September 12th – September 23rd 2008
Alliance for families with autism
Visit
www.autismnewsarticles.blogspot.com
to read archived mail
AMBER ALERT ** AMBER ALERT **
HEALTH IS A CONCERN FOR A MISSING AUTISTIC BOY AND HIS FATHER
THERE IS CONCERN FOR THE HEALTH OF BOTH A 13 YEAR OLD AUTISTIC BOY AND HIS FATHER FROM ANCASTER, WHO ARE STILL MISSING.
ON FRIDAY, ELIAS LARGE TOOK HIS SON AUSTIN ON A WEEKEND FISHING TRIP TO THE NORTH BAY AREA.
BUT POLICE WERE CALLED WHEN THEY DIDN'T RETURN AS PLANNED ON SUNDAY.
SGT. TERRI-LYNN COLLINGS SAYS THE LONGER HE IS AWAY, THE MORE LIKELY HE IS NOT BEING PROPERLY MEDICATED, WHICH COULD DRAMATICALLY CHANGE HIS BHEAVIOR.
IT WAS THE BOY'S BEHAVIOR THAT LED TO A TIP TO POLICE--THAT HE AND HIS FATHER HAD BEEN SPOTTED ON THE FERRY TO MANITOULIN ISLAND SATURDAY.
AT THE SAME TIME, POLICE ARE CONCERNED FOR THE SAFETY AND HEALTH OF THE BOY'S FATHER, BECAUSE OF HIS "UNUSUAL BEHAVIOR" BEFORE LEAVING FRIDAY.
AUSTIN LARGE IS DESCRIBED AS A WHITE MALE, 5-FEET-5 INCHES, 160 LBS. HEAVY BUILD, LIGHT BROWN HAIR IN A BRUSH CUT WITH BLUE EYES.
ELIAS LARGE IS A WHITE MALE, 5-FOOT-9, 150 LBS. WITH A SLIM BUILD, DARK BROWN HAIR WITH HAZEL EYES.
HE WAS LAST SEEN WEARING A DARK BROWN PULLOVER SHIRT AND DARK BLUE OR BLACK TRACK PANTS.
AND HE WAS DRIVING A 1999 SIERRA PICKUP WITH AN EXTENDED CAB AND THE LICENCE PLATE NUMBER N-E-7 9-1-7.
ANYONE WITH INFORMATION OF WHERE THE FATHER AND SON ARE SHOULD CALL HAMILTON POLICE OR CRIMESTOPPERS.
Police continue search for autistic boy, 13, who went missing with father
13 hours ago
HAMILTON — Hamilton police are still looking for a missing autistic teenager who was last seen Saturday on the ferry to Manitoulin Island.
The police service issued an Amber Alert on Monday night after 13-year-old Austin Large didn't return from a fishing trip with his father, Elias. Austin is described as a white male, 5 foot 5 inches, 160 pounds, with a heavy build, brush cut, light brown hair and blue eyes.
While the alert was lifted late Monday night, Sgt. Terri-Lynn Collings says the investigation is ongoing and police are concerned for the boy's health.
She says he is autistic and he may not be taking his medication, which could cause health complications.
The father and son are thought to be in a white 1999 GMC Sierra extended-cab truck with a large green tool box with Ontario licence plate number NE7 917.
Police say they grew suspicious when they learned that Austin and his father didn't go to Lake Nipissing as planned for a weekend fishing trip and say it was rare for the boy to go with his father.
Austin's parents are reportedly estranged.
Collings says Hamilton police are working with authorities in the Manitoulin Island area to locate Austin.
Anyone who has seen the two is asked to call 911.
http://toronto.ctv.ca/servlet/an/local/CTVNews/20080922/teen_missing_080923/20080923?hub=TorontoHome
Amber Alert yielded tip on missing autistic teen
Updated: Tue Sep. 23 2008 12:41:34 PM
ctvtoronto.ca
The Amber Alert has been lifted but police are still searching for a missing autistic Hamilton-area teen believed to be with his father.
Austin Large, 13, and his father Elias Large were to have left Friday for a fishing trip in the Lake Nipissing area, but Austin wasn't returned to his mother on Monday as scheduled.
Suspicions were further raised when it was learned the two didn't even go to Lake Nipissing and that it was rare for the boy to go with his father, who is estranged from Austin's mother. She has full custody of Austin.
The teen only has enough medication to last until today.
Police issued the Amber Alert on Monday, but cancelled it late that night.
Tips as to their whereabouts have been few.
"We had a credible call ... Saturday afternoon. He was seen and well and travelling towards Manitoulin Island," Det.-Sgt. Chris Kiriakopoulos of Hamilton Police told CTV Toronto.
However, no further leads have surfaced, he said.
The two are believed to be travelling in a 1999 GMC Sierra truck-extended, with a white, large green tool box with Ontario licence plate number NE7 917.
Austin is described as 5 foot five inches, 160 pounds. He has brush-cut light brown hair, blue eyes and a heavy build.
With a report from CTV Toronto's Jim Junkin
http://www.medicareforautismnow.org/
Hi Folks,
In this election time, please visit the above website and spread the word about the existence of the new "Medicare for Autism Now Society".
The website provides some ideas on how you can contribute to the cause of getting Medicare for Autism Now!
Andrew
ACTION ALERT
From: Laurie Mawlam [mailto:mawlam@ciaccess.com]
Subject: Action Alert - Federal Election Appeal
Dear friends,
As most of you know my family has been touched by autism. I now make a career out of helping others and work passionately to make change so others don't have to struggle like our family has.
We have a federal election scheduled for October 14. Please read the attached letter and consider helping. Please also forward this to as many people as you can.
Our Senate committee issued a report March 2007 entitles Pay Now or Pay Later - Autism Families In Crisis. This report was bang on and nothing has changed. We need our federal government to make change and the attached letter tells them how they can do that.
Please consider helping.
Laurie
Laurie Mawlam
Executive Director
Autism Canada
www.autismcanada.org
Changing Minds, Changing Lives.
Changing The Course Of Autism.
From: Autism Canada
To: All Stakeholders in the Autism Community
Date: September 16, 2008.
IMPORTANT ELECTION NOTICE TO ALL POLITICAL PARTIES!
The Need for an Autism Division in the Public Health Agency of Canada
Autism Canada is asking all Autism stakeholders to unite during this federal election campaign for the purpose of seeking firm commitments from all political candidates to add Autism to their priority list; we want them to specifically commit to create a Division for Autism Spectrum Disorders (ASD) within the Public Health Agency of Canada.
Autism now affects 1 in 150 children. This is epidemic considering that just thirty years ago this condition was considered rare. Worldwide, autism affects more children than paediatric cancer, diabetes and AIDS combined, however, resources targeted at autism are just a fraction of the resources dedicated to any one of these other conditions.
In the United States the Centers for Disease Control and Prevention (CDC) conducts surveys and monitors the prevalence of autism in the U.S. The CDC issues reports with critical information directed at helping to assess the health, education and social services needs of Americans with autism. The CDC’s information is critical to the development of corresponding U.S. government policies and programmes and budgets.
However in our country, while we do have a Public Health Agency of Canada (PHAC), it does not have a Division within its Centre for Chronic Disease or anywhere else - for Autism Spectrum Disorders. Canadians need a dedicated group of experts and staff to get serious about autism surveillance, epidemiology and policy to address this urgent public health crisis.
To learn about PHAC’s roles and responsibilities visit;
www.phac-aspc.gc.ca/about_apropos/index-eng.php
Because of the incoherent, inconsistent and inadequate patchwork of provincial band-aid “solutions” to the autism crisis, Canada needs a National Autism Strategy (NAS). The only way this will happen is if we treat ASD the way we do other diseases and medical conditions; we must create a Division in our Public Health Agency, dedicated to Autism. This ASD Division would then be instrumental in contributing critical information to the development and implementation of a much-needed National Autism Strategy.
What YOU Can Do!
Autism Canada asks every stakeholder in the Autism community to take advantage of this federal election opportunity. We are asking all of you to communicate with political candidates in every political party in every riding. We want them all to make a commitment to establish a Division for Autism Spectrum Disorders within the Public Health Agency of Canada. We want their commitment in writing. Please make the positions known to other members of the community and ask all voters to take it into account before Election Day.
For those interested you can cut/paste/print and for your convenience we suggest the following:
Date
Dear Mr. /Ms., __________ (Harper, Layton, Dion, May, Duceppe)
As a Canadian I wish the Federal Government to take an important step and recognise Autism under the Federal Ministry of Health.
As a Canadian voter affiliated with formidable numbers of organizations, families and other interested registered voters, I have a question that will have an absolute effect on how I and those who share my concern, will cast our votes in the upcoming election.
The question is:
In the United States - the Centres for Disease Control and Prevention (CDC) routinely conducts surveys - and monitors the prevalence of autism in the U.S. The CDC issues authoritative reports with critical information for the assessment of the health, education and social services needs of Americans with Autism. The CDC’s information is critical to the development of corresponding U.S. government policies and programs and budgets.
However, in Canada, while we do have a Public Health Agency of Canada (PHAC), it does not have a Division within its Centre of Chronic Disease or elsewhere - for Autism Spectrum Disorders. Canadians need a dedicated group of experts and staff to get serious about autism surveillance, epidemiology and policy to address this urgent public health crisis.
Will your party commit to creating a Division for Autism Spectrum Disorders in the PHAC? We ask that you commit to ensuring that Autism Spectrum Disorders are given equal consideration with respect to the promotion and protection of the health of Canadians. We are asking for a commitment - through leadership, partnership, innovation and action in public health - which would be consistent with PHAC’s mission.
I look forward to your immediate response and consideration of this important issue shared by 84% of Canadian voters polled by IPSOS REID regarding Autism as an emerging health crisis.
Regards,
Name
Email address
Mailing address
Organization if applicable
Email addresses of Parties
info@liberal.ca (Mr. Dion)
http://www.conservative.ca/EN/4799/74614 (Mr. Harper, different options from this link to contact)
http://www.ndp.ca/contact (Mr. Layton, different options from this link to contact)
For those who do not speak French see translated info for Bloq Quebecois, below.
(We want to hear your opinion. N’hésitez pas à nous écrire pour nous faire part de vos commentaires, pour nous communiquer vos questions ou pour nous transmettre toute information que vous jugez pertinente.
Do not hesitate to write to us with your comments, to send us your questions or to send us any information you might find relevant.)
capitale@bloc.org
Elizabeth May: leader@greenparty.ca
Google alert
Attention News Editors:
Making Health Research Work For Patients
<<
McGuinty Government Supporting Research To Create Jobs, Better Health
Care
>>
TORONTO, Sept. 18 /CNW/ -
NEWS
Research aimed at improving therapies for autistic children, winning the
battle against breast cancer and improving treatments for heart and lung
disease are among the innovative health care research projects receiving
$21 million in funding from the province.
The funding from the Ontario Research Fund
(www.mri.gov.on.ca/english/programs/ResearchFund.asp) will support
14 institutions and 116 projects and involve nearly 1,000 health scientists
and researchers across the province.
Provincial support for health research is an important part of Ontario's
Innovation Agenda (www.mri.gov.on.ca/english/programs/oia/program.asp) -
turning great ideas into good-paying jobs and better lives for Ontario
families. Supporting innovation is part of the McGuinty government's
five-point plan for growing Ontario's economy
(www.fin.gov.on.ca/budgetsplash).
QUOTES
"Ontario is a global leader in the health sciences and we punch well
above our weight when it comes to research and commercialization. Today's
investment is an important part of our government's $3-billion commitment to
enable our top researchers to turn their best ideas into new knowledge, new
technologies, improved therapies and better disease prevention," said Minister
of Research and Innovation John Wilkinson
(www.mri.gov.on.ca/english/about/MinisterBio.asp).
"By supporting our health researchers we are helping them turn their best
research and ideas into quality health care. These types of innovations will
help reduce wait times and improve access to care for all Ontarians," said
Minister of Health and Long-Term Care David Caplan
(www.health.gov.on.ca/english/public/ministry/bios/dcaplan.html).
"University research and discoveries are important engines of economic
growth in today's global, knowledge-based economy. This tremendous investment
in world-class research at universities across our province is fundamental to
keeping Ontario at the forefront of global innovations in health science and
health care, while at the same time producing highly qualified personnel and
enabling Ontarians to realize their dreams," said Paul C. Genest, President of
the Council for Ontario Universities.
QUICK FACTS
<<
- Ontario is the largest hub of life sciences activity in Canada and
the fourth largest biomedical research centre in North America.
- Ontario has 25 research and academic hospitals that employ
10,000 scientists and clinical investigators and conduct $850 million
in research annually.
- This fall the province is announcing $37 million worth of investments
through the Ontario Research Fund, including today's announcement.
This funding will support the efforts of more than 1,800 researchers
working on more than 200 projects at 17 institutions across Ontario.
LEARN MORE
Learn more about the Ontario Research Fund
(http://www.mri.gov.on.ca/english/default.asp).
Learn more about Ontario's Innovation Agenda
(http://www.mri.gov.on.ca/english/programs/oia/program.asp).
-------------------------------------------------------------------------
ontario.ca/innovation-news
Disponible en français
BACKGROUNDER
-------------------------------------------------------------------------
BUILDING ONTARIO'S INNOVATION ECONOMY
Inventing The Future Of Health Care
>>
Ontario is committed to supporting research and innovation as a means of
turning global challenges into our next generation of jobs - and most
importantly, to create a higher quality of life for Ontario families.
Ontario's $3-billion Innovation Agenda is about making investments in our
greatest asset - our people and our best ideas - to make this province
healthier, greener and to strengthen our economy. We are focused on supporting
innovation that will tackle climate change, lead to better health care, and
ignite growth in the industries that will shape our future.
LEGACY
Ontario has a legacy of research excellence and innovation, of turning
our best science and ideas into world-leading vaccines, better ways to treat
and prevent disease, and health technologies.
Ontario discovered stem cells and insulin. We invented the pacemaker. And
right now Ontario companies are building cleaner ways to generate the energy
we need, by engineering new technologies that do a better job of tapping into
the power of the sun, wind, and water. From IMAX to the Blackberry to the
science and technology that helped put a man on the moon and robots on Mars,
Ontario ideas, discoveries and inventions reach around the globe.
And with support from the Ontario government, innovative people and
companies are turning solutions to global challenges like cancer and climate
change into cleaner air, better health care, and better, more sustainable jobs
for the 21st century.
ONTARIO RESEARCH FUND
Through the Ontario Research Fund, we are strengthening Ontario's legacy
of innovation and ingenuity by supporting our best and brightest researchers,
the world-class research institutions that support their work, and the
entrepreneurs that are helping to bring their best ideas to the global market.
ONTARIO INNOVATION AGENDA
The Ontario Research Fund is an important part of Ontario's Innovation
Agenda. Supported by $3 billion over eight years, Ontario's Innovation Agenda
is focused on supporting world-class research and innovative companies in
areas where the province already is, or can be, a global leader.
<<
Ontario's priorities are:
- Tackling climate change through bio-based, environmental, alternative
energy and clean technologies
- Advancing the digital universe through new information and
communications technologies
- Conquering disease through life sciences, biotechnology, advanced
health technologies and pharmaceutical research.
LIFE SCIENCES, BIOTECHNOLOGY, ADVANCED HEALTH TECHNOLOGIES AND
PHARMACEUTICAL RESEARCH
>>
Ontario has the third largest concentration of life sciences companies in
North America - generating annual revenue of more than $14 billion, and
employing 43,000 people in more than 850 companies.
With 25 research and academic hospitals employing 10,000 scientists,
clinical investigators and other researchers conducting $850 million in
research annually, Ontario is the largest hub of biomedical activity in Canada
and the fourth largest biomedical research centre in North America.
In Toronto - Ontario's largest research centre - much of the research is
concentrated in clusters of activity, creating opportunities for
collaboration, investment, information sharing and academic-business
development opportunities. Within two kilometres of the downtown University of
Toronto campus, there are nine research hospitals, roughly 5,000 scientists,
and research budgets totalling about $1 billion a year. And since 2005,
93,000 square metres of research space have been added in this zone, with
twice as much more planned.
Cancer and Stem Cell Research
Stem cells (http://en.wikipedia.org/wiki/Stem_cell) were discovered in
the early 1960s by Dr. Ernest McCulloch
(http://en.wikipedia.org/wiki/Ernest_McCulloch) and Dr. James Till
(http://en.wikipedia.org/wiki/James_Till), two scientists working at the
Ontario Cancer Institute (http://www.uhn.ca/research/institutes/oci.asp).
Ontario continues to be a leader in stem cell research today. Ontario is also
home to the Stem Cell Network, made up of 80 experts drawn from universities
and hospitals across Canada.
And Ontario is at the forefront of discovering a global solution to
cancer.
Ontario has invested $347 million over five years in the Ontario
Institute for Cancer Research - the first collaborative institute in Canada to
focus on the entire spectrum of cancer challenges - from better prevention to
discovering better treatments.
The province is also investing $40 million over 10 years in the
International Cancer Genome Consortium, which will work with the Ontario
Institute for Cancer Research (OICR) to coordinate the work of scientists
around the world. The goal of this consortium is a co-ordinated global effort
to unlock the genome of the 50 most common cancer tumours that plague
humanity. The project will generate 25,000 times more data than the human
genome project.
Not only has Ontario been chosen to head the world headquarters of this
global effort, one of the largest scientific projects in history. Ontario has
also been tasked to serve as the global data centre. In essence, we must
create the largest health informatics database in history.
Biotechnology
Toronto is now the fourth-largest biomedical research complex in North
America, with nine research institutes, 5,000 faculty appointments in medical
research, 2,000 graduate students, and 1,100 post-doctoral and clinical
fellows.
Ontario is home to 140+ companies with revenues of $2.8 billion and
5,200 employees - more than any US state except California and Massachusetts,
including global giants such as Amgen, Genzyme and Sanofi Pasteur.
