August 26th – September 12th 2008
Alliance for families with autism
Visit
www.autismnewsarticles.blogspot.com
to read archived mail
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From a Listmate
September 12, 2008 .
Autism Update
Special to “Access Now” – The Election Edition
By Andrew Kavchak
During this federal election campaign it is really important for all Canadians who are concerned with healthcare issues and the treatment of disabled people to reflect on the Conservative record over the past three years and to consider the lack of relevant Party platforms going forward. The Autism file provides plenty of food for thought and necessitates corresponding action.
Autism treatment is not available under Medicare in any province. The B.C. families in the “Auton” case claimed discrimination and won in the B.C. courts. However, the Province appealed and all provinces and the federal government intervened in the Supreme Court of Canada hearings to deny kids with autism access to treatment under Medicare, notwithstanding the Charter’s guarantee of equality. The SCC decided in November 2004 that the matter of whether to cover the core healthcare needs of Canadians with autism under Medicare is entirely up to the legislatures.
The autism community has been lobbying provincial governments for years to address this huge gap in healthcare. For years they have also been asking the federal government to recognize a crisis across the country, demonstrate some leadership, convene a meeting with the provinces, put some money from 11 consecutive years of budget surpluses on the table, and negotiate a National Autism Strategy that would see autism treatment provided under Medicare pursuant to some national standards. The federal government has also been asked (though the tabling of petitions, etc.) to amend the Canada Health Act to include autism treatment in Medicare so that the provinces could no longer discriminate against those with autism.
At the time of the SCC decision the Paul Martin Liberals were in power. The fact is that they did nothing for autism. During that time many Conservative MPs attended autism rallies and press conferences on the Hill and used the autism cause to criticise the Liberals. Local Ottawa opposition Conservative MP, Pierre Poilievre, even wrote an article in The Hill Times in which he clearly stated that the Canada Health Act should be amended to include autism treatment in Medicare. However, once in power, the Tory Health Minister, Tony Clement, began the first nine months of his tenure by sending parents like me useless letters telling us that he was sorry our kids suffered from autism, but that it was not his business and entirely a provincial matter. How could he write that right after an election in which the Tories campaigned on a National Cancer Strategy? How can the jurisdiction argument be relevant for one medical problem and not another?
However, on November 21, 2006 , just one day before a major autism rally on Parliament Hill, the Minister suddenly held a press conference and began by stating that “the autism situation is now so serious, that doing nothing is not an option”. Regrettably, that is exactly what he did. Clement announced a five-point autism plan that included a website, a symposium, and asking the Public Health Agency of Canada to consider whether they could maintain some surveillance of the autism situation. These measures are wholly inadequate and have accomplished nothing noteworthy.
Once in opposition, the Liberals suddenly saw the political value of using the autism file to score some points. Former Liberal Cabinet Minister Andy Scott tabled a Motion for the creation of a National Autism Strategy. The House of Commons passed Motion M-172 on December 5, 2006 . However, Motions are not binding and they have done nothing to implement it. Not one cent was assigned to it in any subsequent budget.
Similarly, Liberal Shawn Murphy tabled a Private Members’ Bill to create a National Autism Strategy. If passed, this would have become law and forced the government to actually do something. Regrettably, the Tories and the Bloc ganged up to kill Bill C-304 on February 21, 2007 before it even made it to the Committee stage for review after second reading. In a show of two-faced hypocrisy, Pierre Poilievre MP was among those who voted against the Bill, which would have done precisely what he previously publicly wrote should be done to help those with autism.
During this time, the Senate Standing Committee on Social Affairs was holding hearings into the question of funding for the treatment of autism. Senator Jim Munson has been a leading advocate for Canadians with autism on the Hill and this inquiry was thanks to his efforts. On March 29, 2007 the Committee issued its report titled “Pay Now or Pay Later” in which it recommended the creation of a National Autism Strategy. When Parliament resumed after the summer recess the autism community waited to see what would be the Government’s response. On October 17, 2007 Clement’s response was tabled in the Senate. In a nutshell, he completely ignored the recommendations of the committee. The reply did not even include the words “National Autism Strategy”. The Conservative government will not do anything for Canadians with autism and they do not see it as being their role to demonstrate any leadership with the powers and resources at their disposal to help improve the lives of Canadians with autism or to address the discrimination in Medicare.
The NDP have several MPs who are sensitive to the plight of Canadians with autism. In particular, Peter Stoffer MP has been one of our greatest advocates on Parliament Hill for years. Stoffer has tabled numerous Bills in the House of Commons. Regrettably, they have not made it to debate. Similarly, while the NDP have talked a lot about a disability rights statute, to my knowledge they have not tabled or publicly circulated any draft Bill on the issue so far.
In the U.S. the federal government recently passed the “Combating Autism Act” which poured $1 billion into autism detection, treatment and research. During his nomination acceptance speech, John McCain actually mentioned autism. In Canada , it is a different story as most politicians would rather adopt the ostrich approach to dealing with autism.
During this election, please ask the candidates in your riding whether they are prepared to commit to moving forward with the development and implementation of a meaningful National Autism Strategy that would finally see autism treatment covered by Medicare in every province and whether they would be prepared to resort to legislation ensure that it happens. Please ask them to put their position in writing. Then make their replies public and let everyone know where the candidates stand so voters can take it into account on election day. At least one autism organization has stated that it intends to be active in this election. If you want to contribute, contact Families for Early Autism Treatment (FEAT) of B.C. at www.featbc.org.
What happens to Canadians with disabilities is important. If the weakest and most vulnerable in our society can be manipulated, abused, abandoned and deprived of their equality rights, the strong and healthy should realize that it is just a matter of time before the same happens to them!
From a listmate
Letter to the Editor of Globe & Mail September 3rd, 2008
Re: Alex
Our two children blessed us with 5 grandchildren, all physically healthy. Thank god.
Since our daughter worked in the medical field she was able to get some very good references too mediacl opinions, when she started to notice personality changes in Alex just after he reached the age of 1 year old. Prior to Alex's 2nd birthday he was diagnosed with Autism.
After a follow up hearing test suggested that Alex get in for a consultation in "word play" immediately. Many steps were taken before Alex was put on a waiting list for the Provincially Funded IBI Therapy.
In the mean time our daughter and her husband hired 5 therapists to work 5 days, 40 hours a week to work with Alex. This wemnt on for several months with positive results.
Finally 16 months after Alex was diagnosed with autism, Trinna got a call from CCR of Sudbury for Alex to attend the provincially funded IBI Therapy Program.
The IBI program has worked and i am sure it will keep helping Alex if he is allowed to stay in it until he reaches the appropiate level, prior to entering the public school system.
Not the almighty McGuinty dollar level.
The sacrifices that our daughter and her husband along with their other 2 children have made, has been amazing (to many to list in this letter) just to help Alex get the most out of life.
Trinna had to quit her good paying job at the MDS Lab in Sudbury and take a in-home phone operators job just so she could be flexible enough to drive Alex to and from the daily IBI Therapy Classes.
It is just amazing how much Alex has progressed over the past 2 years. The one on one therapy has been the trick to Alex's learning. One thing that I noticed is that Alex does not mingle with others for more than a few moments. Alex needs more training in sociallizing skills.
With all the terrible broken McGuinty Liberal Promises and Funding Cuts, we have been just waiting for the news that Alex will be pushed into the public school system, without the one on one therapist support that he needs.
Well that day has come, while visiting our daughter on Tuesday, she got the call to meet with CCR officials on Thursday for the to evaluate Alex and see if they will be putting him into the public school system.
Alex still has some social/private issues that need to be dealt with prior to being placed in the public school system without his therapist. I am sure his mother will be bringing up several of those issues at the evaluation meeting on Thursday September 4th, 2008 @ 1pm
My opinion is that Alex is not ready for the present public school system, he might be ready if he had his therapist available in his class room, to deal with the private/social issues that autistic children may present, one on one. As the present public school teachers do not have the time or the traing needed to deal with Autistic Children in their special moments.
The attachments show some of the recent broken funding promises.
I am sure taht CCR will just have to start pushing children through the system, based on the funds available and not on the ability of the children> Is this phone call just a huge coincidence or is it based on the funding cuts that the Liber Government has handed down to CCR over the past few months???
My fear is that the latter is the real reason!!!
While watching the local CTV news last night, they were talking with the Principal of a Sault Ste Marie, Ontario. Pinewood Elementary School. The principal said that there were 225 students registered 4 years ago at this school and now there are only 145 students. Also stated was that 3 teachers had to be layed off and several rooms are now empty in this school.
Forget the old politics of the school boards and educate todays children, the buildings could be full again, and the educators could be trained to educate Autistic Children.
Call the teachers or call them therapists, just get the job done.
Can our government represenatives not come up with a simple plan to use these resources and help educate Autistic Children. The cost of renting basements & industrial buildings could be eliminated and put into educating the Autistic Children in the empty public schools. Our country learned many years ago the "Attic Children" was not the best way to deal with the children of those days. Why would it be any different now a days???
"Train the teachers and use the empty class rooms"
Other countries and provinces across this great country have done a great job in dealing with Autistic Children, the province of Ontario has fallen behind, under the leadership of Dalton McGuinty.
My belief is the Mr. McGuinty has chosen to spend a huge amount of money with lawyers to fight the parents of Autistic Children and now he will not back down as he seems to have dug his heals in.
Who is gaining from all the money that the Ontario Liberal Government is spending and I wonder what Mr McGuinty's profession was prior to being Premier of Ontario???
Our province Ontario has lost many professional adults (Doctors, Foot Ball Players, Ministers etc...) to other provinces/countries that offer funded IBI/ABA therapy for Autistic Children.
When will our leaders wake up and smell the ________?
Autistc Children need the help of all our leaders NOW!!!
Globe and Mail
Please use the power of the media to help Autistic Children. Just because autism is less visible and less understood our leaders feel they can get away with partially funding its treatment.
Minister Clement says it is the provinces responsibility and we obviously know what Mr McGuinty says about autism during the election campaign and what he does after he was elected.
I say that it is Canada's responsibility (forget the politics) as by the time the politicians agree to anything, these children will be in provincially funded homes for the rest of their lives.
What a cost this will be, socially and financially to our country.
All children in Canada need and deserve the best possible education that can be provided, so that they can be self supportive in their adult lives, PERIOD!!!
If a child had diabetis, cancer or a physical condition that put them in a wheelchair, there would be no question about Canada providing them with the treatment they need and deserve. Why is it different for Autistic Children of Canada???
The federal election is here, hopefully the media can hold somebody, some party accountable for Canadian children with Autism during this Federal Election.
Minister Clement knows how much each and every vote will mean during this election.
I am willing to do whatever as a retired/injured worker to help Autistic Children in Ontario.
Just ask!!!
Thank you
Dennis Lendrum
182 Syroid Street
Espanola, Ontario.
P5E 1G4
(705) 869-0164
dennis@rcsasnow.com
This is a copy of the exact letter that I sent out to the Globe and Mail along with many politicians and the representatives of CCR.
I got a great phone call from my daughter at supper time telling me that CCR will not be pushing Alex into the public school system at this time.
Dennis
Upcoming Workshop: Sudbury AO
POSITIVE BEHAVIOUR INTERVENTION:
A Practical Approach to Using Positive Behaviour Supports with Individuals with Autism Spectrum Disorder
Guest speaker: Ed Mahoney
Saturday September 27th 2008
10:00am-4:00pm.
This course focuses on practical and proven ways to minimize anxiety and crisis-related behaviours in individuals on the autism spectrum, including non-violent crisis intervention. Through an understanding of how individuals with autism spectrum disorders experience their world, participants are encouraged to explore ways to shape environments that reduce anxiety and promote growth, based on the statement: “To the extent that crisis behaviour is an issue, all aspects of an individual’s environment must be open to change”. Ed Mahoney
LOCATION: Child Care Resources Building Conference Room B, 662 Falconbridge Road, Sudbury.
FEE: (includes lunch) $20.00 Autism Ontario Members, $25.00 non- Members. Workshop scholarships are available.
REGISTRATION: Voicemail: 222-5000 ext 2685 or e-mail: sudbury@autismontario.com
VIDEOCONFERENCING: to Espanola/Gore Bay available based on demand.
CHILD CARE: is available for the day. Please register in advance, as spaces are limited.
ABOUT OUR SPEAKER: Ed Mahoney is a Special Education Resource Teacher with the Hamilton Wentworth Catholic School Board whose role it is to support students and teachers in the classroom. He is also an Instructor at Mohawk College in Hamilton. Ed is an Associate Faculty Instructor with Conestoga College in Kitchener, Waterloo, Guelph and Stratford where he teaches a course entitled “Approaches to Autism” as part of the Educational Assistant Program. Ed speaks regularly at various provincial workshops and seminars, and runs a summer camp and summer respite programs for individuals with high needs Autism Spectrum Disorders. For reviews & more information regarding this workshop view the Spring 2007 edition of Autism Matters (page 21), available for viewing on line at www.autismontario.com
AO News
Membership = Free Baseball Tickets (a limited time offer)
An exciting limited time offer for those who renew or become new members of Autism Ontario. We have 50 tickets for the Thursday Sept. 25th Blue Jays vs. New York Yankees at the Rogers Centre. New members or renewals can receive 1 free ticket(value $49) to the game per membership purchased. Additional tickets can be purchased for $49 each.
These will be distributed on a first come first served basis.
Call Ethel at 416-246-9592 x 224 to process your membership and reserve your tickets.
Bill 77 – Services for Persons with Developmental Disabilities Act, 2008
Here is the link on our website for Autism Ontario's submission re: Bill 77 – Services for Persons with Developmental Disabilities Act, 2008, and the Autism Ontario letter that has been sent to all Ontario MPPs about it. Also include is a link to the Helen Henderson article (Toronto Star) about the same issue http://www.thestar.com/article/477213.
The third reading of Bill 77 will likely be as early as mid- September and may be passed as early as October 1st. The government is listening right NOW so September is the time to talk to them about the future. Please use these materials to write or visit your local MPPs and Ontario leaders about this important proposed legislation and Autism Ontario's specific concerns!! (it is also a great way to remind them that October is Autism Awareness Month).
In partnership with Autism Ontario, a research team from the Centre for Addiction and Mental Health is interested in looking at the experiences of people with ASD and their families, when the family member with ASD has a crisis. A crisis can be any time when problems get very bad, or when you have to put a lot of effort into keeping things from getting out of control. Autism Ontario will share the results of the survey with the team to inform their research and to help justify the importance of funding this project. There are only 7 questions.
PLEASE NOTE: This is anonymous. There is no way that Autism Ontario can find out who is responding.
To participate, please use this link: http://www.surveymonkey.com/s.aspx?sm=p74Kk3paIi91s0lWu9s0Fg_3d_3d
Families take Autism Class Action to Supreme Court of Canada
Final documentation in leave to appeal to be filed on Wednesday
August 26, 2008 – Toronto, Ontario – The plaintiffs in the Ontario Autism Class Action Lawsuit are taking their case to the Supreme Court of Canada, continuing their battle for full and timely access to effective treatment and education for children with autism. In their application to the Supreme Court, with final documentation to be submitted on Wednesday, August 27, 2008, the families involved in the class action are requesting leave to appeal a decision of the Ontario Court of Appeal, aspects of which threatened the lawsuit.
"It speaks to how important the case is, that we're going as far as the Supreme Court," said Taline Sagharian, one of the parents participating in the suit. "Families of children with autism in Ontario today are forced to choose between prohibitively expensive private programs and a public school system that refuses to allow appropriate services in the classroom. It's a terrible situation."
The families are seeking to have the Supreme Court consider two main issues arising from Justice Maurice Cullity's original decision, handed down in May 2008 and upheld, with some changes, by the Court of Appeal. First, they are asking to be allowed to seek damages under the Charter of Rights – a crucial point of law for people whose Charter rights have been breached by government and who are, as a result, out-of-pocket thousands of dollars.
Second, on a more technical front, they are seeking to ensure their ability to argue an equality analysis that rests on a comparison between access to public education for children with autism, and that of non-disabled children. They argue that children with autism are specifically discriminated against in ways no other students in Ontario are.
The class action was filed in 2005 by five families, representing six children with autism, against the province and seven provincial school boards. The families allege that the educational authorities have failed to adequately provide or fund crucial ABA/IBI (short for Applied Behaviour Analysis and Intensive Behavioural Intervention) treatment in the school system or without excessive and detrimental delays. They are seeking a change to current autism services, as well as compensation for the expenses they have been forced to incur to place their children into private therapy or education programs.
"In the United States and elsewhere in Canada, children with autism are able to access ABA/IBI through the education system," said lawyer David Baker, who represents the group of families. "Ontario stands alone in forcing families to choose between therapy and public education for their children."
For the families, it's been a long and difficult battle, with more hurdles ahead. If the Supreme Court agrees to hear the families' appeal, the full process would take approximately one year, after which the case would return to the Ontario Superior Court for certification as a class action.
But the families say they are prepared to fight on as long as it takes. "The current situation for families of children with autism in Ontario is really untenable," said Ms. Sagharian. "People are taking out second mortgages, or collapsing their RRSPs to ensure their kids' needs are met. Others have emigrated to the U.S. or other provinces in Canada - they're known as the 'autism refugees.' There's just a desperate need for change."
For More Information or for Comment Please Contact:
Taline Sagharian, Plaintiff
416-522-8426
t.sagharian@sympatico.ca
David Baker, Counsel
416-533-0040 ext. 222
dbaker@bakerlaw.ca
Faisal Bhabha, Counsel
416-533-0040 ext. 260
fbhabha@bakerlaw.ca
Picture Exchange Communication System (PECS)Training
is coming to Ottawa, ON!
November 3 & 4, 2008
For more information or to register: Phone: 416-546-PECS (7327)
Fax: 416-546-PEC1 (7321) Website: www.pecs-canada.com
Julie Koudys, Ph.D Candidate and Clinical Director of Pyramid Educational Consultants Inc. is coming to Ottawa to teach implementation of the PECS system. Don't miss this great opportunity to learn the PECS system from the premier trainer of the PECS system in Canada to ensure that you have all the skills needed to take on the challenges ahead!
The Picture Exchange Communication System...
• is a unique augmentative/ alternative training package that teaches children and adults with autism and other communication deficits to initiate communication
• does not require complex or expensive materials
• is successful with children, adolescents and adults
• is appropriate for use in educational, therapeutic/clinical, recreational and home settings
• is currently the most widely used intervention with individuals with Autism Spectrum Disorders worldwide
Training opportunities and products focus on the initiation of communication and the design of effective educational environments utilizing structural and instructional elements. Pyramid offers a unique blend of broad spectrum applied behavior analysis in conjunction with the development of functional communication skills - emphasizing the individual needs of each learner. We are the premier source of training for the Picture Exchange Communication System (PECS).
Who Should Attend?
• Anyone who would like to learn to implement PECS with individuals without a functional communication system, including those who wish to refine their PECS teaching skills
• Speech/Language Pathologists and Communication Disorders Assist
• Teachers & Educational Assistants/Specialists
• Home & Centre-Based Therapists
• Behaviour Analysts
• Psychologists and Social Workers
• Occupational Therapists
• Program Administrators
• Parents and Family Members
Please see attachments for registration information or visit ourwebsite for more information!
Kaitlynn Dodge
Pyramid Educational Consultants of Canada, Inc.
PO Box 74515, 270 The Kingsway
Etobicoke, ON M9A 3T0
Phone: 416-546-PECS (7327)
Fax: 416-546-PEC1 (7321)
www.pecs-canada.com
From Nancy’s List
Two flyers are attached to this mailing. These are the flyers for the Autism Awareness Concert by Barney Benall in Newcastle on Sunday, Sept 28th, and the other Barney Benall concert which is a fundraiser for Stefan Mariniou's family happening at the Hugh's Room on Dundas St West, in Toronto on Tuesday, Sept 30th.
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From: http://www.stoneycreeknews.com/opinions/article/141177
Lack of autism funding is a shame
By ANDREA HORWATH
Columns
Aug 29, 2008
The idea of denying children the therapy that helps improve their lives and diagnosed conditions is unthinkable. But that's what is happening in Dalton McGuinty's Ontario with regards to children with autism. The lack of funding for autism services is a provincial shame.
Autism Spectrum Disorder (ASD) is one of the most common developmental disabilities, usually appearing during the first three years of life. It is a serious neurological disorder affecting children and their brain development in the areas of social interaction and communication skills, often resulting in severe and pervasive impairment. The prevalence rates in recent years have been increasing, now with 1 in every 150 children diagnosed with ASD in Ontario alone. The good news is that early diagnosis and intervention programs have dramatically insured positive outcomes for children immediately and into adulthood.
After hearing from the Liberals in the 2003 election that children with autism would receive treatment regardless of their age, families today across our province are learning the hard way that this government's talk is cheap.
Instead of putting sufficient funding behind its promise, the government created a waiting list, where children can languish for years before a coveted space opens up in a treatment program. But with the crisis in funding and the absence of a long-term strategy to deal with autism spectral disorder, families lives have been turned upside-down. Children with autism benefit markedly from one-on-one therapy called IBI/ABA (intensive behavioural intervention). Without it they suffer.
Most families can't afford the amount of treatment their children need. Some have mortgaged their homes. Others hold community fund raisers. The government's pledge to fund autism treatment was supposed to end all this.
Now here's the reality: Regional centres all over the province are in deficit and have been forced to tell waiting families they can't provide further service. When vacancies become available, regional centres don't have the financial resources to fill the empty spaces with children from the long waiting list.
Imagine a parent like Paula Barrett, who played by the government's rules, waited 25 months for her son to reach the top of the treatment list. Days before the boy was to begin publicly funded IBI treatment, the family received a letter from the regional service provider containing the bad news. The centre was out of money and the youngster was out of luck. Finally he was at the top of the list only to be let down.
Lack of funding and a deficit-ridden program deprived this youngster and hundred of others of the opportunity to come out of the shell autism puts them in.
Families dealing with autism need to be able to plan for their child's future. That's impossible with the on-again, off-again nature of the McGuinty government's approach.
The not-for-profit Child Care Resources, which serves already under-serviced Northern Ontario communities, estimates its funding shortfall would result in reduction of up to 50 per cent and a severely limited capacity in their Autism Intervention Program. Parents are being warned to expect a two-year wait to begin their child's treatment.
The Liberals have closed the door on essential supports for children with autism and their families in Northern Ontario and Southern Ontario. With much fanfare they announced a summer camp for children with autism. But when summer rolled around, they cut off families from the fund that was supposed to provide a camp inclusion worker for children with autism. Moms and dads were blindsided by a new catch - if they didn't put their child in camp in July, they lost out because there was no funding for inclusion workers for August campers.
