October 6th – October 17th , 2008
Alliance for families with autism
Visit
www.autismnewsarticles.blogspot.com
to read archived mail
From a listmate!
Join us on Saturday Nov. 8th for our annual conference at York University in Toronto. The conference is a gereat place for parents, school staff and board staff to meet, make new connections, learn a lot, raise issues and find solutions.
The Minister of Education, Kathleen Wynne, will be addressing the audience, and there are wonderful speakers and a wide variety of panel discussions and workshops to choose from. The cost for the day is $50.00 including lunch and a post-conference reception. Please register in advance as we are filling up quickly. For more information or to register email jan@peopleforeducation.com
Keynote speaker: Dr. Michael Tymchak, Dean of Education, University of Regina, and chair of the SchoolPlus task force, a program that is transforming Saskatchewan schools.
Panel discussions and workshops include:
• Do marks really matter?
• All-day kindergarten: do we need it? What will it look like?
• School accommodation reviews: a survival guide
• School council challenges
• The Balanced Day: what is it and how is it working?
• Schools at the centre of their communities
• Special education: the challenges of integration
• Tackling urban diversity
• What the heck is DPA and how do we get our kids more active?
• e-learning - the pros, the cons, and new advances
• The changing role of principals
• Parent Involvement Committees: making PICs really work for parents
Session participants include:
Cassie Bell, Inner City Advisory Committee Co-ordinator, Toronto DSB
Jan Coomber, former secondary principal, Peel District Board of Education
James Côté, Department of Sociology, University of Western Ontario
Jennifer Cowie Bonne, Ontario Physical & Health Education Association
David Clegg, President, Elementary Teachers' Federation of Ontario
Janine Dunlop, Ministries of Culture, & Health Promotion, PLAY Bruce Grey
Sharon Friesen, Faculty of Education, University of Calgary
Michael Fullan, Special Advisor to the Premier and Education Minister
John Hoffman, Writer, Today's Parent, & parent, Kawartha-Pine Ridge DSB
Kevin Larson, Co-author of a new draft PIC policy for the Bluewater DSB
Cyndie Jacobs, Director, Curriculum & Assessment, Ontario Teachers' Fed.
Joanne MacEwan, Chair, Ottawa-Carleton Catholic School Parents Assn.
Jenny Robinson, Executive Director, Ontario Coalition for Better Child Care
Farooq Shabbar, Principal, John McCrae P.S., York Region DSB
Sheila Stewart, Lakehead Council of School Council Chairs
Wanda Percival, Parent Engagement Office, Ministry of Education
Trisha Woehrle, Researcher, Hamilton-Wentworth DSB
and the Honourable Kathleen Wynne, the Ontario Minister of
Education, will address the conference
To Whom It May Concern:
The Interdisciplinary Council on Developmental and Learning Disorders 12th Annual Conference takes place November 7th through the 9th at the Tyson's Corner Hilton Hotel in Mclean, Virginia. The conference has a variety of sessions running from 8:00AM to 5:30PM Friday to Sunday.The following press release provides the event details. Please distribute this press release to your audience members.
If you have any further questions please contact Cecilia Breinbauer, MD, MPH at cbreinbauer@icdl.com or 240-350-6907.
Media Advisory
Experts to Gather in Tyson’s Corner, VA to Share Insights on the Potential for Emotional and Social Functioning in Children with Autism and Special Needs
12th Annual Conference of the Interdisciplinary Council on Developmental and Learning Disorders to be held Nov. 7-9
Tyson’s Corner, Virginia, Nov. 7, 2008 – Leading experts on Autism Spectrum Disorders (ASD) and child development will discuss new advances in the identification, treatment, education, and family dynamics of autism and associated disorders, at the Interdisciplinary Council on Developmental and Learning Disorders’ (ICDL) 12th Annual Conference on Nov. 7–9 in Tyson’s Corner, Virginia, outside Washington, D.C.
Speakers at the 12th Annual Conference will include internationally renowned experts, including child psychiatrist Stanley Greenspan, pediatrician T. Berry Brazelton, bioethicist Glenn McGee, and over 50 other researchers and clinicians in the areas of neuroscience, pediatric medicine, developmental psychology, mental health, communication and language development.
The conference, titled “Redefining the Potential for Emotional and Social Functioning in Children with Autism and Special Needs,” will include panel discussions on a wide range of issues presented in 13 plenary sessions and 33 concurrent seminars. Plenary sessions include:
• New Research on Social and Emotional Gains and Changes in Brain Functioning in Children with Autism and Special Needs
• New Insights into identifying and Treating Medical Conditions Associated with ASD
• A Bioethical Approach to Overcoming Problems with Behavior and Aggression in Education of Children with ASD
As in past years, ICDL will offer pre-conference workshops on Thursday, November 6th, on Sensory Organization, Representing Cognition in DIR®, Floortime™ for Novice Players, The Affect-Based Language Curriculum (ABLC), The DIR® and IEP Goal Bank, Communication Through the DIR® Lens: A Toolkit of Ideas and Strategies, Medication in the Treatment of Developmental and Learning Disorders, DIR® Programs for Preschool and Elementary Age Children, and Using the DIR® Approach in Feeding Therapy.
Hundred of professionals and parents are currently registered to attend the conference, and spaces are still available. To view the full brochure or register, visit www.icdl.com.
The conference takes place amid growing concern about the increase in autism and related disorders in recent years. The Centers for Disease Control and Prevention (CDC) now estimates that 1 in 150 children in the United States have autism, a much higher rate than previously reported. Nearly 17 percent of U.S. children are diagnosed with developmental challenges that require early identification and preventive interventions, yet fewer than half are identified as having a problem before starting school. A new framework developed by the CDC and ICDL is aimed at identifying children at risk and facilitating early intervention and treatment, and will be presented at the conference.
ICDL is a nonprofit organization dedicated to improving the prevention, assessment, diagnosis, and treatment of emotional and developmental disorders in infancy and childhood by promoting dialogue and integrating knowledge form different disciplines. For more information, please visit www.icdl.com.
Best Regards,
Natasha Labbe
Web Master & e-Marketing Associate
Interdisciplinary Council on Developmental and Learning Disorders
www.icdl.com
nlabbe@icdl.com
From Nancy’s List
Request for everyone to write to the Ministers regarding the Benchmarks Panel Report:
In the past few weeks, we have seen a lot of material posted about the Benchmarks Panel, the Panel's Report as submitted to Ministry staff and from a group of people that attended the Stakeholders Meeting last June. I have shared this info all together this week under a separate mailing sent on Wednesday, Oct 15th.
Many advocates are working on organizing events / strategies / actions, etc. I will do my best to advise through this e-mail list, and ask that any other resource list shares info on addresses and ideas on how to mobilize. If you have any ideas, input, strategies, resources, etc regarding advocating in this area, please share!!! Together we can make a loud and clear message ring out.
For now, the most important thing that everyone needs to do is write to Minister Matthews and Minister Wynne about your concerns about the proposed Benchmarks, about your concerns on where the schools fail in picking up where their proposed IBI benchmarks will end funding for our children, your interpretations on ethics, budgets, vulnerable members of our society being taken care of, comparisons with other nations in autism services and funding for all ages, etc, etc, etc. We need to make sure the Ministers and their staff receive letters from everywhere, giving them all the reasons why this system is discriminatory, barbaric, archaic, harmful to your child, etc, etc, etc. Put your thoughts and feelings in writing, no matter how short or long a message, whatever you have to say is a valuable addition to the messages being sent in collectively. Don't be shy on writing skills, grammar, vocabulary, just put your thoughts in writing and send it. Send it e-mail, send it snail mail, just make sure you send something.
Remember, the Ministers staff and advisors are reviewing this report at this time, we need to help them realize why this cannot be put in place.
Here are the Ministers contact info:
Ministry of Education
Kathleen Wynne, Minister of Education
Mowat Block
22nd Flr
900 Bay Street
Toronto, Ontario
M7A 1L2
tel: 416-325-2600
fax: 416-325-2608
kwynne.mpp@liberal.ola.org
Ministry of Children and Youth Services (MCYS)
Deb Matthews, Minister of Children and Youth Services
14th Flr
56 Wellesley Street West
Toronto, Ontario M5S 2S3
tel: 416-212-7432
fax: 416-212-7431
dmatthews@liberal.ola.org
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This from NDP MPP Andrea Horwath's office:
October 17, 2008
Horwath wants spotlight kept on autism
Queen’s Park – World Autism Awareness Month should be officially recognized annually in the Ontario Legislature, Hamilton Centre MPP Andrea Horwath believes.
Ontario’s NDP Critic for Children and Youth presented a motion calling for a special focus every year in October to acknowledge autism and press for better services for children with autism.
“This is such an important issue to the families,” said Horwath. “The more opportunities we can create to keep the subject of autism in the spotlight the better. There’s a long way to go before families dealing with autism have equality of education and treatment for the children affected. Until the government delivers a comprehensive funding program for autism services, there continues to be a need to give special attention to the subject as often as possible.”
Horwath encouraged supporters to back Resolution 54 in letters to Premier Dalton McGuinty and Minister of Children and Youth Services, Deb Matthews.
“Legislative measures such as resolutions and petitions help carry forward the rallying cry,” Horwath said.
The MPP says she is troubled by increasing numbers of children who can’t obtain autism treatment, are cut off treatment too early, can’t be accommodated in school or are denied treatment after waiting more than two years.
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Media Inquiries: Sheila White (416) 325-2777 or (416) 902-0977
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Don't forget the Geneva Centre for Autism Annual Conference coming up later this month, Oct 22 to 24th. Here is a link for the conference outline and description of each session:
http://www.softconference.com/gca/slist.asp?C=1817#TID7366
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Lindsay Moir's column, although not autism specific but very applicable to our kids needs in school:
Ask Lindsay Moir:
Parents unaware of cuts to Educational Assistants
Friday, October 17, 2008
Question:
We have just gone through a rather strange series of events regarding our son who has cerebral palsy and attends our local Catholic elementary school. He has no academic issues, but significant physical needs and the board and the school have always been supportive and for the past two years he has a RNA-trained Educational Assistant who has been terrific in responding to these needs.
Last week we received a very formal letter saying that a grievance had been filed by the EA stating she could not meet his needs and that her work refusal had created an unsafe environment and that we needed to keep our son home until this matter was resolved!
The principal said she was working on it, but in the interim keep him home, she refused to allow us to talk to the EA.
The board Occupational Safety Officer said he had scheduled a hearing after Thanksgiving weekend. He reluctantly agreed to allow us to attend but only as observers.
The superintendent has promised to deal with the issues ASAP — but wants us to wait till after the hearing
What do you think this is all about? Can you help?
(The answer to this question is a record of the resolution of this situation by the family, with me as the "facilitator." Some minor details have been changed to make the response generic, but the process and the responses are accurate.)
Answer:
After a discussion with me, the parents wrote a letter to the principal which basically said that the "employee grievance should not deny the student the right to attend school since he posed no risk to staff and students."
They requested an immediate meeting with the principal to "discuss how a safe environment will be provided in the interim." Copy to the superintendent.
The superintendent responded. She set up a meeting the next morning at the school. The parents and I met with the pincipal and superintendent and an emergency plan was devised. The EAs in the school were shuffled and a temporary switch was made.
Mom came into school and worked with the new EA going over what needed to be done and "modelling" the care to be provided. The parents agreed NOT to interact with the original EA while the grievance was pending. The next day a VON nurse would come in and check that a safe environment was in place.
The student returned to class after the meeting, at approximately 11 a.m. that morning.
Last Tuesday the Occupational Health and Safety hearing was held at the board and we observed. The EA gave her testimony:
She testified that with a reduction of two EA positions at the school (and no reduction of special needs children) she was now responsible for supporting the academic and behavioural needs of four other students, three of whom were in other classrooms.
She felt that from her medical training she had an obligation to inform her supervisors that she was no longer able to provide a safe environment for the parents' son. She believes that she can work (and has worked) with other pupils, but for two years she has operated on the assumption that meeting the parents' son's physical needs was her first priority, helping other students was a secondary priority. When no adjustment was made in her schedule, she filed a work refusal.
IN ESSENCE, THE GRIEVANCE HAD BEEN FILED ON BEHALF OF THE PARENTS' SON!
