Autism News Articles
By
Alliance for families with autism
July 28th – August 8th , 2008
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www.autismnewsarticles.blogspot.com
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********
REVISED MEDIA RELEASE:
For Immediate Release
Autism Coffee Chat – Sudbury Ontario
Welcomes Jonathan Howard And Terry Robinson(Two-Time Para-Olympian)
FOR
Run The Dream – www.runthedream.ca
On Wednesday August 13th 2008 at 12:00 noon Sudbury based Autism Support Group- Autism Coffee Chat ( www.autismcoffeechat.blogspot.com ) is proud to host Jonathan Howard and his Run the Dream Team for Autism. Families along with invited members from the Tom Davies Square , City Council, Terry Robinson(two-time para-olympian), Special Olympics Ontario Sudbury Chapter - and our very special guest speaker 9 yr old Matteo Raso - as well as Aboriginal Singer Angela Recollet will gather in the courtyard at Tom Davies Square to welcome Jonathan and his Team to our fine city. There will be a chance to meet Jonathan and Terry as well as speeches.
Dream As Though You’ve Never Failed
Run The Dream is a coast-to-coast solo run across Canada by Jonathan Howard, a 25 year old resident of Mississauga, Ontario to raise awareness about Autism Spectrum Disorders (ASD) and a targeted $2.5 million, in support of charities that work to assist children with ASD and their families. Jonathan started his run in St. John’s, Newfoundland on March 25, 2008 and will finish in Victoria, British Columbia in December 2008. In this time span, Jonathan will run approximately 8,500 kilometres, and visit more than 650 communities in 10 provinces.
Jonathan is proud to dedicate his run, and his efforts to raising awareness and charitable donations to support the people who dedicate their lives turning the dreams of children with ASD, and their families, into miracles and abilities.
Contact us for more information or explore our web site and return regularly to learn more about ASD; the people and organizations behind Run The Dream; to learn when Jonathan will be in or near your community; keep updated on Jonathan’s progress and the activities that are happening on-the-road; learn about occasional special offers from our sponsors; and to donate to the cause. Our site will be updated frequently – please return often.
The website www.runthedream.ca
has a charitable registration number.
For official donor information, your contact is:
Alison Pickard – General Manager, Beneficiary, Sponsor and Donor Relations
1-888-507-5885 ext. 3
alison.pickard@runthedream.ca
All ARE WELCOME to join Jonathan, and Terry. We have invited athletes from Sudbury Chapter of Special Olympics to run a leg with Terry, and runners from Sudbury Rocks running club to run also.
Participation in the run event is by open donation/silver collection collected at the start and end of the run.
We are hoping a few dignitaries will join us. All media sources invited.
Trish Kitching
ktchmeifucan2002@yahoo.ca
675-5021
From Warren Howard, Run the Dream:
Sault Ste. Marie Chapter of Autism Ontario
Welcomes jonathan’s run the dream team:
Saturday August 23 starting at noon in Bellevue Park Sault Ste Marie.
It is a family event sponsored by the local Autism Ontario Chapter to welcome Jonathan and Terry to SS Marie. Full details later in the weekend.
http://www.canada.com/windsorstar/story.html?id=8788a368-c891-4e4a-bfb9-e8e0eb4e8422&k=6580
Windsor author explains autism to kids
Sharon Hill, The Windsor Star
Published: Thursday, August 07, 2008
Debbie Lockrey-Wessel wrote the book she wished she could have read as a child.
It could have helped her and others better understand her younger brother John Lockrey, who has autism.
"I know there was times when he ate his lunch by himself in the library. He didn't have a lot of friends. He didn't have kids his age interact with him as much and I just wish that he had."
Windsor author Debbie Lockrey-Wessel poses for a portrait at The Windsor Star studio. Lockrey-Wessel has written a children's book on autism and has another book coming out in 2009.
Pawel Dwulit, The Windsor Star
Now the Windsor woman hopes her first children's book, A new friend at school, will help students today understand autism. With her brother's permission, the main character is John.
"I thought that this book would be a way to help other students, other young students understand what autism is about and not be afraid to interact with other children with autism."
The book explains autism is a developmental disorder, not a disease you can catch. It talks about how some children with autism may not make eye contact or talk but can communicate by pointing to pictures.
In Ontario, an estimated 70,000 people have what falls under a broad category of autism spectrum disorder.
While some people with autism don't develop language skills and can have repeated movements, such as hand flapping, others, such as those with Asperger's disorder, show no significant delay in language and have average to above average intelligence.
Lockrey-Wessel, a national science communication advisor for Agriculture and Agri-Food Canada, shares her interest in autism with her husband Dwayne Wessel. He's an educational consultant for students with autism in Michigan and appeared on ABC TV's Extreme Makeover as a consultant a few years ago.
Lockrey-Wessel said she got the idea for six books on autism while flying to Calgary a few years ago. Her next book is due out in 2009.
"I was on a plane ride one day and ideas for six different books on autism flew out onto a piece of paper."
Lockrey-Wessel has sold 1,800 books so far mostly to schools across Canada. One school in British Columbia had already re-ordered more books since their first copy was so worn.
She said the book can be used to teach children about a classmate that has autism and it carries a general message of being nice to other children. "There's ways of cheering on our friends regardless of their disabilities."
Lockrey-Wessel hopes to also write children's novels.
Her brother John, now 31, liked the book. She said he has an amazing memory, keeps up on politics, lives in Sarnia with is parents and has two part-time jobs.
Debbie Lockrey-Wessel will be signing and selling her children's book on autism at Chapters at Devonshire Mall Aug. 28 from 5:30 p.m. to 9 p.m. The book sells for $9.95 and is available at www.essentialautism.com.
http://www.thespec.com/News/Local/article/415133
Google Alert
Deficit hurts autism program
August 08, 2008
Denise Davy
THE HAMILTON SPECTATOR
(Aug 8, 2008)
The region's only program for autistic children has been forced to shut its doors to new clients because it faces a deficit of almost $2 million.
The Hamilton Niagara Regional Early Autism Initiative, one of nine programs in the province, has informed parents on the wait list that it can no longer take new clients.
A spokesperson for McMaster Children's Hospital, the lead agency for the program, said demand has outpaced funding and the program faces a $1.8 million deficit.
Although funding increased from $7 million in 2006 to almost $9 million this year from the Ministry of Children and Youth Services, the number of children enrolled in the program grew from 62 to 116.
The local program is one of eight across the province that have reported deficits. Only the Toronto initiative isn't facing a shortfall.
Child Care Resources in northern Ontario was hit especially hard and expects a deficit of $2.5 million by the end of the year.
Minister of Children and Youth Services Deb Matthews appointed a team to investigate Child Care Resources. Ministry spokesperson Kevin Spafford said findings from the investigation may affect what the ministry does to help all agencies.
Locally, McMaster is investigating ways to allow more clients to be accepted.
"We aren't accepting new admissions to the program until an appropriate model of care is developed to address the funding challenges," said Melissa MacDonald, adding that the program is not shutting down.
Children in the Intensive Behavioural Intervention program (IBI) receive 20 to 40 hours of therapy a week, usually one-on-one with a specialized therapist. Parents typically report that their child's symptoms are greatly reduced as a result.
A Hamilton mother said she was shocked to receive a letter from Hamilton Health Sciences last week stating her five-year-old son would not be starting in the fall.
She said she's waited two years so far.
"Our hopes were really up that he would start in the fall," said Angela, who did not want her last name used. "He's a pretty high-functioning child and the sooner he gets in, the better."
Angela said the letter stated that the hospital is working with the ministry to find a solution.
MacDonald said program directors are exploring other models, including the Toronto model in which the children work in group settings rather than one-on-one.
Ministry funding for IBI therapy across the province increased from $44 million in 2003 to $150 million this year, Spafford said.
ddavy@thespec.com
905-526-3317
IBI in Hamilton
* Children on the list for Intensive Behavioural Intervention (IBI) therapy through the Hamilton program typically wait 18 to 24 months for treatment.
* The average age of children receiving IBI therapy is five.
Google alert
http://www.canada.com/topics/news/national/story.html?id=5fef3a88-196a-40c7-b37f-036f84784947
Ontario's autism treatment faces huge cash crunch
Jordana Huber , Canwest News Service
Published: Thursday, August 07, 2008
TORONTO - The number of autistic children receiving treatment in Ontario is nearly equal to the number still languishing on waiting lists, NDP critic Peter Kormos charged Thursday as he accused the province of failing to live up to its promises to fund treatment for autistic children.
Autistic children who have waited years to reach the top of waiting lists are being denied Intensive Behavioural Intervention (IBI) because of funding shortfalls, Kormos said noting the crucial treatment is most effective when introduced at an early age.
"Families lived with hope but are now living with despair," Kormos said. "There is a 50 per cent chance of getting treatment. It is a roll of the dice."
A file photo of Aron and David Collyer in Victoria, BC. Aron, who is autistic, is going through an Applied Behaviour Analysis program.
Nic Hume/Vancouver Sun
A letter sent last month to parents of autistic children waiting for IBI in the Hamilton-Niagara Regional Autism Intervention Program warned new entries were being delayed because "service needs have exceeded the current level of funding."
Children already in the program, the letter said, may have changes to their clinical team or schedules. Kormos said other agencies across the province are also restricting the number of children receiving IBI therapy because they are facing deficits.
Stacy Hayward's four-year-old son Branden reached number three on a waiting list and was scheduled to begin 25 hours of IBI per week in September before she was told the program was delaying new entries.
Though she can't afford private treatment which can cost anywhere from $40,000 to $60,000 a year, she said she can't afford to wait for the province to fund her son's therapy.
"It is a ticking time bomb," Hayward said. "The stats show IBI treatment is most effective when started before the age of five. Branden is going to be five in December."
Hayward joined Kormos and parent Melanie Cooper at Queen's Park Thursday to press the province for more funding.
Kormos said 1,400 children currently receive IBI treatment while 1,100 are still waiting.
After spending two years on a wait list, Cooper's son five-year-old Reece started IBI 10 weeks ago.
"He actually looked at me and said 'I love you,'" Cooper said choking back tears. "That has never happened before so it is very important and I am worried with the cutbacks they already have they're going to take it away."
The province has acknowledged some agencies providing services for autistic children are facing cash crunches and earlier this month the Ministry of Children and Youth Services launched a review into the operations of one not-for-profit in northern Ontario facing a $2.5 million funding deficit this year.
Kevin Spafford, a spokesman for Minister of Children and Youth Services Deb Matthews, said the review is due back in the coming days and the results will help "inform" the ministry as it works with other agencies facing similar predicaments.
"We understand they are facing some financial pressure, that they are forecasting some deficits for this year and we are absolutely committed to working with them to ensure kids with autism get the service that they need," Spafford said.
© Canwest News Service 2008
Nancy’s List
For those that have not seen this, and were planning on paying for their summer inclusion worker for their child to attend camp for this month, this is on the top of the Autism Ontario webpage:
Note: This program is now closed as the maximum number of families have been served. Thank you for your interest in the program.
I would suggest that everyone send in your paperwork anyway - or if this means you have to withdraw your child from camp, let them know how your child has been excluded from camp because of this. Let them see what the needs really are. It is unfair that because a child's camp experience was not in the first few weeks of the summer, that you cannot get their inclusion worker covered under this program. Remember, this is a Ministry of Children and Youth Services initiative, not an Autism Ontario initiative. Autism Ontario are just the messengers here.
Ministry of Children and Youth Services (MCYS)
Deb Matthews, Minister of Children and Youth Services
14th Flr
56 Wellesley Street West
Toronto, Ontario M5S 2S3
tel: 416-212-7432
fax: 416-212-7431
dmatthews.mpp.co@liberal.ola.org
Please cc your letters to the Official Opposition Critics:
MPP Julia Munro, PC Critic Children and Youth Services
julia.munroco@pc.ola.org
MPP Andrea Horwath, NDP Critic Children and Youth Servicesw
ahorwath-qp@ndp.on.ca
--------------------------
from the Bradford Times Newspaper:
Running the Dream for Autism research, at Lions Park
Posted By Miriam King
Families of children with Autism, as well as MPP Julia Munro, MP Peter Van Loan, Bradford West Gwillimbury Mayor Doug White and Deputy Mayor Dennis Roughley joined Jonathan Howard and Terry Robinson, in Bradford Aug. 2.
On August 2nd, families of kids with Autism, their friends and neighbours, and representatives of every level of government, were on hand to welcome Jonathan Howard and Terry Robinson to Bradford.
Howard, who turned 25 on July 30th, is running across Canada to build awareness of Autism Spectrum Disorders, and encourage governments to take a closer look at the patchwork of access to treatment and support that exists for families of Autistic children. Run the Dream started in St. John’s Newfoundland in March, and has now reached the 3,500 km. mark – and will end December 31, when Howard reaches the Pacific Ocean in British Columbia.
Along the way, he is also hoping to raise $2.5 million for Autism research into the treatment and causes of a neurological condition that now affects an estimated 1 in 150 children in North America. The goal: To “turn children’s dreams into abilities”, and help children with Autism reach their full potential.
