centre MPP Andrea Horwath is pledging New Democrats will continue their political battle with the McGuinty government to ensure children with autism are no longer denied proper schooling or treatment in Ontario.
Joining the families of children with autism as a landmark court case began in Toronto today Horwath signalled that the pending legal decision won’t deter the NDP’s enduring commitment to seek justice for children with autism, who’ve been shut out of the public education system by controversial McGuinty government policies.
“It is unacceptable that these children have been and continue to be unable to obtain an education in this province because of their autism,” Horwath said.
“Despite all their promises, the McGuinty Liberals continue to fight families in court rather than deliver the specialized schooling to which every child is entitled and was supposed to receive regardless of age.”
Regardless of how the court rules, Horwath said Premier Dalton McGuinty still has “a moral imperative to do the right thing by children with autism and their families. New Democrats will continue to exert pressure in the Legislature to ensure the McGuinty government does the right thing.”
Horwath noted that many families struggle financially, sell or mortgage their homes and even go into debt to obtain the autism intervention programs the McGuinty government should be providing.
“What does it say about our province and its government when children with illness and disability are told there’s no place for them and their families are told they’re on their own? This callous and brutal approach must end.”
Under the McGuinty government, the waiting list for proven-effective treatment has grown by 1100 per cent to more than 980 children.
Horwath is the NDP Critic for Autism as well as Children and Youth Services.
-30-
Media contact: Sheila White 416-325-2777
------------------------------------------------------------
FeatBC Discussion Board: Room Three: Discussions about Government
Topics
------------------------------------------------------------
Posted by Andrew Kavchak (Kavchak) on Tuesday, February 12, 2008 -
11:04
am:
Hi Folks,
The Ottawa television "A Channel" station broadcasted a report on Mr.
Marinoiu's arrival on Parliament Hill yesterday and posted the video
on their website at:
http://www.achannel.ca/ottawa/news_53543.aspx
Palm donates smart phones to autistic people
By: Rafael Ruffolo
ComputerWorld Canada (05 Feb 2008)
Toronto's Geneva Centre for Autism is hoping a recent donation of Palm
T|X
smart phones will help give those suffering with the neurological
disorder
greater independence in both their personal and business lives.
Palm Canada Inc. announced Thursday the donation of 100 new T|X handheld
devices to the centre as part of their e-Learning pilot program - an
initiative aimed at helping teens and young adults with suffer from the
spectrum disorder. The Geneva Centre said the smartphones are a perfect
fit
for the program's participants as they promote visual-learning and
communication in autistic individuals.
"In a compact, user-friendly way, this allows them to keep track of
their
schedules and manage their own life without worrying," Margaret Whelan,
executive director of the Geneva Centre for Autism, said.
The simple fact of knowing that something has a beginning and an end,
Whelan
said, is extremely important to relieving the anxiety and stress people
with
the disorder face on a daily basis.
"If you are going to school and you know you are going to be working on
a
math project from 10:30 to 11:45, although you may not enjoy it, you at
least know when it's going end," Whelan said. "But without any visual
cues
or reminders to how long the class is, those with Autism start to have
real
anxiety as to when it will end. Can you imagine if you showed up at work
and
no one ever indicated to you when you were going to be allowed to
leave?"
From ComputerWorld CanadaEmbattled Palm brings Treo 750 to Canada
For Palm, the program is an extension of similar initiatives the company
has
undertaken with other neurological disorders, such as amnesia. Jordan
Silverberg, enterprise sales manager at Palm Canada, said the
organizational
tools in the device - including touch screen, agenda, and address book -
lends itself well to replacing paper-based visual cues and reminders.
"The feedback we've gotten so far have been very positive," Silverberg
said.
"It's easy-to-use and they love the electronic cues and prompts on the
device. It's a huge assistance that works to replace paper cue cards,
organize the individual's life and give them a sense of independence."
But despite the effect the phones might have on an Autistic individual's
personal life, Whelan said, the devices will have an impact on their
working
lives as well.
"For people on the spectrum in the business world, we know there are
natural
challenges to successful employment," Whelan said. "One is following
daily
routines, which we know addresses, and the other is learning how to fill
their leisure time during lunch and coffee breaks. The fact that these
devices allow games or music to be loaded onto them gives individuals
something to do to fill out their spare time and no longer leaves them
the
odd man out."
In addition to that, she said, the anxiety provoking situations of
having to
go to a big meeting or appointment can also be alleviated with the
device.
"If they need to help calm themselves down to get to the job at hand,
having
a loaded program that reminds them what they need to do in a particular
situation will stop them from being nervous," Whelan said. "In using the
device will, they will not attract attention to themselves. This allows
them
to quietly use it to and get control of their lives again."
But maybe one of the most important aspects of all, according to Whelan,
is
the overall boost to one's self-esteem the devices can provide.
"It's not very cool to be carrying around big bulky paper reminders and
visual schedules, so there's a very strong cool factor associated with
these
Palms," she said.
Article on cbc.com Feb 11th:
http://www.cbc.ca/news/background/autism/
Shows summary of funding coverage by province at the bottom of it.
Crown counsel argues `confusing' $1.2B claim against province rehashes families' old complaints
Feb 12, 2008 04:30 AM
Tracey Tyler
LEGAL AFFAIRS REPORTER
A proposed $1.2 billion class-action lawsuit filed by parents of autistic children is a confusing grab bag of every gripe they've had against the province and their remaining pleas should be tossed out of court, a lawyer for Ontario's attorney general says.
"It feels as if the plaintiffs have taken every conceivable complaint ... they fed them into a blender, they pressed `puree' and out came a statement of claim," Crown counsel Robert Charney told a three-judge panel of the Ontario Court of Appeal yesterday
The families of six autistic children and their lawyers were in the province's highest court attempting to resurrect key portions of a lawsuit against the Ontario government and seven school boards that seeks redress for "the failures of autism services in Ontario."
The most "critical" issue for the families, their lawyer, David Baker, told the court yesterday, is whether they can establish a right to damages for breach of their Charter rights, which could allow them to recoup some of the cost of providing their children with therapy.
"My clients desperately wish to see their children in the public school system," Baker said. "They're saying `we have mortgaged our homes. We have sold our homes. We have emptied our RRSPs.'"
As many as 1,500 Ontario families could be affected, said Taline Sagharian, one of the plaintiffs, who estimates she and her husband, Harout, have spent at least $300,000 on a private education and treatment program for their son, Christopher, 11.
"He's responding positively," she said in an interview outside the courtroom yesterday.
Since programs known as effective in treating autism, such as "Intensive Behaviour Therapy," also called "Intensive Behaviour Intervention," generally aren't offered in Ontario's schools, parents say much of their time is taken up driving to treatment sessions, often in another community – taking their children out of the classroom and forcing them to choose between public education and therapy.
Last year, Superior Court Justice Maurice Cullity struck out claims by the families that alleged the defendants were negligent, deliberately misused their offices and violated the children's rights to security of the person. He allowed the case to proceed solely on the basis their equality rights have been violated.
But Charney told the panel headed by Justice Susan Lang this portion of the case should also be disposed of. The issues are moot because they were resolved by the appeal court in a similar case, known as the Wynberg decision in 2006, Charney argued.
The lawsuit should also be thrown out because it's so imprecisely worded that it's impossible to tell what the families want.
"Essentially, I see the claim here as very precise ... there is no IBI integration ... it's that you're doing zero," said Justice Paul Rouleau. "That's precise."
But Rouleau pressed Baker on why the province is legally required to do anything.
"I understand the difficulties these children are having," Rouleau said. "But I have to, as a judge, bring it back to legal terms."
While "operational decisions" are made by school boards, the province has a "residual" responsibility for special education programs and a duty to accommodate students with special needs and already does so by funding schools for the blind and deaf and special education programs for other students, sometimes past age 21, Baker said.
In the United States, all states offer autism therapy in the educational system, from age 3 up, he added.
The court reserved its decision.
Ontario Political News - Clip 7 (limit 500) Feb 11 2008 14:12:00 - Source: POL [The Canadian Press]
Autism Lawsuit
TORONTO - Lawyers behind a class-action lawsuit against the
**>Ontario<** government over funding for specialized treatment for autistic children are getting a rough ride from the province's highest court.
A three-judge **>Ontario<** Court of Appeal panel is wasting little time putting pressure on David Baker, who wants the court to approve the $1.25-billion class action.
Justice Paul Rouleau says he's not clear why the province should be considered legally responsible for the cost of the expensive, intensive therapy the families want for their kids.
Baker says the government has a duty to accommodate disabled students, but discriminates against those with autism, who can't get both their therapy and education in public school.
He says if the therapy can't be provided in school, autistic kids could be accommodated at special schools like those for the blind and deaf.
The plaintiffs are hoping to persuade court that they should be allowed to sue for damages if their class action is eventually certified.
(The Canadian Press)
Parents of autistic kids fight for right to sue Ontario
Want their children to receive expensive, specialized therapies in schools
Last Updated: Monday, February 11, 2008 | 8:25 AM ET
The Canadian Press
Parents fighting to have their autistic children receive specialized therapies within the public education system go before Ontario's highest court on Monday in an emotionally fraught case that has huge financial stakes for the families and taxpayers.
Five families are trying to sue the Ontario government and seven school boards for negligence and damages, accusing them of failing to provide or properly fund the expensive therapies in schools.
In a one-day hearing Monday, described as a "make or break" day by one parent involved, they will try to persuade the Ontario Court of Appeal that they should be allowed to sue for damages if the class action they have filed is eventually certified.
Known as intensive behavioural intervention and applied behaviour analysis, the therapies for the poorly understood neurological condition that causes developmental disability and behaviour problems can cost between $30,000 to $80,000 a year for each child.
"Families go to extremes," said Taline Sagharian, of Richmond Hill, Ont., whose 11-year-old son Christopher is autistic.
"Six years ago, we had to sell our house. We've cashed in our investments and any assets that we have … and we continue to go through financial problems."
In 2004, the families filed a $1.25-billion lawsuit, which has yet to be certified as a class action, arguing their children were victims of discrimination because other kids with special needs receive both therapy and their education within the publicly funded school system.
Last March, Ontario Superior Court Justice Maurice Cullity sided with the provincial government in striking down several of the key claims, including negligence and damages.
However, he let stand the discrimination claim and by later dismissing the province's demand for $85,000 in legal costs, Cullity recognized the public importance of the issue and gave hope to the families that they might still have a case.
The government, based on previous court rulings, wants the entire case tossed.
Toronto lawyer David Baker, who is acting for the families, calls it unconscionable that parents are faced with what they view as a stark choice between therapy and education for their kids.
"In our education system, there is no other group receiving therapy — whether it's in a hospital, in residential treatment, any form of treatment you can name — who is deprived of an education,"
Baker said.
Some Ontario families have moved to Alberta or B.C. where autistic children can receive both, he said, while autistic children in the United States are able to access the therapies through the education system until the age of 21.
Government promised $10 million
Education Minister Kathleen Wynne said last spring the province was working to roll out applied behaviour analysis in schools across Ontario while intensive behavioural intervention, or IBI, would be used outside of schools.
In the election campaign in the fall, the Liberal party pledged $10 million for schools to deliver IBI therapy if re-elected, but the plaintiffs argue the McGuinty government has broken its promise.
An estimated 50,000 children and 150,000 adults in Canada have autism, which has been the subject of several legal battles across the country, most unsuccessful.
In the interim, the financial struggles continue for Ontario families with autistic children.
"I find it extremely difficult to watch the other kids on our street hop on the school bus in the morning and go to school while my son has to stay home," Sagharian said.
"It's difficult enough to raise a child with autism without having to fight for his basic rights."
© The Canadian Press, 2008
In Depth
Autism
Making sense of a confusing world
February 11, 2008
A child sits flapping his arms wildly in the air; another expresses his frustration by pushing aside a teacher's aide, a third retreats into playing computer games instead of playing with friends.
All three are showing signs of autism, a common neurological disorder. Autism rates have been rising steadily — even dramatically — in Canada. An estimated 190,000 Canadian children have the disorder. The most recent epidemiological studies suggest that the rate of autism has increased from 40 cases per 100,000 to 60 cases.
Autism was first described in the early 1940s by two doctors who were working independently of each other. Leo Kanner and Hans Asperger identified a set of symptoms they found among the children they were studying. Both used the word autism — from the Greek word for self — to describe the children they treated who seemed enclosed in their own solitary worlds.
Kanner was a child psychologist at Johns Hopkins Hospital in Baltimore; Asperger — whose work was published a year after Kanner's — was a pediatrician in Vienna.
Since Asperger, unlike Kanner, included people who had average to high IQs in his definition, the scientific community has reserved "Asperger syndrome" to describe prodigies and certain high functioning people with autistic disorder. Bill Gates, founder of Microsoft and the world's richest man, is thought by many to have the characteristics of Asperger syndrome. He has often been seen rocking and tends to speak in monotones — both habits acknowledged to be symptoms of Asperger.
Seventy per cent of people with other forms of autistic disorders suffer from mild to severe mental retardation.
What is autism?