Since the work refusal was NOT about employee safety, the grievance was DENIED
The hearing gave the family additional respect for the ethics of the EA — they had been angry and frustrated by her actions, but they now understood that she had the best interest of the student at heart.
The hearing gave the family ammunition that their son's needs were not being met. In a subsequent meeting with the Superintendent, an additional EA has been assigned to the school till Christmas, freeing up the original EA to support the student with CP, as well as another special needs child in the same classroom. The Superintendent has promised to seek othe ways to increase student support in the school when the temporary allocation expires in December.
Reflections:
There seems to be a better mechanism in place to deal with EMPLOYEE safety, than there is for STUDENT safety.
If the EA had not had MEDICAL training and ethics, would this issue have ever been raised? The parents had no idea that anything had changed.
If there had not been serious safety issues (possibly-life threatening?) for the child, would the Superintendent put the additional resources in place? What if it was about behaviour management or academic support?
Despite the fact that Special Education dollars have been maintained, I am constantly hearing of massive EA cuts all across the province.
What is the price exceptional students are paying for this reduction?? Are parents made aware of any changes or dillution of support?
What was the response to the EA by the principal when the issue was first raised?
Parents should ask for a timetable of support showing who is providing what support at what time.
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Local news:
Check out your Friday Sudbury Star for our Autism Ontario awareness and thank you notice (placed in Friday October 10th and Friday October 17th editions). October is Autism awareness month!
We look forward to seeing everyone at the Autism Spectrum Disorder and Adult Services meeting tomorrow, Saturday October 18th from 10am - 12pm, conference room A-Child Care Resources Building 662 Falconbridge Road, Sudbury. Call 222-5000 ext 2685 to register or for more information. All welcome!
Jobs at Autism Ontario
Make a difference in the lives of individuals with ASD and their families.
Discover the exciting opportunities to work with Autism communities across the province.
Date Posted: October 15, 2008
Position: Resource Development Officer
Organization: Autism Ontario
Closing Date: October 31, 2008
Date Posted: September 25, 2008
Position: Bilingual Program Coordinator
Organization: Autism Ontario Provincial Office (Position located in Ottawa.)
Closing Date: Open until a suitable candidate is found.
Visit Us!
Visit our booth at the Geneva Centre Symposium. What a great opportunity to meet our staff and get those questions answered at the same time! We will also have a number of our resources for sale. We can't wait to meet you.
Ombudsman Update
Oct. 10/08 - On the first World Autism Awareness Day this last April, families of children with autism across Ontario launched a campaign to send their individual information to the Ombudsman http://www.ombudsman.on.ca/ to communicate the current autism crisis in our province. Their office has since been looking into the matter to determine whether they will conduct an investigation. My understanding is that they are attempting to help some of the families with some of the issues, on an individual basis.
I spoke with the investigator yesterday and they are continuing to gather information so that they can assess the general matter and will be meeting with representatives from both the Ministry of Children and Youth Services and the Ministry of Education over the next couple of weeks. I hope to receive an update from their office soon after that and will be sure to communicate all information to you.
In the meantime, please send in your details (if you haven't already done so) in the framework of the three questions I've outlined below to their office at 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.)
Happy Thanksgiving,
Taline Sagharian
t.sagharian@sympatico.ca
Disclaimer: It is important to do your own research and make your own informed decisions. Please note Autism Ontario does not endorse any specific therapy, product, treatment, strategy, opinions, service, or individual. We do, however, endorse your right to information.
"SANDEE-LEE PARKER"
To:
"Sandee-lee Parker"
There is only one week left to take advantage of the Early Bird registration fee for the workshop, "Addressing Challenging Behaviours of Children with Autism & other Special Needs." Don't forget about our additional discounts for Autism Ontario members, students and current BCTS clients! For more information on discounts or to print a registration form, visit our website at www.BCTSDurham.com
The presenter for all workshops will be Sandee-lee Parker, M.A., B.C.B.A. Sandee-lee received her M.A. in psychology with a specialty in Behaviour Analysis from the University of Nevada, Reno. She is a Board Certified Behaviour Analyst and has been working with children with Autism and other special needs since 1986.
Addressing Challenging Behaviours of Children with Autism & other Special Needs
Dates: Thursday, November 20 & 27, 2008
Time: 6:00 to 9:00 p.m. both evenings
This two-part workshop will do more than just teach participants to manage challenging behaviours including, but not limited to, aggression, self-injury, pica, stereotypic (self-stimulatory) behaviours, and destruction. The emphasis in this workshop is on the identification of the function of the behaviour. All behaviour, even those we deem inappropriate, serve a function. Participants will learn how to conduct a functional analysis of the behaviour (not just an ABC chart), identify appropriate replacement behaviours, and teach functional communication in order to create meaningful behaviour change that maintains over time.
Early bird registration before October 24: $105.00
Registration fee after October 24: $120.00
For more information contact
Sandee-lee Parker, M.A., B.C.B.A.
Clinical Director
Behavioural Consultation & Therapy Services, Inc.
105-1450 Hopkins Street
Whitby, Ontario, L1N 2C3
www.BCTSDurham.com
sandee.parker@rogers.com
905-665-6635
Fax: 905-665-0937
From Nancy’s List
Attached to this mailing is a flyer for an information session being hosted by Kerry's Place. This session targets families new to the diagnosis and want to find out about all the resources that may be available.
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Also attached is a flyer regarding an Employment Event for Youth With Disabilities ages 14-35 (GTA resource)
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A listmate sent the follow message and link:
Looks like the benchmarks will also be discussed at the ONTABA conference next month.
http://www.ontaba.org/pdf/2008_conference/2008brochure.pdf
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From: CTV.ca
Ontario failing adults with autism: report
Updated Wed. Oct. 15 2008 12:53 PM ET
The Canadian Press
TORONTO -- An advocacy group for people with autism says the province has a "piecemeal approach" that leaves some of society's most vulnerable without the help they need.
Autism Ontario says in a discussion paper released Wednesday that services for adults with the developmental disorder don't qualify for funding or support in some parts of the province.
That's because some areas of the province use intellect as criteria for receiving developmental services.
Many people with autism have average or above-average intelligence but struggle with communication and social interaction.
The report calls on the government to develop a provincewide framework to support adults with autism and standard eligibility criteria, as well as create an education and research centre.
An estimated 70,000 people in Ontario have autism, including about 50,000 adults.
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And Canadian Press:
Aging parents fear autistic adults will be 'forgotten' in 'piecemeal' system
21 hours ago
TORONTO — Ontario has a "piecemeal" approach to treating autistic adults that must be dramatically changed to support the estimated 50,000 adults suffering from the developmental disorder, an advocacy group said in a discussion paper released Wednesday. The report by Autism Ontario, entitled "Forgotten," said the government needs to form a framework for dealing with adults suffering from autistic spectrum disorders.
Howard Weinroth, co-chair of the committee that compiled the paper, said autistic adults and their families or caregivers need educational, employment and social opportunities, as well as supported living options.
"Failure to act now to alleviate the inadequacy of resources to this sector can only increase the growing cost to health care, social services and the educational system, along with lost productivity of individuals with autism," Weinroth said.
The lack of support is particularly daunting to aging parents who care for adult children with autism.
Richard Hales's son Liam will soon turn 20 years old. Intellectually, he is gifted. He also has Asperger's syndrome, a type of autism spectrum disorder, and suffers from debilitating anxiety that requires constant care.
But the necessary programs and supports aren't always available, Hale said, describing the difficulty in finding a dentist willing to treat his son, as well as months spent waiting for an anesthetist to be available.
"Currently in Ontario there is a huge gap between which supports and services should be available to adults with autism spectrum disorder and which ones actually exist," Hales said.
"It is this gap that causes my wife and I to fear for Liam's well-being when we are gone, and it's a fear we share with other parents of adults with ASD."
Jeanette Holden is a Queen's University autism researcher whose 55-year-old brother suffers from the disorder. Years ago, she moved him and her mother from Vancouver so she could take over his primary care.
In May of last year, however, Holden was diagnosed with an acute form of leukemia.
"I spent a month in the hospital and the only thing I could think of was what was going to happen to my brother now," Holden said.
"About a month after I finished chemotherapy, my mother was diagnosed with breast cancer. (His) two lifelines to the rest of the world were being held back."
Autism Ontario's paper called for a provincial framework that would include more programs, funding that can't be "clawed back" through cuts, and better access to professional supports such as psychiatrists, doctors and dentists.
The report also said there needs to be standard eligibility criteria for adults with autism spectrum disorder, instead of the current arrangement where, in some regions of the province, they don't qualify if their intelligence is too high.
Many people with autism have average or above-average intelligence but struggle with communication and social interaction.
The report also recommends the creation of a "knowledge exchange centre" that could guide research, educate caregivers, provide specialized information and track services.
Community and Social Services Minister Madeleine Meilleur said many concerns included in the report are being addressed by the Services for Persons with Developmental Disabilities Act, or Bill 77, which received royal assent last week.
"I look at their recommendations and quite a lot of the recommendations are the same recommendations we had when we did the review in preparation of Bill 77," Meilleur said.
She said the ministry took the recommendations "very seriously" and would study them and come back with an answer "sooner rather than later."
The act would eliminate the low-intelligence criteria to receive funding, she said.
Weinroth said the act is a step in the right direction.
"There are a lot of questions that still remain," Weinroth said. "There's a lot that isn't in Bill 77 to address our concerns."
Autism is a developmental disorder of the brain and causes symptoms such as difficulty communicating and interacting socially and unusual, repetitive behaviour.
The range of impairment from the disorder, which has a prevalence of about one in 150 among children, runs from mild to highly debilitating.
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The Forgotten Report on services and supports for adults with ASD ( is at the link below)
http://www.autismontario.com/client/aso/ao.nsf/Adults/Case+for+Support?OpenDocument
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Autism Ontario's Media Release this week:
For Immediate Release
October 15, 2008 (Toronto)
A FORGOTTEN PEOPLE: Adults with Autism & Adults with Aspergers
Adults with Autism and adults with Asperger Syndrome in Ontario have been forgotten. Can’t we do anything to help these people achieve their best quality of life? Autism Ontario and members of the Ontario Partnership of Adults with Aspergers & Autism will release its discussion document about what must be done: FORGOTTEN. Ontario Adults with Autism & Adults with Aspergers on Wednesday October 15 at 10:00 a.m. at the Queen’s Park Media Studio, Main Legislative Building, Queen’s Park, Toronto.
Currently, there is inconsistent government policy regarding the support and services for adults with Autism Spectrum Disorder (ASD). The needs of these vulnerable individuals requires multiple Ministries to work together to begin to address the ever growing number of adults with ASD in Ontario. Families and caregivers are not receiving the desperate help they need. Parent Heidi Penning states “I have spent every day of Hayden’s life worried about his future. Worried about what would happen to him if I died tomorrow”.
Some steps have been taken to treat, educate and support individuals with ASD; in fact, self –advocate, Tony Hill, says: " Living with ASD is very challenging but it doesn't overwhelm me because I have support for my anxiety and rigidity. I am fortunate to be involved in a program with people who are my friends and have similar challenges…". But with a current rate of 1 in 150 children diagnosed, this translates into over 70,000 people in Ontario with ASD – the majority of whom are adults; most are not receiving what is needed to live out their lives with dignity in local communities. The current level of financial commitment for our most vulnerable citizens is unacceptable!
Parent Howard Weinroth notes “My son Jordan is now 36 years of age, many tears since he can be referred to as a child. His needs have changed remarkably since he was that “beautiful child,” but the services, supports and programs, which should be in place are woefully inadequate”. Ontario must continue to increase funding and capacity for treating and supporting the specific and individualized needs of adults with ASD, from their formative childhood and school years and through-out their lifespan.
Since 1973, Autism Ontario (with 30 Chapters across Ontario), has been a key voice of families with children and adults who have ASD. To obtain a copy of the document or for further information, visit www.autismontario.com
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Bracebridge Examiner and Gravenhust Observer:
Family split apart to care for autistic son
by Karen Longwell
Oct 15, 2008
PLAY TIME. Andrea Nicholson watches her son Alec, 3, play with an organ. Alec was diagnosed with a severe type of autism in April 2008.