In Ontario, he has been joined on his run by Terry Robinson, wheelchair athlete and former Paralympian, who won Bronze in Korea in 1988, and participated in the Barcelona Paralympics in 1992.
“As a person with a disability, I understand how important it is to have the support and the treatment… to reach their goals, to do whatever they choose to do,” said Robinson, who worked with Howard for the Ontario government, and will wheel alongside Howard as far as Winnipeg. “When he told me a year ago that he was doing this, it took me about 30 seconds to say, I’ve got to be part of that.”
Helping to organize the Bradford stop and fundraising Barbecue at the Lions Park was Nancy Morrison, whose 9 year old son Sean, a student at Fieldcrest Elementary, has Autism. “Being a family touched by autism can be challenging,” Morrison said, comparing it to a marathon. “Jonathan is aware of the marathon we run every day… Thank you from the bottom of our hearts.”
Among those present to welcome the Run the Dream were MP for York-Simcoe, the Hon. Peter Van Loan, Provincial representative Julia Munro, Bradford West Gwillimbury Mayor Doug White, and former Warden of Simcoe County Dennis Roughley – who expressed congratulations, support, and thanks for the effort.
But the last word went to Luke Burrows, a 12 year old boy from Toronto who has Autism Spectrum Disorder, and who couldn’t speak until he was 5 years old. Luke told the crowd that he had followed Run the Dream on Facebook.
“I wanted to meet him so badly because what he is doing is so great. To me, he is a hero,” he said. “Too many kids like me don’t learn how to talk, or learn the things they need to live on their own” - thanking Howard and Robinson for their efforts, to “help kids like me to reach our dreams.”
“It was my own dream to run across Canada,” Howard said, a dream that expanded to include making a difference in the lives of children with Autism. “There needs to be more support, more research, more education, a national strategy.”
On August 2nd, Run the Dream left Newmarket around 7 a.m., continuing north on Yonge St. to Innisfil, then returning to Bradford for the welcome and BBQ, sponsored by Innisfil Sobeys, Bradford M & M Meat Shops, One Red Chair coffeehouse and the BWG Recreation Department, around noon. Back on the road, Howard and Robinson made their way through Innisfil to Kempenfest in Barrie, where they were joined by MP Patrick Brown, and completed the day’s marathon run.
For more information, or to support Run the Dream, see www.runthedream.ca
-----------
From the Bradford Topic Newspaper:
Cross-Canada runner stops in Bradford
Sandra Bolan
Published on Aug 06, 2008
Jonathan Howard (second from right) and Terry Robinson (front) were welcomed to Bradford by (from left) Nancy Morrison, York-Simcoe MPP Julia Munro, MP Peter Van Loan and Bradford West Gwillimbury Mayor Doug White.
First, there was Terry Fox’s Marathon of Hope, which was one man’s attempt to run across Canada to raise awareness and money for cancer research.
Five years later, Rick Hansen took his Man in Motion tour around the world and through Canada to raise money and awareness for spinal cord research.
Now, Jonathan Howard, 25, is running across Canada to raise money and awareness for autism spectrum disorder.
However, unlike Mr. Fox or Mr. Hansen, Mr. Howard, who is from Mississauga, has no personal connection to the condition he’s rallying against.
“When I saw the numbers 10 years ago and I saw them now and the fragmentation, I knew more had to be done,” Mr. Howard said Saturday during his stop in Bradford.
Mr. Howard is hoping his Run the Dream campaign will raise $2.5 million, which translates to less than 10 cents per Canadian, by the end of his 8,500-km trek.
“I know I’m going to do it,” Mr. Howard said of both reaching his financial goal and completing the run.
He runs about 42 km each day, six days a week.
“When I decided to take action, it was a very quiet dinner table; the jaws dropped,” Mr. Howard said of the day he told his family he would run across Canada to raise money for autism.
“These kids have dreams too. They need a certain level of service and support and to have the opportunity to achieve their dreams,” he said.
So on March 25, Mr. Howard began Run the Dream in St. John’s, Newfoundland.
While people now line the streets to greet Mr. Howard when he runs through towns, Run the Dream had a lonely start.
He might have been alone on the road, but he had many people following his progress over the Internet, particularly Luke Burrows, 12, from Toronto, who suffers from autism.
“I wanted to meet him so badly because what he is doing is so great,” Luke said.
The two finally met in Toronto last month
“If more people know about autism through Run the Dream, then maybe I can achieve my dreams,” Luke told the crowd on hand to welcome Mr. Howard to Bradford West Gwillimbury. “Kids with autism are people, too.”
Luke wasn’t the only person inspired by Mr. Howard.
On July 7, while in Ottawa, Mr. Howard gained a travelling partner in two-time paralympian Terry Robinson, who plans on wheeling it to Winnipeg alongside Mr. Howard before returning home.
“As a person with a disability, I understand how important it is to have the services available,” Mr. Robinson said.
When Mr. Howard and Mr. Robinson came into Bradford last weekend, they were greeted by numerous local families who have children with autism.
“Our children are growing up and they are going to need services when they are adults,” Nancy Morrison said.
Ms Morrison’s son, Sean, 9, is autistic.
Autism spectrum disorder is a neurological disorder that affects approximately one out of every 165 children younger than three in Canada, according to the Autism Society of Canada.
The disorder is four times more common in boys than girls and affects the functionality of the brain, resulting in communication and social development impairments.
The Government of Ontario currently supports families with autistic children until those children reach the age of six; after that, parents are on their own.
York-Simcoe MP Peter Van Loan, MPP Julia Munro and Bradford West Gwillimbury Mayor Doug White were also on hand to greet Mr. Howard last weekend.
For more on Mr. Howard’s mission, visitwww.runthedream.ca.
---------------------------
From the Vancouver Sun:
Families of autistic children don't need a fancy new centre
--------------------
From the Vancouver Sun Newspaper:
Letter
Wednesday, August 06, 2008
Daniel Weeks, chair of Simon Fraser University's psychology department, thinks Premier Gordon Campbell's brainchild of spending $20 million on a new building is "an incredibly exciting development" that will make B.C. a leader in autism services (Aug. 1). He clearly doesn't have a clue about the challenges facing B.C. families of children with autism.
How will a new building help families who can't find therapists willing to work in Fort St John because they can make more money in Vancouver?
Will it help adults with IQs over 70 who are now ineligible for government support, no matter how desperate their need?
How will a building help the majority of B.C. families who can't afford the astronomical fees charged by autism experts?
Will it help my child and the 55,000 other school-age children who fight over the scraps of assistance offered by a provincial special education system ravaged by budget cuts?
What families need is more funding support so they can tap into existing services and expertise. A fancy new building at SFU or anywhere else is a waste of tax dollars that will do nothing to help our kids.
Dawn Steele
http://www.citynews.ca/news/news_25528.aspx
Google alert
Critics Claim Province Has Betrayed Autistic Kids With Funding Cuts
Thursday August 7, 2008
CityNews.ca Staff
Stacey Hayward claims the province has betrayed her son and thousands of other children by pulling the funding of a specialized treatment for autism.
Hayward's son Branden was supposed to start his intensive behavioural intervention sessions on Monday but the family's hopes were dashed when they received a letter from the government last week informing them the boy wouldn't be eligible for the program due to cutbacks.
"When we opened up the letter, to our dismay it actually stated that any new entries to the I.B.I. program were now being put on hold due to lack of funding," the frustrated mother explained.
Branden was third on the list to receive the one-on-one treatment. (For more information on I.B.I. treatment, follow the link at the bottom of the story)
NDP MPP Peter Kormos joined Hayward and Melanie Cooper, whose five-year-old son Reese currently receives the therapy, at a press conference at Queen's Park Thursday.
"These children need our help. The government, no if, ands or buts, the government's failing these children," he said.
Critics claim the government isn't fulfilling its promise to provide funding for I.B.I. treatments, which can cost families tens of thousands of dollars a year. Now agencies across Ontario may have to turn children away.
Hayward says she'll be forced to turn to private therapy which could cost between $40,000 and $60,000 a year.
"We can't afford not to have him in a program," she said. "So the bills and that we'll have to worry about later."
Cooper's son started the treatments in April and she says she's already noticed a significant improvement in her child.
"I'm worried with the cutbacks that they already have that they're going to take [the treatment] away," she said.
About 1,400 children currently receive I.B.I. treatment, but another 1,100 are still waiting.
Related Stories:
What Is Autism?
CityNews Exclusive - A Mother Reveals What Having An Autistic Child Does To A Family (May 13, 2008)
• For more information on I.B.I. therapy, click here.
Nancy’s List
Last Saturday was an amazing day of events for Jonathan Howard and Run the Dream in my home area of Southern Simcoe County. Many came out to the Bradford event that I had put together, it was great to see all levels of government come out, our MP, MPP, Mayor and Deputy Mayor. Articles will be printed later this week in our local papers, they are weekly newspapers. I will share them as they come out.
Later in the afternoon, Jonathan and Terry carried on up into Barrie and attended the Autism Ontario booth at Kempenfest. This article was printed in the Barrie Advance Newspaper:
Stopping autism - one stride at a time
Leigh Blenkhorn photo
Jonathan Howard (left) is running across Canada to raise awareness about autism. Howard was joined by Barrie MP Patrick Brown and others as he made his way into Barrie on Saturday.
August 05, 2008
Jonathan Howard made a stop in Barrie Saturday on his marathon across Canada to raise awareness about autism.
Howard was accompanied by two-time Paralympian Terry Robinson, Barrie MP Patrick Brown and others as he made his way to the Autism Ontario booth at Kempenfest where he was greeted with applause.
“I’m almost at 3,500 km, almost at the halfway point,” he said. “I’m excited to be here in Barrie.”
Howard is running coast-to-coast raising awareness and, hopefully, $2.5 million for charities that work with autistic children and their families along the way.
“Running across Canada was always a dream of mine, and I knew that I wanted to do it for a cause that needs attention,” he said.
“ASD (Autism Spectrum Disorder) affects one in 165 children born. People need to know that. There needs to be more support services and there has to be more research and education in the public about it.”
Howard started his run in St. John’s, Nfld, in March and will finish when he reaches Victoria B.C. in December.
He said the trip has been going well so far, but he’s been busy.
“Not only am I doing six marathon distances a week, I am doing one to two fundraisers a week. But the word’s getting out there.”
For more on Howard and his run, click the link provided
------------------
The Vancouver Sun:
Autism centre one step closer
Couple asked to put together proposal for long-held vision
Catherine Rolfsen
Vancouver Sun
Friday, August 01, 2008
VANCOUVER - A power couple is crafting a pitch to the provincial government for an autism centre to help families such as theirs that are dealing with the disorder.
Sergio Cocchia and Wendy Lisogar-Cocchia - who own Vancouver's Century Plaza Hotel and Spa, and have a 13-year-old son with autism - envision an autism research and support centre that could cost up to $34 million to build.
"What we hope is that, when you get this diagnosis, there's a place that you can go, where you could access all of the material, the professionals, the treatment plans, and you could prepare yourself for the challenge that's ahead of you," said Sergio Cocchia.
For years, the Cocchias have been speaking with Premier Gordon Campbell about the possibility of a centre.
Their dream started to materialize in the 2008 throne speech, when the province committed to developing a facility to "provide a residential environment for children with autism and create a national hub for research and a centre for parental supports."
After the speech, Campbell told The Vancouver Sun he asked the Cocchias to put together a proposal and a business plan.
Minister of Children and Family Development Tom Christensen said Thursday the government has "talked notionally about a commitment of up to $20 million but we really don't know yet what it will take."
Christensen said the Cocchias have been asked to consult with autism experts and families about what the centre should look like.
Last week, the Cocchias invited experts and stakeholders to have their say. Cocchia said a website is also planned to allow everyone to weigh in. He said early consultation suggests the centre might be most useful in a location outside Metro Vancouver.
Preliminary estimates peg the cost of building the centre at $34 million, Cocchia said, meaning "aggressive fundraising" will be needed.
Not everyone is keen on the Cocchias' vision. Some stakeholders said that if government money is available, it should go toward programs and services rather than a building.
But Daniel Weeks, chair of Simon Fraser University's department of psychology, called the proposed centre "an incredibly exciting development."
"If this all works out as I understand it will, I think B.C. will be clearly a national if not international leader in autism services, autism research, autism intervention," he said.
Weeks said the facility could help attract a "world-class" candidate to fill the newly formed position of national chair in autism research and intervention at SFU.
Clair Schuman, executive director of Autism Community Training, said a preliminary consultation with her advisory council and other members of the autism community suggested the idea of a centre "had promise."
But University of B.C. autism expert Pat Mirenda questioned why there was no consultation with the autism community before the couple was asked to develop the proposal.
And although she believes the Cocchias are well-intentioned, she's not convinced a centre is what's needed.
"If we have $20 million, why would we spend it on a building and not just increase services or training?" she asked.
Moms on the Move, a network for families coping with autism and special needs, said an informal survey conducted over the last week revealed misgivings about spending $20 million on a new building instead of programs and services.