The term is used in two ways:
• To refer specifically to Autistic Disorder (classic autism).
• To refer to five Autism Spectrum Disorders described under the diagnostic category of Pervasive Developmental Disorders (PDD) that appear in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) of the American Psychiatric Association.
Autism Spectrum Disorder is a neurological condition that causes developmental disability. It affects the way the brain functions and results in difficulties with communication and social interaction. People with the disorder also exhibit unusual patterns of behaviour, activities and interests.
People with ASDs could share certain behavioural, social and communication characteristics, but they can vary widely in the effect it has on their day-to-day lives. Some people can function well, others are locked in a world of their own. At its most severe, people with autism can exhibit extremely repetitive and unusual behaviours like self-injury and aggression.
If untreated, the symptoms can be very persistent and difficult to change. But in its mildest forms, autism is more like a personality difference linked to difficulties in understanding social conventions.
What are some of the symptoms of ASDs?
There is no single symptom that would lead to a diagnosis of autism. But someone who shows a number of the following characteristics and behaviours would likely be diagnosed with an ASD:
• Shows no interest in other people.
• May be interested in people, but does not know how to talk, play with, or relate to them.
• Initiating and maintaining a conversation is usually difficult.
• Speech and language skills may begin to develop and then be lost, or they may develop very slowly, or they may never develop.
• Difficulty interpreting non-verbal communication such as social distance cues, or the use of gestures and facial cues, like smiles, that most of us take for granted.
• Repeated ritualistic actions such as spinning, rocking, staring, finger flapping, and hitting self.
• Restricted interests and seemingly odd habits, like focusing obsessively on only one thing, idea, or activity.
• Sensory input may be scrambled and overwhelming.
As well, people with ASDs may have secondary problems such as:
• Neurological disorders including epilepsy.
• Gastro-intestinal problems.
• Fine and gross motor deficits.
• Anxiety and depression.
Children with ASDs develop motor, language, cognitive and social skills at different rates from other children their age. For instance, they may be very good at solving math problems but have great difficulty making friends or talking.
How are ASDs diagnosed?
There is no single test that will confirm that someone has an ASD. A diagnosis is based on the number and pattern of typical characteristics and on the observation of specific behaviours and disabilities.
Someone with a mild case could go undiagnosed for years and may only be detected when the person goes through a crisis that brings them in contact with professionals who are able to recognize the disorder.
What causes ASDs?
Nobody's certain. It's generally accepted that autism is a neurological disorder. Research is focusing on genetics, differences in brain function, environmental factors, viral infections and immune responses and deficiencies.
In 2001, a Wired magazine article coined the term "Geek Syndrome" after researchers in California (particularly Silicon Valley) noticed a three-fold surge over 10 years in the number of reported cases of autism.
Researchers have found children with autistic disorders are more common among the offspring of parents in particular careers. In the mid-1990s, clinical psychologist Simon Baron-Cohen compared the professional backgrounds of parents and grandparents of almost 1,000 children with autism to groups of parents of children with Tourette syndrome, Down syndrome and other language delays, and to a control group of parents chosen randomly. His findings showed that the fathers and grandfathers of autistic children were twice as likely to be engineers as the parents of children who were not autistic.
A study published in the journal Nature Genetics on Feb. 18, 2007, pinpointed a new region of DNA thought to cause at least some cases of autism in children. The work involved abnormalities in chromosomes, gene codes and proteins. Between seven and 12 per cent of the families showed individuals sharing possibly detrimental chromosome abnormalities. A linkage analysis that searched for regions of the genome that might be shared by individuals with autism spectrum disorder turned up a region on chromosome 11 that was not previously linked to the risk of developing autism.
How is autism treated?
Some people with mild forms of autism may never need treatment. They can function well and may even excel. However, those with severe forms of the disorder are unable to function and may benefit from active therapy.
There are several ways people with autism are treated and there is plenty of debate over what kinds of treatments offer the most success. Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) are designed to actively engage children with communication, socialization, learning and behavioural problems.
ABA can be extremely expensive as it involves one-on-one teaching for up to 40 hours per week. Costs range from $30,000 to $80,000 a year, according to Autism Society Canada. IBI is also an intensive program that can involve either one-on-one therapy or sessions with small groups.
Other types of therapy can combine elements of physiotherapy, counselling, development of motor and language skills, diet and medication.
Provincial medical plans offer varying levels of coverage for autism therapy. Some will also cover all or part of the cost of intensive ABA and IBI programs.
• Alberta pays up to $60,000 a year per child up to age 18 for ABA/IBA programs.
• Ontario covers ABA/IBI programs for qualifying children under the age of six — older children are also eligible if an assessment determines they need more treatment.
• British Columbia pays up to $20,000 annually for treatment for children up to age six. It pays $6,000 annually for treatment of children six years of age and older.
• Nova Scotia pays for an Early Intensive Behaviour Intervention Program. Direct EIBI is provided over the first six months for 15 hours a week, and is gradually reduced over the following six months (10 hours per week for three months and then five to six hours a week for the remaining three months). The number of children selected for the program depends on the resources available through local District Health Authorities.
• P.E.I. covers IBI programs for up to $200 per week.
• In New Brunswick, the government will pay for intervention services for a child diagnosed with Autism Spectrum Disorder until the beginning of the school year in the year they turn five.
• Manitoba pays up to $6,000 a year for preschoolers for up to 36 hours of ABA treatment a week, with five hours of that treatment provided by the family.
• Newfoundland and Labrador will pay up to $40,000 a year per child under the age of six for 30 hours a week of ABA/IBI treatment for two years.
• Saskatchewan offers up to 10 hours of therapy under its Autism Early Childhood Therapy Program. In 2006, six children were covered.
• Quebec's Autism Action Plan offers 20 hours a week of ABA/IBI therapy for children between the ages of two and five.
• The Yukon government pays for ABA/IBI treatment for children up to the age of 19, with no yearly maximum.
• The Northwest Territories pays for ABA/IBI treatment for pre-school and school-aged children.
• Nunavut has no specific program for children with autism.
Source for funding details: Library of Parliament
Autism Treatment Services of Canada
Autism Society of Canada
National Alliance for Autism Research
Geneva Centre for Autism
Autism and School-based Programming (personal page)
(Note: CBC does not endorse and is not responsible for the content of external sites - links will open in new window)
Some Autism Spectrum Disorders
Autistic disorder: This is also known as classic autism. It affects ability to communicate with and relate to other people. Some people with autistic disorder can speak and interact while some who are more severely affected are completely non-verbal.
Asperger syndrome: People with Asperger syndrome do not have a delay in speech development, but may have a range of deficits in social development. They often also have obsessive, repetitive behaviours and preoccupations such as rocking or hand waving.
Childhood Disintegrative Disorder (CDD): CDD is also known as regressive autism. Children with CDD usually develop normally for two to four years before they begin to lose language, social skills and interest in their environment.
Source: National Alliance for Autism Research
Living with Autism: "Losing My Little Boy"
A Sweet, Bubbly Boy
From the time he was born, Ryan was the most social of the Kalkowskis' three children. "He was full of big smiles and would let anyone hold him," recalls Nicole. "As a toddler, when he heard a group of adults laughing about something, he'd let out a big chuckle the second everyone was quiet. He pretended to understand what we were talking about so he could be part of the group."
Beyond being "a ham," as Nicole affectionately puts it, Ryan was on track developmentally. He waved, blew kisses, and by 14 months, he was putting two words together, such as "hold you." Leading the typical toddler life, Ryan had weekly playdates and was toted around to the mall, to his sisters' activities, and to their school. "The school was also our church, so we were there a lot and Ryan was well-known," she says. "Everyone was excited to see him."
His biggest admirers, however, were at home. His sisters adored their bedtime routine with Ryan, who would grab his blankie and head to each of the girls' rooms to say goodnight. "He gave them a big hug and blew kisses," says Tim, who owns a contracting business. "Sometimes he crawled into their beds to cuddle. The girls couldn't get enough."
Find this article at: http://www.redbookmag.com/home/living-with-autism-0208-2
Ask Lindsay Moir:
"Floating through the system": school unsure of child's level of functioning
Friday, February 08, 2008
Question:
My son has a Language Learning Disability and is formally identified as Communication. We are having an incredibly difficult time getting hard data on his academic levels from the school. According to his IEP his program is modified "and is not based on the Grade 5 curriculum." When we ask for hard data we are told that "he is being exposed to the Grade 5 curriculum but is marked differently." His report card is 60% across the board and the comments deal positively with his effort and behaviour.
Our private speech person says that programs for students like our son are "mostly accommodated, and rarely modified". Our son's total program is MODIFIED. Our son is a bright boy, but seems to be floating through the system. He gets EA support but there seems to be no consistent plan to direct the EA — she kind of "makes it up as she goes along."
When we met with the principal she told us that they can't put any details in the IEP about what the "program" is based on because it is "fluid" and reacts to any gaps that appear in his learning . . .
Needless to say we are very frustrated and sense that our son is not getting a good education.
What is this all about? Where do we go from here?
Answer:
It is impossible to do good programming without a good BASELINE. If the school cannot tell you your child's level of functioning, then how did they decide what needs to be taught? There should be a full academic assessment done immediately. Take the Learning Outcomes from the Ministry of Education website for Grade 3, Grade 4, Grade 5 for each of the core subject areas and sit down with his teachers and candidly look at each outcome in relation to your son. He likely will have mastered some outcomes for every subject in every grade — but needs to be taught the ones that he did not learn — this is what his EA should be systematically working on in her time with him. It is called "AN INDIVIDUAL EDUCATION PROGRAM" The school should regularly re-assess to find both skills acquired, and those that need more study. "Exposure" is not enough to ensure learning.
Your speech person is right! Most LD students have accommodation (different ways to learn the age and grade appropriate work). Modification (work at a different grade level) is usually a temporary "catch up" strategy for newly diagnosed LD students. Sometimes "modification" is a matter of "dumbing down" the work so that support is NOT required. This is definitely easier for the school, than providing accommodation and support so that he can function at grade level.
Remember that all decisions must be based on what is BEST FOR THE CHILD, not what is EASIER FOR THE SCHOOL.
You did not allude to any technology, but LD students as a group, benefit from a wide range of technology — from audio books to voice-to-print software, from text-to-voice technology to hand-held digital recorders. If technology would work for him, there is a grant (Special Equipment Amount) which covers the majority of the cost of such equipment. Money should not be the issue, if you have the appropriate documentation.
Every IEP is "fluid" — that is why the Ministry set-up IEPs to be "a living document that can be revisited at any time". The position of the Principal is simplly unacceptable.
In Special Education Transformation, the Ministry is clear that IEPs need to be strengthened and report cards need to be revised for Special Education students. It was a common complaint of parents across the province that hard data was hard to find and measureable IEPs were rare. Changes to both IEP requirements and the Report Card are underway.
By definition, Learning Disabled students have average to above-average intelligence, but have a condition that interferes with their learning. If we can accommodate (or compensate for) their learning disability, then they should be able to function at, or above, grade level! That is why "dumbing down" your son's program is not acceptable!
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.
`Make or break' moment in court challenge to allow therapists into classrooms to sit with autistic kids
Feb 11, 2008 04:30 AM
Jim Wilkes
STAFF REPORTER
Mississauga mother Lynn Shane no longer wants to be forced to choose between her son's education and the vital therapy he needs for autism.
She and her husband are among a handful of families pursuing a class-action lawsuit against Queen's Park and seven school boards in an attempt to secure therapy in the classroom for their children.
The plaintiff families will be in the Ontario Court of Appeal today in what Shane describes as a "make or break" moment in their legal challenge.
The families suffered a setback last March when a Superior Court judge tossed out most of their claims without a trial.
Lawyers for the province and targeted boards are now seeking $85,000 in legal costs from the families, as well as dismissal of the rest of their claims. The families, who have asserted in court filings that they have spent life savings, remortgaged their homes and taken on extra jobs to pay for autism therapy, hope to restore the dismissed parts of their action.
The Shane family pulled 8-year-old Adam out of school after he completed Grade 2 last June.
His mother, 43, said they could no longer try to keep Adam's days free for school while fitting in 21 hours of Intensive Behaviour Intervention sessions each week for his neurological dysfunction. The government pays $40,000 a year toward the therapy.
"They're mutually exclusive, yet he needs them both," Lynn Shane said yesterday at their Mississauga home. "It was confusing for him to be out of school while he was in therapy and he'd miss so many parts of projects in school. It was heartbreaking for all of us."
She said teachers aren't trained on the implications of autism, which can include limited social skills, communication problems and repetitive behaviours.
Shane calls her son "an incredibly bright little fella" who memorized the ages and birthdays of all the adults at his school, something his teacher thought was a nice trait.
"He is very smart, but that's a skill he doesn't need to have," she said.
She and her husband, David, want to have a therapist sit with Adam in the classroom, to help him digest what is being taught.
In the meantime, she is home-schooling Adam while taking him to Burlington for therapy four days a week.
Education ministry spokesperson Patricia McNeil said the education ministry has no policy on allowing therapists into classrooms, saying school boards make that decision.
