Autism News Articles
May 8th – May 11th 2008
Special Events, Hunger Strikes for Autism, Autism Awareness and general articles.
THIS MAILING IS MAINLY ABOUT THE AUTISM HUNGER STRIKE IN QUEEN’S PARK.
Report from Taline
I went to see Stefan again today. He's doing well considering it's day 6 of his hunger strike. He's had several visitors come by, some who have nothing to do with autism but they wanted to wish him well after seeing the CTV news segment from last week.
He had petitions for people to sign. He's been actively soliciting everyone to be there on Tuesday. I have final details to share:
9:00am gather at the Queen's Park south lawn.
10:00am press conference in the media room inside Queen's Park
10:45am question period in the legislature inside Queen's Park
For those of you who don't know how to get to Queen's Park, you can find a map and directions here: http://www.ontla.on.ca/web/go2.jsp?Page=/visitor-resources/location_parking&menuItem=visitor_information_parking&locale=en
Hope to see you there!
Article from The Torontist
View full photos here:
Stephan Marinoiu, the frustrated father of a 15 year-old autistic boy, began a hunger strike outside the Legislative Assembly of Ontario at Queen’s Park last Sunday, May 4. Six days later, he’s still hanging in there, and although he’s reportedly beginning to show signs of weight loss, he appears to be in good health.
Marinoiu’s son Simon is one of an ever-growing number of children on the waiting list for a government program called Intensive Behavioural Intervention (IBI), designed to give autistic kids the social skills to lead a more normal life. The program, which provides 20-40 hours per week of one-on-one therapy, specially tweaked for each individual child, is incredibly effective and phenomenally expensive. And, with autism on the rise (the US Centre for Disease Control estimates that around 1 in 165 children are autistic, up from around 1 in 500 a decade ago), the waiting times are getting longer and longer. Some, like Simon, wait years for treatment.
Simon was denied access to the program because he reached the age cut-off for service while still on the waiting list. The age restriction has now been lifted, but researchers insist that for speech and behavioural therapy to make a real difference, it needs to start when the children are young. In his YouTube video, Stephan Marinoiu says that he is making a stand not just for his own struggle, but for all the children who stand to benefit from the IBI program.
Bruce McIntosh, a friend of Marinoiu’s and a member of the Ontario Autism Coalition, managed to bear the full cost of his own son’s treatment before the two and a half years he spent on the waiting list for government funding finally paid off. “By golly, it works,” he told Torontoist yesterday. “It worked with my kid, I can’t describe the gains he made. My son has great gap
s in his language, he didn’t talk until he was three or older. But Stephan’s boy doesn’t talk at all.” It’s not surprising that McIntosh considers himself one of the lucky ones—despite the fact that he “damn near went broke” paying for his son’s therapy—when you realize that there are more children on the waiting list than are currently in the program.
This isn’t the first attempt that Stephan Marinoiu has made to persuade the government to make good on its promises to improve access to services for autistic kids. In February, he walked from Toronto to Ottawa, through two blizzards, to put his case to the federal government. The journey took him 11 days and earned him a meeting with Minister of Health Tony Clement—who told him that the matter was a provincial responsibility. Now he’s taken Clement at his word and set himself up on the doorstep of the Ontario Legislature.
He’s managed to attract a fair amount of attention so far. The Minister for Children and Youth Services has spoken with him, as has NDP leader Howard Hampton and several members of the conservative party. “I guess they’ve realised I don’t eat politicians,” Marinoiu commented. “But right now I don’t eat anything.”
So far, representatives have focused on Marinoiu’s own son, and have not made any larger promises.
“They take the attitude that if they help Stephan’s boy, he’ll be satisfied and he’ll cut this out,” says McIntosh. “But I’ve been down there with him every evening and he’s not going to buckle. This man escaped Romania in the middle of the night with nothing but the clothes on his back, and there were people shooting at him. He’s not the sort to back down from anything.”
Photos by Miles Storey.
Full photo available above:
Autism Society gets shot in the arm thanks to local school
Amherstburg Public School does fundraising
By Echo Staff
Thursday May 08, 2008
Joshua Couch and his Grade 2 classmates along with family and friends helped their school raise money for autism.