Of approximately 300 respondents, nearly two-thirds thought the money should be shared to benefit those with developmental disabilities other than autism.
Michael Lewis, president of the Autism Society of B.C. board and vice president of the Autism Society of Canada, said at this point it's unclear what the purpose of a new centre would be.
He said he hasn't heard much enthusiasm for the idea and emphasized the centre shouldn't replicate existing services.
Cocchia said such criticism is "frustrating."
"We have this vision of a centre. We think it's a good vision. We think that there's a lot of support for it," he said. "Now if somebody else had a proposal [and] they thought that this money should all go into one specific form of training, then they should put together that proposal and present it to the government."
crolfsen@vancouversun.com
© Vancouver Sun 2008
--------------------
Vancouver Sun
Friday August 1, 2008
Autism centre one step closer
Couple asked to put together proposal for long-held vision
Catherine Rolfsen, Vancouver Sun
VANCOUVER - A power couple is crafting a pitch to the provincial government for an autism centre to help families such as theirs that are dealing with the disorder.
Sergio Cocchia and Wendy Lisogar-Cocchia -- who own Vancouver's Century Plaza Hotel and Spa, and have a 13-year-old son with autism -- envision an autism research and support centre that could cost up to $34 million to build.
"What we hope is that, when you get this diagnosis, there's a place that you can go, where you could access all of the material, the professionals, the treatment plans, and you could prepare yourself for the challenge that's ahead of you," said Sergio Cocchia.
For years, the Cocchias have been speaking with Premier Gordon Campbell about the possibility of a centre.
Their dream started to materialize in the 2008 throne speech, when the province committed to developing a facility to "provide a residential environment for children with autism and create a national hub for research and a centre for parental supports."
After the speech, Campbell told The Vancouver Sun he asked the Cocchias to put together a proposal and a business plan.
Minister of Children and Family Development Tom Christensen said Thursday the government has "talked notionally about a commitment of up to $20 million but we really don't know yet what it will take."
Christensen said the Cocchias have been asked to consult with autism experts and families about what the centre should look like.
Last week, the Cocchias invited experts and stakeholders to have their say. Cocchia said a website is also planned to allow everyone to weigh in. He said early consultation suggests the centre might be most useful in a location outside Metro Vancouver.
Preliminary estimates peg the cost of building the centre at $34 million, Cocchia said, meaning "aggressive fundraising" will be needed.
Not everyone is keen on the Cocchias' vision. Some stakeholders said that if government money is available, it should go toward programs and services rather than a building.
But Daniel Weeks, chair of Simon Fraser University's department of psychology, called the proposed centre "an incredibly exciting development."
"If this all works out as I understand it will, I think B.C. will be clearly a national if not international leader in autism services, autism research, autism intervention," he said.
Weeks said the facility could help attract a "world-class" candidate to fill the newly formed position of national chair in autism research and intervention at SFU.
Clair Schuman, executive director of Autism Community Training, said a preliminary consultation with her advisory council and other members of the autism community suggested the idea of a centre "had promise."
But University of B.C. autism expert Pat Mirenda questioned why there was no consultation with the autism community before the couple was asked to develop the proposal.
And although she believes the Cocchias are well-intentioned, she's not convinced a centre is what's needed.
"If we have $20 million, why would we spend it on a building and not just increase services or training?" she asked.
Moms on the Move, a network for families coping with autism and special needs, said an informal survey conducted over the last week revealed misgivings about spending $20 million on a new building instead of programs and services.
Of approximately 300 respondents, nearly two-thirds thought the money should be shared to benefit those with developmental disabilities other than autism.
Michael Lewis, president of the Autism Society of B.C. board and vice president of the Autism Society of Canada, said at this point it's unclear what the purpose of a new centre would be.
He said he hasn't heard much enthusiasm for the idea and emphasized the centre shouldn't replicate existing services. Cocchia said such criticism is "frustrating."
"We have this vision of a centre. We think it's a good vision. We think that there's a lot of support for it," he said. "Now if somebody else had a proposal [and] they thought that this money should all go into one specific form of training, then they should put together that proposal and present it to the government."
crolfsen@vancouversun.com
ILLUS: Colour Photo: SERGIO COCCHIA: 'We have this vision. We think there is a lot of support for it' ;
---------------------
From the Vancoucer Province Newspaper:
Autism-centre proposal draws criticism
We need services, especially in rural areas, parents say
Cheryl Chan
The Province
Sunday, August 03, 2008
Government funding for autism should go to services and programs instead of bricks-and-mortar, says one B.C. autism support group upset over the premier's promise to build a new autism centre.
Gordon Campbell's throne speech committed at least $20 million toward the capital costs of a proposed "centre for autism education and research" that will "provide a residential environment for children with autism and create a national hub for research and a centre for parental support."
Vancouver hoteliers Sergio Cocchia and Wendy Lisogar-Cocchia are drawing up the proposal for the centre. Costs are pegged at about $34 million, with private fundraising to pick up the rest.
But Dawn Steele of Moms on the Move, which conducted an informal web survey, says that 90 per cent of 340 respondents rejected the idea of a new centre.
"Overwhelmingly, people said a building is the least important in terms of priority," said Steele, who has a 15-year-old autistic son.
Sergio Cocchia said feedback from the first consultative meeting on July 24 was positive and that most people "want to examine the potential of the centre and see if it's worth doing."
The Cocchias, who own the Century Plaza Hotel and Spa in Vancouver and have a 13-year-old son with autism, have been urging the government to create an autism centre for years.
"We saw the throne speech as the chance to put together a proposal," said Sergio, who envisions a one-stop facility that centralizes knowledge and treatment for austistic children, offers therapy and support services for their family, and will house Simon Fraser University's future national chair in autism research and intervention. Possible sites include Burnaby Mountain and the Fraser Valley.
On Friday, Minister of Housing and Social Development Rich Coleman said there is no "hard and fast budget" for the building of the centre, but it is "notionally between $20 to $25 million" and will come out of his portfolio. Programs will be delivered by the Ministry of Children and Family Development, he added.
Both Coleman and Cocchia stressed that the project is only in the consultative stage, with no proposals even crafted yet.
Steele called the proposed centre "well-intentioned," but not the best use of taxpayers' dollars. "Research facilities, therapy services -- these can be done anywhere," she said. "What we need are outreach programs and locally delivered services, especially to rural communities."
Cocchia doesn't disagree.
"We all need services," he said, adding that he hopes a centre will "help centralize the attention for autism and its services and hopefully will lead to more services, more help and better understanding."
There are more than 5,100 children and youth diagnosed with autism in B.C.
chchan@theprovince.com
© The Vancouver Province 2008
---------------------
The Vancouver Sun:
Planned autism centre isn't what parents say they want
Letter
Saturday, August 02, 2008
Re: Autism centre one step closer, Aug. 1
Let me get this straight: Premier Gordon Campbell, who recently signed an order denying support to adults with IQs over 70, asked a Vancouver "power couple," Sergio Cocchia and Wendy Lisogar-Cocchia, to come up with plan for a building to house autism services?
The "notional" commitment of $20 million in public funding Victoria is putting up for the privately developed project would only pay for partial costs of a building -- nothing for operating, staffing, training, managing, maintaining or assisting families.
Families of children with autism have indicated that the project won't meet their overwhelming needs. The Moms on the Move survey shows that more than 90 per cent of 340-plus respondents said it was more important to deliver services in local communities.
Why isn't the ministry of children and family development, which has responsibility for autism policy, doing the consultation itself? Why weren't its staff present to answer questions about government's role and intentions during the Cocchias' invitation-only consultations at their downtown hotel? How could others submit competing proposals when no one else was informed that $20 million was available?
Families struggling to care for children with autism spectrum disorders desperately need increased services and support, and no doubt the Cocchias are well-meaning in trying to help, but why is the premier bypassing appropriate channels to get this money spent?
Patti Bacchus
Coordinator
Vancouver Parents for Successful Inclusion
© The Vancouver Sun 2008
---------------
A listmate shared this article, I cannot get an online copy (as yet):
Hello
Canadianfamily.ca
Page 71 of Sept issue
“Canadian Family: Great Teacher Awards”
Heather Titley: Teaches K in St. Jerome, Quebec…….how she welcomed a new student, with ASD, into her class, and taught all her students to be open-minded, caring and compassionate”.
-------------
This was pulled off another list, Julie Cole on Autism on "Doctor in the House"
http://www.youtube. com/watch? v=6sLKINwKGBI
-----------------
A listmate shared this resource for us:
Walk a Mile in His Shoes
Thursday, July 31, 2008
By: Carin Yavorcik
New book details the life of a young man with autism
With the number of individuals diagnosed with autism spectrum disorders on the rise, all of us are likely to interact with individuals on the autism spectrum every day. Thus, it's important to be educated about the subject and what better way than to "walk a mile" in the shoes of a person with autism. Written for middle-school-age kids, Joanna Keating-Velasco's latest book, In His Shoes, details highlights of the school year of Nick, a 13-year-old boy with autism.
In His Shoes cam be a tool for classrooms, community groups and families to promote discussions about life on the autism spectrum. Through a series of "Points to Ponder" after each chapter, young readers learn ways to offer support and encouragement to individuals with autism disorders and similar challenges. In His Shoes allows kids to get to know one of the "Nicks" who may be in their classroom and to understand some of the reasons why he interacts the way he does. In the process, they will also learn ways to communicate and provide support and friendship.
Learn more or purchase the book at Amazon.com.
----------------
And here is another book that a listmate shared as a resource for all of us, again looks quite interesting:
New Book Details ABA Successes
Thursday, July 31, 2008
By: Carin Yavorcik
"Triumphs in Early Autism Treatment" tells "best-outcome" case studies
Triumphs in Early Autism Treatment offers a wealth of insight and hope to both parents and clinicians. This book documents the latest research that shows children who receive Applied Behavior Analysis treatment consistently progressing in skill development. A must-read for parents and clinicians, this book is the first to document "best outcome" case studies using exclusively ABA treatment.
Key features include: first-hand accounts of the intellectual and behavioral progress of seven autistic children, written in a narrative style by the ABA professionals who conducted the consultations; an overview of autism research prior to ABA and an introduction to the development of the method; and an analysis of ABA treatment demonstrating why ABA is the most effective of all treatment methods. Contributors include Audrey Gifford, who is both a professional behavior analyst and a parent of an autistic child who received ABA treatment.
For more information or to purchase the book, please visit Amazon.com or Springer Publishing Company.
Please forward this email to your lists or anyone you think might be interested in attending this workshop.
Thanks,
Karen Robinson
AFASE at School
www.afase.com
905 427 7524
AFASE at school
Presents
Advocating For Appropriate Special Education
Saturday, September 6 2008
10:30 a.m. – 4:30 p.m.
This full-day workshop is designed to empower you by providing current special education
information, strategies, and skills that will enable you to advocate for appropriate special education
programs and services in a way that is both assertive and collaborative
Audience: Parents, Students, Teachers, Educational Assistants, and Community Organizations
Lindsay Moir who is retired from the Ministry of Education is considered to be an expert in special
education issues. He will present an interactive, discussion-based workshop on Current Issues in
Special Education.
Karen Robinson the owner of AFASE at School will present Special Education Advocacy:
Everything you Should Know. Topics include: The Rules of Advocacy, The Special Education
Program, Needs Statements, IPRC's and the Appeal Process, The good IEP with Specific Goals,
Measurable Expectations and ABA methods.
Each presentation will allow time for Q & A
Coffee and pastries, and a light lunch will be provided
Ajax Public Library
55 Harwood Avenue S.
Ajax, Ontario
L1S 2H8
SPACE IS LIMITED - REGISTER EARLY TO RESERVE YOUR SPOT
*Early bird rate: $85.00
*At the door: $100.00
To register go to http://www.afase.com/Workshop.html
or e-mail: karen.robinson@afase.com
or phone: 905-427-7524
*Fee includes refreshments and handouts for each presentation
http://www.barrieadvance.com/barrieadvance/pictorial/112906
google alert
Jonathan Howard made a stop in Barrie Saturday on his marathon across Canada to raise awareness about autism.
Howard was accompanied by two-time Paralympian Terry Robinson, Barrie MP Patrick Brown and others as he made his way to the Autism Ontario booth at Kempenfest where he was greeted with applause.
“I’m almost at 3,500 km, almost at the halfway point,” he said. “I’m excited to be here in Barrie.”
Howard is running coast-to-coast raising awareness and, hopefully, $2.5 million for charities that work with autistic children and their families along the way.
“Running across Canada was always a dream of mine, and I knew that I wanted to do it for a cause that needs attention,” he said.
“ASD (Autism Spectrum Disorder) affects one in 165 children born. People need to know that. There needs to be more support services and there has to be more research and education in the public about it.”
Howard started his run in St. John’s, Nfld, in March and will finish when he reaches Victoria B.C. in December.
He said the trip has been going well so far, but he’s been busy.
“Not only am I doing six marathon distances a week, I am doing one to two fundraisers a week. But the word’s getting out there.”