Medical and Assistive Technologies
Global giants like GE Healthcare and Johnson & Johnson have chosen
Ontario as a preferred location to conduct research and develop medical and
assistive technologies. Across the province, close to 675 cutting-edge
companies conduct business that generates revenues of $4 billion and over
22,000 employees.
Biopharmaceuticals
Ontario is home to major pharmaceutical companies with sales of
$7.5 billion and some 18,000+ employees - including Apotex, AstraZeneca,
Baxter Healthcare, Bayer, Eli Lilly, Genzyme, GlaxoSmithKline, MDS Nordion,
Novartis and Pfizer.
TURNING IDEAS INTO REALITY
Ontario is also home to innovative people and companies that are global
leaders, at the forefront of global advances in health care and health
technologies, including:
<<
- GestureTek Health (http://www.gesturetekhealth.com)
- Dalsa Corporation (http://www.dalsa.com)
- RapidMind (http://www.rapidmind.net)
- Atreo Medical (http://www.cprglove.com)
-------------------------------------------------------------------------
ontario.ca/innovation-news
Disponible en français
>>
For further information: Sandra Watts, Minister's Office, (416)
314-7067; Perry Blocher, MRI Communications Branch, (416) 326-7717
From a listmate - RE-POSTING
Hi all,
The Ombudsman of Ontario, who's responsible for investigating
complaints against provincial government organizations, is currently
soliciting information from families dealing with autism about their
experiences accessing IBI therapy. He's collecting information over
the next couple of weeks, so this is an ideal opportunity to make your
voice heard and to help create some momentum to possibly trigger a
formal investigation into the delays in timely and equitable health
care and education for children with autism. For those receiving this
message who work with families with autism, it would be greatly
appreciated if you could forward this important information onto them.
The Ombudsman has put forth the following three questions to families
with autism, and answers can be e-mailed to info@ombudsman.on.ca.
1) Is your child on the IBI waitlist and if so, how long? (eg: "My
child has been on the waitlist since May 2006", or "My child is
currently receiving IBI but was on the waitlist for 3 years", etc.)
2) Is your child having to receive IBI outside of school and if so,
why? (eg: "My child is receiving IBI outside of school because
although I have asked if my child can attend for at least part of the
school day with direct support from his/her IBI Instructor Therapist,
the school has not allowed this", or "My child is receiving IBI
outside of school because he/she is only 3 years old", etc.)
3) Has your child been discharged from IBI and why? (eg: "My child was
receiving IBI but was cut-off when he/she turned age six when the age
stipulation was still in place and now he's/she's back on the waitlist
again", or "My child was cut-off of IBI in September 2007 because they
said that he/she is not progressing enough", etc.)
Cheers,
*********8
From a listmate
Outreach Clinic
For Children (& Adults) With Autism, AD(H)D and Behaviour Disorder
Also treating:
Autism Related Disorders: Aspergers Syndrome, PDD (Pervasive
Developmental Delay), Childhood Disintegrative Disorder, Tourettes
Syndrome, Seizure Disorders, Apraxia and more.
November 15 & 16, 2008
(Saturday & Sunday 8:30am - 6:00pm by appointment only)
Touchstone Naturopathic Center
950 Southdown Road, Unit B5
Mississauga, Ontario L5J 2Y4
(For Driving Directions please visit www.Touchstonecentre.com)
Scott Clack, B.Sc., N.D. will see patients on Saturday & Sunday from
8:30am to 6:00pm by appointment only. Our goal is to improve the
health and well being of individuals using integrative medicine, in
particular, biomedical treatment options. Specialized testing, not
available at traditional labs will be offered. These tests are
designed to determine abnormalities associated with heavy metal
toxins, intestinal pathogens, food allergies, immune deficiencies,
nutritional imbalances and more.
Scott Clack, B.Sc., N.D. received a Bachelor of Science (Honours)
from the University of Toronto (Mississauga) in 1981, and a Doctorate
of Naturopathic Medicine from Bastyr University in Seattle 1997. He
practiced in B.C. for 2 years after graduation, and moved home to
Ontario in 1999.
Scott Clack has been specializing in the treatment of Autism
Spectrum Disorders (ASD) for more than six years. In working with
these families, he has researched and implemented many treatments
that are recommended by Defeat Autism Now! His formal training in
treating ASD patients includes: Open Windows (Toronto) training with
Drs Bradstreet and Kartzinel in 2003; Open Windows (Toronto) with
Dr. Bradstreet and Elaine Gotschall, Toronto mini- Defeat Autism Now!
2005; Physicians training, The Great Plains Laboratory, Inc.
Biomedical Physician conference in Orlando in 2006; the Defeat Autism
Now! conference in April 2006 and The Great Plains Laboratory, Inc.
Physician Training conference in March, 2007. In addition, Scott
Clack was voted Naturopathic Doctor of the year in 2005 by his
Ontario peers. He has treated over 200 patients with Autism Spectrum
Disorders and is one of the lead physicians involved in The Great
Plains Laboratory, Inc. practitioner mentoring program in Canada.
A licensed Canadian phlebotomist, specializing in pediatric
patients, will perform all laboratory procedures for blood collection
at the outreach clinic. All other specimens, including urine and stool
will need to be collected at home. Any other recommended test kits
will be given to parents to take home from the clinic. All kits will
have a prepaid FedEx envelope to send back to The Great Plains
Laboratory, Inc. once specimen collection has been completed. Results
of testing will be sent to Dr. Clacks office within 4-6 weeks.
The Comprehensive Autism Panel (CAP) is being offered at a
discounted price of $1,556 to be paid by credit card or money order
in US$.
Tests Can be purchased individually
Cash Price
Organic Acid Test
$240.00
Urinary Peptide
$110.00
Comprehensive Stool Profile
$330.00
IgG Food Allergy Profile
$219.00
Copper/Zinc Profile
$165.00
Immune Deficiency Profile
$239.00
Metals Hair Profile
$135.00
C-Reactive Protein
$70.00
Streptococcus Antibodies Panel
$70.00
Pre-albumin
$70.00
Advanced Cholesterol Panel
$110.00
Shipping & Handling Fee
$150.00
Regular Cash Price
$1908.00
Special Discounted Package Price $1556.00
*This special pricing includes a shipping and handling fee (return
shipping of the specimens will be paid by Great Plains for up to two
shipments), test kits and complimentary phlebotomy services.
Shorter panels & additional testing available.
Three hour fasting is recommended before the blood draw for the
Advanced Cholesterol Panel and the Immune Deficiency Panel.
It is encouraged to increase fluid intake at least 24 hours prior to
appointment which will help with the blood draw process.
The fee for Dr. Clackss initial 30-minute visit is $200.00 CDN and
is due at the time of the appointment in the form of a cheque or
credit card. Dr. Clack will develop a specific care plan for each
individual according to the testing results.
Appointments for follow-up consultations will be made at Dr. Clacks
office in Mississauga, Ontario. Information regarding the physicians
phone number and office hours will be provided at the Outreach Clinic
appointment. Phone consultations are available at $200 CDN per hour.
The recommended follow up appointment is one hour in length. The
Goods and Services Tax will be charged at the applicable rate for the
doctors fees (currently 6 %.)
Please note, tests and doctors fees will not be paid or reimbursed
by the Ontario Ministry of Health Plan OHIP or any other
provincially funded health program, but could possibly be claimed as
a Medical Expense Deduction on annual income taxes. As well, contact
your Extended Health Insurance provider (if you have it) to inquire
if they may cover some/all costs (please contact us if you require
specific test coding information CPT Codes.)
The Great Plains Laboratory, Inc. has enacted a policy requiring
each outreach clinic to have a minimum of 15 patients signed up, 14
calendar days before the clinic date. Such policies must be enforced
in order to prevent last-minute sign-ups and to make the accurate
planning of such events possible. This does not mean that we will not
take appointments after the 14-day cutoff, but we ask that patients
make their appointments as soon as possible in order for us to ensure
the clinic will take place. In the case of a cancellation, please
contact Chasity Robinson or Bryan Olson at 913-341-8949 at least 72
hours prior to the appointment. Failure to do so could result in a
$200 charge to your credit card.
You are receiving this flyer because you have done testing with GPL,
attended a GPL conference, or at one time have done business with GPL
and opted to receive information about upcoming offers or new testing
developments. If you no longer wish to receive mailings from GPL,
please visit the following website at
http://www.greatplainslaboratory.com/unsubscribe/
to unsubscribe. If your contact information has changed and you would
like to update that information, please send an email to
bolson@gpl4u.com
.
Thank you,
From the Staff at The Great Plains Laboratory, Inc.
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from a listmate
Ottawa Sun
Thursday, September 18, 2008
Autism group takes funding battle to the hustings
By SUSAN SHERRING
Families dealing with autism have been "shafted" by governments of all
political stripes and are vowing to change that this federal election.
"We've been shafted left, right and centre," said Andrew Kavchak, an
active member of the autism community in Ottawa.
Kavchak, like hundreds of parents across the country, is putting his
hope on a new national group called Medicare for Autism Now Society.
"I'm extremely satisfied and happy there are parents within the
community no longer willing to sit back and accept their fate, who are
willing and have enough energy left over after taking care of their
children," Kavchak said.
Medicare for Autism Now is targeting select ridings across the country
which were close during the last federal election, and asking all the
candidates if they will support autism treatment being included in
Canada's medicare system.
The group had some success the last time around with two ridings in
B.C. and have now expanded their efforts to 14 ridings in four
provinces with a national campaign.
The group will be making their case in Ottawa early next month, hoping
to catch the attention of all parties fielding candidates in the
federal election.
While none of the ridings are in the Ottawa area, Kavchak says it's
only a matter of time.
"I'd like to see it being adopted and used from coast to coast until
justice is done," he said.
New Democrat candidate Marlene Rivier, running in Ottawa West-Nepean,
agrees autistic children have been treated unfairly, and she for one
is prepared to commit to funding treatment under medicare.
"I really think autistic children have been shortchanged. Commitments
have been made to them and then those governments have failed to
follow through on them. We need to extend treatment to those families,
and continue examining evidence to ensure they are producing the
outcomes we want for these children during the critical years. The
fact they are being denied the help they need is really quite tragic,"
she said.
WORKED BEHIND SCENES
Ottawa South MP David McGuinty, running for re-election for the
Liberals, says he's been working behind the scenes for the past four
years on this very issue.
Yesterday, he pledged that whether sitting on the government side or
in opposition, he'll push forward on including autism treatment under
medicare.
"We need to find out how we might proceed and whether the Canada
Health Act might be amended to include treatment for autism spectrum.
My brother (Ontario Premier Dalton McGuinty) has been seized with this
for years. It's a tough thing, a lot of demands. I've been working
hard on this and it's something we have to move forward on," he said.
Louise Witt, a parent activist and Surrey campaign co-ordinator with
the Medicare for Autism Now Society, said she has made this her life's
work.
"My son is privileged enough that we can afford the treatment. But it
disgusts me that other children don't get that just because their
parents can't afford it," she said.
The non-partisan group doesn't endorse candidates.
"We get answers from candidates and post them on the Internet. The
closer we get to our election date, we'll take out ad space in all of
the local newspapers, advise our constituents and supporters, and make
their own informed decision. We're a single-issue organization."
Witt and her group want to ensure the politicians keep their word
after the election.
"We've been lied to many times. Our real work begins after the
election. We expect politicians to have integrity. We'll tell them,
'If you go back on your word, we will out you in a very public
manner'. "
------------------------------------------------------------
Please forward the above invitations to your contacts – you may not be able to open the Publisher document – the information on it is below. Thank you very much!
Lori
PADDLE
Providing Adults with Developmental Disabilities Life Experiences
YOU ARE INVITED
TO
HELP US CELEBRATE OUR FIRST ANNIVERSARY!
COME AND CHECK OUT OUR NEW LOOK
AND
OUR STATE OF THE ART COMPUTER ROOM
ALSO
WE HAVE AN IMPORTANT
FUNDING ANNOUNCEMENT !
When: Friday, October 3rd at 10:00 am
Where: Chippewa Secondary School (front foyer)
Coffee and treats provided—RSVP www.paddlenorthbay.ca or 493.2401
From a Listmate
To all: September 23rd, 2008
Here is a follow up to the questions that I have requested be asked during the Federal Party Leader Debate. question@electiondebate08.ca
Mr. Layton (NDP Leader) is the only leader/candidate that has taken the time to answer in writing/email to the questions that I have submitted. I have had other verbal opinions.
What about the rest of the leaders/candidates???
Our family votes will be going with the party that will guarantee that our grandson and all Autistic Children get the treatment/education that they deserve as Canadian children.
During the last Federal Election campaign there was lots of discussion about Autism.
After the election many parents of Autistic Children received a letter from Mr Clement saying that the Federal Conservatives see Autism as a Provincial Issue.
What a change of opinion in a few short months.
Many other Stategies are supported by the Federal Government and are on the books for the Provincial Governments to follow. Why not a National Autism Strategy???
This is the only way that all Canadian Children will get equal treatment all across Canada.
We all know that the bandage solution that our present Ontario Provincial Government has chosen to do, has helped some children but is sure has left a lot of Autistic Children out.
Our Province/Country has forced many parents (Doctors, Ministers, Football Players etc...) to move to other Provinces/Countries that offer better support for their Autistic Children. What a Shame that is!!!
One opinion that I have had is:
Get Autistic Children and their Therapists into the empty classrooms across the Province/Country. Teachers and Therapists will be able to interact daily so that they will be able to understand what is needed, their the professionals not the Politicians.
All children will be able to interact under supervised conditions in the school yards.
This way the general public will understand what Autism is all about.
The rental money saved can be used to educate.
Give the teachers/therapists the tools to work with and get the job done.
Please ask each incumbent/candidate, what their stand is on voting for a National Autism Strategy and ask them if they will respond in writing/email as has Jack Layton.
Read on for Mr. Laytons commitment: and get your questions out there.
Dennis Lendrum
There is Nothing Stronger than the Heart of a Volunteer
Yours in Safe Snowmobiling Always
Visit: www.rcsasnow.com
Dennis Lendrum
--- On Fri, 9/19/08, New Democrats
From: New Democrats
Subject: RE: Autism
To: "'pawpasno@yahoo.ca'"
Received: Friday, September 19, 2008, 3:01 PM
Dear Dennis,
Thank you for writing to share your concerns about support for autism. I apologize for the delay in my reply.
First, both NDP MP Peter Stoffer and I have challenged the federal government for not providing funding in its last budget to help families with autistic children. I fully recognize that families with autistic children are in crying need of support and they are very disappointed that the Conservative government has ignored their needs in their budget spending.
As you mentioned, in the April 3, 2006 to September 14, 2007 session of parliament, MP Shawn Murphy introduced his private members` legislation, Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act. C-304 received first reading on May 17, 2006 but unfortunately it did not make it to third reading or a final vote because it died when the Harper government chose to prorogue that Parliament. I am also aware that on March 29, 2007, the Standing Senate Committee on Social Affairs issued a report on the Funding of Treatment for Autism titled: "Pay Now or Pay Later: Autism Families in Crisis" in which they recommended that the federal government demonstrate some leadership in the autism file by collaborating with the provinces to create a National Autism Strategy and address the funding of treatment. However, this report was not put before parliament for a vote.
New Democrats recognize that providing support for families with Autistic children has to be a bigger priority for the federal government than another corporate tax cut. That is why Peter Stoffer has introduced Private Members' Bills, C-211, An Act to amend the Canada Health Act (Autism Spectrum Disorder) to "ensure that the cost of Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) for autistic persons is covered by the health care insurance plan of every province" , and C-212 ,An Act respecting a Canadian Autism Day. The federal NDP is proud of Mr Stoffer's efforts to help put the needs of Autistic children on the political map.
I appreciate hearing from you on this important matter, and look forward to the opportunity to debate this issue with the other party leaders. I hope I can count on your support moving forward. We invite you to check our website at www.ndp.ca to learn the latest about our team of New Democrats and the campaign.
Sincerely,
Jack Layton’s New Democrats
Putting you and your family first.
Jack Layton et le NPD
Mettre vos priorités et celles de votre famille au premier plan.
________________________________________
This from a listmate
Clement open to drug plan but sees other options
Updated Tue. Sep. 23 2008 10:09 AM ET
CTV.ca News
Conservative Health Minister Tony Clement says he's open to creating a
catastrophic-illness drug plan such as the one promised by the
Liberals and the New Democrats, but a brand new initiative isn't the
only solution.
Speaking to CTV's Canada AM on Tuesday, Clement said there is already
money in the health care system that could go towards prescription
drugs if the provinces and feds could work together on the issue.
"What I've said to my provincial counterparts is I'm willing to go
forward with a new initiative, but there's money in the system now,"
Clement said from Huntsville, Ont.
"If we work together to do bulk purchasing of pharmaceutical products,
if we work together to reduce our generic drug costs -- because our
costs are 25 to 30 per cent higher than they have in the U.S -- then
we can find the money to put to new, innovative drugs or drugs for
rare diseases."
Clement also suggested the Liberals and NDP would simply throw money
at the issue rather than coming up with a real solution.
Both of the Conservatives' primary opponents have promised to provide
funding for Canadians dealing with the costs of catastrophic illness
or disease.
Liberal pledge
Liberal Leader Stephane Dion promised $900 million over four years to
create a new plan.
Calling it "one of the most fundamental policies a government can
provide to its citizens," Dion said the proposal would cover the costs
of drugs for serious illnesses such as cancer, diabetes, and
arthritis.
"In the Canada we want, Canadians battling a serious illness should
not be forced to sell their house to buy the prescription medicines
they need -- not in our Canada. Never," Dion said when he made the
campaign promise.
New Democrat promise
New Democrat Leader Jack Layton's drug proposal would cover 50 per
cent of catastrophic drug costs for seniors and families facing
illness, above $1,500 per year per person.