Three-year-old Alec Nicholson runs in circles and yells in a high-pitched tone. At first glance, he looks like most three-year-olds but, in April of this year, Alec was diagnosed with a severe form of autism.
His family – or the “A-team,” as they call themselves – mother Andrea Nicholson, father Aaron Nicholson and brother Ayden, five, were split apart soon after Alec’s diagnosis.
Frustrated with their struggles, Andrea helped organize a meeting of the Medicare for Autism Now Society on Oct. 9 at the Royal Canadian Legion Branch 161 in Bracebridge. Medicare for Autism Now is a national campaign focused on initiating change to government policy to make autism treatment available for all Canadians.
The urgent need to get Alec early treatment sent Andrea outside of Bracebridge in search of a place without a long waiting list.
“If we leave it (the treatment) too long, it will be a lot less affective,” said Aaron. “He can become a productive member of society.”
The only scientifically proven treatment for autism is difficult to access in Bracebridge and in many places in Canada. If he stayed here, Alec would be placed on a waiting list for two or three years. That would be too long for Alec.
“There’s a window of opportunity for children with autism,” said Andrea, “before behaviours get locked in.”
The treatment is called Intensive Behavior Intervention or IBI. To be effective, IBI must be started for children with autism as early as possible, Andrea explained.
Before Alec turned two years old, the family knew something was different. He should have been talking but he wasn’t – he didn’t even say mom or dad, said Andrea. He also has repetitive behaviours like running back and forth and yelling.
In hindsight, there were signs that Alec was different. When Andrea was nursing, she noticed he didn’t make eye contact the way his brother had. “I didn’t want to compare my two boys,” she said. However, there were differences.
It took several months to get a diagnosis. “You can imagine the shock, the fear, the guilt and the many other emotions that just came sweeping over us at that time,” said Andrea. Since the diagnosis, there has been one appointment after another and long waiting lists for everything, she said.
Andrea took the opportunity to get treatment as quickly as possible, which means living with her husband’s family during the week. Aaron has a construction business in Bracebridge and needs to stay in this area to support the family financially.
Andrea doesn’t want to name the exact location where she gets treatment because the organization asked her not to. In this community, she is able to attend three autism parent support groups and get pre-IBI for her son. Alec started speech and occupational therapy right away, said Andrea.
The separation from friends and family is difficult. “We drive home to daddy on holidays – like Thanksgiving and any other chance we can get,” Andrea said. “We miss our friends and our daddy very much.” For now, though, the family has no other choice.
“I want to see change and I want to see change fast because it is wrong that we have to be split from our family and all of our support – our friends,” said Andrea. “I want to bring all family back together and be in my home.”
Medicare for Autism Now Society’s founding director, Jean Lewis, who is from Vancouver, has been an activist for autism for more than a decade. She started soon after she learned her son has a severe form of autism.
Lewis became involved with activism because she found, at that time, the treatment was not covered under the Canadian medical system. Things have improved; Andrea’s treatment for Alec is covered, but she should be able to access treatment closer to home.
“There is no reason why Andrea or anyone in this country should be separated from their families so their child can have their core health treatment attended to – not in this country,” said Lewis. “Andrea’s story is compelling but I could tell you hundreds of stories.”
Lewis said the Canadian government should act quickly because cases of autism are increasing. “This is a national crisis of epidemic proportions,” she said. “The centre for disease control is saying that autism is one in 150 and one in every 94 boys in North America.”
In order to make a change, the society is going to ridings where the federal election race was close and asking constituents to vote for candidates who support increased access to scientifically proven autism treatment. Lewis said the riding of Parry Sound-Muskoka is home to Canada’s health minister, which is another reason to come here and speak.
Locally, New Democratic Party candidate Jo-Anne Boulding and Liberal Jamie McGarvey said yes to supporting autism, according to Lewis.
The Medicare for Autism Now Society was incorporated in August 2008. It is a national coalition of non-partisan, parents, advocates, professionals and growing numbers of other fair-minded Canadians seeking Medicare coverage for effective, science-based autism treatment, otherwise known as IBI or in some areas ABA (applied behavior analysis).
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From the Calgary Herald:
Early diagnosis paramount
Alex Frazer-Harrison
For Neighbours
Thursday, October 09, 2008
Autism is one of the most common developmental disabilities, but for many, it's also one of the least understood.
The Autism Society Canada says more than one in 200 Canadians have some form of autism spectrum disorder -- one in 165 children.
"Autism is a neural developmental disability," says Lyndon Parakin, executive director of Autism Calgary Association. "There's very little known as to the cause of autism, and some controversy over potential triggering factors ... whether environmental or possible genetic disposition."
Ada Aponte knew her son was developing slowly, but did not immediately know he had autism.
"He was delayed and by the time he was four, he had no language whatsoever," she says, adding he did like computers and could play computer games really well. "So we thought maybe he was a nonverbal kid and a bit of a nerd, and that was OK with us.
"When we moved to Canada (from the U.S.), he was considered a slow child. He didn't know how to tie his shoes, had sensory issues and he didn't seem to know or care about his surroundings; he went on as if he was the only person in the world."
He was finally diagnosed in Grade 2.
"Once this was established, it was a blessing for us, because we now knew what we were dealing with ... and the treatment we needed to follow for him to perhaps improve," says Aponte.
Autism is considered a non-visible disability, and takes numerous forms from mild to debilitating.
"There is a lot of research to support that the sooner the diagnosis is made, the sooner the intervention is made, and the higher the benefit of that intervention," says Parakin, himself the father of two children with autism.
Making things more complex is the vast variety of forms autism can take. "No two individuals with autism will be the same. They won't have the same symptoms to the same degree," says Parakin.
A person with an autism-like disorder can function quite well if given appropriate learning style support, he says.
"Our son showed the signs pretty much from birth -- didn't make eye contact, was always flighty, and some kids will have issues with food and tastes (and he) was a poor eater," says Lauren Booke, office manager at ACA. "We were able to get him (tested) at 18 months and we got him help."
According to the Autism Calgary Association, autism should only be diagnosed by a professional, and the symptoms include: unusual eye contact, lack of meaningful speech, laughing inappropriately and problems sleeping, eating and using the toilet.
October is Autism Awareness Month in Canada, and Parakin says he hopes to see more knowledge spread about not only the importance of early diagnosis of autism in children, but also of the issues faced by autistic adults, who often get ignored.
"We're still in infancy in supporting adults, and many of these adults are living with aging parents who have struggled with their own careers ... and they don't know what'll happen to their child when they're no longer around," says Parakin.
Autism Calgary Association offers information and referrals for those with autism and their caregivers.
"We claim to have the largest library in Western Canada on autism spectrum disorder. And family education is huge," she says.
ACA has also collaborated with the Friend 2 Friend Social Learning Society, a Vancouver-based non-profit group that fosters opportunities for children with autism to socialize with kids their age, while promoting understanding in non-autistic children about what it's about.
"They've spread the message of acceptance to 10,000 children in Calgary public schools," says Parakin.
The ACA also offers other family support programs (including a multicultural support group), and support worker Maria Mora says the key to their success is the fact the people involved with the association have themselves experienced the challenges of supporting a loved one with autism.
Parakin says because there's no cure as of yet, treatment often involves behaviour intervention, auditory training and teaching the child through repetition and breaking things down "into very simple tasks."
On Oct. 17 and 18, Autism Calgary and Friend 2 Friend co-host the conference, Fostering Peer Play and Friendships in Children on the Autism Spectrum. The conference will feature international autism expert Pamela Wolfberg and Friend 2 Friend founder Heather McCracken in a discussion of the social and friendship needs of kids with the disorder.
For information about the conference, and Autism Calgary Association, visit autismcalgary.com or call 403-250-5033 . For autism inquiries, contact the Autism Canada Foundation (autismcanada.org) and Autism Society Canada (autismsocietycanda.ca).
© The Calgary Herald 2008
--------------------------
This also printed in the Calgary Herald:
Tasered autistic man sues T.O. police
Jordana Huber
Canwest News Service
Wednesday, October 08, 2008
An autistic man was allegedly punched and Tasered at least five times by police who were executing a search warrant in his home, according to a lawsuit -- filed by George Lochner and his family -- seeking $9 million in damages from Toronto Police.
Lochner's lawyer, Clayton Ruby said emergency task force officers used "abusive" and "unnecessary" force against the 43-year old developmentally disabled man the night they entered his bedroom looking for his brother Silvano Lochner, 50.
Photos taken of Lochner following the incident show what appear to be five sets of Taser marks on his back, stomach, and neck, though it is unclear how many times officers deployed their devices, Ruby said. None of the allegations have been proven in court.
Ruby called for a ban on Tasers saying said the incident is an example of their uncontrolled use by police. He said police are employing the devices as a "quick" and "convenient" alternative to "getting their shirts mussed."
"I can believe he may have looked frightening, he is a large person," Ruby said of his client. "But he is a child and a police officer who would have waited for 30 seconds would have figured that out."
Lochner said Tuesday: "I told them I am George, me, George." He recounted how officers allegedly pushed and punched him and accused him of trespassing on a neighbour's property.
Toronto police spokesman Mark Pugash said police "categorically reject" Lochner's account of the incident.
© The Calgary Herald 2008
-------------------------------
Centretown News, Ottawa:
Filmmaker inspired by brother's autism
Thursday, 09 October 2008
By Michelle Anne Olsen
Emily Senger, Centretown News
Young filmmaker Will Inrig at the Bytowne Cinema, where he first discovered his love of film.
Will Inrig sees what other people don’t. Walking down Rideau Street pedestrians look right through those seated curb-side, but here the young filmmaker sees possibility – stories to be told. But Inrig doesn’t write these stories. He films them.
The 17-year-old graduate of Canterbury High School took home the prize for best high school animation at the Ottawa International Animation Festival in September. His stop-motion short, The Depose of Bolskivoi Hovhannes, beat out competition from around the world.
Now Inrig has started filming a documentary on autism for the National Film Board, making him one of the youngest filmmakers in Canadian
history to have a production green-lighted by the board.
The Fantastical Ballet of the Mind and its Master focuses on what Inrig calls “autistic fantasy.”
It’s a subject close to Inrig’s heart, as his younger brother is autistic.
“I call it ‘zoning out,’ ” he said. “It’s when my brother will be engaged by some particular activity. Maybe he’s spinning toys or listening to a particular piece of music. He goes into another world; he goes into the autistic self. And this I find fascinating.”
Inrig is filming in Montreal, close to the NFB’s national office, at a long-term care centre. He is making a point of focusing exclusively on his subjects rather than interviewing their parents, doctors, teachers or care workers. For Inrig, what matters are the stories that his film subjects have to tell.
But that doesn’t mean Inrig isn’t aware of his films’ aesthetics.
Chris Robinson, director of the animation festival, was instantly struck by Depose, which tells the story of a shepherd convinced that his sheep are plotting against him.
“Visually it is quite striking,” he said. “It has a really rich, mysterious atmosphere. It has a maturity that you don’t see at that level of high school film.”
The NFB could not be reached for comment about its decision to back Inrig’s film, but to Chris Rohde, a professor of animation and experimental film at Carleton University, the reasoning for selecting Inrig is obvious.
“He seems to be coming with his own very personal sense of style,” says Rohde. “It’s very uncommon for a young filmmaker to have one so developed. I do think that a new vision is emerging from his work, much faster than it would from someone else. He has that advantage going into the film board to work.”
Robinson agrees that the board will benefit from Inrig’s work and can always use a fresh Canadian voice in the film industry.
Inrig says that the inspiration for his films usually comes from dreams and it’s “sometimes very hard to put your finger on where you get an idea,” but the inspiration for Ballet is less elusive.
While on vacation at their cottage in Sandbanks Provincial Park in Ontario, Inrig’s brother, 16, sometimes breaks away from the group and sits in the rushing waves of Lake Ontario, with only his face and shoulders visible.
“You look at his face and you realize that he’s not there,” says Inrig, voice cracking with emotion. “He’s somewhere else. But you look into his eyes and it’s just divine ecstasy. It’s extraordinary. And there’s something quite beautiful I see in that, and there’s also something quite tragic and that what’s I have to make a movie about.”
Inrig will continue filming through the fall.