For more on Howard and his run, click the link provided
From a listmate
Vancouver Sun
Friday August 1, 2008
Autism centre one step closer
Couple asked to put together proposal for long-held vision
Catherine Rolfsen, Vancouver Sun
VANCOUVER - A power couple is crafting a pitch to the provincial government for an autism centre to help families such as theirs that are dealing with the disorder.
Sergio Cocchia and Wendy Lisogar-Cocchia -- who own Vancouver's Century Plaza Hotel and Spa, and have a 13-year-old son with autism -- envision an autism research and support centre that could cost up to $34 million to build.
"What we hope is that, when you get this diagnosis, there's a place that you can go, where you could access all of the material, the professionals, the treatment plans, and you could prepare yourself for the challenge that's ahead of you," said Sergio Cocchia.
For years, the Cocchias have been speaking with Premier Gordon Campbell about the possibility of a centre.
Their dream started to materialize in the 2008 throne speech, when the province committed to developing a facility to "provide a residential environment for children with autism and create a national hub for research and a centre for parental supports."
After the speech, Campbell told The Vancouver Sun he asked the Cocchias to put together a proposal and a business plan.
Minister of Children and Family Development Tom Christensen said Thursday the government has "talked notionally about a commitment of up to $20 million but we really don't know yet what it will take."
Christensen said the Cocchias have been asked to consult with autism experts and families about what the centre should look like.
Last week, the Cocchias invited experts and stakeholders to have their say. Cocchia said a website is also planned to allow everyone to weigh in. He said early consultation suggests the centre might be most useful in a location outside Metro Vancouver.
Preliminary estimates peg the cost of building the centre at $34 million, Cocchia said, meaning "aggressive fundraising" will be needed.
Not everyone is keen on the Cocchias' vision. Some stakeholders said that if government money is available, it should go toward programs and services rather than a building.
But Daniel Weeks, chair of Simon Fraser University's department of psychology, called the proposed centre "an incredibly exciting development."
"If this all works out as I understand it will, I think B.C. will be clearly a national if not international leader in autism services, autism research, autism intervention," he said.
Weeks said the facility could help attract a "world-class" candidate to fill the newly formed position of national chair in autism research and intervention at SFU.
Clair Schuman, executive director of Autism Community Training, said a preliminary consultation with her advisory council and other members of the autism community suggested the idea of a centre "had promise."
But University of B.C. autism expert Pat Mirenda questioned why there was no consultation with the autism community before the couple was asked to develop the proposal.
And although she believes the Cocchias are well-intentioned, she's not convinced a centre is what's needed.
"If we have $20 million, why would we spend it on a building and not just increase services or training?" she asked.
Moms on the Move, a network for families coping with autism and special needs, said an informal survey conducted over the last week revealed misgivings about spending $20 million on a new building instead of programs and services.
Of approximately 300 respondents, nearly two-thirds thought the money should be shared to benefit those with developmental disabilities other than autism.
Michael Lewis, president of the Autism Society of B.C. board and vice president of the Autism Society of Canada, said at this point it's unclear what the purpose of a new centre would be.
He said he hasn't heard much enthusiasm for the idea and emphasized the centre shouldn't replicate existing services. Cocchia said such criticism is "frustrating."
"We have this vision of a centre. We think it's a good vision. We think that there's a lot of support for it," he said. "Now if somebody else had a proposal [and] they thought that this money should all go into one specific form of training, then they should put together that proposal and present it to the government."
crolfsen@vancouversun.com
ILLUS: Colour Photo: SERGIO COCCHIA: 'We have this vision. We think there is a lot of support for it' ;
from Nancy’s list
A reminder that Jonathan Howard, Run the Dream will be in Bradford (just 35 min north of Hwy 400) at 11 am at Bradford Lions Park for a Charity Bar B Q. Discount entry to the public swim in the outdoor heated pool has been provided by the Parks and Rec. For those from the GTA, if you haven't had a chance to meet Jonathan yet, please make the drive to Bradford to get a chance to thank Jonathan for the awareness he is raising across Canada!!!!
And following the Bradford event, Jonathan will be running into Barrie's Kempenfest at 2 pm and join the Autism Speaks Booth. Kempenfest is an amazing festival, including rides, crafts, antiques, a stage show, etc. Lots of fun for the whole family.
-------------------------
Canada AM:
Wednesday, July 30, 2008
CANADA AM
Manitoba's autism treatment attract doctor parents
RINALDO: A Halifax family is packing up and moving to Winnipeg in
order, they say, to get the treatment they need for their autistic
child. Three-year-old Eric was diagnosed with autism a year ago, but
Eric's parents say they haven't been able to get access to the kind of
support and treatment that their home province would offer. So, the
family is redirecting their careers, leaving home for Winnipeg.
Joining me now from Winnipeg is Eric's mother, Leanne Van Amstel; and
from Halifax, Eric's father, Leif.
Good morning to you both.
DR. LEANNE VAN AMSTEL: Good morning.
DR. LEIF SIGURDSON: Good morning.
RINALDO: Now, Eric didn't make the lottery. That's what happens in
Nova Scotia, you throw your name into a hat. He didn't make the
lottery.
So, this treatment is very expensive, I know. How are you handling all
of that? Or how were you before the move to Winnipeg?
DR. LEANNE VAN AMSTEL: Well, basically, we knew that Eric needed
intervention and he wasn't going to get it through the funded program
in Nova Scotia. And our main goal was to get him the intervention that
he needs.
So, we decided to pursue that privately even before his diagnosis,
because we knew what we were dealing with.
So, we had a psychologist on board, a speech language pathologist, a
couple of behavioural therapists. And we were essentially running that
completely on our own, to try to get him the level of intervention
that he needed.
RINALDO: And early intervention is key, is it not, Leif?
DR. LEIF SIGURDSON: Yeah, it really is. There's a lot of good evidence
out there that really shows that if you get at these kids quite early
on in their development that you can make a significant difference in
their eventual outcome.
RINALDO: Why choose Manitoba? Alberta, I'm told, has a wonderful
program as well.
DR. LEIF SIGURDSON: Well, you know, I'm in the fortunate position
really that there's job openings all across Canada with regards to
reconstructive surgery.
So, we looked at all the provinces. And Alberta does have a good
program, but it's privately delivered. The government will give you a
certain amount of funding to go out and find providers -- which is
sort of the situation we were in here as well, in terms of trying to
put together a program ourselves.
And the Manitoba program is publicly funded and it was very well
organized and had all the pieces together that we were looking for.
RINALDO: Right. I think that the message here is that this does not
fall under federal jurisdiction. Each province determines the
treatment course and basically how many hours and how much funding
they're going to provide.
You touched on this before, and I want to talk to Leif about this. You
actually put an ad in the newspaper because I know the two of you are
giving up pretty lucrative jobs although, as you did say, you have one
to go to.
Show me this newspaper ad that you've put out.
DR. LEIF SIGURDSON: I don't know if you can see it that well. But that
was in the paper on Saturday.
RINALDO: And what does it say exactly?
DR. LEANNE VAN AMSTEL: Well, I just was announcing the closure of my
practice. And I put in that I'm leaving Nova Scotia "due to inadequate
resources and services for children with autism spectrum disorder in
this province. I sincerely regret the inconvenience this will pose to
the 1,117 patients on my waiting list."
So, it's actually a requirement of the College that I announce the
closure of my practice.
RINALDO: Right.
DR. LEIF SIGURDSON: But I've been in practice here for eight years.
And I've treated a lot of patients. And I wanted my patients to know
that I was not leaving for a better lifestyle or more money.
And I also wanted to draw attention to the fact that there's a
significant number of children here in Nova Scotia that get little or
no treatment for autism spectrum disorder as a result of the lottery
and underfunding of the program.
RINALDO: Leanne, let me put this question to you. There's been some
discussion about putting autism under the Canada Health Act which
would make it, I suppose, universal across the country and require the
provinces to give equal access.
What do you think of that idea? The federal government is not that
keen on it because they think it should be up the provinces to
administer it. The funding.
DR. LEANNE VAN AMSTEL: I think it would definitely be a move in the
right direction. If you look at the numbers, one in 150 children born
today will be diagnosed with autism. And the rate in boys is on the
order of one in 94. So, it's a significant problem. It's everywhere
really, if you look around.
And in the health-care system that we have in Canada, the principles
are that it's supposed to be universal and is supposed to be
accessible for everybody who needs it. And, clearly, in the case of
autism that isn't the case. And there is a significant variation from
province to province.
So, I think making a federal issue, putting it under the Canada Health
Act, would be a move in the right direction. I think that's the way it
should go.
RINALDO: Okay. Thank you both for joining us this morning and sharing
your story with us. And good luck in Winnipeg.
DR. LEANNE VAN AMSTEL: Thank you.
DR. LEIF SIGURDSON: Thank you.
Dr. Leanne Van Amstel, Mother of Autistic Child Dr. Leif Sigurdson,
Father of Autistic Child
----------------------
From Nova Scotia Chronicle Herald, Across Nova Scotia Section:
Thursday, July 31, 2008
NDP: N.S. needs better autism care, and the federal government should help
Nova Scotia’s Opposition leader is calling on the province to make autism treatment a priority after a Halifax doctor announced he’s leaving Nova Scotia because his son isn’t getting adequate care.
Dr. Leif Sigurdson announced last week that he is moving to Manitoba where better services for autistic children are available.
Sigurdson is a reconstructive plastic surgeon and his wife recently completed her studies in radiology.
NDP Leader Darrell Dexter says provincial and federal health ministers need to act to place Autism Spectrum Disorder under the Canada Health Act.
Dexter says the move would ensure equal treatment for all Canadian families affected by autism no matter which province they live in.
The NDP are also calling for Ottawa to enact a national strategy on autism.
-----------------
Suzanne from Autism Speaks has been working hard in Alberta - this is great news that Smitty's is supporting Autism Speaks in such a manner. A good thing comes out of some bad PR from a few months back. Kudo's to Smitty's Head Office:
FYI Nancy -
FOR IMMEDIATE RELEASE
SMITTY’S JOINS AUTISM SPEAKS CANADA IN CAMPAIGN FOR AUTISM RESEARCH
Eleven Smitty’s locations in Edmonton area launch Puzzle Piece Campaign to raise money and awareness about autism.
Edmonton, AB (July 31, 2008) – On August 1, Smitty’s Restaurants in Edmonton, St. Albert, Red Deer and Sherwood Park will launch a month-long "Puzzle Piece" promotion to raise money for autism research and awareness. Customers at 11 Smitty’s Restaurant locations will be able to purchase $1 Autism Speaks puzzle pieces, with all proceeds being directed towards autism research. The campaign ends on September 7, the day of Autism Speaks Canada’s inaugural Edmonton Capital Region Walk Now for Autism being held at Lion’s Park in St. Albert.
“We are very excited to have this opportunity to raise much needed dollars to support autism research in Canada. We have an incredible staff who are ready to make this campaign a success and a supportive clientele who we know, will help us achieve our goal of raising $10,000 for this worthy cause,” said Rob Sroka , Vice-President of Lavtor Holdings, owners of 10 of the 11 restaurants participating.
Upon hearing about the campaign, Kevin Mockford, owner of the Sherwood Park location jumped at the chance to participate. “It’s a great way for us to show our support of the autism community and we’re glad to be on board,” noted Mockford.
“Smitty’s has done a wonderful job in turning a challenging incident in early July into an incredible positive for the autism community. The real thanks goes to Sarah Seymour and her family for identifying a great opportunity to raise awareness and support for autism in the Edmonton area and across Canada . Sarah has told me that she’ll be among the first to visit her local Smitty’s with her 5 year old daughter Eowyn, who is on the autism spectrum,” noted Suzanne Lanthier, Executive Director of Autism Speaks Canada.
ABOUT AUTISM SPEAKS CANADA
Autism Speaks Canada, the Canadian arm of Autism Speaks, is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention and treatments for autism, and to advocating for the needs of individuals with autism and their families. Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners and served as vice chairman, General Electric, and chief executive officer of NBC for more than twenty years. To-date, over $6 million in funds have been provided to the Canadian autism research community from coast to coast in grants provided by Autism Speaks. To learn more about Autism Speaks, please visit www.autismspeaks.org.
ABOUT AUTISM
Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by extreme behavioral challenges. Autism spectrum disorders are diagnosed in one in 150 children, affecting four times as many boys as girls. The diagnosis of autism has increased tenfold in the last decade. There is currently no known cause for autism. Learning the early warning signs is key to early diagnosis and early treatments and interventions.
-----------------
The Toronto Star:
They didn't spend summer relaxing by the gene pool
COLIN O'CONNOR/TORONTO STAR
Lauren Harper, 20, a summer intern at the Hospital for Sick Children, researches pediatric brain tumours in a lab. The Queen's University student is one of five interns hand-picked to discuss their research at a symposium today.
University students spend 12 weeks in labs on real research projects at Sick Kids hospital
July 24, 2008
Kristin Rushowy
EDUCATION REPORTER
It's not easy to explain what your summer job is when it involves single nucleotide polymorphisms.