Families have actually left Ontario altogether for Alberta where programs are fully funded. That western province and its comprehensive funding for autism attracted a world autism expert from Ontario. More could follow.
We have a choice to create the kind of Ontario we want. In my Ontario, autism treatment would be fully funded and the children's needs addressed. I believe there should be an immediate increase to the funding of autism services so that Regional Centres can respond to the needs of these children.
To hold back on funding while children and families continue to suffer and struggle is inexcusable foot-dragging.
Each day that children with autism languish on waiting lists and are denied access to services is another day that their potential for progress and success is thwarted by the McGuinty government's inaction.
Andrea Horwath is the MPP for Hamilton Centre and Ontario's NDP Autism Critic
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Friday, August 29, 2008
THE EDMONTON SUN
Hospital gives boy adult meds
MICHELLE THOMPSON, SUN MEDIA
Bad luck continues to loom over the family of an Edmonton autistic
child.
This time, little Keegan Delaney's stepfather says he lost his job after
taking time off work to care for his sick boy.
Craig Winsor said the trouble began last Tuesday, after he and his wife
took Keegan to the Royal Alexandra Hospital looking for help calming
their temperamental child.
"Keegan was being Keegan," Winsor said. "We were having problems with
his behaviour."
A nurse gave the little guy meds to help his family cope - but the
trouble is, they gave him the wrong ones, Winsor said.
"They gave him the adult dosage and he's only five," he said. "The
effects could have been very catastrophic. Fortunately, Keegan just had
a very, very long sleep."
Capital Health spokesman Rob Stevenson acknowledged medical errors
sometimes happen in busy hospitals, but said staffers work to ensure
they occur as infrequently as possible.
"Patient safety is our No. 1 priority," he said. "From our perspective,
medication errors take up the largest part of adverse events in
hospitals.
"It's our goal to reduce our medication errors down to zero."
When mistakes are made, he said staffers follow a procedure to minimize
the consequences, and then take steps to ensure the same error isn't
repeated.
"The first thing that's done is examining the consequences of the
medical error," he said. "There are a lot of different policies for
ensuring medical errors do not happen.
"(But) nursing staff, medical staff are human," he said. "Mistakes are
made. We are very sorry."
After receiving the wrong medication, Keegan was transferred to the
Stollery Children's Hospital, where he remained until last Friday.
Sun Media obtained a copy of the doctor's note Winsor received, which
requests Keegan's family "be accommodated during this very difficult
time."
But Winsor said that simply didn't happen.
Equipped with the letter, he told his boss he'd be spending the week
with his hospitalized son.
"Thursday, he decides to fire me while I'm in the hospital lying with my
son," Winsor said.
"I never called in Thursday.
"(My boss) expected me to call in even though I told him I'd be away for
the entire week."
Westcom Services, which employed Winsor for about two weeks, did not
respond to an interview request by press time last night.
But Winsor has since found another job with Canadian Natural Resources,
and he expects his employers there to be more accommodating.
"They seem to be more of a family-oriented company."
Earlier in the summer, the family made headlines after it says it was
booted from a Jasper campground after having run-ins with an employee
who was less than accommodating to Keegan's behaviour.
After that story ran, though, readers responded by offering the family a
free stay at another campsite.
ILLUS: photo by Robert Taylor, Sun Media Autism sufferer Keegan Delaney,
5, seen here with his stepdad Craig Winsor and mom Kianna Delaney, was
accidentally given an adult dosage of medication at a city hospital.
_______________________________________
Friday, August 29, 2008
THE DAILY GLEANER (FREDERICTON)
OPINION, Page: B7
If you're going to reach out, make it count
Re: Conservative MPs who have mailed flyers to residents of other
ridings across Canada
This letter was sent to Brian Storseth, MP for Westlock-St. Paul in
St. Paul, Alberta.
I was surprised to hear from you, an Alberta MP, in a House of Commons
mailout.
As a resident of Fredericton, N.B., I am used to receiving such flyers
from our MP, Andy Scott.
"Andy," as he is known by Frederictonians, has been an outstanding
representative for our riding and for a cause that is close to my
heart - the cause of autistic children and adults.
Your pamphlet did not address autism or any other major health issue
confronting Canadians.
Instead, you used your parliamentary mailing privileges to reach
across Canada in an attempt to stoke fear of crime in Canada by
sending a pamphlet featuring a picture of a young man, unshaven,
wearing an sleeveless undershirt slouched on a couch with a beer. I am
not impressed.
Since you did reach across this great county to communicate with me,
Mr. Storseth, I will let you know what does concern me as the father
of a 12-year- old boy with autistic disorder.
I ask that you encourage Prime Minister Harper to stop ignoring the
plight of autistic children in need of treatment across Canada.
Stop pretending that the federal government cannot use its tremendous
financial resources to ensure that autistic children, wherever their
parents reside in Canada, receive the evidence-based treatment they
need to live as full a life as possible. The Canada Health Act exists
despite jurisdictional concerns.
Mr. Storseth, since you have adopted me as a constitutent, I ask that
you encourage your party leader, Stephen Harper, to adopt a real
national autism strategy.
Send federal dollars to the provinces to ensure that every autistic
child receives treatment, regardless of their parents' postal address.
You have reached across the country once; you can do it again - for
autistic children.
Harold L. Doherty
Fredericton
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Please distribute widely…
A Call to Action to End Poverty
for People with Disabilities in Ontario
Imagine an Ontario where no one ever went hungry and where everyone was treated with dignity and respect…
Ending poverty is a complex task, but we believe that it can be done. The Ontario Government has announced that it will develop a poverty reduction strategy by the end of 2008. Public consultations are being held across Ontario. We want to make sure that people with disabilities who are living in poverty get consulted and are actively involved in efforts to end poverty in Ontario.
If you are a person with a disability, living in poverty or struggling to make ends meet, then we want to hear from you!
• What are the challenges you face?
• What ideas do you have on how governments can reduce poverty?
• What actions can we take for people with disabilities?
“Ending Poverty Workshop”
Date: Wednesday, September 17, 2008
Time: 11:00 am to 3:00 pm
Place: 188 Lowther Avenue – Walmer Centre – “Lower Hall”
(attached to Walmer Road Baptist Church)
Intersection: Spadina Avenue & Bloor Street West
Subway: éSpadina Station on Bloor-Danforth
Subway line is wheelchair accessible.
Lunch and tokens will be provided. Disability accommodations and child care will be provided as requested. This is a scent-free workshop.
Enrolment is limited. To register please call Theresa at 416-482-8255 ext 229 before Friday September 12, 2008.
Please indicate any disability accommodations you may need and whether you need childcare when you call.
Your ideas for ending poverty will become part of a report to government and the community to help build an effective poverty reduction strategy in Ontario.
This workshop is 1 of 10 organized by CAMPAIGN 2000 and the Income Security Advocacy Centre across Ontario, with funding from Metcalf Foundation.
Organized by: ARCH Disability Law Centre
----------------------
This was on the Canadian News Wire today:
Attention Business/Financial Editors:
Oral Tolerability of Cysteine-Rich Protein Isolate (Immunocal) in Autism - A Pilot Study
MONTREAL, Aug. 28 /CNW Telbec/ - Immunotec Inc. (TSX-V: IMM) announced
today the completion of an open-label clinical trial on the use of a
cysteine-rich protein isolate in children with autism. Ten children, 3-15
years of age with a diagnosis of autism or autism spectrum disorder (ASD),
were supplemented with a non-denatured whey protein isolate (Immunocal(R)).
Autism symptoms, behavior, side effects, and treatment adherence were
examined, as well as bowel flora. This preliminary study showed the majority
of autistic children were able to consume non-denatured whey protein isolate
(Immunocal(R)) without adverse effects. Changes in all behavioural parameters
showed positive trends but did not reach statistical significance because of
the small numbers of patients in this pilot study. The results will provide
the basis for a larger placebo controlled double blind study to test the
benefits of using whey protein isolate in the treatment of autism. (Kern JK,
Grannemann BD, Gutman J, Trivedi MH, Oral Tolerability of Cysteine-Rich Whey
Protein Isolate in Autism - A Pilot Study, Journal of the American
Nutraceutical Association (JANA), Vol. 11, No. 1, 36-41, 2008.)
Recent evidence suggests that many children with autism have low levels
of glutathione in their cells. Non-denatured whey protein can improve
glutathione levels in a variety of diseases and disorders; however, there are
anecdotal reports that children with autism may have a worsening of behavior,
gastrointestinal (GI) disturbance or related problems after the ingestion of
sulfur-rich compounds.
Principle investigator Dr. Janet Kern stated, "We're very optimistic
about these pilot results, it makes us very comfortable to pursue larger and
longer-term studies using this strategy."
Immunotec President and CEO Jim Northrop is pleased with these initial
results. "Completion of this pilot study will encourage researchers to move on
to the next step of studying the role and benefits of our cysteine-rich
protein (Immunocal) in children with autistic spectrum disorder. I am proud of
Immunotec's commitment to ongoing research and development that continues to
validate the confidence and quality in our products."
About Immunocal
Immunocal is a cysteine-rich protein isolate derived from non-denatured
whey protein. Immunocal(R)/HMS 90(R), is a dietary natural health supplement,
developed and marketed worldwide by Immunotec since 1996. Immunocal(R)/HMS
90(R) is a precursor of the major cellular antioxidant glutathione, an element
important in maintaining a strong immune system.
About Immunotec Inc.
Immunotec is engaged primarily in the development and marketing of
natural health products, dietary supplements, vitamins and personal care
products, many of which are manufactured on its behalf by third parties.
Immunotec's products are distributed and sold in the United States and Canada
through a network marketing system and in other countries through exclusive
distributorship agreements. Immunotec's investment in this study is another
manifestation of its ongoing commitment to research and development.
www.immunotec.com.
For further information: Media: John H. Molson, Vice-President, Research
& Development, Immunotec Inc., (450) 510-4450, Fax: (450) 424-9993,
jmolson@immunotec.com; Clare Malbon, R&D Dept., (450) 424-9992 Ext 2377
----------------------
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
-----------------------
A parent has put out two books, I have read the first book, and it is fantastic.
Thank you for interest in Autism Aspirations and my first book, Been There. Done That. Finally Getting it Right! I hope that you enjoyed it and that it was meaningful for you.
I am pleased to announce the arrival of my second book! One Step at a Time: ABA and Autism in the Classroom Practical Strategies for Implementing Applied Behaviour Analysis, was written in response to the new Ministry of Education’s ( Ontario ) policy regarding the use of the principles of Applied Behaviour Analysis for students with autism. Even if you don’t live in Ontario , Canada , the book offers a comprehensive, easy to read and practical look at applying the teaching methods that are most effective for student with autism.
Both books are now available as a bound copy! Just go to the website and you can purchase the book (either ebook or bound copy
ALSO
I will be attending the Summer Training Institute hosted by the Geneva Centre for Autism on the following dates:
On August 18 and 19 at Toronto August 21 and 22 at Barrie
Fairmont Royal York Horseshoe Resort Barrie
100 Front Street W 1101 Horseshoe Valley Road
Toronto, ON Comp. 10 R.R.#1
--------------------------------
This was in HealthZone:
New hope for Fragile X treatment
Joseph Hall
August 28, 2008
When Dr. Carlo Paribello's first two sons were diagnosed with a condition known as Fragile X Syndrome, he says it was as if there had been a death pronounced in the family.
Now in their teens, Nicholas and Benjamin Paribello are very much loved and alive, though they display many of the mental handicaps and autistic-like behaviours that mark the chromosomal ailment.
But thanks to research at the University of Toronto, there is new hope effective treatments for the most common form of inherited mental impairment in Canada may be in the offing.
In a study to be published today in the journal Neuron, U of T physiologist Min Zhuo says it may be possible to compensate for the key brain protein missing in Fragile X patients and reverse many of the symptoms they typically suffer.
"It shows that we can actually modify," adds Paribello, founder of the Fragile X Research Foundation of Canada. "Something that you thought was not curable, and not treatable, you (may be able to) actually change."
Zhuo says the research is the first to show the specific relationship between the disease and the key neurotransmitter dopamine. The discovery, he says, will almost certainly encourage clinical trials into drugs that could modify the disease's often debilitating symptoms.
These include hyperactivity, social-skills impairment, attention deficits, hyperactivity and an autism-like withdrawal.
"It will certainly encourage lots of researchers ... to use dopamine drugs in clinical trials," says Zhuo, who holds a Canada research chair in physiology at the school.
"This is an important piece of the pathway," says Paribello, whose experience with his sons' ailments led him to found the Brampton-based foundation. "It's not all of it, but it's a big chunk of it."
The disease affects about one in 2,000 males and one in 4,000 females, says Paribello, whose sons were 3 and 18 months when diagnosed. (Paribello's two youngest sons do not have the disease.)
He says, "You think, `Oh my God, mentally (challenged), sheltered work environment for the rest of their lives. Are they going to get married? Can they go to school? Can they take care of themselves?'
"All those images you have of your hopes and aspirations, they're gone. It's like a death."
The disease is caused by a mutation to the so-called FMR1 (Fragile X Mental Retardation 1) gene, located on the X chromosome. The mutation reduces or eliminates production of the gene's normal product, a protein known as FMRP. The protein plays a critical role in allowing dopamine to perform important developmental functions.
In particular, Zhuo says, by binding to key neurons in the forebrain, dopamine can activate the proper development of learning, memory storage, attention, decision-making capacity and motor functions.
In the absence of the FMRP protein, however, dopamine is unable to trigger these normal neural activities and the growth of these functions is severely impaired.
"Deletion of this protein is what caused the problem," he says. "Dopamine is still being released in patients, dopamine still binds to the receptor, but nothing is going on after that."
Using a mouse model that lacked the FMRP protein, Zhuo's team created a rodent version of Fragile X disease.
And by promoting – through various existing drugs – the production of natural neural proteins that play a role similar to FMRP, Zhuo says his team was able to rescue the developmental processes in the afflicted mice. These, he says, quickly regained many of the same cognitive and neurological functions of their normal peers.
Because dopamine is one of the most important neurotransmitters, controlling myriad cognitive, emotional and movement functions, there are many drugs already in human use that might improve its uptake in Fragile X patients, Zhuo says.
"It's possible we may find new indications for old drugs that we never looked at before and that we never thought would work (on Fragile X)," Paribello adds.
Health Reporter
---------------
This was on the Shafer Report, I am sharing it here as some advocates have been following the American advocacy on this matter:
Coverage for Autism Therapy Prompts State Mandates and Lawsuits Against Blues Plans
tinyurl.com/633wek
Reprinted from The AIS Report on Blue Cross and Blue Shield Plans, a hard-hitting independent monthly newsletter on business strategies, products and markets, mergers and alliances, and financing of BC/BS plans.
An explosion in the number of children diagnosed with autism has led to lawsuits against Blue Cross and Blue Shield plans and other carriers over health insurance coverage for controversial therapies. Concerns over autism therapy also have prompted several states, such as Arizona, Florida and Pennsylvania, to enact new autism benefit mandates, forcing Blues plans to revise coverage policies.
On July 1, the father of a 7-year-old with autism filed a lawsuit against Blue Cross Blue Shield of Michigan to force the insurer to reimburse about $8,000 paid for therapy, according to one of the family's attorneys, John J. Conway of Detroit. Another suit over autism therapy coverage was filed in April against WellPoint, Inc. subsidiary Anthem Blue Cross and Kaiser Permanente in California.
Autism is a baffling and costly developmental disability that affects about 1.5 million Americans, according to the Autism Society of America (ASA). The disorder is marked by impaired social interaction and communication, and engagement in repetitive behaviors. The condition is on a continuum of "autism spectrum disorders" that includes Asperger syndrome. Autism has become a hot-button issue as its prevalence has increased dramatically in recent years and as some critics have linked childhood vaccines to the condition. According to the federal Centers for Disease Control and Prevention (CDC) in Atlanta, the incidence of autism has almost doubled since 2000, now affecting about 1 in 150 American children. Autism cases in Michigan have skyrocketed from 4,700 in 2002 to 11,000 in 2006, according to CDC.
Treatment of autism can be expensive. The ASA estimates that the lifetime cost of caring for a child with autism ranges from $3 to $5 million.
During a hearing scheduled for Oct. 22 in the U.S. District Court for the Eastern Division of Michigan, Southern Division, the court will consider a motion to certify the Michigan Blues suit for class-action status. Certification as a class would broaden the suit "to represent other potential claimants in the same situation" as his client, explains Conway.
At issue in the lawsuits against the Blues plans is an intensive one-on-one therapy called applied behavioral analysis (ABA). A full course of ABA therapy costs upwards of $90,000, according to Conway.
Conway says the Michigan Blues plan sent hisclient's family "a pretty bare-bones, perfunctory denial that says, 'Our in-house people think [ABA] is experimental.'"
Michigan Blues spokesperson Helen Stojic declines to comment on the specifics of the lawsuit filed against the plan. But, she says, "Blue Cross Blue Shield of Michigan understands the concern and is very sympathetic to the challenges of families dealing with autism. However, the push to expand employer insurance coverage — through the courts or legislation — comes at a time when many employers are seriously struggling to pay for their existing coverage."
Conway says that ABA is endorsed by the American Academy of Pediatrics, the U.S. Surgeon General, the Association for the Science of Autism Treatment and the New York State Department of Health, among other authorities, and notes that ABA therapy is covered by Blue Cross and Blue Shield of Minnesota.
"Applied behavioral analysis isn't experimental to Blue Cross and Blue Shield of Minnesota," he says. "They pay for the treatment in Minnesota, so we don't know why kids covered in Michigan don't get it, even though they're both covered by Blue Cross entities — same therapy, same medical cases."
Ginny Calega, M.D., vice president of medical management and policy at Pittsburgh-based Highmark Inc., says that the evidence on ABA is not all that clear-cut.
"When you look at the clinical literature around applied behavioral analysis, it's very difficult to compare one study to another," she tells The AIS Report. "They tend to be small populations and have highly individualized needs. When you look at effectiveness and outcomes, it's really difficult to compare study to study because the parameters are different.
+ Read more: tinyurl.com/633wek
Ellen Notbohm’s Newsletter
Newsletter for September 2008
• Children’s Voice, My Voice
• Autism Parent Survey and Study at Portland State University
• Ten Things part of Autism Speaks’ New School Community Tool Kit
• BACK on my Soapbox: Unbundle Me Some More, and On the Feedbag
• New book excerpts on the website
• This month in Autism Asperger’s Digest
• People in your neighborhood
• Quick stuff, updates, tidbits
“People are different. And it is the best way.”
– Mark Twain, Tom Sawyer
________________________________________
Children’s Voice, My Voice
It’s been my privilege these past four years to be a frequent contributor to Children’s Voice, the signature publication of the Child Welfare League of America. This excellent publication has kept me abreast of legislation, research and current best practices affecting at-risk children across many categories, and I’ve drawn from their staff, authors and clients the inspiration for many of my own essays and articles. So I was excited to be invited to become a regular; beginning with the September-October 2008 issue, my column, Exceptional Children: Navigating Special Education and Learning Differences will appear in every issue. Please let me hear from you if there are issues within this topic area that you’d like to see addressed.
Come browse a recent issue of Children’s Voice here. Articles include:
• Making the Case for Infant Mental Health: Pointing to the need for more investment in healthy infant brain development
• Extending Support for Extended Families: “Front end” subsidized guardianship programs are supporting relative caregivers
• Learning Styles versus Learning Disabilities
My September 2008 column is Ready or Not, Here I Come: Gauging your teen’s college readiness.
________________________________________
Participants wanted: Autism Parent Survey and Study at Portland State University
Parents and guardians of children with autism are invited to participate in a research study conducted by Dr. Helen Young in the Special Education Department of the Graduate School of Education, at Portland State University (PSU). This study will examine the perceptions of parents of children with autism regarding the experiences of their children in general education classrooms.
Learn more about the survey here.
To participate in the survey, click here.
________________________________________
Ten Things part of Autism Speaks’ New School Community Tool Kit
Autism Speaks has launched an online School Community Tool Kit designed to help school administrators talk with staff about how students with autism can best be supported and included in the school community. The 203-page kit is available for free download at http://www.autismspeaks.org/school and includes the following features:
What is autism? - An explanation of the symptoms of autism, the unique abilities that often accompany autism, features of Asperger’s Syndrome, and challenges that may be associated with an individual's autism.
How might a child with special needs be a part of our school?– Information about a child's right to public education, a definition of special education services and a description of instructional methods used in teaching students with autism.
General strategies for intervention– An exploration of the benefits of a team approach, supporting communication, means of improving social interaction and development, and strategies for promoting socially-appropriate behavior.
For specific members of the school community– A guide tailored to various school administrators and staff – from bus drivers and lunch aides to teachers, security staff and school nurses – based on the likely nature of their interaction with students who have autism.
Resources– A guide to recommended books, web sites and videos that can be consulted for more in-depth information.
Appendix– A compilation of articles, peer support information, teaching tools and assessment information, including Ten Things Every Child with Autism Wishes You Knew, Ten Things Your Student with Autism Wishes You Knew, articles about inclusion and visual strategies by Paula Kluth and Linda Hodgdon, and more.
________________________________________
Back on my Soapbox: Unbundle Me Some More, and, On the Feedbag
Two of my recent Soapbox subjects have called me back. I’d love to get the last word on both of these subjects, but I think it’s more likely we are in for a long discussion on both.
Didn’t we have fun a couple of months back with my op-ed Unbundle Me, lampooning the airline industry for their ever-escalating attempts to charge extra for what used to be standard? Things have gotten, as Mark Twain might say, ridiculous-er with one airline’s announcement that they will charge $7 for a “comfort kit” consisting of pillow and blanket, but to soften the blow, they will give a coupon to a home furnishings store with the “kit.” (Will the weight of the coupon be included in your 50-lb baggage limit?) Well, it looks like it’s the wadded-up sweatshirt for me for that nap at 35,000 feet; how about you?
Yeah, charging for a pillow is downright comical, but I stopped smiling when I read that another carrier planned to stop serving “free” water and offer only $2.00 bottled water. That’s right, they won’t even give you a drink of water unless it’s a “medical emergency.” That crosses the line from annoying into disturbing. Withholding life essentials is a slippery slope that simply should not be allowed. Do you even need to wonder what’s coming next? Coin slots on the lavs, my friends. Pay-per-pee. ’Course, if they make more money on the toilets than the bottled water, they will return to giving out free water, right?
