Saturday, May 12, 2007
On Wednesday, May 9th, there was a meeting held at Bakerlaw with many autism advocates. At this meeting, David Baker updated us all on the status of the Sagharian case.
In summary from that meeting, this is a crucial time for all of us to lobby our children's issues and the June court appearances for the below cases I outline. NDP MPP Martel has announced her steadfast and ongoing commitment to autism issues. She had a meeting with David Baker and has offered numerous suggestions to the firm on how autism issues should continue to be publicly raised in these months leading up to the October election. She has also offered her resources, and given her full cooperation and personal assistance for these families as they move ahead on their cases. The Liberals will want to set things as right as possible before the next election to win the vote from public opinion and the autism community. The Tory's have made their announcement regarding autism issues, they will commit $75 million to the under age 6 children and work at clearing the under age 6 kids from the waiting list. They have not made any announcements regarding the school age children at this time.
The Sagharian Class Action is a Class Action with a primary argument against education. Seven School Boards, the Ministry of Education, and the Ministry of Children and Youth Services have been named in that case. If they were to win, it would mean a win for all Ontario ASD children. The Justice who reviewed the case to make a decision on whether the case could be heard, made a decision to not allow it to continue in the courts. The families have made a difficult decision to appeal, even though it now means risking the court costs for the appeal and the motion to strike. There are 5 families involved, if they loose their appeal, they will be forced to pay the government all court costs. It's risky what they have taken on, but have done so as they feel their case has merit and will benefit all children. The government and school boards are taking these families to court sometime in June (exact date to be determined later this month) to argue costs for the motion to strike.
They need our support - and I hope everyone feels the way we at the meeting felt, they deserve all the support we can give them. The families will face financial ruin should they loose the appeal, and they are doing this for the benefit of your child and mine.
Ellie Venhola offered a brief overview of the current status of the Ontario Human Rights Cases. There are 109 cases dealing with the Ministries of Education, Children's Services and various school boards - there are about 2/3 of Ontario School Boards named. There are an additional 7 cases dealing with school boards services of speech and OT, etc. They are meeting with counsel at the end of May and expect to be in court in September. Hearings may take 6-9 months for these cases. They will be issuing a media release sometime in June regarding the cases and their current status.
But also, we have the case against MPP Shelley Martel coming up in court on June 18th. To remind everyone of this one, Shelley applied through the Freedom of Information Act to have the McGunity government release the data on all costs to fight our families in court. The Premier has denied and appealled this request to the highest appeal. The Infomration and Privacy Commission, who is the governing agency for the Freedom of Information Act, has ordered the Premier to release this information at all levels. Instead of releasing the information, the Premier has filed suit against MPP Martel and the Privacy Commission.
Shelley is to appear in court on June 18th. Here is a message received from her office:
Shelley's court date will be Monday, June 18th, at Osgoode Hall, 130 Queen St W at University Ave, Toronto. The exact court room will be decided closer to the date.
The proceedings are scheduled to commence at 10:00 am, therefore we're planning a press conference at 9:30 am in front of the Hall.
Please be sure to send this note to your list serve, we want to ensure as many families as possible can attend.
I hope that you are able to arrange your schedule for June 18th to attend at Osgoode Hall. We need to show that we are not ready to give up on what we are asking for our children, and that we will support each other in all of these efforts on our children's behalf.
Hope to see you all on June 18th at Osgoode Hall.
Vote now FOR FAMILY WITH AUTISTIC CHILD – BACKYARD MAKEOVER
It's so important for this family to win this backyard makeover. The family with the most votes wins, so they are really counting on the autism community to help them out here. You can only vote this week - once a day for each valid e-mail address you have:
Here are the details on how the voting works:
Go to http://www.sunlightlaundry.ca/story/ and click on the CONTEST link at the bottom of the page.
These pages are animated and load somewhat slowly if you're not on highspeed internet service.
You'll then see a box for the "Outdoor Makeover" where you click on the "ENTER NOW" button. You'll go through one more "continue" screen and then you can click on Lianne's picture. Stay tuned because you have to click one more time and enter a name and e-mail address for the vote to count. You can vote once each day for each valid e-mail address you have.
Let's get Clicking For Carter!!!
An interview with a member of the AFA.
Attached is an interview that Sam Yassine from the Alliance for Families with Autism (AFA) had with voice print on the Senate Report, please have a listen and feel free distributing to all our community and government stakeholders.
Attached please find the MACSE consumer feedback form. Please disseminate this to anyone who should receive it and may want to provide input on issues and practices that have an impact for students with ASD across the province. If possible can completed forms be returned to me by May 30th. Thank-you.
Jennifer Cantello DawTraining Institute ManagerGeneva Centre for Autism
112 Merton Street Toronto, ON , M4S 2Z8 (416) 322-7877 ext. 227
MINISTER’S ADVISORY COUNCIL ON SPECIAL EDUCATION
COMMUNICATION: COLLABORATING WITH THE COMMUNITY- Autism Spectrum Disorders
(Make a Table
Data and sources
Successful practices of the source
Challenges and issues
Please return to Jennifer Cantello Daw email: email@example.com or fax (416) 322-5894 by May 30, 2007.
INSTRUCTIONS FOR COMPLETION OF THE
COMMUNICATION: COLLABORATING WITH THE COMMUNITY FORM
This form is intended to be used by individuals who wish to provide information to the Minister’s Advisory Council on Special Education on successful practices; issues or challenges as well as to identify possible solutions in the area(s) of Exceptionalities and/or interest(s). The completed form should be mailed to the appropriate representative on Council.
Information about successful practices, issues or challenges as well as possible solutions should be entered in the appropriate column of the chart. The name of the organization or an individual which is the source of the information and the consultation date must be entered in the first column of the chart. If the source is an individual, his/her identity should be protected by using a generic term like “parent” or “teacher”, etc.
Members who collect detailed information from constituents are requested to complete a summary form containing the most salient issues identified by their constituents and to provide that summary to the Council Chair indicating that more detailed information is available to any member who wishes it. Some members distribute this form to the organizations in their constituency and ask them to complete the form. This approach provides detailed information which may be very useful to the member but it also often provides more detail than can be easily assimilated by other Council members.
The summary of most salient issues should be submitted by the Council Member to Council Chair prior to each regular Council meeting. The completed forms will be copied and distributed to all members at or shortly following each regular Council meeting.
Avicena and University of Cincinnati Announce Defective Creatine Transporter Gene Present in Autistic Patients
May 8, 2007
PALO ALTO, Calif., May 8 /PRNewswire-FirstCall/ -- Avicena(R) Group, Inc. (OTC Bulletin Board: AVGOE), a late stage biotechnology company focused on commercializing its proprietary cellular energy modulation technology, announced today that Dr. Amy Newmeyer, M.D., of the University of Cincinnati, will present results indicating that the defective creatine transporter gene (SLC6A8) is present in autistic patients. The results of this screening study will be presented at the Academic Society's Annual Pediatric Neurology Meeting in Toronto today.
Defects in the creatine transporter gene (SLC6A8) have been linked to mental retardation and certain learning disabilities typically characteristic of autistic patients. The screening study, which was conducted among 100 male autism spectrum disorder patients aged three to 18 years of age, revealed a 1% incidence rate of the defective SLC6A8 gene.
"These results are in line with previous studies which showed an up to 2.1% incidence rate of the defective Creatine Transporter gene amongst X- linked mental retardation." stated Belinda Tsao-Nivaggioli, Chief Executive Officer of Avicena. "At this level, Creatine Transporter Defect (CTD) is the second most common cause of X-linked mental retardation."
Avicena, in collaboration with Dr. Ton DeGrauw of the Cincinnati Children's Hospital Medical Center and Dr. Joe Clark of the University of Cincinnati Medical Center are already developing a model that will allow for the rapid screening of carriers and patients who exhibit the general characteristics associated with CTD.
"We have made significant progress since discovering this genetic defect in 2001," said Dr. Joe Clark. Avicena, in collaboration with the University of Cincinnati and Cincinnati Children's Hospital, is developing potential therapies for the treatment of CTD. Further, the development of a screening model will allow us to rapidly and more broadly screen not only patients that exhibit mental retardation, but also the incidence of CTD in other areas including developmental delay conditions, learning disabilities and neurodegenerative diseases. This may result in a significantly higher incidence rate of CTD in a broad spectrum of neurological disorders.
ABOUT THE SCREENING
One hundred male subjects aged three to 18 years with a diagnosis of autism spectrum disorder or a non specified pervasive developmental disorder (PDD-NOS) based on DSM-IV criteria were either recruited from the Cincinnati Children's Hospital Medical Center or identified from the Autism Genetic Response Exchange database. All subjects were administered the ADOS (autism diagnostic observation schedule) to confirm the presence of autism or PDD-NOS. Blood samples were obtained from all subjects for a DNA sequence analysis to identify defects in the creatine transporter gene (SLC6A8). Urine and blood samples were also obtained from patients and analyzed for Creatine and guadinoacetate levels.