The Peel District School Board, among the boards named in the suit, forbids any parent or agency from paying for in-class help for students, including autistic therapists, said spokesperson Brian Woodland.
"No matter what the role, the concerns are there, because you have a child on a completely different program from anyone else, but you have a teacher employed to deliver that curriculum," Woodland said.
With files from Torstar News Service
Rainbow Country Snowmobile Association
Volunteer President & General Manager: Dennis Lendrum
182 Syroid St Espanola, ON P5E 1G4
705-869-0164 Cell 705-869-9135 email: dennis@rcsasnow.com
Secretary Treasurer: Betty Heis
R.R. 1, Site 12, Comp 11, Mindemoya, ON P0P 1S0
Phone/Fax: 705-377-5158 email: betty@rcsasnow.com
Visit our Website at www.rcsasnow.com
I am very pleased that the 5 clubs within RCSA have agreed to name the new long weekend in February as “Autism Awareness Ride Weekend”
We will be offering a guided snowmobile tour to anybody that wants to participate. “Bring your cameras”
The ride will start Saturday February 16th, 2008 (9am) at the Pinewood Motor Inn (705) 869-3460 in Espanola Ontario.
We will ride through the LaCloche Mountains to Manitoulin Island for lunch, and then we will ride to Killarney for dinner and a night of relaxation at the Killarney Bay Inn. (705) 287-2011
Sunday we will ride to some of the fantastic sightings in the Killarney area and back to the Killarney Bay Inn for dinner and a night of relaxation.
Monday February 18th, 2008 we will leave the Killarney Bay Inn at (9am) and ride back to Espanola (Pinewood Motor Inn) for 1 pm.
Book your rooms early, as the motels will fill up fast.
Please confirm your intent, as I need to make lunch reservations.
Yours in Safe Snowmobiling Always
There is nothing Stronger than the Heart of a Volunteer
Dennis Lendrum
End of mailing
February 9th, 2008-February 12th 2008
AFA (The Alliance for Families with Autism) prepares these news articles as a courtesy to your inbox and can be found archived at: (AS MENTIONED EARLIER- MAILINGS FOR MARCH WILL OCCUR VIA THE BLOG ONLY)
www.autismnewsarticles.blogspot.com
visit often
Send your articles to:
Ktchmeifucan2002@yahoo.ca
NOTE: AFA appreciates ALL feedback on this mailout DIRECTLY to autismafa@yahoo.ca
To add a friend to our E-List, Email autismafa@yahoo.ca
When sending in special event information – please send it in Adobe/pdf or in an email as text so we can promptly post it. AFA thanks you for all of your articles, and special event postings!
AFA executive Pat Lalonde, with other members, along with other community supports, agency supports, fellow advocates, fellow advocate groups, OAC, Senator Munson, friends and generally great people in our great country have banded together to make Mr. Stefan Marinoiu’s Journey unforgettable, for this AFA sends many thanks. Follow the stories below:
----- Original Message -----
From: 'S MARINOIU'
To: info@autismcanada.org
Sent: Wed Feb 6 17:02
Subject: Fwd: Stefan Marinoiu
Hello,
Today (February 6 2008), a representative by the name of Laurie Mawlam
contacted my mother inquiring about my father, Stefan Marinoiu.
As we speak, my father, Stefan Marinoiu, is walking to Ottawa in order to
raise awareness about Autism and its underfunded programs.
He left our house Thursday January 31st without telling my mother or myself
anything. He talked of doing a walk for Autism, but despite my mothers
suggestions to plan an organized, well thought out trek, he left on his own
impulse.
On February 2nd (If my memory suits me well) He called our house to let us
know that he was in Newtonville Ontario due to the fact that a kind stranger
picked him up in order to let him have some rest.
He is currently walking on Highway 2 East Towards Ottawa, a kind stranger
from Trenton Ontario called our house yesterday (February 5 2008) to let us
know that he had stopped there, but he is still continuing his walk.
---
Laurie contacted my mother to see if there was a way to reach my father, but
we haven't heard from him since Sunday Feb 3.
I have created a facebook page to promote my father's journey and to try and
find out from people around Ontario where he is now, and how far he has made
it in his trek.
Laurie let my mother know that Senator Munson wanted to meet my father upon
his arrival in Ottawa.
The link for the Facebook group is:
http://hs.facebook.com/group.php\?gid=8363327485
I am currently trying to contact media in order to promote his story so that
he doesn't "walk for nothing".
I am hoping this information may be of some help for Laurie to contact him.
Thank you for your time,
Lia M
Autism activist treks through Napanee
Posted By Micah Luxen
Posted 5 days ago
With a bright pink sign for autism, one man, Stefan Marinoiu, walks alone down the highway, making his way from Toronto to Ottawa in the cold.
He’s already walked six days at three kilometres an hour with an injured foot, but Marinoiu is going all the way to Ottawa for his 15-year-old, who has autism. The determined father says autistic children need much more support from the government.
“[The government] is telling me they have no resources for us but as autistic children get older, life gets more difficult, so we need more help, and I’m going to the federal government to ask them for it,” said Marinoiu, as he walked though Napanee on Wednesday afternoon.
He went on to say that the United States government offers families with autistic children substantial support, something he hopes the Canadian government will adopt.
“I’m trying to do something for all those children in Canada who have autism, because they deserve the same happiness as the other children,” said Marinoiu of the illness that affects brain development in one in 1,000 children.
It’s been a hard walk for Marinoiu who’s kept on course, even during two blizzards.
“The snowstorm was really bad, but I kept walking, with the exception of a 10 minute drive by the OPP who said, ‘wow, you’re going to freeze to death.’
“And I’m very slow because I never did this before.”
The OPP picked up the walker on the 401, where it is illegal to walk – he’s now using Highway 2.
Marinoiu hoped to reach Kingston by Wednesday nightfall.
“I’m not a protester--I’m going to Ottawa in friendliness. I just want to find a solution for autism.”
The WHIG Standard
What makes a hero?; We're too quick to bestow the title on everyone. A hero is someone who's exceptional
Posted By Gerald Walton Paul
Posted 10 days ago
Recently, at a Sunday service at the Unitarian Fellowship, Rev. Kathy Sage had"Everyday Heroes and Heroines" as her sermon subject.
She put forward a good case for believing that all of us have the ability to perform super actions. To illustrate, she chose a drawing by a little girl as a first-rate example of heroic action. The little girl had painted a child's heart with numerous tiny hearts going out to the world. In a planet ravaged by hate and violence, this tiny hero showered the world with hearts of love.
While this girl's depiction of loving hearts moves me emotionally, I don't think she should be seen as a hero.
Ms. Sage is right in referring to the little girl, not as a "hero," but as an "everyday hero." A genuine hero is one who puts herself in harm's way for others and does it in a way that is far beyond the call of duty.
I think of the caregivers gathered for a coffee break to share their stories about looking after their spouse or another loved one through years of dealing with Alzheimer's disease. Every one of them is an everyday hero.
I summon up images of my mother during the Depression days, seeing that her eight children had enough to eat while she survived on meager leftovers. We should consider parents of children with autism, a peanut allergy, asthma and cancer everyday heroes. They give up their energy and time in the interest of the little ones.
Growing up with close ties to church and Sunday school, I looked up to those who I considered biblical heroes: Jonah the whale rider, Paul the shipwreck survivor, Eve the daring picker of forbidden fruit, Ruth the caregiver, Jesus the teacher of love.
Today, rather than using "hero" in a loose way, it's preferable to call these biblical figures "everyday heroes."
When we were kids, we used to play hero and villain. The villain would insist that the fair maiden pay the rent or else be evicted. The maiden would cry "I can't pay the rent." The villain would repeat his ultimatum. The maiden would echo her initial response. When the hero arrived and offered to pay the rent, the maiden, clasping her hands in adoration, would acclaim him as "my hero." Today, I see the so-called hero of this little drama as a generous fellow, not as a hero.
A hero may be described as one who displays extraordinary courage in the face of extraordinary danger. Whether male or female, heroes do the unexpected, undemanded. They often disobey orders by going beyond what doing one's duty requires. For their heroic actions, they are awarded by being honoured for their achievements and admired for their noble qualities.
When dead military personnel are repatriated, they receive a "hero's welcome." On arrival home, the overpass near Trenton is decked with crowds of people waving flags and banners signifying the great esteem in which these volunteers are held.
Lisa Prasuhn from AFA gets the message out :
Thanks for your message of support for Mr. Marinoiu, we are pleased
that you want to help out. The AFA was made aware of Mr. Marinoiu's journey earlier this week and we began networking with several agencies, groups, police, and media. Our member in Kingston, Pat LaLonde has arranged media coverage in her area. Strangers have picked this man up along the way, offering hot meals and a place to sleep. It is all happening so fast for everyone, it is hard to keep up. Pat has been in touch with the OPP and they have a good watch on him as they follow his movement. Senator Jim Munson has prepared a media release and will be waiting for him in Ottawa. The autism community
is so taken by this man, who left his home and went for a "walk" all on
his own, for his family, for his son, for all of us, so if you want to say a personal note, or you would be willing to assist with contacting media in Ottawa, please contact: marinoiu_lia@sympatico.ca
Thanks , Lisa Prasuhn
lisa.prasuhn@sympatico.ca
SEE ATTACHED PRESS RELEASE
And the facebook link
http://www.facebook.com/group.php/editgroup.php?members&gid=8363327485
Man walks to Ottawa
UPDATE from Pat LaLonde
Just got an update. Mr. Marinoiu left Elgin this morning, and is nearing his destination for this evening, Smith Falls . He was interviewed by the Smith Falls this Week!!!!!!
I want to send out a huge THANK YOU to the local media!!! You have done an amazing job letting the public know about Stefan's Walk. Mr. Marinoiu's family is very grateful for all of your support. What an incredible individual Stefan is to be walking from Toronto to Ottawa to raise awareness for Autism. As a parent, I can certainly understand his frustration!!!!!!
Thank you to the Marinoiu family and in particular Stefan Marinoiu for enduring the cold, wind, snow and rain to help some of the most vulnerable individuals in our society.
Mr. Marinoiu's daughter Lia has started a Facebook Group for her father's walk. I believe the groups title is My Father is Walking to Ottawa for Autism. There were approx. 400 members yesterday and it is nearing 800 today!!!! Well done Lia....... Here's wishing your dad a safe journey!!!!!!
Cheers,
Pat La Londe
Father makes trek to shed light on autism
http://www.intelligencer.ca/ArticleDisplay.aspx?e=889682
Posted By Sean Tomlinson
Posted 2 days ago
You can't really blame Stefan Marinoiu for wanting a shortcut to Ottawa , especially since he is walking there from Toronto .
When the Ontario Provincial Police picked him up near Oshawa he found out Highway 401 was the wrong choice.
"It's illegal to walk on the 401. I didn't know that," he said. "I thought it would be a better, straight, shorter way."
Marinoiu, 49, is making the 452-kilometre walk from Toronto to Ottawa to raise public awareness of autism.
His passion for autism is evident when he speaks and the sandwich board sign he wears which reads 'autism: time for a national solution' only reinforces that.
Marinoiu has a 15-year-old son who was diagnosed with autism when he was a child.
Marinoiu and his wife have struggled to provide proper support while their son's condition has deteriorated with age. He has now become aggressive, a common symptom in autistic children, and Marinoiu is afraid the Children's Aid Society may take him away, fearing he could hurt their younger six-year-old child.
"His autism has progressed to the point that communication is a struggle," Marinoiu said. "We just do not have the money to provide proper care for him."
Once in Ottawa , Marinoiu plans on going straight to Parliament Hill to speak with the federal government about increasing funding to support families like his who are dealing with autism. He also wants to urge the government to fund more research into autism.
"There are three types of governments: Governments that make things happen, governments that see things happen and the kind that asks what happened," he said. "We need to be the government that makes things happen."
Marinoiu, who has a plate in his left foot after breaking it two years ago, began his walk last Thursday morning from his home in Toronto . By Monday night he had walked the 171 kilometres to Trenton .
http://www.napaneeguide.com/ArticleDisplay.aspx?e=892780
Autism activist treks through Napanee
Posted By Micah Luxen
Posted 1 day ago
With a bright pink sign for autism, one man, Stefan Marinoiu, walks alone down the highway, making his way from Toronto to Ottawa in the cold.
He’s already walked six days at three kilometres an hour with an injured foot, but Marinoiu is going all the way to Ottawa for his 15-year-old, who has autism. The determined father says autistic children need much more support from the government.
“[The government] is telling me they have no resources for us but as autistic children get older, life gets more difficult, so we need more help, and I’m going to the federal government to ask them for it,” said Marinoiu, as he walked though Napanee on Wednesday afternoon.
He went on to say that the United States government offers families with autistic children substantial support, something he hopes the Canadian government will adopt.
“I’m trying to do something for all those children in Canada who have autism, because they deserve the same happiness as the other children,” said Marinoiu of the illness that affects brain development in one in 1,000 children.
It’s been a hard walk for Marinoiu who’s kept on course, even during two blizzards.
“The snowstorm was really bad, but I kept walking, with the exception of a 10 minute drive by the OPP who said, ‘wow, you’re going to freeze to death.’
