Tuesday, February 5, 2008

Autism News Articles January 30th - February 3rd 2008

Autism News Articles
January 30th 2008-February 3rd, 2008

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Autism Class Action Lawsuit
at the Court of Appeal for Ontario
(Appeal hearing on a preliminary motion)

A crucial day in court that will determine whether
we will be allowed to continue the fight for full and timely access
to ABA/IBI intervention and in the schools

Monday February 11, 2008
at 10:30am

130 Queen Street West, Toronto
(at University Avenue, just west of City Hall)

Please join us to show your support for the families

For more information, please contact: t.sagharian@sympatico.ca

The Details

Autism Class Action Lawsuit (Sagharian)

In 2004, five families representing six children with autism filed a class action lawsuit against the Ministry of Education, Ministry of Children and Youth Services, and seven school boards in Ontario for failing to provide or fund ABA/IBI (Applied Behaviour Analysis/Intensive Behavioural Intervention) in the education system or without excessive and detrimental delays.

The plaintiffs have spent their savings, mortgaged and down-sized their homes, borrowed money and taken extra jobs to fund the services that their children require. They have had to make tough decisions about which services to access when they could not get both.

The case highlights key short-comings of services to children with autism. The families are suing the government and school boards for forcing the families of children with autism to make the impossible choice between the specialized services that help children with autism develop, and their right to a public school education. The families are also challenging the extensive waitlists for the AIP (Autism Intervention Program). The families want to ensure better access to publicly funded and quality services for children with autism in Ontario . They seek a change to the current approach to autism services, as well as compensation for the expenses that they have incurred as a result of the government and school boards’ past errors.

In 2006, the government and school boards brought a motion to strike the plaintiffs’ claim, and in March of 2007 a judge of the Superior Court of Justice, Mr. Justice Maurice Cullity, did strike portions of the claim. In response, the plaintiffs have appealed this decision to the Court of Appeal, with the hearing scheduled for February 11, 2008 at 10:30am.

In the aforementioned motion to strike, the government and school boards went after these families for $85,000 in legal costs. Fortunately for the families, Justice Cullity ruled in June 2007 that they should not have to pay these costs because they were raising an important public interest issue. In his decision, he stated:

"The public interest was involved not merely because this was Charter litigation but also because the community as a whole has a legitimate concern and interest in the welfare of disadvantaged children who are particularly vulnerable members of Canadian society.... It is not disputed that many of the parents have made significant financial sacrifices and have suffered serious financial consequences because of the lack of public funding for the programs they consider to be necessary for the educational and social development of their children. The fact that the Crown has now accepted a number of their contentions illustrates the value of this kind of public interest litigation and... the objectives of behavioural modification and access to justice are, I believe, sufficiently engaged to bear on the question of costs."

Autism Program in Ontario

In 1999, the province of Ontario, initially through the Ministry of Community and Social Services and now through the Ministry of Children and Youth Services, introduced the Intensive Early Intervention Program for Children with Autism (the “IEIP”, renamed the Autism Intervention Program "AIP" in August 2006) to provide services to children with autism. Initially, the program was only available to children under the age of six.

Both an Ontario Ombudsman report released in April 2004 and the report of the Office of the Provincial Auditor for Ontario in November 2004 identified several significant problems with the administration of the IEIP, including the difference between what it pays to the families and the actual cost of the treatment.

When Justice Kitely ruled in Wynberg/Deskin that the IEIP age cut-off violated the Charter’s equality guarantee under section 15(1), the government suspended the age cut-off (as of April 2005). This decision was over-turned by the Court of Appeal. Nevertheless, the IEIP/AIP has operated without discriminating based on age since Justice Kitely’s decision.

Unfortunately, the IEIP/AIP has long had a considerable waitlist that continues to result in eligible children not receiving necessary services. When the age cut-off existed, the waitlist was already so long that children would become ineligible for the program based on their age before ever receiving services. Since the elimination of the age six criterion for cut-off, the waitlists have become much lengthier, with the result that children with autism continue to be effectively denied necessary care.