Even Benjamin Kwan didn't know what they were at the start of his first year as a summer intern at the Hospital for Sick Children.
"It was a daunting experience," says the 21-year-old, now in his third summer of the program, adding he quickly learned SNP is a genetic variant.
Kwan is one of 132 university undergraduates who've landed coveted summer internships at Sick Kids, working on real research projects with top researchers. Today, they wrap up their 12-week session at a symposium where a handful will present their work.
Kwan has been working on a project identifying genes in autistic children. Lauren Harper is researching the origins of pediatric brain tumours. Others have looked at obsessive-compulsive disorder and even salmonella.
The goal of the program, which began in 1974, is to inspire students to consider careers in research and medicine.
Kwan is heading to medical school at the University of Ottawa this fall after three years at the University of Toronto.
"It's really opened up possibilities, seeing the connection between medical research and clinical applications," says Kwan, while taking a break from his lab in the MaRS building on College St.
"You are exposed to researchers, clinicians – you are paired with world-class researchers."
While all humans have duplicates and deletions in their genes, he's been looking for autism-specific ones that he says could help with early diagnosis and intervention. His work was part of a paper published in January to wide acclaim.
"When I tell people about the research, they find it interesting – but it takes a while to explain exactly what I'm doing."
Harper, 20, who attended Oakville Trafalgar High School, is in her third year of life sciences at Queen's University in Kingston.
At Sick Kids, she's studying medulloblastoma, a pediatric brain cancer, and how cancer stem cells develop. The treatment for that cancer isn't effective right now, and the research she's a part of could affect that, she adds.
"It's great to see how the research we are doing is helping people and making change," she says.
"People are impressed," she says of her summer job. "To go from teaching sailing to working in a brain tumour research lab ..."
Harper is one of five students hand-picked to give talks today on their work, says John Brumell, chair of the summer student program.
"There's an amazing cross-section – from cancer to obsessive-compulsive disorder," he says. "It's a really good chance for students to showcase what they've done over the summer."
------------------
This from the Globe and Mail:
Our disability welfare system needs rebuilding
Provinces and territories must amend legislation to ensure benefits are not clawed back
ANDRE PICARD
From Thursday's Globe and Mail
July 31, 2008 at 9:47 AM EDT
In the 2007 budget, Federal Finance Minister Jim Flaherty announced the creation of the registered disabilities savings plan.
The RDSP is a taxation measure that allows families of children with physical, mental or development disabilities to invest up to $200,000 in a tax-free shelter, much like a registered education savings plan used to accrue funds for a child's university or college education.
Because not every family has sufficient money to invest, the RDSP program was supplemented with two other measures, the disability savings grant and the disability savings bond that will provide cash contributions to plans.
Over time, RDSPs will provide billions of dollars to supplement income, enable home ownership and enhance quality of life for hundreds of thousands of Canadians with disabilities, many of whom rely on social assistance and live in poverty.
According to the RDSP calculator created by the Planned Lifetime Advocacy Network (PLAN), the family of a nine-year-old disabled girl that invests $1,500 annually over 20 years would be able to provide her with $1.3-million in additional income between the ages of 39 and 83.
Under federal legislation, a person with a disability can continue to benefit from other social programs - the Guaranteed Income Supplement, Old Age Security Pension and Canada Pension Plan - even if they withdraw funds from their RDSP.
However boring, the arcana of tax law do matter.
For the federal plan to really achieve its goal of lifting people with disabilities out of poverty, the provinces need to get on board, quickly.
Currently, recipients of social assistance who receive income from other sources (from employment or gifts) have their benefits clawed back. They can also be deemed ineligible for assistance based on their level of assets.
Clearly, it would be a perversity of public policy for provinces and territories to claw back funds set aside for people with disabilities by their families.
It would be equally perverse to say, as a matter of policy, that disabled people are ineligible for social assistance because they have assets in a RDSP.
Yet, to date, only British Columbia, Newfoundland and Yukon have exempted the RDSP as an asset and/or income.
What are the other eight provinces and two territories waiting for exactly?
How dare they consider pilfering money from the pockets of people with disabilities and their families?
The disability community does not have powerful lobbyists and chummy connections in corridors of power. But that is no reason to ignore their needs and exploit their financial vulnerabilities.
RDSP plans go on sale in December. There is no excuse for every province and territory to not have committed to amend its rules by that time.
Parents of children with disabilities - bipolar disorder, autism, spina bifida and countless other chronic conditions - already have a tremendous burden of care.
When their children grow into adulthood - as the vast majority now do thanks to medical advances - the cold reality is that most will be condemned to a life of poverty.
People with severe disabilities who are unable to work - about 500,000 countrywide - receive social assistance payments in the range of $10,000 a year in most provinces.
Attempts to break free of this poverty trap usually result in benefits being clawed back, though there are some innovative programs in British Columbia, Manitoba and Newfoundland that allow people with disabilities to supplement their benefits without being penalized.
The RDSP is an attempt to further change that untenable and counterproductive situation.
Al Etmanski, co-founder of PLAN, the group that successfully advocated for the creation of the RDSP - the world's first disability savings plan - noted, "Canada is the first country to recognize a global demographic tsunami - the first generation of people with disabilities to outlive their parents."
Mr. Etmanski knows the issue intimately, first and foremost as a parent. His daughter Elizabeth has Down syndrome, but at 29 is a college graduate bursting with life. In fact, the group got its start because parents such as Mr. Etmanski began asking the question: "What happens to our disabled children when we die?"
That led them to focus on making their lives better and richer in the present, all the while planning for the future, financially and otherwise.
For far too long people with disabilities have been hidden away, quietly cared for by their parents, with occasional assistance from an impersonal service delivery system.
PLAN parents decided what their children needed were not services and programs that keep them isolated and poor, but the rights and responsibilities of citizenship that make them contributing members of society.
Their audacity has changed the lives of many for the better. But improving the lives of some individuals through the astute use of tax laws and the creation of social networks that allow people with disabilities to live independently - two of PLAN's specialties - is only the beginning.
The disability welfare system in this country needs to be torn down and rebuilt.
The creation of the RDSP is a small step in this direction, one the provinces should support wholeheartedly, not undermine.
************
From a listmate
Wednesday, July 30, 2008
CANADA AM
Manitoba's autism treatment attract doctor parents
RINALDO: A Halifax family is packing up and moving to Winnipeg in
order, they say, to get the treatment they need for their autistic
child. Three-year-old Eric was diagnosed with autism a year ago, but
Eric's parents say they haven't been able to get access to the kind of
support and treatment that their home province would offer. So, the
family is redirecting their careers, leaving home for Winnipeg.
Joining me now from Winnipeg is Eric's mother, Leanne Van Amstel; and
from Halifax, Eric's father, Leif.
Good morning to you both.
DR. LEANNE VAN AMSTEL: Good morning.
DR. LEIF SIGURDSON: Good morning.
RINALDO: Now, Eric didn't make the lottery. That's what happens in
Nova Scotia, you throw your name into a hat. He didn't make the
lottery.
So, this treatment is very expensive, I know. How are you handling all
of that? Or how were you before the move to Winnipeg?
DR. LEANNE VAN AMSTEL: Well, basically, we knew that Eric needed
intervention and he wasn't going to get it through the funded program
in Nova Scotia. And our main goal was to get him the intervention that
he needs.
So, we decided to pursue that privately even before his diagnosis,
because we knew what we were dealing with.
So, we had a psychologist on board, a speech language pathologist, a
couple of behavioural therapists. And we were essentially running that
completely on our own, to try to get him the level of intervention
that he needed.
RINALDO: And early intervention is key, is it not, Leif?
DR. LEIF SIGURDSON: Yeah, it really is. There's a lot of good evidence
out there that really shows that if you get at these kids quite early
on in their development that you can make a significant difference in
their eventual outcome.
RINALDO: Why choose Manitoba? Alberta, I'm told, has a wonderful
program as well.
DR. LEIF SIGURDSON: Well, you know, I'm in the fortunate position
really that there's job openings all across Canada with regards to
reconstructive surgery.
So, we looked at all the provinces. And Alberta does have a good
program, but it's privately delivered. The government will give you a
certain amount of funding to go out and find providers -- which is
sort of the situation we were in here as well, in terms of trying to
put together a program ourselves.
And the Manitoba program is publicly funded and it was very well
organized and had all the pieces together that we were looking for.
RINALDO: Right. I think that the message here is that this does not
fall under federal jurisdiction. Each province determines the
treatment course and basically how many hours and how much funding
they're going to provide.
You touched on this before, and I want to talk to Leif about this. You
actually put an ad in the newspaper because I know the two of you are
giving up pretty lucrative jobs although, as you did say, you have one
to go to.
Show me this newspaper ad that you've put out.
DR. LEIF SIGURDSON: I don't know if you can see it that well. But that
was in the paper on Saturday.
RINALDO: And what does it say exactly?
DR. LEANNE VAN AMSTEL: Well, I just was announcing the closure of my
practice. And I put in that I'm leaving Nova Scotia "due to inadequate
resources and services for children with autism spectrum disorder in
this province. I sincerely regret the inconvenience this will pose to
the 1,117 patients on my waiting list."
So, it's actually a requirement of the College that I announce the
closure of my practice.
RINALDO: Right.
DR. LEIF SIGURDSON: But I've been in practice here for eight years.
And I've treated a lot of patients. And I wanted my patients to know
that I was not leaving for a better lifestyle or more money.
And I also wanted to draw attention to the fact that there's a
significant number of children here in Nova Scotia that get little or
no treatment for autism spectrum disorder as a result of the lottery
and underfunding of the program.
RINALDO: Leanne, let me put this question to you. There's been some
discussion about putting autism under the Canada Health Act which
would make it, I suppose, universal across the country and require the
provinces to give equal access.
What do you think of that idea? The federal government is not that
keen on it because they think it should be up the provinces to
administer it. The funding.
DR. LEANNE VAN AMSTEL: I think it would definitely be a move in the
right direction. If you look at the numbers, one in 150 children born
today will be diagnosed with autism. And the rate in boys is on the
order of one in 94. So, it's a significant problem. It's everywhere
really, if you look around.
And in the health-care system that we have in Canada, the principles
are that it's supposed to be universal and is supposed to be
accessible for everybody who needs it. And, clearly, in the case of
autism that isn't the case. And there is a significant variation from
province to province.
So, I think making a federal issue, putting it under the Canada Health
Act, would be a move in the right direction. I think that's the way it
should go.
RINALDO: Okay. Thank you both for joining us this morning and sharing
your story with us. And good luck in Winnipeg.
DR. LEANNE VAN AMSTEL: Thank you.
DR. LEIF SIGURDSON: Thank you.
Dr. Leanne Van Amstel, Mother of Autistic Child Dr. Leif Sigurdson,
Father of Autistic Child
From Nancy’s list
------------------
ON City TV this morning they discussed that Jay Serdula is in hospital with pneumonia and begged for donations to be sent into Kerry's Place to ensure his grueling swim was worthwhile. He is expected to make a full recovery, but let's all keep him in our prayers as he gains his strength back!!!!
From City TV yesterday;
Man Completes Swim Across Lake Ontario To Raise Awareness Of Asperger's Syndrome
Wednesday July 30, 2008
CityNews.ca Staff
It took a grueling 41 hours, but Jay Serdula managed to complete his swim across Lake Ontario to raise awareness for Asperger's Syndrome.
Serdula was diagnosed with A.S. 10 years ago, but hasn't let it stop him from achieving great things.
He touched the seawall at Marilyn Bell Park just after 3 am Wednesday morning after setting off from Niagara-on-the-Lake at 10am Monday. He swam all day and throughout the night and early hours to accomplish his impressive feat.
"Jay has Asperger's Syndrome which is on the autistic spectrum, high functioning. And he thought of this goal of swimming across Lake Ontario, as a personal challenge first, but then as a way to raise awareness of Asperger Syndrome," Jay's proud mom told CityNews.
--------------
from the Toronto Sun:
Lake swimmer pulls off epic
By ANGELA HICKMAN, SPECIAL TO SUN MEDIA
Sometimes the hardest part of a race is crossing the finish line.
For Kingston's Jay Serdula, who finished his swim from Niagara-on-the-Lake to Vicki Keith Point at 3:10 a.m. yesterday, there were times when it seemed the race against the lake would never end.
But, as his third morning of swimming approached, Serdula -- who made the swim to raise awareness of Asperger's Syndrome, a condition he was diagnosed with as a child -- touched land after over 41 hours in the water. His arms were heavy with exhaustion, barely leaving the water as he pulled the last strokes necessary to bring him to his goal.
When his fingers touched stone a cheer went up from the 20-plus volunteers who had been holding a shoreline vigil for nearly six hours.
The shoreline at Vicki Keith Point -- also known as the Leslie Street Spit -- is too rugged for relaxing, so an exhausted Serdula was wrapped in blankets and hustled into the lead boat, which took him to Polson Pier, where paramedics were waiting.