All kidding aside, in the face of little to no pushback from consumers, the airlines are taking the concept of unbundling to extremes. I’m getting very uncomfortable thinking what might happen if this concept were to somehow creep into the arena of public education. If your tax dollar bought you a “base” education for your child, enough to meet narrowly prescribed benchmarks in “core” subjects, and everything else became a fee-based add-on. Don’t think it’s possible? Are you sure?
I will address these thoughts in my November Autism Asperger’s Digest column, “Don’t Unbundle Me.”
*
Because I am a rabid believer in the garbage-in, garbage-out theory of nutrition, especially as it pertains to special needs children, I last month recommended Michael Pollan’s book In Defense of Food. “Most of what we're consuming today is not food, and how we’re consuming it -- in the car...is not really eating...” says Pollan, who goes on to distinguish between what people do, “eating” or “dining,” and what animals do, which is “feed.”
The July-August issue of Via, AAA’s magazine, published a statistic that caught my eye: the average American eats 34 restaurant-purchased meals per year in his or her car. I admit to being outside the mainstream on this; our family doesn’t eat fast food and the last drive-through I went through was US-Canadian Customs at Neche, North Dakota. (No waiting!) But that’s the reason I find these kind of averages scary. It means that for every person like me who eats zero meals per year in the car, there is someone who eats 68! That’s over two months of drive-through chow-downs. If we are very, very honest with ourselves, we will admit that Pollan is right; this is feeding, not eating. Food traditions are passed from generation to generation, an important part of any culture. Is this one we want to perpetuate? Rockin’ on the porch, telling the great-grandkids about the good old days at the BK drive-through? (Assuming we survive to tell the tale...)
Interesting twist: while staying in Edmonton earlier this summer, I read discussions in several Canadian cities regarding the possibility of banning drive throughs. Was it an attempt to limit access to junky food? Nope. It was an anti-idling discussion, prompted by pollution concerns and escalating fuel costs.
I’ll be watching to see how this food-for-thought develops.
________________________________________
New book excerpts on website
Book excerpts on the website are all new as of September, a great opportunity to take a test drive:
Ten Things Every Child with Autism Wishes You Knew
http://www.ellennotbohm.com/ten_things_excerpt.html
from Chapter 8: Please Help Me with Social Interactions
Ten Things Your Student with Autism Wishes You Knew
http://www.ellennotbohm.com/ten_things_student_excerpt.html
In its entirety, Chapter 3: I Think Differently
1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders
http://www.ellennotbohm.com/1001_book_excerpt.html
from Chapter 2: The Limits of My World – Visual Strategies
The Autism Trail Guide: Postcards from the Road Less Traveled
http://www.ellennotbohm.com/trail_book_excerpt.html
from Postcards from the Homefront: I Sound Like My Mother – I Hope!
________________________________________
This month in Autism Asperger’s Digest
Storm Troopers: A Team Approach to Handling Meltdowns
Postcards from the Road Less Traveled, Autism Asperger’s Digest
September-October 2008
Excerpt:
Meltdowns are frequently part of the landscape when you have a child with autism in your classroom or home. Understanding that this behavior is almost certainly a result of a sensory or emotional overload, not deliberate or malicious sabotage, is the first step toward constructive handling of a meltdown. Having a plan in place when one hits is essential to minimizing the impact of these events to both child and environment, whether classroom or home.
Father Robert Tywoniak was no stranger to dealing with crisis when Hurricane Andrew hit his Florida community in 1992. As CEO of Catholic Charities Child Welfare Division, his agency was a frontline responder. They were able to save hundred of lives per day, track all children in the devastated area, rebuild and come back as a stronger agency that before the storm hit. The key to his success? “Good leadership, strategic planning, rehearsal and doing it all together.”
A child with autism in the midst of a meltdown is a little hurricane unto himself...
Autism Asperger’s Digest
Two-time MarCom Gold Award winner
Two-time NAPPA Parenting Resources Gold Award winner
________________________________________
People in your neighborhood
Following are some groups and organizations who have contacted me recently. These groups are all actively involved in supporting families living with autism.
PLEASANTON, CALIFORNIA
Child Care Links is a non-profit organization dedicated to providing resources that strengthen and support children and their families. We have a contract with First 5 of Alameda County, California to provide Inclusion Services to our community. Our Inclusion webpage is:
http://www.childcarelinks.org/Inclusion/inclusionpage.html
For more information contact:
Andrea M. Finley
Director of Program Development
www.childcarelinks.org
925-417-8733
Oakland 510/268-0106
DANVILLE, PENNSYLVANIA
Autism Parent Support Group meets the 4th Monday of each month.
Time- 6:30pm to 8:30pm.
Location: Danville Child Development Center, Danville, PA
Child care available.
Contact: Kathy Baas & Jerry Stropnicky (570)-275-8904
Bill Jones (570)-784-7876
Our first meeting after our summer hiatus will be September 22.
BASTROP, TEXAS
Bastrop, TX Area Yahoo and Support Group: contact Debbie at debsnest6@yahoo.com for more information on the online group and in person meetings.
VALDESE, NORTH CAROLINA
SOS-FAST: Surviving On the Spectrum - a Family Autism Support Team
SOS-FAST meets weekly at 6:30 PM on Fridays at the Valdese First United Methodist Church, 217 Saint Germain Avenue SE, Valdese, NC 28690
Visit www.sosfast.org for more information about our group and our monthly schedule
________________________________________
Quick stuff, updates, tidbits:
DS-ASD information sought. I’ve recently heard from several families who are seeking information and resources for their children with Down Syndrome-Autism. I have no experience in this area. If you know of any resources in this area that you feel confident recommending, please drop me a line at emailme@ellennotbohm.com and I will include the information in a future newsletter. Thank you to reader Melissa Bancuk, who tells me that DS-ASD is becoming much more recognized and offers: “Disability Solutions (www.disabilitysolutions.org) and Autism Research Institute (www.autism.com) are good (resources).”
*****
American presidential candidates’ positions on autism and health care: Barack Obama and John McCain have responded to ASA’s request for statements on autism and health care. Read their statements at www.autism-society.org
*****
Article Anthology updated. The Article Anthology on my website has been updated to include a number of new pieces now available. Also, a collection of my Ancestry articles is now available on one page: Every life matters.
******
I always answer my email. But we live in a world of imperfect servers, aggressive spam filters and power outages. If you’ve written to me and I haven’t answered, please try resending your message with a different subject heading.
******
Newsletter archive on my website: if you are new to our newsletter community, please visit the newsletter archive on my website and browse some popular past features.
August 2008: Please read Michael Pollan’s In Defense of Food / New autism journal seeking submissions / At the Movies
July 2008: Unbundle Me / The I-can’t time capsule
May-June 2008: Play time: Ten Things to do with a Big Box / Teacher of the Year
April 2008: Rx for Battle Fatigue / Should you “let” your child win?
March 2008: Parent Eye Contact: How It Builds Children's Self-Esteem
February 2008: Thinking About Your Family Health History /
Goodbye to a Bad Law
________________________________________
If you’ve read my books and feel inclined to share your thoughts with others, please consider posting a review on my book pages at www.amazon.com. It’s easy to do and you don’t have to post your real name.
________________________________________
Please forward this newsletter to anyone you feel might share an interest in our kids with autism. New subscribers can sign up at my website.
________________________________________
If your spam-blocking software is particularly aggressive , you may want to add our email address
From a listmate
------------------------------------------------------------
New York Times
nytimes.com
September 9, 2008
Editorial
Debunking an Autism Theory
Ten years ago, a clinical research paper triggered widespread and
persistent fears that a combined vaccine that prevents measles, mumps
and rubella — the so-called MMR vaccine — causes autism in young
children. That theory has been soundly refuted by a variety of other
research over the years, and now a new study that tried to replicate
the original study has provided further evidence that it was a false
alarm.
The initial paper, published in The Lancet, the prestigious British
medical journal, drew an inferential link between the vaccine, the
gastrointestinal problems found in many autistic children and autism.
In later papers, researchers theorized that the measles part of the
vaccine caused inflammation in the gastrointestinal tract that allowed
toxins to enter the body and damage the central nervous system,
causing autism.
Now, a team of researchers from Columbia University, Massachusetts
General Hospital and the Centers for Disease Control and Prevention
has tried and failed to replicate the earlier findings.
These researchers studied a group of 38 children with gastrointestinal
problems, of whom 25 were autistic and 13 were not. All had received
the vaccine for measles, mumps and rubella. The scientists found no
evidence that it had caused harm. Only 5 of the 25 autistic children
had been vaccinated before they developed gastrointestinal problems —
and subsequently autism. Genetic tests found remnants of the measles
virus in only two children, one of whom was autistic, the other not.
The new study adds weight to a growing body of epidemiological studies
and reviews that have debunked the notion that childhood vaccines
cause autism. The Institute of Medicine of the National Academy of
Sciences, the C.D.C. and the World Health Organization have found no
evidence of a causal link between vaccines and autism.
Meanwhile, the original paper’s publisher — The Lancet — complained in
2004 that the lead author had concealed a conflict of interest. Ten of
his co-authors retracted the paper’s implication that the vaccine
might be linked to autism.
Three of the authors are now defending themselves before a
fitness-to-practice panel in London on charges related to their autism
research.
Sadly, even after all of this, many parents of autistic children still
blame the vaccine. The big losers in this debate are the children who
are not being vaccinated because of parental fears and are at risk of
contracting serious — sometimes fatal — diseases.
___________________________________
Tuesday, September 09, 2008
Business Wire
Celebrity ‘Warrior Mom’ Jenny McCarthy Aligns with Brand Sense Partners to Create a Lifestyle Brand ; McCarthy and BSP develop the new TOO GOOD™ lifestyle brand to bring affordable, non-toxic and healthy products for children to market
LOS ANGELES - (BUSINESS WIRE) - Celebrated actress, comedian, author and activist, Jenny McCarthy has entered into an exclusive agreement with new business development consultancy Brand Sense Partners (BSP) to create a lifestyle brand and consumer product line for children. Using their proven expertise in strategic brand creation, extension and celebrity licensing, BSP will identify and develop partnership opportunities that correspond with McCarthy’s mission to build a better environment for children everywhere.
As a leading advocate for adopting a holistic approach to child development, specifically for children with autism, McCarthy is looking to extend her TOO GOOD™ brand into children’s bedding, apparel, food and beverage, feeding products, toy and activity sets, cleaning products and bathroom textiles. From gluten-free to chemically-safe, the product line will reflect McCarthy’s unyielding passion for creating safe, non-toxic surroundings for children of all ages.
“Everywhere I go I meet parents who are looking for products that are safe for their children,†said McCarthy. “Unfortunately, they want what only a handful of specialty boutiques carry at a hefty price. BSP and I are working together to fill the market void in safe, non-toxic products for children. With the TOO GOODâ„¢ brand, I intend to make the building blocks for a healthy environment universally accessible for all families. â€
McCarthy’s son, Evan was diagnosed with autism in 2005. After doctors informed her that there was no cure, McCarthy began to treat her son holistically through diet, nutrition and other interventions in his environment. Changes included using products with lead-free paints, providing gluten-free foods and participating in incremental vaccinations. Shortly after McCarthy began treating her son with these holistic solutions, Evan’s signs of autism subsided.
“McCarthy is considered a one-of-a-kind modern champion for mothers. She has become a trusted resource to help parents navigate the sometimes confusing choices set before them during their children’s development,†said Ramez Toubassy, president of Brand Sense Partners. “The TOO GOODâ„¢ brand is an extension of her efforts to advocate for reducing children’s exposure to unsafe and unhealthy products. With McCarthy’s passion and vision as the driving force and our expertise in launching celebrity brands, the line is poised to reach insurmountable success. Parents everywhere will have access to a name they can trust at a price they can afford.â€
McCarthy is a New York Times best-selling author of a series of books about motherhood and her battle with autism entitled, Belly Laughs, Baby Laughs, Life Laughs and Louder than Words: A Mother's Journey in Healing Autism. Her new book, Mother Warriors, will hit stores in September 2008, and her sixth book, Healing and Preventing Autism with Dr. Kartzinel, is scheduled for release in the spring of 2009.
Companies interested in Jenny McCarthy’s brand extension program should contact Theresa Brown, Director of Business Development at 310-867-7222.
About Brand Sense Partners, LLC
Established in 2001, Brand Sense Partners, LLC (BSP) is a strategic new business development consultancy with an integrated turnkey infrastructure designed to execute the firm’s recommendations. BSP fosters growth in new categories of business for its clients by leveraging brand equity and other strategic assets. Clients focus on their core businesses while BSP's team of industry experts develops the strategy through market research and in-depth analysis, negotiates the deals and manages the new lines of business. The BSP approach reduces capital costs, risk and time to market resulting in new, profitable and accelerated growth for its clients. Headquartered in Los Angeles, BSP manages more than 200 partnerships for its Fortune 500 clients with approximately $1.5 Billion in retail sales in the consumer products, media, technology, celebrity and fashion industries. For more information, please visit www.bsp.com.
From a listmate
A Letter to my Teacher - Fifteen things about me
If you're a parent, you're anxious about the new school year and hoping the teacher will notice your child's strengths. If you're a teacher, this is a very busy time of year! And you're excited about getting to know your students.
Here is a letter to your child's teacher. It will help your child adjust to a new classroom and make the teacher's life easy too. Download and print this FREE article now
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http://www.kenoradailyminerandnews.com/ArticleDisplay.aspx?e=1190381
Disabled equestrians to saddle up for therapeutic riding program
Posted By By Reg Clayton
Posted 3 days ago
Gentle steed Misty noses in for some attention as Northwestern Independent Living Services program developer Renee Brady joins Sunnybrook Farm owners Kevin and Sue Schabler following Saturday’s announcement of the new Sunnybrook Therapeutic Equestrian Program starting up next summer.Photo by Reg Clayton
By Reg Clayton
Miner and News
Plans for a new community recreation program specifically designed to teach horseback riding to the disabled were unveiled during a presentation Saturday afternoon.
The Sunnybrook Therapeutic Equestrian Program, in partnership with Northwestern Independent Living Services, is expected to be up and running next summer.
Sunnybrook Farm owners Kevin and Sue Schabler welcome the opportunity to expand and develop their riding programs to include the disabled.
“It’s a great program. I think it’s going to be fantastic for the community,” Ann said. “It’s really nice that (Northwestern Independent Living Services) came to us, we feel really proud to be involved.”
Three years in the planning, NILS program developer Renee Brady acknowledged Ontario’s Communities in Action Fund and the Kenora and Lake of the Woods Regional Community Foundation for funding commitments of $8,800 and $2,360 respectively that will enable organizers to move forward. The local program was developed according to Canadian Therapeutic Riding Association criteria with enhancements to extend riding opportunities to a greater range of local people with disabilities.
“We’re trying to include as many people as we can so nobody’s left out,” Brady explained. “It’s more inclusive of the local demographics.”
The Sunnybrook Therapeutic Equestrian Program is open to children and adults with physical, emotional or developmental disabilities. It will be offered three times a year in 12 weekly classes of 10-15 students. At the end of each session the students will showcase their riding skills before an audience of friends and family.
In conjunction with therapeutic riding, a wrangler program is also being developed for high school students with disabilities to gain practical experience by working with and caring for horses. The third component is Equine Friends, an opportunity to involve autistic children and seniors with Alzheimer’s to spend time with their horse buddies in a supportive setting similar to other pet therapy programs.
“It will be a great opportunity for anybody with a disability,” agreed Northwestern Independent Living Services vice-president Scott McEwan, who despite being confined to a wheelchair, attended the presentation from Vermilion Bay.
Continued After Advertisement Below
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“Maybe down the road they might talk me into going for a ride,” he said.
Communities in Action Fund representative Jamie Bolton credited Brady for her efforts in pursuing the initiative over the years.
“She won me over to the idea of the therapeutic riding program for people with disabilities or physical limitations that prevent them from participating in mainstream recreational activities,” Bolton said.
Visually impaired since childhood, Brady is an experienced rider who competes in equestrian events on Jenna, her specially trained mount. She offend competes with able bodied riders and related how many perceived limitations of disability are replaced by self confidence through participation in sport.
“Without riding my life would be a lot different, it’s a big part of who I am,” Brady said. “By competing with riders who aren’t disabled I consider myself to be equal to any able-bodied rider.”
Over the coming months, organizers will be recruiting program volunteers and pursuing fundraising activities to purchase equipment for disabled riders. The equipment includes a therapeutic ‘surcingle’ harness with handgrips for riders to hold on to for increased confidence and stability. A specially designed ramp and platform will enable wheel chair bound riders to mount a horse, assisted by attendants.
Photo by Reg Clayton
Gentle steed Misty noses in for some attention as Northwestern Independent Living Services program developer Renee Brady joins Sunnybrook Farm owners Kevin and Sue Schabler following Saturday’s announcement of the new Sunnybrook Therapeutic Equestrian Program starting up next summer.
Article ID# 1190381
From Another List
New tool for autism education
This is Karl Smith, creator of the DT Trainer, and this is one of my few blasts per year informing the autism community on our continued progress.
Thanks for your support of the DT Trainer as we are now in over 800 school districts, 220 private schools and service providers, and thousands of homes. I will continue to expand the DT Trainer to cover more topics and a wider developmental range (currently the developmental range is 2-9 years old).
However, there is another area of learning that is critical for our kids. There is 15 to 20 years of research showing how video modeling increases acquisition rates across a wide range of topics. Video modeling materials have been available for 10 - 15 years, and yet I was amazed that this powerful teaching method is impacting few of our kids.
Looking into this disconnect, I discovered that video modeling media has been released to be played in standard media players starting with video types, and now computer based media players. The problem is that video modeling is not just about playing videos, but is about the management of the process. Regular media players lack the capabilities to organize the materials to facilitate quick access to a student's specific tasks in a teaching situation. Trying to find and use up a piece of video is clumsy, cumbersome and impractical in a fluid teaching situation. Standard media players also lack the support for task analysis (breaking down tasks), sequences, transitions from video to images, transitions from images to text, data collection, visual schedules, and many other useful features to fully exploit the power of video modeling across a wide range of students and skills.
I set out to fix this situation and created the first designed player for video modeling the Activity Trainer. There is a short 2 minute video that introduces the Activity Trainer at www.dttrainer. com/atpromovideo. This tool is feature rich being driven by both research and feedback from experts in video modeling. The Activity Trainer allows users to create their own activities, and we are developing a Skills Library that includes skills in the categories of academic, daily living, communicating non-verbal initiation, recreation, social and speech. We are reaching out to video modeling creators for third party libraries which customers could add to the Activity Trainer. We will also reach out to Universities and others for a community library.
Our goal has been to offer a robust, easy to use tool that makes video modeling practical for school and home and that is affordable for schools and parents. We had to go way out on the limb financially to create this tool, but I felt that it is important for our kids to get access to the power of video modeling. I hope the community will download our free trial and either provide feedback or purchase to benefit your child or students and to help support this work. The work has been endorsed by Dr. Peter Gerhardt of the Organization for Autism Research. (See our web site) We have thus far released about 167 activities in the developmental range of 2 to 9 years old. We are currently working on over 60 more and will continue to expand our skills library.
There is a short 2 minute video that introduces the Activity Trainer at www.dttrainer. com/atpromovideo. Visit our web site (www.dttrainer. com) for more information on the Activity Trainer and to download a free 30 day trial.
From a Listmate
Friday, September 05, 2008
PR Newswire (U.S.)
Autism Center of Pittsburgh to Present Controversial Conference on Autism and Environmental Toxins, Vaccines
PITTSBURGH, Sept. 5 /PRNewswire-USNewswire/ -- The Autism Center of Pittsburgh and AutismLink, the largest autism advocacy organization in the State of Pennsylvania will be holding the 2008 Pittsburgh Autism Expo on Friday, October 24 and Saturday, October 25, 2008 at the Crowne Plaza Hotel in Pittsburgh, PA.
Details on the conference and registration can be found at http://www.pghautismexpo.com. This two day conference is only $70 for parents and $140 for professionals. Certificates will be provided for continuing education credits. (Attendees must submit their own certificates for credit.)
The conference will focus on the relationship between vaccines, the environment and autism spectrum disorders and feature some of the country's top experts on the subjects of nutrition, environmental toxins, and the relationship between autism and vaccines.
"Recent findings in several cases at the CDC indicate that there may be a link between vaccines, autism, environmental toxins and mitochondrial disease," said Cindy Waeltermann, President of the Autism Center of Pittsburgh. "Parents are very concerned and hungry for information on these topics."
David Kirby, the New York-based investigative journalist and author of the NY Times Bestseller, "Evidence of Harm, Mercury in Vaccines and the Autism Epidemic - A Medical Controversy," the keynote speaker, will discuss recent developments in what has become perhaps the most contentious medical debate of a generation.
Presenters include Dr. Russell Blaylock, M.D., board certified neurosurgeon, author and lecturer; Dr. Philip DeMio, M.D., DAN Physician and father of a child with autism; Dr. Cheryl Leuthauser, D.O., Integrative medicine specialist; Kelly Dorfman, MS, LN, Nutritionist; Drs. Len Brancewicz and Joe DiMatteo, Board Certified Nutritionists and Homeopaths; Dr. Charles Simkovich, DC, Chiropractor & Cranio Sacral Therapy; Dr. Scott Faber, M.D., Developmental Pediatrician
For more information, call (412) 364-1886 or visit www.pghautismexpo.com.
Seating is limited.
SOURCE AutismLink
From a listmate
Sunday, September 07, 2008
New York Times
Parents of Special-Needs Children Divided Over Palin's Promise to Help
JENNIFER STEINHAUER and AMY HARMON
Amid the barbs and hockey banter Wednesday night, Gov. Sarah Palin directed an emotional appeal to the hearts of millions of parents with children who have special needs, promising they would ''have a friend and advocate in the White House'' in a McCain-Palin administration. As she spoke, the camera panned to her baby, Trig, who has Down syndrome.
Ms. Palin's offer of friendship sparked hope in many parents, advocates and lawyers as the often-marginalized subject of disabilities rights took center stage. ''We need one, that's for sure,'' wrote one blogger, Rhymerchick, a Phoenix mother with an autistic child, adding, ''I am tempted to vote for them just because of that promise.''
In animated debates in blogs, chat rooms and classrooms across America, others wondered what such advocacy would entail. But the governor offered no details, and Maria Comella, her spokeswoman, would not elaborate on what Ms. Palin would seek to accomplish for disabled children as vice president. ''She is going to be an advocate in the White House on multiple levels,'' Ms. Comella said in an e-mail message Friday, ''because she understands the issue, what's needed and what works.''
To those in Alaska who work with children with special needs, Ms. Palin's pronouncement was surprising; the disabled have not been a centerpiece of Ms. Palin's 20-months in office or any of her campaigns for office.