The province spends millions of dollars every year on special education. In Ontario , all other children who require therapeutic or medical services are able to access services in a harmonized fashion alongside or with their education. However, when children with autism reach school age, they must either, enter a public school system that does not provide adequate education or support, where they will inevitably fail to improve and may regress, or enrol in a private program at considerable expense to their families and without the benefit of an integrated classroom setting. In contrast, children with autism in the United States are able to access ABA/IBI through the education system until the age of 21, and have been doing so for over 15 years.

Following the February 2007 recommendation in the Report of the Ministers’ Autism Spectrum Disorder Reference Group, Education Minister Kathleen Wynne announced that the Ministry would be directing school boards to provide ABA in their schools. This was an acknowledgment by the Minister that ABA was not previously being provided in school, that it could be, and that it should be. However, in a memo to school boards shortly afterwards, the Ministry indicated that ABA was already being used in some schools and that it would not be directing the use of IBI.

Then during the election campaign in the fall of 2007, the Liberal Party included in its party platform document the following promise:

“Helping more students with autism by providing $10 million to prepare schools to deliver IBI therapy on-site for the first time, a step forward made possible by our earlier decision to scrap the age-six limit for children with autism.”

Previous Autism Litigation in Canada

Auton: In 1998, families in British Columbia filed a lawsuit arguing that ABA is a medically necessary treatment and should be covered through the health care system. Although this case succeeded in the two lower courts in BC, it lost at the Supreme Court of Canada . The Supreme Court stated that the government did not have to provide ABA as ABA professionals are not registered health care practitioners and ABA is not delivered in a health care setting such as a hospital. Under provincial health care legislation, ABA could only be included as an add-on health service, in which case it would be at the discretion of the province as to how much to fund, which children would receive funding, and whether the province would fund the service at all.

Wynberg/Deskin: In Ontario, the Deskin case was filed in 1999 by a single plaintiff. This was followed by the Wynberg case filed in 2000, which eventually included 28 families. The cases were against the Ministries of Health, Education, and Social Services and were based on the Auton case. The families challenged the age cut-off in the IEIP as discriminating based on age and disability. They argued that the government acted negligently in the design and implementation of the IEIP. They also argued that the government breached their rights to life, liberty and security of the person by denying their children the benefit of an education.

When the 2004 Supreme Court decision in Auton was released, the Ontario cases had to reframe their claims, removing health and refocusing on ABA as an education issue. The Court allowed them to refocus their case, but prevented them from bringing evidence in support of this change in focus.

The Wynberg and Deskin cases succeeded at the trial court but then lost at the Ontario Court of Appeal. In denying their claims, the Court of Appeal specifically noted that it lacked significant evidence relevant to the case, including evidence related to ABA and education. It also stated that it was unfair for the comparatively small group of families participating in the case to get compensation while other families of children with autism languished. The trial judge, Justice Kitely, noted that the government had indicated that the school boards were the proper defendants to the claim and should have been a party. The families sought and were denied leave to appeal to the Supreme Court of Canada .

From Taline

Thanks to all of you who've shown an interest in our case. It's been wonderful to see so many families come forward and offer support. We look forward to meeting you in person one day, perhaps at the hearing next week.

We're sending this mailing in an effort to respond to some of your requests asking us to provide information on how you can support our case and the cause in general.

Here are just a few ideas:

Come down to the courthouse next week and attend the hearing. This will give an opportunity for the court to see the many faces of our community. The hearing is at the Court of Appeal for Ontario, 130 Queen St. West in Toronto.

Contact your local MPP by mail, email, telephone (see http://www.ontariotenants.ca:80/government/mpp.phtml for contact info) and share with them your situation and how you'd like them to help ensure that children with autism in Ontario have the publicly funded appropriate programs and services they need. Tell them about the ridiculous waitlists and how IBI and Education are mutually exclusive. Let them know that families are going to be in court next week on this matter and refer to our case.