-------------------------------
A father has started a Facebook group, to work at saving the IBI funding for one of his twin daughters. Here is a letter he is asking to circulate to help him with the legal expenses to challenge this release from services.
Hello everyone,
I am writing to you today for several reasons. First of all, I want to thank you for your continued support in our fight to save Delanie's funding for her medically necessary IBI therapy. We received her official discharge letter last week -- her funding ends on Dec 30th -- that is less than three months away and it is a devastating blow to our family and her future. She is not even 5 1/2 years old and yet this program is determining that she cannot be helped by IBI. The problem is that there is no continuum of services in place to pick up where IBI leaves off. Everyone knows this but this program has become a resource allocation program and not a therapeutic intervention program.
Delanie's situation is particularly egregious. She and her sister were given an 12-month assessment after only having had 7 months of proper IBI therapy. The first five months were a disaster at our regional program -- the hours were insufficienct by clinical standards and even after we shaved the girls' heads, the program administrators claimed they had lice and would not let them in the door. When we finally found The Behaviour Institute, a private ABA provider, our girls were bald and had absolutely no readiness skills or evidence of having had 5 months of IBI -- it had been a dismal failure up until that point.
There are many issues here. The most urgent issue for us is to maintain Delanie's funding beyond December 30th. Then there are the broader issues at stake here, which will have an direct impact on every child who is currently in the autism program or who will be in the future, unless changes ASAP. That is why we have been consulting with leading advocates in the province and have retained legal counsel as well. Diplomacy is not going to keep Delanie funded, we know that for certain.
In the past few years, there have been emergency cases similar to ours that have gone successfully before the courts and we have been told that we have a very compelling case. We see this going forward as a multi-step process. The first is to get an immediate stop order to maintain status quo for Delanie while this claim makes its way through the courts. The second is to get a more permanent injunction for Delanie and file an application for a full judicial review. The third and very important step is to file an Ontario Human Rights Claim (as of June, a new "fast track" system has been implemented so we are looking at weeks to mediation, not months or years). We need a remedy for Delanie but we also need pubic interest remedies as well. As Delanie's dad, my first obligation to keep her moving forward and the ONLY way to do that is with ongoing, high quality IBI therapy. However, I also have a moral obligation to use this opportunity as way to help other children in this province and to do my part to put an end to the completely unethical way that children are being cut off from this program throughout the province. I have been told that this is happening to children everywhere. However, no one has heard of a case of a little five year old girl being told that there is no hope for her. I met a mom recently whose daughter was given a similar diagnosis at age 5. The family was able to continue using their own means and today this 13 year old girl has tested with an IQ of 120. What if they had been forced to end therapy 8 years ago? Where would their daughter be today? Delanie -- all children -- deserve the same opportunity to reach their full potential. To "write her off" at age 5 is close to criminal and it certainly violates their professional ethical standards. Again, these doctors are allocating dollars --they are not making decisions that are in the long term best interests of these children.
I am told that I need to raise $20,0000 over the course of this campaign to cover costs. There are people who are helping me raise funds but I am also coming to you directly to ask for you support. I don't like having to do this but looking at the alternative for Delanie, I really have no other choice. I have also been told that this amount of money is actually very reasonable considering what we are about to do. As well, if we are successful in these efforts -- and I have been told by others who have been at this much longer than I have that we have a very compelling case -- then I will return all monies donated back to you.
I am including the information below regarding where to send your donations. Frankly, no amount is too small. You will not only be helping my daughter, but I promise you that the results of this case -- should we be victorious -- will have wide reaching impact across this province and will force the government to reconsider the whole system as it currently stands. This is the first case to test this process and we have been told that Delanie makes an excellent example -- using the legal system -- of discrimination, etc. within this program.
I want to thank you from the bottom of my heart for your support for my daughter and for our family. We literally cannot do this without you and without the others we have met during these very difficult and terrifying times. The clock is ticking -- any interruption in Delanie's therapy will most certainly guarantee regression of skills and behaviours that she is working so hard on to improve. She deserves the same chances for a happy and independent life that any five year old deserves.
Thank you once again and please see below for donor information.
Sisu Law / E.M. Venhola "In Trust"
Sisu Law/kidslaw
Barristers & Solicitors
Park Place South
P.O. Box 22017
Barrie, ON L4N 0Z5
tf. 1.866.580.SISU
fax. 1.877.899.1009
www.sisurightslaw.com
Or you can send them to me and I will forward to Ms. Venhola.
Paul Ceretti
75 Robert st. #4
Hamilton, On
L8L 2P2
(289)396-4862
--------------------------------
This initiative has been circulated by Autism Ontario:
YOUR URGENT ATTENTION IS REQUIRED
Ontario’s Response to the Registered Disability Savings Plan [RDSP]
A representative from the Premier’s office has agreed to meet with a group of disability advocates from various organizations in the near future to discuss the province’s response to the Registered Disability Savings Plan (RDSP).
As you are aware, the government has not yet made clear whether or not an investment in an RDSP will result in a claw-back of benefits paid to an individual through other government programs such as the Ontario Disability Support Program (ODSP). There are indications that the government is preparing soon to announce publicly its position regarding RDSP.
The purpose of the meeting that has been arranged with the Premier’s office is to make very clear that people with disabilities in Ontario want the RDSP protected from claw-backs and will applaud the actions of the Ontario government should it choose to provide such protection and thereby support the efforts of people with disabilities to plan and save for their future needs.
On the contrary, should the government fail to protect the RDSP investments, we want the Premier to know the level of dissatisfaction that will result.
You are asked to support this effort by taking a few minutes today to send a message to the Premier and share your point of view. For your convenience, a draft message containing the key points to be delivered has been provided below as a template. Of course it would be preferable, if possible, for you to redraft the message in your own words adding a personal statement about why this issue is particularly important to you and your family.
The exact date has not been set for the meeting with the Premier’s office, but it is expected to occur very soon, therefore your immediate attention to this matter is appreciated.
Sending a letter by regular mail is the preferred way to communicate your concerns; letters tend to get more serious consideration. In order to leave time for delivery, please make sure that you mail letters no later than Thursday of this week, October 9. If you do not have time to mail a letter, please use one of the other methods of communication, but a letter is preferred.
So that we can keep track of messages sent to the Premier, please send an email to Jeff Dobbin at PLAN Toronto including a copy of your message to the Premier. Jeff can be reached at jdobbin@plantoronto.ca
Following are the ways to contact the Premier:
Mailing Address:
Dalton McGuinty, Premier
Legislative Building
Queen's Park
Toronto ON M7A 1A1
Email: www.premier.gov.on.ca/feedback/
Fax: (416) 325-3745
TTY/Teletypewriter: 1-800-387-5559
Draft Letter Template – change to include your own personal voice and perspective.
Dear Premier,
I am writing to ask that your government take immediate steps to ensure that people with disabilities living in Ontario are able to take advantage of the new Registered Disability Savings Plan (RDSP) without having investments in this plan negatively affect other benefits provided by government such as the Ontario Disability Support Program (ODSP) income supports. As you are well aware, other provinces have taken steps to ensure that the RDSP is not considered an asset with respect to government programs. As a result there will be no claw-back of benefits paid through these other programs for those who participate in the RDSP.
I was very pleased to see the implementation of the RDSP, a program that will help me and my family to plan and save for the future. Given the high rate of poverty experienced by people with disabilities in Ontario, it is encouraging to have such a program that assists in building capacity for future self reliance. As this is a program that comes into effect in 2008, you will understand that I am anxious for the Ontario Government to clarify its position on RDSP investments before we proceed much further towards the end of the year. Your immediate action to ensure that people in Ontario are able to take advantage of this important program will be greatly appreciated.
Yours truly,
-----------------
From the Barrie Advance Newspaper:
Autism chapter needs furniture for new office
October 07, 2008
Families facing an autism diagnosis will soon literally have somewhere to go for help.
Autism Ontario’s Simcoe County chapter is furnishing its first office, at 11 Ferris Lane, suite 205, in anticipation of its grand opening Oct. 29.
The new office will feature a resource library, as well as space for programs for kids with autism as well as for parents to connect and find their way after receiving the overwhelming diagnosis.
“We see young families, families with children ages four, five and six. They’re looking for support,” said Amanda McNalty, the chapter’s president.
When the families receive a diagnosis, the amount of information can be overwhelming.
Children with autism require a complex array of therapies, and their age affects where families can access service. There are also financial implications, especially if a family opts to buy intensive behavioural intervention (IBI) therapy, while waiting for access to a provincial program.
On top of that, families are already stressed, because of the challenging behaviours their children have and others’ reactions.
“A lot of families don’t even go to the grocery store or to a restaurant as a family,” McNalty explained, because their child’s behaviour is often misunderstood.
Offering a sympathetic ear and suggestions on how to integrate a child with Autism in toe community, Autism Society volunteers also help families with books, DVDs, and suggestions about parent-education and special-education resources.
The office will be a home base for programs for children with Autism, as well; for instance, said McNalty, children may benefit from a social skills workshop, so they can learn to talk appropriately to other kids on the playground.
“How do you go up to someone and ask them to play? You just don’t go up and grab a toy – or do things that other parents consider bad behaviour. Instead of screaming to get your way, we teach a child how to start a conversation. Even going to the park can cause anxiety for parents, because their child will not and cannot behave like the other kids.”
The local Autism Society chapter plans to have the office open three days each week, and requires volunteers to assist with answering phone calls and emails, as well as assisting with the resource library. The chapter also requires office furniture, including a small conference table, chairs, a filing cabinet, bookcases and display cases.
To donate items or time, call 726-9082, ext. 441, or e-mail chapter volunteer Tanya Stephenson for pickup of larger items, tjstephenson@sympatico.ca.
The chapter can also be found on the web, by clicking the link provided.
------------------------------
From the Bugle Observer Newspaper and the Victoria Star Newspaper, both in New Brunswick:
Autism ambassadors have message
Published Tuesday October 14th, 2008
Trio needs $1,000 to complete dream of attending Canadian Association for Community Living conference in Ottawa
A6
By Mark Rickard
A karaoke/dance fundraising event planned for the Perth Elks Club will help three young valley residents who live with autism raise money to attend the Canadian Association for Community Living conference in Ottawa in November.
PHOTO BY ROBERT LaFRANCE
The Perth Irving Mainway recently held a barbecue in support of the Upper Valley Austism Resource Centre. From left are Rachelle Broad, Irving Mainway manager; Francine St. Amand, delegate for the CACL national conference; Luke Sinstadt and Aaron Bouma, autism self advocates; and Adam Delong, Irving Mainway employee.
Aaron Bouma from Jacksontown, Luke Sinstadt from California Settlement and Shirley (Curtis) Plourde from Edmundston will host the karaoke/dance fundraising event on Oct. 25 at the Elks Club in Perth-Andover starting at 9 p.m.
"We need to get out the awareness that autism is not just something than can be ignored," said Bouma. "It has to be shown and known Canada-wide what these people can do and what problems they have and what are the solutions. We hope to show people our abilities and that we are more capable than people think."
Francine St. Amand got the idea to take the three to Ottawa when she found out last spring that she would be attending the conference as a delegate for the New Brunswick Association for Community Living.
Over the past several years, she has been involved with different disability organizations. She finds that with all the conferences and events which happen in name of people with disabilities, there are generally few individuals with disabilities who get to go and participate.
"I saw the opportunity here to include three individuals in this important conference," she stated. "This year's CACL conference is a celebration of its 50th anniversary. Those attending the conference will get to see the struggles and progress which has been made in 50 years to improve the quality of life of people with intellectual disabilities."
The conference will only be part of the planned adventure. The group hopes to visits area museums and attractions. Plourde said the fact that she is autistic doesn't mean she is intellectually disabled, and she doesn't see that as limiting her life goals.
"At first I only wanted to go because I love to travel and shop, but now I want to tell people how cool it is that even though I have autism, I follow my dream to be in show business as a magician," Plourde stated. "Right now I am just a magician in training, but I pray for that to come true."
"I want to go to the museums, art galleries and the disability conference. I want to learn about the awareness of certain kind of disabilities," Sinstadt said. "I want to move into a place of my own, but I need money and a job."