She signed legislation that would increase financing for children in Alaska with special needs -- though she was not involved in its development -- yet that state is the subject of two lawsuits that allege inadequate services and financing for those children, particularly those with autism.
''I never heard Governor Palin say as governor, 'You have an advocate in Juneau,' '' said Sonja Kerr, a lawyer specializing in disability law in Anchorage.
What lawyers, advocates and parents are seeking now, Ms. Kerr said, is to learn. ''What is behind the announcement?'' she said. ''An advocate is someone who pleads another's cause, so what is her plea going to be? To get rid of Medicaid wait lists so we can get kids services? To quickly pass the American with Disabilities restoration act? That is what I haven't heard.''
Alaska, both by dint of its sparse population and lack of resources, has often struggled to provide care and educational services for its roughly 18,000 children with physical and emotional disabilities.
For years the state shipped thousands of children out of state for mental health services, a problem so acute that Ms. Palin's predecessor created a program intended solely to get enough services in the state to bring the children back; from 2004 to 2007 the number of children sent out of state fell to 300 from about 600.
While the state made a decision to close down mental health institutions in the 1990s, it has been unable to provide alternative services for children with mental health issues.
The rural makeup of the state outside Anchorage (where half the population resides) makes services all the more difficult.
''The reason they have so many problems is lack of resources,'' said Gary Mayerson, a lawyer who represents children with autism in 30 states. ''We once went to Kodiak Island, where there are probably more bears than people, to see a kid with autism who needed a behavioral consultant. They literally have to fly these people in on float planes. So I can't exactly fault a school system for not having a speech therapist, but I do fault the district for not bringing them in or sending children out of the district for those resources.''
Ms. Palin recently signed legislation that rewrote the state's school financing formulas, in the process dramatically increasing the budget for school districts that serve children with extreme special needs. ''She had no role whatsoever'' in the development of the legislation, said its author, Representative Mike Hawker, a Republican. ''Her role was signing. She recognized the importance of what we did and endorsed it.''
Democrats have pointed, sometimes correctly, sometimes erroneously, to items in the state budget for the disabled that Ms. Palin cut. According to state documents, she cut the state's Special Olympics budget in half.
The central concern of many parents with children who have special needs is the financing to fulfill the decades-old federal mandate requiring public schools to offer educational services to their children -- or pay for them in nonpublic school settings.
The law, the Individuals with Disabilities Education Act, passed in 1975 with bipartisan support, called for the federal government to pick up 40 percent of the state cost of teaching children with special needs. The federal government pays less than half that, though more under the Bush administration than under President Clinton.
Mr. McCain voted to reauthorize the law, but voted against a measure, with nearly every other member of his party, to increase financing through a reduction in tax cuts for the wealthy. Mr. McCain has been a proponent of school vouchers, denounced by many advocates for children with special needs as draining public money away from special education programs; Ms. Palin is a school-choice advocate, her spokeswoman said.
Mr. McCain also opposes proposed federal legislation that would help pay for states to move people with special needs from state institutions into other living arrangements, but he has said he supports updating the Americans with Disabilities Act to offer more protections.
Ms. Comella, Ms. Palin's spokeswoman, would not elaborate on Ms. Palin's decision to make special needs children a centerpiece of her acceptance speech. But Ms. Palin's personal appeal held enormous emotional pull for parents who rarely see a public official who can personally identify with the same parental challenges as they do.
Ms. Palin's effort to rally parents of children with disabilities has also prompted reaction among those who fear that her idea of advocacy might really mean preventing abortions of fetuses with Down syndrome, rather than lobbying for the early medical and developmental assistance that is so crucial to their children's well-being.
New technology is enabling more women to learn in earlier stages of pregnancy whether their fetus is affected by Down syndrome. About 90 percent choose to terminate pregnancies. Parents of children with disabilities have sought to educate prospective parents on the emotional rewards of having children like their own. But many say they know better than anyone else how crucial it is that they be given a choice.
''Surely she understands that it can be dark and difficult sometimes,'' Sarahlynn Lester, whose daughter has Down syndrome, wrote on her blog this week about Ms. Palin. ''Having been in the same position, I simply do not understand the desire to legislate (rather than educate) women into making better choices.''
Nancy Iannone, a Democrat and mother of Gabrielle, 3, who has Down syndrome, said that she was so thrilled to see Trig on stage that she had to remind herself: ''I am a liberal. I am a liberal. I am a liberal.'' Ms. Palin, she said, ''has a child with a disability, but that doesn't mean her party is disability friendly.''
The last time a candidate explicitly appealed to families of the disabled at a national convention, advocates said, was 20 years ago, when the presidential nominee, George H. W. Bush, endorsed the Americans with Disabilities Act -- and got a 10 percentage point bump among voters who identified themselves as having disabilities, according to Andrew Imparato, president of the American Association of People with Disabilities, a lobbying group.
On Thursday, Mr. Imparato said he and other advocates received an e-mail message from Senator Barack Obama's campaign outlining the disabilities issues that the Democrats had addressed at their convention.
''They certainly must be aware of the effect Palin is having on this community,'' Mr. Imparato said.
PHOTO: Nancy Iannone of Turnersville, N.J., watched TV with her daughter Gabriella, 3, who has Down syndrome. Parents like her were affected by another broadcast, Sarah Palin's convention speech. (PHOTOGRAPH BY RYAN COLLERD FOR THE NEW YORK TIMES)
_______________________________
Saturday, September 06, 2008
NATIONAL POST
Argos' Durie earns spot against Als
Overcomes Injury
Mark Masters, National Post
MISSISSAUGA - For five years, Toronto Argonauts running back Andre Durie has been looking for a clear path. For five years, he has instead faced the kind of obstacles most never know.
The year 2003 was the season Durie started playing football at York University after dominating the junior Ontario Varsity Football League with a record 22 touchdowns.
He was already a father and 2003 was also the year his son Malcolm, then two, was diagnosed with autism .
"It was difficult because that was my first year of university and as a family we were already taking on so much with work and football and school and we got hit with this huge news about our son."
Durie's escape was football and by 2005 he had emerged as the star on the Lions.
But that season, the 5-foot-9, 192-pound Mississauga native faced another obstacle in the second game of the season.
"It was a third and short and we just needed a couple inches to get a first down. Queen's [University] had brought the house and they really wanted to stop us.
"We hutted the ball, and I saw a seam right where my fullback was leading me and I went to take it to the house and made a juke that I had made 150 times. And I guess the 151st time it blew my knee out."
In an instant Durie went from a can't-miss prospect to someone who could not walk.
"Right away I knew something was going on. The leg went numb and paralysis kicked in and I couldn't move my lower limbs."
Durie suffered nerve damage and the diagnosis was not optimistic.
"When they did the MRI they saw it was three ligaments and four muscles affected. And then when they found out there was nerve damage, they said I was pretty much done football and would be lucky to walk properly again."
It was a dark time for Durie.
"There was a lot of self pity. You go through a whole bunch of different emotions you never felt before. Just from an ability standpoint, you were able to do so much beforehand and pretty much your whole life has changed in one play."
The doctors told him if he didn't regain any movement in his feet within a year of the injury he was likely never going to walk properly again.
"I had two or three nerve conduction tests and there was nothing," he said. "When I first got that twitch of a toe, I knew that was a sign I could get everything to come back. From that little twitch we made it into an actual movement, and from a toe to the other functions of the foot we slowly progressed."
Durie worked himself back into shape, but before he could return to the field he needed to have another surgery to repair his ACL, which cost him the 2006 season.
Doctors told Durie to remain off the field for seven months following that surgery, but that timeline didn't work for him. The 2007 Canadian Football League evaluation camp was looming, and if he wanted a shot at making a team he needed to make an appearance.
The gamble paid off, and Durie ended up making the Toronto roster and dressed in five games that season.
This year was supposed to provide Durie an opportunity to seize a greater role with the Argos, but once again he was felled by an injury. He broke his thumb during a pre-season game in Montreal and was placed on the team's nine-game injured list.
This week, Toronto activated Durie from the injured list and tomorrow the 27-year-old is expected to make his 2008 debut playing mostly on special teams against the Montreal Alouettes.
While Durie said he is happy to be healthy again, he's more excited about the improvement in his son's condition.
"He's just magnificent now, he's communicating and speaking. He's still not the most social, but it's a huge difference from when we first realized he had that disability."
Durie-- who will often leave practice and head to his other job on the night shift with Community Living Mississauga, a non-profit organization that helps people with intellectual disabilities -- said he has been inspired by his son during his recovery and hopes one day his struggle will help his sons beat their own challenges.
"Being able to come back from these injuries while dealing with a lot of responsibility is hopefully a good teaching tool for them, and I hope one day they will see it as a source of inspiration."
From Nancy’s List
A listmate has shared the following and below I copied from the main webpage regarding this course:
I wanted to forward this document to you all. There is a government funded program that allows the instructor therapists of families who are receiving or starting DFO to receive good quality ABA training free of charge. The program modules are based on those that are used by the DSO providers to train their therapists. It is surprising to me how few people know about this initiative.
I have served on the committee putting this together and we are trying to push for families to be eligible to receive this training as well (not in place, but we are working on it!). In the meantime, your IT’s can receive this training. The first page provides some information, and the second page provides dates and locations for the various modules.
Feel free to let me know if you have any questions but more info is available on the bottom left hand corner of the website: http://www.collegeconnect.on.ca/pages/general_main.asp
IBI Training for Instructor Therapists
Intensive Behavioural Intervention Training for
Instructor Therapists
The Ministry of Children and Youth Services (MCYS) has provided funding to the Colleges of Ontario Network for Education and Training (CON*NECT) to coordinate an exciting new training initiative for Instructor Therapists who have been hired by families choosing the Direct Funding Option (DFO) in the Autism Intervention Program. More information on CON*NECT and the training to be offered is provided below.
Training for DFO Instructor Therapists:
This new initiative will enable Instructor Therapists (ITs) hired by families choosing the Direct Funding Option (DFO) to enhance their knowledge and skills through training provided by community colleges.
Training will be available at no cost to families or Instructor Therapists.
The only requirement to receive training is that the Instructor Therapist’s clinical supervisor agree that the training being offered is relevant to the training needs that the clinical supervisor has identified in consultation with the family.
Training Sessions:
A series of training sessions on varied topics that are relevant to the work of Instructor Therapists working with children with autism will be offered.
Topics will include:
o Autism: description, behavioural characteristics and assessment
o Intensive Behavioural Intervention
o Arranging Physical Environments
o Arranging Antecedent Conditions
o Arranging Consequent Events
o Data Collection
o Imitation Training
o Teaching Language
o Promoting Peer Interaction
o Professional Behaviour
It is expected that most training sessions will be approximately six hours in length.
Choice of training sessions can be tailored to meet the particular needs of Instructor Therapists.
Click here for full program descriptions
Date and Location of Training:
If you are interested in attending these training sessions, please use our online form for easy, one-step registration, or call Mary Smirle at (416) 351-0330 ext. 233 for more information. You will receive an e-mail to confirm your registration, which will include course location information and times."
Your Input is Important to Us:
We welcome and appreciate your input regarding the training initiative. You can provide input by contacting Mary Smirle at (416) 351-0330 ext. 233 or smirle@collegeconnect.on.ca.
----------------------
and the listmate also provided this schedule for the training:
IBI Training Schedule
September to December 2008
Date College Campus Module
6-Sept-08 Mohawk Fennell 1
10/11-Sept-08 George Brown St. James 1
13-Sept-08 Mohawk Fennell 2
17/18-Sept-08 George Brown St. James 2
18/25-Sept-08 Seneca Newmarket 1
20-Sept-08 Mohawk Fennell 3
20-Sept-08 Seneca Newnham 1
24/25-Sept-08 George Brown St. James 3
27-Sept-08 Mohawk Fennell 4
27-Sept-08 Seneca Newnham 2
1/2-Oct-08 George Brown St. James 4
2/9-Oct-08 Seneca Newmarket 2
4-Oct-08 Mohawk Fennell 5
4-Oct-08 Seneca Newnham 3
8/9-Oct-08 George Brown St. James 5
15/16-Oct-08 George Brown St. James 6
16/23-Oct-08 Seneca Newmarket 3
18-Oct-08 Mohawk Fennell 6
22/23-Oct-08 George Brown St. James 7
25-Oct-08 Mohawk Fennell 7
25-Oct-08 Seneca Newnham 4
29/30-Oct-08 George Brown St. James 8
30-Oct/6-Nov-08 Seneca Newmarket 4
1-Nov-08 Mohawk Fennell 8
1-Nov-08 Seneca Newnham 5
5/6-Nov-08 George Brown St. James 9
8-Nov-08 Mohawk Fennell 9
8-Nov-08 Seneca Newnham 6
12/13-Nov-08 George Brown St. James 10
13/20-Nov-08 Seneca Newmarket 5
15-Nov-08 Mohawk Fennell 10
15-Nov-08 Seneca Newnham 7
22-Nov-08 Mohawk Fennell 1
22-Nov-08 Seneca Newnham 8
29-Nov-08 Mohawk Fennell 2
29-Nov-08 Seneca Newnham 9
6-Dec-08 Mohawk Fennell 3
6-Dec-08 Seneca Newnham 10
13-Dec-08 Mohawk Fennell 4
---------------
And an interesting article from Lindsay Moir this weekend:
Ask Lindsay Moir:
Issues and topics that require attention from the special education community
Friday, September 05, 2008
Question:
Each year at the beginning of the school year, I try to alert the special education community to issues and topics that I believe will require our attention and input.
As school starts, what do we need to be aware of in a special education context?
Answer:
Teachers' contracts: we have enjoyed a time of "relative peace' in the education sector — the teacher strikes which plagued the system during the Harris-Eves years, have been managed well by the Liberal government — generous contracts and some incentives to settle, have given us a strike free time.
These contracts are being re-negotiated currently. The Elementary Teachers have served notice that in addition to increased pay, they want to double their preparation time to match current provisions for high school teachers. This would require two or more additional teachers to cover the increased prep time in the average elementary school — this would require significant funding from the province in a time of economic downturn —can we afford it?
Capping primary classes at 20 students has been an expensive political success — research is divided as to the actual impact of this move — but parents and educators perceive it as making a difference.
There is discussion about setting a "cap" in the Junior Division (Grades 4-6). Again any hard limit on class size, results in the need for more teachers (and more money).
Ongoing negotiations will likely peak this Fall and become very high profile. This government has prided itself on its ability to bring peace in education, so they have a lot riding on reaching a settlement.
Mid-Mandate: In my 31 years in the Ministry of Education, I have observed a rhythm to succesive governments. When they are first elected there is a flurry of new initiatives and legislation as they set their legislative agenda.
Mid-mandate there is a lot of "studies" and reports and not a lot of concrete action. As a government prepares to face the electorate at the end of their mandate, legislation is enacted and a flurry of announcements are made. This government is no different than its predecessors in this regard.
After an initial flurry of Special Education documents and programs, very little new is being announced. Studies and reports are the order of the day. Watch for the pace of change to pick up late in this school year and the Fall of 2009. I believe that maintaining peace in the education sector is the number one priority at this time.
The Minister: I believe there is almost unanimous agreement among parents, community professionals and educators that Kathleen Wynne is the "Special Education " Minister. She is more informed, more pro-active and more interested in Special Education than any previous Minister of Education. She certainly has moved the "agenda" forward!
I believe that her political future will hinge on how successful she is in managing the teacher contract situation. If we see strikes and disruptions, her political position will be weakened. She might become cautious in dealing with the powerful teachers' unions on key Special Education initiatives, if negotiations don't go well.
Declining Enrollment: 60 out of 72 Ontario school boards will have declining enrollment this year (and for the foreseeable future). Since board's primary funding grants are "enrollment-based," a decline in the number of students means less dollars for board and school operations.
While Special Education Funding is (in theory) protected from this decline, you may feel that this will not effect Special Needs children. However if boards do not adjust their spending in other areas of their budget — they need to find dollars in every area.
I am concerned that I am receiving a HUGE number of calls this Fall regarding cuts in Educational Assistant time — services that were there in June have disappeared. Situations like these mean that boards are reducing Special Education services while still receiving the same Special Education dollars!
A committee has been formed to explore the declining enrollment issue and will report to the Minister by December 2008.
Full Day/Every day JK & SK: This highly popular initiative has disappeared onto the back burner. Dr. Charles Pascal is heading this initiative for the Premier's Office, has become virtually invisible.
The Teachers' Federations see this as a job-saving device and I am sure that it will be raised in contract negotiations. It could virtually double the number of JK and SK teachers required overnight.
I have a feeling that the government would like to save this initiative till closer to the next election and hope that an economuic upturn makes it fiscally possible.
High Skills Majors: This program has taken off! Virtually every board is offering clusters of high school credits on a theme — such as Health & Wellness, Hospitality &Tourism, The Environment, Arts & Culture, Construction, Transportation, Horticulture & Landscaping ....and more.
These programs emphasize acquiring practical hands-on skills which prepare students for locally available employment through extended Work Experience , Cooperative Education and academic learning.
Although designed as an "anti-dropout" initiative, it has been very popular with special education students as well! Its widespread availability is a positive sign for exceptional children.
An announcement on the Ministry website on September 2,2008 gives details of which schools and boards offer High Skills Majors . Check to see what is available in your area.
Autism lawsuit: Ontario parents have launched a court case to require school boards to include Intensive Behaviour Intervention (IBI therapy) in school programs. This case is a class action and has been widely-reported in the newspapers.
As it works its way to the Supreme Court look for developments. Other provinces are providing this integrated service currently. Since the government funds both the education and the therapy, parents feel that they need to take the lead here.
Research supports the parents' position that an integrated approach is the most effective strategy for school-aged children with autism. I will provide regular updates in this case. Part of the issue is the role of "non-teachers" in the classroom.
In one way, 2008-09 should be a quiet year in special education — but in another it has the potential to be explosive
From Nancy’s List
This was shared by a listmate, looks like an amazing event. Admission fees are cheaper for those not supported by an organization, please check all attachments to the e-mail for a full descrption of the seminars and for a registration form for individuals:
DEFINING A RIGHTS BASED FRAMEWORK
Advancing Inclusion of Students with Disabilities
I encourage you to share this message broadly and ask your school board and community support agencies to send people - perhaps even yourself!
I distributed info several months ago about this conference, but have received further details this week, as follows:
• Please see the detailed program (Thursday September 25th to Saturday September 27th)
• Please note that there is a special registration process and rate reduction for those of us who lack expense accounts and professional development budgets. ($325 this week; $400 subsequently).
• I would encourage people to ask school boards, local groups or provincial associations - with which they are associated, for which they provide such great voluntary service - for financial support so that they might attend. Some people have already been sponsored, thanks to the Marsha Forest Centre and Community Living Ontario.
• There are opportunities to assist at the Forum - by facilitating and recording discussion groups. If you are interested, please contact me.
• Hotel rooms can be reserved on-line at a special conference rate of $129 a night (double) - not bad for a Toronto airport hotel.
I am on a panel the first morning, to represent "a parent perspective" on "Human Rights and Inclusion" - and, as usual, want to hear about issues you face with your families and in your communities, as the school year begins.
Those of us who are able to attend will do our best to represent others and to reflect how policies are actually implemented.
I think it is important that news about this event be circulated far and wide.
People who cannot - or will not - attend should know that this crucial discussion is taking place.
We need to communicate what transpires and all that we learn.
----- Original Message -----
From: Marilyn Dolmage
Sent: Tuesday, August 12, 2008 6:10 PM
Subject: CASHRA forum
I apologize for this mass mailing but wanted a quick way to get in touch with a number of people to encourage you to attend the upcoming national forum on inclusive education, led by the Canadian Association of Statutory Human Rights Agencies (CASHRA).
I have had the opportunity to work with most of you, and often wished there was a way for us all to get together... and now there is.
Because you are all in leadership positions within school boards, the Ministry or other education organizations, I would encourage you to share this information with your colleagues as well.
Please see the attached documents or go to http://www.inclusiveeducation.ca/cashraforum/cashraintro.html and http://www.cashra.ca/en_cashra.htm
for further information.
As the forum title says, surely it is time for "Defining a Rights Based Framework" as a way of "Advancing Inclusion of Students with Disabilities"
Through this organization, Human Rights Commissioners and officials from across Canada exchange information, promote collaboration, combine voices nationally and have the opportunity to take public positions that promote and protect human rights.
This gathering is being organized by Gordon Porter, Chair of the New Brunswick Human Rights Commission, who has been a long-time leader in inclusive education - in his work in New Brunswick schools, through the Canadian Association for Community Living, with Inclusion International, etc. I am copying this message to Gordon, who can answer your questions about the forum or CASHRA.
The Ontario Human Rights Commission has developed Guidelines for Accessible Education that are very much in synch with the direction of our Ministry of Education's "Student Success" initiatives - to promote differentiated instruction and universal curriculum design, and better futures for all of our young people. Successful classroom strategies have been known for 20 years, but need to be shared.
The member organizations of the Ontario Coalition for Inclusive Education work to ensure that students of all abilities are members of regular classrooms in their own neighbourhood schools.
We want all available resources to be used well, to improve supports to their teachers.
Why do so many obstacles still exist? How can struggles be avoided?
The only way to move forward is to work together.
I hope Ontario will be well-represented at this forum, so that we can learn from those in other provinces, combine our voices and encourage proactive change. People from across Canada will be here, discussing issues and asking us what we are doing.
Organizers are also looking for people to act as facilitators and recorders for the discussion groups each day during the Forum. Please let me know if you or others you know might be interested.
I hope you are enjoying the summer before getting in gear for school to return. Because of holidays - mine and others - I have just received this more detailed information. Sorry for the short notice, but the cost of registration goes up after this week.
Families and allies can access a reduced, special registration rate as well (which is also lower this week) - as these attachments and links indicate.
I would ask you to encourage Special Education Advisory Committee, advocacy association and other community representation. It may be that these partners in education can ask for support to attend through some community group.
Please come and bring others with you! I hope to see you there. Please email Gordon or me if you need more information.
Marilyn
email: inclusion@sympatico.ca
-----------------------
The Toronto Sun put out this report, from coverage on the Associated Press. American Advocacy Groups have already posted out rebuttals, claiming the study was flawed. The debate continues:
Thursday, September 04, 2008
THE TORONTO SUN
Research debunks vaccine link to autism
THE ASSOCIATED PRESS
New research further debunks any link between measles vaccine and autism, work that comes as the nation is experiencing a surge in measles cases fueled by children left unvaccinated.