Contact MPP Andrea Horwath, NDP autism critic with the same information:
Andrea Horwath, MPP
Queen's Park Office
Room 112, Legislative Bldg
Queen's Park
Toronto, Ontario
M7A 1A5
tel: (416) 325-2777
fax: (416) 325-2770
email: ahorwath-qp@ndp.on.ca

Contact MPP Frank Klees, PC autism critic with the same information:
Frank Klees, MPP
Queen's Park Office
Room 447, Legislative Bldg
Queen's Park
Toronto, Ontario
M7A 1A8
tel: 416-325-7316
fax: 416-325-1573
email: fklees@frank-klees.on.ca

Write to media about your situation. It is important for the public to be aware of what's going on right here in our Province with our children who are some of the most vulnerable citizens we have. This will encourage them to research and report to the public. You can also reach out to media by writing letters to the editor in response to articles they write about autism. They appreciate feedback from the public and occasionally print the letters they receive. Here is the contact info for the editors for a few of the major papers:
Star: lettertoed@thestar.ca
Globe: letters@globeandmail.com
Sun: editor@tor.sunpub.com

We know many in our community are financially limited due to having to provide for our children's programs but if any of you have the ability and would like to contribute financially to the case, you may do so by mailing in a cheque to our lawfirm:
Please indicate clearly on the cheque that the funds are for the Autism Class Action Lawsuit

672 Dupont Street
Suite 400
Toronto, ON
M6G 1Z6

Thank you for your support!

The Plaintiffs in the Autism Class Action Lawsuit

From AO

Subject: FOR DISTRIBUTION: Weekly News
Date: Fri, 1 Feb 2008 09:58:29 -0500
From: karyn@autismontario.com
To: karyn@autismontario.com
This message has been sent to all Chapter Presidents and Staff.
Please distribute it to your members.
Jobs at Autism Ontario
Make a difference in the lives of individuals with ASD and their families.
Discover the exciting opportunities to work with Autism communities across the province.

Date Posted: January 10, 2008
Position: Bilingual Realize Community Potential (RCP) Program Supervisor – Revised posting to a one year contract.
Organization: Autism Ontario
Closing Date: Revised closing date of February 1, 2008
Posting attached as a PDF file.
Date Posted: January 10, 2008
Position: Office Administrator (part-time)
Organization: Autism Ontario Toronto Chapter
Closing Date: February 8, 2008
Possibilities Fund Committee Update
The successful volunteers have now been named to our Possibilities Fund Committee. We are pleased to welcome Linda Gibson and Micole Ongman to the committee.
March Break Programs
Thank you to all who submitted a proposal for March Break activities. We will be notifying the Chapters of the status of their proposals over the next couple of business days. We are thrilled by the number of children and youth with ASD that will be able to take part in March Break activities as a result of this competition.