"The goal of this plan is to provide Canadians with a safety net so
that they won't be bankrupted by prescription drug costs," Layton said
in a news release.
"It will give every Canadian -- wherever they live, whatever they earn
or have saved -- a basic guarantee and a basic level of help and
financial security."
From a listmate
Tuesday, September 23, 2008
Wall Street Journal
Charlatans To the Rescue
Linda Seebach
Autism's False Prophets
By Paul A. Offit, M.D.
(Columbia University Press, 298 pages, $24.95)
Ever since psychiatrist Leo Kanner identified a neurological condition he called autism in 1943, parents whose children have been diagnosed with the most severe form of the illness -- usually in the toddler stage, before age 3 -- have found themselves desperately searching for some way not to lose their children to autism's closed-off world. Unfortunately, such parents have often found misguided doctors, ill-informed psychologists and outright charlatans eager to proffer help.
Paul A. Offit, a pediatrician and the chief of infectious diseases at the Children's Hospital of Philadelphia, has gathered this sorry parade of self-styled samaritans for "Autism's False Prophets," an invaluable chronicle that relates some of the many ways in which the vulnerabilities of anxious parents have been exploited.
First, though, some basics about the disorder: According to the Autism Society of America, children and adults with autism "typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities." But there is a wide range of severity, hence the use of the umbrella term "autism spectrum disorder." At the less severe end of the spectrum, a diagnosis of Asperger's syndrome is sometimes applied to cases where there is no delay in children's acquisition of language. (The Austrian pediatrician Hans Asperger noted this milder form of autism in 1944, but it wasn't formalized as a diagnosis until the 1990s.)
For a disorder that has been noticed and described relatively recently, autism is quite common, affecting as many as one in 150 children. And the frequency of the diagnosis is increasing, according to the Centers for Disease Control and Prevention. The natural reaction to such an increase is: "Something must be causing it." The next step is: "Someone is to blame" -- followed by lawsuits, if only people can figure out whom to sue.
Dr. Offit notes two likely causes of the increase in autism diagnoses. One is that the definition of the disorder has broadened over time, so that children with mild symptoms are now being diagnosed when once they would have been regarded as merely quirky. That's certainly plausible. My son, now in his mid-30s, sought a formal evaluation a year ago, just to satisfy his curiosity about whether he's really an Aspy, as those with Asperger's sometimes call themselves. And indeed he is. But when he started school three decades ago, and his teachers worried about why he seemed to have trouble making friends, no one so much as mentioned a neurological problem as a possible explanation. Today they would, and they'd also have more useful guidance on what might help him (he seemed fine to us, his parents).
The second cause of the rise in autism diagnoses, according to Dr. Offit, is that in earlier times children with severe symptoms of what we now recognize as autism were more likely to be diagnosed, often incorrectly, as mentally retarded.
Just as autism is being found more often, so, it seems, are dubious explanations for the source of an illness that so far has defied medicine's attempts to find its origins. The parade of "false prophets" began lining up soon after the disorder was defined.
At mid-century, psychoanalyst Bruno Bettelheim set up a school in Chicago, and published a book, based on his theory that autism was precipitated by the "black milk" of mothers who treated children with a frosty emotional distance. His claims of successful treatment were widely disseminated; that the claims were fraudulent, not so much.
Next in Dr. Offit's parade are the advocates of "facilitated communication" from the 1970s and 1980s, who claimed that their approach enabled nonverbal children to express their true selves. Facilitated communication entailed having a "facilitator" support a child's hand or arm, helping the child type on a keyboard or use other devices. The method was easily debunked with a simple experiment: Don't allow the facilitator to see what the child is seeing and suddenly the child's communication skills evaporate. But facilitated communication flourished for years. Nobody thought to do the experiments until the children's true selves -- or at least their imaginative helpers -- began recounting false tales of sexual abuse.
In 1998, a British doctor named Andrew Wakefield joined the ranks of autism explainers, announcing in The Lancet that the disorder was caused by the triple vaccine for measles, mumps and rubella (MMR) given to young children. Only later did it emerge that the children he studied were clients of a lawyer who was searching for evidence he could use in a lawsuit. The disclosure prompted most of the co-authors of Dr. Wakefield's article to disavow it.
The MMR episode seems like just a prelude to the American manifestation of the childhood-vaccines panic of recent years. As Dr. Offit reports, the autism bogeyman is now the use of thimerosal, a preservative in vaccines. Thimerosal, as many studies in several countries have shown, is safe; whatever may be causing the increase in autism diagnoses, thimerosal isn't it. But in an excess of caution, federal agencies pushed to have thimerosal removed from almost all childhood vaccines.
The government's action was unnecessary but in itself not harmful. The problem was that removing the preservative seemed to confirm parents' fears: If thimerosal wasn't harmful, why get rid of it? The government's action did have the useful side effect of setting up a natural experiment. If thimerosal had been a cause of autism, the appearance of new cases should have begun to slow. In fact, autism diagnoses continued to climb.
Of course, the evidence rejecting thimerosal as a cause of autism had no effect on true believers, whose ranks include distraught parents and those beating the drums for their own patented remedies. Dr. Offit wonders why parents who distrust scientists and public health officials for refusing to admit that vaccines cause autism -- after all, they don't -- "haven't been similarly skeptical of the vast array of autism therapies, all of which are claimed to work and all of which are based on theories that are ill-founded, poorly conceived, contradictory, or disproved." Good question.
---
Ms. Seebach is a writer in Northfield, Minn.
www.awares.org/conferences
The series of one-day seminars on Awares - Autism Cymru's pioneering website - involving the world's leading autism experts continues on Wednesday, October 1, 2008.
The participant at this fifth online autism seminars in 2008 is Dr Darold Treffert, the world's leading authority on autistic savants. He has been studying the savant syndrome since he met his first savant in 1962, when he developed a Children's Unit at a hospital in Wisconsin, USA. He is a clinical professor in the Department of Psychiatry at the University of Wisconsin and on the staff of the Behavioural Health Department of St. Agnes Hospital in Fond du Lac, Wisconsin. He also conducted one of the world's first epidemiological studies of autism in 1970.
Dr Treffert maintains a very active web site on savant syndrome at www.savantsyndrome.com through the Wisconsin Medical Society. He is also author of Extraordinary People: Understanding Savant Syndrome (1989), the first comprehensive book on the condition, and has participated in numerous documentaries on savant syndrome and autistic disorder. He has been studying the syndrome for nearly 40 years and he was a consultant on the1988 movie, Rain Man, in which Dustin Hoffman won an Oscar for his portrayal of an autistic savant. Dr Treffert is a clinical professor at the University of Wisconsin Medical School and is on the staff of St Agnes Hospital in Fond du Lac, Wisconsin.
The seminar will open at 12.01am British time on October 1, 2008 and run throughout that day.
Don't miss this unprecedented opportunity to put your questions to Darold Treffert - and please let anyone else know who might be interested.
You can register right now for this exciting event at www.awares.org/conferences
Best wishes,
Adam Feinstein
Editor
Awares and AutismConnect
Google Alert
http://www.thepeterboroughexaminer.com/ArticleDisplay.aspx?e=1212682
News Briefs
Posted By THE CANADIAN PRESS
Posted 15 hours ago
Amber Alert issued for teen
HAMILTON -- Hamilton police have issued an Amber Alert for a missing teenager in Ontario.
Austin Large, 13, is believed to be in the company of his father Elias Large.
Austin is described as a
white male, 5 foot 5 inches, 160 pounds, with a heavy build, brush cut, light brown hair and blue eyes.
Det.-Sgt. Chris Kiriakopoulos said yesterday that the boy, from Ancaster, Ont., is autistic and does not have his medication.
The boy and his father were to have left for a fishing trip on Friday but Austin was not returned to his mother yesterday as planned.
The father and son are thought to be in a 1999 GMC Sierra truck-extended, with a white, large green tool box with Ontario licence plate number NE7 917.
People who have seen the two are asked to call 911.
From Autism Speaks
Autism Speaks is going green. Many of you may subscribe to Speaking Out, our quarterly newsletter, and you should have received, or will soon receive, your current copy of Speaking Out: Scientifically in the mail. In 2009, we will begin distributing Speaking Out electronically. Below is a link to the current newsletter online as a sample of what’s to come.
For those who already receive the newsletter, we will convert your current subscription to an email subscription with our next issue unless we hear from you.
If you would like to be added to our electronic distribution list, please fill out our simple sign-up form and make sure to check Speaking Out at the bottom (as well as eSpeaks, if you'd also like to receive the Autism Speaks weekly e-newsletter.) Otherwise, this is the only time you will receive Speaking Out via e-mail.
Thank you for your continued support of Autism Speaks.
For questions about Speaking Out, please email editors@autismspeaks.org
Please note: To view Speaking Out, you will need Adobe's free Acrobat Reader browser plug-in.
From Nancy’s list
Thanks to everyone for your responses from yesterday's posting regarding the Benchmarks meeting. Please continue to share that document to all your contacts, and use the information contained in that document to advocate against the Benchmarks being implemented here in Ontario.
-------------------------------
There are postings coming in from various listmates on responses they have recieved from the various parties in response to questions raised regarding autism during this federal election campaign. I don't mean to direct you to a certain party, but am sharing the info I have been provided regarding all the parties to help you make informed decision.
Message sent to a listmate from Jack Layton's NDP office :
From: New Democrats
Subject: RE: Autism
To:
Received: Friday, September 19, 2008, 3:01 PM
Dear Dennis,
Thank you for writing to share your concerns about support for autism. I apologize for the delay in my reply.
First, both NDP MP Peter Stoffer and I have challenged the federal government for not providing funding in its last budget to help families with autistic children. I fully recognize that families with autistic children are in crying need of support and they are very disappointed that the Conservative government has ignored their needs in their budget spending.
As you mentioned, in the April 3, 2006 to September 14, 2007 session of parliament, MP Shawn Murphy introduced his private members` legislation, Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act. C-304 received first reading on May 17, 2006 but unfortunately it did not make it to third reading or a final vote because it died when the Harper government chose to prorogue that Parliament. I am also aware that on March 29, 2007, the Standing Senate Committee on Social Affairs issued a report on the Funding of Treatment for Autism titled: "Pay Now or Pay Later: Autism Families in Crisis" in which they recommended that the federal government demonstrate some leadership in the autism file by collaborating with the provinces to create a National Autism Strategy and address the funding of treatment. However, this report was not put before parliament for a vote.
New Democrats recognize that providing support for families with Autistic children has to be a bigger priority for the federal government than another corporate tax cut. That is why Peter Stoffer has introduced Private Members' Bills, C-211, An Act to amend the Canada Health Act (Autism Spectrum Disorder) to "ensure that the cost of Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) for autistic persons is covered by the health care insurance plan of every province" , and C-212 ,An Act respecting a Canadian Autism Day. The federal NDP is proud of Mr Stoffer's efforts to help put the needs of Autistic children on the political map.
I appreciate hearing from you on this important matter, and look forward to the opportunity to debate this issue with the other party leaders. I hope I can count on your support moving forward. We invite you to check our website at www.ndp.ca to learn the latest about our team of New Democrats and the campaign.
Sincerely,
Jack Layton’s New Democrats
Putting you and your family first.
Jack Layton et le NPD
-------------
And this from the Green Party office:
Dear XXXXXXXXX:
On behalf of Elizabeth May, I would like to thank you for your email and for sharing with us your concerns.
While the Green Party of Canada does not have a specific policy on autism at this time, we are strongly in favour of the Department of Health furthering its mandate to include mental health, as well as developmental health, such as autism. Similarly, we would be committed to expanding the mandate of the Public Health Agency of Canada to include studies on developmental and mental health.
The Green Party of Canada is committed to comprehensive health care and health promotion. Our policy document, Vision Green, is a testament to our commitment to change the way health care is viewed in Canada. With regards to social, mental and developmental health, the Green party is committed to doing the following:
• Increase transfer funding for non-institutionalized mental health patients including children and youth to provide adequate community-based support and outpatient and inpatient care by mental health practitioners, including in rural Canada where lack of facilities and trained professionals is acute.
• Support a public health initiative to reduce the use of psychoactive drugs through better rehabilitation and prevention programs especially for children.
• Require greater involvement of people dealing with personal mental or developmental health problems in research planning, policy development, program evaluation and other decisions that affect their lives and communities.
For further information on our health care and health promotion policies, visit our policies online:
http://www.greenparty.ca/en/policy/visiongreen/partfour#_Toc180047636
As mentioned, we do not have a policy on this issue at the present time. I would strongly suggest lobbying your local Green party candidate to make this an issue within the party. We will be holding our national policy convention towards the end of the year, and your input would be greatly valued.
I hope that I have been able to address some of your concerns regarding our policies on comprehensive health care. Please do not hesitate to contact us if you have further questions, or feedback regarding the responses which I have provided you.
Once again, thank you very much for bringing your concerns to our attention. We hope to have your support in the election and in the future.
With warmest regards,
Kaitlin Wainwright, GPC
--
Green Party Information Centre
Centre d'information du Parti Vert
1-866-868-3447
www.greenparty.ca/donate
Vote for Tomorrow
Votez pour l'avenir
------------------------
And this was from the Facing Autism in New Brunswick blog:
Monday, September 22, 2008
Autism Position of the Liberal Party of Canada
The Liberal Party of Canada recognizes the challenges that autistic Canadians face, as well as those affected by autism. That is why we had invested $16.2 million in autism research grants, which funded 32 separate projects. Although the delivery of health care services falls under provincial and territorial jurisdiction, a Liberal government would be open to discussions with the provinces, territories and relevant stakeholders about considerations for those who are living with or affected by autism.
Although the delivery of health care services falls under provincial and territorial jurisdiction, a Liberal government would be open to discussions with the provinces, territories and relevant stakeholders about considerations for those who are living with or affected by autism."
The above information follows a backgrounder on autism and autism issues in Canada from the perspective of the Liberal Party of Canada. This information was provided by a Liberal Party staffer to a representative of an autism organization and appears to be the official Liberal Party position. It essentially offers dialogue but makes no commitments for federal funding of autism treatment. It is a very weak and disappointing statement from the party of Charlottetown MP Shawn Murphy, the author of private members Bill C-304, which sought amendment of the Canada Health Act to include ABA treatment for autism. Most Liberal MPs, including Stephane Dion, voted in support of that motion. Now they make no commitment except to talk in the future.
Meanwhile autistic children across Canada will be going without the effective treatment they need.
-----------------------
This was posted on the Medicare for Autism website. I would promote everyone to check out the blog on that website for a cross posting from all the candidates in the targeted ridings across the country. This was especially concerning and perhaps shows their weakest link. If someone has a more ensightful response from the Conservative camp, please forward it to me so we can show what the party is stating across the country, and not just from this one unfortunate candidate. :
To all voters in Vancouver Quadra:
We have attempted to meet with Deborah Meredith, the Conservative candidate, and she has sent us the following:
"If elected I would be happy to meet with you to talk about autism and the Canada Health Act.
I am awfully busy right now trying to win this election as I'm sure you can understand."
------------------
And this response was on a slightly different question raised, although still in regards to autism related issues. A resposne from the Green Party thus far and comments as shared by one of our listmates;
Dear Friends,
Below is the reply (our listmate) received from the Green Party of Canada (the only reply I (our listmate) have received so far) to my question to candidates from the Liberals, NDP & Greens about support for Autism within their announced Universal Child Care platforms. (The Conservatives do not have universal child care in their platform so the question could not be asked to them).
While the Green Party of Canada (GPC) admits to not have a specific Autism policy now, the key paragraph in their reply is this:
"I would strongly suggest lobbying your local Green party candidate to make this an issue within the party. We will be holding our national policy convention towards the end of the year, and your input would be greatly valued."
Accordingly, I (our listmate) would urge you to contact your GPC candidate and let them know that Autism is an important federal policy issue for you.
Even though the GPC may never form the government in Canada remember that the NDP (and CCF) platforms included Medicare and other social programs long before the larger parties picked up the ideas and eventually implemented them. Having any party include Autism in the discussion at the federal level is a big step forward. Until now our federal politicians have successfully deflected the issue back to the provinces, resulting in the sad patchwork of programs and variable access we have today.
There are two points where Autism can be discussed without federal politicians easily passing the buck back to the provinces. One is any discussion of a National Childcare Policy (see my original note at the bottom of this thread for details), and the second is the inclusion of Autism within the scope of the Public Health Agency of Canada (PHAC).
Currently PHAC does not have a Division within its Centre for Chronic Disease, or anywhere else, for Autism Spectrum Disorders. Canadians need a dedicated group of experts and staff to get serious about autism surveillance, epidemiology and policy to address this urgent public health crisis.
Contrast this with the United States where the Centers for Disease Control and Prevention (CDC) conducts surveys and monitors the prevalence of autism in the U.S. The CDC issues reports with critical information directed at helping to assess the health, education and social services needs of Americans with autism. The CDC’s information is critical to the development of corresponding U.S. government policies and programmes and budgets.
----- Original Message -----
From: Green Party of Canada Info Centre
To:
Sent: Monday, September 22, 2008 8:33 AM
Subject: Re: Does your party's definition of Universal Childcare include our children?
Dear XXXXXXXXXX:
On behalf of Elizabeth May, I would like to thank you for your email and for sharing with us your concerns.
While the Green Party of Canada does not have a specific policy on autism at this time, we are strongly in favour of the Department of Health furthering its mandate to include mental health, as well as developmental health, such as autism. Similarly, we would be committed to expanding the mandate of the Public Health Agency of Canada to include studies on developmental and mental health.
With regards to social, mental and developmental health, the Green party is committed to doing the following:
• Increase transfer funding for non-institutionalized mental health patients including children and youth to provide adequate community-based support and outpatient and inpatient care by mental health practitioners, including in rural Canada where lack of facilities and trained professionals is acute.
• Support a public health initiative to reduce the use of psychoactive drugs through better rehabilitation and prevention programs especially for children.