Years of research with the measles, mumps and rubella vaccine, better known as MMR, have concluded that it doesn't cause autism. Still, some parents' fears persist, in part because of one 1998 British study that linked the vaccine with a subgroup of autistic children who also have serious gastrointestinal problems.
That study reported that measles virus was lingering in the children's bowels.
Only now have researchers rigorously retested that finding, taking samples of youngsters' intestines to hunt for signs of virus with the most modern genetic technology. There is no evidence that MMR plays any role, the international team -- which included researchers who first raised the issue -- reported yesterday.
"Although in fact there was evidence that this vaccine was safe in the bulk of the population, it had not been previously assessed with respect to kids with autism and GI complaints," said Dr. W. Ian Lipkin of Columbia University.
"We are confident there is no link between MMR and autism," Lipkin said.
----------------
From the Toronto Star yesterday and the same article was also in the Globe today:
No link between measles vaccine and autism, study confirms
September 04, 2008
Lauran Neergaard
THE ASSOCIATED PRESS
WASHINGTON – New research further debunks any link between measles vaccine and autism, work that comes as the United States is experiencing a surge in measles cases fuelled by children left unvaccinated.
Years of research with the measles, mumps and rubella vaccine, better known as MMR, have concluded that it doesn't cause autism. Still, some parents' fears persist, in part because of one 1998 British study that linked the vaccine with a subgroup of autistic children who also have serious gastrointestinal problems. That study reported that measles virus was lingering in the children's bowels.
Only now have researchers rigorously retested that finding, taking samples of youngsters' intestines to hunt for signs of virus with the most modern genetic technology. There is no evidence that MMR plays any role, the international team – which included researchers who first raised the issue – reported Wednesday.
"Although in fact there was evidence that this vaccine was safe in the bulk of the population, it had not been previously assessed with respect to kids with autism and GI complaints," said Dr. W. Ian Lipkin of Columbia University College of Physicians and Surgeons, who led the work published in PLoS One, the online journal of the Public Library of Science.
"We are confident there is no link between MMR and autism," Lipkin said.
Added co-author Dr. Larry Pickering of the Centers for Disease Control and Prevention: "I feel very certain that it is a safe vaccine."
Measles, a highly infectious virus best known for its red skin rash, once routinely sickened thousands of children a year and killed hundreds, until childhood vaccinations made it a rarity in this country. But so far this year, the U.S. has counted 131 measles cases, the most in a decade. Most patients were unvaccinated. Some were infants too young for their first MMR shot, but nearly half involved children whose parents rejected vaccination, the CDC reported last month.
No one knows just how many autism patients also suffer gastrointestinal disorders, pain that they may not be able to communicate. But Lipkin said that by some estimates, up to a quarter may be affected.
The MMR fear was that the vaccine's weakened measles virus somehow lodged in and inflamed intestines, allowing waste products to escape and reach the central nervous system, Lipkin said. So his team had two questions: Does measles virus really persist in children with both disorders and not other youngsters? And did vaccination precede the GI complaints which in turn preceded autism?
Researchers studied 25 children with both autism and GI disorders, and another 13 children with the same GI disorders but no neurologic problems. The youngsters – the average age was five – all were undergoing colonoscopies for their GI conditions anyway, allowing tissue samples to be tested for genetic traces of measles virus. All had been vaccinated at younger ages.
The tests uncovered traces of measles genetic material in the bowels of one boy with autism – and one boy without autism. That doesn't prove the virus never temporarily lodged in more children, but it contradicts the earlier study that raised concern.
Nor was there a relationship with vaccine timing: Just five of the 25 autistic children had MMR precede GI complaints that in turn preceded autism symptoms.
Researchers consulted some prominent vaccine critics in designing the study. California advocate Rick Rollens praised the work but said it didn't eliminate other vaccine concerns that deserve similar study. Meanwhile, he said it should draw much-needed attention to the suffering of patients like his son, who has both autism and GI disorders.
"No longer can mainstream medicine ignore the parents' claims of significant GI distress," he said.
---------------
Autism Ontario put out this survey, only a few more days to have a chance to participate. My personal opinion is that we all work hard to see our situations through rose coloured glasses, but that not one of us is exempt from being in crisis when we have a family member with ASD.
One week left to make your voice heard, please take part in this important survey.
In partnership with Autism Ontario, a research team from the Centre for Addiction and Mental Health is interested in looking at the experiences of people with ASD and their families, when the family member with ASD has a crisis. A crisis can be any time when problems get very bad, or when you have to put a lot of effort into keeping things from getting out of control. Autism Ontario will share the results of the survey with the team to inform their research and to help justify the importance of funding this project. There are only 7 questions.
PLEASE NOTE: This is anonymous. There is no way that Autism Ontario can find out who is responding.
To participate, please use this link: http://www.surveymonkey.com/s.aspx?sm=p74Kk3paIi91s0lWu9s0Fg_3d_3d
En partenariat avec Autism Ontario, une équipe de recherche du Centre de toxicomanie et de Santé Mentale désire examiner les expériences de personnes souffrant de troubles autistiques et de leur famille lorsque le membre de la famille atteint est en période de crise. Est considérée comme une crise toute période durant laquelle des problèmes graves se présentent, ou quand il faut faire de gros efforts pour que la situation reste sous contrôle. Autism Ontario partagera les résultats de ce sondage avec l'équipe afin d'enrichir leur recherche et d'aider à justifier l'importance de subventionner ce projet. Il n'ya que 7 questions.
VEUILLEZ NOTER : Cette démarche respecte l'anonymat. Autism Ontario n'a aucun moyen d'identifier les répondants.
Pour participer, s'il vous plaît utilisez ce lien: http://www.surveymonkey.com/s.aspx?sm=BXnKtzC4mPktS8Ta_2fpnV4w_3d_3d
---------------------
This article shows how community support comes through:
Community searches for lost 10-year-old boy
BURK’S FALLS - A community jumped to action to find a missing 10-year-old mildly autistic boy last Monday evening. When he was found he was scared, wet, dirty, cold and had been missing for hours, but he still held on firmly to the flowers he had picked for his mother.
Raphael Wehrstein stepped out of a 108-year-old log cabin on Monday sometime between 4 p.m. and 5:45 p.m. A family friend, who was watching out for the boy and his 13-year-old brother Tristan, had nodded off to sleep when the boy wandered off.
Shirley Meier arrived home from work and was greeted by Tristan.
“The first words out of his mouth were, ‘Mutti, I don’t know where Raphi is,’” said Meier. Mutti is German for mommy, and what the boys call Meier who shares joint custody of the two boys with her former partner Karen Wehrstein. They searched around the home and couldn’t find Raphi.
“Katie and Dave (Griffiths) have a classic Studebaker, so that was the first place I looked,” said Meier.
According to Meier, by the time she returned to the house neighbours were already arrivin to search for the boy. “The Griffiths must have called to some of the other neighbours,” she said.
The call came in to police services at 6:17 p.m.
Karen Wehrstein, Raphael’s mother, received the call that her son had gone missing about 6:45 p.m.
“You imagine your child’s face in post offices across the country,” said Wehrstein. “I was imagining all of the worst-case scenarios. Then I thought, no, he’s just wandered off into the bush and has gotten lost. I was careening back and forth between worst-case and best-case.”
When Wehrstein arrived, neighbours were combing the area.
“I wanted to go and look for him myself, but the officer said she didn’t want anyone else out in the bush because it would throw off the scent for the dogs,” she explained. Police dogs were being sent up from Orillia and helicopters were being fueled.
According to Meier there had been a bear, likely a sow with cubs, in the area recently. “The police officer said, ‘ You know, you don’t really need to worry about the bear,’” she said. “Then she asked her partner, ‘Do you have your long gun, because a pistol’s not good enough.’”
By the time Larry Sollman and his 11-year-old grandson Dryden of Sundridge had returned from playing ball at around 8:15 p.m., the area was abuzz with activity. Upwards of 50 neighbours had begun the search to find the boy. Sollman approached the police officer on the scene and informed her that he had hunted in the surrounding woods for years. She instructed him not to go into the woods.
Sollman spoke to neighbours who said they thought they had seen the boy earlier between Cunningham’s pit and North Creek. Sollman drove his truck across the farmer’s field that runs adjacent to Meier’s property. He knew Raphael would have come along the back of the field through the deep swamp. His main concern was whether the boy had made it to the river. If he had, Sollman feared the story would have had a very different ending.
Sollman yelled for boy and heard nothing, but Dryden thought he did. He yelled again, and this time Dryden was certain that he heard something. They kept yelling and the boy kept answering.
“I thought I heard his voice. Then I thought it must have been one of Shirley’s cats that I heard,” said Wehrstein. “I looked across the adjoining field and I saw this guy. I heard him talking and I knew he was talking to a kid.”
The description that Sollman had been given of the boy was that he had been wearing red.
“Are you red?” shouted Sollman. There was a long pause, and finally an answer, “No, I’m green.”
“All he would say is, ‘I’m scared’, I’m scared’,” said Sollman. “Then suddenly he shouted, ‘I’m green’.”
It was hard slogging through the swamp, and the boy had become bogged down.
“It was sure thick in there,” said Sollman. “I bet we weren’t even 100 ft. from him before we could even see him.”
Dryden turned to his grandfather and said, “Let’s go, Papa. We’ve got to get him out of there.” Sollman was impressed by how well his grandson handled the situation, aiding a boy he didn’t know.
“You’re all right,” said Dryden to Raphael. “We’ll get you out of there.”
Sollman said it was Dryden who led them out of the swamp by aiming for logs and higher ground, but he lost his boots in the process.
Wehrstein wasn’t sure how Raphael would respond to strangers, so she asked the officer if she could go to him.
“I tried to run through the field, but kept getting caught up so I was walking very, very fast,” she said. “I saw that they had managed to get him out and into the truck. He was scared, worried and had scratches all over his legs, and you can imagine the hugs.”
Wehrstein was relieved by her son’s promise never to go back there again.
“I just enveloped my arms around him,” said Meier. “The first words out of his mouth were, ‘Mutti, I brought you some flowers.’”
“Kids with autism often don’t have the same sense of danger as other kids,” said Wehrstein. “Or, he could have just decided to go for a walk and went too far just like any normal 10-year-old would do. You just don’t know whether the autism had anything to do it.”
In Sollman’s eyes, he and his grandson are not heroes.
“There were so many people involved,” he said. “God willing, we were at the right place at the right time.”
Meier said how pleased she was with the immediate response to action when she checked with a neighbour to see if they had seen the Raphael.
“I am surrounded by fantastic people,” she smiled.
Wehrstein was moved by the immediate and intense reaction by the community that dedicated themselves to finding her son. “I was very moved by that,” she said. “It shows it takes a village to raise a child.”
From a Listmate—for our American Readers.
2008 Republican National Convention: Remarks as Prepared for Delivery
by John McCain
SAINT PAUL, Minn., Sept. 4 /PRNewswire-USNewswire/ --
This evening U.S. Sen. John McCain will accept the Republican Party's
nomination for President of the United States. The full text of Sen.
McCain's acceptance speech, as prepared for delivery, is below.
(Logo: http://www.newscom.com/cgi-bin/prnh/20080114/RNCLOGO ) U.S.
Sen. John McCain
Thank you all very much. Tonight, I have a privilege given few
Americans - - the privilege of accepting our party's nomination for
President of the United States. And I accept it with gratitude,
humility and confidence.
In my life, no success has come without a good fight, and this
nomination wasn't any different. That's a tribute to the candidates
who opposed me and their supporters. They're leaders of great ability,
who love our country, and wished to lead it to better days. Their
support is an honor I won't forget.
I'm grateful to the President for leading us in those dark days
following the worst attack on American soil in our history, and
keeping us safe from another attack many thought was inevitable; and
to the First Lady, Laura Bush, a model of grace and kindness in public
and in private. And I'm grateful to the 41st President and his bride
of 63 years, and for their outstanding example of honorable service to
our country.
As always, I'm indebted to my wife, Cindy, and my seven children. The
pleasures of family life can seem like a brief holiday from the
crowded calendar of our nation's business. But I have treasured them
all the more, and can't imagine a life without the happiness you give
me. Cindy said a lot of nice things about me tonight. But, in truth,
she's more my inspiration than I am hers. Her concern for those less
blessed than we are - victims of land mines, children born in poverty
and with birth defects - shows the measure of her humanity. I know she
will make a great First Lady.
When I was growing up, my father was often at sea, and the job of
raising my brother, sister and me would fall to my mother alone.
Roberta McCain gave us her love of life, her deep interest in the
world, her strength, and her belief we are all meant to use our
opportunities to make ourselves useful to our country. I wouldn't be
here tonight but for the strength of her character.
My heartfelt thanks to all of you, who helped me win this nomination,
and stood by me when the odds were long. I won't let you down. To
Americans who have yet to decide who to vote for, thank you for your
consideration and the opportunity to win your trust. I intend to earn
it.
Finally, a word to Senator Obama and his supporters. We'll go at it
over the next two months. That's the nature of these contests, and
there are big differences between us. But you have my respect and
admiration. Despite our differences, much more unites us than divides
us. We are fellow Americans, an association that means more to me than
any other. We're dedicated to the proposition that all people are
created equal and endowed by our Creator with inalienable rights. No
country ever had a greater cause than that. And I wouldn't be an
American worthy of the name if I didn't honor Senator Obama and his
supporters for their achievement.
But let there be no doubt, my friends, we're going to win this
election. And after we've won, we're going to reach out our hand to
any willing patriot, make this government start working for you again,
and get this country back on the road to prosperity and peace.
These are tough times for many of you. You're worried about keeping
your job or finding a new one, and are struggling to put food on the
table and stay in your home. All you ever asked of government is to
stand on your side, not in your way. And that's just what I intend to
do: stand on your side and fight for your future.
And I've found just the right partner to help me shake up Washington,
Governor Sarah Palin of Alaska. She has executive experience and a
real record of accomplishment. She's tackled tough problems like
energy independence and corruption. She's balanced a budget, cut
taxes, and taken on the special interests. She's reached across the
aisle and asked Republicans, Democrats and Independents to serve in
her administration. She's the mother of five children. She's helped
run a small business, worked with her hands and knows what it's like
to worry about mortgage payments and health care and the cost of
gasoline and groceries.
She knows where she comes from and she knows who she works for. She
stands up for what's right, and she doesn't let anyone tell her to sit
down. I'm very proud to have introduced our next Vice President to the
country. But I can't wait until I introduce her to Washington. And let
me offer an advance warning to the old, big spending, do nothing, me
first, country second Washington crowd: change is coming.
I'm not in the habit of breaking promises to my country and neither is
Governor Palin. And when we tell you we're going to change Washington,
and stop leaving our country's problems for some unluckier generation
to fix, you can count on it. We've got a record of doing just that,
and the strength, experience, judgment and backbone to keep our word
to you.
You know, I've been called a maverick; someone who marches to the beat
of his own drum. Sometimes it's meant as a compliment and sometimes
it's not. What it really means is I understand who I work for. I don't
work for a party. I don't work for a special interest. I don't work
for myself. I work for you.
I've fought corruption, and it didn't matter if the culprits were
Democrats or Republicans. They violated their public trust, and had to
be held accountable. I've fought big spenders in both parties, who
waste your money on things you neither need nor want, while you
struggle to buy groceries, fill your gas tank and make your mortgage
payment. I've fought to get million dollar checks out of our
elections. I've fought lobbyists who stole from Indian tribes. I
fought crooked deals in the Pentagon. I fought tobacco companies and
trial lawyers, drug companies and union bosses.
I fought for the right strategy and more troops in Iraq, when it
wasn't a popular thing to do. And when the pundits said my campaign
was finished, I said I'd rather lose an election than see my country
lose a war.
Thanks to the leadership of a brilliant general, David Petraeus, and
the brave men and women he has the honor to command, that strategy
succeeded and rescued us from a defeat that would have demoralized our
military, risked a wider war and threatened the security of all
Americans.
I don't mind a good fight. For reasons known only to God, I've had
quite a few tough ones in my life. But I learned an important lesson
along the way. In the end, it matters less that you can fight. What
you fight for is the real test.
I fight for Americans. I fight for you. I fight for Bill and Sue Nebe
from Farmington Hills, Michigan, who lost their real estate
investments in the bad housing market. Bill got a temporary job after
he was out of work for seven months. Sue works three jobs to help pay
the bills.
I fight for Jake and Toni Wimmer of Franklin County, Pennsylvania.
Jake works on a loading dock; coaches Little League, and raises money
for the mentally and physically disabled. Toni is a schoolteacher,
working toward her Master's Degree. They have two sons, the youngest,
Luke, has been diagnosed with autism. Their lives should matter to the
people they elect to office. They matter to me.
I fight for the family of Matthew Stanley of Wolfboro, New Hampshire,
who died serving our country in Iraq. I wear his bracelet and think of
him every day. I intend to honor their sacrifice by making sure the
country their son loved so well and never returned to, remains safe
from its enemies.
I fight to restore the pride and principles of our party. We were
elected to change Washington, and we let Washington change us. We lost
the trust of the American people when some Republicans gave in to the
temptations of corruption. We lost their trust when rather than reform
government, both parties made it bigger. We lost their trust when
instead of freeing ourselves from a dangerous dependence on foreign
oil, both parties and Senator Obama passed another corporate welfare
bill for oil companies. We lost their trust, when we valued our power
over our principles.
We're going to change that. We're going to recover the people's trust
by standing up again for the values Americans admire. The party of
Lincoln, Roosevelt and Reagan is going to get back to basics.
We believe everyone has something to contribute and deserves the
opportunity to reach their God-given potential from the boy whose
descendents arrived on the Mayflower to the Latina daughter of migrant
workers. We're all God's children and we're all Americans.
We believe in low taxes; spending discipline, and open markets. We
believe in rewarding hard work and risk takers and letting people keep
the fruits of their labor.
We believe in a strong defense, work, faith, service, a culture of
life, personal responsibility, the rule of law, and judges who
dispense justice impartially and don't legislate from the bench. We
believe in the values of families, neighborhoods and communities.
We believe in a government that unleashes the creativity and
initiative of Americans. Government that doesn't make your choices for
you, but works to make sure you have more choices to make for
yourself.
I will keep taxes low and cut them where I can. My opponent will raise
them. I will open new markets to our goods and services. My opponent
will close them. I will cut government spending. He will increase it.
My tax cuts will create jobs. His tax increases will eliminate them.
My health care plan will make it easier for more Americans to find and
keep good health care insurance. His plan will force small businesses
to cut jobs, reduce wages, and force families into a government run
health care system where a bureaucrat stands between you and your
doctor.
Keeping taxes low helps small businesses grow and create new jobs.
Cutting the second highest business tax rate in the world will help
American companies compete and keep jobs from moving overseas.
Doubling the child tax exemption from $3500 to $7000 will improve the
lives of millions of American families. Reducing government spending
and getting rid of failed programs will let you keep more of your own
money to save, spend and invest as you see fit. Opening new markets
and preparing workers to compete in the world economy is essential to
our future prosperity.
I know some of you have been left behind in the changing economy and
it often seems your government hasn't even noticed. Government
assistance for unemployed workers was designed for the economy of the
1950s. That's going to change on my watch. My opponent promises to
bring back old jobs by wishing away the global economy. We're going to
help workers who've lost a job that won't come back, find a new one
that won't go away.
We will prepare them for the jobs of today. We will use our community
colleges to help train people for new opportunities in their
communities. For workers in industries that have been hard hit, we'll
help make up part of the difference in wages between their old job and
a temporary, lower paid one while they receive retraining that will
help them find secure new employment at a decent wage.
Education is the civil rights issue of this century. Equal access to
public education has been gained. But what is the value of access to a
failing school? We need to shake up failed school bureaucracies with
competition, empower parents with choice, remove barriers to qualified
instructors, attract and reward good teachers, and help bad teachers
find another line of work.
When a public school fails to meet its obligations to students,
parents deserve a choice in the education of their children. And I
intend to give it to them. Some may choose a better public school.
Some may choose a private one. Many will choose a charter school. But
they will have that choice and their children will have that
opportunity.
Senator Obama wants our schools to answer to unions and entrenched
bureaucracies. I want schools to answer to parents and students. And
when I'm President, they will.
My fellow Americans, when I'm President, we're going to embark on the
most ambitious national project in decades. We are going to stop
sending $700 billion a year to countries that don't like us very much.
We will attack the problem on every front. We will produce more energy
at home. We will drill new wells offshore, and we'll drill them now.
We will build more nuclear power plants. We will develop clean coal
technology. We will increase the use of wind, tide, solar and natural
gas. We will encourage the development and use of flex fuel, hybrid
and electric automobiles.
Senator Obama thinks we can achieve energy independence without more
drilling and without more nuclear power. But Americans know better
than that. We must use all resources and develop all technologies
necessary to rescue our economy from the damage caused by rising oil
prices and to restore the health of our planet. It's an ambitious
plan, but Americans are ambitious by nature, and we have faced greater
challenges. It's time for us to show the world again how Americans
lead.
This great national cause will create millions of new jobs, many in
industries that will be the engine of our future prosperity; jobs that
will be there when your children enter the workforce.
Today, the prospect of a better world remains within our reach. But we
must see the threats to peace and liberty in our time clearly and face
them, as Americans before us did, with confidence, wisdom and resolve.
We have dealt a serious blow to al Qaeda in recent years. But they are
not defeated, and they'll strike us again if they can. Iran remains
the chief state sponsor of terrorism and on the path to acquiring
nuclear weapons. Russia's leaders, rich with oil wealth and corrupt
with power, have rejected democratic ideals and the obligations of a
responsible power. They invaded a small, democratic neighbor to gain
more control over the world's oil supply, intimidate other neighbors,
and further their ambitions of reassembling the Russian empire. And
the brave people of Georgia need our solidarity and prayers. As
President, I will work to establish good relations with Russia so we
need not fear a return of the Cold War. But we can't turn a blind eye
to aggression and international lawlessness that threatens the peace
and stability of the world and the security of the American people.
We face many threats in this dangerous world, but I'm not afraid of
them. I'm prepared for them. I know how the military works, what it
can do, what it can do better, and what it should not do. I know how
the world works. I know the good and the evil in it. I know how to
work with leaders who share our dreams of a freer, safer and more
prosperous world, and how to stand up to those who don't. I know how
to secure the peace.
When I was five years old, a car pulled up in front of our house. A
Navy officer rolled down the window, and shouted at my father that the
Japanese had bombed Pearl Harbor. I rarely saw my father again for
four years. My grandfather came home from that same war exhausted from
the burdens he had borne, and died the next day. In Vietnam, where I
formed the closest friendships of my life, some of those friends never
came home with me. I hate war. It is terrible beyond imagination.