Vaccine news

Controversy over vaccine-autism link endures
Updated Sat. Feb. 2 2008 11:42 PM ET
Angela Mulholland, CTV.ca News
The belief that routine childhood vaccines can lead to autism remains one of the most stubbornly enduring.
The mainstream medical community insists there is no evidence to support the theory, and cite study after study that have found no link. Yet the Internet is filled with groups and organizations who insist that vaccines are causing children to become autistic.
The controversy returned to the headlines this week, when the American Academy of Pediatrics issued a call for ABC to cancel the debut episode of "Eli Stone," a new legal drama that also airs on CTV.
The episode featured a lawyer who argued in court that a vaccine caused a child's autism. The episode ends with the jury awarding the mother US$5.2 million after it is revealed the CEO of the vaccine-maker kept his own daughter from getting the company's vaccine because of autism concerns.
The AAP, which represents 60,000 U.S. pediatricians, noted that while the show included statements that numerous studies have refuted any link between autism and vaccines, the episode's conclusion leaves audiences "with the destructive idea that vaccines do cause autism."
ABC chose not to cancel the episode, but ran a disclaimer at the opening of the show stating the story is fictional. A message at the end referred viewers to a U.S. Centers for Disease Control website for information about autism.
The AAP has long campaigned against the misinformation linking vaccines to autism and has even dedicated a section of its website to clarify its position on the controversy. So how did this debate begin?
Study ignites controversy
It started in February, 1998, in the highly prestigious, British-based medical journal, The Lancet. There, British gastroenterologist Dr. Andrew Wakefield, along with 12 co-authors, published a small study on 12 children in which he claimed to have found a link between inflammatory bowel disease, autism and the measles-mumps-rubella vaccine introduced across the U.K. in 1988.
Most agreed that further research was needed and that parents should continue to have their children vaccinated with MMR. But, in the huge media feeding frenzy that followed, Wakefield suggested that parents should stop taking the vaccine and opt instead for each vaccine on its own.
That led to an almost immediate drop in immunization rates. Within a few years, MMR vaccination rates sunk to 75 per cent in Britain, well below the 95 per cent authorities say is needed to keep these diseases from circulating.
While the rate has since climbed to about 85 per cent, Britain continues to suffer outbreaks of these three diseases. In fact, it's suspected that a recent widespread outbreak of mumps in Canada was sparked by a single infection from Britain. And in March, 2006, a 13-year-old boy who had not been given the MMR vaccine became the first person in Britain in 14 years to die of measles.
Wakefield's research was attacked as flawed almost from the beginning. In fact, even his collaborators changed their minds. In 2004, 10 of Wakefield's 12 co-authors retracted their conclusions in the Lancet study. They stated:
"We wish to make it clear that in this paper no causal link was established between (the) vaccine and autism, as the data were insufficient. However the possibility of such a link was raised, and consequent events have had major implications for public health. In view of this, we consider now is the appropriate time that we should together formally retract the interpretation placed upon these findings in the paper, according to precedent."
Shortly before publishing the retraction, Lancet editor Dr. Richard Horton declared Wakefield had a "fatal" conflict of interest that his team was not aware of. Wakefield was doing paid research for a group of parents of autistic children who were trying to mount a class-action suit against the makers of the MMR vaccine.
Conflicts of interest?
Had his team known about those conflicts, Horton said he would never have published the study.
But even while Wakefield's theory on the cause of autism was losing credibility, a revised theory was emerging.
In 2003, David and Mark Geier, a father-and-son research team began publishing studies in a number of small journals in which they reported finding an association between thimerosal-containing vaccines and autism. They concluded that it wasn't the vaccines itself causing the illness, but the mercury-based thimerosal, which is used as a preservative.
The Geier studies might have been ignored if not for the fact that a few years earlier, in 1999, the Centers for Disease Control (CDC) and the American Academy of Pediatrics (AAP) asked vaccine-makers to remove thimerosal from vaccines as quickly as possible. This move came after they realized that since 1991, children receiving routine vaccines had been getting amounts of thimerosal that might push them over accepted levels of mercury.
The move was said to be simply cautionary. But it sparked confusion and led some to declare there had been a government cover-up of a widespread health risk. Shortly after, the lawsuits against vaccine-makers was launched.
The debate moved mainstream when such celebrities as Jenny McCarthy and Bobby Kennedy Jr. began insisting that the link between vaccines and autism was clear and that vaccine-makers were refusing to accept responsibility.
Since then, numerous large, peer-reviewed studies have been published that have found no link. The most recent came earlier this year. Researchers from the California Department of Public Health Autism found that the reporting of autism cases in that state continued to climb even after from 1995 to 2007 -- long after thimerosal was removed from routine childhood shots. Doctors noted that if the vaccines really were causing autism, rates should have dropped.
Despite the many studies pouring cold water on the anti-vaccine side, the debate continues 10 years later, with dozens of websites across the Internet encouraging parents to refuse to allow their children to be vaccinated.
Sadly, while the voices of those parents who have defied general medical advice ring loud, the voices of those parents who have watched their children die or become disabled from such diseases as polio, meningitis, and hepatitis are rarely heard. Vaccination has been called the single greatest medical intervention over the past century and has saved so many lives that most of us have never seen the diseases they prevent. Yet, many parents still choose not to vaccinate their children.
Since his 1998 study, Wakefield has lost his position with the British National Health Service and now works for a non-profit centre for autistic children in Texas, called Thoughtful House. While he continues to assert that the results of his 1998 study are still valid, the General Medical Council, the British body that investigates alleged malpractice by doctors, decided to take action.
This past July, the GMC began hearings into allegations that Wakefield and two colleagues behaved unethically and dishonestly in conducting their research. The hearings had been expected to last months but after the prosecution case was presented, the panel suspended proceedings and defence presentation until March, 2008.
Shortly before those hearings began, Wakefield agreed to an interview with U.K.'s The Observer, which he ended by declaring: "My colleagues and I won't be deflected by the interests of public health policymakers and pharmaceuticals. I want to help children with autism; they are my motivation. If the work ultimately exonerates the vaccines, that's fine. If not, we need to think again."