• Require greater involvement of people dealing with personal mental or developmental health problems in research planning, policy development, program evaluation and other decisions that affect their lives and communities.
For further information on our health care and health promotion policies, visit our policies online:
http://www.greenparty.ca/en/policy/visiongreen/partfour#_Toc180047636
As mentioned, we do not have a policy on this issue at the present time. I would strongly suggest lobbying your local Green party candidate to make this an issue within the party. We will be holding our national policy convention towards the end of the year, and your input would be greatly valued.
With regards to our policies on child care, we are committed to providing universal access, which means not only increasing the number of spots available, but also the training available, including how to identify developmental delays. We also fully support the choice of parents to stay at home to care for their children, and would work to ensure they had the financial support required, specifically when the child's physical, mental or developmental health was the primary reason. Once again, we do not have a firm policy on the matter, but would urge you to address these concerns either to your local candidate, or to the Green Party directly, should you wish to attend the convention as a member.
I hope that I have been able to address some of your concerns regarding our policies on comprehensive health care, autism and child care. I apologize for not having more information for you at this time. Please do not hesitate to contact us if you have further questions, or feedback regarding the responses which I have provided you.
Once again, thank you very much for bringing your concerns to our attention. We hope to have your support in the election and in the future.
With warmest regards,
Kaitlin Wainwright, GPC
On Fri, Sep 19, 2008 at 10:15 AM, Michael Paskewitz
---------- Forwarded message ----------
From:
Date: Thu, Sep 18, 2008 at 12:55 PM
Subject: Does your party's definition of Universal Childcare include our children?
To: rfrei@votefrei.ca, leader@greenparty.ca
18 September 2008
Dear Ms Frei & Ms May,
I was please to see Universal Childcare included in your party's platform for the upcoming federal election.
However, I would like to ask you if your program's definition of "Universal" includes children with developmental disabilities such as Autism, Down Syndrome, Rett Syndrome, Asperger Syndrome, and Fragile-X.
These disorders are typically diagnosed in children between the ages of 1 and 3 - prime "day care years". These children cannot, in most cases, attend a typical day care. Some will be able to attend an integrated day care program where the staff have the necessary training, and the center has the funds to provide extra support and is willing to make the necessary accommodations in their program; others will not be suitable for integration and require intensive therapy programs.
Early Intervention is critical to children with developmental disabilities, and thus an attempt to define any child care program as "universal" clearly needs to take into consideration the approximately 1% of Canadian children who will be diagnosed with one of these disorders.
Will the Green Party's National Daycare Strategy address the needs of these children?
For the strategy to be truly universal I'd like you to consider the following additions to your plan:
- Mandate and include funding for the training of child care professionals in early identification of Autism and related disorders. It is often the case that the initial identification of Autism is made by day care or teaching staff. Since it is critical that children with these disorders are identified at the earliest possible moment day care staff (especially with universal access) are key players in these children's long term outcome.
- Include funding for the training of day care staff in IBI and other recognised therapy methods so that they can incorporate them into integrated day care settings and programs.
- Include funding for day cares that provide integration places to purchase additional equipment and materials as may be required.
- Include funding for parents or day cares to be able to hire "shadows" or have the child's existing therapist work with them in the day care environment when necessary.
- For families whose children cannot be integrated into a regular day care setting include funding that helps parents place their children in full-day approved treatment programs. That is, consider a treatment centre as a day-care equivalent, but at a compensation rate that recognises the higher cost of delivering therapy over standard day care.
- Where space in suitable centre based care is not available consider making your tax credits and/or direct payments to families more in line with the true cost of home based therapy programs.
Sincerely,
XXXXXXXXXXXX
Toronto, Ontario (York Centre Riding)
--------------------
And this regarding a rally organized by the Medicare for Autism Now group:
“Medicare for Autism Now!” Rally
Saturday, October 11, 2008
2:00 p.m. to 4:00 p.m.
Iroquois Ridge Community Center,
1051 Glenashton Drive,
Oakville , Ontario , L6H 6Z4
Why should you attend?
• Despite a decade of lobbying, collaborating and litigating – autism treatment is still excluded from our universal health care system. Canadian families from BC to Newfoundland and everywhere in between are still bankrupting themselves in order to provide treatment for their autistic children.
• The current and limited patchwork of funding and services provided through the provinces’ social services ministries could evaporate tomorrow with a change of government, or the stroke of a bureaucrat’s pen. No legislation or mandate exists within these social services ministries to deliver health care or to protect and enshrine our children’s medically necessary treatment.
• In 30 years of “advocacy”, the only two initiatives which have achieved ANY success in obtaining treatment funding in any province has been litigation, and more recently, focused political action. Both were brought by volunteer parent groups.
• Autism is an epidemic of staggering proportions, it now afflicts one in every 150 children in North America, one in every 94 boys.
• Autism is an election issue in the US. Both presidential candidates, Obama and McCain have publicly identified progressive autism policy which can be viewed on their websites…Obama, “Every nation has a special responsibility to look after those who can’t look after themselves…” McCain speaking about those with autism, “Their lives should matter to the people elected to office…they matter to me.” In 2006, both Obama and McCain supported the “Combating Autism Bill” which allocated $945 million to autism research and treatment. The US federal government recognizes their responsibility to intervene by acting to avoid a major health and social crisis.
• It is time for our federal government to recognize their responsibility to act! This is not a left or right issue – it’s a right or wrong issue!
• Today, all over Canada, parents of children with autism and growing numbers of fair-minded, but outraged Canadian voters expect our federal government to show leadership and act.
• We intend to let those who govern and those who wish to govern know that they will be held accountable, regardless of party affiliation, at the ballot box on Oct. 14th.
Who should attend?
You – and every fair-minded Canadian you know!
In Canada, children with autism and their families suffer from political indifference. It will take the sustained energy and dedication of EVERY CANADIAN who desires a just society to correct this injustice. For our children’s sake, and the sake of future generations, we urge you to attend this rally. Please bring friends, family, kids, anyone and everyone you know who is appalled by the gross injustice done to our children every day by the governments of Canada and its provinces.
Come and find out how you can make your vote actually count on Oct. 14th!
Featured speakers will include:
Jean Lewis – Vancouver parent, B.C. , board member, Medicare for Autism Now Society
David Marley – Vancouver political advisor, board member, Medicare for Autism Now Society
Barry Hudson – Mississauga parent, board member, Medicare for Autism Now Society, Campaign Co-ordinator-GTA
Deborah Coyne –Toronto parent, Medicare for Autism Now supporter
Chris DuBois – Burlington parent, Medicare for Autism Now campaign activist
Please RSVP a.s.a.p. to: Jennifer O’Brien
Email: jobrien116@cogeco.ca
For more information regarding “Medicare for Autism Now!” – check our website:
www.medicareforautismnow.org
-------------------
And another family makes the choice to relocate in pursuit of meeting their childs needs:
Families forced to move to get autism therapy
Parents find help for children at specialized Kamloops centre
David Hogben
Vancouver Sun
Monday, September 22, 2008
Susie Braun and her husband Darwin thought they would be forced to move to Alberta to find therapy for their son Seth, who has autism.
They were readying to make the move from Richmond when they heard about the Chris Rose Therapy Centre for Autism in Kamloops.
Then, like a number of other families with autistic children, they chose to move, not to Alberta, but to the central B.C. Interior city.
"He needed occupational therapy. He was on the wait list forever," Susie Braun said of the two years her son waited unsuccessfully for treatment in his hometown of Richmond before the family moved in August 2004.
"In B.C., there is a drastic shortage of qualified people to work with [Seth]," Braun said.
Wanda Carisse, executive director at the Chris Rose Therapy Centre, says eight of 22 children currently being treated have moved to Kamloops specifically so they could attend the centre.
Children must live within the Kamloops school district to attend the centre -- named after a local principal -- as it is partly funded by the district.
"The primary reason we have so many children relocate is that we offer services for children after they enter school," Carisse said.
As children progress, they spend less time at the therapy centre and more time in regular classrooms.
Clair Schuman, with the Burnaby non-profit Autism Community Training, said many families with autistic children move outside of B.C. or to other parts of B.C. to find appropriate treatment for their children.
"It's a lot. It's a huge sacrifice for families," Schuman said.
Some families struggle year after year to find therapy for their children.
"It's almost a crapshoot from year to year," Schuman said.
Betty-Ann Garreck, of the Autism Parent Partners support group in Kamloops, said she is aware families have moved there to get therapy for their autistic children, but she warns them to check things out before they move.
She said parents with autistic children in Kamloops sometimes feel there are better programs for their children elsewhere.
For Susie Braun and her family, finding the Chris Rose Therapy Centre when her son Seth was approaching school age in 2004 helped them avoid a family disaster.
"All the services were accessible under one roof," she said.
She believes her son would have made little progress in a Richmond public school.
"He would have been entertainment for the other kids. He would have just been entertainment," Braun said.
Even when she could find services while living in Richmond, Braun said, programs were scattered around Metro Vancouver, which made them difficult to access.
Braun did find a daycare for Seth in Richmond, but it was not specifically for children with autism, nor did it have persons trained especially to deal with autistic children.
Julie Chambers, a part-owner of Insight Support Services Inc. in Kamloops, said about 20 per cent of the children attending Insight move from outside of Kamloops.
Chambers said Kamloops seems to be a tolerant community toward people with developmental disabilities, perhaps because many persons who were at the Tranquille Institution stayed in the Interior city after it closed in the mid-1980s.
Insight assists children with a variety of developmental problems, not just autism.
dhogben@vancouversun.com
online
Soundoff on this story at vancouversun.com/usaid
© The Vancouver Sun 2008
-------------------
From the Guelph newspaper, a story that originate in the US. I will share a personal experience, last January our family were gifted a Disney Cruise and it was a fabulous opportunity for my husband and I to enjoy some private time and for all of us to share some amazing family time. One of the staff working in the Oceaneers club had worked for the Ontario government service provider out of Hamilton delivering IBI programs to Niagara region children. She had left the job to work on the cruise ship. There were 5 children with a diagnosis of autism on the boat that week, and we found the passengers and all staff very accepting and accomodating to our families special needs.
Specialty vacations ease stress for autistic travellers
Jane Margolies
New York Times News Service
LOS ANGELES
When Victoria Berrey took a cruise with her mother and sister three years ago, she returned to her home in Santa Clarita, Calif., with one regret: She'd never be able to do a trip like it with her own children, both of whom have autism.
"I worried about the confined quarters and the need for the boys to sit still in the dining room," said Berrey, whose older son, Miles, now 12, is on a restricted diet, and whose younger boy, Mathew, 8, has difficulty with any disruptions in routine.
"Where would I take Mathew if something happened and he started yelling? What if one of them fell overboard?"
But last March Berrey and her sons did enjoy a cruise, a three-day sail on a Royal Caribbean liner with special arrangements for people who have autism. At boarding, the 11 families who had booked the Autism on the Seas package through Alumni Cruises didn't have to wait in line, and they were able to do the muster call in a private conference room rather than crowd on deck with the thousands of other passengers.
The group sat together at meals, so when one of the kids got antsy or let out a holler, there were no stares or glares or why-can't-you-control-your-child lectures. Berry was even able to drop off her boys at the kids' club where staff had been specially prepped.
"I got to experience what other parents experience all the time," she said.
For most people, family vacations amount to almost a right. But for those grappling with autism -- a brain disorder that affects one in 150 children and is four times more likely to afflict boys than girls, according to the Centers for Disease Control and Prevention -- travel is trickier.
Children diagnosed with autism, also known as autism spectrum disorder or pervasive developmental disorder, have impaired abilities to communicate and interact socially. Cases range from those who cannot speak and live largely cut off from the world around them to highly functioning individuals who can express themselves extremely well, though they might have trouble with back-and-forth conversation; many have narrowly focused interests (an obsession with fans or train timetables, for example), or display unusual behaviours like the repetition of just-heard words, or the avoidance of eye contact.
Yet for every parent who decides they're better off staying at home with a child who might have a meltdown if someone accidentally brushes against him at a hotel breakfast buffet, there are others who hit the road, particularly if there are nonartistic siblings in the equation.
The Autism on the Seas trips from Alumni Cruises, a booking agency in Shelton, Conn., have tripled the last two years, far outpacing the company's beading- and home school-themed voyages and now accounting for almost half its revenue.
At Smugglers' Notch Resort in Vermont, three-quarters of the participants in a program for people with special needs are autistic, and that number increases every year, according to Kris Connolly, manager of adaptive programs at the resort, who will provide one-on-one care if required, or steer a child with autism to a group of kids who are the same developmental, as opposed to chronological, age.
"There's been a sea change in terms of awareness," said Marguerite Colston, spokesperson for the Autism Society of America, who credits celebrities like former Miami Dolphins quarterback Dan Marino and actress Jenny McCarthy, who have spoken out on behalf of their children and those like them, with spreading the word.
"It used to be that when people heard the word autism, they thought 'Rain Man,' " Colston said, referring to the 1988 movie in which Dustin Hoffman plays an institutionalized autistic savant. "Now they realize there's a broader range." And with more and more children being diagnosed with autism -- now the fastest-growing developmental disability in America, according to the society -- "it's much more likely that any given person will know someone with autism."
All of which is not to suggest that vacations with an autistic child are easy. The very idea of travel -- the chance to see new places, try new foods, experience new cultures -- is directly at odds with the needs of many people with autism, who require strictly observed routines to feel secure.
And while the airport experience since 9-11 has become much more trying to all of us, it can be extremely challenging for someone who has inherent difficulty waiting or standing in line, not to mention answering questions posed by a security guard. "If a guard asks, 'Did you pack your own bag?' someone with autism might repeat the question, or just repeat the word, 'bag,' " said Dr. Melissa Nishawala, director of the Autism Spectrum Disorders Service at the New York University Child Study Center.
"By the time they get on the plane, the parents and the child are stressed out," said Dr. Ron Balamuth, a New York psychologist who specializes in working with children who have developmental disorders.
In June, a mother and her young autistic son were kicked off an American Eagle flight departing from Raleigh-Durham in part because of the child's behaviour.
Parents who travel with autistic offspring employ many strategies. They pick destinations that will appeal: a resort with a pool if the child loves water, or Disney World if he has a fixation with "The Lion King." They role play with their child before departure to prepare for the experience.
"I had a family with a child who had tremendous difficulty waiting in lines, waiting for anything," he said. "They turned their house into a flight gate. The family lined up with suitcases, they took off their shoes, they play acted the whole thing."
Itineraries, even daily schedules, reviewed in advance help autistic travellers know what is going to take place, and when.
Parents carry a letter from their child's doctor explaining the condition (to whip out at the airport or to present at guest relations at Disney World, where it can secure a pass to circumvent long lines). They take along familiar toys and a DVD player so favourite movies can be watched en route. And if the child is on a gluten-free, caffeine-free diet, they cart along a lot of food, too.
Gina Delgiudice-Asch, a rheumatologist, and her husband, Will, a high-school math teacher, from Princeton, N.J., have managed to range farther afield with their two children, even though their son, Andrew, 16, has autism, Delgiudice-Asch said from Avalon, N.J., where the family rented a house at the shore for a week at the end of June.
Sometimes she or her husband will take a one-on-one trip with their 13-year-old daughter, Samantha, a nationally ranked junior tennis player -- on a recent jaunt to Los Angeles, mother and daughter visited the set for Ocean's Thirteen and ducked in and out of shops on Rodeo Drive.
But often the family travels as a pack, taking along a familiar babysitter or a teacher from Andrew's school to help. They have vacationed everywhere from Winter Park, Colo., where instructors at the National Sports Center for the Disabled had Andrew on skis four hours a day, to Costa Rica.
They go to family-oriented resorts rather than exclusive places where "we might be impinging on other people's vacation," she said. And they stick to coach after a bad experience flying first class from California to Cabo San Lucas, Mexico, when Andrew, who was six at the time, started crying and a passenger complained to the flight attendant.
Though they'd like to see Europe, they haven't gone as a family. That's not because Andrew, by now a seasoned traveller, couldn't handle the flight, but because he would have too much difficulty with the time difference, his mother said.
"But we're still doing fun things on vacation as a family," she said. "We're not letting autism back us into a corner."
-------------------------------
From the Toronto Star Healthzone ssection:
I like you because you're like me
Sarah Barmak
September 20, 2008
Most couples look forward to seeing their characteristics in their children. They note with glee that a new bundle of joy – generic and blob-like though he may appear to everyone else – has Daddy's eyes and Mommy's nose.
What if Junior inherits not just cheekbones and hair colour, but Daddy's Dungeons and Dragons skills and Mommy's knack for computer programming? Are two nerds who get hitched likely to pass on nerdy genes to their hapless offspring?
It was only in the last century that the idea of marrying for romantic love became the norm, rather than for reasons of economic or social expedience. Suddenly, you were allowed – and expected – to be crazy about your mate. Nay, you were supposed to look not just for a partner, but for a "soul mate" – someone who could finish your sentences, know what you were thinking before you said it, and even admire your dusty vinyl collection.
Add to that our increasing ability to delay getting hitched until later in life, the popularity of online social networking and Internet dating sites, and the general balkanization that has characterized online culture, and it's easy to see how those with idiosyncratic tics that normally would make them stand out like a sore thumb in a small, isolated town are now more able to find mates who are just like them.
In evolutionary theory, the process is known as "assortative mating," the tendency of individuals to choose partners that are similar to them – like mating with like.
Many of us do this unconsciously and in many different ways, such as short men tending to pick short women to date, or blondes being more interested in blondes. (The opposite can occur too – people can be attracted to mates who are different from them.) While the revolution in dating has undoubtedly led to more couples that closely share beliefs, interests and goals, it has also failed as a guarantor of marital bliss.
A 2005 University of Iowa study of assortative mating and marital happiness among newlyweds found that the greater the similarity between a husband and a wife, the less that similarity seemed to play a role in their relationship's health.