ABOUT CREATINE TRANSPORT DEFECT (CTD)
Creatine Transporter Defect, an X-linked, inherited error of metabolism, was identified in 2001 in collaboration between Avicena and researchers at the University of Cincinnati and Cincinnati Children's Hospital Medical Center. CTD prevents the successful transport of sufficient levels of creatine across the blood brain barrier via the creatine transporter. Patients may suffer from autistic like symptoms as well as moderate to severe speech and language impairment, short attention span, and low IQ. CTD has been shown to affect both males and females. However, the severity of the mental retardation is significantly magnified in male patients due to the fact that the defect is located on the X-chromosome. CTD is presently diagnosed using either magnetic resonance imaging (MRI) examination or through DNA analysis.
Avicena Group, Inc. is a late stage biotechnology company focused on developing products based on its proprietary understanding of the regulation of cellular energy processes. The company's core technologies, supported by a robust IP portfolio, have broad applications in both pharmaceuticals and dermaceuticals. Avicena's pharmaceutical program centers on rare neurological disorders (orphan diseases). The company is currently analyzing survival data from its Phase IIb/III trial in ALS (Amyotrophic Lateral Sclerosis, or Lou Gehrig's disease). Near term, Avicena intends to initiate a Phase III trial in Huntington's disease to accompany its on-going Phase III trial in Parkinson's disease. Avicena's science is well established and its products are safe and well tolerated. Unlike traditional biotechnology companies, Avicena's clinical programs are largely funded by government and non-profit organizations. Avicena presently derives revenue from the sale of proprietary ingredients to skin care manufacturers.
This release may contain forward-looking statements within the meaning of the federal securities laws. Such forward-looking statements reflect, among other things, management's current expectations, plans and strategies, and anticipated financial results, all of which are subject to known and unknown risks, uncertainties and factors that may cause our actual results to differ materially from those expressed or implied by these forward-looking statements. Many of these risks are beyond our ability to control or predict. See "Risk Factors" under "Item 6. Management's Discussion and Analysis of Financial Condition and Results of Operation" from our Annual Report on Form 10-KSB for the year ended December 31, 2005, and other descriptions in the company's public filings with the Securities and Exchange Commission for a discussion of such risks, including the company's need for additional funds, the company's dependence on a limited number of therapeutic compounds, the stage of the products the company is developing, uncertainties relating to clinical trials and regulatory reviews, competition and dependence on collaborative partners, the company's ability to avoid infringement of the patent rights of others, and the company's ability to obtain adequate patent protection and to enforce these rights. Because of these risks, uncertainties and assumptions, you should not place undue reliance on these forward-looking statements. Furthermore, forward-looking statements speak only as of the date they are made. Avicena does not undertake any obligation to update or review any such forward-looking information, whether as a result of new information, future events or otherwise.
The Ruth Group (on behalf of Avicena Group)
Stephanie Carrington / Sara Ephraim / (investors)
(646) 536-7017 / 7002
Janine McCargo / Jason Rando (media)
(646) 536-7033 / 7025
SOURCE Avicena Group, Inc.
Mental Health Services Helping More Children And Youth In Guelph Succeed
May 8, 2007
GUELPH, ON, May 8 /CNW/ -- McGuinty Government Investments A Boost For Ontario's Most Vulnerable
GUELPH, ON, May 8 /CNW/ - Minister of Children and Youth Services Mary Anne Chambers met today with children, youth and families facing mental health and behavioural challenges to talk about new investments that are helping three Guelph community agencies provide more programs and services.
"When our government took office almost four years ago, we realized priority had to be given to ensure children and youth with mental health challenges would receive the support they needed to achieve their potential like other children and youth," said Chambers. "That's why our government has increased funding for child and youth mental health agencies by nearly $80Âámillion since 2004. And that's why we will continue to strengthen community programs and services to ensure that children and youth get the mental health services they need delivered in an integrated and holistic way."
Nearly $181,000 in new funding will benefit three Guelph and area agencies - Community Mental Health Clinic, YMCA-YWCA of Guelph and Hopewell Children's Home in Ariss. The funding is part of an additional $24.5 million annual investment across the province and builds on previous investments in more than 260 child and youth mental health agencies and 17 hospital-based outpatient programs.
This is the second increase in base annual funding to the child and youth mental health sector by the McGuinty government since 2004. Prior to the 2004 budget, the sector had not received a base increase for 12 consecutive years.
The Community Mental Health Clinic of Guelph has also been selected as a new site in the Ontario Telepsychiatry Program and will receive $10,000 to support telepsychiatry services, as part of the ministry's $1.5 million expansion of the program provincewide. The telepsychiatry program enhances community mental health services in rural, remote and underserved communities by using videoconferencing to provide access to a child psychiatrist for consultations, training and support. The expanded program is providing approximately 1,400 consultations annually provincewide.
"This new funding will improve service to the children, youth and families who will use mental health services in our community," said Fred Wagner, Executive Director of the Community Mental Health Clinic, site of today's announcement. "And the telepsychiatry program means they will now have improved access to the psychiatric consultation services they need while remaining close to home."
"Our government believes it is important for children, youth and their families to access supports and services as close to home as possible," said Liz Sandals, MPP for Guelph-Wellington. "We are working hard on many fronts to make a real difference for our province's most vulnerable young people and to respond sooner to their families' needs."
"We owe it to our most vulnerable citizens to do all we can to help them reach their full potential," said Chambers. "By strengthening community programs that support our young people, we are helping more children and youth succeed in school and become healthy, productive adults."
STRENGTHENING MENTAL HEALTH SERVICES IN GUELPH
In 2007-08, the Ontario government is investing an additional $24.5Âámillion across the province to enhance child and youth mental health services. This new funding will be shared in the following three ways among community-based organizations that provide services to children and youth with social and behavioural problems and mental health challenges, some of whom may have other special needs such as autism spectrum disorder:
1) A five per cent increase in base annual funding to child and
youth mental health agencies, totaling $18 million, to reduce
wait times and help address cost pressures. In Guelph, three
agencies will receive a total of nearly $181,000 in additional
This is the second increase in base annual funding for the
children's mental health sector provided by the McGuinty
government since 2004. Prior to the 2004 budget, the sector had
not received a base increase for 12 consecutive years.
Agency 5% base increase
Community Mental Health Clinic of Guelph $152,947
YMCA - YWCA of Guelph $1,920
Hopewell Children's Home $25,965
2) $4.5 million in regional annual allocations to address
community priorities based on the ministry's new Policy
Framework for Child and Youth Mental Health, of which the
ministry's Central West region will receive $1,027,400.
Investment decisions will be made through a collaborative,
3) $2 million annually that would enable agencies to provide
immediate children's mental health support when a local
community is faced with an extraordinary crisis or
The ministry's telepsychiatry program is a creative solution for increasing access and reducing wait times for children and youth in rural, remote and under-served communities. It provides access, via videoconferencing, to a child psychiatrist for consultations, training and support purposes. It also provides agency staff with vital education and training.
An additional $1.5 million investment this year brings the government's total investment in the telepsychiatry program to $2.4 million annually. These funds will support service delivery to 10 new rural, remote and/ or underserved communities across the province through two new hubs to Ontario's existing telepsychiatry network. The program's capacity will be increased to provide approximately 1,400 consultations annually.
The two new hubs will deliver services to community agencies and are expected to be operational in May 2007. They are:
- a "Western Hub" in London, operated by the Child and Parent Resource
- an "Eastern Hub" in Ottawa, operated by the Children's Hospital of
The Hospital for Sick Children is currently the only hub, delivering
services to 14 community agencies in rural, remote and underserved areas
across the province.
The Community Mental Health Clinic of Guelph has been selected one of the
10 new sites and will receive $10,000 to support telepsychiatry services.
We've taught Allison to speak, to tie her shoes; This is the fifth instalment of a special series on autism. Today: the high cost of therapy, and a mother's determination
The Vancouver Sun
Apr 26, 2007
By: Pete McMartin
Bev Sharpe has a big anniversary coming up next month: It was 10 years ago in May 1997, that her daughter, Allison, was diagnosed with severe autism. Allison was two. Back then, the services available to parents of children with autism were more limited than they are now, and government subsidies for therapy were non-existent.
Nonetheless, after a couple of months of research, Bev decided Allison needed an expensive and intensive therapy known as Lovaas ABA. It called for up to 40 hours a week of in-home intervention with a team of therapists.
It was also horrifically expensive. Lovaas, at present, can cost anywhere between $40,000 and $60,000 a year.
Despite the cost, Bev believed Lovaas was the only therapy that could give Allison a chance at a life in the real world, and Bev was adamant she have it. It was the only treatment backed up by data that proved its effectiveness.
Since there were few Lovaas practitioners in B.C. at the time, Bev placed ads all around the Lower Mainland, hired a team of 10 applicants and paid to have them trained by a consultant Bev brought in. The three-day training session cost $5,000.