From a listmate
York Region

Family hopes study will shed light on autism

The Bond family of Stouffville, Joshua (from left), father, Stewart, mom, Lisa, and daughter, Rebecca, 14 stand outside their house during the holidays. The Bond’s son, Joshua, suffers from autism and the family hopes to learn what causes the disease. The family participated in a study.

Jan 30, 2008 09:13 PM

By: Michael Power
For Lisa Bond and her husband, Stewart, simply learning what caused their son’s autism is more than fair trade for their participation in a recent study.

“Until now, nobody has been able to tell us why this is happening or put a label on it,” said Ms Bond, a Stouffville resident. “Just knowing changes things; it’s just more peaceful.”

The Bonds’ son, Joshua, 12, was one of only four Canadian children whose condition was linked to missing information in his 16th chromosome. That absence is associated with some of the traits associated with his autism, including difficulty with speech and some of his gross motor skills.

The study, which included about 400 subjects, began five years ago, said Ms Bond, who also has a daughter, Rebecca. It involved blood work, answering several questionnaires and detailing their family history for researchers. Joshua's inclusion in the study happened with his ties to the Hospital For Sick Children.

And although the results, which the Bonds learned in early January, won’t change Joshua’s condition, it might help families understand the condition and get autistic children the right treatment sooner.

“It doesn’t mean things will get better, but now we know how to help him,” Ms Bond said.

Autism is now diagnosed by looking at a person’s communication, behaviour and developmental skills. Characteristics of the disorder vary and a child should be evaluated by a team that can include a neurologist, psychologist, speech/language therapist and others.

So the earlier children are diagnosed, the earlier therapy can start, said Bruce McIntosh, a Concord resident whose son, Cliff, is autistic.

“If the kid isn’t talking at two, there’s some concern, but it doesn’t necessarily mean autism,” said Mr. McIntosh, who is active in promoting autism issues with the federal and provincial governments.

Any tools that can be used to help diagnose the condition earlier would help get treatment started sooner, he said. Research indicates starting treatment early can help autistic children benefit from therapy.

Along with existing tools for diagnosing autism, information revealed through the study will help test for changes in genes, said Stephen Scherer, a senior scientist at Sick Kids and lead researcher on the study.

A test scanning a person's genes can show if they are carrying a change in DNA that could lead to the development of autism.

That could help families get an earlier diagnosis of a child’s autism, which would help parents get children into related programs.

“It’s really an eye-opening set of experiments for us,” Dr. Scherer said. “We now have a much better understanding of what’s going on with respects to the genetics in autism.”

When they got the results of the study, Joshua's parents didn't want their son to think he was missing something, Ms Bond said. So they reminded him of the trips they took to Sick Kids while the study was going on.

Researchers were able to learn some important stuff from the tests performed on him and other children, they told Joshua. But the information Joshua provided was just a little bit more helpful.

“They were able to learn something extra special from you,” they told him.