Worse, it also appears couples are choosing each other for reasons that don't seem to make them happy in the long run. For example, people who tended to choose partners based on their attitudes, values and religious beliefs ended up with marriages with wildly varying success rates.
But our tendency to pick mates who are like us – combined with our newfound ease in finding partners who reflect ourselves in our more fluid, mobile society – might be having an effect not just on our marital happiness, but on our kids.
Consider that autism and Asperger's syndrome, once thought to be caused solely by environment or bad parenting, are thriving in the technically gifted community of Silicon Valley.
As IT specialists began settling down in the area over the 1990s, the number of autistic children in the area tripled. Autism, once considered extremely rare, has also skyrocketed all over the world.
Simon Baron-Cohen, a professor of developmental psychopathology and director of the Autism Research Centre at Cambridge University, thinks he knows why. Autism has long been recognized as a genetic disorder. But Baron-Cohen has recently suggested that parents who are not themselves autistic, but who both possess what he calls "systemizing" qualities – the tendency to sort things, an interest in rules or laws – have a higher risk of producing offspring that are themselves "systemizers."
People with Asperger's syndrome and autism have brains that are extremely systemizing, interested in rules to the exclusion of social skills or empathy.
Baron-Cohen – whose cousins include a composer, as well as comedian Sacha Baron-Cohen, and might know something about shared family talents – says that a number of social factors may mean that systemizers are now more likely to meet one another and have children, such as the increase in demand for people with technological knowledge, the increase in female enrolment in engineering programs and even the rise in cheap air travel.
Autism might not be the only trait passed on by parents that are similar to one another.
A recent New York Times Magazine story that investigated the rise in diagnoses of bipolar disorder in children suggested assortative mating as a possible cause, because parents who are both bipolar – and who may marry because they are more likely to understand one another's symptoms – are more likely to have bipolar children.
And there are plenty of online support groups that allow people living with mood disorders to find one another – and potentially begin relationships.
Luckily, other processes are around to discourage too much genetic similarity among partners. It has been shown that women are more attracted to the smell of men who are genetically dissimilar from them. But pheromones may count for less in an online chat room.
Whether all this means the rise of Magic Cards among grade school kids in the 1990s means a spike in technology-obsessed babies in the coming decade is yet to be seen.
Special to the Star
From a listmate
From: Gideon Sheps [mailto:gideon@sheps.net]
Sent: Monday, September 22, 2008 2:03 PM
To: Gideon Sheps
Subject: Green Party responds to my question on Autism - opportunity to put Autism on the federal agenda
Dear Friends,
Below is the reply I received from the Green Party of Canada (the only reply I have received so far) to my question to candidates from the Liberals, NDP & Greens about support for Autism within their announced Universal Child Care platforms. (The Conservatives do not have universal child care in their platform so the question could not be asked to them).
While the Green Party of Canada (GPC) admits to not have a specific Autism policy now, the key paragraph in their reply is this:
"I would strongly suggest lobbying your local Green party candidate to make this an issue within the party. We will be holding our national policy convention towards the end of the year, and your input would be greatly valued."
Accordingly, I would urge you to contact your GPC candidate and let them know that Autism is an important federal policy issue for you.
Even though the GPC may never form the government in Canada remember that the NDP (and CCF) platforms included Medicare and other social programs long before the larger parties picked up the ideas and eventually implemented them. Having any party include Autism in the discussion at the federal level is a big step forward. Until now our federal politicians have successfully deflected the issue back to the provinces, resulting in the sad patchwork of programs and variable access we have today.
There are two points where Autism can be discussed without federal politicians easily passing the buck back to the provinces. One is any discussion of a National Childcare Policy (see my original note at the bottom of this thread for details), and the second is the inclusion of Autism within the scope of the Public Health Agency of Canada (PHAC).
Currently PHAC does not have a Division within its Centre for Chronic Disease, or anywhere else, for Autism Spectrum Disorders. Canadians need a dedicated group of experts and staff to get serious about autism surveillance, epidemiology and policy to address this urgent public health crisis.
Contrast this with the United States where the Centers for Disease Control and Prevention (CDC) conducts surveys and monitors the prevalence of autism in the U.S. The CDC issues reports with critical information directed at helping to assess the health, education and social services needs of Americans with autism. The CDC’s information is critical to the development of corresponding U.S. government policies and programmes and budgets.
Regards,
Gideon
----- Original Message -----
From: Green Party of Canada Info Centre
To: gideon@sheps.net
Sent: Monday, September 22, 2008 8:33 AM
Subject: Re: Does your party's definition of Universal Childcare include our children?
Dear Gideon:
On behalf of Elizabeth May, I would like to thank you for your email and for sharing with us your concerns.
While the Green Party of Canada does not have a specific policy on autism at this time, we are strongly in favour of the Department of Health furthering its mandate to include mental health, as well as developmental health, such as autism. Similarly, we would be committed to expanding the mandate of the Public Health Agency of Canada to include studies on developmental and mental health.
With regards to social, mental and developmental health, the Green party is committed to doing the following:
• Increase transfer funding for non-institutionalized mental health patients including children and youth to provide adequate community-based support and outpatient and inpatient care by mental health practitioners, including in rural Canada where lack of facilities and trained professionals is acute.
• Support a public health initiative to reduce the use of psychoactive drugs through better rehabilitation and prevention programs especially for children.
• Require greater involvement of people dealing with personal mental or developmental health problems in research planning, policy development, program evaluation and other decisions that affect their lives and communities.
For further information on our health care and health promotion policies, visit our policies online:
http://www.greenparty.ca/en/policy/visiongreen/partfour#_Toc180047636
As mentioned, we do not have a policy on this issue at the present time. I would strongly suggest lobbying your local Green party candidate to make this an issue within the party. We will be holding our national policy convention towards the end of the year, and your input would be greatly valued.
With regards to our policies on child care, we are committed to providing universal access, which means not only increasing the number of spots available, but also the training available, including how to identify developmental delays. We also fully support the choice of parents to stay at home to care for their children, and would work to ensure they had the financial support required, specifically when the child's physical, mental or developmental health was the primary reason. Once again, we do not have a firm policy on the matter, but would urge you to address these concerns either to your local candidate, or to the Green Party directly, should you wish to attend the convention as a member.
I hope that I have been able to address some of your concerns regarding our policies on comprehensive health care, autism and child care. I apologize for not having more information for you at this time. Please do not hesitate to contact us if you have further questions, or feedback regarding the responses which I have provided you.
Once again, thank you very much for bringing your concerns to our attention. We hope to have your support in the election and in the future.
With warmest regards,
Kaitlin Wainwright, GPC
On Fri, Sep 19, 2008 at 10:15 AM, Michael Paskewitz
---------- Forwarded message ----------
From: Gideon Sheps
Date: Thu, Sep 18, 2008 at 12:55 PM
Subject: Does your party's definition of Universal Childcare include our children?
To: rfrei@votefrei.ca, leader@greenparty.ca
18 September 2008
Dear Ms Frei & Ms May,
I was please to see Universal Childcare included in your party's platform for the upcoming federal election.
However, I would like to ask you if your program's definition of "Universal" includes children with developmental disabilities such as Autism, Down Syndrome, Rett Syndrome, Asperger Syndrome, and Fragile-X.
These disorders are typically diagnosed in children between the ages of 1 and 3 - prime "day care years". These children cannot, in most cases, attend a typical day care. Some will be able to attend an integrated day care program where the staff have the necessary training, and the center has the funds to provide extra support and is willing to make the necessary accommodations in their program; others will not be suitable for integration and require intensive therapy programs.
Early Intervention is critical to children with developmental disabilities, and thus an attempt to define any child care program as "universal" clearly needs to take into consideration the approximately 1% of Canadian children who will be diagnosed with one of these disorders.
Will the Green Party's National Daycare Strategy address the needs of these children?
For the strategy to be truly universal I'd like you to consider the following additions to your plan:
- Mandate and include funding for the training of child care professionals in early identification of Autism and related disorders. It is often the case that the initial identification of Autism is made by day care or teaching staff. Since it is critical that children with these disorders are identified at the earliest possible moment day care staff (especially with universal access) are key players in these children's long term outcome.
- Include funding for the training of day care staff in IBI and other recognised therapy methods so that they can incorporate them into integrated day care settings and programs.
- Include funding for day cares that provide integration places to purchase additional equipment and materials as may be required.
- Include funding for parents or day cares to be able to hire "shadows" or have the child's existing therapist work with them in the day care environment when necessary.
- For families whose children cannot be integrated into a regular day care setting include funding that helps parents place their children in full-day approved treatment programs. That is, consider a treatment centre as a day-care equivalent, but at a compensation rate that recognises the higher cost of delivering therapy over standard day care.
- Where space in suitable centre based care is not available consider making your tax credits and/or direct payments to families more in line with the true cost of home based therapy programs.
Sincerely,
Gideon Sheps
Toronto, Ontario (York Centre Riding)
____________________________________________________
From: Facing Autism in New Brunswick:
Monday, September 22, 2008
Autism Position of the Liberal Party of Canada
The Liberal Party of Canada recognizes the challenges that autistic Canadians face, as well as those affected by autism. That is why we had invested $16.2 million in autism research grants, which funded 32 separate projects. Although the delivery of health care services falls under provincial and territorial jurisdiction, a Liberal government would be open to discussions with the provinces, territories and relevant stakeholders about considerations for those who are living with or affected by autism.
Although the delivery of health care services falls under provincial and territorial jurisdiction, a Liberal government would be open to discussions with the provinces, territories and relevant stakeholders about considerations for those who are living with or affected by autism."
The above information follows a backgrounder on autism and autism issues in Canada from the perspective of the Liberal Party of Canada. This information was provided by a Liberal Party staffer to a representative of an autism organization and appears to be the official Liberal Party position. It essentially offers dialogue but makes no commitments for federal funding of autism treatment. It is a very weak and disappointing statement from the party of Charlottetown MP Shawn Murphy, the author of private members Bill C-304, which sought amendment of the Canada Health Act to include ABA treatment for autism. Most Liberal MPs, including Stephane Dion, voted in support of that motion. Now they make no commitment except to talk in the future.
Meanwhile autistic children across Canada will be going without the effective treatment they need.
Vancouver Sun
Monday, September 22, 2008
Families forced to move to get autism therapy
Parents find help for children at specialized Kamloops centre
By David Hogben
Susie Braun and her husband Darwin thought they would be forced to move to Alberta to find therapy for their son Seth, who has autism.
They were readying to make the move from Richmond when they heard about the Chris Rose Therapy Centre for Autism in Kamloops.
Then, like a number of other families with autistic children, they chose to move, not to Alberta, but to the central B.C. Interior city.
"He needed occupational therapy. He was on the wait list forever," Susie Braun said of the two years her son waited unsuccessfully for treatment in his hometown of Richmond before the family moved in August 2004.
"In B.C., there is a drastic shortage of qualified people to work with [Seth]," Braun said.
Wanda Carisse, executive director at the Chris Rose Therapy Centre, says eight of 22 children currently being treated have moved to Kamloops specifically so they could attend the centre.
Children must live within the Kamloops school district to attend the centre -- named after a local principal -- as it is partly funded by the district.
"The primary reason we have so many children relocate is that we offer services for children after they enter school," Carisse said.
As children progress, they spend less time at the therapy centre and more time in regular classrooms.
Clair Schuman, with the Burnaby non-profit Autism Community Training, said many families with autistic children move outside of B.C. or to other parts of B.C. to find appropriate treatment for their children.
"It's a lot. It's a huge sacrifice for families," Schuman said.
Some families struggle year after year to find therapy for their children.
"It's almost a crapshoot from year to year," Schuman said.
Betty-Ann Garreck, of the Autism Parent Partners support group in Kamloops, said she is aware families have moved there to get therapy for their autistic children, but she warns them to check things out before they move.
She said parents with autistic children in Kamloops sometimes feel there are better programs for their children elsewhere.
For Susie Braun and her family, finding the Chris Rose Therapy Centre when her son Seth was approaching school age in 2004 helped them avoid a family disaster.
"All the services were accessible under one roof," she said.
She believes her son would have made little progress in a Richmond public school.
"He would have been entertainment for the other kids. He would have just been entertainment," Braun said.
Even when she could find services while living in Richmond, Braun said, programs were scattered around Metro Vancouver, which made them difficult to access.
Braun did find a daycare for Seth in Richmond, but it was not specifically for children with autism, nor did it have persons trained especially to deal with autistic children.
Julie Chambers, a part-owner of Insight Support Services Inc. in Kamloops, said about 20 per cent of the children attending Insight move from outside of Kamloops.
Chambers said Kamloops seems to be a tolerant community toward people with developmental disabilities, perhaps because many persons who were at the Tranquille Institution stayed in the Interior city after it closed in the mid-1980s.
Insight assists children with a variety of developmental problems, not just autism.
dhogben@vancouversun.com
_________________________
Special schools for special needs
Private schools offer intensive programs for children with learning disabilities
LAURA RAMSAY
Special to The Globe and Mail
September 22, 2008
When Frasier Beeny was in kindergarten, his teacher mom, Kelly MacDonald, quickly realized that he was struggling with the learning environment.
His teachers at a public elementary school in Markham, Ont., attributed his inability to repeat phrases from books, or to copy letters, to the fact that he was a December baby (meaning he was a bit younger than classmates), but his mother felt there were deeper problems.
Ms. MacDonald tried to home school Frasier in Grade 1, but remembers that after five days of "A-A-A, at the end of the week he still didn't even recognize the letter."
It's estimated that, like Frasier, about 10 per cent of school-age children in Canada experience learning difficulties that force them to struggle to focus their attention and keep up with the classroom.
Ms. MacDonald was determined to help her bright little boy, who "could play chess at age four and assemble things we'd bought at IKEA" but at age six still couldn't identify letters. She didn't want to wait for the school system to acknowledge his problems (Ontario public schools don't begin testing for learning disabilities until Grade 3), and worried that, in any case, the teachers weren't able to address them.
So she paid $1,500 for a private learning assessment; after being told that Frasier was "very bright in some areas and really bad in others," and feeling that there was no point in keeping him in public school doing hours of lessons he couldn't process, she looked to private schools for help.
She and Frasier, now 9, found it at the Arrowsmith School, an independent school for children with learning disabilities. Founded in Toronto in 1978 by Barbara Arrowsmith Young, it now has affiliates across Canada and the United States.
The Arrowsmith Program uses intensive therapy to correct cognitive difficulties; it uses targeted exercises to stimulate specific parts of the brain to teach it to overcome identified deficits.
Ms. Young says the program grew out of neuroscience, not education. Students do specific cognitive development skills for at least half their school day. Once they develop the necessary cognitive ability and are able to retain concepts, they work on catching up with curriculum.
About 60 pupils attending the flagship school in Toronto, paying about $19,000 a year for full-time studies. Most of the students have multiple learning disabilities and attend the school for an average of three years. By that time, most are able to return to a regular classroom without need of special-education assistance, Ms. Young says, although they may need to catch up with curriculum work.
It costs about $4,000 to train a teacher in the Arrowsmith Program, which Ms. Young would love to see offered in public schools. "It is very doable in the public system."
In fact, the program has been used by the Toronto Catholic School Board for the past 10 years to help pupils identified as learning disabled by Ontario's Identification, Placement and Review Committee process. (Students in the Catholic school system do not pay for the program.)
Ms. MacDonald says she was attracted to the idea that Arrowsmith School could correct Frasier's learning problems; it was "the only place I found that was doing anything other than compensating" for Frasier's learning difficulties.
Her concerns about children slipping unaided through the public system resonate with Angeline Sarabura, who founded the Gregory School for Exceptional Learning in Ancaster, Ont., seven years ago. Her son, now 13, is mildly intellectually disabled but did not qualify for an educational assistant in his public school, and the school refused her request to have him repeat Grade 1 despite not being academically ready for Grade 2.
Of the 18 pupils at the Gregory School, seven have autism and most of the others have developmental delays or learning disabilities. Its emphasis is on academics and uses two types of instruction not commonly used in public systems.
One is "discrete trial teaching intervention," the approach used in applied behavioural analysis (ABA) that is effective with autistic children. The other method is direct instruction, which uses a sequentially structured curriculum and scripted lessons. "A lot of public school teachers frown on this as a bad thing because they don't think they can be creative. But this works," Ms. Sarabura says.
Tuition runs about $17,700 annually at the Gregory School; pupils who require one-on-one assistance may pay up to $50,000 annually. Ms. Sarabura says parents are desperate for help. "Most of the parents here who have tried the regular system were frustrated by it. It's the parents who are seeking this out."
Ms. Young says parents often realize early on that something isn't right with their child and are less inclined than in the past to wait for the school system to confirm their fears before seeking help.
"We are getting a lot more students out of Grade 2 or 3, which is wonderful ... the earlier we can get the student the better," because the problems can be addressed before the child becomes demoralized.
In addition to the financial cost, many families make other sacrifices to send their special needs child to private school. Two families moved to Ancaster from Toronto so their children could attend the Gregory School, for example. In Frasier Beeny's case, Ms. MacDonald quit her job and the family (which includes Frasier's father and Frasier's younger brother) moved from Markham to Toronto to make it easier for him to attend Arrowsmith.
She says that after two years at Arrowsmith, Frasier has "morphed from a boy who was withdrawn and depressed" by his inability to keep up with his classmates "to a boy who has developed a sense of humour, who laughs all the time," a quality that will help to ease his return to a regular school next year.
********8
Nancy’s List
A group of parents, professionals and stakeholders attended a meeting on June 10th, 2008, at the invitation of the Benchmarks Panel, to provide feedback on the proposed Benchmarks System for determining eligibility for funding for IBI programs for children with autism. Many more parties were interested in attending this meeting than could attend, due to personal conflicts and / or the ability for the meeting to accommodate everyone who had an interest in attending.
A group of people that attended this meeting have composed the following document, and asked me to distribute it. I wish to thank all of those involved in the development of this document, they spent a lot of time providing this info for all of us. I hope all of you find this document useful.