(Photo: Ron Giofu/The Amherstburg Echo)
AMHERSTBURG -- Toonies for Autism was celebrated at Amherstburg Public School with students helping to raise $330 for the Autism Society Ontario Windsor Chapter.
Students paid $2 and were allowed to wear a hat for the day as part of the fundraising event. Janice Taylor, whose eight-year-old son Joshua Couch is autistic, pointed out that the highest rate of autism in Ontario is in the Windsor-Essex County area adding that there are roughly four students in the 500 student school alone with autism.
Taylor said that autism is often misunderstood as there are varying degrees of the affliction. She said her son, currently in Grade 2 at Amherstburg Public School, was non-verbal for a long time before finally becoming verbal.
"All of a sudden, he blossomed," she said.
April was Autism Awareness Month and money raised by the school will go to the Together for Autism Campaign.
"This is a province-wide campaign that helps spread the word and understanding of autism and Asperger's disorders while raising funds for research," she said.
Taylor said her son once told her "I'm not autistic, I'm optimistic" noting he has a positive attitude. She said she has also reached out to other schools such as Western Secondary School to try and raise funds for autism as well.
"Early intervention is the key," added Jody Beaudette, Taylor's sister. "There's not a lot of awareness about it at all."
Taylor said two years at Karate International helped as well as it helped with Joshua's social skills and behaviour.
"That was a big thing for Josh," she said.
Even with autism, Joshua excels at reading and has written several stories.
"I love reading and I like writing stories," he said.
Nancy’s mailer, blue fonts- good job
I was able to get to downtown Toronto last night, with my kids in tow, to meet with Stefan at Queens Park. He is in good spirits, and is doing well, considering this is Day 5 of his hunger strike. His blood sugar has been stable and he is being monitored by some of our listmates on a consistent basis. The Queens Park Security Guards are also keeping an eye on him, Stefan said they have expressed their support to him.
Video of Stefan has been set up on the Ontario Autism Coalition website, and will be updated.
And Stefan's daughter Lia is updating on a Facebook site:
When I arrived there was another mother there, and before I left, a few women came by to offer their support to him, they had no affiliation with autism, but wanted to express their support. Parents and advocates had been coming by all day, most often Stefan had a few people with him... but there are still lonely moments with nobody there, and he is a lone figure in a lawn chair, with his sign - quite a dismal sight. If you can make it downtown to see Stefan, please stop by. Bring him some water, or Gatorade.
He was set up last night with a petition to sign, so please take the time to stop by and sign his petition. Over the weekend and throughout the evening, if there is not another protest or event on, it is free and available parking at the front of the building, and Stefan is sitting on his lawn chair right there beside where you can park. So even just a 5 or 10 minute stop will mean the world to Stefan.
When my daughter (9 yr old twin to my ASD son) met Stefan, she openly gave her opinions of the McGuinty broken promises, and her thoughts on a person who would break such important promises. And believe me, I have never prompted or influenced my daughter with her thoughts on this subject.
Stefan advised that MP Jim Flaherty came out to speak to him, and tried to convince him to stop the hunger strike. Stefan of course refused to, Stefan feels they will not stop him in his mission to get his four items met.
Stefan has asked for the following from our government:
(1) The waitlist must be eliminated by November 1,
(2) There must be ABA in schools,
(3) They need to work with Ottawa to develop a national autism strategy and get more funding for Ontario and
(4) Therapists need to be regulated.
There will be a press conference at Queens Park on Tuesday, May 13th at 10 am. Stefan is very concerned about this conference in that his goals is that enough supporters can attend to raise the bar in the message delivery. There has never been an event so important as Tuesday to show your support for advocacy for our children. I am begging that everyone that can possibly make a trip to Queens Park by 10 am to get there. If you work downtown, take an early lunch to attend, take a few hours vacation time to get there, if you are a stay at home Mom or Dad, ensure you spend your day after dropping the kids off at school to get down to Queens Park for a few hours. You can still make it back in plenty of time to meet the kids after school. Bring your kids with you to the conference, there will be plenty of other parents and professionals there to help you with the challenges - it will be a safe place.