“And I’m very slow because I never did this before.”
The OPP picked up the walker on the 401, where it is illegal to walk – he’s now using Highway 2.
Marinoiu hoped to reach Kingston by Wednesday nightfall.
“I’m not a protester--I’m going to Ottawa in friendliness. I just want to find a solution for autism.”
The Ottawa Citizen
Blizzards no match for man on 450K walk for autism
Jordana Huber
Canwest News Service
Sunday, February 10, 2008
TORONTO - The metal plate in his left foot is bothering him, and the blizzards Stefan Marinoiu has walked through have left him with frozen fingertips. But as he makes his way toward Ottawa to raise awareness about autism, the 49-year-old said the only thing on his mind is his 15-year-old son.
Unplanned, and out of exasperation, Marinoiu left his Toronto home Jan. 31 embarking on a 450 kilometre walk to "plead with the politicians" that it is time for a national autism strategy.
"Having an autistic child is like having a present and not being able to unwrap it," Marinoiu said. "I have been silent for 15 years. All the stress, all the pain, no resources, I said I gotta do something and I just walked out the door."
His pace has slowed since he left without telling his wife where he was going, and at times, he said blinding snow has left him unable to see the road.
The Ontario Provincial Police, who stopped him the first night for walking illegally on the highway, have kept an eye out for him, picking him up several times and driving him into the nearest community.
"They told me I was gonna freeze to death," he said. "It has been so cold you feel like you are going to die the next second but I take the next step. I am walking for all the tens of thousands who are like my son. No matter what, I am going to accomplish this."
Though he can't point to one event that triggered his march, he said his son Simon's needs have grown increasingly difficult to meet. Simon waited on a list for Applied Behaviour Analysis, an intensive treatment for autistic children but turned seven, the cut-off age, before reaching the top of the list, Marinoiu said.
"My son, he can't speak but I know he feels so much," Marinoiu said. " He needs help to be able to function and communicate. We have all the love to give him but we need more resources."
Without money or a cell phone, the part-time delivery man has relied on benevolent strangers for help along his trek. One night he slept in a homeless shelter, another in a church.
Locals have anonymously paid for hotel rooms while others have stopped along the highway to bring him food. His daughter's Facebook group, started after he called home from a borrowed phone, now has more than 1,400 members.
Marinoiu hoped to be in Ottawa Monday where Senator Jim Munson said he would be there to welcome him. Others from Ottawa with autistic children have also been organizing online to greet Marinoiu when he arrives.
© Canwest News Service 2008
Eileen Mountain, gets the word out :
I am not certain if any of you can help to spread the word about the desperate families who have someone in their family with a diagnosis of Autism but I have copied below, information from emails regarding a desperate father whose son has Autism and is walking to Ottawa , from Toronto, to gain attention for the diagnosis of Autism. Unless one is directly involved one could not fathom it's toll on society/ family / financially , and emotionally. 1 in 150 children are diagnosed with the disorder. Personally my family is affected . I am the grandmother of one child with the diagnosis.
Please forward this email to anyone who might be able to support bringing more support for those with Autism and its care for the family and their children.
Sincerely, and kind regards Eileen Mountain
AN UPDATE
I wanted to keep you updated. Below please find a portion of an email that I received from Lia, Stefan's Daughter. I am hopeful that Stefan receives the support that he so rightfully deserves and that the media and MP's will be in attendance when he arrives.
As for route, this is what we have decided.
My father is really exhausted, so we will be starting our route at 8:00 AM
from the Ottawa river Parkway and Carling Ave.
- We will then walk along the Ottawa River Parkway all the Way to Parliament
Hill (it becomes Wellington Avenue)
We estimate my father will arrive between 11:00 to 11:30 AM (hopefully
11:00) TODAY!!!!!
Lia
Stefan was in Smith Falls Friday night, Carleton Place Saturday night and then Kanata Sunday night. His knee is really bothering him, causing him a lot of pain. He broke his leg in 2005 and has a metal plate in it!!!!!! Which makes his walk/journey all that more incredible!!!!! What an amazing individual Stefan truly is!!!!!!!!!!!!
Cheers,
Pat
Reprinted with permission
Dear Lia,
I received a copy of your email below from my colleague Laurie Mawlam of the Autism Foundation about your father who is walking to Ottawa to raise awareness of the need for federal leadership in creating a National Autism Strategy. I understand that he has now arrived in Kingston and continues to make his way through the snow storm.
My name is Andrew Kavchak. I live in Ottawa and I am a parent of a child with autism. I would like to commend your father for his "walking to Ottawa" initiative and to thank him for his efforts to raise awareness of the need for the federal government to recognize the enormity of the needs and suffering of the autism community and the utter inadequacy of what the provinces are doing.
For your information, my son was diagnosed in December 2003 and beginning in 2004 I began to protest on Parliament Hill everyday during my lunch hour for a National Autism Strategy. I continued to protest throughout 2005 and stopped in April 2006 because of sheer exhaustion. Attached is a photo that was taken in the Spring of 2004. I organized and participated in several autism rallies on Parliament Hill and in front of Premier McGuinty's constituency office. I drafted a petition that was tabled in the House of Commons 89 times (the petition can be obtained from the home page of Families for Early Autism Treatment of BC - scroll down at: www.featbc.org) and met many politicians and journalists who were interested in the cause. We held several press conferences.
Whereas the word "autism" was never uttered on Parliament Hill in the past, the activity in recent years has heated up and a momentum has built up. Your father is contributing to it greatly already. Politicians like Peter Stoffer, Andy Scott, and Shawn Murphy have tabled Private Members' Bills and Motions in the House of Commons. While the Bills were defeated, the Motion of Andy Scott to create a National Autism Strategy was passed in December 2006. Regrettably, the government has done NOTHING to put it in place. However, one of our champions on the Hill, Senator Jim Munson, was successful in getting the Standing Senate Committee on Social Affairs to launch and inquiry into "funding for the treatment of autism". They held hearings and tabled a report with recommendations to the government, in March 2007. The government's response to the report was tabled in September 2007 and it largely ignored the problem. However, on the eve of a rally (November 21, 2006) that I organized with colleagues from FEAT of BC, to mark the second anniversary of the Supreme Court of Canada decision in the Auton case, the Health Minister Clement suddenly held a press conference and announced a new 5-point autism initiative. This was the first time the Minister had actually acknowledged a problem. Regrettably, his proposed action plan was truly disappointing (e.g. the creation of an information "website" and holding a "by-invitation only symposium").
It is clear that we need to get the momentum and ball rolling on the autism file. Your father is doing a lot to help. Senator Munson and Peter Stoffer, MP, have indicated a willingness to meet with you. These are our allies. Please contact them and try to speak with them about what can be done upon your father's arrival to help make it a success. Please issue a press release to the media about your father's coming to Ottawa and the purpose of his desperate walk. Please hold a press conference and rally on the Hill to try to get national media coverage. It needs to be done.
May God bless you and your family.
Andrew Kavchak
Senator Munson: (613) 947-2504; monsoj@sen.parl.gc.ca
Peter Stoffer MP: (613) 995-5822; stoffer.p@parl.gc.ca
PS - I also wish to share with you this comment from a fellow parent:
"What is it about this country that drives normal people to do abnormal and desperate things ... that can even endanger their health! Is walking hundred of miles across freezing, Winter terrain what it necessarily takes in Canada to get the attention of government? How awful ... just awful!
This father is quite courageous, obviously. But what is it that drives a dad to do something like this, in Canada? It's a terrible indictment of this nation's polity; in my view, and an ignoble symbol of our national shame!
Systemic autism policy neglect now leads us to this surreal spectacle of paternal desperation: a father marching hundreds of miles across a frozen, windswept landscape in Ontario, on his way to Ottawa to plead for medically necessary healthcare for his child. And this is actually happening in Canada!
What a miserable picture.
This very wealthy nation has degraded into a very bad place. It's no longer the Canada of our forefathers: unaccountable health policy technocrats are now firmly at the helm. "
United press international
Canadian braves blizzard for autism walk
Published: Feb. 10, 2008 at 11:03 PM
OTTAWA, Feb. 10 (UPI) -- A Canadian man is walking nearly 300 miles from Toronto to Ottawa in some of the winter's worst weather to draw attention to the need to help those with autism.
Stefan Marinoiu, 49, told Canwest News Service he left his home to begin the 281-mile trek Jan. 31 to "plead with the politicians" to do more for those with the affliction. Marinoiu, who has a 15-year-old son with autism, embarked without even telling his wife his plan and has battled blinding snows and frostbite.
"Having an autistic child is like having a present and not being able to unwrap it," Marinoiu said. "I have been silent for 15 years. All the stress, all the pain, no resources, I said I gotta do something and I just walked out the door."
Ontario Provincial Police stopped him the first night for walking illegally on the highway. Since then they've been keeping an eye out for him and sometimes advance him to the nearest town.
"They told me I was gonna freeze to death," he said. "It has been so cold you feel like you are going to die the next second but I take the next step. I am walking for all the tens of thousands who are like my son. No matter what, I am going to accomplish this."
He hopes to arrive in Ottawa Monday.
© United Press International. All Rights Reserved.
This material may not be reproduced, redistributed, or manipulated in any form.
***************
From a Listmate
Hi Folks,
Here's a report from the Hill: Just before 11am Stefan Marinoiu
arrived on the Hill with his daughter Lia (who took the train from
Toronto to catch up with him) and was met by Senator Jim Munson, and a
group of parents and media. Today must be the coldest day of the
winter so far in Ottawa. With the wind it feels like -35C or something
like it, and Mr. Marinoiu was shivering like a leaf as frost built up
on his moustache. He gave interviews to the media, as did the
supporting cast of parents who showed up. I spoke with the Ottawa Sun
reporter, and gave short interviews to the "A Channel" and CTV/CJOH
television reporters.
Mr. Marinoiu, his daughter and Senator Munson then left for a meeting
with Health Minister Tony Clement. Although there was a press scrum
and conference on the steps in front of Centre Block on his arrival,
there may be another press conference this afternoon. Well, I suspect
he was glad to finally get indoors.
Good luck Stefan!
Le Droit, 11 février 2008
Un père marche de Toronto à Ottawa pour son fils autiste
Dubé, Charles
Un Torontois qui a décidé de marcher jusqu'à Ottawa pour dénoncer le
peu de soutien qu'il reçoit des gouvernements pour s'occuper, avec sa
femme, de leur fils autiste de 15 ans, est arrivé à Kanata hier et
devrait se rendre au Parlement aujourd'hui.
Exaspéré, sans aucune préparation, Stefan Marinoiu a quitté Toronto
le 31 janvier sans avertir sa famille dans le but de sensibiliser la
population et les gouvernements à la situation de nombreuses familles qui
élèvent des enfants autistes.
Il a d'abord emprunté la 401 mais, le premier soir, quand la Police
provinciale de l'Ontario l'a averti qu'il n'avait pas le droit de
marcher sur cette autoroute, il s'est rabattu sur la 2, raconte sa fille Lia
dans un groupe Facebook qu'elle a créé pour appuyer son père et qui
comptait plus de 1600 membres hier. "Quand j'ai appris qu'il était parti,
je voulais qu'il arrête pour sa santé et sa sécurité mais, maintenant,
je suis fière de lui et je souhaite que sa marche serve à quelque
chose", a déclaré au Droit Lia Marinoiu, qui s'était rendue à Kanata pour
surprendre son père.
Elle et d'autres marcheurs l'accompagneront jusqu'au Parlement. Ils
devraient arriver vers 11 h. Le sénateur Jim Munson a promis
d'accueillir M. Marinoiu.
L'homme de 49 ans, qui marche malgré une blessure à la jambe, a
contacté sa famille pour la première fois le 2 février quand un étranger
lui a offert un endroit pour se reposer. Plus tard, d'autres bons
samaritains lui ont offert le gîte et le couvert
cdube@ledroit.com
February 11, 2008 THE LEADER-POST (REGINA) (FINAL) PAGE: A4 (NEWS)
Pleading with the politicians
Jordana Huber, Canwest News Service
TORONTO -- The metal plate in his left foot is bothering him, and the blizzards Stefan Marinoiu has walked through have left him with frozen fingertips.
But as he makes his way toward Ottawa to raise awareness about autism, the 49-year-old said the only thing on his mind is his 15-year-old son.
Unplanned, and out of exasperation, Marinoiu left his Toronto home Jan. 31 embarking on a 450-kilometre walk to "plead with the politicians" that it is time for a national autism strategy.
"Having an autistic child is like having a present and not being able to unwrap it," Marinoiu said.
"I have been silent for 15 years. All the stress, all the pain, no resources, I said I gotta do something and I just walked out the door."
His pace has slowed since he left without telling his wife where he was going, and at times, he said blinding snow has left him unable to see the road.
The Ontario Provincial Police, who stopped him the first night for walking illegally on the highway, have kept an eye out for him, picking him up several times and driving him into the nearest community.
"They told me I was gonna freeze to death," he said. "It has been so cold you feel like you are going to die the next second but I take the next step. I am walking for all the tens of thousands who are like my son. No matter what, I am going to accomplish this."