"That last kilometre was horrible. I think he was really feeling 'I'm not going to get there,' " said Eden Cantkier, one of Serdula's two pacers on Tuesday. "You watched him try with every last ounce of energy to get to the shore. ... Those periods were the worst."
Serdula was still in the hospital last night, but is expected to make a full recovery.
Although the weather was perfect, with very little wind and calm water, Serdula had to fight a strong easterly current for the last few kilometres, after not sleeping for nearly two full days.
Cantkier said when Serdula started hearing the crowd of people cheering him on from shore, his spirits rose because he knew he really was close.
Marilyn Bell was the first to successfully swim across Lake Ontario, and Serdula was originally supposed to land at Toronto's Marilyn Bell Park.
But at 6 p.m. it became clear that Serdula wasn't going to get to the park within the 36-hour window he had planned to complete his swim. So he came ashore instead at Vicki Keith Point.
----------------
From the Kingston Whig Standard:
Swimmer conquers lake
'I think that last kilometre was horrible'
Updated 5 hours ago
Sometimes the hardest part of a race is crossing the finish line.
For Kingston's Jay Serdula, who finished his 47-kilometre swim from Niagara-on-the-Lake to Vicki Keith Point at 3:10 a. m. yesterday morning, there were times when it seemed the race against the lake would never end.
As his third morning of swimming approached, Serdula touched land after more than 41 hours in the water. His arms were heavy with exhaustion, barely leaving the water as he pulled the last strokes necessary to bring him to his goal.
When his fingers touched stone, a cheer went up from the more than 20 volunteers who had been holding a shoreline vigil for nearly six hours.
Because of the condition of the shoreline at Vicki Keith Point - also known as the Lesley Street Spit - and his lack of strength, after Serdula made land he was pulled into a Zodiac and immediately wrapped in blankets, before being moved to the lead boat and taken to Polson Pier, where paramedics were waiting.
"That last kilometre was horrible. I think he was really feeling, 'I'm not going to get there,' " said Eden Cantkier, who was one of Serdula's two pacers on Tuesday.
"You watched him try with every last ounce of energy to get to the shore ... those periods were the worst."
Serdula was still in the hospital yesterday evening, but is expected to make a full recovery. By 5 p. m. yesterday, his core body temperature was back to normal after being down to 32.5 C -four and a half degrees lower than normal.
Although the weather was perfect, with very little wind and calm water, Serdula had to fight against a strong easterly current for the last few kilo-metres of his swim, after not sleeping for nearly two full days.
"He'd stroke and you'd think where does one come up with that at hour 39 or 40 or whatever" Cantkier said. "Where do you find that last bit of courage and strength?"
There were moments near the end of the day on Tuesday when Serdula wondered if he'd be able to finish.
"There was a time that he stopped and said he didn't think there was another side to this lake," she said, adding that during those moments the boat crew and his coaches helped pull him back into the present.
"You know it's his dream and that he can do it and [we'd say] 'One more stroke, swim with me ... let's try to make our way' and he would. He'd put his face back in [the water]."
Cantkier said when Serdula started hearing the crowd of people cheering him from the shore, his spirits rose because he knew he really was close.
"From the water [the shore] looked so close for too long," she said, adding that being able to hear the people waiting for him helped him gauge how close he really was.
From the shore, cries from the boat crew of "Follow Marilyn, Jay, follow Marilyn," could be heard from 1 a. m. onward. Made in reference to Serdula's swim master, Marilyn Korzekwa - the secretary for risk management and a medical doctor for Solo Swims of Ontario Inc.-who swam beside Serdula for his last five hours in the water, his support crew could just as easily have been reminding Serdula of his place in history.
Marilyn Bell was the first person to successfully swim across Lake Ontario and Serdula was originally supposed to land at Toronto's Marilyn Bell Park.
At 6 p. m., however, it became clear that Serdula wasn't going to get to the park within the 36-hour window he had planned complete his swim. His support crew made some phone calls and asked him how he would feel about finishing his swim at Vicki Keith Point, which would lessen the distance remaining by five kilometres, but still count as a complete swim across the lake.
"It was really presented to him as a suggestion," Cantkier said. "He was 'Whatever you think is best. Can we get there?'
"His spirits were good about it." Christine Johnson is the southeastern regional executive director for Kerry's Place Autism Services, one of the organizations Serdula's swim supported.
She told theWhig-Standardyesterday that Serdula's mission to bring attention to Asperger's Syndrome, a condition of which he was diagnosed as a child, has been more than fulfilled through his swim.
"We've been getting e-mails from people who are saying they have the diagnosis and now have a greater element of pride in the speaking about their diagnosis to others, because of what Jay has done," she said.
"[He proved] people with Asperger's are capable of swimming across Lake Ontario."
---------------
This comes from a BC advocate:
Last week, MOMS was invited to a private consultation meeting in Vancouver to learn about and offer comments on plans to build a new provincial centre for autism in the Lower Mainland. We were told that the Premier has personally committed one-time capital spending of $20 million for this project. The Premier's requirements include that this be spent on constructing a new high-tech building that could house autism services, that the project be approved before spring 2009 and that private fundraising or existing budgets be used to cover operating costs of any activities that may be conducted at this new centre.
MOMS applauds the province's commitment of new funding -- this is urgently needed and we hope to see these funds made available ASAP. However, we had some initial questions about process and purpose and agreed to conduct an informal open poll of families in our provincial network to seek broader input on community priorities for any new funding. Based on responses to date (226 and counting - thanks to all who participated, please add your own thoughts if you haven't already and pass the survey link on to others), we've written Premier Campbell outlining the questions and concerns raised by families and requesting more transparency in the allocation process to ensure that these funds go to the best possible use and are used to meet the most urgent needs in our community.
The premier's letter is copied below and attached, along with a preliminary summary of responses in our community poll.
===================
Dear Premier Campbell,
Attached, and copied below, please find a letter outlining questions and concerns regarding your commitment of $20 million in provincial funding to construct a new high-tech building to house a provincial autism centre.
Dawn Steele and Cyndi Gerlach
Moms on the Move
=================
July 29, 2008
Hon. Gordon Campbell,
Premier, British Columbia
Victoria, BC
Dear Premier,
Moms on the Move is a volunteer parent network that provides information, advocacy and support to families of people with autism and other special needs. Our provincial parent network reaches over 1,000 BC families, professionals, service providers and others.
Our families describe extraordinary hardship due to underfunding and major provincial service gaps for people of all ages with special needs, such as waitlists, supports denied to adults with autism or FASD and IQ over 70, no early intervention therapy for diagnoses other than autism, inadequate services in rural areas and schools and lack of support for families trying to care for challenging children.
On July 24th, we were invited with other autism community leaders to a private consultation meeting at the Century Plaza Hotel in Vancouver. We were delighted to learn there that you had personally committed $20 million in new provincial funding for autism in 2008-09.
Our meeting hosts outlined plans for a new provincial autism family centre in the Lower Mainland, with the $20 million directed to construct a new high-tech building that could house research, treatment, residential facilities, training and outreach. We were told the facilities would include a swimming pool, sports centre and playing fields for children with autism. The proponents, parents of a child with autism, sought input and support regarding proposed activities and governance for the new centre. They noted their intention to hand over management of the facility to the community once it was built. Other points noted:
• The proposal is being developed at the Premier’s request. He personally called proponents before the 2008 Throne Speech to give a “heads up” that funding was approved.
• The Premier invited proponents to meet him after the Throne Speech and requested a formal proposal for one-time capital funding of $20 million for a building to house a provincial autism centre.
• Proponents don’t know which Ministry budget is funding this. A Board was established, consultants engaged, private fundraising is underway and private community consultations initiated to flesh out the proposal, all based on the Premier’s personal “commitment” to proponents.
• Proponents not aware of a competitive process or competing proposals for allocating the $20 million.
• Proponents cite the following criteria specified by the Premier for spending the $20 million:
• Funds can only be spent on a building. Suggestions that funds might be better spent on enhancing existing services or programs can therefore not be entertained.
• Government won’t fund operating costs for any proposed activities or services at the new centre. Such activities must be funded from existing budgets or through private fundraising.
• Private fundraising needed to supplement the $34 million cost of the proposed building.
• The new provincial centre is to be located somewhere in the lower mainland, possibly at SFU.
• Formal proposal must be submitted by fall 2008, with groundbreaking before spring 2009, or the Premier’s $20 million “commitment” will expire.
• No needs assessment done.. Proponents have long been lobbying the premier to fund such a centre.
• Proponents know of no public consultations conducted/ planned by government to ensure the $20 million is spent in the public interest. Proponents are arranging their own consultations.
Provincial autism policy in BC falls under the Ministry for Children and Families. There is no reference to a new provincial autism centre as a priority in any publicly-available Ministry documents, including the Ministry’s service plans or the new Ministry action plan. BC Budget documents on the Finance Ministry Website contain no reference to funding an autism centre. The Minister responsible did not mention these plans in the spring 2008 Estimates debates. Ministry staff was not available at the July 24 consultation to answer questions. Government’s only public reference to this initiative to date was a sentence in the Throne Speech.
At the July 24th meeting, we agreed to a suggestion to use the MOMS network, as the province’s largest autism/special needs parent network, to help gather feedback on this proposal. We developed and distributed an informal Web questionnaire through provincial networks to assess parent views and priorities. Preliminary results (attached) indicate that families have serious concerns about the process and parameters that you established for allocating those funds. Key concerns include the following:
• Why spend $20 on a new building instead of on programs and services? (Why not use some of the hundreds of under-utilized public schools in BC instead? Why not instead help people in dire need because of your decision to deny services based on IQ over 70?). Only 4% (8 of 226) respondents so far think a new building is a priority for new spending.
• Why more facilities in the lower mainland, where most existing expertise/services are concentrated, instead of targeting outlying communities that suffer limited expertise and services? Respondents favour more services delivered locally to a new provincial centre of excellence by a majority of 92:8.
• Why more resources for autism only vs. supporting all children with special needs that could benefit from intervention therapies? Many existing autism programs would greatly benefit children with other special needs who are currently denied access. A majority of respondents (57%), most of whom were families of children with autism, would prefer to see the money going to both autism and others.
• Why are plans being developed outside the normal policy processes, with single-source procurement and no broad community/family engagement? 83% of respondents would prefer spending decisions made by the Minister responsible, in full consultation with families, professionals and providers. 96% believe funds would be spent more effectively following an open and transparent competitive bidding process and evaluation of proposals by a representative panel of community members.
Information provided to date raises questions about process and whether this is the best way to serve the public interest. It’s not clear why a significant sum of public dollars would be “committed” in the manner described – i.e. outside the Ministry’s special needs/autism policy structure, provincial procurement policy, and with no public consultation or needs assessment. We therefore ask for an immediate clarification re your role as Premier in allocating these funds and setting project parameters. It would also be helpful for the MCFD Minister to provide a public explanation regarding the Ministry’s role and responsibilities.
In closing, we wish to stress that notwithstanding the above questions, we applaud the news of your government’s commitment of $20 million in new funding to serving vulnerable children. We offer our full support to assisting the Minister responsible to ensure these funds are targeted at the most urgent needs, in a manner consistent with the public interest. We propose that this requires starting afresh, with full and inclusive community consultation conducted by a neutral party to review existing parameters, and with an open, fair and transparent decision-making process to ensure these public funds are well spent.
We look forward to your prompt reply.
Dawn Steele & Cyndi Gerlach
Moms on the Move
CC: Minister Tom Christensen; Representative for Children & Youth Mary Ellen Turpel Lafond, MOMS
----------------------
And this also from BC:
Youth advocate lashes IQ-based denial of care
Liberal policy can deny services to mentally disabled with IQ over 70
Lindsay Kines
Times Colonist
Friday, July 25, 2008
B.C. is forcing developmentally disabled teenagers onto the street by denying them services based on IQ tests, the children's representative says.
Mary Ellen Turpel-Lafond said she's "very disappointed" with the provincial government for quietly giving itself the right to deny services to disabled people with an IQ over 70.
The move gets around a B.C. Court of Appeal ruling that found government didn't have the authority to turn its back on people based on IQ scores.
"I feel very strongly that a civil society does not base a policy for developmentally disabled adolescents on IQ," Turpel-Lafond said. "It's not a progressive approach."
The representative says her office is already dealing with about 200 cases of developmentally disabled teenagers who lost all their supports once they turned 19. Most of them were children in care with no parent to advocate for them. In some cases, they were denied services because their IQ is one or two points above 70, she said.
"As someone who actually works with these children and adolescents, I think it's very important for British Columbians to know when they're walking home from work today that those kids sleeping on streets may very well be the kid with a 72 IQ, who can't live independently and have no parental support, and many of them may very well have come out of the care system," she said.
"Of course, I'm profoundly concerned about that. I will do everything as representative to persuade the powers that be to reconsider this decision."
Housing and Social Development Minister Rich Coleman claims the decision is just temporary, while government develops a better way of defining what it means to be disabled.
But groups that advocate for the disabled are skeptical, given that they received no warning of the move, which was done in private by order in council. They fear it's simply a back-door attempt to save money by creating an arbitrary cut-off to services.