Blouma, who has a keen interest in the Canadian military, hopes to talk to some Canadian defense officials about ideas he has to improve armour and make Canadian troops safer in Afghanistan.
"I want to talk about life with Aspergers and the role of Canadians with Aspergers in the Canadian military," he said. "I like to talk about why these Canadians aren't allowed in the military and the difficulties they have."
St. Amand, mother of 21-year old Luke Sinstadt, said she is proud of all three young adults.
"This courageous threesome is willing to go public as self-advocates in the hopes of making things better for those affected by autism. The diversity of these three young adults speaks for the diversity of Autism Spectrum Disorder, now affecting one in 98 children born. When my son was diagnosed in 1993, there were about 1 in 5,000 children being diagnosed with autism," she stated. "The message that we want to bring forth is we are all in this together regardless of what your disability is."
Funding for this trip is coming from various sources. Wesley Fournier is also attending as a support worker. Both he and St. Amand have "cashed-in" their CACL and NBACL sponsored plane tickets in order to rent a van for all to travel in and to offset the registration fees for the three self-advocates.
The Upper Valley Autism Resource Centre is donating $300 and the Grand Falls Association for Community Living is donating $100 for meal expenses.
"It's taken some creative spreading of resources. I'll be sharing a room with Shirley and the three guys will be bunking down in a room together," she stated. "The NBACL staff in Fredericton is also doing a lot of negotiating on our behalf to reduce costs where possible."
The CACL national conference will be held in New Brunswick in 2009, and if the Ottawa trip is a success, the group hopes to be on the agenda for the next national meeting.
St. Amand hopes that the trio of self advocates will raise awareness about autism.
"The old adage ‘it takes a village to raise a child' has not been the experience for most families who have children with autism. For most, their lives are lived in isolation. Apart from professionals involved in the lives of these families, natural supports and friendships are very limited for both the child and the parents.
"The most gut-wrenching aspect of raising my son has been to witness the loneliness he has experienced throughout his teenage years and now, as a young adult," St. Amand said. "Despite his efforts to connect with others, his efforts are generally not reciprocated. The need for love and a sense of belonging is a basic human need, regardless of abilities or labels.
"It's the driving force behind what most of us breathe and live for. When this need is not met, people tend to live in the shadows of their own lives."
Anyone wanting more information on the CACASL conference or who wish to donate can contact Francine St. Amand at 273-3980.
------------------------------
This was shared by a listmate, an employment opportunity for some GTA youth to work with our kids and other special needs kids in the Toronto Public School Board:
JOB POSTING
DEADLINE: Wednesday October 22, 2008 - 12:00 p.m.
CAP Youth Initiative
Contracted Services and Partnership Development
Temporary Job Posting
The TDSB is looking for motivated Youth to help clients at several Community Access Program sites to access computer terminals, the Internet and specialized software and hardware for persons with disabilities.
If you are:
between the age of 15 to 30;
a student currently enrolled in a post-secondary institution;
a youth who has completed at least one course at a post-secondary institution;
interested in helping community members;
have a self identified disability or literacy challenge.
Location: There are four locations: 1) 3478 Lawrence Avenue E, Scarborough
2) 33 City Centre Drive, Mississauga
3) 6790 Century Avenue, Mississauga
4) 707 Dundas St. W., Toronto
All locations are wheelchair accessible.
Terms: 14 - 35 hours per week; competitive hourly rate.
Commencing ASAP and ending no later than January 25th, 2009.
Applications:
Contact Garry Green at garry.green@tdsb.on.ca before October 22, 2008 to get a full job description and to submit your application.
Please quote Competition Web-4-All in your email when responding to this Posting.
------------------
And there has been much shared in the past few days regarding the following:
http://www.facebook.com/group.php?gid=43284167864
Denis Leary recently made some extremely ill advised comments about Autism Children and their families. They will be published in a book next month. Mr. Leary has since defended the comments.
The huffington post has an article that provides the following on who you can express yourself to regarding Denis and his extremely ill-advised comments.
The article is here:http://www.huffingtonpost.com/2008/10/15/denis-leary-slams-autism_n_134749.html?page=6&show_comment_id=16838033#comment_16838033
I encourage everyone to take advantage of this list and make your opinion known, politely and respectfully, and pass this list on to your friends and family so they may do so as well...
Company Title Occupation Address Contact
Apostle Actor/Director/ Producer Executive 568 Broadway, Ste 301
New York, NY 10012
USA
Phone: 212-541-4323
Fax: 212-541-4330
http://www.apostlen yc.com/
Representation
Company Agent Type Address Contact
Paradigm Stephen Small Talent Agent 360 N. Crescent Dr
North Bldg.
Beverly Hills, CA 90210
USA
Phone: 310-288-8000
Fax: 310-288-2000
http://www.paradigm agency.com
42West Amanda Silverman Publicist 220 W. 42nd St.
12th Floor
New York, NY 10036
USA
Phone: 212-774-3683
Fax: 212-277-7550
http://www.42west. net
amanda.silverman@ 42west.net
42West Carrie Gordon Publicist 220 W. 42nd St.
12th Floor
New York, NY 10036
USA
Phone: 646-278-5670
Fax: 212-277-7550
http://www.42west. net
carrie.gordon@ 42west.net
Ziffren, Brittenham, Branca, Fischer, Gilbert-Lurie, Stiffelman & Cook Sam Fischer Legal Representative 1801 Century Park W.
Los Angeles, CA 90067
USA
Phone: 310-552-3388
Fax: 310-553-7068
The phone number of Viking Penguin, the book publisher, is 212-366-2000. Their e-mail address is ecommerce@us.penguingroup.com. You can also go to amazon.com, look up the book, and post your comments about it there.
From Nancy’s List
In my last mailing, I advised I would be away until today. I have a large number of e-mails to go through to put together a full mailing, and also have some school issues to focus my attention on this evening, so a full mailing will have to wait a few days.
However, a very important and timely piece of information needs to get out to everyone as soon as possible. In the last 24 hours some have posted this info on other groups and e-mails, sorry for duplication, however, most sources did not give the link to the Benchmarks report and I think it is important to review the summary document put out a few weeks ago when you review the report.
Yesterday, Dr. Nancy Freeman, Chair of the Benchmarks Panel put out Letter 6 to stakeholders, along with posting a copy of their submission to the Ministry on the Autism Ontario website. This is very important reading for everyone to understand the actual proposed Benchmarks being considered.
The Minister's staff have recieved this document a few weeks ago, however, to my knowledge it has not been directed by the Minister to the Regional Service Providers to implement it just yet.
So our work now to express our concerns about this proposal is imperative to move quickly on. I would suggest that everyone take a good read of the link document, and discuss this with your legal contacts and service providers to realize and absorb the full impact this will have on your child.
I will also post below the document I shared a few weeks ago put together following the presentation to stakeholders for your reference when going through the package. Very important issues were raised in that document to consider when reviewing the report.
Nancy
--------------------------------
Here is the link to the Autism Ontario Benchmarks report, copy and paste to get the link:
http://www.autismontario.com/Client/ASO/AO.nsf/object/Benchmark+Development+Expert+Panel+Report+with+letter/$file/Benchmark+Development+Expert+Panel+Report+with+letter.PDF
--------------------
Here is a copy of the letter sent out by Dr. Nancy Freeman, Chair of the Benchmarks Panel:
October 14, 2008
Dear Parents and other Stakeholders:
I’m writing to provide you with a brief overview of the report The Development of Benchmarks for the Delivery of Intensive Behavioural Intervention for Children with Autism Spectrum Disorders in Ontario that the independent Benchmark Development Expert Panel recently presented to representatives from the Ministry of Children and Youth Services and the Ministry of Education.
The benchmarks were developed in response to the Expert Clinical Panel's Clinical Practice Guideline recommendations that benchmarks were needed to determine if a child is benefitting from Intensive Behavioural Intervention (IBI).
Intensive Behavioural Intervention is an evidence-based comprehensive treatment based on the scientific principles of Applied Behaviour Analysis, designed to increase the developmental trajectory/rate of learning for children on the autism spectrum.
The Expert Clinical Panel's Clinical Practice Guideline recommendations also included the need to identify a way to monitor children's progress while receiving IBI, to determine when a child has achieved expected benefit from IBI, and to determine whether a child should continue to receive IBI.
Specifically, the Expert Clinical Panel indicated that children needed to show "benefit especially in language, general cognitive ability, and measures of adaptive behaviour".
In order to respond effectively to the Expert Clinical Panel’s recommendations, the independent Benchmark Development Expert Panel conducted a process to identify benchmarks, including:
• a focused review of research
• a survey of over 80 experts in Canada and internationally
• a review of professional codes of ethics
• consultation with a professional ethicist and the College of Psychologists to ensure that the benchmark process was consistent with ethical and professional standards
• careful consideration of the important issues raised by parents and other stakeholders throughout the comprehensive stakeholder consultation process
Families of children with autism and other stakeholders have repeatedly requested transparent, consistent guidelines for clinical decision making in the provincial Autism Intervention Program.
The members of the independent Benchmark Development Expert Panel agree that all children on the autism spectrum deserve effective, evidence based intervention.
To that end, the independent Benchmark Development Expert Panel report recommendations include:
• a complete list of benchmarks
• every child's progress is reviewed every 6 months, and children mastering the majority (but not all) of benchmarks at a given step continue on to the next 6 month review
• all eligible children will receive a minimum of 1 year of intervention, unless clinically contraindicated, followed by the 1 year of transition services currently available as part of the Autism Intervention Program
• a consistent, uniform review/appeals process for clinical decisions based on the benchmarks
• an administrative and research evaluation of the benchmarks
• an expansion of the continuum of evidence-based interventions and services
The report The Development of Benchmarks for the Delivery of Intensive Behavioural Intervention for Children with Autism Spectrum Disorders in Ontario and the benchmarks can be found at www.autismontario.com
The independent Benchmark Development Expert Panel has worked to create a uniform, transparent, and consistent approach to clinical decision making across IBI treatment programs.
We have a duty to all children so we need to make good clinical decisions based on evidence that also respect family requests for transparency and consistency. Parents of children with autism have been asking for this for a very long time.
On behalf of the Panel, thank you for your input and interest in our efforts to provide transparent, consistent guidelines for clinical decision making and benchmarks to ensure that children receive effective, evidence-based intervention.
The Panel unequivocally supports the development of a broader continuum of both comprehensive and skill focused service models utilizing ABA and other evidence-based interventions to meet the service needs of all children on the autism spectrum, as all children on the spectrum deserve effective intervention.
Sincerely,
Dr. Nancy Freeman, C. Psych.
Chair, Benchmark Development Expert Panel
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and here is another copy of the package put together a few weeks ago regarding this package:
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
Google alert
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Studies suggest a link between artificial food coloring and hyperactive behavior in children
http://www.latimes.com/features/printedition/health/la-he-foodcolor13-2008oct13,0,7679313.story
http://www.latimes.com/features/printedition/health/la-he-foodcolor13-2008oct13,0,7679313.story
From the Los Angeles Times
Do food dyes affect kids' behavior?
Studies suggest a link between artificial food coloring and hyperactive behavior in children. Some experts are skeptical.
By Melinda Fulmer
Special to The Times
October 13, 2008
Almost every parent has a story about their kid bouncing off the walls after downing a package of jelly beans or eating a neon blue-frosted cupcake at school. Most blame the sugar.
But some new research suggests that the rainbow of artificial colors may have a bigger effect on children's behavior. And in other parts of the world, some organizations are starting to take action on these ingredients.
Earlier this year, the UK's Food Standards Agency, the British regulatory counterpart to our Food and Drug Administration, asked food makers to voluntarily recall six artificial colors in food by 2009, a step many food companies have completed.
And in July, the European Parliament voted to add warning labels with the phrase "may have an adverse effect on activity and attention in children" to products with the same six synthetic red and yellow dyes, prompting many large food makers such as Nestle to reformulate their products rather than risk a drop-off in sales.
These actions were spurred by a study published in September 2007 in the medical journal the Lancet supporting what some parents and scientists had suspected for decades -- that food dyes are linked to hyperactivity, even in kids who don't normally exhibit this behavior.
"The position in relation to artificial food colors is analogous to the state of knowledge about lead and IQ that was being evaluated in the early 1980s," says the study's lead author, Jim Stevenson, psychology professor at the University of Southampton, in a March letter to the UK Food Standards Agency, urging action.