We have a father who has been starving himself for our kids, today is Day 6, Tuesday will be Day 9!!!! We need to show him how much we appreciate his extreme efforts on behalf of all our kids. Liberal Staffers have ensured Stefan has now been set up to get the support for his son that he qualifies for, i.e.: SSAH and some other financial and respite supports, but that has not stopped his hunger strike, because it's a hunger strike for your children and mine and all their needs!!!!!
REMINDER: W5 tonight!!!
This message I recieved from the Associate Producer of tonights show:
Just a reminder that the show is airing this Saturday, May 10th, at 7:00 pm (your local time), on CTV. If you could also notify your friends and family, that would be great.
The autism services feature is the second story of the hour, so its broadcast time is approximately 7:30 pm.
Please stay in touch and let me know how your family is doing.
444 Front Street West
Toronto, ON M5V 2S9
When our Federal government was feeling the pressure for a National Autism Strategy, one of the carrots tossed was to hold a national symposium, which took place last November in Toronto. It was by invitation only, and what transpired at that CIHR Symposium has only now just been released. Here is the link:
From Lindsay Moir:
Ask Lindsay Moir:
When to use involuntary time outs
Friday, May 09, 2008
I am a support worker serving the families of a wide range of special needs children. What are the legalities around the use of "padded time out rooms"? What can a parent do if they do not agree with the use of this technique for their child? What is your opinion of schools who routinely offer "tours" of this padded room to students?
"I had to check the calendar... this sounds like the 1950s....."
The use of systematic physical intervention and involuntary time out are regulated activitities in Ontario and can only be used under strict guidelines. This provincial decision came out of a much-publicized death of a child in a group home, while being restrained.
While no-one objects to a staff member grabbing a child who is about to step in front of a moving bus..... it is not acceptable for educators to simply decide to use restraint and involuntary time out to manage behaviour-- the use of these techniques is strictly controlled.
The SYSTEMATIC use of restraint and involuntary time out require:
• a written plan outlining what specific behaviours warrant the use of these techniques--it is not blanket permission to use them for every thing that happens in a classroom. Generally, it is only as a last resort for providing safety of staff and/or students.
• The plan must include the duration limits and reporting requirements — students cannot simply be put in a room "until they calm down"..... Parents and professionals must be notified of EVERY incident.
• Approval and supervision of a behavioural professional (usually a psychologist) — this person has a professional responsibility to ensure that the plan is appropriate for the student, that staff have appropriate training, that record-keeping and reporting procedures are set-up and followed, and that parents or guardians have been consulted.
• These techniques can only be used by staff with current qualifications and training--- most boards have identified specific courses and re-certification requirements.
• Parental/guardian consultation and input — in most boards this actually means "agreement"- that is that if the parents do not agree, then these techniques cannot be used. This agreement/disagreement must be documented in writing.
The "padded room" reference makes me think of the movie One Flew over the Cuckoo's Nest and the days when every Ontario teacher had a strap in her desk! Society has come a long way from those days — and it will no longer tolerate intimidation and corporal punishment in our schools. The "tours" of the padded room smack of intimidation and bullying (by staff) — I have serious concerns about an administration and/or staff who would do such things. I believe that your Special Education Advisory Committee should be informed of such practices and help to make them illegal in your board.
The Hamilton Wentworth Catholic DSB has an excellent example of a Safe Physical Intervention Policy on their website at www.hwcdsb.edu.on.ca click on "Programs & Services" and look for the policy. Every board should have a policy statement similar to this, but many do not. Failing to give clear direction to staff allows a minority to act as they see fit — perhaps even if their response is out-of-date!
As an educator and a parent (and grandparent), I understand that their are rare and unique circumstances where time out and restraint are necessary components of behaviour management; however, too often it is used without proper oversight and professional consideration — this is not acceptable in Ontario schools. Parents should be vigilant about such practices and allow them only when all the other options have been exhausted and proper professional oversight is provided. Work with the board psychologist or behaviouralist to make sure that "padded cells" are NOT part of the generic response of any educator or school.