And please feel free to forward this document to others you may feel are interested in the contents.
Regards,
Nancy Morrison
nancymorrison@rogers.com
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The Autism Intervention Program Benchmarks Panel Meeting
This report is a summary, along with supporting evidence, of the Autism Intervention Program Benchmarks Panel Meeting for Stakeholders. The meeting took place on June 10, 2008.
Before we get into the details from the event, below is a portion of Dr. Nancy Freeman’s (Clinical Director of TPAS and Chair of the Benchmarks Panel) letter that was sent to stakeholders and others a few days after the meeting:
“June 10 was a thought provoking day, as we heard a wide variety of opinions. We shared presentations from Dr. Peter Szatmari, chair of the Expert Clinical Panel, Dr. Tristram Smith, international expert and researcher in intensive behavioural intervention, and Ann Heesters, clinical ethicist with The Ottawa Hospital. At this meeting, parents, service providers, administrators, and direct funding providers provided feedback on the draft benchmarks that were presented for their consideration. We also received feedback on the inclusion of an ethical framework for the benchmark development process and affirmation of the importance of a review mechanism for clinical decisions based on the draft benchmarks.
The panel has considered all feedback seriously and intends to draw on the important issues raised by parents and other stakeholders to help us in finalizing clear, consistent, and effective benchmarks that will be used to monitor progress and facilitate clinical decision-making regarding the participation of children in Intensive Behavioural Intervention services.
One of the next steps for the panel will be a presentation of our work to the Ministry of Children and Youth Services (who have not seen the benchmarks yet) and the development of written reports to the Ministry and to stakeholders. The panel intends to write the reports this summer and hopes to have a report available for parents and other stakeholders as soon as possible after that time.
Following this, I understand that the Ministry will work with autism providers and others regarding implementation of the benchmarks, which were developed in response to the Clinical Practice Guidelines.”
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N.B. The following represents the recollection, notes and opinion of the authors only:
General Summary:
The meeting had a fair share of parents of children with ASD at all ages/stages. Some had children receiving funding and some had children who were on the waitlist (and had been there for quite some time). There were also many service providers and others.
The meeting was divided into presentations from panel members. Included in that were educational recommendations for children after the AIP, as well as hypothetical profiles of children in the AIP subject to the benchmarking process (see the section on Ethical Considerations below for more detail).
In the afternoon, we were divided into 3 groups to deal with certain questions and then we all met back to discuss present/discuss the answers.
We will outline some major issues about what was presented at this meeting. We were told that our feedback would be taken into consideration for the panel. We have confirmed that of September 15th, MCYS has not seen anything from this panel. In other words, there is no approval from MCYS for any of the Benchmark recommendations to be implemented as of today.
General Stakeholder Feedback/Reaction:
The part that was encouraging -- although I have no idea if the revisions will reflect this --is that the service providers and administrators who were there shared the same concerns and trepidations about the proposed systems as did the parents. In other words, there was not a contentious divide, as we have witnessed so many times, between the “hysterical” mothers present and the regional program personnel present.
1. Both parents and service providers, especially those in the north/more rural parts felt that this new system would require resources/personnel that they would not be able to have access to -- they are struggling as it is.
2. We shared the concern that it will be impossible to build either a good DSO or particularly a strong DFO team/program when staff face a fear of termination or starting with a new family every 6 months. (Under the proposed system, a child would be at risk of termination at six -month intervals.) Who would want to work under those circumstances and that kind of pressure?
3. There was concern that the benchmarks system is ignoring the clinically accepted fact the most children with autism display/possess splinter skills – they may be very strong in several domains and very weak in others (similar to what is found in the general population). This scheme requires children to be equally strong across all domains simultaneously and de facto punishes them for not developing across all domains at the same rate/pace.
4. There was also a big fear that service providers will just teach to the benchmarks (similar to the EQAO concerns) and not to the real needs of the child. In addition, there was concern that many of these benchmarks are irrelevant to many kids in a practical sense. The issue of consistency across the province was raised - how can all kids be judged to the same standard when some have more hours per week than others, there is no check/oversight on quality control of the programming, etc.
5. Everyone agreed that there must be a place for clinical discretion beyond any set of benchmarks. That being said, there was no system for appeal introduced for the families to utilize. Families continue to have no system of recourse under this scheme.
6. Everyone agreed as well that, if in fact a continuum of services were in place, along with properly trained personnel and was available, then all of this would be for naught. In other words, where are these children to go for best practice intervention and support once they are discharged?
7. Comparing children in the AIP with typical children, it was not disputed that “typical” children with learning disabilities/requiring resources would never be denied access to that intervention in typical school settings. Resources are made available, special classrooms and systems of withdrawal exist. Imagine parents of these children being told they cannot no longer have access to this and that in effect, their children are being dumped since despite the talk that their children can access other, equally effective supports, it was acknowledge by the stakeholders that none of that exists in the pipeline and very few are even trained to deliver what little there is, none of it evidence based.
Therefore, it was encouraging to hear service providers voice the same concerns and objections as parents. That is a significant finding from the day and since we have no idea if it will be reflected anywhere outside of this email so it is important that parents, therapists, teachers, etc. hear about this.
Areas of Concern:
The Benchmarks:
1. At the meeting, a draft Benchmarks Chart was provided for discussion purposes. It was explained that this document was in draft form only and just a quick guide -- the actual benchmarks will be more clearly defined in their submissions to the Ministry (as of September 15th, the Ministry has not seen a thing from this panel). All information had to be handed back at the end of the meeting, so what is outlined below is being recalled from notes taken and memory.
Benchmarks were tabled into 5 Steps. Each Step is a list of the skills to be reached in each successive 6- month period. The maximum funding would therefore be reached at the 30- month assessment. At each assessment a child could either be deemed as reaching required benchmarks and continue with funding, could be deemed completed Step 5 and graduated out as successful (regardless of length of time in the program), or not be successful at reaching the next level of benchmarks defined and funding ceased.
Assessments would be done at entry level to determine where within the 5- step benchmark chart the child is current functioning. At the original assessment, if a child is already at the functioning level of Step 5, the IBI program would be deemed not suitable for the child.
If a child meets the most advanced set of benchmarks, he/she will be “discharged for success” no matter how long that child has been receiving IBI.
Successive assessments would then be done at each 6 month interval, using resources such as Vineland, an appropriate language measure, the DSM criteria for Autism, ADOS or CARS. To continue with IBI funding, a child would have to reach 9 out of 12 or 12 out of 15 benchmarks for each level, depending on which stage of the five levels.
The skill categories are as follows: functional communication; receptive and expressive language; nonverbal cognitive skills; readiness; imitation; and social and play skills.
The very concerning thing isn’t the specifics of the benchmarks but the fact that no matter how you slice and dice these rules, the vast majority of kids will not get an evidence-based amount of therapy. To achieve Step 5, a child has to top out as a “best-outcomes kid”, because the steps are devised to anticipate the trajectory ONLY of best outcomes children. Therefore, only these children can achieve all of the benchmarks, and even then, only if they perform well on the day of assessment.
2. What this means is that only kids who start with NO skills will be eligible for 3 years. However, we know that because these children generally do less well, they will be discharged long before that. Kids who start with good skills get started at a higher step, and can therefore never receive more than, say 18-24 months, EVEN if they meet the benchmarks (and many won’t). In this way, kids with good skills don’t get evidence based therapy, and kids with poorer skills don’t get evidence based therapy.
3. Third, these Benchmarks are NOT evidence based. They have been manufactured by this panel. They have not been tested anywhere in the scientific literature for their validity. They were modified by this panel and the panel chair, Dr. Nancy Freeman from TPAS. The original source was a set of benchmarks used by a group in California (called “The Stockton Criteria”). We have no idea how these modification decisions were made since there has been no transparency in this process and no one, including the California group has provided ANY evidence that these criteria are clinically sensible, safe or fair.
4. Members of the stakeholders group cautioned the Benchmarks panel that results of blindly implementing these benchmarks could be disastrous and that any proposed benchmarks need to be tested prior to implementation.
5. The recommendation was made to use a “shadow benchmarks” system on children already in the program and seeing what would have happened to those children if the benchmarks had been applied. Doing this would allow the benchmarks panel to determine what percentage of children in the AIP would reasonably be expected to meet the benchmarks, and to determine whether the benchmarks are applicable, fair or relevant.
Specifically, this would tell the panel:
a) Would most kids pass?
b) Would most be discharged?
c) What percent would achieve best outcomes?
d) What would be the average duration of evidence-based therapy, duration and intensity over time?
Other questions remain unanswered:
a) What happens to children who are discharged? What follow up is in place to monitor this? What is the difference in trajectory for children who are discharged vs. children who continue in the program, including for those who would have been discharged according to the proposed benchmarks (but were not)?
b) Would a child be eligible for reinstatement in the AIP if the evidence shows regression post discharge? What are the mechanisms for such an assessment?
6. Regarding “The Stockton Criteria” the stakeholders learned that the panel sent out all kinds of surveys, made phone calls etc in 80 jurisdictions world wide. They told us that they found only ONE that used the type of benchmarks format that this panel is recommending. The stakeholders were not told about the content of those benchmarks. There were jurisdictions that used internal “benchmarks” – that is, they change programs according to how the child is progressing. Most of us would consider this “internal benchmark” system to just be good programming. This is very different than the “external” benchmarks being imposed, which is what the Panel has proposed.
7. The reality is that most of our children are not going to be “Best Outcome” but that doesn’t mean they are not making gains that will lead them to a more independent/integrated life where they can experience real accomplishments and contribute to society. (See below for more information on this from a study by Drs. Harris and Handelman.) The stakeholder groups’ presentations were consistent in expressing concern that children need to be measured against their own success. The point was raised that when the stock market value companies, the marketplace measures objective performance but also places great emphasis on how that company is doing vis a vis its own past performance in prior months and years.
Harris and Handleman Study Abstract and commentary:
Age and IQ at intake as predictors of placement for young children with autism: a four- to six-year follow-up.
Harris SL, Handleman JS.
Rutgers , the State University of New Jersey , Piscataway 08854-8085 , USA . sharris@rci.Rutgers.edu
The predictive power of age and IQ at time of admission to an intensive treatment program using applied behavior analysis was examined in a 4- to 6-year follow-up of educational placement. Twenty-seven children with autistic disorder who were between the ages of 31 and 65 months and had IQs on the Stanford Binet between 35 and 109 at time of admission to the Douglass Developmental Disabilities Center were followed up 4 to 6 years after they left the preschool. The results showed that having a higher IQ at intake (M = 78) and being of younger age (M = 42 months) were both predictive of being in a regular education class after discharge, whereas having a lower IQ (M = 46) and being older at intake (M = 54 months) were closely related to placement in a special education classroom. The results are interpreted as pointing to the need for very early intervention for children with Autistic Disorder.
It is also emphasized that older children and those with lower IQs in the present study showed measurable gains in IQ from treatment. The data should not be taken to suggest that children older than 4 years of age do not merit high quality treatment.
Here are some other points quoted from this abstract that are critical to the Benchmarks initiative:
"Children were given several weeks to adapt to being at the center and then were tested by a highly experienced examiner with another familiar adult in the room to help maintain the child's attention. Testing was done in short chunks to maximize the likelihood that the child was attending to the examiner during testing. These efforts appear to have enhanced the reliability of the test results."
Is this consistent with how children are being assessed for discharge or are they thrown into an unfamiliar clinical setting with people they don' t know and then expected to "perform" at their optimal capabiilty?
With respect to the lesser outcome group:
"That group had a mean IQ of 46 at entry and 59 at discharge. Their progress was not however sufficient to allow them to function effectively in a regular education class. By contrast, the group of children who went of to regular classess had a mean IQ of 78 at entry and 104 at discharge, showing a 26 point gain." That 13 point increase is not a trivial one (my italics).
This is a perfect example of the concerns around the IQ gains that the benchmarks panel wants to enact: kids in the AIP --who were accepted because of their severity -- are then expected to show gains consistent with kids who were higher functioning on entry -- a near impossiblity. For these children, does the benchmarks panel dismiss a 13 point gain as being inconsequential?
J Autism Dev Disord. 2000 Apr;30(2):137-42. Links
8. The benchmarks process is set up to allow only “best outcome” children to meet benchmarks. Because many of these children will start out as higher functioning, even they will be disadvantaged by starting out at something other than Step 1, hence reducing their maximum allowed therapy duration. By our calculation (using the program’s own data), less than 20-25% of children funded will fit this profile. This assumes that a number of optimal conditions are in place, including appropriate implementation of IBI.
Even when potentially good responders are admitted to IBI, any lack of progress may be due to IBI not being delivered as defined by Best Practices in the field. For example, there are several regional programs (Kinark, Erinoak) which provide only 20 hours to each child and rarely, if ever, does a child receive more than this level of intensity. (Under DSO, lost hours are never made up either.) Data from other studies suggest that several hours per week of therapy that are planned are never implemented. Thus, when 20 hours are planned, fewer are implemented. There is only one study that indicates that this level of treatment will produce significant gains, and the bulk of the other studies show a direct relationship between the number of hours of treatment and the size of a child’s gains. Moreover, according to the IBI guidelines, the number of IBI hours a child receives is a clinical decision.
A second example is that there are a number of sources that have stated that ABA programs should be supervised by a BCBA –Board Certified Behaviour Analyst. This is rarely occurring in Ontario and there are no expectations that current regional program supervisors obtain this credential.
9. Benchmarks are to be used at 6-month intervals and children are expected to meet 80% of them. Concerns raised by the stakeholders included: How is this data going to be obtained? How much more staff/administration is going to have to be hired to carry this out? How are families to build a high quality team of therapists and consultants when there is a risk of it all ending every six months? How is a child supposed to have real life program goal when there are benchmarks – that may have little or no relevance to that child’s life – to work toward surpassing every six months?
Ethical Considerations:
#1. Dr. Tristram Smith
Dr. Tristram Smith is a member of the Benchmarks Panel. The biography distributed at the meeting states:
“Over the past decade, I have made a number of visits to Ontario and other parts of Canada to give talks or consult to families and service providers on Intensive Behavioral Intervention. I appreciate being able to extend this experience by participating on the panel.”
It goes on to say:
“Dr. Tristram Smith is an associate professor of pediatrics at the University of Rochester Medical Center (URMC). His commitment to serving children with autism began in 1982, when he had the opportunity to volunteer as a buddy for an adult with autism who lived nearby his college. This experience led to an invitation to enter graduate school at UCLA, where he studied clinical psychology and worked as a therapist and researcher in UCLA Young Autism Project. After completing his doctoral and post doctoral work, he served on the psychology faculty at Drake University and Washington State University. He moved to URMC in 2000, where he is currently a behavior specialist in the school consultation program in the Strong Center for Developmental Disabilities.
Tristram is an investigator in a study in the Center for Studies to Advance Autism Research and Treatment at the University of Rochester, Principal Investigator of a study of parent training and medication for children with autism accompanied by symptoms of ADHD and Co-Principal Investigator of the Rochester site in the Autism Treatment Network. He has authored or co-authored a number of the most widely-cited studies on treatment outcomes for individuals with autism spectrum disorders.”
Dr. Smith appears to vet the draft recommendations of the benchmarks panel to date; some of these are in direct contradiction of his own published work.
I. Children not meeting benchmarks will be transitioned out. Interestingly, in the 1987 landmark Lovaas study (which included Dr. Tristram Smith) children who were not meeting milestones were actually giving MORE ABA hours in order to meet their goals/succeed.
II. Dr. Smith offered a presentation which was very concerning in its naive utopian view of life after IBI in Ontario. Dr. Smith is recommending ABA classrooms with a 6:1:1 ratio or an 8:1:1 ratio in terms of teacher and EA support. In addition, his slide recommended the ongoing need for a student to leave the classroom at regular intervals for continuing 1:1 intervention as needed. Those were optimistic recommendations – and while perhaps that trajectory is available in Rochester or Los Angeles, that landscape does not exist and does nowhere near exist in the Ontario education system for many years to come. Why didn’t the Benchmarks Panel inform him of this? It is one thing to recommend transitions from IBI to other evidence-based appropriate programs when the continuum, as he describes it, is an option, but we all know that after IBI, there is only the proverbial cliff... this was something that all stakeholders unanimously agreed to.
III. Dr. Smith’s ethical credibility or his judgement is in serious question as it relates to his acquiescence to the panel’s structure of the AIP program, in which no child will receive more than 3 years of IBI and most will receive far less (in fact Months 30 to 36 are considered a transitional /ramping down period).
Tristram Smith in his own paper said in the conclusions that some kids needed more than 3 years, and yet he stood up at the meeting and said that 3 years were the most needed. He has also acknowledged that many of the kids in the Lovaas original work received ABA for 10 years. This contradiction was brought to the attention of Ann Heesters, the Ethicist for the panel, at the end of the session.
“ In this study, advanced behaviors associated with friendship initiation and maintenance, social skills, understanding of social meaning and response to social behaviors were identified and treated, using the same discrete trial methodology as other behaviors, which consequently increased the duration of treatment beyond 3 years for many participants (usually for 2 additional years).”
-- Cohen, Amerine-Dickens and Smith (a “replication” study)
IV. He also misrepsented a study in his presentation to the stakeholders. He reported that this study that had 4 years of intervention only had 3 (and that the fourth year was an assessment year). This is NOT true – all four years were therapy years.
Here is a cut and paste of the abstract:
Intensive Behavioral Treatment for Children with Autism: Four-Year Outcome and Predictors
Glen O. Sallows and Tamlynn D. Graupner
Wisconsin Early Autism Project (Madison)
Abstract
Twenty-four children with autism were randomly assigned to a clinic-directed group, replicating the parameters of the early intensive behavoral treatment developed at UCLA, or to a parent-directed group that received intensive hours but less supervision by equally well-trained supervisors. Outcome after 4 years of treatment, including cognitive, language, adaptive, social and academic measures, was similar for both groups. After combining groups, we found that 48% of all children showed rapid learning, achieved average post-treatment scores, and at age 7, were succeeding in regular education classrooms. Treatment outcome was best predicted by pretreatment imitation,language, and social responsiveness. The results are consistent with those reported by Lovaas and colleagues (Lovaas, 1987; McEachin, Smith and Lovaas, 1993).