Allison started her Lovaas therapy three months after her diagnosis, on July 21, 1997.
Ten days later, on Aug. 1, Bev and her husband split.
The couple's divorce was finalized two years later.
They divided their assets, and Bev bought her husband out of his share of the house. It was a modest but comfy place on Marine Drive in West Vancouver, and it was perched on a rock ledge that afforded a knockout view of English Bay. It was there that she, Allison, and her son, Jackson, who was a healthy, normal child three years older than Allison, would face an uncertain future together.
Certainly, the recent past had been difficult enough. Allison's autism was profound. She was completely non-verbal. As a toddler, she never crawled, or exhibited any curiosity about things around her. She made no eye contact or acknowledged the presence of other people. Allison engaged in self-stimulatory behaviour, too, like flapping her hands or snapping her fingers. She resisted toilet training, and engaged in feces-smearing. She refused to sleep through the night.
Those first few years of therapy for Allison were a financial shock. The provincial government only began to fund autism therapy with any significance in 2002, but in 1997 and 1998, there was no funding, and in the first two years of Allison's treatment, Bev spent on average $25,000 each year, not counting the expense of a full-time nanny. Even at that, it wasn't enough to fund all the therapy Bev felt Allison needed.
"I couldn't afford to do the 40-hour-a-week [Lovaas] program," Bev said. "I was strapped."
She had child support of $1,000 a month from her ex, but it wasn't enough. So she worked all the overtime she could get at her job as a meat inspector. ("I believe I'm the only vegetarian meat inspector in B.C.," Bev said.) She cashed out her vacation time. She remortgaged the house, twice. She went deep into a line of credit.
It still wasn't enough.
She could have sold the house, but her team of doctors at Childrens' Hospital said Allison's domestic situation should not be changed.
She decided to take in boarders.
To do that, the house needed renovating, and Bev set about doing much of it herself. She bought or borrowed tools from her neighbours. She would come home after work and strip paint or put up Gyproc. The renovation took her two years.
She eventually took in three boarders. To do that, Bev had to give up her bedroom.
She now sleeps on a small foamy on her living room floor.
Allison's therapy, though, proceeded. In addition to going to school, Allison did (and still does) in-home therapy of 30 hours a week with a therapy team who come into the home every day. For four days of the week, she has three-hour sessions; for the other three days, she has six-hour sessions.
Lovaas therapy is rigorous, and relentless. It breaks down simple tasks into even simpler components which, to a normal child, is the stuff of their natural development -- things like identifying colours and everyday objects, interacting with others, vocalization, simple math. But the subject, ideally, improves slowly and steadily by repetition and positive reinforcement.
This, Allison did.
"It's been 10 years of therapy," Bev said, "and we've taught Allison how to speak, how to tie her own shoes. She can use the toilet by herself, eat appropriately at a table with her family, dress herself, do laundry -- the daily living skills."
It's also given her a chance at a future.
"The child's not in an institution," Bev said. "She has a life here.
"And the goal, ultimately, is to give her enough skills so she can one day operate in the real world."
She can, for example, take Allison out in public now, for a short time. Her record -- Bev timed it -- is 17 minutes at a local Starbucks. Recently, they went on their first vacation together, to Disneyland. It took five months to prepare Allison for the trip, of showing her pictures of the plane, of explaining step by step what they would do once they got on it. The trip went without a hitch.
For Bev, Allison's progress validated her decision to go with Lovaas. She became a committed advocate of it. She joined FEAT of B.C. -- Families for Early Autism Treatment -- and hers was one of 23 families which took the provincial government to court in the late 1990s. FEAT wanted autism recognized as a medical condition that deserved fully-funded treatment, and that treatment, FEAT maintained, should be one backed by science -- in other words, Lovaas.
Lovaas was devised by Ivar Lovaas, a psychologist out of UCLA who revolutionized treatment in the late 1960s when he used the techniques of B. F. Skinner's applied behavioural analysis research on children with autism. In a study published in 1987, Lovaas found that almost half of his 19 test subjects showed improvement to the point they were indistinguishable from neurotypical children, while the majority of the other half showed some progress.
FEAT's litigation, which went all the way to the Supreme Court of Canada, will be dealt with elsewhere in this series, but in short, it essentially embarrassed the government into beginning its present system of parent-directed discretionary funding for therapy in 2002. While FEAT won a subsidy of $20,000 annually for children under six, and $6,000 annually for children between six and 18, those monies are nowhere near enough to fund Lovaas in its entirety.
But since Lovaas's paper in 1987, a kaleidoscope of therapies have been developed, some of which use applied behavioural analysis techniques.
There are now many parents in B.C. who have adopted these therapies, and who feel Lovaas is not right for their children. They dislike the idea that FEAT insists the government should fund only Lovaas, and they especially dislike the implication -- encouraged by FEAT, some say -- that they are doing wrong by their children by not using Lovaas.
It has led to a split in the autism community of incredible rancour. Depending how one cares to look at it, it has caught the government in the middle of a crossfire, or allowed it to play one side of parents off against the other.
For Bev, however, the proof is looking her in the face. Literally. Allison makes eye contact now. Allison has a life. Bev spent $26,000 last year on her treatment and felt every penny was well spent.
After all, she said, it was 10 long years ago that, after only after six weeks of intensive Lovaas therapy, her daughter said her first word.
It was "Mama."
firstname.lastname@example.org or 604-605-2905
Colour Photo: Glenn Baglo, Vancouver Sun / Allison
Marshall's autism was profound. As a toddler, she was completely
non-verbal. She didn't crawl or exhibit any curiosity about things
around her, and she would not make eye contact or acknowledge the
presence of other people. After 10 years of Lovaas therapy, she can
go out in public, including taking a recent trip to Disneyland.
Colour Photo: Glenn Baglo, Vancouver Sun / A 'high-five' for a
successfully completed task.
Colour Photo: Glenn Baglo, Vancouver Sun / Therapist Darlene
McIntosh works with Allison to help her count money.
Mothers lead the fight against bureaucracy, courts; Dynamic duo Freeman, Lewis force government to fund treatment
The Vancouver Sun
Apr 26, 2007.
By: Pete McMartin
Despite what some people think of them -- and there are those who would prefer not to -- two of the most tenacious and heroic women in B.C. are Sabrina Freeman and Jean Lewis.
For what they did, they deserve, at the very least, the thanks of every family in the province who has a child with autism. The Order of Canada wouldn't hurt, either.
Both are mothers of children with autism.
In 1996, Freeman founded Families for Early Autism Treatment of B.C. -- Canada's first autism treatment advocacy group. Lewis joined soon after.
"We exist for one reason," Lewis said, "that science-based treatment for autism be included in universal health care."
Freeman is a Stanford-trained sociologist and lives in Langley. Lewis lives in West Vancouver. Her husband, Michael, is president of the Autism Society of B.C.
More than anyone in this province, Freeman and Lewis are responsible for forcing the provincial government to fund -- to the limited extent they do now -- autism treatment.
As Lewis put it:
"If it wasn't for FEAT, nobody would be getting any treatment money today. If it wasn't for what our organization did, no child in B.C. -- and further to that, no child probably in this country -- would be accessing treatment money."
What FEAT-B.C. did was fight.
In 1998, it took the provincial government to court to have autism recognized as a medical condition that deserved full health care funding.
At the time, there was virtually no government funding of autism treatment. Families all over B.C. and Canada were having to bear the catastrophic expense of paying for their children's therapies.
The therapy that FEAT championed -- Lovaas ABA, an intensive early intervention program that requires 40 hours a week of one-on-one therapy, and which FEAT insists is the only effective autism therapy backed by scientific study -- cost upwards of $60,000 a year.
So in 1998, Freeman and Lewis organized a group of 30 families who took the then NDP government to B.C. Supreme Court to force the government to fund Lovaas therapy in its entirety.
There was a change of government: The Liberal government of the day appealed, and the case went to the B.C. Court of Appeal in 2002.
FEAT won again.
In 2003, FEAT won a third time against the government in B.C. Supreme Court in a case similar to the first.
The Liberal government, however, which had still not followed the lower courts' orders, took the case to the Supreme Court of Canada.
In November 2004, in what was considered one of the most significant social-policy cases to reach the Supreme Court, the court devastated parents of children with autism across the country when it ruled for the province, and refused to elevate health care funding to a constitutional right.
This pleased the 10 provincial governments and the federal government, all of which intervened to warn judges that governments would have to fund unlimited budgets if health care were to become all things to all people.
Thus, the court ruling meant that parents of children who were autistic were still on their own, and the province could choose to fund or not fund autism therapy at whatever level it wished.
Still, FEAT had won a victory of sorts -- the moral one.
Its six-year-long battle with the provincial government essentially embarrassed Victoria into creating a province-wide network of diagnosis and services.
It also ponied up money for therapies -- $20,000 a year for children under six, and $6,000 a year for children between six and 19.