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at email@example.com He will answer as many questions as possible.
This from a BC newspaper:
Families wait in limbo for autism assessments
By Pieta Woolley
Publish Date: May 8, 2008
Had Anka Cornea waited patiently for Canada’s public system to assess whether or not her five-year-old daughter had autism, she’d still be waiting. More than two months ago, a doctor at Oakridge Medical Centre referred Kasandra for an assessment. Though the child is bubbly, her words come out as gibberish. Kasandra can’t sit still through a book reading; the sentences don’t make sense to her.
The Fraser Health Assessment Network advised Cornea at the time it could take eight months to see just the first specialist of the multidisciplinary assessment team, she recalled. So she did what so many other Canadians desperate for faster health services do: she took Kasandra to a private clinic.
“Oh, God. Eight months just to get in,” Cornea told the Georgia Straight in a phone interview. “I can’t be patient. I was already losing my daughter. She’s already going deeper and deeper. If I don’t help her now, it’s already late.…She gets so frustrated, she throws tantrums, but they’re not tantrums. I say, I don’t understand you, Kasandra. And she’s just crying. She doesn’t know how to express herself. You smile at her, and she doesn’t smile back.”
The decision cost her: $185 for the first session with the speech and language therapist; $110 an hour for speech therapy; $300 per session for a psychologist. In the long run, though, going private and getting a diagnosis may have saved her money. The B.C. Ministry of Health funds diagnosed-autistic children up to their sixth birthday with $20,000 per year for treatment, and only $6,000 per year after that, to age 18. (The B.C. Liberals went all the way to the Supreme Court of Canada to obtain a 2004 ruling that enabled the province to deny medicare-funded early autism therapy.)
“I just jumped and did whatever I had to do,” Cornea said.
This spring marks five years since the Ministry of Health’s B.C. Autism Assessment Network set targets for assessment waits in B.C. at three to six months. At first, the targets were achievable, BCAAN codirector Dr. Vikram Dua explained in a phone interview. But $3.4 million per year in funding limits the network to about 1,100 assessments per year. In 2006, 1,400 children were referred to the network. Last year, BCAAN got 1,800 referrals, creating a backlog.
“You can’t just look at the kid or do a blood test [to assess whether he or she has autism spectrum disorder],” Dua said, noting that about half the kids he sees are eventually diagnosed with ASD. He estimates that about 6,000 children in B.C. have the disorder, at about one in 155 or 160.
The cure for the backlog, Dua said, is two-fold. First, greater ability among the province’s professionals to diagnose autism—something he’s working hard at building—and more government funding. The average wait time for children under six years old, he said, is usually less than six months, because the network strives to serve the youngest first. Older children can wait much longer.
But Dua also pointed out that some parents who think their children may be autistic become gravely concerned with wait times. If, indeed, a child has ASD, he said, there’s no cure.
“We put so much pressure on parents that they believe there’s this window, that we have to get them before this age.…Yes, a younger brain is more malleable than an older one, but there’s no dividing line [between when children can be helped and when they cannot.]”
No one from the Ministry of Health returned the Straight’s calls by deadline. On the Provincial Health Services Authority Web site, private queue-jumping for autism assessment appears matter-of-fact: “Private assessments are also accepted by the Ministry of Children and Family Development. The private assessment form is available below under “Forms and Documents”. It also suggests that families simply call the College of Physicians and Surgeons of B.C. or the British Columbia Psychological Association for a list of professionals who do private assessments.
This isn’t acceptable, according to Clair Schuman, the executive director of B.C.’s Autism Community Training, a nonprofit agency that contracts with the government to provide information and education to the autism community. Schuman simply wants public assessment times back on track, to the three- to six-month guideline agreed upon during the 2003 process.
“We can dramatically impact the way children and adults with autism function,” she told the Straight on the phone. “The reality is, it’s expensive.…We know that brains don’t suddenly turn into concrete and that children can’t progress past age six, but we know our best bang for our buck, according to research, is under six.”
Waiting an extra month, she said, is not going to change a child’s trajectory, but an extra year, or year and a half, could.