From a listmate
Ask Lindsay Moir:
High school preparation for an exceptional student
Friday, February 01, 2008
We have just recently come from a "High School Orientation Night" for our Grade 8 daughter. Although she is exceptional, she is relatively high functioning and with support she is capable of doing grade appropriate work. At this meeting we had 10 minutes with the high school Special Education Resource Teacher who spent our time telling us of the many severely-challenged students she is suppoting. The "implied" message is that our daughter is not likely to get support because she is "not severe" enough!
In the presentation to the whole Grade 8 there was a strong pitch about academic standards and "meeting the challenge and not lowering the bar". Again, this suggested to us that accommodations and modifications were not going to be provided. Our daughter has been supported with resource time and accommodations for the past 5 years. Her Grade 6 EQAO testing was Level 4 (above grade expectations).
We have a meeting with the high school next month — any strategy tips?
--"worried parents"
I want to assure you that:
the board's obligation to meet your daughter's needs does NOT end after Grade 8. High Schools have the same obligation to provide support as your elementary school.
The "IEP Resource Guide 2004" on the Ministry of Education website provides many excellent examples of what a High School Individual Education Plan (IEP) should look like. Become familiar with these examples BEFORE your meeting.
There are many different ways to support your daughter beyond the Resource Teacher. Student mentors, peer tutors, college placement students are some of the possibilities. Just because paid board resources are limited or dedicated to "more severe" students, does not excuse the high school from meeting your daughter's needs
Her are some general pointers for special education in a High School:
• The way that high schools are organized (subject departments) is an impediment to effective communication. Make sure that a meeting of all your daughter's teachers is scheduled for the first week of EACH semester. The purpose of this short meeting is to alert the teachers to the accommodations necessary — your daughter's IEP is in the Guidance Office or the Special Education Resource Office — her Math teacher ot Phys Ed teacher will likely never see it unless you create a forum to share key strategies. Most teachers will follow through if they are made aware. Write this meeting into her plan.
• Consider "pre-teaching" rather than "remediation". If your daughter was taught key points ahead of time she would be able to learn and participate in class discussions and activities. Sitting through a class when you aren't "getting it" can be very frustrating. The teacher and classmates may form unconcious negative thoughts about her abilities. Your daughter may lose confidence and develop a negative self-image. Studies in the USA support the fact that "pre-teaching" is effective in a high school special education environment, particularly when it comes to motivation and self-esteem. Use resource time or senior students to "prep" your daughter so she can do well in class
• Reduce the load. Students can take till age 21 to complete high school - there is lots of time to get enough credits to graduate!! If a student takes 4 credits each semester, then extra help has to be done outside of class time. If the student takes 3 credits and 1 resource period ( NOT a "SPARE"), then there is 76 minutes each day for pre-teaching and extra help.
• Have specific goals and objectives for Resource Time. Make sure that we have a specific plan and clear expectations for this period. It is not a "Homework" period — it is not a "Spare". It is not "Free Time". It is not up to your daughter to "ask for help if sghe needs it". This is expensive "instructional time" You need to identify the specifics of this instruction — who does it, what kind of instruction will it be, what resources need to be in place, how will classroom teachers communicate to the resource teacher about what needs to be done? Lack of a written plan, often means that this time is "frittered away"...
• Have high (but realistic) expectations. There is an unfortunate tendency to have academically-competent special education students drop to the Applied or Life Skills stream because they can function there without support!! It is easier for the school to do this, but your expectation has to remain that your child needs to be challenged and supported at the highest level they are able to learn. Your daughter's EQAO results suggest she is capable of taking the Academic stream with support. There is nothing wrong with taking Applied, Essentials, or Life Skills courses if they are appropriate for the student's level of functioning or interests. Insist that choosing courses is about "what the student needs" not about"what is easy to provide".
• Find a "Case Manager". Because high schools are large and organized in subject departments, and students deal with many teachers every year, and because the average high school teacher teaches close to 180 students every year, special education students can easily be lost in the numbers. In elementary schools there is "collective memory" about your child and what works and what doesn't. Usually, last year's teacher can easily coach this year's teacher. Even in Grade 7 or 8, there is a homeroom teacher who teaches your child for a large chunk of the day. "Ownership" and responsibilty tends to clear... This is not automatic in the high school. Try to identify the "case manager" who will manage your child through their high school years. Build that person's knowledge base about your daughter and her exceptionality. Use this person as your key contact and on-site manager. In the everchanging rotary system, develop a consistent, informed supporter. Advocating from within is very effective.
• Teach self-advocacy. High school is a good place to ensure that necessary self-advocacy skills are taught. Yes, this should have begun earlier, but let's face it parents and elementary teachers tend to "smooth out the bumps" and solve all the problems for many exceptional pupils. The Learning Disabilities Association (LDAO)has many excellent resources and "curriculums" on teaching self-advocacy. These materials are applicable to many other exceptionalities. Self-Advocacy is a developed skill and needs to be taught over time. We cannot assume that exceptional students will instantly acquire this skill through "osmosis" simply by entering the high school environment. Self advocacy is a "life skill" that your child will need as an adult. Develop it.
I hope that these tips will help you to develop a relationship with your high school that will ensure the success of your exceptional child.
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.

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