Turpel-Lafond said the government's actions essentially "undo" a 2007 B.C. Court of Appeal decision known as Fahlman vs. Community Living B.C.
In that case, Fiona Gow took CLBC to court on behalf of her disabled son, Neil Fahlman, because the Crown agency said he had an IQ of 79 and was able to fend for himself. The court ruled in favor of Fahlman, finding that IQ wasn't one of the criteria for assessing a person's disability under the Community Living Authority Act.
Turpel-Lafond said that now, rather than coming up with a better definition of what being disabled means, the government has "rolled that definition back to another era."
"I'm disappointed that instead of trying to implement what the Court of Appeal said in Fahlman that the decision has been taken to go back to a rigid IQ definition."
She's said she's also troubled that Premier Gordon Campbell and Children's Minister Tom Christensen apparently signed the order with little or no consultation.
"They couldn't have consulted on the wording, because certainly if they would have consulted me, I'd say, 'Please make it specifically [apply] at least to adults.' Even though I would not support that."
The government claims the rule change applies only to adults, but Turpel-Lafond said that's not clear in the wording. "I'm just not sure," she said. "Will some children be in the door and then shown out? Will they not get in?"
lkines@tc.canwest.com
© Times Colonist (Victoria) 2008
------------------
Canadian Press from Nova Scotia:
N.S. Opposition leader calls for better services for autistic children
HALIFAX — Nova Scotia's Opposition leader is calling on the province to make autism treatment a priority after a Halifax doctor announced he's leaving Nova Scotia because his son isn't getting adequate care.
Dr. Leif Sigurdson announced last week that he is moving to Manitoba where better services for autistic children are available. Sigurdson is a reconstructive plastic surgeon and his wife recently completed her studies in radiology.
NDP leader Darrell Dexter says provincial and federal health ministers need to act to place Autism Spectrum Disorder under the Canada Health Act.
Dexter says the move would ensure equal treatment for all Canadian families affected by autism no matter which province they live in.
The NDP are also calling for Ottawa to enact a national strategy on autism.
--------------------
A listmate sent me this article regarding the Radio Talkshow Host Michael Savage story:
Savage remarks raise issue of standards
Monday, July 28th 2008, 1:09 PM
The recent passing of George Carlin, the comedian particularly known for his skit on the seven words you can't say on radio and television raised some provocative questions.
Most recently we have radio's third most popular radio host, Michael Savage, spewing such ignorance abut autism as "In 99% of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is."
There's none of George Carlin's seven words in that quote, but I can only imagine how the parents of autistic children and grown ups feel hearing that. I am a mentor to a teenager with a form of autism, and it baffles me how such a man as Mr. Savage is given a national platform. Thankfully some sponsors have left. I would hope the names of the sponsors who remain will be widely reported.
I've never been able to bring myself to ever listen to Howard Stern, but once in flipping channels I came across a televised broadcast of his radio show, where he was holding up the bones of a young woman who had died of a drug overdose and doing "jokes" about each bone.
Obviously I'm for freedom of speech, but if it takes our culture further and further into what feels like hell, it begs the question: Do we have any standards for these people, and if not, why not?
I've been on television and radio for the past thirteen years exercising free speech. I believe the Howard Stern and Michael Savages of the world are re-defining free speech in a way that demeans America.
-----------------
AFASE at school
Presents
Advocating For Appropriate Special Education
Saturday, September 6 2008
10:30 a.m. – 4:30 p.m.
This full-day workshop is designed to empower you by providing current special education
information, strategies, and skills that will enable you to advocate for appropriate special education
programs and services in a way that is both assertive and collaborative
Audience: Parents, Students, Teachers, Educational Assistants, and Community Organizations
From Pat
hey look at us listed on this site....
http://www.gov.on.ca/children/graphics/241559.pdf
Pat La Londe
From Nancy’s List
Run the Dream
Below is from York Region papers, and they will do a full story on the Bradford event for next week. I have been told that the Bradford paper will be announcing this event on their front page this Thursday. Today I recieved confirmation of attendance from MP Peter Van Loan also. I have a huge number of burgers for the charity Bar B Q, so I hope many of you can put aside an hour or so to attend at the Bradford Lion's Park from 11 am to 12 noon.
Jonathan will also be running with some families from Tim Horton's in Stroud into Barrie's Kempenfest starting at 2 pm, along Yonge Street and Minet's Point. At Kempenfest, he will join families at the Autism Ontario booth. The organizers in Barrie also have some dignitaries lined up to meet Jonathan.
If Jonathan can run across Canada to raise awareness of autism issues, I am sure we can each put aside an hour or so to show our suppot to him of his efforts!!!!
Cross-Canada runner stops in Bradford Saturday
Published on Jul 28, 2008
Jonathan Howard, who is running solo across Canada in an effort to raise funds and awareness for autism, will stop at Bradford's Lions Park Saturday from 11 a.m. to noon.
A charity barbecue will be held at the park with all funds going to the Run the Dream campaign.
Also expected to attend the barbecue is Terry Robinson, a two-time paralympian who has joined the Run the Dream team, as well as York-Simcoe MPP Julia Munro.
The solo run started in St. John’s, Newfoundland March 25 and Mr. Howard has so far covered more than 3,000 of the approximate 8,500 km of his planned journey.
---------------------
In my last mailing I shared an article from Halifax about a Dr. moving his family from Halifax to Manitoba for improved services for his son who has been diagnosed with autism. There is more coming out on that story in the Media Release below from MFEAT. Also attached to this mailing is a brochure from MFEAT and the Service Provider this family will be accessing:
MEDIA RELEASE
MANITOBA FAMILIES FOR EFFECTIVE AUTISM TREATMENT (MFEAT) WELCOMES NOVA SCOTIA FAMILY FORCED TO RELOCATE TO MANITOBA TO ACCESS PRE-SCHOOL AUTISM TREATMENT PROGRAM
28 July 2008
FOR IMMEDIATE RELEASE
MFEAT welcomes to Manitoba Dr. Leif Sigurdson and his wife Dr. Leanne van Amstel, parents of a child with Autism Spectrum Disorder (ASD) and medical migrants from Nova Scotia. As reported by CTV News last Sunday the family made the drastic decision to leave their careers in Halifax to access treatment for their three-year-old son, who was diagnosed with ASD a year ago. Their son will receive 35 hours of therapy per week in St. Amant's Applied Behavioral Analysis (ABA) program. It is unfortunate the family felt forced to relocate for sake of their child, but as Manitoba residents they will finally have access to the treatment their child needs to develop, while the province also gains two highly specialized medical professionals.
The disruption in the lives of this new Manitoba family is the reality facing many families caring for a child with ASD across Canada. While ASD is a serious neurologic condition of unknown cause, decades of studies have demonstrated that 25-35 hours of ABA per week significantly improves the cognitive and communicative function of children receiving it. The American Academy of Pediatrics, in its 2007 Clinical Report on managing ASD has written, “The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research … Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance …”.
Jamie Rogers, MFEAT’s Director of Communications can relate to the cross-country move made by the family, “When our two boys were diagnosed with ASD in BC in 2005 we were facing a debt of $80,000 per year to secure 35 hours of ABA per week. So we decided to move to Winnipeg to enrol in St Amant’s program. We learned of other out-of-province families in the program who waited tens of months without services following diagnosis or who were offered nothing at all. We are grateful to MFEAT for fighting to get the St Amant Pre-School ABA program in place, which has paid off enormously for our kids. No parent of a child with another serious medical condition has to move provinces or go bankrupt to obtain treatments that are proven effective, so why those with ASD? There is a Senate Standing Committee Report telling the government that families with an ASD child in this country are in a crisis that needs a national response, but it collects dust while our children and families endure major hardships.”
Founded in 1997, MFEAT is an advocacy and support group for families with a child, sibling, or loved one diagnosed with Autism Spectrum Disorder – a neurological condition that affects 1 in 150 children and has no known cure. Following years of negotiation with MFEAT, in 2002 Manitoba introduced a permanent pre-school ABA program for Manitoba families, the only one of its kind in Canada. MFEAT successfully convinced the Manitoba Government to implement a school-age ABA program, which was announced in June.
Media enquiries please contact:
Kevin Augustine, President MFEAT: 204-444-4169
Attached for your reference and Background:
1. Link to CTV News Clip: http://winnipeg.ctv.ca/servlet/an/local/CTVNews/20080727/wpg_autism_080727/20080727/?hub=WinnipegHome
2. MFEAT Brochure
3. St Amant ABA Program Brochure
4. Link to the March 2007 Report of the Senate Standing Committee on Social Affairs, Science and Technology, PAY NOW OR PAY LATER: Autism Families in Crisis : http://www.parl.gc.ca/39/1/parlbus/commbus/senate/Com-e/SOCI-E/rep-e/repfinmar07-e.pdf
Jamie Rogers
Director, Manitoba Families for Effective Autism Treatment
Director of Communications
(204) 792-6585
djamierogers@mts.net
-----------------------
-----------------------
In response to the Sudbury Star articles about the shortfall in funding to the northern Service Provider.
Province shortchanging families of autism: survey
Posted 1 day ago
Most city residents think the Ontario government could be doing more to help the province's autistic children and their families, an informal Sudbury Star poll suggests.
More than two-thirds of respondents to an Internet poll conducted by The Star indicated they believe the province should be providing more help to autistic kids and their families. The Star's week-long web-based survey asked the question, "Is the province doing enough to help families with autistic children in Ontario?"
As of Sunday evening, 83 respondents to the survey, or 68 per cent, called for the government to increase support for autism programs.
Another 24 poll respondents, or 20 per cent, said they believe the province is doing enough, while 15 respondents, or 12 per cent, indicated they were not sure.
A large majority of callers to The Star's telephone news line also argued the government should provide more resources for autism services.
"The province is not doing enough to help families with autistic children," said a woman who called The Star. "The proper intervention can make a big difference to these children in terms of their employability in the future and the province needs to help these families now."
"(Ontario Premier Dalton) McGuinty has promised many things to help out families with autistic children and has constantly reneged on this situation," said another caller.
The minority of callers who supported the province's current efforts included a man who argued increasing support for such programs must be placed in the context of tax increases.
"If we're going to put more and more money into these programs or any other programs, where is that money coming from?" he asked. "Ask people if they want their taxes increased first."
The Star's weekly Internet poll is not a scientific public-opinion survey and reflects only the views of participating respondents. The poll does not represent the views of The Star or Sun Media.
- - -
WORD FROM
THE STREET
Is the province doing enough
to help families with autistic children in Ontario?
"No, they're not. I don't think
they understand the importance of getting help for these children at a young age." "The more
money and care they give to autistic kids always pays off. They'll save money in the long run."
Visit us at: www.thesudburystar.com/mobileat:m. thesudburystar.com
"Absolutely not. We're not doing enough, it
seems, in education and areas like this that are not in the mainstream." "It's improving, but parents
need more support, school boards need more support and teachers need more support."
Asked on Sunday at James Jerome Sports Complex
"I'm not familiar with the funding situation, but kids with autism should receive as much help as we can give them." "I think they should do a lot more. It's
something they should expand. They're spending money on things that are a lot less important."
---------------------
This article came from the Kinora Miner News last week regarding this topic:
Funding shortfall
Children on autism waiting list will not be served
By Jon Thompson
Miner and News
Services for autistic children throughout the North are set to decrease by 50 per cent and Kenora’s care waiting list has been suspended.
Child Care Resources, the agency responsible for delivering Intensive Behavioural Intervention therapy throughout Northern Ontario , is not initiating treatment for those on waiting lists of six months to two years after they say the provincial government pulled promised funding.
The agency claims they were mandated by the Ministry of Children and Youth Services to provide funding to more children with the understanding that those costs would be compensated. In June, they were notified the funding had not increased and their resulting deficit would be an estimated $2.5 million at the end of this fiscal year.
Children currently receiving services will continue clinical therapy until the point where they can be discharged but will not be replaced.
In Kenora, there are nine children receiving service, six on the waiting list and 32 undergoing assessment, after which they would be placed on the waiting list if the treatment was deemed appropriate.
Maxine King, head of the agency’s board of directors, says none of those students will be served.
“We’re in a position where our backs are against the wall,” she said. “We’re in a deficit position now and every day we’re losing money because we’re not being funded to the degree that the government promised.”
The non-profit group covers a geographical landmass from its office in Sudbury to the Manitoban border. They sunk $122,000 in deficit by the end of their fiscal year on April 1 due to what King describes as broken promises when the provincial Liberals failed to transmit promised funding. The board, she points out, is legally responsible for its program’s fiscal solvency.
King is welcoming a governmental review of their funding, standing behind the program’s one-to-one child to professional ratio, the 20 to 40 hour a week treatment intensity, and maximizing early intervention. She points out the government is not saying the therapy or the program’s one-to-one ratio is wrong, but only that the funding can not satisfy the needs of the program.
The cause of autism is still not known.
The NDP Children and Youth Services Critic, Andrea Horwath has taken on the cause, hoping the government will reconsider. She called the move “irresponsible” and is calling on the province to “make good on their promise.”
