MAY 9th – May 12th Autism Article Mailing
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