But many psychologists and food scientists aren't convinced.
"I think the studies are intriguing," says Roger Clemens, a food scientist and USC professor of pharmacology. "But the clinical data are still wanting."
"I haven't seen any science that tells me I really need to be warning parents against these," says Scott Benson, a Pensacola, Fla.-based child psychologist who treats hyperactive children in his practice.
FDA's policy
The FDA still considers the nine synthetic colors allowed in food -- in grocery stores and restaurants-- as safe as long as each production batch has been certified to meet composition standards.
On its website, the agency points to a consensus report by the National Institutes of Health in 1982 that, the FDA says, concluded there was no "scientific evidence to support the claim that food dyes cause hyperactivity."
But watchdog groups and some scientists say that reference by the FDA is misleading. That same panel, says the Washington, D.C.-based advocacy group Center for Science in the Public Interest, also acknowledged that some children already diagnosed as hyperactive and on a restricted diet experienced an increase in hyperactivity when given moderate doses of artificial food dyes and did not experience similar increases after receiving a placebo.
Now the FDA is reviewing a petition submitted in June by the Center for Science in the Public Interest for a ban on eight artificial food colors certified for use in processed food; Blue 1, Blue 2, Green 3, Red 3, Red 40, Orange B, Yellow 6 and Yellow 5 (tartrazine), a color the FDA concluded in 1986 is a known allergen to a small group of people, causing itching and hives. (A ninth color, Citrus Red 2, is used only on the skin of oranges to make them more appealing and is not included in the center's petition.)
The center is also asking the FDA to require warning notices on the labels of foods that contain the dyes -- which are already listed on ingredient labels until the ban is in place and to require neurotoxicity tests for new food dyes and additives.
"The safety testing on these [dyes] was done 30 to 50 years ago," says the center's executive director Michael Jacobson. "I suspect the tests are out of date and we have higher standards now that would show positive evidence of harm."
Suspicion about the effect of food dyes on behavior swelled in the mid-1970s after San Francisco allergist Dr. Ben Feingold published his book "Why Your Child Is Hyperactive," detailing his research on the behavioral benefits of eliminating food dyes and additives -- guidelines that became known as the Feingold diet.
But a string of studies with poor methodology failed to prove a conclusive link in the years following, and the issue, researchers say, dropped off most people's radar.
Renewed interest
In the last decade, however, scientists have taken up the topic again with some intriguing results.
In 2004, New York psychiatrist Dr. David Schab conducted an analysis of 15 studies on dyes and hyperactivity that he considered to be the most rigorous available.
He concluded that artificial dyes promote increased hyperactive behavior in children who had already been diagnosed as hyperactive.
And two other studies linked artificial dyes to hyperactivity in children who were not already diagnosed with hyperactivity.
The first of these two studies was published in 2003 in the journal Archives of Disease in Childhood. Conducted at the University of Southampton, it involved 277 3-year-old children who were given a diet free of artificial colorings and benzoate preservatives for one week.
During the next three weeks, the children received either drinks containing artificial yellow and red colorings and soda preservative sodium benzoate, or a placebo mixture. The scientists and the parents did not know which children received the artificial colors and preservative and which did not.
The results showed consistent, significant improvements in hyperactive behavior during the period when the diet did not contain benzoate preservatives and artificial colorings, as measured by parents' observations.
Parents reported worsening behavior in their children during the weeks when these ingredients were reintroduced.
On the basis of this and other studies, schools in Wales in 2004 mandated the withdrawal of foods containing these colors from school lunches.
The UK Food Standards Agency then commissioned a second study from the University of Southampton that made headlines on both sides of the pond when it was published last fall.
In that study, 153 3-year-olds and 144 8- and 9-year-olds were given drinks containing one of two different mixes of four artificial colors -- the same ones tested before and Red 40 and Quinoline Yellow -- and preservative sodium benzoate, or a placebo.
The older children showed a "significantly adverse effect" from both dye mixes, as measured by a parent rating of a list of behaviors including concentration, fidgeting, restless or "always on the go" behavior, interrupting conversations or talking too much and fiddling with objects or their own body.
The adverse reaction of the 3-year-olds using this behavior scale was rated significant for only one of the dye/preservative cocktails.
Based on that study, the UK Food Standards Agency asked manufacturers to pull the synthetic colors involved in the study.
So Kellogg's strawberry Nutri-Grain Cereal Bars that are sold in Britain now contain beetroot red, annatto and paprika extract, while those sold in the U.S. are tinted with Red 40, Yellow 6 and Blue 1.
Mark Meskin, a professor of human nutrition at Cal Poly Pomona, who also serves as a spokesman for the food industry trade group Institute of Food Technologists, says he doesn't think a wholesale ban on synthetic dyes is necessary, given the modest difference in behavior noted for most kids in the study.
"We're now seeing small effects [from dyes] but they haven't been dramatic effects," he says, "and they don't explain most of the problematic behavior."
Meskin also says that the studies so far haven't been precise enough to pinpoint which artificial colors may have problems. It's unlikely, he says, that all of them would have the same effect on the brain since they are chemically different and derived from different ingredients -- some from petrochemicals and others from coal tar.
New York psychiatrist Schab says the study was the most damning yet in linking artificial food colors to hyperactivity. The degree of observed differences in behavior by eliminating the dyes and preservative, he says, could be enough to lead some parents not to seek medication such as Ritalin for their child.
Going natural
Headlines about these studies prompted Janice Markham, a Los Angeles-based writer and mother of two, to change her shopping habits.
"Anything I can get without dyes I will," she says. "I look at the packaging on everything."
Markham and other parents are willing to pay a premium for products that are natural. But to date, most large food makers have not reformulated their products.
"We have not seen any clear-cut scientific substantiation of these claims [of hyperactivity]," says Kris Charles, a Kellogg Co. spokeswoman. "At this point, we aren't planning any new U.S. product launches with only natural food colorings." But, Charles says, the company will "continue to monitor consumer preferences and comply with regulations."
Some food makers such as Kraft are putting out separate Back to Nature lines with no food dyes or preservatives.
But Jacobson says generally, if anything, U.S. manufacturers are putting more synthetic dyes than ever in their products geared to kids, such as Kraft's Lunchables line and Pepperidge Farm's Goldfish crackers in a rainbow of colors.
He can't say for sure if kids are consuming more, however, because consumption figures are not measured. But, he says, the amount of synthetic dyes certified by the FDA for use in food between 1955 and 2007 climbed fivefold, from 12 milligrams per capita per day in 1955 to 59 milligrams per capita per day last year.
Given those amounts, the Center for Science in the Public Interest claims, the amounts of dye being used in the studies are probably less than what most children are consuming.
Food manufacturers, for their part, say they use these colors to make foods more appealing to consumers. Yellow food coloring makes waffles look more evenly golden brown. Red or orange dye makes juice look sweeter.
However, food scientists say all of this can be achieved without using artificial colors.
Food makers "have the ability to do it, but they don't want to put any effort into it," says Pete Maletto, a New Jersey-based food industry consultant and food scientist, who has helped companies such as ConAgra reformulate their products with natural colors from plant sources such as beets or turmeric.
Some U.S. companies, he says, have experimented with replacing artificial colors in certain products, but ultimately changed their minds when they knew they would have to charge more.
"It is more expensive. You have to use more (natural pigment) so it costs a little more," Maletto says. "But if you say 'no artificial colors' on the box, you could charge a customer 10 cents more and they would pay it," he adds.
Maletto and other scientists say the majority of food makers won't act unless the FDA moves to ban the colors, or they are required to put a warning label on the package.
"It will be the same as what's happened with trans fats," Maletto said. "Only then will they do it."
From a listmate
From: CTV.ca
Ontario failing adults with autism: report
Updated Wed. Oct. 15 2008 12:53 PM ET
The Canadian Press
TORONTO -- An advocacy group for people with autism says the province has a "piecemeal approach" that leaves some of society's most vulnerable without the help they need.
Autism Ontario says in a discussion paper released Wednesday that services for adults with the developmental disorder don't qualify for funding or support in some parts of the province.
That's because some areas of the province use intellect as criteria for receiving developmental services.
Many people with autism have average or above-average intelligence but struggle with communication and social interaction.
The report calls on the government to develop a provincewide framework to support adults with autism and standard eligibility criteria, as well as create an education and research centre.
An estimated 70,000 people in Ontario have autism, including about 50,000 adults.
From a listmate
NDP October 15, 2008
I would like to congratulate the NDP on their wins here and around Northern Ontario.
As you know families of Autistic children around the rural area of the north, Manitoulin Island, Espanola, Massey etc... have had a very hard time due to the lack of locations.
What bothers me is that if a family is prepared to move to another province, as many have done, they can get their child into the IBI or ABA program immediately, should the treatment not be the same for all Canadian children???
Shelley Martel had worked very hard on bringing Autism to the front table of the Ontario Government and we credit her hard work for our grandson getting the proper treatment and now after 2.5 years of treatment we can see huge changes in him.
We feel very comfortable that in the next few years Alex will be entering into the public school system.
The problem that we have is, who is going to be there to deal with him and the other students when Alex has a melt down???
The teachers of the present public school system do not have the time or the training to deal with autistic children, while they are dealing with all the other children in the classroom
The therapist need to be in the public school system "period" the public school teachers could learn from the therapists and the children would better understand the needs of autistic children. Everybody would gain.
The old rules of not allowing therapists in the public school system, needs to change, just as the students/children of the classrooms has changed.
Call them therapists or call them teachers, just get all Canadian children the education/treatment that all Canadian children deserve.
This would fill up a lot of the empty classrooms that we have across the province.
What we want from the Federal Government is some form of leadership so that all the provinces across Canada offer the same help for all Canadian children.
As you know Ontario has burried the issues in the court system and the children are the ones that are not getting the treatment that they deserve and need today.
The Federal Government(s) have supported a Diabetis Strategy, Cancer Strategy etc...
Why can they not support a National Autism Strategy??? that way all children of Canada get the same treatment across the country, just as is done with Cancer, Diabetis etc...
If autistic children had Cancer, Diabetis or needed a wheelchair, it would not matter where they lived in Canada they would get the same treatment. "period"
Is it just because they do not physically see Autism, rest assured that our country will have to pay big time in years to come to house and treat these children if they don't get the appropiate education/treatment that they need in the early years of their lives.
As has happened during the past Harper government, just saying its a Provincial Issue is not good enough. The children need the intervention early.
We can see that the early intervention with our grandson Alex has made a huge difference Our hats are off to the IBI Program that is run out of Sudbury, and Shelley Martel helped make it possible in the Sudbury area.
A huge next step would be to get the Autistic children & their Therapists into the public school system.
I hope you can keep me informed on the progress that you will make at the Federal level and I will keep the many families in Ontario informed.
Thank you
Dennis Lendrum
182 Syroid Street
Espanola, Ontario
P5E 1G4
(705) 869-0164
There is Nothing Stronger than the Heart of a Volunteer
Yours in Safe Snowmobiling Always
Visit: www.rcsasnow.com
Dennis Lendrum
From: New Democrats
Subject: New Democrats support providing help for families with autistic children
To: "New Democrats"
Received: Tuesday, October 14, 2008, 11:03 PM
Thank you for writing to share your concerns about support for autism.
In the last parliament, Jack Layton and the New Democratic Party caucus challenged the Harper government for not providing funding in its last budget to help families with autistic children. We fully recognize that families with autistic children are in crying need of support and they are very disappointed that the Conservative government ignored their needs in their budget spending.
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 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. We are proud of Mr Stoffer's efforts to help put the needs of Autistic children on the political map.
Thank you again for writing, and 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.
From AO
Special Announcement re: The Honourable David C. Onley, Lieutenant Governor of Ontario
Autism Ontario is delighted to announce that the Honourable David C. Onley, Lieutenant Governor of Ontario, will be our very special guest speaker for the Volunteer Celebration. The Volunteer Celebration takes place at the Holiday Inn Yorkdale (Toronto) on Friday, November 7, 2008 from 7 pm to 9 pm. In addition to hearing from The Lieutenant Governor, awards celebrating the commitment, passion, and drive of our volunteers will be presented.