V. Moreover, here is what Tristram Smith’s data shows about less intensive ABA. We include this because many Regional Programs will not fund more than 20 hours per week regardless of clinical need (Kinark is the best example). Families in DSO have made it very clear for years that quite often those 20 hours are not delivered to the child and that lost hours are not allowed to be made up. (It is not known if Dr. Smith, in his “visits to Ontario” is up to speed regarding the average number of hours most children in the AIP are receiving but we hope that he would possess that knowledge when buying into how reasonable and realistic the benchmark process is. )
J Autism Dev Disord. 2006 Feb;36(2):211-24.
Effects of low-intensity behavioral treatment for children with autism and mental retardation.
Eldevik S, Eikeseth S, Jahr E, Smith T.
Akershusn University Hospital , Nordbyhagen , Norway . sigmund.eldevik@nordvoll.gs.oslo.no
We retrospectively compared 2 groups of children receiving either behavioral treatment (n = 13) or eclectic treatment (n = 15) for an average of 12 hours per week. Children were assessed on intelligence, language, adaptive functioning and maladaptive behavior at pretreatment and 2 years into treatment. The groups did not differ significantly at pretreatment. After 2 years of treatment, the behavioral group made larger gains than the eclectic group in most areas. However, gains were more modest than those reported in previous studies with children receiving more intensive behavioral treatment, and it is questionable whether they were clinically significant.
#2. Ann Heesters, Director of Ethics, the Ottawa Hospital:
Some of the stakeholders voiced concern over the issue of Conflict of Interest in the current and proposed model. Kinark is a prime example of this circumstance. Children in Kinark are uniformly given 20 hours of funding, regardless of clinical need and evidence from the scientific literature. This demonstrates that autism treatment professionals are making decisions based on efficiency and not on science or clinical profile of the child.
The model the Ethicist and panel are using to approve the panel’s work is called “A4R”. It is used often in health care resource allocation. Here is brief explanation of A4R:
“Limited resources mean that decision-makers must set priorities among competing opportunities. Programme budgeting and marginal analysis (PBMA) is an economic approach that focuses on optimizing benefits with available resources. Accountability for reasonableness (A4R) is an ethics approach that focuses on ensuring fair priority-setting processes. PBMA and A4R have been used separately to provide decision-makers with advice about how to set priorities within limited resources. “
Joint Centre for Bioethics, University of Toronto , 88 College Street, Toronto , Ontario M5G 1L4 , Canada .
The issue here is that A4R is intended to be a public approach in which priority setting is done by policymakers, not by clincal panels.
This approach only magnifies the blatant conflict of interest in the AIP –when clinical directors are allocating resources, making clinical decisions under budgetary and waitlist pressures; there is a clear ethical conflict that pervades this panel and the Regional Providers, some of whom sit on the panel.
#3: Profiles of Hypothetical Children under the proposed Benchmarks system:
There were presentations of profiles of children in the AIP under these new benchmark circumstances and they were troubling -- particularly where the presenter --Tracie Lindblad --gave an example of a child in an IBI scenario under the proposed benchmark system and talked about when the "clock starts ticking" for that child.
In that scenario, the child was done/ cut off by 4 yrs and 9 months of age... This is not just hypothetical; situations like this are already playing out in the community. We know is a case of a family in Hamilton right now where Dr. Jo Ann Reitzel is terminating IBI for the child. The child (and her twin sister with ASD) turned 5 in March and has had less than one year of IBI, much of it at a sub clinical level of hours per week. She was assessed at the same 6-month intervals that the benchmarks panel is recommending, despite the fact that there has been no approval of these benchmarks by the Ministry of Children and Youth Services. In fact, the ministry has not heard a thing from the panel. The unsanctioned adoption of these benchmarks was brought to Ministry attention in this past week.
Summary:
This document provides a detailed summary and commentary on the Stakeholder’s meeting for the Benchmarks Panel from June 10th. We urge you to contact this panel as well as your regional providers and MPPs to make your voice heard:
Benchmark Panel Members:
Dr. Nancy Freeman, TPAS nancy.freeman@surreyplace.ca
Dr. Peter Szatmari McMaster – szatmar@mcmaster.ca
Jo- Ann Reitzel, Clinical Dir, Hamilton Niagara – reitzel@hhsc.ca
Tracie Lindblad, SLP – tracie@cdco.com
Dr. Tristram Smith – University of Rochester, trsistram_smith@urmc.rochester.edu
Jennifer Dunn Geier – jdunngeier@cheo.on.ca
Adrienne Perry – perry@yorku.ca
Rob Brown – parent, Ottawa
Ann Heesters – ethicist, Ottawa Hospital
Parveen Grewal
Terry Whitehead
Minister Deb Matthews, MCYS dmatthews@liberal.ola.org
Minister Kathleen Wynne, Education kwynne.mpp@liberal.ola.org
To find your local MPP: http://www.ontla.on.ca/web/members/member_addresses.do?AddType=QP&locale=en
From a listmate
From:
http://www.autismsocietycanada.ca/newsletter/Action_Kit_2008_Election/Action_Kit_2008.htm
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Let Your MP Know Why a National Strategy for Autism is a Priority for You!
http://www.autismsocietycanada.ca/ http://www.autismsocietycanada.ca/
ASC Provincial and Territorial Societies
Equality Rights as Guaranteed under the Canadian Charter of Rights and Freedom
15. (1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.
Link to the Canadian Charter of Rights and Freedoms
Meet with your Member of Parliament and share your story; Go to Town Hall meetings; talk to the canvassers who visit door to door. Ask them what their plans are if they are elected.
Seize the opportunity
Election time is precisely the time when federally elected officials must uphold Canadians' fundamental rights as guaranteed to them in the Canadian Charter of Rights and Freedoms.
Let's seize this opportunity to speak in one united voice about our common issues:
Initiate national surveillance and reporting for autism, and set national standards for treatment and service delivery.
Increase funding to provide individualized treatment, services, resources and professional training required to support individual Canadians living with an ASD.
Increase targeted autism research in Canada.
"It is imperative that a National Strategy for Autism be a priority in this election platform."
Christine Dade - President of the Board of ASC
Let's make sure the needs of the Autism community are a priority in the 2008 Election.
Ask your MP today what he/she plans to do as your elected official in the Canadian Parliament.
Contact information
Autism Society Canada
Box 22017, 1670 Heron Road
Ottawa, Ontario K1V 0C2
Tel: (613-)789-8943
Toll free: 1-866-476-8440
www.autismsocietycanada.ca
Kathleen A. Provost, CFRE
Executive Director
kathleen@autismsocietycanada.ca ENSURE YOUR REGISTRATION
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Election Canada
Here are four easy steps to make sure the needs of the Autism community are a priority for the upcoming election.
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Be heard, before election day.
1) Find your Member of Parliament contact information using your Postal Code
MP contact information
2) Call and ask for a meeting
Ask for a 15 minute appointment with your MP. Request a face-to-face meeting where he/she can meet with you and your family and have a chance to understand your needs. Share your story.
3) Introduce your family members to your MP
There's no better way to help your MP understand the needs and the challenges of individuals living with an ASD, so meet with them face to face and talk to them. Tell your Member of Parliament your story.
4) Let us know how it went! Share your experience.
Let us know how it went! Contact Autism Society Canada through the link below. Let us share your successful story with others and inspire Canadians across the country to do the same.
kathleen@autismsocietycanada.ca
MP Etiquette: Getting the most out of your 15 minute meeting
1) Call the day before to confirm your appointment
2) Get there 15 minutes early
3) Expect your MP to be late, and to be pressed for time
4) Make your case and share your story - This is a family matter, go as a family.
5) Keep an eye on the time so that the MP has an opportunity to express opinions and commit to follow-up actions
6) Be persuasive, not argumentative
7) Stay on topic - focus:
- this is my story...;
- we need more resources for..;
- if elected, what do you plan to do?
Federal MPs and their role in Parliament
Link to Parliament of Canada website
What is ASD?
ASD Fact Sheet
link to ASC website
From a listmate
______________________________________________________
http://www.kvbc.com/Global/story.asp?S=9032257&nav=menu107_2
Autism bill introduced to Nevada state senate
Updated: Sep 18, 2008 10:43 AM EDT
Democrats in the Nevada state senate are behind a bill that will help families cover the costs that come with Autism.
A bill introduced Wednesday would require health insurance providers to cover Autism. It could be passed in the next legislative session.
This is good news for parents such as Carol Reitz, who lives in Northern Nevada. She spends $25,000 per year on Autism care for her son.
"I think it's a huge step forward in the right direction. Just the financial aspect of...everything you have to deal with, with Autism. I think it's going to be somewhat of a burden lifted for families that have to deal with this," says Carol
The executive director for the Autism Coalition of Nevada, Ralph Toddre, says, "Its a big step in ending insurance discrimination of people with Autism."
Toddre says some families are forced to pay up to $100,000 per year in Autism care.
Toddre is also the president of Sunbelt Communications, owner of KVBC News 3.
From a listmate
Hi Folks,
Last year we got a letter back Tony Clement (thanks Marie!) basically saying that the federal Conservatives see autism as a provincial issue so in essence they are passing the buck and not in favour of the Senate recommendation of a National Autism Strategy as described in the report “Pay Now or Pay later”. This argument is flawed in that many national strategies exist even though the issues fall under provincial jurisdiction (eg National Cancer Strategy – see below).
So if you get a chance please call/see your federal incumbent/candidate(s) and ask them what their stand is on voting for a National Autism Strategy. Get it in writing.
Thanks,
September 12, 2008 .
Autism Update
Special to “Access Now” – The Election Edition
By Andrew Kavchak
During this federal election campaign it is really important for all Canadians who are concerned with healthcare issues and the treatment of disabled people to reflect on the Conservative record over the past three years and to consider the lack of relevant Party platforms going forward. The Autism file provides plenty of food for thought and necessitates corresponding action.
Autism treatment is not available under Medicare in any province. The B.C. families in the “Auton” case claimed discrimination and won in the B.C. courts. However, the Province appealed and all provinces and the federal government intervened in the Supreme Court of Canada hearings to deny kids with autism access to treatment under Medicare, notwithstanding the Charter’s guarantee of equality. The SCC decided in November 2004 that the matter of whether to cover the core healthcare needs of Canadians with autism under Medicare is entirely up to the legislatures.
The autism community has been lobbying provincial governments for years to address this huge gap in healthcare. For years they have also been asking the federal government to recognize a crisis across the country, demonstrate some leadership, convene a meeting with the provinces, put some money from 11 consecutive years of budget surpluses on the table, and negotiate a National Autism Strategy that would see autism treatment provided under Medicare pursuant to some national standards. The federal government has also been asked (though the tabling of petitions, etc.) to amend the Canada Health Act to include autism treatment in Medicare so that the provinces could no longer discriminate against those with autism.
At the time of the SCC decision the Paul Martin Liberals were in power. The fact is that they did nothing for autism. During that time many Conservative MPs attended autism rallies and press conferences on the Hill and used the autism cause to criticise the Liberals. Local Ottawa opposition Conservative MP, Pierre Poilievre, even wrote an article in The Hill Times in which he clearly stated that the Canada Health Act should be amended to include autism treatment in Medicare. However, once in power, the Tory Health Minister, Tony Clement, began the first nine months of his tenure by sending parents like me useless letters telling us that he was sorry our kids suffered from autism, but that it was not his business and entirely a provincial matter. How could he write that right after an election in which the Tories campaigned on a National Cancer Strategy? How can the jurisdiction argument be relevant for one medical problem and not another?
However, on November 21, 2006 , just one day before a major autism rally on Parliament Hill, the Minister suddenly held a press conference and began by stating that “the autism situation is now so serious, that doing nothing is not an option”. Regrettably, that is exactly what he did. Clement announced a five-point autism plan that included a website, a symposium, and asking the Public Health Agency of Canada to consider whether they could maintain some surveillance of the autism situation. These measures are wholly inadequate and have accomplished nothing noteworthy.
Once in opposition, the Liberals suddenly saw the political value of using the autism file to score some points. Former Liberal Cabinet Minister Andy Scott tabled a Motion for the creation of a National Autism Strategy. The House of Commons passed Motion M-172 on December 5, 2006 . However, Motions are not binding and they have done nothing to implement it. Not one cent was assigned to it in any subsequent budget.
Similarly, Liberal Shawn Murphy tabled a Private Members’ Bill to create a National Autism Strategy. If passed, this would have become law and forced the government to actually do something. Regrettably, the Tories and the Bloc ganged up to kill Bill C-304 on February 21, 2007 before it even made it to the Committee stage for review after second reading. In a show of two-faced hypocrisy, Pierre Poilievre MP was among those who voted against the Bill, which would have done precisely what he previously publicly wrote should be done to help those with autism.
During this time, the Senate Standing Committee on Social Affairs was holding hearings into the question of funding for the treatment of autism. Senator Jim Munson has been a leading advocate for Canadians with autism on the Hill and this inquiry was thanks to his efforts. On March 29, 2007 the Committee issued its report titled “Pay Now or Pay Later” in which it recommended the creation of a National Autism Strategy. When Parliament resumed after the summer recess the autism community waited to see what would be the Government’s response. On October 17, 2007 Clement’s response was tabled in the Senate. In a nutshell, he completely ignored the recommendations of the committee. The reply did not even include the words “National Autism Strategy”. The Conservative government will not do anything for Canadians with autism and they do not see it as being their role to demonstrate any leadership with the powers and resources at their disposal to help improve the lives of Canadians with autism or to address the discrimination in Medicare.
The NDP have several MPs who are sensitive to the plight of Canadians with autism. In particular, Peter Stoffer MP has been one of our greatest advocates on Parliament Hill for years. Stoffer has tabled numerous Bills in the House of Commons. Regrettably, they have not made it to debate. Similarly, while the NDP have talked a lot about a disability rights statute, to my knowledge they have not tabled or publicly circulated any draft Bill on the issue so far.
In the U.S. the federal government recently passed the “Combating Autism Act” which poured $1 billion into autism detection, treatment and research. During his nomination acceptance speech, John McCain actually mentioned autism. In Canada , it is a different story as most politicians would rather adopt the ostrich approach to dealing with autism.
During this election, please ask the candidates in your riding whether they are prepared to commit to moving forward with the development and implementation of a meaningful National Autism Strategy that would finally see autism treatment covered by Medicare in every province and whether they would be prepared to resort to legislation ensure that it happens. Please ask them to put their position in writing. Then make their replies public and let everyone know where the candidates stand so voters can take it into account on election day. At least one autism organization has stated that it intends to be active in this election. If you want to contribute, contact Families for Early Autism Treatment (FEAT) of B.C. at www.featbc.org.
What happens to Canadians with disabilities is important. If the weakest and most vulnerable in our society can be manipulated, abused, abandoned and deprived of their equality rights, the strong and healthy should realize that it is just a matter of time before the same happens to them!
JANUARY 2007 NATIONAL CANCER STRATEGY
(JO’S WORDS HERE – THIS NATIOANL STRATEGY WAS UNVEILED BY HARPER – SO WHAT HAPPENED TO THE IDEA THAT HEALTH IS A PROVINCIAL JURISDICTION ARGUMENT?)
Author: James Rajotte, M.P. (Edmonton-Leduc)
Chair, House of Commons Standing Committee on Industry, Science, and Technology
Cancer is the biggest health challenge we currently face as Canadians. Over the next 30 years, between 5.2 million and 6.6 million Canadians will develop cancer. Cancer takes the lives of more people in Canada than strokes, respiratory disease, pneumonia, diabetes, liver diseases and HIV/AIDS combined.
Every family in Canada has had to deal with the negative and often tragic effects of cancer, including mine.
Unfortunately, Canada has fallen behind other developed countries in meeting this growing cancer challenge. A planned and deliberate organization of the limited human and economic resources needed to control cancer is urgently needed to respond.
In response, the Canadian government has just announced the establishment of the Canadian Partnership Against Cancer. The purpose of this not-for-profit corporation will be to implement the Canadian Strategy for Cancer Control, a five-year plan developed by more than 700 cancer survivors and experts.
This organization will serve as a clearing house for state-of-the-art information about preventing, diagnosing, and treating cancer. Its job is to make sure that the best cancer care practices in any single part of Canada are known and available to health care providers in every part of Canada . Experts are predicting the strategy could pre-empt 1.2 million new cases of cancer and prevent 423,000 cancer deaths over the next 30 years.
The Canadian Partnership Against Cancer will operate at arm’s length from government. Its board of directors will comprise representatives from cancer stakeholder organizations; the provinces and territories; patient, family and survivor groups; Canada ’s Aboriginal peoples; and the federal government.
The new body will be responsible for implementing the Canadian Strategy for Cancer Control, whose objectives are to reduce the number of new cases of cancer among Canadians, enhance the quality of life of those living with cancer, and lessen the likelihood of Canadians dying from cancer. Our government committed $260 million to this life-saving strategy in Budget 2006.
Jeffrey Lozon, the president and CEO of St. Michael’s Hospital in Toronto , will serve as the chair of the Canadian Partnership Against Cancer and Dr. Simon Sutcliffe, the president and CEO of the BC Cancer Agency, will serve as its vice chair.
If you would like more information about the Canadian Strategy for Cancer Control, please visit http://209.217.127.72/ or call (613) 941-2296.
And if you have any questions or comments for me, please do not hesitate to contact my office at www.jamesrajotte.com.