Though he can't point to one event that triggered his march, he said his son Simon's needs have grown increasingly difficult to meet.
Simon waited on a list for Applied Behaviour Analysis, an intensive treatment for autistic children but turned seven, the cut-off age, before reaching the top of the list, Marinoiu said.
"My son, he can't speak but I know he feels so much," Marinoiu said. " He needs help to be able to function and communicate. We have all the love to give him but we need more resources."
Without money or a cell phone, the part-time delivery man has relied on benevolent strangers for help along his trek. One night he slept in a homeless shelter, another in a church.
Locals have anonymously paid for hotel rooms while others have stopped along the highway to bring him food.
His daughter's Facebook group, started after he called home from a borrowed phone, now has more than 1,400 members.
Marinoiu hoped to be in Ottawa Monday where Senator Jim Munson said he would be there to welcome him.
Others from Ottawa with autistic children have also been organizing online to greet Marinoiu when he arrives.
February 11, 2008 THE WINDSOR STAR (FINAL) PAGE: B8 (NEWS)
Snow can't halt walk for autism
Canwest
The metal plate in his left foot is bothering him, and the blizzards Stefan Marinoiu has walked through have left him with frozen fingertips. But as he makes his way toward Ottawa to raise awareness about autism, the 49-year-old said the only thing on his mind is his 15-year-old son.
Unplanned, and out of exasperation, Marinoiu left his Toronto home Jan. 31 embarking on a 450 kilometre walk to "plead with the politicians" that it is time for a national autism strategy.
"Having an autistic child is like having a present and not being able to unwrap it," Marinoiu said. "I have been silent for 15 years. All the stress, all the pain, no resources, I said I gotta do something and I just walked out the door."
ILLUS: Colour Photo: Handout photo / LONG TREK: Stefan Marinoiu, father of a 15-year-old autistic son, pauses near Kingston last week on his way to Ottawa. ;
February 11, 2008 MONTREAL GAZETTE (FINAL) PAGE: A3 (NEWS)
Activist treks for autism
450 kilometres. Driven to help son, raise awareness
JORDANA HUBER, Canwest News Service
The metal plate in his left foot is bothering him, and the blizzards Stefan Marinoiu has walked through have left him with frozen fingertips. But as he makes his way toward Ottawa to raise awareness about autism, the 49-year-old said the only thing on his mind is his 15-year-old son.
Exasperated and with no plan, Marinoiu left his Toronto home Jan. 31, embarking on a 450-kilometre walk to "plead with the politicians" that it is time for a national autism strategy.
"Having an autistic child is like having a present and not being able to unwrap it," Marinoiu said. "I have been silent for 15 years. All the stress, all the pain, no resources, I said, 'I gotta do something,' and I just walked out the door."
His pace has slowed since he left without telling his wife where he was going. At times, he said, blinding snow has left him unable to see the road.
The Ontario Provincial Police, who stopped him the first night for walking illegally on the highway, have kept an eye out for him, picking him up several times and driving him into the nearest community.
"They told me I was going to freeze to death," he said. "It has been so cold, you feel like you are going to die the next second, but I take the next step. I am walking for all the tens of thousands who are like my son. No matter what, I am going to accomplish this."
Though he can't point to one event that triggered his march, he said his son Simon's needs have grown increasingly difficult to meet. Simon waited on a list for Applied Behaviour Analysis, an intensive treatment for autistic children but turned 7, the cutoff age, before reaching the top of the list, he said.
On Marinoiu's trek, locals have paid anonymously for hotel rooms while others have stopped along the road to bring him food. His daughter's Facebook group now has 1,400 members.
Marinoiu hopes to be in Ottawa today.
Hello Everyone,
It is currently 10:07 PM, we just got in about half an hour ago.
So, now the long message.
My father and I arrived on Parliament Hill at around 10:30 AM. Jamie
walked
with us a bit, and the Global National camera was the first to catch
us.
Senator Munson was there as promised to extend his greetings and
support.
Media cameras from A-Channel, CBC, Global National, and CTV/CJOH were
there.
As well as a reporter from the Ottawa Sun (we had a mini-photoshoot
with
their photoographer). We also did a CBC Radio Ottawa interview that
aired at
5:30 PM.
Myself, My father, and Lucie Filteau had a meeting with Mr. Clement at
12:00, most of us already know how that went (if you know what I mean).
We also had dinner with Mr. Mike Lake. He also gave us a mini-tour of Parliament. The library is wonderful.
Tomorrow morning there will be a press conference at 10:30 at
Parliament
(Unsure of exact location).
We also have one or two interviews lined up.
Does anyone have any ideas about my father's trip home. Not
transportation
wise, but Media wise? Should we contact them and let them know when he
arrives and such? What do you guys think?
I love you all sooooooo much. Thank you for everything that you've
done!
I will keep you all updated.
Please try not to call the cell-phone between 9:45 AM to 11:15 AM. It
would
be much appreciated.
<3 (<-- That's a heart sign if you look at it sideways!)
Lia Marinoiu
From Taline,
This was an incredibly busy day for the plaintiffs. We've been in dozens of interviews on and off camera with various media sources. AM640 News, CBC Newsworld, CBC French Radio, CTV, Star, Globe & Mail, Canadian Press, and CityNews to name a few.
Thanks to all the families who came out to support us at the hearing. You took time out from your busy daily lives and we truly appreciate this. A special thanks to NDP MPP Andrea Horwath and PC MPP Peter Shurman for attending. Your support means a great deal both to the families in the lawsuit and the entire autism community. Finally, thank you to Laura and Lillian for taking on the French interviews for us!
The morning started with arguments from our side. Our lawyer was questioned by the Judges pretty hard. Then when the government lawyer was up in the afternoon, he was questioned even harder. The court said they would not be releasing their decision until the summer.
Lastly, an update on Stefan Marinoiu. He made it to Ottawa and Senator Munson did indeed greet him. I understand he then met with the Federal Minister of Health, Tony Clement. There is a press conference scheduled for this morning on Parliament Hill at 10:30.
Taline
----------------------------------------------------------------------------------------------------------
NDP MPP Andrea Horwath Press Release:
February 11, 2008
ACTION ON AUTISM TREATMENT A MORAL IMPERATIVE, SAYS HORWATH
QUEEN’S PARK – Hamilton Centre MPP Andrea Horwath is pledging New Democrats will continue their political battle with the McGuinty government to ensure children with autism are no longer denied proper schooling or treatment in Ontario.
Joining the families of children with autism as a landmark court case began in Toronto today Horwath signalled that the pending legal decision won’t deter the NDP’s enduring commitment to seek justice for children with autism, who’ve been shut out of the public education system by controversial McGuinty government policies.
“It is unacceptable that these children have been and continue to be unable to obtain an education in this province because of their autism,” Horwath said.
“Despite all their promises, the McGuinty Liberals continue to fight families in court rather than deliver the specialized schooling to which every child is entitled and was supposed to receive regardless of age.”
Regardless of how the court rules, Horwath said Premier Dalton McGuinty still has “a moral imperative to do the right thing by children with autism and their families. New Democrats will continue to exert pressure in the Legislature to ensure the McGuinty government does the right thing.”
Horwath noted that many families struggle financially, sell or mortgage their homes and even go into debt to obtain the autism intervention programs the McGuinty government should be providing.
“What does it say about our province and its government when children with illness and disability are told there’s no place for them and their families are told they’re on their own? This callous and brutal approach must end.”
Under the McGuinty government, the waiting list for proven-effective treatment has grown by 1100 per cent to more than 980 children.
Horwath is the NDP Critic for Autism as well as Children and Youth Services.
-30-
Media contact: Sheila White 416-325-2777
------------------------------------------------------------------------------------------------------------
PC MPP Peter Shurman Press Release:
FOR IMMEDIATE RELEASE
FEBRUARY 11, 2008
Shurman critical of McGuinty government treatment of autistic children and their families
( Toronto ) – Thornhill Progressive Conservative MPP Peter Shurman stated that he believes the treatment by the McGuinty government of autistic children and their families is a “deplorable breach of trust”.
Shurman attended proceedings at the Ontario Court of Appeal, where a three-judge panel was asked to decide if a class-action lawsuit can go ahead on behalf of autistic children seeking treatment within the Ontario public school system. Shurman was present at the request of parents whose Liberal MPP had declined.
“Autistic children are entitled to an education, just like any other child in Ontario ,” said Shurman.
A March 2007 memorandum written by the Deputy Minister of Education entitled “Ministry of Education Response to the Report of the Reference Group on Autism Spectrum Disorders” stated that the focus of a Policy/Program Memorandum on the subject of Autism Spectrum Disorders would be the use of Applied Behavioural Analysis teaching practices and not Intensive Behavioural Intervention.
“Prior to the autumn 2007 election, the McGuinty government promised $10 million in funding to provide IBI treatment in schools,” stated Shurman, “By not allowing for Intensive Behavioural Intervention, or IBI, treatment within schools, the McGuinty government is forcing the parents of autistic children to choose between education and therapy.”
Currently, only two children in the province receive IBI therapy while attending public school full-time.
“This province needs a comprehensive strategy for education that addresses the unique needs of all Ontario children, including those with autism. What we don’t need is a government bent on denying access to the educational system to those who need it most,” said Shurman.
- 30 -
For more information:
Andrew Bowles
416-325-1415
-------------------------------------------------------------------------------------------------------------
Star
Scrap autism suit, lawyer says
Crown counsel argues `confusing' $1.2B claim against province rehashes families' old complaints
Feb 12, 2008
Tracey Tyler
LEGAL AFFAIRS REPORTER
A proposed $1.2 billion class-action lawsuit filed by parents of autistic children is a confusing grab bag of every gripe they've had against the province and their remaining pleas should be tossed out of court, a lawyer for Ontario's attorney general says.
"It feels as if the plaintiffs have taken every conceivable complaint ... they fed them into a blender, they pressed `puree' and out came a statement of claim," Crown counsel Robert Charney told a three-judge panel of the Ontario Court of Appeal yesterday
The families of six autistic children and their lawyers were in the province's highest court attempting to resurrect key portions of a lawsuit against the Ontario government and seven school boards that seeks redress for "the failures of autism services in Ontario."
The most "critical" issue for the families, their lawyer, David Baker, told the court yesterday, is whether they can establish a right to damages for breach of their Charter rights, which could allow them to recoup some of the cost of providing their children with therapy.
"My clients desperately wish to see their children in the public school system," Baker said. "They're saying `we have mortgaged our homes. We have sold our homes. We have emptied our RRSPs.'"
As many as 1,500 Ontario families could be affected, said Taline Sagharian, one of the plaintiffs, who estimates she and her husband, Harout, have spent at least $300,000 on a private education and treatment program for their son, Christopher, 11.
"He's responding positively," she said in an interview outside the courtroom yesterday.
Since programs known as effective in treating autism, such as "Intensive Behaviour Therapy," also called "Intensive Behaviour Intervention," generally aren't offered in Ontario's schools, parents say much of their time is taken up driving to treatment sessions, often in another community – taking their children out of the classroom and forcing them to choose between public education and therapy.
Last year, Superior Court Justice Maurice Cullity struck out claims by the families that alleged the defendants were negligent, deliberately misused their offices and violated the children's rights to security of the person. He allowed the case to proceed solely on the basis their equality rights have been violated.
But Charney told the panel headed by Justice Susan Lang this portion of the case should also be disposed of. The issues are moot because they were resolved by the appeal court in a similar case, known as the Wynberg decision in 2006, Charney argued.
The lawsuit should also be thrown out because it's so imprecisely worded that it's impossible to tell what the families want.
"Essentially, I see the claim here as very precise ... there is no IBI integration ... it's that you're doing zero," said Justice Paul Rouleau. "That's precise."
But Rouleau pressed Baker on why the province is legally required to do anything.
"I understand the difficulties these children are having," Rouleau said. "But I have to, as a judge, bring it back to legal terms."
While "operational decisions" are made by school boards, the province has a "residual" responsibility for special education programs and a duty to accommodate students with special needs and already does so by funding schools for the blind and deaf and special education programs for other students, sometimes past age 21, Baker said.
In the United States, all states offer autism therapy in the educational system, from age 3 up, he added.
The court reserved its decision.
-----------------------------------------------------------------------------------------------------------
-------------------------------------------------------------------------------------------------------------
Star
Bumpy start for plaintiffs at autism hearing
Feb 11, 2008
Tobi Cohen
THE CANADIAN PRESS
A $1.25-billion as-yet unapproved class-action lawsuit against seven school boards and the Ontario government over funding for specialized treatment for autistic children looks a lot like ``Swiss cheese," a lawyer representing the province said today.
"It's full of all kinds of holes," Robert Charney told a three-judge Ontario Court of Appeal panel during a daylong hearing.
Five families of autistic children are seeking the right to sue for damages should their class-action be certified. Charney argued the claim fails to specify exactly what sort of school-based programs the appellants want, and he suggested the plaintiffs are merely looking for cash to help pay for private school.