Please join us. Register your attendance with Karyn Dumble at karyn@autismontario.com.
November Training Opportunities (SEAC Rep Training, Presidents' Council, etc.)
Attached is the outline of what our Toronto-based training will look like for November. This training takes place on November 7, 8, and 9th at the Holiday Inn Yorkdale. Each Chapter is required to send at least one representative. (But the more the merrier!!) We have a terrific line up of speakers and workshops being planned. Stay tuned for updates versions of the agenda as we slot our speakers into their various times.
Autism Awareness Car Ribbons Available Again through the Niagara Chapter
The Niagara Chapter ordered 1000 magnets last June and shared the order with a number of chapters.
Our chapter needs to order again! Surprisingly we have sold over 200 of the magnets, more that we sold in all of last year.
We would like to again offer other chapters the opportunity to share in this order.
• We will sell a 50 magnet minimum to chapters.
• Send your request via email and I will confirm and provide an invoice.
• Cost per magnet on this order is $1.50 and payment is required upon receipt of magnets.
• Payment can be made by cheque, cash or with a copy of a Chapter Cheque Requisition Form requesting a transfer of funds from your chapter to Niagara.
• All orders will be brought to President's Council/SEAC Training Nov. 6th & 7th and picked up at that time unless other arrangement have been made.
• All orders must be paid at time of pick up.
• I must have your order prior to Oct 20th so that I can place the order and have it to bring on Nov 7th.
• As per agreement magnets are to be sold for $5 each.
If interested please email orders to sharon.autismniagara@on.aibn.com
We will accept on a first come, first serve basis.
I will invoice you as appropriate.
Thanks
Sharon Svob, CFRE
Regional Director
AutismONTARIO - Niagara Region
60 James Street, Suite 404
St. Catharines, ON L2R 7E7
Tel: 905-682-2776
Fax: 905-682-5609
sharon.autismniagara@on.aibn.com
2008 Volunteer Awards Nominations
The Autism Ontario Volunteer Awards will be presented annually to volunteers from communities across Ontario who have distinguished themselves in their work with our organization and thus benefitting children, youth and adults with Autism Spectrum Disorders (ASD). Award recipients are individuals and teams whose support of Autism Ontario has contributed significantly to the advancement of our mission and vision.
These awards do not replace our annual Gerry Bloomfield Award. Instead they complement the Gerry Bloomfield Award and focus on those who volunteer specifically for Autism Ontario. The Gerry Bloomfield Award will continue to be presented at our Annual General Meeting in June.
Our recognition program is our way of saying thank you to all of you who have contributed time, funds and support to our organization. Even though we are celebrating the winners of these awards, the true winner is us, Autism Ontario.
These awards will be presented during our Volunteer Celebration taking place on Friday, November 7, 2008 from 7:00 PM to 9:00 PM at the Holiday Inn Yorkdale in Toronto.
The complete Nomination Package is attached to this email in PDF form. For more information or additional copies, please contact Karyn Dumble at karyn@autismontario.com.
God's Middle Name
You are invited to an insightful performance sure to interest those living and working with individuals with Autism at Brock Centre for the Arts, St. Catharines on Saturday Nov. 15th. The Niagara Chapter has purchased 70 tickets that we can offer to members at the special price of $20. We are offering a maximum of four tickets per family/membership. Please call the Niagara Chapter at 905-682-2776 or email us at autismniagara@on.aibn.com if you are a member and wish to access this special purchase price.
Click here for Brock link.
Click here for more information and event poster.
Disclaimer: It is important to do your own research and make your own informed decisions. Please note Autism Ontario does not endorse any specific therapy, product, treatment, strategy, opinions, service, or individual. We do, however, endorse your right to information.
Trish’s response from the NDP
Hi Trish -- thank you for giving me a chance to respond to such an
important issue as this one.
I want to assure you that I will be a very strong advocate for this cause.
I know how much families suffer with this and how little our governments
have done to relieve parents and caretakers.
Once elected, I will join forces with our National team and continue to
work with our Provincial counterparts in making this a priority. The work
Shelly Martel did as an MPP and now carried on by France and the Ontario
NDP will be our bench mark. Both NDP MP Peter Stoffer and our Leader Jack
Layton 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.
On the matter of voting, 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' Bill s , 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 hope this helps you decide and I hope I can count on your support. May
you continue to find the strength to advocate for your children and the
many others that find themselves voiceless.
I wish you and your family a Happy Thanksgiving.
Glenn
Google alert
http://centretownnewsonline.ca/index.php?option=com_content&task=view&id=400&Itemid=97
Filmmaker inspired by brother's autism
Thursday, 09 October 2008
By Michelle Anne Olsen
Emily Senger, Centretown News
Young filmmaker Will Inrig at the Bytowne Cinema, where he first discovered his love of film.
Will Inrig sees what other people don’t. Walking down Rideau Street pedestrians look right through those seated curb-side, but here the young filmmaker sees possibility – stories to be told. But Inrig doesn’t write these stories. He films them.
The 17-year-old graduate of Canterbury High School took home the prize for best high school animation at the Ottawa International Animation Festival in September. His stop-motion short, The Depose of Bolskivoi Hovhannes, beat out competition from around the world.
Now Inrig has started filming a documentary on autism for the National Film Board, making him one of the youngest filmmakers in Canadian history to have a production green-lighted by the board.
The Fantastical Ballet of the Mind and its Master focuses on what Inrig calls “autistic fantasy.”
It’s a subject close to Inrig’s heart, as his younger brother is autistic.
“I call it ‘zoning out,’ ” he said. “It’s when my brother will be engaged by some particular activity. Maybe he’s spinning toys or listening to a particular piece of music. He goes into another world; he goes into the autistic self. And this I find fascinating.”
Inrig is filming in Montreal, close to the NFB’s national office, at a long-term care centre. He is making a point of focusing exclusively on his subjects rather than interviewing their parents, doctors, teachers or care workers. For Inrig, what matters are the stories that his film subjects have to tell.
But that doesn’t mean Inrig isn’t aware of his films’ aesthetics.
Chris Robinson, director of the animation festival, was instantly struck by Depose, which tells the story of a shepherd convinced that his sheep are plotting against him.
“Visually it is quite striking,” he said. “It has a really rich, mysterious atmosphere. It has a maturity that you don’t see at that level of high school film.”
The NFB could not be reached for comment about its decision to back Inrig’s film, but to Chris Rohde, a professor of animation and experimental film at Carleton University, the reasoning for selecting Inrig is obvious.
“He seems to be coming with his own very personal sense of style,” says Rohde. “It’s very uncommon for a young filmmaker to have one so developed. I do think that a new vision is emerging from his work, much faster than it would from someone else. He has that advantage going into the film board to work.”
Robinson agrees that the board will benefit from Inrig’s work and can always use a fresh Canadian voice in the film industry.
Inrig says that the inspiration for his films usually comes from dreams and it’s “sometimes very hard to put your finger on where you get an idea,” but the inspiration for Ballet is less elusive.
While on vacation at their cottage in Sandbanks Provincial Park in Ontario, Inrig’s brother, 16, sometimes breaks away from the group and sits in the rushing waves of Lake Ontario, with only his face and shoulders visible.
“You look at his face and you realize that he’s not there,” says Inrig, voice cracking with emotion. “He’s somewhere else. But you look into his eyes and it’s just divine ecstasy. It’s extraordinary. And there’s something quite beautiful I see in that, and there’s also something quite tragic and that what’s I have to make a movie about.”
Inrig will continue filming through the fall.
From AO
Hello Autism Ontario,
We've met with a number of organizations (Community Living Ontario, Abilities, PLAN, etc) interested in encouraging the Government of Ontario to support the implementation of the RDSP without applying penalties (claw-backs) to an individual's ODSP. Attached is a document describing what we are hoping many families and individuals with disabilities will do, which is to personally write a letter to the Premier. Autism Ontario will also write its own letter and also join in various documents indicating that we are part of a coalition. If you have any questions or concerns about this, please feel free to contact me. In the mean time, please pass this along to parents and key individuals you may know. It is important to act quickly. Please let us know if you sent a letter, or if you feel comfortable doing so, kindly copy the provincial office or me on the letter you send.
Thanks,
Marg
YOUR URGENT ATTENTION IS REQUIRED
Ontario’s Response to the Registered Disability Savings Plan
A representative from the Premier’s office has agreed to meet with a group of disability advocates from various organizations in the near future to discuss the province’s response to the Registered Disability Savings Plan (RDSP). As you are aware, the government has not yet made clear whether or not an investment in an RDSP will result in a claw-back of benefits paid to an individual through other government programs such as the Ontario Disability Support Program (ODSP). There are indications that the government is preparing soon to announce publicly its position regarding RDSP. The purpose of the meeting that has been arranged with the Premier’s office is to make very clear that people with disabilities in Ontario want the RDSP protected from claw-backs and will applaud the actions of the Ontario government should it choose to provide such protection and thereby support the efforts of people with disabilities to plan and save for their future needs. On the contrary, should the government fail to protect the RDSP investments, we want the Premier to know the level of dissatisfaction that will result.
You are asked to support this effort by taking a few minutes today to send a message to the Premier and share your point of view. For your convenience, a draft message containing the key points to be delivered has been provided below as a template. Of course it would be preferable, if possible, for you to redraft the message in your own words adding a personal statement about why this issue is particularly important to you and your family.
The exact date has not been set for the meeting with the Premier’s office, but it is expected to occur very soon, therefore your immediate attention to this matter is appreciated. Sending a letter by regular mail is the preferred way to communicate your concerns; letters tend to get more serious consideration. In order to leave time for delivery, please make sure that you mail letters no later than Thursday of this week, October 9. If you do not have time to mail a letter, please use one of the other methods of communication, but a letter is preferred.
So that we can keep track of messages sent to the Premier, please send an email to Jeff Dobbin at PLAN Toronto including a copy of your message to the Premier. Jeff can be reached at jdobbin@plantoronto.ca
Following are the ways to contact the Premier:
Mailing Address:
Dalton McGuinty, Premier
Legislative Building
Queen's Park
Toronto ON M7A 1A1
Email: Dalton.McGuinty@premier.gov.on.ca
Fax: (416) 325-3745
TTY/Teletypewriter: 1-800-387-5559
Draft Letter Template – change to include your own personal voice and perspective.
Dear Premier,
I am writing to ask that your government take immediate steps to ensure that people with disabilities living in Ontario are able to take advantage of the new Registered Disability Savings Plan (RDSP) without having investments in this plan negatively affect other benefits provided by government such as the Ontario Disability Support Program (ODSP) income supports. As you are well aware, other provinces have taken steps to ensure that the RDSP is not considered an asset with respect to government programs. As a result there will be no claw-back of benefits paid through these other programs for those who participate in the RDSP.
I was very pleased to see the implementation of the RDSP, a program that will help me and my family to plan and save for the future. Given the high rate of poverty experienced by people with disabilities in Ontario, it is encouraging to have such a program that assists in building capacity for future self reliance. As this is a program that comes into effect in 2008, you will understand that I am anxious for the Ontario Government to clarify its position on RDSP investments before we proceed much further towards the end of the year. Your immediate action to ensure that people in Ontario are able to take advantage of this important program will be greatly appreciated.
Yours truly,
From a listmate
Trends In Autism Prevalence:
Diagnostic Substitution Revisited
www.ncbi.nlm.nih.gov/pubmed/17975721
Trends in autism prevalence: diagnostic substitution revisited.Coo H, Ouellette-Kuntz H, Lloyd JE, Kasmara L, Holden JJ, Lewis ME.
Department of Community Health and Epidemiology, Queen's University, c/o Ongwanada Resource Centre, 191 Portsmouth Avenue, Kingston, ON, Canada, K7M 8A6.
There has been little evidence to support the hypothesis that diagnostic substitution may contribute to increases in the administrative prevalence of autism. We examined trends in assignment of special education codes to British Columbia (BC) school children who had an autism code in at least 1 year between 1996 and 2004, inclusive. The proportion of children with an autism code increased from 12.3/10,000 in 1996 to 43.1/10,000 in 2004; 51.9% of this increase was attributable to children switching from another special education classification to autism (16.0/10,000). Taking into account the reverse situation (children with an autism code switching to another special education category (5.9/10.000)), diagnostic substitution accounted for at least one-third of the increase in autism prevalence over the study period.