I'm running for President to keep the country I love safe, and prevent
other families from risking their loved ones in war as my family has.
I will draw on all my experience with the world and its leaders, and
all the tools at our disposal - diplomatic, economic, military and the
power of our ideals - to build the foundations for a stable and
enduring peace.
In America, we change things that need to be changed. Each generation
makes its contribution to our greatness. The work that is ours to do
is plainly before us. We don't need to search for it.
We need to change the way government does almost everything: from the
way we protect our security to the way we compete in the world
economy; from the way we respond to disasters to the way we fuel our
transportation network; from the way we train our workers to the way
we educate our children. All these functions of government were
designed before the rise of the global economy, the information
technology revolution and the end of the Cold War. We have to catch up
to history, and we have to change the way we do business in
Washington.
The constant partisan rancor that stops us from solving these problems
isn't a cause, it's a symptom. It's what happens when people go to
Washington to work for themselves and not you.
Again and again, I've worked with members of both parties to fix
problems that need to be fixed. That's how I will govern as President.
I will reach out my hand to anyone to help me get this country moving
again. I have that record and the scars to prove it. Senator Obama
does not.
Instead of rejecting good ideas because we didn't think of them first,
let's use the best ideas from both sides. Instead of fighting over who
gets the credit, let's try sharing it. This amazing country can do
anything we put our minds to. I will ask Democrats and Independents to
serve with me. And my administration will set a new standard for
transparency and accountability.
We're going to finally start getting things done for the people who
are counting on us, and I won't care who gets the credit.
I've been an imperfect servant of my country for many years. But I
have been her servant first, last and always. And I've never lived a
day, in good times or bad, that I didn't thank God for the privilege.
Long ago, something unusual happened to me that taught me the most
valuable lesson of my life. I was blessed by misfortune. I mean that
sincerely. I was blessed because I served in the company of heroes,
and I witnessed a thousand acts of courage, compassion and love.
On an October morning, in the Gulf of Tonkin, I prepared for my 23rd
mission over North Vietnam. I hadn't any worry I wouldn't come back
safe and sound. I thought I was tougher than anyone. I was pretty
independent then, too. I liked to bend a few rules, and pick a few
fights for the fun of it. But I did it for my own pleasure; my own
pride. I didn't think there was a cause more important than me.
Then I found myself falling toward the middle of a small lake in the
city of Hanoi, with two broken arms, a broken leg, and an angry crowd
waiting to greet me. I was dumped in a dark cell, and left to die. I
didn't feel so tough anymore. When they discovered my father was an
admiral, they took me to a hospital. They couldn't set my bones
properly, so they just slapped a cast on me. When I didn't get better,
and was down to about a hundred pounds, they put me in a cell with two
other Americans. I couldn't do anything. I couldn't even feed myself.
They did it for me. I was beginning to learn the limits of my selfish
independence. Those men saved my life.
I was in solitary confinement when my captors offered to release me. I
knew why. If I went home, they would use it as propaganda to
demoralize my fellow prisoners. Our Code said we could only go home in
the order of our capture, and there were men who had been shot down
before me. I thought about it, though. I wasn't in great shape, and I
missed everything about America. But I turned it down.
A lot of prisoners had it worse than I did. I'd been mistreated
before, but not as badly as others. I always liked to strut a little
after I'd been roughed up to show the other guys I was tough enough to
take it. But after I turned down their offer, they worked me over
harder than they ever had before. For a long time. And they broke me.
When they brought me back to my cell, I was hurt and ashamed, and I
didn't know how I could face my fellow prisoners. The good man in the
cell next door, my friend, Bob Craner, saved me. Through taps on a
wall he told me I had fought as hard as I could. No man can always
stand alone. And then he told me to get back up and fight again for
our country and for the men I had the honor to serve with. Because
every day they fought for me.
I fell in love with my country when I was a prisoner in someone
else's. I loved it not just for the many comforts of life here. I
loved it for its decency; for its faith in the wisdom, justice and
goodness of its people. I loved it because it was not just a place,
but an idea, a cause worth fighting for. I was never the same again. I
wasn't my own man anymore. I was my country's.
I'm not running for president because I think I'm blessed with such
personal greatness that history has anointed me to save our country in
its hour of need. My country saved me. My country saved me, and I
cannot forget it. And I will fight for her for as long as I draw
breath, so help me God.
If you find faults with our country, make it a better one. If you're
disappointed with the mistakes of government, join its ranks and work
to correct them. Enlist in our Armed Forces. Become a teacher. Enter
the ministry. Run for public office. Feed a hungry child. Teach an
illiterate adult to read. Comfort the afflicted. Defend the rights of
the oppressed. Our country will be the better, and you will be the
happier. Because nothing brings greater happiness in life than to
serve a cause greater than yourself.
I'm going to fight for my cause every day as your President. I'm going
to fight to make sure every American has every reason to thank God, as
I thank Him: that I'm an American, a proud citizen of the greatest
country on earth, and with hard work, strong faith and a little
courage, great things are always within our reach. Fight with me.
Fight with me.
Fight for what's right for our country. Fight for the ideals and
character of a free people. Fight for our children's future. Fight for
justice and opportunity for all. Stand up to defend our country from
its enemies. Stand up for each other; for beautiful, blessed,
bountiful America.
Stand up, stand up, stand up and fight. Nothing is inevitable here.
We're Americans, and we never give up. We never quit. We never hide
from history. We make history.
Thank you, and God Bless you.
Please visit
www.iloveachildwithautism.com
from a listmate
Thursday, September 04, 2008
THE TORONTO SUN
Research debunks vaccine link to autism
THE ASSOCIATED PRESS
New research further debunks any link between measles vaccine and autism, work that comes as the nation is experiencing a surge in measles cases fueled by children left unvaccinated.
Years of research with the measles, mumps and rubella vaccine, better known as MMR, have concluded that it doesn't cause autism. Still, some parents' fears persist, in part because of one 1998 British study that linked the vaccine with a subgroup of autistic children who also have serious gastrointestinal problems.
That study reported that measles virus was lingering in the children's bowels.
Only now have researchers rigorously retested that finding, taking samples of youngsters' intestines to hunt for signs of virus with the most modern genetic technology. There is no evidence that MMR plays any role, the international team -- which included researchers who first raised the issue -- reported yesterday.
"Although in fact there was evidence that this vaccine was safe in the bulk of the population, it had not been previously assessed with respect to kids with autism and GI complaints," said Dr. W. Ian Lipkin of Columbia University.
"We are confident there is no link between MMR and autism," Lipkin said.
From Nancy’s List
An article from BC, as we prepare for a Federal election:
Autism Parents Seek Clout in Federal Election
Activists target ridings with thin margins.
View full article and comments here http:// /News/2008/09/01/Autism/
By Tom Sandborn
Published: September 1, 2008
TheTyee.ca
"If my grandchildren had diabetes or cancer, or a condition that put them in wheelchairs, there would be no question about Canada providing them with the treatments they needed. Because autism is less visible and less understood, the government can get away with partially funding its treatment and a shameful patchwork of different programs across the country."
-- Donna Celle, grandmother of two autistic children in Vancouver.
A long-simmering fight between parents of autistic children and Canadian governments over funding for their children's therapy may boil over into this fall's expected federal election. Medicare for Autism Now, a recently formed activist group, means to mount a campaign it calls "The Two Percent Solution" in 14 swing ridings across the country.
In the Maritimes, Ontario and five B.C. ridings, targeting federal Minister of Health Tony Clement and other incumbents who won last time by less than two per cent, the group will press candidates with demands that they support Canada Health Act coverage for autism treatment and full funding for an intensive one-to-one therapy approach.
Clement, who some wags have dubbed "Landslide" Tony, took the Parry Sound-Muskoka riding by a razor-thin .06064 per cent margin in the last election.
Meanwhile, some B.C. families with autistic children are drowning in debt as they struggle to provide their children with therapies they believe will provide important help, therapies that are only partially funded by the provincial government.
Who is Medicare for Autism Now?
Minister Clement was not available for a requested interview over several days of Tyee phone contact with his office as this story was prepared. For at least part of that time, according to press reports, Clement was in Denver attending the Democratic Party convention. However, The Tyee did receive an e-mail from a Health Canada on August 27 that read, in part:
"The responsibility for delivering health services in Canada rests with the provinces and territories and it is at that level that the issue must be addressed. The Canada Health Act (CHA) requires provinces and territories to provide coverage for medically necessary hospital and physician services. The Act does not deal with individual medical conditions. Services provided outside of hospitals, or by health professionals other than physicians, are not insured health services under the CHA. Canada's Government has already begun to address the issues that individuals with ASD and their families are facing."
Medicare for Autism Now, a group that is campaigning to change this federal position, is led by Jean Lewis, a North Shore parent and businesswoman. The group is advised pro bono by David Marley, a gregarious local political consultant. Marley is a former staff member for the federal Progressive Conservative and B.C. Social Credit parties. Lewis's son, Aaron, 14, has been diagnosed on the autism spectrum. Marley has no direct family ties to the issue, but says he first became interested in the 1970s, when a then girl friend's parents adopted an autistic son.
The two say they are determined to change the face of Canadian medicare and rescue a generation of autism-diagnosed kids.
"As a veteran American senator once observed," says Marley, "politicians see the light when they feel the heat. We launched the Two Percent Solution in five ridings in the last elections, and I believe we had some impact on the outcome in two of them. We punched above our weight the first time, and I think this time out the campaign has real potential for democratic renewal. This isn't a partisan effort. It's an attempt to reverse a stupid policy.
'Orphans of the system'
"Putting autism under medicare could be a national issue this time," Marley continued. "The current policy is just wrong. For one thing, it costs a fortune in costs when kids aren't helped and have to be warehoused later in life. The status quo is shameful, especially when Canada considers itself a compassionate country. These children are the orphans of the health care system and we want medicare coverage to cover the costs of an effective scientific cure for autism."
Marley says he predicts the next election will result in another Conservative minority government, but hopes that Medicare for Autism Now's targeted campaign will have enough impact to promote reform.
"We want to hang a few candidates in the window this time," he says.
Marley told The Tyee that most Canadians support his group's demand. He says that an Ipsos-Reid poll taken in 2004 showed that 89 per cent of Canadians support medicare coverage for autism treatment.
But this isn't just about election tactics and backroom strategies. It's also a story about the Celle brothers and their beleaguered family.
In a bright, cheerfully cluttered old house on Vancouver's east side, Dominic bounces down the stairs with a Lego airplane he's just built and engages a visiting Tyee reporter in chatter about the toy. Dominic Celle, 8, and his six-year-old brother, Gabe, have both been diagnosed with Canadian children's most common neurological disorder, autism. Both brothers make direct eye and verbal contact with a visiting stranger, unlike the deeply damaged kids The Tyee reporter remembers from work in a camp for special needs kids in the 1970s. During the afternoon, the brothers work with their therapists, chat happily with their mother and grandmother and play raucously with a gang of friends over for a play date.
The Celle family gives the credit for their boys' improved social and cognitive skills to an intensive program of one-on-one therapy administered by a team of therapists from B.C.'s Early Autism Project, a private sector firm that delivers the detailed therapeutic approach pioneered by California physician researcher Ivar Lovaas.
Deep into debt
Like many of the over 5,000 families in B.C. with children diagnosed on the autism spectrum, the Celles have had to go deeply into debt to pay most of the costs of this expensive approach. Bobbie Celle, the boys' mother, told The Tyee on a summer afternoon recently that the Lovaas-based Applied Behaviour Analysis (ABA) has made an immense difference in her children's development. She wonders why the B.C. government will only cover part of the nearly $100,000 dollars a year it costs her family to provide life-transforming therapy and day-to-day care for Dominic and Gabe.
In the wake of a series of court cases brought by parents of autistic kids since 2000, the province will provide families with funding for autism treatment of up to $20,000 a year until the child is six. After that age, the money available for private therapy falls dramatically to a maximum payment of $6,000. Autism treatment funding varies widely across Canada, with Alberta and Newfoundland paying $40,000 a year, or more, per child, Saskatchewan $25,000, Manitoba only $6,000, while New Brunswick, like B.C., pays up to $20,000 a year for treatment.
ABA therapy involves as much as 35 hours a week of intensive one-on-one therapy for each child administered by a team of five therapists. In the Celle household, much of the work goes on in a room on the living room fitted out as a purpose-built classroom full of toys, books and the massive binders full of detailed behaviour modification programs designed to isolate small elements of behaviour and positively reinforce each successful accomplishment, with meticulous records kept for each behaviour change. The therapists are typically university students, like Angie Ho, who was working with Gabe when The Tyee came to visit, led and supervised by a qualified behavioural consultant.
The process requires extensive involvement by supportive family members like Donna Celle, the boys' grandmother, and their father, Peter. At one point, the Celles calculated that 22 different people were actively involved in Gabe and Dominic's treatment and care each month.
All this work and expense has paid off, they say. For example, Gabe, diagnosed at two, had no language facility at all. After only nine and a half months of therapy, his recognition vocabulary was in the low normal range.
"This change is an indicator of the kind of progress the boys can have with help. We don't know what they'll be like as adults, but we can be sure they'll be more capable than without the program," says their grandmother.
Provincial funding to support this therapy program, partial at best even before age six, plummets to only $6,000 a year to families for each child when they are old enough for school.
Schools picking up the burden: Christensen
The rationale for the reduction in provincial support for ABA therapy when Dominic and Gabe reach school age, B.C.'s Minister of Children and Family Development Tom Christensen told The Tyee, is that the province's schools receive an extra $16,000 per year for each student diagnosed on the autism spectrum.
Christensen says that his government's investment in autism services has increased 12-fold since 2000, from $3.4 million to $43 million, even without including the increased spending in schools. He refused to comment on the question of whether he would support Canada Health Act coverage for autism therapy, and defended the decision taken by the Campbell Liberals to fight and finally defeat the demands of parents of autistic children for full treatment funding in a court battle that went to the Canadian Supreme Court in 2004.
This court battle, an appeal initiated by the previous NDP government, ensued despite Liberal expressions of support for parents while in Opposition, including this from Colin Hansen, now B.C.'s Minister of Finance:
"It is time for the government to stop hiding behind the courts. Let's get on with providing treatment to children as the courts have ordered."
Rich Coleman, now Minister of Housing and Social Development, told the Langley Advance News, "This (appeal) disgusts me completely. I'm so mad. The Government should make the decision to fund."
During this period of great expectations, Gordon Campbell told a concerned parent, according to Families for Early Autism Treatment BC: "The NDP decision to appeal the recent ruling of Madam Justice Allan reflects a government that has consistently failed to act in the best interests of children."
"The medicare question hasn't been given any substantial thought," Christensen told The Tyee. "We are working with the federal government on initiatives to help, including a new research chair at SFU. On the question of going forward with the Supreme Court case, I wasn't in Opposition when the statements you mention were made, so I can't comment. However, once you get into government you have to listen to the best legal advice and that's what we did."
Christensen did tell The Tyee, however, that B.C. government policy reflects agreement that ABA is an effective approach.
"It's the most supportable treatment now, I think," he said. However, Christensen said that he had not met recently with Families for Early Autism Treatment, the province's most vocal advocate for ABA autism treatment.
Parent group not persuaded
Christensen said his staff had told him that the $20,000 annual cap on payments to parents to fund autism treatment was often not fully expended by families qualifying for the money. He pointed out that the number of families receiving therapy support for their autistic children had gone up from less than 500 to over 5,500 since 2002.
Jean Lewis of Medicare for Autism Now is unpersuaded. She says if families are not expending the $20,000 a year, it is because they are having trouble finding qualified therapists in the province.
A note of clarification received by The Tyee from Minister Christensen's press aide seems to support Ms. Lewis's read on the question of parents under-spending the money provided by the province for autism treatment. Kelly Gleeson forwarded the following e-mail on Aug. 28:
"The ministry's program area conducted a three-month sample of autism funding (under six agreements), which ended in January, February or March of 2008: 82 of 122 families (67 per cent) utilized all of their funding.
"Program does suggest, however, that particularly in rural and remote areas, this result is impacted by challenges that families face in locating qualified service providers."
"We have an under-capacity problem at the consultant level," Lewis says. As for the proposed SFU research chair, she says it isn't what's needed most.
"The chair is political, something to put in the window as an election nears. We know the chair should be putting out qualified consultant-level professionals, not doing more research comparing therapies. The research has been done for 40 years and the best available is Applied Behaviour Analysis. Parents of newly diagnosed children often can't get a consultant or have been misdirected into speech therapy, which is not useful until ABA has helped a kid get speech."
Clair Schuman, who heads up Autism Community Training, a not-for-profit province-wide information and referral service created to support families of children with Autism Spectrum Disorders, says she would like to see government funding increased to reflect the real costs of autism treatment.
"We need a system across Canada so all children are entitled to the treatment they need." When asked about the Medicare for Autism Now demand for coverage under the Canada Health Act, Schuman told The Tyee:
"This is a necessary treatment. I don't care what body provides it. Adequate treatment is what's important."
'Nonsensical' cutoff
Schuman, a trained social worker with an autistic son of her own, is sharply critical of B.C.'s current policy of reducing available treatment funding for families when their autism spectrum children reach school age. She says that the government's rationale, that school activity can substitute for one-on-one therapy at home, "just doesn't happen. That money is necessary. The birthday cut-off is nonsensical." She said that a strong body of evidence exists that ABA treatment is the most effective for autism, and more effective when treatment starts early.
In contrast with government documents that claim there is no wait for treatment once an autistic child is diagnosed, Schuman says that there are long wait lists for therapy in the Fraser Health Region.
"This is a real stress for families, children and the whole system," she says.
Andrea Finch is a Vancouver lawyer who has a seven-year-old son who was diagnosed on the autism spectrum when he was two and a half. She says one of the worst stressors for her is uncertainty about the future of the ABA program funding her family receives to help defray treatment costs.
"What strikes fear into me is the prospect of a letter from the government announcing changes that won't respect the individualized nature of this therapy," she told The Tyee. "Of course treatment should be covered under the Canada Health Act. Society is going to pay one way or the other. If these kids aren't helped now, we'll have to deal with them when they are full grown and non-coping adults, and parents can no longer care for them."
Related Tyee stories:
• A Sun Columnist's Change of Heart
The Vancouver Sun's Don Cayo's first heart attack was treated in Florida and he trashed the care he might have received here. Now he's changed his tune.
• BC Health Pays to Restore Man's Foreskin
Landmark patient calls circumcision 'human rights abuse.'
• Canada's Health Care 'Crisis'
How valid is the alarm behind Campbell's Euro tour?
About Autism
Autism is the most common neurological disorder affecting children and one of the most common developmental disabilities affecting Canadians. With a prevalence of around one in 150, the autism spectrum disorders change the way the brain processes information and can affect all aspects of development. Classic autism usually appears during the first three years of life. Autism is four times more common in boys than girls, and it affects more Canadian children than Downs Syndrome.
The B.C. government estimates there are approximately 6,000 children with autism in the province.
According to the Autism Society of Canada, there are five Autism Spectrum Disorders described under the diagnostic category of Pervasive Developmental Disorders (PDD) that appear in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) of the American Psychiatric Association.
Three of the Pervasive Developmental Disorders are most common and are usually what is meant when people speak of autism these days. They are Autistic Disorder (also called autism, classic autism and AD), Pervasive Developmental Disorder -- Not Otherwise Specified (PDD-NOS) and Asberger Syndrome.
Individuals with ASDs have varying degrees of difficulty in social interaction and communication and may show repetitive behaviours and have unusual attachments to objects or routines. In the most extreme cases, the child seems almost inaccessible, trapped in a non-verbal world of rocking, hand flapping and other physical tics. In 2007, a national symposium on autism research was held in Canada. The presentations at the symposium are available here.
--Tom Sandborn
Tyee contributing editor Tom Sandborn can be reached with feedback or story tips here.
---------------------
From the School Boards Class Action:
We may have a decision from the Supreme Court of Canada by the end of this year.
Numerous letters were sent to the editor at the Globe, I was copied on several of them. They were all great letters and although they did not go to print, journalists usually appreciate the feedback. It is yet another way of creating ongoing attention to the autism crisis in Ontario. Thanks to all those who took the time to write.
Below is one caption of our filed factum.
Taline
-------------------------------------------------------------------------------
1. This case raises issues that have not previously been considered or determined by this Court. The last time this Court heard a case involving a claim of disability discrimination in education was more than 10 years ago and arose in the context of the identification and placement process for special education programs.
2. This case is a proposed class action and involves a claim for damages against both school boards and the Ministry of Education for breaching the equality rights of children with autism by failing to accommodate them in the public school setting.
3. This case raises issues of public and national importance. First, it raises a novel and significant question about the availability of damages as a retrospective remedy for Charter breaches. Secondly, this case seeks clarification on the comparator group analysis under section 15 of the Charter.
4. It is of national and public interest for this Court to settle the law regarding the following issues:
• When a finding of a breach of the Charter has been established, do "appropriate and just" remedies pursuant to section 24 (1) include the potential for an award of damages?
• What is the extent of the Crown's "limited immunity" from awards of damages? Does immunity extend beyond legislative action into operational conduct? How does the test for reviewing negligent breaches of the Charter differ from tort negligence?
• Is it appropriate to consider multiple comparator groups as part of the section 15 (1) equality analysis? When is the proper time, if necessary, to refine the comparator groups and to substitute other groups in place of those selected by the claimant, early in the pleadings on a preliminary basis or at trial?
-----------------------
From the Edmonton Journal:
EDMONTON JOURNAL
OPINION, Page: A14
Eager student thwarted
Deborah Barrett, The Edmonton Journal
Monday night, our son turned to us and said, "School tomorrow."
What should have been an opportunity to share in the anticipation of a new school year instead broke our hearts.
Our son is 20 and he has autism. He can no longer attend the public school program for autistic students that he loved, and he was not accepted into any of the five inclusive post-secondary positions that were available this fall to anyone in Edmonton with any kind of developmental disability. Currently, there are no post-secondary programs designed to meet the needs of autistic students. (One institution may have a small pilot program ready for September 2009.)
As parents, we are frustrated. Our son wants to learn, and we have seen his capacity for learning grow markedly during his high school years. He loves his work experience and is a conscientious and reliable worker. With the proper training and supports, he has a lot to offer. With virtually no opportunity for an appropriate post-secondary education and the vast majority of day programs full with extended waiting lists, we are faced with trying to create a meaningful life for our son out of virtually nothing.
Too often, I hear similar stories of adult children with developmental disabilities being forced to stay home due to labour and/or funding shortages that limit programs. In this tremendously rich province, have we forgotten how to care? Can we broaden our vision to develop quality post-secondary programs so our developmentally disabled young adults can become participating, contributing members of society?