In the midst of this, both Schuman and Dua agree that B.C. has one of the best autism-assessment practices in North America. Dua said this province is the only jurisdiction to coordinate it centrally, and it’s a lot better than it was before 2003.
But Schuman also knows personally how difficult it is to wait for an assessment. As a social worker trained in child development, she knew something was different about her son when he was just 20 months old. But it wasn’t until after he was in kindergarten—and after they visited many doctors—that he was formally diagnosed.
“It’s a terrible feeling to go to the mall and your child is starting to express unusual behaviour and other people are starting to talk to you about your parenting,” she said. “You question yourself, your extended family often questions you. It’s misery. To put families through that…it’s cruel.”
Now that Kasandra finally has her diagnosis, Cornea registered her for kindergarten for this September. The school’s case manager has assured her supports will be in place so she’ll be included and challenged and, hopefully, will learn how to speak to communicate.
“I’m not out of the woods; I’m just starting,” Cornea said. “When they’re not diagnosed, you hear it from everyone, and you can read it on the Internet; someone at the cafeteria is telling you she’s autistic, but you don’t have anything official. What do you do?”
Source URL: http://www.straight.com/article-144666/families-wait-limbo-autism-assessments
From the York Region Papers:
Greg lives his dream at fundraising concert
Arts and entertainment
May 10, 2008 08:42 PM
Greg O’Brien is living his dream.
He has Down’s syndrome and is lead singer of Greg and the Boys, a Markham band playing Backstreet Boys and Temptations tunes.
Greg and the Boys perform Friday at 7:30 p.m. at the Action 4 Autism: The World Within concert, with proceeds going to Under the Banyan Tree, an adult intellectual disability centre for learning.
“We realized how much it meant to Greg (to be in a boy band),” band member Andrew Rossi said.
Mr. O’Brien started singing at Markham’s Brother Andre Catholic High School about two years ago when the band formed among friends.
They also make up a group called 5 With Drive.
They walked 2,500 kilometres from Halifax to Markham last year in support of The Centre for Dreams.
The concert includes a performance by Motus O Dance Company, an autistic performer and a play from Under the Banyan Tree.
The band members are hoping to raise $10,000 for Under the Banyan Tree.
The show is at the Markham Theatre, on Town Centre Boulevard.
Check out www.5wd.ca or e-mail action4autism@gmail for tickets. Tickets are $20 and also available at the door.
Impossible for me to give you all the details for an update on Stefan Marinoiu, the father on a hunger strike at Queen's Park. I was down there with him on Tuesday and Wednesday, then again today.
Stefan has asked for the following from our government:
(1) The waitlist must be eliminated by November 1, (2) There must be ABA in schools, (3) They need to work with Ottawa to develop a national autism strategy and get more funding for Ontario and (4) Therapists need to be regulated.
Stefan asked the MCYS staffers that if the government can't do these things, then he wants them to do one thing only which is for the Premier to come out on Tuesday to tell the families and the public that he won't help our children. Today, Stefan asked me to promise him that I will make sure to ask everyone I know to come down on Tuesday morning to show support. He asked everyone who visited him today to promise him that they would try to bring as many families that they can with them. This is a father of a 15 year old boy with autism who has never received IBI/ABA. Stefan is starving himself outside the legislative building for his child and our children too. He said to me that this is it and there will not be a next time so we need everyone to be there on Tuesday.
The details for Tuesday are being worked on and I'm sure that there will be more information to share over the next day or so but I wanted to give all of you a heads-up now. Please try to make every effort to attend and encourage everyone else you know to come down also.
I will be sure to forward you more information asap.
From a listmate
May 06 2008
Registered Disability Savings Plan FAQ—Matériel administratif
Registered Disability Savings Plan: Frequently Asked Questions
Canada Revenue Agency REGISTERED DISABILITY SAVINGS PLAN FAQ
May 5, 2008
REGISTERED DISABILITY SAVINGS PLAN (RDSP): FREQUENTLY ASKED QUESTIONS
1. Who can be a beneficiary under an RDSP?
A person who is a resident of Canada and who is a disability tax credit (DTC)-eligible individual.