But while the judges didn't fully agree with Charney's suggestion the claim wasn't specific enough – even if they agreed it wasn't always clear – they wasted no time putting pressure on plaintiff David Baker, who wants the court to approve the potentially landmark lawsuit.
It's not exactly clear why the province should be considered legally responsible for the cost of the expensive, intensive therapy the families want for their children, Justice Paul Rouleau said.
"I understand the overall picture and I understand the difficulties these children are facing, but as a judge I have to bring it back to the legal claim," he said.
Baker argued the government has a duty to accommodate disabled students, but discriminates against those with autism, who can't always get both their therapy and education within the public school setting.
He suggested if the therapy can't be provided in regular schools, autistic kids could be accommodated at special schools like those for the blind and deaf.
Instead, he said, many parents have had to not only purchase their own specialized therapy, they've had to send their kids to private school to get it. So far just one family has been able to convince their children's school to allow a privately funded therapist into the classroom.
Anna Martini's sons Joshua, 10, and Noah, 9, were lucky to have a principal who recognized their needs, but it came at a cost.
"I've used up all my savings, used up RRSPs, put a tenant in my basement, borrowed money, remortgaged our house and I've had fundraisers every year," Martini said, noting she has fought for funding to help cover the $60,000 yearly cost per child for the specialized therapy her sons need.
"I'll keep doing it if that's what needs to be for their education."
The families are ultimately suing the province and school boards for negligence and damages for failing to provide and properly fund intensive behavioural intervention and applied behaviour analysis therapy.
Last March, Ontario Superior Court Justice Maurice Cullity sided with the provincial government in striking down several of the key claims, including negligence and damages.
But he let stand the discrimination claim, and in later dismissing the province's demand for $85,000 in legal costs, Cullity recognized the public importance of the issue, giving hope to the families that they might still have a case.
"In discrimination cases there is a provision for an award for damages that does not require proving that the government acted maliciously, and I hope the court will agree with that," Baker said outside the courtroom.
"The issue of damages is very important."
The panel has reserved its decision in the case.
Based on previous court rulings, the government wants the entire case tossed.
Education Minister Kathleen Wynne said last spring the province was working to roll out applied behaviour analysis in schools across Ontario, while intensive behavioural intervention would be used outside schools.
In the fall election campaign, the Liberals pledged $10 million for schools to deliver IBI therapy if re-elected, but the plaintiffs argue the McGuinty government has broken its promise.
An estimated 50,000 children and 150,000 adults in Canada have autism, which has been the subject of several legal battles across the country, most unsuccessful.
------------------------------------------------------------------------------------------------------------
Star
BATTLING FOR ADAM
Autism families' legal fight continues
`Make or break' moment in court challenge to allow therapists into classrooms to sit with autistic kids
Feb 11, 2008
Jim Wilkes
STAFF REPORTER
Mississauga mother Lynn Shane no longer wants to be forced to choose between her son's education and the vital therapy he needs for autism.
She and her husband are among a handful of families pursuing a class-action lawsuit against Queen's Park and seven school boards in an attempt to secure therapy in the classroom for their children.
The plaintiff families will be in the Ontario Court of Appeal today in what Shane describes as a "make or break" moment in their legal challenge.
The families suffered a setback last March when a Superior Court judge tossed out most of their claims without a trial.
Lawyers for the province and targeted boards are now seeking $85,000 in legal costs from the families, as well as dismissal of the rest of their claims. The families, who have asserted in court filings that they have spent life savings, remortgaged their homes and taken on extra jobs to pay for autism therapy, hope to restore the dismissed parts of their action.
The Shane family pulled 8-year-old Adam out of school after he completed Grade 2 last June.
His mother, 43, said they could no longer try to keep Adam's days free for school while fitting in 21 hours of Intensive Behaviour Intervention sessions each week for his neurological dysfunction. The government pays $40,000 a year toward the therapy.
"They're mutually exclusive, yet he needs them both," Lynn Shane said yesterday at their Mississauga home. "It was confusing for him to be out of school while he was in therapy and he'd miss so many parts of projects in school. It was heartbreaking for all of us."
She said teachers aren't trained on the implications of autism, which can include limited social skills, communication problems and repetitive behaviours.
Shane calls her son "an incredibly bright little fella" who memorized the ages and birthdays of all the adults at his school, something his teacher thought was a nice trait.
"He is very smart, but that's a skill he doesn't need to have," she said.
She and her husband, David, want to have a therapist sit with Adam in the classroom, to help him digest what is being taught.
In the meantime, she is home-schooling Adam while taking him to Burlington for therapy four days a week.
Education ministry spokesperson Patricia McNeil said the education ministry has no policy on allowing therapists into classrooms, saying school boards make that decision.
The Peel District School Board, among the boards named in the suit, forbids any parent or agency from paying for in-class help for students, including autistic therapists, said spokesperson Brian Woodland.
"No matter what the role, the concerns are there, because you have a child on a completely different program from anyone else, but you have a teacher employed to deliver that curriculum," Woodland said.
With files from Torstar News Service
DATE CHANGE
Thursday: FEB 14th, 2008 Autism Show
The heartbreak ...and hope of autism. Jason "J-Mac" McElwain inspired the world with his incredible shot-making at a high school basketball game. Larry talks to the teen and others about the disorder. Holly Robinson Peete, Doug Flutie and Toni Braxton join the discussion to bust myths and present breakthroughs. It's an uplifting hour with those who know!
Good Morning,
Stefan Marinoiu battled wind, frigid weather, snow and blistered feet on his way to Ottawa, however these elements were no match for his determination. Stefan walked up the steps of Parliament Hill yesterday morning at approx 11am to be greeted by Sen. Munson. He has been interviewed by a number of news outlets and is scheduled for a press conference today at Parliament Hill. He also had a meeting with Health Minister Tony Clement. According to Stefan, Mr. Clement passed the buck to the provinces!!!!! However, Stefan is still determined to continue to advocate for Autism services.
Stefan was featured on a number of news casts yesterday and there are a number of articles in the print media today, including the Belleville Intelligencer, Ottawa Sun and the Citizen. Please keep an eye out for additional media coverage throughout the day.
Thanks Stefan, you are a true inspiration.
Cheers,
Pat La Londe
http://www.parl.gc.ca/information/library/PRBpubs/prb0622-e.htm
The document above was prepared by the Library of Parliament and
clearly
demonstrates why we need a National Autism Strategy.
The discrepancy between the provinces and lack of uniformity or
National standards makes the need for a National Autism Strategy all the more pressing.
Andrew Kavchak
Ottawa
Devoted dad gets meeting with health minister
Posted By Aedan Helmer
Feb 12, 2008 The Intelligencer ( Belleville ONT)
When Stefan Marinoiu walked out the front door of his Scarborough home nearly two weeks ago, bound for Parliament Hill, he wasnt expecting face time with a federal cabinet minister.
But after an arduous 450-km trek on foot through bitter cold, the 49-year-old autism activist was invited inside Health Minister Tony Clements chambers for a one-on-one meeting.
Marinoiu, whose 15-year-old son Simon is autistic, said the protest is a personal cause, but its also for all the parents of autistic children.
After waiting several years for behavioural therapy, the Marinoiu family was told Simon was too old for treatment when he finally reached the top of the waiting list.
Marinoiu wrote letters and received polite responses, but no action from government officials, while his son's condition worsened.
His story is becoming all too common, said Liberal Senator Jim Munson, who greeted Marinoiu as he arrived on the steps of Parliament Hill.
"From my perspective, we're in a crisis," said Munson. "Governments have a moral and ethical obligation to pay attention."
A recent Senate report indicated one in 166 Canadians - approximately 48,000 children aged 0-19, and 144,000 adults - are being diagnosed with autism.
After meeting with Clement, Marinoiu said the minister passed the buck to the provinces.
"I'm a little bit discouraged, but this is just one battle," said Marinoiu. "You lose one battle but you cannot lose the war
COURT OF APPEAL: PARENTS' CLASS ACTION
Autism suit off target, Ontario lawyer argues
He calls it a mess that was 'fed into a blender to purée'
KIRK MAKIN
JUSTICE REPORTER
February 12, 2008
A class action lawsuit launched by parents of autistic children is ill conceived, moot and off target, an Ontario government lawyer said yesterday in the province's latest defence of its approach to the debilitating syndrome.
Lawyer Robert Charney told the Ontario Court of Appeal that the class action can best be described as a 280-paragraph mess that was "fed into a blender to purée."
However, a lawyer for the plaintiffs, David Baker, dismissed Mr. Charney's approach as being typical of a government whose stingy attitude has forced families with autistic children to sell their homes and flee to more generous jurisdictions - such as Alberta, B.C. and even the United States.
"This treatment has been available all over the U.S. for at least 15 years," Mr. Baker told reporters afterward. "It's unconscionable that it is not available here as well. In Ontario, you have to choose between education and therapy."
Launched in 2004, the lawsuit seeks approximately $1.25-billion in damages for up to 1,500 Ontario families who have spent heavily to gain intensive treatment - known as ABA (applied behaviour analysis) or IBI (intensive behavioural intervention).
They argue that the school system must fulfill its statutory duty to provide children with a proper education, whether that means supplying an IBI specialist for each autistic student, training teachers in IBI or providing special schools.
Many of the most active plaintiffs packed the courtroom yesterday. One of them, Lynn Shane, told reporters that she had to remove her eight-year-old son, Adam, from school last September. She said that he takes 21 hours of IBI treatment each week and the constant coming and going had become too disruptive for him.
"We would love him to still be in school," Ms. Shane said. "Adam is at a level where he would benefit hugely from being integrated."
Mr. Baker told the court that each school or school board takes a piecemeal approach that shares one assumption in common: "It is based on a stereotypical assumption that autistic kids receiving IBI don't need an education. But autistic kids have the same need for an education as any other kids."
Both sides are appealing a 2007 Ontario Superior Court judge's decision to strike out many crucial aspects of the statement of claim that forms the basis of the class action.
In that ruling, Mr. Justice Maurice Cullity criticized the lawsuit for being "a maze" that "bombarded all targets." He said that the plaintiffs have no viable action for negligence and misfeasance.
While Judge Cullity left intact a claim that Ontario has breached the Charter of Rights equality provision, he said that the plaintiffs cannot collect damages even if they succeed.
Mr. Charney argued yesterday to eliminate the equality grounds from the lawsuit as well, effectively destroying the suit in its entirety.
The class action is the third major attack on government policies in the past decade. The previous two went down to defeat after initial victories.
In a case known as Auton, the Supreme Court of Canada ultimately ruled against a group of B.C. parents who challenged the exclusion of intensive autism treatment from the province's health insurance.
In the other case, a lawsuit launched by a group of Ontario families - known as the Wynberg-Deskin group - was rejected by the Ontario Court of Appeal.
Mr. Charney argued strenuously yesterday that the previous Auton and Wynberg-Deskin rulings cut all the ground out from under Mr. Baker's class action.
However, Mr. Baker argued that, unlike the previous cases, his class action is distinct and deserves to move onward toward a trial because it attacks educational policies. Instead of targeting health policies, it alleges discriminatory behaviour by a school system that has not made serious attempts to accommodate autistic children.
February 11, 2008
ACTION ON AUTISM TREATMENT A MORAL IMPERATIVE, SAYS HORWATH
QUEEN’S PARK – Hamilton Centre MPP Andrea Horwath is pledging New Democrats will continue their political battle with the McGuinty government to ensure children with autism are no longer denied proper schooling or treatment in Ontario.
Joining the families of children with autism as a landmark court case began in Toronto today Horwath signalled that the pending legal decision won’t deter the NDP’s enduring commitment to seek justice for children with autism, who’ve been shut out of the public education system by controversial McGuinty government policies.
“It is unacceptable that these children have been and continue to be unable to obtain an education in this province because of their autism,” Horwath said.
“Despite all their promises, the McGuinty Liberals continue to fight families in court rather than deliver the specialized schooling to which every child is entitled and was supposed to receive regardless of age.”
Regardless of how the court rules, Horwath said Premier Dalton McGuinty still has “a moral imperative to do the right thing by children with autism and their families. New Democrats will continue to exert pressure in the Legislature to ensure the McGuinty government does the right thing.”
Horwath noted that many families struggle financially, sell or mortgage their homes and even go into debt to obtain the autism intervention programs the McGuinty government should be providing.
“What does it say about our province and its government when children with illness and disability are told there’s no place for them and their families are told they’re on their own? This callous and brutal approach must end.”
Under the McGuinty government, the waiting list for proven-effective treatment has grown by 1100 per cent to more than 980 children.
Horwath is the NDP Critic for Autism as well as Children and Youth Services.
-30-
Media contact: Sheila White 416-325-2777
------------------------------------------------------------
FeatBC Discussion Board: Room Three: Discussions about Government
Topics
------------------------------------------------------------
Posted by Andrew Kavchak (Kavchak) on Tuesday, February 12, 2008 -
11:04
am:
Hi Folks,
The Ottawa television "A Channel" station broadcasted a report on Mr.