And -- a critical point, this -- it made those monies discretionary: it was left up to each family to choose whichever therapy they felt was best for their child.
This angered Lewis on two counts.
One, the money was nowhere near enough to fund Lovaas, or, for that matter, most other therapies.
Two, the discretionary nature of the funding, and the provincial government's refusal to endorse Lovaas as best practice, placed all other therapies on the same footing with Lovaas.
To Lewis and Freeman, it was unthinkable. Asked if she thought families who did not adopt Lovaas should be denied funding, Lewis said:
"I think so. If they are not doing best practices, ya.
"You now, if you have cancer . . . and the doctor gives you a treatment protocol to follow, you may not like it . . . and you can choose not to do it, and you can choose to take shark's fin cartilage or papaya seeds or any number of things. But the government's not going to pay for shark's fin. They're going to pay for what's best, what they know, what science says."
And Lovaas, FEAT maintains, is the therapy that has the most studies and controlled data proving its efficacy.
"There's about 32 therapies for autism," Freeman said, "95 per cent of which have no data behind them."
In describing other therapies, Freeman used the term "quackery" more than once.
"There's lots of people who do all kinds of stuff, and government actually here pays for all kinds of garbage because they're not accountable. Government doesn't care if something works. They just give money to people to go away."
Of course, many families of children with autism don't feel the same as Lewis and Freeman, and have adopted other therapies for their children.
To no one's benefit, except perhaps the government's, the result has been a rancorous split in the autism community among service providers, therapists and academics, and the families of children with autism themselves.
More on this and therapies tomorrow.
email@example.com or 604-605-2905
- - -
See www.VancouverSun.com for more from the six-part series
SATURDAY: The story of a severe case, and life at home with an autistic child.
MONDAY: Two mothers, their tears, and the sacrifices they must make living with autism.
TUESDAY: How the health care system discriminates against those on low income.
WEDNESDAY: Immigrants and the special challenges they face in dealing with autism.
TODAY: The high cost of therapy, and a mother's determination.
FRIDAY: Two autistic teens and their families face an uncertain future.
Colour Photo: Glenn Baglo, Vancouver Sun / Jean Lewis, of
Families For Early Autism Treatment, says government money is
nowhere near enough to fund therapy.
Canada is making things worse in Afghanistan
Kitchener Waterloo Record
Apr 26, 2007.
When I read The Record and watch the news about the loss of life, limbs and minds in Afghanistan, it alarms me to no end.
We in Canada mourn for the loss of our young men and women; some Canadians also mourn the loss of the Afghan women, children and men who are innocent victims.
It seems hard to believe that we are making lives better for anybody with such aggression; we are making a bad situation worse and creating more enemies.
Now Canadian Defence Minister Gordon O'Connor is spending $650 million to buy more tanks (Canada, U.S. Press NATO For Troops; O'Connor Announces Purchase, Lease Of Tanks -- April 13). A few years ago we were told tanks were obsolete and not needed -- so much for development and reconstruction.
How come we can find so much taxpayer money to kill and destroy in a faraway country but cannot find the money to treat children with autism in this country? (Autism Ruling 'Disheartening'; Supreme Court Refuses To Listen To Appeal For Coverage Of Treatment -- April 13.) There is something wrong with that picture.
Maybe we should follow Joseph Lederman's suggestion in his April 11 letter to the editor, Make Politicians And Military Brass Fight Wars.
Apr 26, 2007
FREDERICTON -- Liberal M-P Andy Scott says he's disappointed and frustrated the Conservative government hasn't put money aside to fund a national autism strategy.
Scott was in his Fredericton riding yesterday to visit students at Leo Hayes High School.
The students helped craft a private member's bill calling for a national autism plan.
The motion did not contain a timeline.
But Scott says the Tories have acknowledged that something needed to be done by the end of the 2006-2007 fiscal year.
Lawyer argues province can't afford higher ceiling on disability support; Counsel for claimants at Human Rights Commission hearing says argument simply doesn't wash
Apr 26, 2007.
Section: The Province
Byline: Dave Stewart
A lawyer representing the P.E.I. government said
Wednesday the province simply can't afford to lift the ceiling on
help for disabled people's needs.
Robert MacNevin said it's reasonable to assume if government lifted the $3,000 per-month cap on the Disability Support Program it would cost too much money.
"It would be reasonable to assume more would seek services (and) users would seek a broader scope of support," MacNevin said.
Four claimants have filed discrimination complaints under the Disability Support Program and complained to the P.E.I. Human Rights Commission.
The case wrapped up in Charlottetown Wednesday, with all three parties - government and lawyers for the claimants and the Human Rights Commission - giving final oral submissions.
MacNevin said there are currently 1,100 Islanders using the Disability Support Program but a number aren't accessing the services.
Karen Campbell, counsel for the claimants, said MacNevin's argument doesn't wash.
She said government managed to come up with $35 million - four times the budget for the Disability Support Program - to settle the Polar Foods situation and was able to keep functioning.
Campbell said it isn't about what government can afford, it's about what the province doesn't want to spend on people with disabilities. The complaints were filed by parents of children with disabilities who feel they are being discriminated against - Vic Douse, Carolyn Bateman, Brad and Dale Wonnacott and Margaret Murphy.
All but Murphy are parents of autistic children.
MacNevin said if the cap were lifted for all 1,100 users, the cost to government would rise from $8 million per year to $66 million.
It was a point challenged by Campbell and Lou Ann Thomson, chairing the three-member panel hearing the case.
Thomson charged MacNevin's argument was mere speculation.
Campbell pointed out that the province announced in its recent budget that it was going to spend a further $900,000 on the Disability Support Program, further proof the program isn't breaking government financially.
The parents have also been arguing that the screening tools and the income testing system set up for claims practically make it impossible to reach even the DSP ceiling of $3,000 per month in financial support.
The four families are also challenging the FIM questionnaire used to determine the type and amount of help provided to a disabled person. FIM, which originally stood for functional independence measure, is a trademarked assessment tool adopted by the provincial Department of Social Services when it began the DSP in 2001.
The test was developed as a tool for rehabilitation nursing.
Parents questioned whether the questionnaire was too focused on issues like physical mobility to be of use in determining support for people whose disabilities are cognitive.
Thomson said the panel will render a written decision within 60 days.
End of May 9-12th mailing
Tuesday, May 8, 2007
Week of May 7th Mailing
An article about our Dear NANCY----- WAY TO GO!!!!
PRESS RELEASE FOR IMMEDIATE RELEASE:
NDP selects Nancy Morrison to fight for York-Simcoes working families
Bradford, May 5 / - At a well attended gathering in the Bradford Community Centre on Thursday evening, York-Simcoe New Democrats unanimously selected Nancy Morrison to be their candidate in the upcoming provincial election in October.
NDP Leader Howard Hampton welcomed Morrison as the NDP candidate.
"The upcoming provincial election is about fairness and trust. Its about deciding who you can count on to stand up for today's hard-working families. Nancy Morrison is a strong effective advocate. She will stand up to Dalton McGuinty and his broken promises and deliver real results for people in York-Simcoe and in the province,"
Shelley Martel, NDP MPP (Nickel Belt) and party critic for autism, who was also in attendance at the meeting, shared her deep respect for Morrison's conviction and passion. "
During the meeting, a moment was taken to remember NDP member Carol McPherson who passed away in March. Paul Wessenger, former NDP MPP for Barrie/Simcoe/Bradford shared some of his thoughts and memories of Carol. Prior to being the Innisfil Enterprise owner and editor, Carol worked in Paul's administrative office when he was Parliamentary Assistant to Howard Hampton. "Carol was deeply committed to social justice, and to the promotion of equality for all individuals. Carol was a friend of this party, a friend of mine, and is deeply missed." said Wessenger.
In her acceptance speech, Nancy Morrison addressed several crucial issues facing voters of York-Simcoe. Morrison noted, The Georgina smelter is unfortunately another broken Liberal promise that so desperately needs attention. My shock was to learn that our incumbent MPP lives within a few kms of that site. Yet, she has done little to hold the Liberals accountable for their promise to clean it up.
On the minimum wage and MMP raises, Morrison said The Liberal government held a special extension just before Christmas to ram through a raise to give MPP's a minimum of $110,000 a year, and Premier McGuinty has gone to over $196,000 a year, which the Conservatives fully supported. The NDP voted against this. Meanwhile, the government doesn't think the lowest income earners in this province are worth $10 an hour. Shame on them.
Liberal broken promises, and Conservative inaction. That is what this election is all about. Choosing the party and the representative that will take your concerns and ENSURE ACTION. Someone who won't sit complacent in their position. Someone who will continue to demonstrate their hard working advocacy, their integrity and honesty for the issues that are important to you. continued Morrison.
Nancy Morrison, her husband and two children live in
The provincial election will be held October 10, 2007.
Contact: Bob Ridley at: 905-476-6917 or firstname.lastname@example.org
This article is American however it is one of the HOTTEST
topics in my Google Alerts..