A person is DTC-eligible in a tax year if they have a severe and prolonged physical or mental impairment, and they or another person is entitled to a credit under section 118.3 of the Income Tax Act.
To be entitled to the credit, Form T2201, Disability Tax Credit Certificate, must have been completed by a qualified practitioner and submitted to the Canada Revenue Agency for approval. For more information on the disability tax credit, see Persons with disabilities.
2. Can there be more than one beneficiary under an RDSP?
No. There can only be one beneficiary under the plan. The beneficiary stays the same throughout the lifetime of the plan.
3. Can a beneficiary have more than one RDSP?
No. Only one plan can be established for a beneficiary.
The only exception to this rule is when funds are being transferred from one RDSP to another with a different issuer. The first plan must be ended within 120 days of the new plan being established.
4. Who can open an RDSP?
A beneficiary can open an RDSP and become the holder of the plan.
If the beneficiary is a minor, another person can open an RDSP for the minor and become the holder if that person is:
• a legal parent of the beneficiary;
• a guardian, tutor, or curator of the beneficiary, or an individual who is legally authorized to act for the beneficiary; or
• a public department, agency, or institution that is legally authorized to act for the beneficiary.
A beneficiary may have reached the age of majority but not be competent to enter into a contract. If so, another person can open an RDSP for the beneficiary and become the holder if they are:
• a guardian, tutor, or curator of the beneficiary, or an individual who is legally authorized to act for the beneficiary; or
• a public department, agency, or institution that is legally authorized to act for the beneficiary.
A legal parent who would not otherwise be able to open an RDSP for an adult beneficiary (either because the beneficiary is competent or because the beneficiary is not competent and the parent is not the legal representative) may do so if the parent is, at that time, the holder of a pre-existing RDSP for the beneficiary. This ensures that the parent can transfer to a new RDSP issuer. The pre-existing RDSP must be closed immediately after the transfer of funds.
5. Can there be more than one holder under an RDSP?
Yes. The legal parents of the beneficiary can both be holders under the plan. In addition, the parents and the beneficiary can also be joint holders under the plan.
6. Can the holder of an RDSP be changed?
Yes. Over the lifetime of a plan, the holder can change. For example, if the mother establishes the plan and is the holder, after her death the beneficiary or the beneficiary's subsequent legal guardian can become the plan holder. If at any time the plan holder (other than a legal parent) ceases to be an eligible holder, they must be replaced with someone who is eligible to be a holder of the plan.
7. Does the holder need to be a resident of Canada?
No. The holder does not have to be a resident of Canada. However, the beneficiary must be a resident of Canada when the plan is opened and when each contribution is made to the plan.
8. Who can contribute to an RDSP?
With the holder's written consent, anyone can make a contribution for a beneficiary under an RDSP.
9. How long can contributions be made to an RDSP?
Contributions can be made to a plan until the earliest of:
• the beneficiary's death;
• the year in which the beneficiary reaches 59 years of age;
• the time when contributions to the plan (and any prior RDSP of the beneficiary) total $200,000;
• the time when the beneficiary no longer qualifies for the DTC; and
• the beneficiary is no longer resident in Canada for tax purposes.
10. How does an issuer set up a disability savings plan specimen?
The issuer must submit a copy of the terms of the specimen plan, including the declaration of trust and the application form, to the Registered Plans Directorate for approval. The terms of the plan must meet the requirements under section 146.4 of the Income Tax Act.
11. Who can be an issuer of an RDSP?
An issuer of an RDSP must be a trust company licensed or authorized to carry on business in Canada.
The issuer of an RDSP must also have entered into an agreement with Human Resources and Social Development Canada for the administering of the Canada Disability Savings Grant and the Canada Disability Savings Bond programs.
12. How does an issuer amend an approved specimen plan?
The issuer must submit any amendment it wants to make to the specimen plan to the Registered Plans Directorate for review. After an amendment has been approved, the issuer can notify the contract holder of the amendment and can market any future plans based on the amended specimen plan.