Marinoiu's arrival on Parliament Hill yesterday and posted the video
on their website at:
http://www.achannel.ca/ottawa/news_53543.aspx
Palm donates smart phones to autistic people
By: Rafael Ruffolo
ComputerWorld Canada (05 Feb 2008)
Toronto's Geneva Centre for Autism is hoping a recent donation of Palm
T|X
smart phones will help give those suffering with the neurological
disorder
greater independence in both their personal and business lives.
Palm Canada Inc. announced Thursday the donation of 100 new T|X handheld
devices to the centre as part of their e-Learning pilot program - an
initiative aimed at helping teens and young adults with suffer from the
spectrum disorder. The Geneva Centre said the smartphones are a perfect
fit
for the program's participants as they promote visual-learning and
communication in autistic individuals.
"In a compact, user-friendly way, this allows them to keep track of
their
schedules and manage their own life without worrying," Margaret Whelan,
executive director of the Geneva Centre for Autism, said.
The simple fact of knowing that something has a beginning and an end,
Whelan
said, is extremely important to relieving the anxiety and stress people
with
the disorder face on a daily basis.
"If you are going to school and you know you are going to be working on
a
math project from 10:30 to 11:45, although you may not enjoy it, you at
least know when it's going end," Whelan said. "But without any visual
cues
or reminders to how long the class is, those with Autism start to have
real
anxiety as to when it will end. Can you imagine if you showed up at work
and
no one ever indicated to you when you were going to be allowed to
leave?"
From ComputerWorld CanadaEmbattled Palm brings Treo 750 to Canada
For Palm, the program is an extension of similar initiatives the company
has
undertaken with other neurological disorders, such as amnesia. Jordan
Silverberg, enterprise sales manager at Palm Canada, said the
organizational
tools in the device - including touch screen, agenda, and address book -
lends itself well to replacing paper-based visual cues and reminders.
"The feedback we've gotten so far have been very positive," Silverberg
said.
"It's easy-to-use and they love the electronic cues and prompts on the
device. It's a huge assistance that works to replace paper cue cards,
organize the individual's life and give them a sense of independence."
But despite the effect the phones might have on an Autistic individual's
personal life, Whelan said, the devices will have an impact on their
working
lives as well.
"For people on the spectrum in the business world, we know there are
natural
challenges to successful employment," Whelan said. "One is following
daily
routines, which we know addresses, and the other is learning how to fill
their leisure time during lunch and coffee breaks. The fact that these
devices allow games or music to be loaded onto them gives individuals
something to do to fill out their spare time and no longer leaves them
the
odd man out."
In addition to that, she said, the anxiety provoking situations of
having to
go to a big meeting or appointment can also be alleviated with the
device.
"If they need to help calm themselves down to get to the job at hand,
having
a loaded program that reminds them what they need to do in a particular
situation will stop them from being nervous," Whelan said. "In using the
device will, they will not attract attention to themselves. This allows
them
to quietly use it to and get control of their lives again."
But maybe one of the most important aspects of all, according to Whelan,
is
the overall boost to one's self-esteem the devices can provide.
"It's not very cool to be carrying around big bulky paper reminders and
visual schedules, so there's a very strong cool factor associated with
these
Palms," she said.
Article on cbc.com Feb 11th:
http://www.cbc.ca/news/background/autism/
Shows summary of funding coverage by province at the bottom of it.
Crown counsel argues `confusing' $1.2B claim against province rehashes families' old complaints
Feb 12, 2008 04:30 AM
Tracey Tyler
LEGAL AFFAIRS REPORTER
A proposed $1.2 billion class-action lawsuit filed by parents of autistic children is a confusing grab bag of every gripe they've had against the province and their remaining pleas should be tossed out of court, a lawyer for Ontario's attorney general says.
"It feels as if the plaintiffs have taken every conceivable complaint ... they fed them into a blender, they pressed `puree' and out came a statement of claim," Crown counsel Robert Charney told a three-judge panel of the Ontario Court of Appeal yesterday
The families of six autistic children and their lawyers were in the province's highest court attempting to resurrect key portions of a lawsuit against the Ontario government and seven school boards that seeks redress for "the failures of autism services in Ontario."
The most "critical" issue for the families, their lawyer, David Baker, told the court yesterday, is whether they can establish a right to damages for breach of their Charter rights, which could allow them to recoup some of the cost of providing their children with therapy.
"My clients desperately wish to see their children in the public school system," Baker said. "They're saying `we have mortgaged our homes. We have sold our homes. We have emptied our RRSPs.'"
As many as 1,500 Ontario families could be affected, said Taline Sagharian, one of the plaintiffs, who estimates she and her husband, Harout, have spent at least $300,000 on a private education and treatment program for their son, Christopher, 11.
"He's responding positively," she said in an interview outside the courtroom yesterday.
Since programs known as effective in treating autism, such as "Intensive Behaviour Therapy," also called "Intensive Behaviour Intervention," generally aren't offered in Ontario's schools, parents say much of their time is taken up driving to treatment sessions, often in another community – taking their children out of the classroom and forcing them to choose between public education and therapy.
Last year, Superior Court Justice Maurice Cullity struck out claims by the families that alleged the defendants were negligent, deliberately misused their offices and violated the children's rights to security of the person. He allowed the case to proceed solely on the basis their equality rights have been violated.
But Charney told the panel headed by Justice Susan Lang this portion of the case should also be disposed of. The issues are moot because they were resolved by the appeal court in a similar case, known as the Wynberg decision in 2006, Charney argued.
The lawsuit should also be thrown out because it's so imprecisely worded that it's impossible to tell what the families want.
"Essentially, I see the claim here as very precise ... there is no IBI integration ... it's that you're doing zero," said Justice Paul Rouleau. "That's precise."
But Rouleau pressed Baker on why the province is legally required to do anything.
"I understand the difficulties these children are having," Rouleau said. "But I have to, as a judge, bring it back to legal terms."
While "operational decisions" are made by school boards, the province has a "residual" responsibility for special education programs and a duty to accommodate students with special needs and already does so by funding schools for the blind and deaf and special education programs for other students, sometimes past age 21, Baker said.
In the United States, all states offer autism therapy in the educational system, from age 3 up, he added.
The court reserved its decision.
Ontario Political News - Clip 7 (limit 500) Feb 11 2008 14:12:00 - Source: POL [The Canadian Press]
Autism Lawsuit
TORONTO - Lawyers behind a class-action lawsuit against the
**>Ontario<** government over funding for specialized treatment for autistic children are getting a rough ride from the province's highest court.
A three-judge **>Ontario<** Court of Appeal panel is wasting little time putting pressure on David Baker, who wants the court to approve the $1.25-billion class action.
Justice Paul Rouleau says he's not clear why the province should be considered legally responsible for the cost of the expensive, intensive therapy the families want for their kids.
Baker says the government has a duty to accommodate disabled students, but discriminates against those with autism, who can't get both their therapy and education in public school.
He says if the therapy can't be provided in school, autistic kids could be accommodated at special schools like those for the blind and deaf.
The plaintiffs are hoping to persuade court that they should be allowed to sue for damages if their class action is eventually certified.
(The Canadian Press)
Parents of autistic kids fight for right to sue Ontario
Want their children to receive expensive, specialized therapies in schools
Last Updated: Monday, February 11, 2008 | 8:25 AM ET
The Canadian Press
Parents fighting to have their autistic children receive specialized therapies within the public education system go before Ontario's highest court on Monday in an emotionally fraught case that has huge financial stakes for the families and taxpayers.
Five families are trying to sue the Ontario government and seven school boards for negligence and damages, accusing them of failing to provide or properly fund the expensive therapies in schools.
In a one-day hearing Monday, described as a "make or break" day by one parent involved, they will try to persuade the Ontario Court of Appeal that they should be allowed to sue for damages if the class action they have filed is eventually certified.
Known as intensive behavioural intervention and applied behaviour analysis, the therapies for the poorly understood neurological condition that causes developmental disability and behaviour problems can cost between $30,000 to $80,000 a year for each child.
"Families go to extremes," said Taline Sagharian, of Richmond Hill, Ont., whose 11-year-old son Christopher is autistic.
"Six years ago, we had to sell our house. We've cashed in our investments and any assets that we have … and we continue to go through financial problems."
In 2004, the families filed a $1.25-billion lawsuit, which has yet to be certified as a class action, arguing their children were victims of discrimination because other kids with special needs receive both therapy and their education within the publicly funded school system.
Last March, Ontario Superior Court Justice Maurice Cullity sided with the provincial government in striking down several of the key claims, including negligence and damages.
However, he let stand the discrimination claim and by later dismissing the province's demand for $85,000 in legal costs, Cullity recognized the public importance of the issue and gave hope to the families that they might still have a case.
The government, based on previous court rulings, wants the entire case tossed.
Toronto lawyer David Baker, who is acting for the families, calls it unconscionable that parents are faced with what they view as a stark choice between therapy and education for their kids.
"In our education system, there is no other group receiving therapy — whether it's in a hospital, in residential treatment, any form of treatment you can name — who is deprived of an education,"
Baker said.
Some Ontario families have moved to Alberta or B.C. where autistic children can receive both, he said, while autistic children in the United States are able to access the therapies through the education system until the age of 21.
Government promised $10 million
Education Minister Kathleen Wynne said last spring the province was working to roll out applied behaviour analysis in schools across Ontario while intensive behavioural intervention, or IBI, would be used outside of schools.
In the election campaign in the fall, the Liberal party pledged $10 million for schools to deliver IBI therapy if re-elected, but the plaintiffs argue the McGuinty government has broken its promise.
An estimated 50,000 children and 150,000 adults in Canada have autism, which has been the subject of several legal battles across the country, most unsuccessful.
In the interim, the financial struggles continue for Ontario families with autistic children.
"I find it extremely difficult to watch the other kids on our street hop on the school bus in the morning and go to school while my son has to stay home," Sagharian said.
"It's difficult enough to raise a child with autism without having to fight for his basic rights."
© The Canadian Press, 2008
In Depth
Autism
Making sense of a confusing world
February 11, 2008
A child sits flapping his arms wildly in the air; another expresses his frustration by pushing aside a teacher's aide, a third retreats into playing computer games instead of playing with friends.
All three are showing signs of autism, a common neurological disorder. Autism rates have been rising steadily — even dramatically — in Canada. An estimated 190,000 Canadian children have the disorder. The most recent epidemiological studies suggest that the rate of autism has increased from 40 cases per 100,000 to 60 cases.
Autism was first described in the early 1940s by two doctors who were working independently of each other. Leo Kanner and Hans Asperger identified a set of symptoms they found among the children they were studying. Both used the word autism — from the Greek word for self — to describe the children they treated who seemed enclosed in their own solitary worlds.
Kanner was a child psychologist at Johns Hopkins Hospital in Baltimore; Asperger — whose work was published a year after Kanner's — was a pediatrician in Vienna.
Since Asperger, unlike Kanner, included people who had average to high IQs in his definition, the scientific community has reserved "Asperger syndrome" to describe prodigies and certain high functioning people with autistic disorder. Bill Gates, founder of Microsoft and the world's richest man, is thought by many to have the characteristics of Asperger syndrome. He has often been seen rocking and tends to speak in monotones — both habits acknowledged to be symptoms of Asperger.
Seventy per cent of people with other forms of autistic disorders suffer from mild to severe mental retardation.
What is autism?
The term is used in two ways:
• To refer specifically to Autistic Disorder (classic autism).
• To refer to five Autism Spectrum Disorders described under the diagnostic category of Pervasive Developmental Disorders (PDD) that appear in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) of the American Psychiatric Association.
Autism Spectrum Disorder is a neurological condition that causes developmental disability. It affects the way the brain functions and results in difficulties with communication and social interaction. People with the disorder also exhibit unusual patterns of behaviour, activities and interests.
People with ASDs could share certain behavioural, social and communication characteristics, but they can vary widely in the effect it has on their day-to-day lives. Some people can function well, others are locked in a world of their own. At its most severe, people with autism can exhibit extremely repetitive and unusual behaviours like self-injury and aggression.
If untreated, the symptoms can be very persistent and difficult to change. But in its mildest forms, autism is more like a personality difference linked to difficulties in understanding social conventions.
What are some of the symptoms of ASDs?
There is no single symptom that would lead to a diagnosis of autism. But someone who shows a number of the following characteristics and behaviours would likely be diagnosed with an ASD:
• Shows no interest in other people.
• May be interested in people, but does not know how to talk, play with, or relate to them.
• Initiating and maintaining a conversation is usually difficult.
• Speech and language skills may begin to develop and then be lost, or they may develop very slowly, or they may never develop.
• Difficulty interpreting non-verbal communication such as social distance cues, or the use of gestures and facial cues, like smiles, that most of us take for granted.
• Repeated ritualistic actions such as spinning, rocking, staring, finger flapping, and hitting self.
• Restricted interests and seemingly odd habits, like focusing obsessively on only one thing, idea, or activity.
• Sensory input may be scrambled and overwhelming.
As well, people with ASDs may have secondary problems such as:
• Neurological disorders including epilepsy.
• Gastro-intestinal problems.
• Fine and gross motor deficits.
• Anxiety and depression.