Social Behavior Differs In Children With Family History Of Autism
Science Daily — The baby brothers and sisters of autistic children do not seek emotional cues from adults, or respond to them, as often as other toddlers do, suggests new research from the University of California, San Diego.
Baby wearing an ERP cap at UC
The study is the first to investigate "social referencing" behavior in children from families at high risk for autism and also points to profound differences in related measurements of brain activity, said lead researcher Leslie Carver.
"Our results," Carver said, "support two important ideas about autism: That those behaviors that are diagnostic of the disorder fall on one end of a broad behavioral spectrum and also that there is a strong genetic component to autism, evidenced by the behavioral resemblances in close family members."
The heritability of autism has been estimated as high as 90 percent, Carver noted, and siblings are at increased risk of receiving the diagnosis themselves: About 8 percent will go on to develop the disorder, as compared to about .5 percent of the general population.
Social referencing involves checking in with the emotional displays of others (especially those we expect to be knowledgeable about a novel situation) and regulating our own emotions and behavior in response. It is something most of us do and do without thinking. On spying a new caterpillar in the park, a young child might turn to find a parent's smile before toddling over to take a closer look. And an adult, startled by a sudden jolt on an airborne plane, might seek out the expression of a flight attendant to determine whether that was just a nasty bit of turbulence or something really worth worrying about.
Typically, social referencing begins to emerge toward the end of the first year of life. But in individuals with autism, this behavior, along with several other aspects of social cognition, is characteristically impaired.
The current research is in line with earlier work demonstrating that first-degree relatives of autistic children often display milder, or subclinical, features of the disorder. Carver and her colleagues, UC San Diego psychology professor Karen Dobkins, doctoral student Lauren Cornew and post-doctoral researcher Joseph McCleery, tested 18 high-risk toddlers (18-month-old siblings of children diagnosed with autism) and compared their results to those of 28 age-matched counterparts who had no family history of the disorder.
In the behavioral portion of the experiments, the children were presented with three novel and ambiguous toys -- toys that could be taken as either good or bad, scary or fun, or neither -- and their caregivers were trained to react with facial expressions and vocal signals that were positive, negative and neutral. The interactions were videotaped and later analyzed.
After the behavioral testing, the children were shown pictures of the same toys and their brain responses were measured -- specifically by tracking ERP (event-related potential) activity, or the electrical activity of groups of neurons firing in synchrony in response to a specific event.
The high-risk toddlers differed in almost every element of social referencing, the researchers found: Though they sought emotional information from adults as quickly as the low-risk toddlers, they did so about 30 percent less frequently, and they did not respond to the adult's information in ways that were consistent with the adult's reaction.
Brain-activity measurements told a similar story: Where low-risk children showed the expected magnitude of neural response to emotionally tagged objects, the high-risk ones did not. And where the brain activity of low-risk children correlated with their behavior regulation, this pattern was not observed in the high-risk.
"It's as if the high-risk children do not have as clear an understanding of the meaning of an emotion and don't connect it to the object in the same way," Carver said.
Data from children who would later go on to a diagnosis of autism are not included in the study results.
Carver, an assistant professor of psychology and director of the Developmental Cognitive and Social Neuroscience Lab at UC San Diego, is presenting the findings at the 2007 International Meeting for Autism Research in
The study is supported by funding from the National Association for Autism Research, Autism Speaks and the MIND Institute at UC Davis.
Note: This story has been adapted from a news release issued by
Message from Lianne and Family:
Votes start Monday May 7 till May 22nd. Please take time to go to www.sunlightlaundry.ca and vote for us daily PLEASE. And pass the word around if possible. It is free and only takes a second.... I will keep you all posted...
Thanks so much
Lianne and Family
Hormone treatment shows promise against autism, conference hears; Daily parent-child play sessions also help, separate study finds
The Edmonton Journal
May 5, 2007
By: Warren King
SEATTLE - The hormone oxytocin has shown promise in relieving some symptoms of autism, scientists reported Thursday at an international conference in Seattle.
Oxytocin, which stimulates uterine contractions and milk secretion in women, has helped some autistic adults reduce repetitive behaviour, such as rocking, and improved their ability to identify emotions, such as anger and happiness, and relate to people better.
"There are still a lot of questions, such as how to administer it daily," said Evodokia Anagnostou, of
In the oxytocin study, which was relatively small with 23 subjects, the scientists found that both injections and nasal sprays of the hormone relieved symptoms for several weeks much better than in patients who received placebos.
Using magnetic resonance imaging, Anagnostou and her colleagues also found that oxytocin improved regions of the brain that are affected by autism. Autism is a permanent brain disorder, usually diagnosed after age three, that can seriously impair social and communication skills and limit people's interests and activities. It manifests itself in a spectrum of ways, from mild to severe, and experts now estimate one in 150 people in the
Most scientists don't believe there is a single cause of autism. But they have identified abnormalities in several brain regions, and some genetic defects are believed related to the disorder. Conventional drug treatment usually targets problems such as hyperactivity and aggressive behaviour in some patients.
Recently, much research has focused on early diagnosis and treatment to help socialization and language skills. Scientists don't believe symptoms can be detected before six months of age.
But a decade ago, Geraldine Dawson, director of the University of Washington Autism Center, conducted pioneering research showing that autistic children as young as one year exhibit little eye contact with others, and subsequent research has found other early clues.
Dawson and Sally Rogers of the
Before the sessions, the children played silently and alone in a room with parents. Afterward, they laughed, looked parents straight in the eye and used words to identify toys and express wishes.
"Intervention during the onset period may slow or minimize the progression,"
In other research, Eric Fombonne, of Montreal Children's Hospital, said in a news conference that samples of blood, hair and toenails taken from 71 newly diagnosed children and their mothers showed levels of mercury no different from children who didn't have autism.
Fombonne conceded the samples gave only a snapshot in time, but he said the findings support studies cited by the U.S. Centers for Disease Control and Prevention saying there is no link between mercury in vaccine preservatives and autism. Many parents and some scientists believe there is a link.
More than 900 researchers, parents and activists are gathering through today for the sixth International Meeting for Autism Research.
'Living with a loved one who has autism is an emotional roller coaster from pure happiness to sheer agony'
The Vancouver Sun
May 7, 2007
Re: "I'm not doing the talk about the birds and bees," April 27
I was initially happy to see The Sun devote space for a comprehensive series about autism -- it is a widespread and growing reality for many families and deserves better understanding. Unfortunately, I don't know that The Sun did people with autism any favours. To see a photo of a teenage boy, fully identifiable not only by image but by first and last name, and read about his mother seeing him with an erection, was shocking and disappointing. Is there any parent of a 14-year-old boy who thinks his or her child would appreciate this sort of publicity?
One of the biggest reasons for publishing a series about autism should be to demystify the condition. That means explaining what similarities people with autism share with people without it, what unique issues they and their families face and education as to how best relate to a person with autism. First and foremost, drill home the understanding that people with any kind of disability hold the same rights to dignity and quality of life as those without a disability.
This boy's first identity is not autism. It is boy. He is a boy with interests, friends, family, struggles, joys and autism. And for every member of his peer group, he is now the boy whose erection was openly and jocularly discussed in The Sun. If there was a better way to send him and anyone else with autism the message that he is different and somehow less deserving of the rights to confidentiality and respect that the rest of us share, I doubt I could have come up with it myself.
'Living with a loved one who has autism is an emotional roller coaster from pure happiness to sheer agony'
The Vancouver Sun
May 7, 2007.
Byline: Sabrina Freeman
Re: Autistic kids' families need help, Pete McMartin; and Ethically and economically, it makes sense to give more help for autism, Editorial, both April 28
The Faces of Autism series, together with the concluding column by Pete McMartin and the editorial, collectively constitute a major public service. Thank you. The Sun's concentrated attention on the epidemic of autism that is currently sweeping
There is, however, one point of clarification that we believe must be made. Contrary to the clear inference in the April 26 article on treatment options, FEAT-BC has and continues to advocate for the inclusion in medicare coverage of any and all science-based autism treatments, not only the Lovaas method. At such time as scientific evidence supports a physician-prescribed alternative mode of treatment, then it too should be included by medicare. To date, however, our courts have found that it is only intensive behavioural treatment based on the Lovaas protocol that has generated the requisite scientific data.
Families for Early Autism Treatment of B.C.
'Living with a loved one who has autism is an emotional roller coaster from pure happiness to sheer agony'
The Vancouver Sun
May 7, 2007
Byline: Debra Antifaev
Re: Many options, little research makes choice difficult, Faces of Autism, April 27
Cyndi Gerlach says she tried Lovaas ABA for the eldest of her two sons with autism, but "stopped after a couple of days. She felt it was too gruelling a protocol."