PMID: 17975721 [PubMed - in process]
Note: This does imply that 2/3 of the increase cannot be explained away by better awareness. It is also interesting to note that this study found diagnostic substitution works in both directions, something the Fombonnes never seem to mention.
From a listmate
Hi All,
Attached you will find a flyer for an upcoming Special Olympics Fundraiser. Viktoria's son goes to school with my "Bug" Lauren and skates Special Olympics with her. Viktoria and her family have just recently moved here from Richmond Hill and have purchased Myles Acres. She has generously decided to kick off their opening by doing a fundraiser for Special Olympics. I want to help make this event a huge success for Special Olympics and for Viktoria's family. Please print out this poster and help spread the word.
If you have any questions, feel free to contact me.
Thanks in advance for your support.
Cheers,
Pat La Londe
ATTACHMENT
http://www.westmountexaminer.com/article-257882-Falling-on-deaf-ears.html
Falling on deaf ears
by Nav Pall
View all articles from Nav Pall
Article online since October 8th 2008, 0:00
Be the first to comment on this article
Falling on deaf ears
Nav Pall
While federal parties duke it out over who has the best economic plan to save the country from recession, a new challenge in the medicare system has presented itself.
The Autism Spectrum Disorder (ASD), a developmental disability beginning in early childhood, now affects one in 150 eight year olds, according to the latest data from the Centres of Disease Control and Prevention.
Programs helping autistic children function in society are, for the majority of Canada, under funded by the province and needs federal subsidies to adequately prepare to the growing demand of these services, according to West Islanders Litsa Kamateros and Lea Schizas co-authors of the upcoming book Autism Epidemic: Shaking the system.
“In 10 years we’re going to have a national crisis of double the amount (of autistic cases). If we don’t act now, it’s going to get a lot more expensive,” said Kamateros.
Currently, federal intervention cannot occur since autism is not included in the Canada Health Act. As the number of autistic cases increases, the federal government has attempted to amend the 24-year-old act. However, the cause has been met with some opposition on Parliament Hill.
In 2006, Ottawa -Rideau Canal Senator Jim Munson called for an inquiry in the senate on the issue. In his report 'Pay now or pay later' published in March 2007 called for the federal, provincial and territorial governments to hold a conference on establishing a National ASD Strategy which will include adequate funding and programs for autistic kids and their families.
Since then, Conservative Health Minister Anthony Clement has seen the report and has taken a few steps to improve the current condition of autistic children and their families, according to Munson. Among his initiative was increasing the Child Disability Fund to $2,300 from $2,044, as well as, commission his own report in 2006.Clement was not available for comment.
“(We are) absolutely not satisfied with the steps (Clement) has taken, he saw the report and continues to say the status quo,” said Munson. “This issue cannot be ignored as a federal government…People see (autism) as provincial jurisdiction, but autism has no borders so why put restriction?”
In the West Island alone 7,000 homes are touched by the disability. In order for families to cope with ASD, services must include ABA/IBI treatment, a form of therapy where kid’s behaviours are worked on through repeated drills, occupational and speech therapy may also be needed depending on their specific needs; and for families, respite care is essential for parents needing a break, seeing as taking care of an autistic child requires extra attention.
However, “in March 600 families were on the waiting list for a year or longer (to receive therapy in Quebec),” said Schizas. “The province offers $1,397 yearly, per family…ABA costs $30,000 per child. Then add in (programs that are not covered by the provincial government) like speech and occupational therapy, we’re talking parents paying $100-$300 a week for just one child, and they’re lots of families with two or more.”
Under perfect circumstances, autism can be identified by the age of three. However, the long waiting lists often prevent a child from being diagnosed until the age of four or five years old. In Quebec, funding for ABA treatment stops at six.
Although the province only pays a fraction of the cost for therapy, the cut off year can be detrimental if the child is on the lower-functioning side of the spectrum, since they require the most hours of therapy.
“The earlier the intervention, the better off (kids) are,” said Schizas. “Once the child reaches six years old does (the government) believe at seven they’re cured miraculously and just turn around? Or do they fund until six because these kids have no hope anyways? If that’s the train of thought it’s wrong.”
The problem found in Quebec can also be seen in Ontario where 1400 families are on the waiting list. However, in Alberta lies the exception. There, children are offered services until 18, and families are allocated $30,000 from the provincial government for their programs.
The unequal services offered across the country are causing families desperate for therapy to relocate out west.
“Because everybody is looking to Alberta, what’s happening is a lot of families are moving out there for the program, this creates an influx in the Alberta system and the actual Albertans are being affected because the system is being strained.” said Kamateros.
“People are moving east to west to get services not to get rich, there should be equal opportunity, I’ve heard of families separating over this,” said Munson. “This shouldn’t happen in Canada.”
The long waiting lists and parents having to relocate have caught the attention of a few members of parliament. During the last parliamentary session, NDP, Liberal, and Conservative MPs in the House of Commons attempted to push the government’s hand into improving autism related programs by introducing Bills C-211 and C-304 as well as motion M-172 in April, May and October 2007 respectively.
“(MPs from different parties worked together) and made this a non-political issue (because) autism strikes all forms. Everyone knows someone with autism,” said Peter Stoffer, incumbent NDP candidate for Sackville-Eastern Shore in Nova Scotia, responsible for tabling Bill C-211. The bill intended to include autism therapy in the Canada Health Act but has yet to be called for a second reading.
“Why he hasn’t done anything yet is beyond me, we consider this an investment not expenditure. The sooner we get a new health minister the better off we’ll be,” added Stoffer.
Bill C-304 brought forth by Liberal MP Shawn Murphy of Charlottetown, Prince Edward Island was defeated. His version went one step further to include a nationwide conference on developing a strategy for treatment. Only motion M-172 sponsored by Conservative Andy Scott of Fredericton, New Brunswick was adopted. The motion called for the government to create a national strategy, but no mention of provincial consultation or the Canada Health Act was made.
Parents on the waiting list can search for services elsewhere in the meantime, provided they know where to look. Alternatives in the West Island can be found as close as the YMCA and WIAIH where integration programs “have improved drastically over the years,” according to Erica Nadler, integration specialist at the YMCA summer day camp.
“(Camps) are part of the solution, it’s not one program or another alone that’s going to help the child,” said Nadler. “There’s not one program that works for every child, each is going to take away a little bit from different programs.”
For a listing of where to receive services in the Montreal area, visit www.autismcentral.ca.
To learn more about the upcoming book Autism Epidemic: Shaking the System, or to share your story and fill out a questionnaire visit, www.theautismepidemic.com.
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http://www.canada.com/surreynow/news/story.html?id=8f45d08d-d1ba-40e0-b9c0-012848401d38
Group demands funding for autism
By Amy Reid
Special to Surrey Now
Tuesday, October 07, 2008
"We want medicare for autism and we want it now!" he cried to the crowd, and was met with a standing ovation.
The speaker, Wesley Romey, a 13-year-old boy who was diagnosed with autism at age six, was speaking to a crowd of about 300 people Saturday. The rally at Eaglequest Golf Club was to urge residents to vote for candidates who will fight for medicare coverage for autism treatment.
Autism NOW, a national coalition group, has targeted 14 ridings across Canada, including Newton-North Delta and Fleetwood-Port Kells, using its "two per cent solution." The tactic focuses on constituencies where current MPs won by two per cent or less in the last election, with the hope of influencing enough votes to elect supportive candidates.
The organization contacted the candidates in those ridings and asked them whether they will publicly commit to supporting medicare for autism if elected. In the two Surrey ridings, only the Conservative candidates have yet to respond. All other candidates from major parties have said yes.
Beverley Sharpe, one of the speakers, experienced first-hand the pitfalls of costly therapies.
When her child was diagnosed with autism, her husband left the family. She pawned anything of value, worked overtime, and to this day sleeps on her living room floor so she can rent out rooms in her house - all to pay for treatment for her daughter.
Wesley, though, was the speaker who particularly touched the crowd. Wesley shared with the audience his success with Applied Behavioral Analysis (ABA) therapy. He urged listeners to demand the government fund autism treatment, because he is proof that it works.
"I want to say this to every Canadian out there. It's not fair that every child with autism doesn't get the same chance that I did. If you don't stand up for your children, who will?"
Louise Witt, the Surrey campaign co-ordinator, said politicians must feel their pain, and have the strength to get the job done.
"We need to vote for the politicians who have the integrity to represent their constituents to Ottawa, not bring Ottawa to the constituents."
Medicare for Autism NOW will hold its next rally on October 9 in Ontario.
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http://www.thestar.com/news/gta/article/513203
'I did not attack' police, autistic man says
October 07, 2008
Michele Henry
STAFF REPORTER
An autistic man has denied that he provoked police officers before they allegedly used a Taser to subdue him during a search of his family’s North York home.
"I do not attack," George Lochner, 43, told reporters this morning at the office of lawyer Clayton Ruby. "I did not attack. I did not try to leave the room. I tell the truth."
According to a lawsuit filed in the Ontario Superior Court of Justice, Lochner was Tasered by police on Aug. 11, 2006 in the bedroom of his Verwood Ave. home.
The officers were apparently searching for Lochner’s brother, Silvano, following allegations that he had threatened to assault a neighbour with a sledgehammer.
The lawsuit, which seeks more than $9 million in damages, claims George Lochner was hit at least twice with the Taser.
None of the family's accusations has been proven in court. In a statement of defence, the police and the board deny all of the family's allegations.
Speaking this morning, Ruby called the use of the Taser a blatant misuse of force, especially since he said police did not have a valid warrant to enter Lochner's home.
Ruby called for a ban on Tasers, and described Toronto Police Chief Bill Blair as being “addicted” to them.
“That addiction has to stop," Ruby said.
A spokesperson for Toronto police said the force completely rejects the family's allegations and will vigorously challenge them in court.
"We will put evidence before the court that that wasn't the case," said Mark Pugash. "Our case is laid out clearly."
With files from Dale Anne Freed
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Family sues police claiming Taser raid on son
'I'm a good boy,' autistic man, 43, tells officers after they Taser him in bedroom, family alleges
October 07, 2008
Dale Anne Freed
STAFF REPORTER
A 43-year-old physically and mentally disabled North York man and his family are suing several police officers, including members of the Emergency Task Force, and the Toronto Police Services Board for more than $9 million in damages after he was hit with a Taser in his bedroom.
According to the lawsuit filed in the Ontario Superior Court of Justice, George Lochner was in his second-floor bedroom when emergency task force officers came looking for his brother Silvano, who was wanted for allegedly threatening to assault his neighbour with a sledgehammer.
None of the family's accusations has been proven in court. In a statement of defence, the police and the board deny all of the family's allegations.
Police Tasered Lochner twice and beat him on his face and all over his body, his brother Silvano, 50, said last night at the family home in a quiet, middle-class neighbourhood.
"It was scary. My brother was in his room on the second floor sleeping when emergency task force officers came in with rifles. They said my brother tried to attack them," said Silvano, as he and his mother Lina, 77, showed the Star photos of George's injuries. "We have a medical report that says he was Tasered twice.
"Look what they did to him – he's handicapped, he's autistic," said his brother.
"Our lawyer, Clayton Ruby, will explain it all at a press conference at his office (today.)"
On Aug. 11, 2006, Silvano, who police said showed "violent tendencies," refused to surrender. The emergency task force team, backed up by tactical paramedics, arrived at the Lochner family home, where George Lochner lives with his parents and Silvano.
Police found George's mother and his brother Paul Lochner in the garage. They told police Silvano was out walking their disabled father and nobody was in the Verwood Ave. home.
The Lochners claim police attacked and punched Paul, pushed him to the ground, "pointed guns at his head" and handcuffed him.
Police then went in the home, "clearing" it room by room and found George lying in his bed.
Police say they identified themselves and told the special-needs man not to move, but say he tried to attack them and had to be subdued. But the Lochner family claims that police Tasered George "numerous" times in "drive stun mode" and "full deployment mode."
"I'm a good boy," George reportedly told police after they Tasered him. Silvano was later arrested.
Police say they used no more force than necessary and that he "suffered no physical injuries."
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