From A Listmate
Tuesday, September 16, 2008
TIMES COLONIST
Challenges for parents of disabled
Mary Fox, Times Colonist
As a parent of a disabled child, I found Ian Haysom's column on the joys of parenting "special kids" offensive because it failed to acknowledge the truly serious impact that this experience has on families (Sept. 13).
For example, autism spectrum disorders, which affect one in 150 children born in Canada, bring to parents challenges that can cripple even the most loving and devoted families. Eighty per cent of couples who give birth to a child on the autism spectrum end up divorced. Families, and often single mothers, go bankrupt trying to fund behavioral therapy and other interventions, the cost of which is only modestly supported by the provincial government.
It is very hard to hold a job and provide for the needs of a child with a disability. That too provides further economic hardship.
You do find joy in your child but it is coupled with the heartbreak of constantly battling the education system and more particularly teachers who just cannot come to grips with the impact that disability has on academic performance.
My family ended up travelling to Italy, to use the analogy in Haysom's column, and when we arrived we discovered we had lost our credit cards, cash and hotel reservations. We don't speak the language so we've had a hard time explaining what's happened and everyone's having such a good time in Italy that they don't seem particularly concerned. We'd love to go to Holland. Apparently it's "a very magical, wondrous place."
Mary Fox
Victoria
********
Nancy’s List
Federal Leaders Debate:
If you are like me, and many others, you may be realizing that autism is not being mentioned in this federal election much thus far and we all need to work hard to ensure it becomes a topic of debate.
I copy this from a listmates message sent out to all their contacts:
The public has been invited to submit questions to the leader's debates. Below is the question I sent in.
The more people ask about Autism the more likely it is that one of the questions submitted will be asked.
Please take a few minutes to write your own question and send it to the networks at question@electiondebate08.ca
Regardless of how they answer, just getting a question like this asked in the federal debate would be a major step forward.
Even if it's just a simple one line question, the more the networks hear about it the more they are likely to see this as an issue of interest.
Also, some listmates have shared their questions, and I am going to share some of them here to help everyone get their creative writing skills flowing:
Sample 1:
One of the fundamental drivers of much federal policy, and certainly much debate, has to do with ensuring that Canadians get equal access to essential services of similar quality no matter where they live. The Canada Health Act is one such piece of legislation that, along with federal transfer payments, is supposed to help guarantee this fairness in many areas of our life from coast to coast to coast.
1 in 160 children born today in Canada will be diagnosed with Autism. At present, although poorly understood, there are some proven effective therapies; but they cost more than the average 2-income family earns in a year*
Depending on where you live, however, access to these therapies varies wildly. In many parts of the country children with autism languish on waiting lists during the most critical years of their life; some face arbitrary limits on how long they can receive therapy; some provinces provide almost nothing, and some are lucky enough to live in a province that provides significant funding.
According to the Canadian Senate Report, "Pay Now or Pay Later - Autism Families in Crisis" full funding for autism treatment will save the Canadian taxpayer billions of dollars over the long term.
Autism isn't just a health matter, nor is it just an education matter. Autism impacts every aspect of the life of the affected person and their family - Autism doesn't neatly fit into a provincial or federal jurisdiction. As such...
Will your government establish a national policy on Autism, and create a national framework to ensure equal treatment and access to services regardless of where you happen to live in this country?
Regards,
Sample 2:
As a grandfather of a 5 year old autistic grandson, I would like the following questions asked so that all the party leaders can give their committment to autistic children.
XXXXXXXXX has been in the IBI Treatment in XXXXXXX Ontario for over 2 years and it is amazing how he has been drawn out of his shell and verbally/physically interacting with others.
• If elected will your party impliment the recommendations of the Senate's report of March 29th, 2007 titled "Pay Now or Pay Later" which recommended the creation of a National Autism Strategy???
• WHEN???
During the last election campaign several MPs used the autism cause to criticised other parties.
After the election several families received useless letters from the Minister saying that he was sorry our kids suffered from autism, but that it was not his business and entirely a provincial matter.
• If a child had cancer, diabetes or needed a wheel chair, we know that the Federal Government would do whatever is needed to give the child the appropiate treatment.
The House of Commons has passed Motion M-172 on December 5, 2006 and "Not one cent" has been asigned to it in any subsequent budget.
C-304 Bill was killed with a gang up of 2 parties on February 21, 2007
In the U.S. the Federal Government recently passed the "Combating Autism Act" which poured $ 1 billion into autism detection, treatment and research. During his nomination speach, John McCain actually mentioned autism. I have not heard any of the leaders in Canada mention it, it appears that our politicians want to use the ostrich approach to deal with autism.
• What will Canada do with these children in 20 years if they are not provided with the proper detection, treatment.
• Is it that autism is not very visible and most people do not understand it very well, that the Federal Government has burried their heads in the ground and said that it is a Provincial problem and not a Federal problem?
• Are these children with Autism not Canadian Citizens and do they all NOT deserve the same treatment as all Canadians.
• Do parents/families have to continue moving to other Provinces/Countries to receive the best possible treatment for their autistic children.
Please ask the party leaders the top 2 questions and hand them a copy of my email.
From there I am asking each of them to respond to me in writing, to all my questions.
I thank you for this opportunity to question the leaders on behalf of all the children with autism on the waiting lists and the future children that will be diagnosed in the future.
We are very fortunate that our grandson was able to get into the IBI treatment that he needed and desrerved as a Canadian child. There are many other children that need and deserve the same treatment.
Canada tried the "Attic Children" thing many years ago and that did not work, now we are in the "Pay Later" phase of their lives.
Thank you
Sample 3:
As parents of a child with autism, our focus is very much on health care and what this means for our child. This is a a concern shared by families in every province, especially as autism is on the increase and one out of every 150 children are now diagnosed with some form of autism.
Medicare is not available for autism treatment anywhere in Canada despite a government run health plan that is supposedly universal. It is unacceptable that children with physical disabilities have access to government health insurance coverage, yet children with a mental or neurological disability do not share in this important social safety net benefit. This is the case in every province in Canada. Our question to each of the Leaders is as follows:
"If your Party forms the next Government, will you publicly commit to supporting legislation which will amend the Canada Health Act to include autism treatment under Medicare?"
Thank you.
---------------------
And a message from the advocates coordinating the federal election advocacy :
This is an extremely important initiative, not only for Canadians with autism but for all of us. Please support the effort financially and email this message to family, friends, neighbours and work colleagues with the request that they do the same.
________________________________________
Medicare for Autism Now!
Dear Friends,
As you know, it is federal election time in Canada , and a critical time for our campaign for Medicare for Autism Now!
We are a national coalition of non-partisan parents, advocates and professionals seeking medicare coverage for effective, science-based autism treatment otherwise known as ABA (applied behaviour analysis).
Over 40 years of research and litigation have identified this treatment as medically necessary. It is the only core health need not included in health care, therefore costing thousands of Canadian families up to $80 thousand dollars a year each to access the only effective treatment for their children.
The Medicare for Autism Now! National campaign launched in March, 2008. Our non- partisan campaign is focused on creating policy change to make ABA/IBI treatment available for all Canadians diagnosed with autism.
During the current federal election we are supporting candidates in specific constituencies across Canada, regardless of party affiliation, who will publicly commit to supporting legislation which will amend the Canada Health Act to include autism treatment under Medicare, thereby ending the discrimination against some of the most vulnerable Canadians.
Please support this crucial campaign now with a financial donation:
Make cheques payable to:
Medicare for Autism Now Society
Suite 425-1489 Marine Drive
West Vancouver, BC
V7T 1B8
Donate Online! Secure, quick and easy.
www.medicareforautismnow.org
(click on the “Donate” button)
Please check the website on a regular basis during the election campaign for important information.
THANK YOU for your support
---------------------
I sent this message out near the end of school year, but felt it needed to be shared again, especially as we face the new school year challenges, and also in the areas where families are being cut off of funding for their older kids to clear the waiting list for younger kids.
Hi all,
The Ombudsman of Ontario, who's responsible for investigating
complaints against provincial government organizations, is currently
soliciting information from families dealing with autism about their
experiences accessing IBI therapy. He's collecting information over
the next couple of weeks, so this is an ideal opportunity to make your
voice heard and to help create some momentum to possibly trigger a
formal investigation into the delays in timely and equitable health
care and education for children with autism. For those receiving this
message who work with families with autism, it would be greatly
appreciated if you could forward this important information onto them.
The Ombudsman has put forth the following three questions to families
with autism, and answers can be e-mailed to info@ombudsman.on.ca.
1) Is your child on the IBI waitlist and if so, how long? (eg: "My
child has been on the waitlist since May 2006", or "My child is
currently receiving IBI but was on the waitlist for 3 years", etc.)
2) Is your child having to receive IBI outside of school and if so,
why? (eg: "My child is receiving IBI outside of school because
although I have asked if my child can attend for at least part of the
school day with direct support from his/her IBI Instructor Therapist,
the school has not allowed this", or "My child is receiving IBI
outside of school because he/she is only 3 years old", etc.)
3) Has your child been discharged from IBI and why? (eg: "My child was
receiving IBI but was cut-off when he/she turned age six when the age
stipulation was still in place and now he's/she's back on the waitlist
again", or "My child was cut-off of IBI in September 2007 because they
said that he/she is not progressing enough", etc.)
--------------------
I pulled this info from another list from the US:
For IMMEDIATE RELEASE: Contact:
PRESS RELEASE Polly Tommey, Editor-in-Chief, Polly@autismfile.com
September 12, 2008 Teri Arranga, Editor, US and Canada, Teri@autismfile.com
Chantal Sicile-Kira, Marketing Director, Chantal@autismfile.com
Jonathan Tommey, Advertising Director, Jon@autismfile.com
The Autism File: International Autism Magazine Now Available in Bookstores in US & Canada
A North American edition of The Autism File, the longest running international autism magazine, has been released for distribution to 2000 bookstores in the United States and Canada. The Autism File, published in the UK for over 10 years, is also available in Spain (in Spanish) and Australia. The Autism File's Scientific and Editorial Advisory Boards are made up of leading autism experts and advocates from around the world.
Bookstores that are stocking The Autism File in the US include many Barnes & Noble, Borders, Books a Million, Universal News in New York and bookstores at four major airports: JFK, Newark, Chicago and San Francisco. Distribution varies by region. In Canada, stores carrying The Autism File will include Chapters, Coles, Indigo, and Presse Commerce and will be on the shelves for a three month period with an initial two week promotion.
Here is what readers are saying:
“I just received a copy of The Autism File U.S.A…. I must say Wow! Wow! and Wow!" commented Jonathan Alderson, EdM, an autism treatment specialist. “The magazine is just packed full of top quality articles and great information from well-known researchers and practitioners in the field.”
“What impresses me so much is the content. Simple, clean, impactful. It's a tough one to put down once it's opened,” wrote Lori Mcllwain, co-founder and Vice-Chairperson of the Board of the National Autism Association.
Teri Arranga, Director of Autism One, is The Autism File's Editor for the US and Canada. Teri works closely with Polly Tommey, Editor-in-Chief, who founded the The Autism File with her husband, nutritionist Jon Tommey, over ten years ago. “The journal covers the many diverse aspects of autism from childhood through adulthood, including biomedical issues, educational interventions and therapies, advocacy and practical advice for daily life, in order to help children and families touched by autism worldwide,” Polly explained.
The Autism File debuts in the US and Canada with articles from autism experts such as Dr. Stephen Edelson, Dr. Elizabeth Mumper, and Dr. Harry Schneider. A panel of scientific experts including Dr. Kenneth Bock, Dr. Dan Rossignol and Dr. Amy Yasko will reply to questions in their column “The Doctor is IN,” (Askthedoctor@autismfile.com). Practical advice is offered by award-winning author Chantal Sicile-Kira in the “Ask Chantal” column. Articles by people on the spectrum, such as Dr. Stephen Shore and Dean Beadle, are featured in every issue.
For more information or to subscribe, please visit www.autismfile.com
--------------
Attached to this e-mail is a flyer for a Sensory Tools for School Conference being held in Toronto.
-------------
And this info I pulled off another list for all the GTA listies;
Local DAN! practitioner is holding a clinic for new and existing
patients in November. Now is the time if you have been thinking
about trying the DAN! approach.
Outreach Clinic
For Children (& Adults) With Autism, AD(H)D and Behaviour Disorders
November 15 & 16, 2008
(Saturday & Sunday 8:30am - 6:00pm by appointment only)
Touchstone Naturopathic Center
950 Southdown Road, Unit B5
Mississauga, Ontario L5J 2Y4
Scott Clack, B.Sc., N.D. will be seeing patients on Saturday &
Sunday from 8:30am to 6:00pm by appointment only. Our goal is to
improve the health and well being of individuals using integrative
medicine, in particular, biomedical treatment options. Specialized
testing, not available at traditional labs, will be offered. These
tests are designed to determine abnormalities associated with heavy
metal toxins, intestinal pathogens, food allergies, immune
deficiencies, nutritional imbalances and more.
Scott Clack, B.Sc., N.D. received his Bachelor of Science (Honours)
from the University of Toronto (Mississauga) in 1981, and his
Doctorate of Naturopathic Medicine from Bastyr University in
Seattle in 1997. He practiced in B.C. for 2 years after graduation,
and moved home to Ontario in 1999.
Scott Clack has been specializing in the treatment of Autism
Spectrum Disorders ("ASD") for more than six years. In working with
these families, he has researched and implemented many treatments
that are recommended by Defeat Autism Now! His formal training in
treating ASD patients includes Open Windows (Toronto) training with
Dr's Bradstreet and Kartzinel in 2003, Open Windows (Toronto) with
Dr. Bradstreet and Elaine Gotschall, Toronto mini- Defeat Autism
Now! 2005 Physician's training, Great Plains Biomedical Physician
conference in Orlando in 2006, the Defeat Autism Now! conference in
April 2006 and the Great Plains Physician Training conference in
March, 2007. In addition, Scott Clack was voted Naturopathic Doctor
of the year in 2005 by his Ontario peers. He has treated over 200
patients with Autism Spectrum Disorders and is one of the lead
physicians involved in the Great Plains practitioner mentoring
program in Canada.
(For Driving Directions please visit www.Touchstonecentr e.com)
Please contact Chasity Robinson or Bryan Olson if you have any
questions and/or to schedule appointments at 1-913-341-8949.
-------------------------------
And another resource for GTA'ers:
NEW GF/CF FOOD STORE OPENS IN MARKHAM
PATH FOODS: Gluten free. Casein free. Worry free
Help is on the way! Path Foods is here!
Path Foods is the first store designed specifically to help families with Gluten free and Casein free diets. We take the worry out of shopping and aim to save you both time and money while featuring foods your family will actually eat!
We stock a variety of GF/CF foods that will work for your diet at prices better than you'll find with other retail or mail order options. More importantly, we fact check every item. No more trying to decode food labels. No more guessing what is ok and what isn't. We will provide a hands-on approach to find foods for even picky eaters.
There’s no need to be driving all over the city trying to find elusive foods that may be out of stock- wasting your time and money - everything you need is now in one place.
Whether you have just started a Gluten free and Casein free diet, are curious about it or if you are already on it and are simply looking for some more food options, Path foods is the place you’ve been waiting for!
Our website (www.pathfoods.ca) will be up in a few weeks, but in the meantime we can be reached at pathfoods@gmail.com or 416-508-7568. We would be happy to discuss your food requirements with you and we can email you our product/price list.
My goal is to help you, so please let me know what I can do for you!
Georgia Smith
Path Foods
----------------------------
In Today’s Parent magazine, Oct 2008, there is monthly section called “Heroes”, and readers can send in their nomination.
Brigitte Pelosi – Autism Advocate is the Hero, for October.
Her winning nomination is on page 34, and 35.
Congratulations to Brigitte, for helping so many families!
----------------
A letter to the Editor from Victoria, BC:
Tuesday, September 16, 2008
TIMES COLONIST
Challenges for parents of disabled
Mary Fox, Times Colonist
As a parent of a disabled child, I found Ian Haysom's column on the joys of parenting "special kids" offensive because it failed to acknowledge the truly serious impact that this experience has on families (Sept. 13).
For example, autism spectrum disorders, which affect one in 150 children born in Canada, bring to parents challenges that can cripple even the most loving and devoted families. Eighty per cent of couples who give birth to a child on the autism spectrum end up divorced. Families, and often single mothers, go bankrupt trying to fund behavioral therapy and other interventions, the cost of which is only modestly supported by the provincial government.
It is very hard to hold a job and provide for the needs of a child with a disability. That too provides further economic hardship.
You do find joy in your child but it is coupled with the heartbreak of constantly battling the education system and more particularly teachers who just cannot come to grips with the impact that disability has on academic performance.
My family ended up travelling to Italy, to use the analogy in Haysom's column, and when we arrived we discovered we had lost our credit cards, cash and hotel reservations. We don't speak the language so we've had a hard time explaining what's happened and everyone's having such a good time in Italy that they don't seem particularly concerned. We'd love to go to Holland. Apparently it's "a very magical, wondrous place."
Mary Fox
Victoria
------------------
As a follow up from the last mailing, the Hamilton Spectator provided more coverage on the story about the boy who couldn't get a bus to school:
School bus finally picks up autistic boy
September 10, 2008
THE HAMILTON SPECTATOR
(Sep 10, 2008)
Joey Van Dyk, the 13-year-old autistic child left stranded by his school bus for the first five days of school, was picked up for school yesterday morning.
"I'm ecstatic," said his mother Danielle Van Dyk.
She made repeated calls last week to complain about Joey's missing bus to the principal at George L. Armstrong school on Concession Street and the Hamilton-Wentworth District School Board, all but one of which went unanswered.
Van Dyk and her husband both work in the early morning and can't drive Joey to school.
Darryl Sage, manager of accommodation and planning at the school board, blamed the problem on the huge volume of transportation complaints the board receives this time of year.
Van Dyk called Sage's comments "a cop-out."
"There is no excuse," she said, adding Joey did well at school yesterday and was looking forward to taking the bus again.
End of mailing