While I would never deny anyone his or her choice of medical treatments, if we had all employed this ideology, I never would have learned to ski, my husband would not be training for a half-marathon, and my other children would not ride horses, play hockey or read. In addition, my severely autistic son never would have been potty trained, learned to ride, swim or communicate with his family.
It is gruelling, expensive, heartbreaking and hard on the rest of the family (my husband and I have five children), but for some of us quitting is not an option. How can someone publicly criticize something she has tried "for a couple of days"? If Gerlach doesn't want to use
There is not always a logical explanation as to why some medical interventions work for some people and not others, but it does not mean we stop trying. It means we use what the studies say are effective today and we keep searching for a cure.
'Living with a loved one who has autism is an emotional roller coaster from pure happiness to sheer agony'
The Vancouver Sun
May 7, 2007
Byline: Frances Kelly
The Faces of Autism series indicates that people who have an IQ over 70 at age 19 will be denied services. Families need to know that this should not be the case.
The "IQ over 70" rule was successfully challenged before the courts in March 2006 by Neil Fahlman and his mother, Fiona Gow. Neil, who has autism and other disabilities, faced being cut off all services at age 19 because his IQ was 79. The B.C. Supreme Court ruled that this was not permitted under the Community Living Authority Act (see Gow and Fahlman v. CLBC). The government tried to appeal the decision in December 2006. It lost again; in written reasons released in January 2007, the B.C. Court of Appeal upheld the lower decision (see CLBC v. Gow and Fahlman).
Parents should not be advised that this is the rule when the courts have said it is not.
Barrister and solicitor
Community Legal Assistance Society
'Living with a loved one who has autism is an emotional roller coaster from pure happiness to sheer agony'
The Vancouver Sun
May 7, 2007
Byline: June Yee
Re: Faces of Autism, April 21-27
Thank you for making readers aware of autism, the families affected by it and its challenges in Pete McMartin's recent six-part series. I have an autistic son who is 18 now. Through continued advocacy, our commitment as parents, patience and support, he is taking control of his life and doing exceptionally well. He is happy. As a family, we try not to get caught up worrying about his disability, but instead focus on his abilities and what we can do to support them. I used to worry that he didn't have friends or was always alone. But now I realize that he is content and is OK doing things by himself. In fact, it causes him great anxiety if anyone interferes with his alone time and space.
Living with a loved one who has autism is an emotional roller coaster from pure happiness to sheer agony where one wonders if he or she can take any more. But we do because these are our children. We must accept them for how special they are and realize there is no cure.
Time spent blaming the system for lack of funds and support is energy- draining; instead, out of necessity, our energy is diverted to learning from the experts and finding ways to help our son.
I am disappointed and angry that our government is looking at, but not seeing the importance of helping the most vulnerable of families. These children are no different than other children when it comes to dreams and aspirations. They grow up hoping to have careers, raise families and contribute to society.
We need hope, hope that our children can live independently and well. But don't hope that things will ever be normal. Instead, accept that it is normal to hope for the best.
Photo: June Yee
'Living with a loved one who has autism is an emotional roller coaster from pure happiness to sheer agony'
The Vancouver Sun
May 7, 2007.
Byline: Ellen Domm
Pete McMartin neglected to mention in his series on autism that even if families have financial resources to cover expenses, there is a paucity of qualified professionals available to implement treatment programs. There are only a handful of Board Certified Behaviour Analysts in B.C., and they have lengthy waiting lists.
Behaviour interventionists are likely to be young, inexperienced college students, and the turnover rate for these jobs is so quick that families are often left with programs in place, but no one to run them. What the province and autism community desperately need are educated and committed professionals who can work effectively with this clientele.
My colleagues at
Department of Psychology, Capilano College
Photo: Ellen Domm
Autism series: No one talked to the kids
May 7, 2007
Byline: Alex Lu
Pete McMartin's series on autism might be touching to the parents of autistic kids.
However, has anyone bothered to interview the kids? Or does the writer just assume that we're all idiots, unable to express our discontent in an intelligible way?
Being a high-functioning autistic kid myself, I have to say that I take offence, and am furious at the way we're portrayed.
First of all, autism is not a mental disability and we do not need to be "fixed." I admit that you do have a tiny section on the bottom of the page for one part of the series proclaiming otherwise, but your wording completely contradicts that fact.
"Therapy," "treatment"-- are they not words that usually inspire pictures of raving lunatics in institutions?
All that's different from supposedly "normal" people and me is the way I think. Although my parents, teachers and peers may pity me for being anti-social, I pity them for being noisy idlers who do nothing but banter with each other all day long. Although people may think that my opinions are flawed, I believe that their opinions are flawed. I have no desire to socialize, and I'm perfectly fine with going through life alone.
However, I also have no desire to be stigmatized, bullied, mocked or discriminated against for the way my brain works. Some people tell me to change my opinions and socialize to change the way people act towards me. That is akin to one telling a black man to "peel off" his skin and become white, so that people don't discriminate against him. Does this so-called "era of acceptance" apply to us?
Ever since the doctor gave me that death sentence (autism), the only thing my parents talk about is me. Before, they used to talk about each other, their jobs and many other things.
I don't understand what has changed between then and now. I don't act, talk or look any differently. The only difference is that I am now officially autistic. It has not given them relief, it has only sent them into a frenzy.
And don't get me started about school; before, I used to be a "normal" kid, albeit uninterested in socializing. Now, I am autistic. I require a teacher assistant.
Taking on this label has ruined my life. I protest by refusing therapy, because I don't want to become "neuro-typical." I would never give up my ability to think the way I do.
So, what's the solution to this dilemma?
I propose that instead of "treating" autistic kids so that they become "normal," we accept them.
Alex Lu lives in
New York Times
May 7, 2007.
Section: Metropolitan Desk; SECTB
A bill designed to give parents greater access to information about their children who are in residential health facilities was signed into law yesterday by Gov. Eliot Spitzer. The law, spurred by the death of a 13-year-old autistic boy this year, requires the facilities to notify parents and guardians within 24 hours of events affecting the children's health and safety. The boy, Jonathan Carey, died in February while under care at the state's
The Autism Society of New Brunswick today issued the press release
Calls on the Federal Government to New Brunswick
Reply to the Senate with Swift Action on a National Autism Strategy
- May 7, 2007 – Fredericton
The Autism Society New Brunswick (ASNB) is
calling on the federal government to respond to the Senate
recommendations regarding the autism crisis in
with swift action towards the implementation of a National Autism Strategy (NAS). Canada
Last week a motion by Senator Art Eggleton, the Chair of the Standing
Senate Committee on Social Affairs, was introduced in the Senate requesting
The federal government provide a "complete and detailed response" to the
recommendations in its report titled "Pay Now or Pay Later: Autism
Families in Crisis" which was tabled in the Senate on March 29, 2007. The
Ministers of Health, Finance, National Revenue, and Intergovernmental Affairs are designated as responsible for providing the government response.
The Senate Committee's report recognized an autism crisis in
recommended that the government work with the provinces to develop a
NAS and negotiate a funding formula whereby federal budget surplus dollars
Would be transferred to the provinces to fund autism treatment pursuant to
ASNB fully supports a NAS and strongly urges the federal Cabinet to
Make the development and implementation a top priority. ASNB realizes much is
required to address the immediate needs of autistic individuals of all
Funding of Applied Behavioural Analysis (ABA), to date the only proven
effective evidence based intervention for autism, is critical.
Properly trained personnel must provide
and related services. Teachers and Teachers Aides must also be properly trained in ABA and autism to ABA
Enable autistic students to prosper, receiving a real education. Autistic
youths and adults are in desperate need of decent residential care options
with caregivers knowledgeable of autism and trained in caring for autistic
" . . . if you pay for it now, look at the return you get on your
investment. The people with autism will get out into the real world and
get jobs, and that will stimulate the economy. Or you can pay later, which
means they will go into group homes and it will cost the taxpayers a lot of
money in the long run to keep them there." said Jason Oldford, member ASNB,
testifying as an autistic individual at the Senate inquiry.
"The facts speak for themselves. Recently the
Centres for Disease U.S.
Control (CDC) reported that the prevalence rate has reached 1 in every
150 children being diagnosed with an Autism Spectrum Disorder (ASD). To
Many people this is not just a crisis, but an epidemic. Yet, not one
province offers autism treatment under Medicare. Similarly, many children with
autism are not being properly taught in the public education system. The
autism initiatives that Health Minister Clement announced on November 21,
including the creation of a website and the holding of a future
symposium, demonstrate a lack of willingness to take urgently-needed action. This is in sharp contrast to the
where President Bush recently signed the U.S.