Deborah Barrett, Edmonton
--------------
From the Halifax Chronicle:
THE CHRONICLE-HERALD
OPINION, Page: A9
Autism treatment still lags despite claims of progress
Jim Young
A few recent events related to lack of mental health services in Nova Scotia prompt me to comment.
Dr. Leif Sigurdson recently threw a large stone into the tiny, tranquil pond of apathy that represents the technocrats' handling of treatment for persons with autism in Nova Scotia ("Surgeon heads West with family; Doctor says 'inadequate resources' for his autistic child reason for move.")
Through the media, this much-needed surgeon explained in no uncertain terms why he was pulling up stakes and heading to a province that not only confronts the reality of science-based autism treatment, but attempts to provide same in an ethical, fair manner. The July 27 article seemed to imply that patients were being "abandoned" and that it was "sad" that this doctor was leaving Nova Scotia and that his 1,700 odd patients were being hard done by. All true.
However, in my view, what is sad is that he has to leave to ensure appropriate medical care for his child. I have a child with autism and fully appreciate the 24-hour nightmare that this family faces. I envy his ability to be in a position to move to another province.
It is "sad" that our province provides basically half of the hours of treatment universally recognized as best practice for children.
It is repugnant that children are in and out of the program in the blink of an eye, receiving a year or two of treatment in what should be a lifelong service; it is discriminatory and essentially a human rights violation to pick and choose a scant few of the thousands of persons with autism.
What about the rest who don't make the cut? Apply this logic to any other physical illness and consider your own child being shunned by the system.
In the previously mentioned article, Health Minister Chris d'Entremont states that services for autism have grown in "leaps and bounds." Who told him that? None of the parents that I know.
Everything that my daughter gets with respect to treatment, I pay for directly out of my pocket. Our family receives no financial support for treatment or respite. Never have. Evidently, we are too wealthy by the income-driven standards set by the province.
Please take the time to review the funding formula. I can tell you that it has not grown in "leaps and bounds." In fact, unless your child is fortunate enough to have been selected into the "program," there is no funding available for any treatment whatsoever.
Respite, supports? Nothing coming my child's way. So, unlike the folks who have to pay for airfare and accommodations to access out-of-province treatment, we get nothing whatsoever.
Why? Because the provincial government says we're not covered under the Canada Health Act. The federal government says it's at the discretion of the provinces because you're not covered under the CHA. OK, we get it. Now change the act. Talk it out and pick up a pen.
Something that is growing in "leaps and bounds" is the number of diagnoses of autism and related conditions.
The minister perhaps should reflect on that point, evaluate the scant funding associated with all mental health issues (is it three per cent of the total health budget?), check on the actual number of children receiving treatment, and ask about outcomes associated with children receiving a fraction of the required service for an inhumane amount of time and then comment on the status of treatment for autism in Nova Scotia.
I recently read Deputy Health Minister Cheryl Doiron's comments on the status of mental health services. Good for her. She made Minister d'Entremont squirm in his seat, I am sure. The stigma and resistance to confront non-physical illnesses are a global concern. Thanks to the deputy minister for at least confronting the issue with the right people.
While the polity continues to duck the real issue - provision of core health needs under the Canada Health Act - provincial governments continue to pay lip service to it.
As evidenced by additional recent articles concerning the state of mental health services, it appears that they will continue to do nothing more than the bare minimum because they don't have to. So why would they? At present, the provision of services for autism is solely at the discretion of cabinet.
How would you feel if your local hospital told you that your child's infection cannot be treated because, well, his or her name is put on a list and randomly selected for treatment? Sorry, you weren't selected. That is the reality for families here in Nova Scotia.
Thank you to Dr. Sigurdson for his bold statements. I can appreciate that moving under these circumstances must be stressful. However, knowing what I know about autism treatment services in Nova Scotia, I would be on his heels if circumstances would allow it. I am resigned to the fact that the day will come. We all want what is best for our children.
But wait, the long-standing call by autism advocates across the country for inclusion of science-based autism treatment under the Canada Health Act is being backed by politicians of various stripes. Here at home, NDP Leader Darrell Dexter is championing the cause. Thank you to Darrell Dexter for his efforts. They have and continue to be significant.
Federal Health Minister Tony Clement has a busy schedule. He needs to find time to consider what is morally and legally right and that funding autism treatment is fiscally the best way to actually decrease the drain on public coffers over the lifespan of an individual with autism.
Jim Young lives in Dartmouth and represents Families for Early Autism Treatment.
______________________________________
Wednesday, September 03, 2008
THE LONDON FREE PRESS
Looking to assist autistic children, local firm promises dog donations
CHARITY: Portion of sales from thewag.com will go toward developing service dogs
KATHERINA DEHAAS
An organization that trains dogs in Canada to help autistic children is about to get a boost.
The Wag Inc., a London-based Internet company that sells leather accessories for dogs, has launched a campaign to raise money for National Service Dogs, a charity based in Cambridge.
The Fidelco Guide Dog Foundation in the United States will also benefit from the year-long campaign.
For every item sold, the Wag Inc. will donate $2 to each organization, said Tibor Hattayer, its president.
His love of dogs -- he's an owner and breeder of German shepherds -- and his appreciation for people with autism led him to a similar campaign with National Service Dogs back in 2004, and now this one.
He has worked with children and adults with autism through Community Living London for 17 years and has witnessed first-hand the difference service dogs can make in the lives of autistic children.
Raising money for service-dog organizations through the sale of dog accessories was a natural fit, he said.
Hattayer said he wants to get other businesses involved.
"I can't do that all on my own," he said.
"We intend to inspire companies, especially companies that value that human-dog relationship, to come on board."
Service dogs help autistic children in areas of safety, social bonding and self-control.
To find out more about the company, go to www.thewagcanada.com.
According to its website, National Service Dogs in 1996 became the world's only known facility designed to link service dogs to autistic children as a way of keeping the kids from "bolting into unsafe environments."
The service dogs, the group says, were certified, thus allowing an autistic child to attend school or other public places with the dog. For more, go to www.nsd.on.ca
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I often share articles from Lindsay Moir as posted on the OACRS website. Here is a summary of recent articles with links from another list, hopefully the links work on this mailing. If not, you can go to the website listed and get to all the articles that way:
“Ask Lindsay Moir” articles are available online
Lindsay retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Do you have school issues?
e-mail Lindsay at ask.questions@yahoo.ca and he will answer as many questions as possible.
Recent articles:
Alternative education options
The growing role of grandparents
Different expectations for exceptional children
The guiding principles for interacting with your school
Parents who are bullied need to stand up, take action
Bullying in the education system
Movies and books of interest for parents with exceptional children
School, family and community can work together to serve exceptional kids
Parents struggle to ensure children stay integrated in the classroom
Does a parent's right to know override school policy?
Archives for the past three years may be found at http://www.oacrs.com/resource-familynet.php
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And along with school issues, I shared in a mailing last week about a great resource, a couple of books written by an Ontario mother and teacher. Another listmate sent on the following info to add to that:
http://autismaspirations.com/cms/index.php?page=shop.product_details&category_id=5&flypage=flypage.tpl&product_id=6&option=com_virtuemart&Itemid=4&vmcchk=1&Itemid=4
Hi Nancy
You might consider passing this along to other parents. You posted earlier info on this author and her books, but here is the webpage that will enable parents to learn more etc., and then be informed before purchasing. Thought it might be useful.
Cheers
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From Lindsay Moir regarding transition from school to the workplace:
Ask Lindsay Moir:
Employment options for exceptional kids
Friday, August 29, 2008
Question:
This week's question comes from four e-mails I received over the summer (two questions and two "information items")
• Our daughter, who has an intellectual disability, was turned down by her high school for a "Steps to Employment" program which has extended job placements and some Co-op Ed components, on the grounds that she is not able to "hold competitive employment."
One of her neighbourhood friends works at our local Tim Horton's and asked the manager if our daughter could "volunteer" over the summer ( no pay). She was originally scheduled to work only when her friend was working. She was so proud to put on the uniform and go to work!
Within two weeks, the manager called and said that there was no reason that she could not take on a regular shift (with PAY). Once given a chance, she proved that she had the ability to work in the service industry. She has moved from "bussing" the lobby (janitorial) to "coffee maker supreme" and refills the trays with fresh baked goods.
Sadly, when I called the teacher of the "Steps to Employment" program, her attitude was that the Tim Horton's must have done "charity," she still believes that our daughter is not capable of "real" work.
Her Tim Horton's boss has said that when she is finished school, a full-time job awaits her. She is just 18 and will return to school in a segregated DC program this fall with an after-school job of 15 hours per week.
I wish the school saw the same potential we saw this summer.
• Do you know of any major employers willing to give exceptional students after school employment?
Our son's friends all have part-time jobs, and he would love to be working too!
• Please make sure that parents of exceptional kids learn about Mindy Jacob's column in Sun Media newspapers on August 26th about the Company's Coming cookbooks and their experience in hiring a wide range of exceptional adults. This article has given me hope as my son nears the end of high school and faces the world of work.
• As the parent of two young exceptional (high functioning) students I would like to patronize businesses which go out of their way to employ exceptional adults. Do you know of any businesses like that?
Answer:
I will respond to each of the above separately, then try to draw them all together.
Sadly, I hear too many stories like this — low expectations become barriers for exceptional students. It is easier to keep them in special classes, than to support them in the community or community-based programs like "Steps to Employment."
Back in my 'younger days' I supervised a program of work experience at the Robarts School London which prepared deaf students for a wide range of employment opportunities. The program was based on teaching "generic" employment skills like punctuality, appropriate dress, initiative, pride in work and using public transit to get to the workplace.
In the end, employers can teach the specific skills for a specific workplace, but they treasure workers who show up on time every day!
In my capacity as principal, we met with placement staff each year at an Appreciation Day, and thanked them for participating in the Work Experience Program. They repeatedly told me that they would hire deaf workers now that they had seen their potential.
In London today, twenty years later, I see these same employers still hiring exceptional adults, whom they perceive as reliable and valuable employees!
In Ontario we are stressing the need to make high schools more relevant to those going directly to employment. I see many new programs with "work experience" opportunities, increasing Co-operative Education and customized Employment Preparation Programs — aimed at potential dropouts.
These programs are extremely valuable for exceptional students too! Denying your daughter access to the Steps to Employment program is just another example of discriminatory low expectations.
Many exceptional students get their "foot in the door" through family and friends. Many small independent businesses respond to this need. When we look at the larger scene, here are some major companies who in my experience corporately promote hiring exceptional students: McDonald's Harvey's, Swiss Chalet, Montana's, Tim Horton's, Home Depot, WalMart, Canadian Tire, Zellers. (Individual franchise owners may be more, or less, committed to this company "policy")
In the above story, the student volunteered so that the employer could assess her abilities. In some cases, it may be appropriate to begin with jobs that are less visible and don't require dealing with the public.
Mindy Jacob's column can be by clicking here.
Her column tells the story of the distribution centre for Company's Coming cookbooks. 20 out of 33 employees have disabilities — deafness, autism, blindness, FAS, CP and more.
Productivity is amazing. Worker retention is incredible. The booming Alberta economy has given these people a chance. This article should be compulsory reading for potential employers!
I have listed some of the major players above, but many exceptional kids get there part-time (and full-time) jobs at local small businesses. If the local Garden Centre hires exceptional students, buy your plants there. If the local grocery store employs exceptional adults, shop there.
Several Community Living Associations post list of employers who hire developmentally challenged individuals. Any parents' group or association can, and should, do this. By supporting those who give our kids a chance, we ensure these businesses will be around for the next generation.
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And a listmate shares this workshop:
INVITES YOU TO
Hiring Support Workers:
First Steps
Presented by Judith McGill
Having some form of Individualized Funding (including SSAH) can be extremely helpful in building a meaningful life for yourself or your family member. Support Workers are critical to making many of the “good things” happen in people’s lives. Before starting the interview process with potential Support Workers, it is important to consider not only what is needed in a Support Worker, but also what role he or she will play.
This one-day reflective workshop delves into what you need to do prior to interviewing. Topics covered will include:
*Laying a strong foundation before hiring
*Finding the right match
*Clarifying a Support Worker’s role
*What qualities you are looking for in a Support Worker
*Evaluating your recruitment strategies
Judith McGill is a powerful adult educator and social innovator. She has been writing and speaking about leisure identities and community building for over twenty-five years. Her provocative style and inspirational ideas have transformed the lives of many of the people that she has come into contact with. Judith is the Executive Director of Families for aSecure Future, and the author of numerous books on leisure identities,integration, and community.
When: Saturday October 18th, 2008 9:00 am – 5:30pm
Please be there by 8:30 am
Where: 25 Somerset Glen, Guelph , Ontario
Cost: $25.00 FSF members, $50.00 non-members Includes lunch
Registration: Please register by contacting Joanna Goode at:
jgoode@sympatico.ca or (519) 833-8539
NOTE THIS WORKSHOP IS ALSO OFFERED IN PICKERING ON THE 25TH OF SEPTEMBER
CONTACT US FOR INFORMATION
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A listmate has asked if anyone can help her. I recall an article from Newmarket about a year ago, where a young man with Aspergers did well in a theate group, but I don't think the group was specific for special needs. If anyone knows better on that, or has a resource, please don't be shy in sharing it:
I have a question, I don't know if this is the proper outlet for it, but I do remember seeing individual requests from parents. So, I wanted to pose the question to your mailout community, Does anyone know of a drama classes/programs for special needs children for the city of Toronto? I have been looking for high and low for such a program for Joseph my little thesbian. There are a number of classes for typically developing children of course, but none that target children with autism or any special need. Does someone in our community know of anything? Responses can come directly to: anna.francinelli@opg.com
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And as we prepare for the Federal election campaign, I thought this was a timely article to share from our cousins in the United States. Rather interesting to compare the US Presidential strategies, compared to our Canadian Federal candidates strategies:
From the Schafer Autism report:
Presidential Candidates Debate on Autism
This week the USAAA Weekly News is including a special article of the presidential candidates' stances on autism.
John McCain has worked with issues on Autism Spectrum Disorders during his time in the Senate, such as when he cosponsored the Combating Autism Act of 2006. "John McCain is very concerned about the rising incidence of autism among America's children and has continually supported research into its causes and treatment," his campaign said. "He believes that federal research efforts should support broad approaches to understanding the factors that may play a role in the incidence of autism, including factors in our environment, for both prevention and treatment purposes."
As president, McCain would work to advance federal research into autism, promote early screening, and identify better treatment options. Click here to read his plan on combating autism in America. tinyurl.com/5ux7vl Barack Obama has set forth a plan specifically on Autism Spectrum Disorders. "Some conditions like autism don't appear until age two, so infant screening is not enough," he said. "And to meet the needs of the growing numbers of Americans with autism, we need a comprehensive approach that includes not just screening, but early intervention, research, and education services."
As president, Obama would appoint a federal ASD Coordinator to oversee all federal ASD efforts, fully fund the Combating Autism Act and other federal autism research initiatives, support special needs education for children with ASD, and support universal screening. Click here to read his full plan, and click here to see his updated plan to empower Americans with disabilities tinyurl.com/5ux7vl
Wednesday, September 03, 2008
THE CHRONICLE-HERALD
OPINION, Page: A9
Autism treatment still lags despite claims of progress
Jim Young
A few recent events related to lack of mental health services in Nova Scotia prompt me to comment.
Dr. Leif Sigurdson recently threw a large stone into the tiny, tranquil pond of apathy that represents the technocrats' handling of treatment for persons with autism in Nova Scotia ("Surgeon heads West with family; Doctor says 'inadequate resources' for his autistic child reason for move.")
Through the media, this much-needed surgeon explained in no uncertain terms why he was pulling up stakes and heading to a province that not only confronts the reality of science-based autism treatment, but attempts to provide same in an ethical, fair manner. The July 27 article seemed to imply that patients were being "abandoned" and that it was "sad" that this doctor was leaving Nova Scotia and that his 1,700 odd patients were being hard done by. All true.
However, in my view, what is sad is that he has to leave to ensure appropriate medical care for his child. I have a child with autism and fully appreciate the 24-hour nightmare that this family faces. I envy his ability to be in a position to move to another province.
It is "sad" that our province provides basically half of the hours of treatment universally recognized as best practice for children.
It is repugnant that children are in and out of the program in the blink of an eye, receiving a year or two of treatment in what should be a lifelong service; it is discriminatory and essentially a human rights violation to pick and choose a scant few of the thousands of persons with autism.
What about the rest who don't make the cut? Apply this logic to any other physical illness and consider your own child being shunned by the system.
In the previously mentioned article, Health Minister Chris d'Entremont states that services for autism have grown in "leaps and bounds." Who told him that? None of the parents that I know.
Everything that my daughter gets with respect to treatment, I pay for directly out of my pocket. Our family receives no financial support for treatment or respite. Never have. Evidently, we are too wealthy by the income-driven standards set by the province.
Please take the time to review the funding formula. I can tell you that it has not grown in "leaps and bounds." In fact, unless your child is fortunate enough to have been selected into the "program," there is no funding available for any treatment whatsoever.
Respite, supports? Nothing coming my child's way. So, unlike the folks who have to pay for airfare and accommodations to access out-of-province treatment, we get nothing whatsoever.
Why? Because the provincial government says we're not covered under the Canada Health Act. The federal government says it's at the discretion of the provinces because you're not covered under the CHA. OK, we get it. Now change the act. Talk it out and pick up a pen.
Something that is growing in "leaps and bounds" is the number of diagnoses of autism and related conditions.
The minister perhaps should reflect on that point, evaluate the scant funding associated with all mental health issues (is it three per cent of the total health budget?), check on the actual number of children receiving treatment, and ask about outcomes associated with children receiving a fraction of the required service for an inhumane amount of time and then comment on the status of treatment for autism in Nova Scotia.
I recently read Deputy Health Minister Cheryl Doiron's comments on the status of mental health services. Good for her. She made Minister d'Entremont squirm in his seat, I am sure. The stigma and resistance to confront non-physical illnesses are a global concern. Thanks to the deputy minister for at least confronting the issue with the right people.
While the polity continues to duck the real issue - provision of core health needs under the Canada Health Act - provincial governments continue to pay lip service to it.
As evidenced by additional recent articles concerning the state of mental health services, it appears that they will continue to do nothing more than the bare minimum because they don't have to. So why would they? At present, the provision of services for autism is solely at the discretion of cabinet.
How would you feel if your local hospital told you that your child's infection cannot be treated because, well, his or her name is put on a list and randomly selected for treatment? Sorry, you weren't selected. That is the reality for families here in Nova Scotia.
Thank you to Dr. Sigurdson for his bold statements. I can appreciate that moving under these circumstances must be stressful. However, knowing what I know about autism treatment services in Nova Scotia, I would be on his heels if circumstances would allow it. I am resigned to the fact that the day will come. We all want what is best for our children.
But wait, the long-standing call by autism advocates across the country for inclusion of science-based autism treatment under the Canada Health Act is being backed by politicians of various stripes. Here at home, NDP Leader Darrell Dexter is championing the cause. Thank you to Darrell Dexter for his efforts. They have and continue to be significant.
Federal Health Minister Tony Clement has a busy schedule. He needs to find time to consider what is morally and legally right and that funding autism treatment is fiscally the best way to actually decrease the drain on public coffers over the lifespan of an individual with autism.
Jim Young lives in Dartmouth and represents Families for Early Autism Treatment.
______________________________________
_____________________________________
From Taline
e may have a decision from the Supreme Court of Canada by the end of this year.
Numerous letters were sent to the editor at the Globe, I was copied on several of them. They were all great letters and although they did not go to print, journalists usually appreciate the feedback. It is yet another way of creating ongoing attention to the autism crisis in Ontario. Thanks to all those who took the time to write.
Below is one caption of our filed factum.
Taline
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1. This case raises issues that have not previously been considered or determined by this Court. The last time this Court heard a case involving a claim of disability discrimination in education was more than 10 years ago and arose in the context of the identification and placement process for special education programs.
2. This case is a proposed class action and involves a claim for damages against both school boards and the Ministry of Education for breaching the equality rights of children with autism by failing to accommodate them in the public school setting.
3. This case raises issues of public and national importance. First, it raises a novel and significant question about the availability of damages as a retrospective remedy for Charter breaches. Secondly, this case seeks clarification on the comparator group analysis under section 15 of the Charter.
4. It is of national and public interest for this Court to settle the law regarding the following issues:
• When a finding of a breach of the Charter has been established, do "appropriate and just" remedies pursuant to section 24 (1) include the potential for an award of damages?
• What is the extent of the Crown's "limited immunity" from awards of damages? Does immunity extend beyond legislative action into operational conduct? How does the test for reviewing negligent breaches of the Charter differ from tort negligence?
• Is it appropriate to consider multiple comparator groups as part of the section 15 (1) equality analysis? When is the proper time, if necessary, to refine the comparator groups and to substitute other groups in place of those selected by the claimant, early in the pleadings on a preliminary basis or at trial?
From a listmate
s this book any good???
http://ajp.psychiatryonline.org/cgi/content/full/165/9/1210-a
Clinical Manual for the Treatment of Autism
edited by Eric Hollander, M.D., and Evdokia Anagnostou, M.D. Arlington, Va, American Psychiatric Publishing, 2007, 336 pp., $54.00.
RANDI HAGERMAN, M.D.
Sacramento, Calif.
Google alert
http://www.exchangemagazine.com/morningpost/2008/week36/Tuesday/090207.html
Posted September 2, 2008
____________________
WLU NEWS
SSHRC awards Laurier over $850,000 in graduate scholarships
WATERLOO – Of the 29 applications Wilfrid Laurier University submitted to the Social Sciences and Humanities Research Council of Canada (SSHRC) for graduate scholarships, all were approved, and Laurier graduate students are receiving more than $850,000 to help fund their valuable research initiatives.
Eleven Laurier students were successful in the national competition for doctoral scholarships. SSHRC funds two levels of awards: Canada Graduate Scholarships, SSHRC’s most prestigious and lucrative scholarship valued at $105,000 over three years, and doctoral fellowships, valued at $20,000 over one, two or three years. All but one of the funded students will hold their award at Laurier.
“I am delighted with our students’ success in receiving these major awards,” says Dr. Joan Norris, dean of graduate studies. “The research that they will carry out under the auspices of the Council will contribute significantly to knowledge in a wide variety of disciplines. This success affirms Laurier’s efforts to develop and expand our already strong graduate programs in the social sciences and humanities.”