Children with ASDs develop motor, language, cognitive and social skills at different rates from other children their age. For instance, they may be very good at solving math problems but have great difficulty making friends or talking.
How are ASDs diagnosed?
There is no single test that will confirm that someone has an ASD. A diagnosis is based on the number and pattern of typical characteristics and on the observation of specific behaviours and disabilities.
Someone with a mild case could go undiagnosed for years and may only be detected when the person goes through a crisis that brings them in contact with professionals who are able to recognize the disorder.
What causes ASDs?
Nobody's certain. It's generally accepted that autism is a neurological disorder. Research is focusing on genetics, differences in brain function, environmental factors, viral infections and immune responses and deficiencies.
In 2001, a Wired magazine article coined the term "Geek Syndrome" after researchers in California (particularly Silicon Valley) noticed a three-fold surge over 10 years in the number of reported cases of autism.
Researchers have found children with autistic disorders are more common among the offspring of parents in particular careers. In the mid-1990s, clinical psychologist Simon Baron-Cohen compared the professional backgrounds of parents and grandparents of almost 1,000 children with autism to groups of parents of children with Tourette syndrome, Down syndrome and other language delays, and to a control group of parents chosen randomly. His findings showed that the fathers and grandfathers of autistic children were twice as likely to be engineers as the parents of children who were not autistic.
A study published in the journal Nature Genetics on Feb. 18, 2007, pinpointed a new region of DNA thought to cause at least some cases of autism in children. The work involved abnormalities in chromosomes, gene codes and proteins. Between seven and 12 per cent of the families showed individuals sharing possibly detrimental chromosome abnormalities. A linkage analysis that searched for regions of the genome that might be shared by individuals with autism spectrum disorder turned up a region on chromosome 11 that was not previously linked to the risk of developing autism.
How is autism treated?
Some people with mild forms of autism may never need treatment. They can function well and may even excel. However, those with severe forms of the disorder are unable to function and may benefit from active therapy.
There are several ways people with autism are treated and there is plenty of debate over what kinds of treatments offer the most success. Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) are designed to actively engage children with communication, socialization, learning and behavioural problems.
ABA can be extremely expensive as it involves one-on-one teaching for up to 40 hours per week. Costs range from $30,000 to $80,000 a year, according to Autism Society Canada. IBI is also an intensive program that can involve either one-on-one therapy or sessions with small groups.
Other types of therapy can combine elements of physiotherapy, counselling, development of motor and language skills, diet and medication.
Provincial medical plans offer varying levels of coverage for autism therapy. Some will also cover all or part of the cost of intensive ABA and IBI programs.
• Alberta pays up to $60,000 a year per child up to age 18 for ABA/IBA programs.
• Ontario covers ABA/IBI programs for qualifying children under the age of six — older children are also eligible if an assessment determines they need more treatment.
• British Columbia pays up to $20,000 annually for treatment for children up to age six. It pays $6,000 annually for treatment of children six years of age and older.
• Nova Scotia pays for an Early Intensive Behaviour Intervention Program. Direct EIBI is provided over the first six months for 15 hours a week, and is gradually reduced over the following six months (10 hours per week for three months and then five to six hours a week for the remaining three months). The number of children selected for the program depends on the resources available through local District Health Authorities.
• P.E.I. covers IBI programs for up to $200 per week.
• In New Brunswick, the government will pay for intervention services for a child diagnosed with Autism Spectrum Disorder until the beginning of the school year in the year they turn five.
• Manitoba pays up to $6,000 a year for preschoolers for up to 36 hours of ABA treatment a week, with five hours of that treatment provided by the family.
• Newfoundland and Labrador will pay up to $40,000 a year per child under the age of six for 30 hours a week of ABA/IBI treatment for two years.
• Saskatchewan offers up to 10 hours of therapy under its Autism Early Childhood Therapy Program. In 2006, six children were covered.
• Quebec's Autism Action Plan offers 20 hours a week of ABA/IBI therapy for children between the ages of two and five.
• The Yukon government pays for ABA/IBI treatment for children up to the age of 19, with no yearly maximum.
• The Northwest Territories pays for ABA/IBI treatment for pre-school and school-aged children.
• Nunavut has no specific program for children with autism.
Source for funding details: Library of Parliament
Autism Treatment Services of Canada
Autism Society of Canada
National Alliance for Autism Research
Geneva Centre for Autism
Autism and School-based Programming (personal page)
(Note: CBC does not endorse and is not responsible for the content of external sites - links will open in new window)
Some Autism Spectrum Disorders
Autistic disorder: This is also known as classic autism. It affects ability to communicate with and relate to other people. Some people with autistic disorder can speak and interact while some who are more severely affected are completely non-verbal.
Asperger syndrome: People with Asperger syndrome do not have a delay in speech development, but may have a range of deficits in social development. They often also have obsessive, repetitive behaviours and preoccupations such as rocking or hand waving.
Childhood Disintegrative Disorder (CDD): CDD is also known as regressive autism. Children with CDD usually develop normally for two to four years before they begin to lose language, social skills and interest in their environment.
Source: National Alliance for Autism Research
Living with Autism: "Losing My Little Boy"
A Sweet, Bubbly Boy
From the time he was born, Ryan was the most social of the Kalkowskis' three children. "He was full of big smiles and would let anyone hold him," recalls Nicole. "As a toddler, when he heard a group of adults laughing about something, he'd let out a big chuckle the second everyone was quiet. He pretended to understand what we were talking about so he could be part of the group."
Beyond being "a ham," as Nicole affectionately puts it, Ryan was on track developmentally. He waved, blew kisses, and by 14 months, he was putting two words together, such as "hold you." Leading the typical toddler life, Ryan had weekly playdates and was toted around to the mall, to his sisters' activities, and to their school. "The school was also our church, so we were there a lot and Ryan was well-known," she says. "Everyone was excited to see him."
His biggest admirers, however, were at home. His sisters adored their bedtime routine with Ryan, who would grab his blankie and head to each of the girls' rooms to say goodnight. "He gave them a big hug and blew kisses," says Tim, who owns a contracting business. "Sometimes he crawled into their beds to cuddle. The girls couldn't get enough."
Find this article at: http://www.redbookmag.com/home/living-with-autism-0208-2
Ask Lindsay Moir:
"Floating through the system": school unsure of child's level of functioning
Friday, February 08, 2008
Question:
My son has a Language Learning Disability and is formally identified as Communication. We are having an incredibly difficult time getting hard data on his academic levels from the school. According to his IEP his program is modified "and is not based on the Grade 5 curriculum." When we ask for hard data we are told that "he is being exposed to the Grade 5 curriculum but is marked differently." His report card is 60% across the board and the comments deal positively with his effort and behaviour.
Our private speech person says that programs for students like our son are "mostly accommodated, and rarely modified". Our son's total program is MODIFIED. Our son is a bright boy, but seems to be floating through the system. He gets EA support but there seems to be no consistent plan to direct the EA — she kind of "makes it up as she goes along."
When we met with the principal she told us that they can't put any details in the IEP about what the "program" is based on because it is "fluid" and reacts to any gaps that appear in his learning . . .
Needless to say we are very frustrated and sense that our son is not getting a good education.
What is this all about? Where do we go from here?
Answer:
It is impossible to do good programming without a good BASELINE. If the school cannot tell you your child's level of functioning, then how did they decide what needs to be taught? There should be a full academic assessment done immediately. Take the Learning Outcomes from the Ministry of Education website for Grade 3, Grade 4, Grade 5 for each of the core subject areas and sit down with his teachers and candidly look at each outcome in relation to your son. He likely will have mastered some outcomes for every subject in every grade — but needs to be taught the ones that he did not learn — this is what his EA should be systematically working on in her time with him. It is called "AN INDIVIDUAL EDUCATION PROGRAM" The school should regularly re-assess to find both skills acquired, and those that need more study. "Exposure" is not enough to ensure learning.
Your speech person is right! Most LD students have accommodation (different ways to learn the age and grade appropriate work). Modification (work at a different grade level) is usually a temporary "catch up" strategy for newly diagnosed LD students. Sometimes "modification" is a matter of "dumbing down" the work so that support is NOT required. This is definitely easier for the school, than providing accommodation and support so that he can function at grade level.
Remember that all decisions must be based on what is BEST FOR THE CHILD, not what is EASIER FOR THE SCHOOL.
You did not allude to any technology, but LD students as a group, benefit from a wide range of technology — from audio books to voice-to-print software, from text-to-voice technology to hand-held digital recorders. If technology would work for him, there is a grant (Special Equipment Amount) which covers the majority of the cost of such equipment. Money should not be the issue, if you have the appropriate documentation.
Every IEP is "fluid" — that is why the Ministry set-up IEPs to be "a living document that can be revisited at any time". The position of the Principal is simplly unacceptable.
In Special Education Transformation, the Ministry is clear that IEPs need to be strengthened and report cards need to be revised for Special Education students. It was a common complaint of parents across the province that hard data was hard to find and measureable IEPs were rare. Changes to both IEP requirements and the Report Card are underway.
By definition, Learning Disabled students have average to above-average intelligence, but have a condition that interferes with their learning. If we can accommodate (or compensate for) their learning disability, then they should be able to function at, or above, grade level! That is why "dumbing down" your son's program is not acceptable!
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.
`Make or break' moment in court challenge to allow therapists into classrooms to sit with autistic kids
Feb 11, 2008 04:30 AM
Jim Wilkes
STAFF REPORTER
Mississauga mother Lynn Shane no longer wants to be forced to choose between her son's education and the vital therapy he needs for autism.
She and her husband are among a handful of families pursuing a class-action lawsuit against Queen's Park and seven school boards in an attempt to secure therapy in the classroom for their children.
The plaintiff families will be in the Ontario Court of Appeal today in what Shane describes as a "make or break" moment in their legal challenge.
The families suffered a setback last March when a Superior Court judge tossed out most of their claims without a trial.
Lawyers for the province and targeted boards are now seeking $85,000 in legal costs from the families, as well as dismissal of the rest of their claims. The families, who have asserted in court filings that they have spent life savings, remortgaged their homes and taken on extra jobs to pay for autism therapy, hope to restore the dismissed parts of their action.
The Shane family pulled 8-year-old Adam out of school after he completed Grade 2 last June.
His mother, 43, said they could no longer try to keep Adam's days free for school while fitting in 21 hours of Intensive Behaviour Intervention sessions each week for his neurological dysfunction. The government pays $40,000 a year toward the therapy.
"They're mutually exclusive, yet he needs them both," Lynn Shane said yesterday at their Mississauga home. "It was confusing for him to be out of school while he was in therapy and he'd miss so many parts of projects in school. It was heartbreaking for all of us."
She said teachers aren't trained on the implications of autism, which can include limited social skills, communication problems and repetitive behaviours.
Shane calls her son "an incredibly bright little fella" who memorized the ages and birthdays of all the adults at his school, something his teacher thought was a nice trait.
"He is very smart, but that's a skill he doesn't need to have," she said.
She and her husband, David, want to have a therapist sit with Adam in the classroom, to help him digest what is being taught.
In the meantime, she is home-schooling Adam while taking him to Burlington for therapy four days a week.
Education ministry spokesperson Patricia McNeil said the education ministry has no policy on allowing therapists into classrooms, saying school boards make that decision.
The Peel District School Board, among the boards named in the suit, forbids any parent or agency from paying for in-class help for students, including autistic therapists, said spokesperson Brian Woodland.
"No matter what the role, the concerns are there, because you have a child on a completely different program from anyone else, but you have a teacher employed to deliver that curriculum," Woodland said.
With files from Torstar News Service
Rainbow Country Snowmobile Association
Volunteer President & General Manager: Dennis Lendrum
182 Syroid St Espanola, ON P5E 1G4
705-869-0164 Cell 705-869-9135 email: dennis@rcsasnow.com
Secretary Treasurer: Betty Heis
R.R. 1, Site 12, Comp 11, Mindemoya, ON P0P 1S0
Phone/Fax: 705-377-5158 email: betty@rcsasnow.com
Visit our Website at www.rcsasnow.com
I am very pleased that the 5 clubs within RCSA have agreed to name the new long weekend in February as “Autism Awareness Ride Weekend”
We will be offering a guided snowmobile tour to anybody that wants to participate. “Bring your cameras”
The ride will start Saturday February 16th, 2008 (9am) at the Pinewood Motor Inn (705) 869-3460 in Espanola Ontario.
We will ride through the LaCloche Mountains to Manitoulin Island for lunch, and then we will ride to Killarney for dinner and a night of relaxation at the Killarney Bay Inn. (705) 287-2011
Sunday we will ride to some of the fantastic sightings in the Killarney area and back to the Killarney Bay Inn for dinner and a night of relaxation.
Monday February 18th, 2008 we will leave the Killarney Bay Inn at (9am) and ride back to Espanola (Pinewood Motor Inn) for 1 pm.
Book your rooms early, as the motels will fill up fast.
Please confirm your intent, as I need to make lunch reservations.
Yours in Safe Snowmobiling Always
There is nothing Stronger than the Heart of a Volunteer
Dennis Lendrum
End of mailing
Subscribe to:
Posts (Atom)