'Combating Autism Act'. The situation requires the government to
abandon its ostrich approach to crisis management and take swift action to
address this national problem before it gets worse" said Sam Yassine, advocacy
For more information, contact:
Brian Rimpilainen, ASNB federal rep - email@example.com
"Our mission is to promote public awareness, understanding and
acceptance of persons diagnosed with autism/autism spectrum disorder (ASD) while providing support to families for the realization of services and programs within their community"
ASNB works for improvements in our province that affect the lives of
individuals with autism. We cooperate with other agencies with
complementary mandates, and help ensure that individuals with autism and their
families have a voice in the issues that affect them. ASNB is an active member
's Autism Steering Committee working to Universityof New Brunswick
establish a Centre for Education, Training, and Research in Autism and related
neurological disorders. ASNB also supplies support for the Stan Cassidy
Centre's Paediatric Rehabilitation Team, which is
's New Brunswick
traveling tertiary care resource.
ASNB surveys available resources while assessing the needs of the
autistic community, and then works at developing a plan to address those needs.
One area identified is to provide training in Intensive Behavioural
Interventions for therapists, teachers, and teacher assistants. Another
issue is the accessibility of post-secondary education, employment
opportunities for adults with autism, and residential facilities for
those requiring it.
ASNB works on a local level with families/caregivers providing support
and resources based on the need, and where necessary we advocate on an
individual level attending case conferences, school meetings ensuring
appropriate support systems are in place.
I Am The Happy Mother Of An Autistic Child
I do worry about negative representations of autism in the media and the “prevention” and “disease” mindset.
By Citizen Correspondent Estee Klar-Wolfund
Before Adam was born, I knew he was going to be a boy. I had one of those lucid dreams in my first trimester where I actually “saw” Adam. My dreams were typical ones: picturing early mornings at hockey practice, cars, trucks, superheroes, and later a girlfriend hidden away behind a closed bedroom door. My only fear was in not having a child – in never having the joys and the headaches at all. So maybe that’s what made me a happy mother of an autistic child.
The pride and joy I feel for Adam motivated me to form The Autism Acceptance Project and begin a blog titled The Joy Of Autism. Adam, who is now five years old, was diagnosed at eighteen months of age. The word “joy” in our lives isn’t just a mantra, it’s for real. Despite challenges and hurdles, Adam’s affection and affable nature motivates everyone in our family to focus on what quality of life means: in the short time we have on this earth, we try to focus on what is meaningful in our lives. While Adam may never be a “jock,” autism doesn’t mean that he’ll never play hockey.
In the beginning, it wasn’t like this. When Adam was diagnosed at eighteen months of age, my husband and I were terrified of autism. It is a universal theme – most of us are unequipped to deal with autism, let alone any disability. Unless borne to a family with disability in it, or if you went to school with disabled children, there is no way to know how to deal with the sudden diagnosis which many refer to as D-Day. Yet, despite the diagnosis, Adam had not changed. The diagnosis simply changed our perception of him and his future.
All I could picture was a son detached from me, rocking in a corner back and forth for the rest of his life. Isn’t that what most of the world thinks of autism? A child who is among us, but “not quite with us?” Add to that a very negative portrayal of autism for the sake of creating urgency and generating money and careers parents are offered very little hope and support to move on in life with autism.
For the full picture story click here
Autistic Toddlers Easily Study Photos of Faces
Published: Thursday, May 3, 2007 | 9:27 PM ET
THURSDAY, May 3 (HealthDay News) - Even though it's often difficult for toddlers with autism spectrum disorders to make eye contact or to focus on people's faces, they have little trouble looking at photographs of faces, U.S. researchers report.
A team from the Yale University School of Medicine also found that toddlers with an autism spectrum disorder (ASD) spent most of the time examining the eyes of people in photographs.
"This is a surprising finding, given that avoiding eye contact is one of the classic hallmarks of autism," Katarzyna Chawarska, an assistant professor at the Yale Child Study Center, said in a prepared statement.
"The results are preliminary and will require further replication and extension, but they suggest that pictures of faces and eyes are, by themselves, neither inherently unattractive nor inherently adverse to toddlers with ASD," she said.
"Therefore, the limited attention to faces and eyes observed in natural settings may be due to the fact that faces don't stand out to them as much as other objects in the environment," Chawarska said. "There also may be heightened arousal related to the complex social and perceptual context in which faces usually occur."
The researchers used an eye-tracking system to collect information on the toddlers' visual scanning patterns and their recognition of faces and abstract patterns.
For the full article : Click here:
Hmmmmmmmm more mercury and autism news..
(I don’t know what to believe anymore.. it’s a
03/05/07 22h02 GMT+1
AFP News brief
No link between mercury and autism: study
- Send by e-mail
Mercury levels have no relationship to the development of autism, a developmental disorder whose cause remains unclear, according to a Canadian study published Thursday.
"In recent years, hypotheses have been raised concerning a possible relationship between mercury exposure and autism," said Eric Fombonne, head researcher and director of pediatric psychiatry at the Montreal Children's Hospital.
"Specifically, the concerns have been related to childhood thimerosal-containing vaccines, dental amalgams, and methylmercury in food," he said in a statement.
The research team examined mercury levels in hair and blood samples provided by autistic children and their mothers and concluded that the levels observed did not differ largely from those taken from children without autism.
The study also "demonstrated that there was no correlation between the mercury level and the severity of symptoms and level of functioning of autistic children."
Children with autism, a growing developmental concern which appears before age three, often avoid physical contact and communicate with gestures rather than speech.
A February study by the US Centers for Disease Control and Prevention suggested that autism is more common in the
The Canadian study was performed on 71 autistic children and 75 children without the disorder.
Fombonne said the study's findings also implied that "chelation therapies, whereby heavy metals are removed from the body using specific compounds, are not useful in the treatment of autism."
For full article:
Photo: Paul Chivers
School bus leaves behind autistic boy; Mother wants better training for drivers
Local News - Friday, May 04, 2007 Updated @ 10:14:49 AM
A routine trip to school turned into an ordeal for an autistic boy who was left behind by his bus driver on a rural road after acting out.
"It was the scariest moment of my life as a mom," said Micheline Demers-Landry.
"You don't leave a child at the side of a country road, on any road."
It happened Wednesday at about 7:35 a.m. when her son, Drew, 11, and daughter, Molly, 9, were picked up at their bus stop near their rural residence on their way to
Drew has Asperger Syndrome, a form of autism, although he's high functioning and it's not obvious by looking at him that he has any problems, she said.
The siblings were fighting about toys when the driver told them to stop arguing or get off the bus, she said.
Drew can't handle confusion and he walked off, she said, adding the driver pulled away, leaving the boy two kilometres from his home.
Demers-Landry said she had not yet left for work when the bus company, Stock Transportation, called a short time later to find out if her son had returned home, prompting her to drive along the road until she found him.
The driver is no longer on that route and has been disciplined, she said.
And while she's also happy with the quick response from the school board, Demers-Landry said bus drivers should be trained to deal with special-needs children on their route.
Stock Transportation wouldn't comment on the incident when contacted Thursday.
"This certainly is a very rare occurrence," said Anna Marie Bitonti, director of education for the Nipissing-Parry Sound Catholic School Board.
A transportation consortium administers bus service to the four boards in the district.
This is not an incident that anyone could have expected, Bitonti said.
Wednesday's incident was handled immediately, she added, noting bus drivers are subject to background checks and receive training in first-aid and driving skills.
The eleventh Annual Meeting of the Children’s Treatment Centre will be held on Thursday May 10th, 2007. Premier Dalton McGuinty will be the Guest Speaker, and his address will be on the spirit of volunteerism. “This topic is most appropriate,” said Pierre Guindon, President of the Centre. “The Centre was started by volunteers and it is maintained by volunteers through organizing fundraising events and offering support services to clinical staff such as reception duties, driving children to their appointments, etc. It is the volunteers, as well as the generosity of our donors, that make the service the Centre offers to abused children and their families possible in our community.”
The Annual Meeting is an opportunity for the Centre’s Board of Directors to pay tribute to the many volunteers and donors who continue to maintain this service in our community. “We feel that the attendance of the Premier as the Guest Speaker at this event to thank our donors and volunteers for their contribution would be the greatest honour and tribute we can give them,” said Mr. Guindon.
The Annual Meeting will be held at the Best Western Parkway Inn,
ACCESS TO JUSTICE (you might have this already!!!)
TheStar.com - News - Should legal bills be tax deductible?
Should legal bills be tax deductible?
As court costs soar, a tax break would help out the middle class and even the playing field for people suing businesses
Apr 24, 2007 04:30 AM
Legal Affairs Reporter
Stephanie Etherington spent nearly $35,000 in a legal battle with the Halton District School Board over her autistic son's education.
As Canadians wrestle with their receipts for next week's income tax deadline, some lawyers argue there should be one more category of paper eligible for filing – legal bills.
"The general philosophical thrust, in this day and age, when justice is so expensive, should be toward giving individuals a break by allowing them to deduct their legal fees," says tax lawyer Vern Krishna, a professor at the
As a rule, businesses can deduct legal fees from their income, while individuals cannot. But with the costs of even simple cases soaring – a three-day civil trial is estimated at $60,000 –
"It's not a pure tax issue. It's a socio-economic issue."
Those who stand to gain the most are the middle class, because they don't qualify for legal aid.