She urged families and community members across the North to contact Minister Deb Matthews, Premier Dalton McGuinty and herself.
“Unfortunately, this government has a habit of not keeping their promises,” she charged. “Now community after community is speaking out against this and demanding fair treatment to protect this vital service to the North.”
---------------------------
From the Brantford Expositor:
Autistic boy faces wait for canine companion
Family raising funds to cover cost of training dog
Nolan O'Connor is a busy little boy who loves soccer, baking with his mom and anything to do with Thomas the Tank Engine.
But, like many autistic children, the four-year-old has no sense of danger and could easily dart into traffic if something catches his interest. A pioneering program that pairs autistic kids with specially trained dogs would keep him safe and give him a sense of independence.
But the wait for a canine companion is often two to three years.
"It would really make a difference for our family," said Nolan's mother, Anika.
She first heard about the National Service Dogs program through another parent at the local autism support group. The family went through a lengthy application process and was approved last February. But, right now, there aren't enough of the dogs to go around.
Tracy Lamouroux, a spokeswoman for the program, said it costs about $18,000 to breed, raise and train each dog. Dogs are provided to families free but donations to offset the cost would help shorten the waiting list.
"There's such a tremendous need," she said.
The program, established in 1996, was the first of its kind to train dogs to become safety buddies for children with autism.
The dogs -- either golden retrievers or labs -- are tethered to the children to slow them at curbs and prevent them from bolting into traffic at intersections. They also seem to have a calming effect on kids who are often bothered by new sights and sounds.
Lamouroux said "goldens" or labs are chosen for their intelligence and disposition.
"They're very sweet and snuggly. They never tire of affection."
They're also fiercely loyal. Lamouroux said many end up staying with their chosen families as pets once they get older and their "working days" are over.
The O'Connors have started an ambitious fundraising campaign to pay for the cost of training a companion dog. Although they know the money won't go directly towards a dog for Nolan, it will help the next child in line and, hopefully, reduce their wait.
"We know the pain of being on a waiting list," Anika said.
Right now, trips to the park or anywhere in public are difficult, because
Anika and her husband, Patrick, have to hold on to Nolan with an iron grip. Usually, it's easier to put him in a stroller, even though the preschooler weighs about 50 pounds.
Anika admits that with so much focus on keeping Nolan safe it's sometimes difficult to give daughter Henry
June, 6, the attention she deserves.
"I can be at her soccer game and I'm so focused on what Nolan is doing that I can't watch the game."
She also hopes that having a furry companion by his side will help Nolan sleep through the night. Right now, he is up about four times.
"The dogs are a constant, soothing companion," she said. "He could reach out and be reassured when he wakes up at night. Our hope is that it would help him stay in bed and get a good night's sleep."
The family has already raised $2,000 for the program. Friends who attended Henry June's sixth birthday party were invited to make a donation to National Service Dogs in lieu of a gift.
"It was amazing the support we received," Anika said.
The Noah's Ark Y preschool, which Nolan attends twice a week, has offered to help by hosting a giant garage sale Aug. 16. Anika is particularly touched by the gesture, since Nolan will be leaving the preschool and starting junior kindergarten at Ryerson Heights in September.
"I was overwhelmed," she said. The Paws for Nolan sale runs at
the Shellard Lane preschool from 8 a. m. to noon. Donations can be dropped off Monday to Friday during the day.
Anika said Nolan, who was diagnosed with autism at 23 months, has come a long way in developing his verbal and social skills, thanks to an intensive therapy program at Lansdowne Children's Centre. Having a canine friend would be another giant step forward, she said.
"I have very high hopes for the impact a dog will have on our life," Anika said. "I can't wait."
**************
From Taline
Forwarding this to my media contacts also. Please see the media release below and the attached information.
Note: Ontario has fallen behind the States by approximately 20 years in the availibility of publicly funded effective treatment and education for preschool and school-aged children wtih autism. Our neighbours in Manitoba are now also ahead of Ontario.
Taline
------------------------------------------------------------------------------------------
MANITOBA FAMILIES FOR EFFECTIVE AUTISM TREATMENT (MFEAT) WELCOMES NOVA SCOTIA FAMILY FORCED TO RELOCATE TO MANITOBA TO ACCESS PRE-SCHOOL AUTISM TREATMENT PROGRAM
29 July 2008
FOR IMMEDIATE RELEASE
MFEAT welcomes to Manitoba Dr. Leif Sigurdson and his wife Dr. Leanne van Amstel, parents of a child with Autism Spectrum Disorder (ASD) and medical migrants from Nova Scotia. As reported by CTV News last Sunday the family made the drastic decision to leave their careers in Halifax to access treatment for their three-year-old son, who was diagnosed with ASD a year ago. Their son will receive 35 hours of therapy per week in St. Amant's Applied Behavioral Analysis (ABA) program. It is unfortunate the family felt forced to relocate for sake of their child, but as Manitoba residents they will finally have access to the treatment their child needs to develop, while the province also gains two highly specialized medical professionals.
The disruption in the lives of this new Manitoba family is the reality facing many families caring for a child with ASD across Canada. While ASD is a serious neurologic condition of unknown cause, decades of studies have demonstrated that 25-35 hours of ABA per week significantly improves the cognitive and communicative function of children receiving it. The American Academy of Pediatrics, in its 2007 Clinical Report on managing ASD has written, “The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research … Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance …”.
Jamie Rogers, MFEAT’s Director of Communications can relate to the cross-country move made by the family, “When our two boys were diagnosed with ASD in BC in 2005 we were facing a debt of $80,000 per year to secure 35 hours of ABA per week. So we decided to move to Winnipeg to enrol in St Amant’s program. We learned of other out-of-province families in the program who waited tens of months without services following diagnosis or who were offered nothing at all. We are grateful to MFEAT for fighting to get the St Amant Pre-School ABA program in place, which has paid off enormously for our kids. No parent of a child with another serious medical condition has to move provinces or go bankrupt to obtain treatments that are proven effective, so why those with ASD? There is a Senate Standing Committee Report telling the government that families with an ASD child in this country are in a crisis that needs a national response, but it collects dust while our children and families endure major hardships.”
Founded in 1997, MFEAT is an advocacy and support group for families with a child, sibling, or loved one diagnosed with Autism Spectrum Disorder – a neurological condition that affects 1 in 150 children and has no known cure. Following years of negotiation with MFEAT, in 2002 Manitoba introduced a permanent pre-school ABA program for Manitoba families, the only one of its kind in Canada. MFEAT successfully convinced the Manitoba Government to implement a school-age ABA program, which was announced in June 2008.
Media enquiries please contact:
Kevin Augustine, President MFEAT: 204-444-4169
Attached for your reference and Background:
1. Link to CTV News Clip: http://winnipeg.ctv.ca/servlet/an/local/CTVNews/20080727/wpg_autism_080727/20080727/?hub=WinnipegHome
2. MFEAT Brochure
3. St Amant ABA Program Brochure
4. Link to the March 2007 Report of the Senate Standing Committee on Social Affairs, Science and Technology, PAY NOW OR PAY LATER: Autism Families in Crisis : http://www.parl.gc.ca/39/1/parlbus/commbus/senate/Com-e/SOCI-E/rep-e/repfinmar07-e.pdf
Jamie Rogers
Director, Manitoba Families for Effective Autism Treatment
Director of Communications
(204) 792-6585
djamierogers@mts.net
From a listmate
Surgeon Heads West With Family
Doctor says 'inadequate resources' for his autistic child reason for move
By Chris Lambie, thechronicleherald.ca. tinyurl.com/56axod
A reconstructive plastic surgeon is leaving Nova Scotia because he can’t get adequate treatment for his autistic child.
Dr. Leif Sigurdson took the unusual step of placing an ad in Saturday’s Chronicle Herald explaining his departure.
"I am leaving Nova Scotia due to inadequate resources and services for children with autism spectrum disorder in this province," Dr. Sigurdson wrote.
"I sincerely regret the inconvenience this will pose to the 1,117 patients on my waiting list."
Dr. Sigurdson, who could not be reached for comment, says in his ad that he made arrangements to transfer referrals to the remaining three plastic surgeons at the QE II Health Sciences Centre.
Dr. Sigurdson specializes in breast reconstruction, hand surgery, burns, craniofacial trauma and microsurgery.
"He’s a talented surgeon," said his neighbour, Bruce Roald. "I know a lot of people who have done reconstruction from him. It’s a real shame that we’re going to lose his capabilities here."
Dr. Sigurdson has a young son with autism, Mr. Roald said.
"The son is responding well to treatment, but the program in Nova Scotia only allows 12 hours a week and the child needs much more than that," said the neighbour.
"If he goes to Winnipeg, which is where he’s going, he’ll get 30 hours (a week)."
The surgeon’s son is around three years old, Mr. Roald said.
"He’s just at the age where it could make a big difference and I think he’s concerned about that, and rightfully so."
Dr. Sigurdson’s wife recently completed her studies in radiology, Mr. Roald said. "She’s also a medical loss to us."
Mr. Roald said he’s "absolutely certain" his neighbours would have stayed in this province if they could have found adequate care for their son.
"She is a native Nova Scotian and he was clearly trying to build a career and a life here."
Health Minister Chris d’Entremont said "we don’t want to lose any surgeon for any reason," but he’s sure the Capital district health authority will do its best to fill the vacancy created by Dr. Sigurdson’s departure.
Services for children with autism have been growing "leaps and bounds" in Nova Scotia since starting three years ago, the minister said.
"Do we have enough services yet? No. But ultimately I think that the acute care system takes an awful lot of money to run and it doesn’t leave us a lot of money left over for autism. So I think we’re doing pretty well. We need to do a lot more."
The province will spend about $4 million this year on autism treatment, he said. "Ultimately, we do want to add more dollars as years go by."
+ Read more: tinyurl.com/56axod
*******8
Google alert
http://www.lotwenterprise.com/ArticleDisplay.aspx?e=1133066
Autism program cutbacks raise local concerns
rollback in services from Sudbury-based Child CaResources represents the local portion of a 50 per cent service cut throughout Ontario’s North
Posted By Jon Thompson
Posted 10 days ago
The waiting list for programs serving Kenora’s autistic children was suspended last week, blocking the initiation of treatment for six youth and 32 more potentials undergoing assessment.
The rollback in services from Sudbury-based Child Care Resources represents the local portion of a 50 per cent service cut throughout Ontario’s North.
The agency said it received the green light from the Ministry of Child and Youth Services to expand its programming with the understanding that funding would be forthcoming. By the end of the last fiscal year, they had fallen $122,000 into deficit spending and without the “promised” funding increase, they were set to land $2.5 million in the red at the end of the current year.
The ministry responded by announcing an immediate funding review to be completed by Aug. 7, which was welcomed by the agency whose programming offers a 20 to 40 hour a week program called Intensive Behavioural Intervention therapy with a one to one youth to support worker ratio.
Gerry and Kim Cariou are local parents of an autistic child who entered the program in 2001 and were formerly activists in the now-defunct local chapter of the Ontario Autism Society. While they agreed with the agency that autistic programming has been critically underfunded, they welcomed the investigation.
“Our family, based on what we’ve seen, we could see a review of how some funds are used with the goal of putting more money toward programming and less to administration costs, which we think are too high,” said Gerry Cariou.
They spoke highly of the staff’s dedication but called for an agency office based either in Thunder Bay or further into the Northwest to respond to local needs in a flexible manner.
“I honestly don’t think they know how to run the program in the Northwest,” said Kim Cariou. “They’ve done well in Sudbury but no one comes down to this end. We did have a strong program but anyone who is advocating strongly here has had to leave.”She recalled the beginning of her son’s treatment when there was a single person from Red Lake to Emo to the Manitoba border, calling this week’s human resource cutbacks “rolling back nine years.”
She insisted that under the ideology of the program, modeling must be performed by experienced caregivers who are familiar with the children. She then proceeded to list webcams, a lack of OHIP coverage, travel expenses for Sudbury-based care for the sizeable region as major and avoidable expenses, paralleled by the removal of staff for advocating for program alterations to fit the unique needs of the region’s clientele.
Kim Cariou revealed plans to start an unaffiliated support group in late September to advocate, learn and share with families and caregivers enduring difficulties with all forms of disability. She can be reached at kcariou@sympatico.ca
The head of the agency’s board of directors, Maxine King, recognizes the enormous geographical area they service and highlights the difficulty in getting appropriate psychological support for the program. She noted the organization has been pushing to bring a psychomotorist to the Northwest and pointed out that air transport takes a great deal of resources.
Continued After Advertisement Below
She admits the current government has put more money into autistic services than any administration in the province’s history but that they have reached out to more youth under the impression that funding would be coming that never arrived.
“We’re in a positon where our backs are against the wall,” she said. “We’re in a deficit position now and every day we’re losing money because we’re not being funded to the degree that the government promised.”
Minister of Child and Youth Services, Deb Matthews, is reserving comment until the funding review is complete.
Article ID# 1133066
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Friday, August 8, 2008
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