Sheri Longboat, a PhD student in Laurier’s geography program, is researching solutions for water management problems that persist in Ontario’s First Nation communities. Receiving her doctoral fellowship will allow Longboat to expand her research beyond water quality problems to investigate First Nations' water security within the broader Canadian water policy context.
“I hope to contribute to the empirical understanding of the First Nations' water system and present a conceptual framework for enhanced community-level water security,” says Longboat. “This will include an articulation of the interrelationships between First Nations and scientific approaches to water resources from which new water governance and management tools will emerge.”
Eighteen other Laurier students earned SSHRC Canada Graduate Scholarships for master’s students, valued at $17,500 over one year. The students come from programs including anthropology, English and film studies, global studies, history, music, psychology, kinesiology and physical education, religion and culture, social work and sociology.
Roula Markoulakis and Hannah You are two recipients of the master’s scholarship. Markoulakis, who will be pursuing a master’s degree in kinesiology at Laurier, is conducting research with autistic children to help improve early intervention strategies with families and parents. You, currently in Laurier’s music therapy program, is working to implement a program for traumatized refugee youths.
Due to the success Laurier has had receiving graduate scholarships from SSHRC in recent years, the number of applications Laurier is permitted to submit to SSHRC continues to rise steadily. This year’s 100 percent success rate will allow even more Laurier students to continue their promising research in future years.
SSHRC is an arm’s-length federal agency that promotes and supports university-based research and training in a variety of different disciplines related to the social sciences and humanities. As a key national research-funding agency, SSHRC helps to continually build the human knowledge and skills Canada needs to improve the quality of its social, economic and cultural life.
From a listmate
www.stoneycreeknews.com/opinions/article/141177
Lack of autism funding is a shame
By ANDREA HORWATH
Columns
Aug 29, 2008
The idea of denying children the therapy that helps improve their lives and diagnosed conditions is unthinkable. But that's what is happening in Dalton McGuinty's Ontario with regards to children with autism. The lack of funding for autism services is a provincial shame.
Autism Spectrum Disorder (ASD) is one of the most common developmental disabilities, usually appearing during the first three years of life. It is a serious neurological disorder affecting children and their brain development in the areas of social interaction and communication skills, often resulting in severe and pervasive impairment. The prevalence rates in recent years have been increasing, now with 1 in every 150 children diagnosed with ASD in Ontario alone. The good news is that early diagnosis and intervention programs have dramatically insured positive outcomes for children immediately and into adulthood.
After hearing from the Liberals in the 2003 election that children with autism would receive treatment regardless of their age, families today across our province are learning the hard way that this government's talk is cheap.
Instead of putting sufficient funding behind its promise, the government created a waiting list, where children can languish for years before a coveted space opens up in a treatment program. But with the crisis in funding and the absence of a long-term strategy to deal with autism spectral disorder, families lives have been turned upside-down. Children with autism benefit markedly from one-on-one therapy called IBI/ABA (intensive behavioural intervention). Without it they suffer.
Most families can't afford the amount of treatment their children need. Some have mortgaged their homes. Others hold community fund raisers. The government's pledge to fund autism treatment was supposed to end all this.
Now here's the reality: Regional centres all over the province are in deficit and have been forced to tell waiting families they can't provide further service. When vacancies become available, regional centres don't have the financial resources to fill the empty spaces with children from the long waiting list.
Imagine a parent like Paula Barrett, who played by the government's rules, waited 25 months for her son to reach the top of the treatment list. Days before the boy was to begin publicly funded IBI treatment, the family received a letter from the regional service provider containing the bad news. The centre was out of money and the youngster was out of luck. Finally he was at the top of the list only to be let down.
Lack of funding and a deficit-ridden program deprived this youngster and hundred of others of the opportunity to come out of the shell autism puts them in.
Families dealing with autism need to be able to plan for their child's future. That's impossible with the on-again, off-again nature of the McGuinty government's approach.
The not-for-profit Child Care Resources, which serves already under-serviced Northern Ontario communities, estimates its funding shortfall would result in reduction of up to 50 per cent and a severely limited capacity in their Autism Intervention Program. Parents are being warned to expect a two-year wait to begin their child's treatment.
The Liberals have closed the door on essential supports for children with autism and their families in Northern Ontario and Southern Ontario. With much fanfare they announced a summer camp for children with autism. But when summer rolled around, they cut off families from the fund that was supposed to provide a camp inclusion worker for children with autism. Moms and dads were blindsided by a new catch - if they didn't put their child in camp in July, they lost out because there was no funding for inclusion workers for August campers.
Families have actually left Ontario altogether for Alberta where programs are fully funded. That western province and its comprehensive funding for autism attracted a world autism expert from Ontario. More could follow.
We have a choice to create the kind of Ontario we want. In my Ontario, autism treatment would be fully funded and the children's needs addressed. I believe there should be an immediate increase to the funding of autism services so that Regional Centres can respond to the needs of these children.
To hold back on funding while children and families continue to suffer and struggle is inexcusable foot-dragging.
Each day that children with autism languish on waiting lists and are denied access to services is another day that their potential for progress and success is thwarted by the McGuinty government's inaction.
Andrea Horwath is the MPP for Hamilton Centre and Ontario's NDP Autism Critic
From a listmate
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Thursday, August 28, 2008
GLOBE AND MAIL
SUPREME COURT
Ontario parents continue battle for accessible autism therapies
KATE HAMMER
It was four years in the making, a stolen glance in which, for the
very first time, Anna Martini's eyes locked with her son Joshua's.
Never in Ms. Martini's life had eye contact seemed so precious. Joshua
Martini, now 11, was diagnosed with autism shortly before his third
birthday. His mother credits therapies such as applied behaviour
analysis (ABA) and intensive behavioural intervention (IBI) with
bringing his wide brown gaze to connect with her own.
A class-action lawsuit brought by the Martinis and four other families
against seven Ontario school boards and the provincial government has
over the past three years fought and fumbled its way through levels of
court, ending up at the Supreme Court of Canada. Elements of the
lawsuit have been tossed out by judges and reborn in turn, and, in
documents submitted yesterday to the Supreme Court of Canada, lawyers
for the families hope to resurrect several more elements of the
lawsuit they argue are essential to making ABA and IBI available to
Ontario children affected by autism.
These elements relate to their rights to seek damages from the
provincial government and to the basis on which their lawyers will
argue for access to ABA and IBI therapies for their children in
public-school classrooms.
A spokesperson for the Ontario Ministry of the Attorney-General
confirmed the status of the lawsuit, but declined any further comment
while the case remained before the courts.
ABA and IBI therapies are widely regarded as the most effective -
perhaps the only effective - intervention available to children
affected by autism. According to Noor Muhammad, executive director of
the Autism Centre of Canada, a non-profit care organization, they are
"one of the most scientifically proven therapies in the field of
autism."
Ms. Martini and her husband, Umberto, spent their life savings,
re-mortgaged their Woodbridge home, cashed their registered retirement
savings plans and borrowed money from family to pay for one-on-one
behavioural therapy for Joshua and his younger brother Noah, who was
also diagnosed with autism.
Parents in Ontario are forced to make difficult decisions in order to
secure provincial dollars to pay for these treatments. In order to
receive funding, the minimum number of hours a child is required to
attend therapy prevents them from also attending public school. The
province will pay for private schooling that offers ABA and IBI
therapies, but these facilities aren't numerous enough to be readily
accessible to families throughout the province.
Many parents have to give up their jobs and drive hours every day,
just to take their children to and from school, according to David
Baker, one of the lawyers for the families.
Lynne Shane, another complainant in the lawsuit, said, "I want my son
to go to school with his sister and all of the children on my street."
When her son began Grade 1, she tried taking him to public school and
then bringing him home for 2 1/2 hours of behavioural therapy in the
evenings, but before long he began hiding under the kitchen table to
avoid his therapist.
In British Columbia and New Brunswick, funding is available for
children with autism to bring support workers specially trained in IBI
and ABA therapy into public-school classrooms. In Ontario, the
government will only pay for teacher's aides, and IBI and ABA
therapists are not allowed in the classroom.
Teaching assistants often don't know how to address these children's
special needs, and can inadvertently undermine therapy.
"Consistency is absolutely critical," said Michael Lewis, president of
the Autism Society of British Columbia and vice-president of the
Autism Society of Canada.
"Without the consistency between the intervention that's being
delivered outside the school and inside the home or elsewhere,
basically the aide becomes nothing more than a babysitter."
According to Mr. Baker, forcing parents to choose between access to
public education and ABA/IBI therapies has driven many families to
move to other provinces, or the United States, where more integrative
programs exist.
"By forcing families to choose they save money," he said, adding that
individuals trained in these therapies would not be much more
expensive to employ than teachers' aides.
From a listmate
Friday, August 29, 2008
THE EDMONTON SUN
Hospital gives boy adult meds
MICHELLE THOMPSON, SUN MEDIA
Bad luck continues to loom over the family of an Edmonton autistic
child.
This time, little Keegan Delaney's stepfather says he lost his job after
taking time off work to care for his sick boy.
Craig Winsor said the trouble began last Tuesday, after he and his wife
took Keegan to the Royal Alexandra Hospital looking for help calming
their temperamental child.
"Keegan was being Keegan," Winsor said. "We were having problems with
his behaviour."
A nurse gave the little guy meds to help his family cope - but the
trouble is, they gave him the wrong ones, Winsor said.
"They gave him the adult dosage and he's only five," he said. "The
effects could have been very catastrophic. Fortunately, Keegan just had
a very, very long sleep."
Capital Health spokesman Rob Stevenson acknowledged medical errors
sometimes happen in busy hospitals, but said staffers work to ensure
they occur as infrequently as possible.
"Patient safety is our No. 1 priority," he said. "From our perspective,
medication errors take up the largest part of adverse events in
hospitals.
"It's our goal to reduce our medication errors down to zero."
When mistakes are made, he said staffers follow a procedure to minimize
the consequences, and then take steps to ensure the same error isn't
repeated.
"The first thing that's done is examining the consequences of the
medical error," he said. "There are a lot of different policies for
ensuring medical errors do not happen.
"(But) nursing staff, medical staff are human," he said. "Mistakes are
made. We are very sorry."
After receiving the wrong medication, Keegan was transferred to the
Stollery Children's Hospital, where he remained until last Friday.
Sun Media obtained a copy of the doctor's note Winsor received, which
requests Keegan's family "be accommodated during this very difficult
time."
But Winsor said that simply didn't happen.
Equipped with the letter, he told his boss he'd be spending the week
with his hospitalized son.
"Thursday, he decides to fire me while I'm in the hospital lying with my
son," Winsor said.
"I never called in Thursday.
"(My boss) expected me to call in even though I told him I'd be away for
the entire week."
Westcom Services, which employed Winsor for about two weeks, did not
respond to an interview request by press time last night.
But Winsor has since found another job with Canadian Natural Resources,
and he expects his employers there to be more accommodating.
"They seem to be more of a family-oriented company."
Earlier in the summer, the family made headlines after it says it was
booted from a Jasper campground after having run-ins with an employee
who was less than accommodating to Keegan's behaviour.
After that story ran, though, readers responded by offering the family a
free stay at another campsite.
ILLUS: photo by Robert Taylor, Sun Media Autism sufferer Keegan Delaney,
5, seen here with his stepdad Craig Winsor and mom Kianna Delaney, was
accidentally given an adult dosage of medication at a city hospital.
_______________________________________
Friday, August 29, 2008
THE DAILY GLEANER (FREDERICTON)
OPINION, Page: B7
If you're going to reach out, make it count
Re: Conservative MPs who have mailed flyers to residents of other
ridings across Canada
This letter was sent to Brian Storseth, MP for Westlock-St. Paul in
St. Paul, Alberta.
I was surprised to hear from you, an Alberta MP, in a House of Commons
mailout.
As a resident of Fredericton, N.B., I am used to receiving such flyers
from our MP, Andy Scott.
"Andy," as he is known by Frederictonians, has been an outstanding
representative for our riding and for a cause that is close to my
heart - the cause of autistic children and adults.
Your pamphlet did not address autism or any other major health issue
confronting Canadians.
Instead, you used your parliamentary mailing privileges to reach
across Canada in an attempt to stoke fear of crime in Canada by
sending a pamphlet featuring a picture of a young man, unshaven,
wearing an sleeveless undershirt slouched on a couch with a beer. I am
not impressed.
Since you did reach across this great county to communicate with me,
Mr. Storseth, I will let you know what does concern me as the father
of a 12-year- old boy with autistic disorder.
I ask that you encourage Prime Minister Harper to stop ignoring the
plight of autistic children in need of treatment across Canada.
Stop pretending that the federal government cannot use its tremendous
financial resources to ensure that autistic children, wherever their
parents reside in Canada, receive the evidence-based treatment they
need to live as full a life as possible. The Canada Health Act exists
despite jurisdictional concerns.
Mr. Storseth, since you have adopted me as a constitutent, I ask that
you encourage your party leader, Stephen Harper, to adopt a real
national autism strategy.
Send federal dollars to the provinces to ensure that every autistic
child receives treatment, regardless of their parents' postal address.
You have reached across the country once; you can do it again - for
autistic children.
Harold L. Doherty
Fredericton
__________________________________
Ont. senator's aide charged with violent sex assault
Andrew Seymour , Canwest News Service
Published: Tuesday, August 26, 2008
OTTAWA - A senior aide to Liberal Senator Art Eggleton has been
charged in connection with what police described as a violent sexual
assault.
Robert Meinzer, 38, is facing nine criminal charges, including
forcible confinement, sexual assault, choking, sodomy and extortion.
He is also charged with break and enter with intent, sexual assault,
assault, and two counts of assault with a weapon.
Toronto police Const. Tony Vella said the charges stemmed from an
alleged incident involving an adult female that occurred at her home
in Toronto in the first week of August.
According to Vella, Meinzer was arrested at 7:15 a.m. Monday in
Toronto. He appeared Tuesday morning in a Toronto courtroom, where
lawyers successfully requested a publication ban on the proceedings.
The ban prohibits any information released during the hearing -
including the alleged victim's identity - from being reproduced.
"There are publication bans, so I can't discuss what happened in court
today," said Crown attorney John Cisorio.
Meinzer's attorney, Dennis Lenzin, was also reluctant to talk about
the charges.
"I don't have any comment," he said when contacted by phone Tuesday
evening. "It's not for me to be talking about it when it's before the
courts."
Meinzer has been released on bail and allowed to return to Ottawa; he
is scheduled to reappear in Toronto court Sept. 10.
Police descended on Meinzer's house in innercity Ottawa to execute a
search warrant on Tuesday. The search was executed by Det. Chris
Chilvers of Toronto Police's 14 Division.
Meinzer comes from a successful Toronto family with strong ties to
politics. His father, Gerry Meinzer, was chief executive for a number
of technology companies but threw his hat into Toronto's mayoral race
in 1994, finishing third behind winner Barbara Hall and incumbent June
Rowlands. Meinzer's mother was a councillor in King Township.
Meinzer has been with Eggleton since his appointment to the Senate in
2005.
In a statement Tuesday evening, Eggleton said he "was shocked to hear
about the allegations brought against Mr. Meinzer. Effective
immediately, he has been suspended without pay from my office until
such time as the matter has been dealt with by the proper authorities
in a court of law."
Before joining Eggleton's office, Meinzer worked as special assistant,
parliamentary affairs and appointments, for then-Minister of Social
Development Ken Dryden. He also served in Secretary of State for
Multiculturalism and Status of Women Jean Augustine's Hill office as
an assistant for about nine months.
------------------------------------------------------------
FeatBC Discussion Board: Room Three: Discussions about Government Topics
------------------------------------------------------------
Meanwhile, as some Canadian politicians are dealing with their human
resources and staffing problems, those in other jurisdictions are
getting on with it...
____________________
From: emaxhealth.com
Pennsylvania Gov. Ed Rendell (D) has signed legislation requiring
coverage for autism be included in all health insurance policies sold
within the state.
The new health insurance law raises to 39 the total number of
treatments and conditions required by law to be included in every
health insurance policy sold in Pennsylvania.
When the law takes effect in July 2009, insurers will be required to
cover $36,000 in diagnosis and treatment coverage for autism. Patients
requiring treatments that exceed the $36,000 limit will be eligible
for state Medicaid reimbursements to cover the extra expense.
Because the state has mandated the inclusion of autism coverage
regardless of need, consumers whose families do not face the
challenges of autism will have to pay the same higher premium as
policyholders dealing with the condition.
Health Insurance in Premiums in PA Will Rise
Currently, children with autism can enroll in the state's Medicaid
program, which is managed by the Department of Public Welfare and
spends about $185 million annually on medical assistance programs for
residents under age 21 with autism.
Under the new law, those children would be transferred from the
Medicaid program into private health plans. That could reduce state
spending by about $13 million in the first year of implementation, but
insurance premiums will rise across the board as a result.
Pennsylvania is now one of eight states with laws requiring insurance
reimbursements for autism diagnosis and treatment, according to Autism
Speaks, an advocacy group.
Nina Wall-Cote, director of the Pennsylvania welfare department's
Bureau of Autism Services, said, "There is definitely a move
nationally to usher this type of legislation through."
Autism Health Insurance Mandates Raise Costs
Analysts point out adding another coverage to the panoply of mandated
treatments raises health insurance costs by forcing all citizens to
pay for coverages the majority might never want or need.
In addition, at a time when states are more aware than ever of the
number of uninsured within their borders, the decision to add more
mandated coverages doesn't make much sense, said Michael Tanner, a
senior fellow at the Cato Institute.
"Government regulation that drives up the cost of health insurance is
a significant factor in denying health insurance to the working poor,"
Tanner said. "If government were to mandate that the only car anyone
could own was a Lexus, it wouldn't be long before the poor lacked
transportation. Sometimes people have to drive a Kia."
"State-imposed mandates force people to pay for more insurance
coverage than they want or need, and in effect place a legal ban on
low-cost, economy-model insurance," said Paul Guppy, research director
at the Washington Policy Institute. "It's like a hotel market with all
Hiltons and Sheratons, but no Motel 6."
Jeff Emanuel (emanuel@heartland.org) is The Heartland Institute's
research fellow for health care policy and managing editor of Health
Care News.
From a listmate
Please take the time to write a letter to the editor of the Globe and send it to: letters@globeandmail.com
Globe
SUPREME COURT
Ontario parents continue battle for accessible autism therapies
KATE HAMMER
August 28, 2008
It was four years in the making, a stolen glance in which, for the very first time, Anna Martini's eyes locked with her son Joshua's.
Never in Ms. Martini's life had eye contact seemed so precious.
Joshua Martini, now 11, was diagnosed with autism shortly before his third birthday. His mother credits therapies such as applied behaviour analysis (ABA) and intensive behavioural intervention (IBI) with bringing his wide brown gaze to connect with her own.
A class-action lawsuit brought by the Martinis and four other families against seven Ontario school boards and the provincial government has over the past three years fought and fumbled its way through levels of court, ending up at the Supreme Court of Canada. Elements of the lawsuit have been tossed out by judges and reborn in turn, and, in documents submitted yesterday to the Supreme Court of Canada, lawyers for the families hope to resurrect several more elements of the lawsuit they argue are essential to making ABA and IBI available to Ontario children affected by autism.
These elements relate to their rights to seek damages from the provincial government and to the basis on which their lawyers will argue for access to ABA and IBI therapies for their children in public-school classrooms.
A spokesperson for the Ontario Ministry of the Attorney-General confirmed the status of the lawsuit, but declined any further comment while the case remained before the courts.
ABA and IBI therapies are widely regarded as the most effective - perhaps the only effective - intervention available to children affected by autism. According to Noor Muhammad, executive director of the Autism Centre of Canada, a non-profit care organization, they are "one of the most scientifically proven therapies in the field of autism."
Ms. Martini and her husband, Umberto, spent their life savings, re-mortgaged their Woodbridge home, cashed their registered retirement savings plans and borrowed money from family to pay for one-on-one behavioural therapy for Joshua and his younger brother Noah, who was also diagnosed with autism.
Parents in Ontario are forced to make difficult decisions in order to secure provincial dollars to pay for these treatments. In order to receive funding, the minimum number of hours a child is required to attend therapy prevents them from also attending public school. The province will pay for private schooling that offers ABA and IBI therapies, but these facilities aren't numerous enough to be readily accessible to families throughout the province.
Many parents have to give up their jobs and drive hours every day, just to take their children to and from school, according to David Baker, one of the lawyers for the families.
Lynne Shane, another complainant in the lawsuit, said, "I want my son to go to school with his sister and all of the children on my street."
When her son began Grade 1, she tried taking him to public school and then bringing him home for 2½ hours of behavioural therapy in the evenings, but before long he began hiding under the kitchen table to avoid his therapist.
In British Columbia and New Brunswick, funding is available for children with autism to bring support workers specially trained in IBI and ABA therapy into public-school classrooms. In Ontario, the government will only pay for teacher's aides, and IBI and ABA therapists are not allowed in the classroom.
Teaching assistants often don't know how to address these children's special needs, and can inadvertently undermine therapy.
"Consistency is absolutely critical," said Michael Lewis, president of the Autism Society of British Columbia and vice-president of the Autism Society of Canada.
"Without the consistency between the intervention that's being delivered outside the school and inside the home or elsewhere, basically the aide becomes nothing more than a babysitter."
According to Mr. Baker, forcing parents to choose between access to public education and ABA/IBI therapies has driven many families to move to other provinces, or the United States, where more integrative programs exist.
"By forcing families to choose they save money," he said, adding that individuals trained in these therapies would not be much more expensive to employ than teachers' aides.
From a listmate
Monday, August 25, 2008
THE CHRONICLE-HERALD
N.S. autism group welcomes coverage call from NDP
Paul Pickrem
A Nova Scotia autism advocacy and support group is cautiously optimistic about the provincial NDP's call for coverage of autism spectrum disorder under the Canada Health Act.
But Vicki Harvey, executive director of the Autism Society of Nova Scotia, said she is still concerned that the range of lifelong services required by autistic individuals and by their caregivers might not be funded since the act only covers medical needs.
"If this was a way for providing funding for all the necessary services, I would support it," she said in an interview.
"I recognize the need for the development of a national policy. This might be a starting point."
Ms. Harvey said she worries that funding for respite care, necessary for the families of people with the disorder, and funding for speech and language therapy might not be considered eligible under the federal act.
NDP Leader Darrell Dexter said in an interview Friday that including autism services in the act would ensure people get all the funding they need because it would be up to the province to ensure a broad range of services would be available.
In July, Mr. Dexter said that two Nova Scotia physicians moved to Manitoba because there were better services available there for their autistic child.
End of mailing
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