For a person in the 40 per cent tax bracket, every $100 spent on legal fees would drop to $60 after deductions. That would have been a big help to Etherington and her husband, Stephen, who spent three years fighting to accommodate their son, Aaron, now 18, at a
It could have been worse. In
The B.C. government, supported by other provinces, appealed the decision to the Supreme Court of Canada, which heard the case last month and reserved its decision.
In most cases, corporations already have a financial advantage when squaring off against individuals in court; being able to write off legal fees tilts the scales of justice even further.
When Barrie Millar sued General Motors in 2002 over his defective SUV, for instance, he could have been stuck with nearly $97,000 in legal expenses, with none of the tax advantages enjoyed by his opponent. Fortunately for Millar, he prevailed and GM was ordered to pay most of his costs.
Companies are allowed to deduct legal expenses as costs of doing business, in order to get an accurate measure of their net income. Though individuals usually can't deduct personal expenses, the government makes exceptions to accomplish certain social objectives, such as charitable giving.
"The main way to gain access to justice is to have a good lawyer. The problem is, justice is plain expensive. It's not a great way for ordinary people to resolve disputes."
The solution, says Nathanson, is to have a legal version of medicare. But he acknowledges that's unrealistic because a universal legal aid system would "bankrupt" the country.
John Williamson, federal director of the Canadian Taxpayers Federation, also opposes tax breaks for people. The organization wants to see fewer deductions, not more.
But Peter Callahan, Millar's lawyer, thinks giving individual Canadians the right to deduct legal fees is a good idea, worthy of further public debate.
"It's not crazy. It's the inequity that's striking."
The cost of litigation is "a very real deterrent" for most people, he said, and a tax break would make "more inclined to address the breach of their rights."
With files from Robert Benzie.
*** this e-List posts messages from time to time with regards to medical treatments and takes no responsibility for the readers choice of treatment.
I will post any conferences you choose to send to me, but relieve myself of any decisions, outcomes and choices you have decided to make in the treatment of yourself or your child.*************** Thank you and much luck!!!!
Subject: Biomedical Autism Mini Conference June 2, 2007,
Date: Fri, 4 May 2007 14:09:26 -0400
Here is the finalized flyer for the
We only have four weeks to go so I would sincerely appreciate any and all assistance that you could provide.
We are in the process of printing flyers and posters. Please let me know how many you would like. We will reimburse you for postage for any that you send out on our behalf. I need someone in the
I also will also have someone in-house working on marketing so anything you could suggest would be greatly appreciated.
Thanks so much.
The Great Plains Laboratory, Inc.
Treating Autism, PDD, AD(H)D and Behaviour Disorders
Biomedical Treatments That Make a Difference!
Saturday, June 2, 2007
9:00am – 5:00pm
(Directions: 401 to
Register by May 21 & receive $10 off your registration!!!
Space is limited to 100 attendees so please register today!
The Great Plains Laboratory, Inc. is pleased to provide an educational opportunity for parents, grandparents, caregivers, educators, therapists, physicians and other practitioners seeking practical information on biomedical interventions for the treatment of Autism, PDD, AD(H)D, psychiatric, behavioural and other “neuro-developmental” disorders.
This is an excellent opportunity for those seeking evidence to support the use of various biomedical treatment options. We will be discussing the role of nutritional deficiencies and supplements, special diet interventions, food allergies, heavy metal toxins, enzyme deficiencies, inborn errors of metabolism, immune deficiencies, the role of micro-organisms in the gastrointestinal tract and more.
Don’t miss this exciting opportunity to make a difference in someone’s life!
Register before May 21 and receive a $10 discount!!!
9:00am - 9:30 Registration & Introductions
9:30am - 10:30 Scott Clack – “Biomedical Treatments for Autism 101”
10:30am - 11:30 Christiane Gram – “A Mother's Success Story - My Son’s Journey with Autism”
11:30am - 12:00 Kelly Konstantopoulos – “AD(H)D Drug Treatments: Effectiveness, Side Effects, Risk Factors and Alternatives”
12:00pm – 1:00 Lunch
1:00pm – 2:00 Irene Swedak - “Nutritional Interventions for Autism and Related Disorders”
2:00pm - 2:30 Dr. Robert Dronyk – “Naturopathic Health Care for the Entire Family”
2:30pm - 3:30 Scott Clack – “Practical Applications - Where to start?”
3:30pm - 4:00 Christiane Gram – “Testing Options with
4:00pm - 4:30 Question & Answer (Panel)
*SUBJECT TO CHANGE WITHOUT NOTICE
About Our Founder
Dr. William Shaw is the Director and Founder of The Great Plains Laboratory for Health, Nutrition and Metabolism in
Scott Clack, B.Sc., N.D. received his Bachelor of Science (Honours) from the
His formal training in treating Autism Spectrum Disorders “ASD” patients includes Open Windows (
Dr. Robert Dronyk B.A.Sc., D.C., N.D. received his Bachelor of Applied Science (Honours) in Mechanical Engineering from the
Dr. Dronyk became interested in Autism, PDD and AD(H)D after seeing a sharp rise in the number of patients in his practice with these disorders. He attended Dr. Clack’s presentation on autism at a naturopathic convention in 2006 and completed the Great Plains Physician training conference in
Christiane Gram is a mother of a child who no longer has an Autism diagnosis. She will share her son’s journey of recovery. “Bobby,” a 4 ½ pound preemie immediately displayed “autistic symptoms” following his first vaccination. Christiane also fell into a deep post-partum depression following her son’s birth. She was taking 4 different antidepressant prescriptions when the side effects drove her to seek out alternative solutions. She cured herself using nutritional therapies and once well, started researching alternative interventions for her son.
Three years ago, she attended a seminar held by The Great Plains Laboratory in
Since then she has been working with
Kelly Konstantopoulos received her degree in Commerce, from
She has a special interest in “Orthomolecular Medicine” for the prevention and treatment of learning & behavior disorders in children (e.g. ADD & ADHD). Kelly has recently completed an independent research project on ADHD (Attention Deficit Hyperactivity Disorder) that covers the latest research on drug treatment effectiveness, side-effects, risks and government warnings for the ADHD class of drugs.
Irene Swedak graduated with honours from the
Irene also lectures frequently for both public and private organizations. She has a particular interest in working with families with special needs and has worked with over 24 children who have Autistic Spectrum Disorders.
POST CONFERENCE OUTREACH CLINIC
The Great Plains Laboratory is pleased to announce an Outreach Clinic specializing in the treatment of Autism Spectrum Disorders, allergies, AD(H)D, psychiatric and behavioral abnormalities in the
Dr. Robert Dronyk and Scott Clack, Naturopathic Doctors, specializing in the biological treatments (DAN! protocol) for autism and related disorders, will be seeing patients on Saturday June 16, by appointment only. The Great Plains Laboratory will provide a highly skilled phlebotomist, who will be on site as a convenience for any patients requiring blood draws.
Our Goal is to Assess and Treat: Underlying nutritional deficiencies and oxidative stress, yeast and bacterial imbalances, food allergies and sensitivities; immune and endocrine abnormalities, heavy metal toxicity, auto-immunity issues, impaired detoxification systems
What you can expect from The
A multi-faceted, whole-body approach integrating natural and holistic medicine
Review all signs & symptoms, no matter how ‘seemingly’ unrelated
Extensive intake form to obtain a detailed and accurate clinical picture
Extensive metabolic testing – utilizing blood, urine, stool, and hair
Case review from two branches of medicine (naturopathic and biochemistry)
Design and implement a comprehensive and individualized treatment plan based on each individual’s clinical and metabolic presentation
On-going support provided through office consultations at Dr. Dronyk’s full service clinic in the
To receive a complete flyer, make an appointment, or for specific pricing and details, please contact Sarah Wickens or Bryan Olson at The
CONFERENCE REGISTRATION FORM
1. Register by Mail: London 2007 Mini-Conference
c/o Sarah Wickens
2. Register by phone: (913) 341-8949 at The Great Plains Laboratory
3. Register by fax: (913) 341-6207 at The Great Plains Laboratory
CONFERENCE FEE: INCLUDES HANDOUTS & 1 COPY OF DR. SHAW’S BOOK
$49.00 CAD ($40 USD) EARLY BIRD DISCOUNT (must be received by May 21, 2007)
$59.00 CAD ($50 USD) REGULAR CONFERENCE FEE
X_______ Multiply appropriate fee by # of registrations
$_______Total *THE CONFERENCE FEE IS NON-REFUNDABLE*
PARTICIPANT CONTACT INFORMATION:
First Attendee Second Attendee:
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___Please check here if you prefer your name NOT be listed on a master list of all conference attendees. The list including name, address, email address and telephone numbers will be available so we may contact you for future workshops, outreach clinics and conferences. We respect your privacy and never sell or give out this information to any other parties.
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Overnight accommodations can be made at the Residence Inn by Marriott,