13. When is an RDSP considered registered?
An RDSP is considered registered if all the conditions of subsection 146.4(2) of the Income Tax Act have been met. This includes:
• the specimen plan has been submitted to the Registered Plans Directorate and is approved;
• the social insurance number (SIN) of the beneficiary of the plan and the SIN or Business Number of the holder(s) have been provided to the issuer; and
• when the plan was established, the beneficiary was resident in Canada.
The issuer must submit the information no later than 60 days after the plan is established.
14. When is an RDSP no longer considered registered?
An RDSP is no longer considered registered when it fails:
• to comply with any of the conditions under subsection 146.4(2) of the Income Tax Act;
• to comply with any requirements of the Canada Disability Savings Act or its regulations; or
• to be administered (at any time) in accordance with the terms of the plan.
The Minister of Revenue may defer or waive the deregistration of a plan in certain circumstances.
15. What are the Canada Disability Savings Grant and the Canada Disability Savings Bond?
The Canada Disability Savings Grant and the Canada Disability Savings Bond are federal programs that provide payments to RDSPs. More information about these payments can be found on Human Resources and Social Development Canada's Web site at http://www.hrsdc.gc.ca/.
Posted by Andrew Kavchak (Kavchak) on Friday, May 9, 2008 - 7:47 am:
It looks like the report of the CIHR "by invitation only" autism
symposium that was held in Toronto on November 8-9, 2007, is now
Older updates this week---- Nancy’s List
A brief summary of today's updates from listmates:
Some cash donations were committed to Bruce McIntosh of OAC for Stefan, Bruce has purchased a room for Stefan to stay in overnight for a week. So Stefan will be dry and warm through the night now. firstname.lastname@example.org
A listmate shared she was with Stefan for quite a bit of time today. She had taken some clean, dry clothes for Stefan in case he needed them. Another listmate also went down with some stuff and sat with Stefan for a while.
They reported that MPP Andrea Horwarth came out again and someone from Peter Shurman's office. Howard Hampton also came out to speak to Stefan. CTV was there and CBC came in about 2pm, just as our listmate was leaving.
At this time I cannot find anything online from these media sources. I will share it as links are made available, I received a message that the CTV coverage was "amazing", and hopefully will be available through an online source soon.
Ontario Autism Coalition has posted a video message from Stefan on their website:
and another contact shared:
Paul Bliss from CFTO will do a report on Stephan.. My understanding from sources is that Stefan has had a number of meetings with Minister Matthews and members of her staff... that he has been heard and that he definitely has their ear. He now has a case manager who is going to navigate the system with them and make sure the family gets every available piece of funding they can get -- SSAH, CCAC, etc..
If you can, please take time to stop by and speak to Stefan, he is appreciating all the people that have come down to see him. I hope to be heading downtown Friday later afternoon / early evening.
MPP Julia Munro, made the following statement in the Legislature today:
This morning, just in front of Queen’s Park, I met with Stefan Marinou.
Since Sunday he has been on a hunger strike, demanding that that this government take action on autism.
Stefan is out in front of this building because he has an autistic son. And he wants his son to receive the treatment he needs.
Yesterday, to her credit, the Minister of Children and Youth came out and met with Stefan.
Now it is up to her to talk to the Premier and the Minister of Finance and find the money to meet the needs of autistic children like Stefan’s son.
I asked Mr. Marinou twice to give up his hunger strike, but both times he told me no.
It is not good for his health.
He is out there today because of his love for his son and because the government will not help him.
No one would go on a hunger strike unless they were desperate.
Families whose autistic children have been left to linger on waiting lists are desperate.
They need your help and it is time for you to do something.
Toronto Sun has a video interview of Stefan at the following link:
A father's hunger strike for Autism
May 6, 2008, 1:36 PM
A man held his hunger strike at Queen's Park in Toronto in protest to what he says is the government's neglect of children with autism.
Two repeat reminders:
W5, Saturday, May 10th, 7pm:
CTV's W5 is doing a segment on Autism Issues across Canada on Saturday evening, at 7pm, just before the hockey game. You will see some of our listmates interviewed during this show. It is their last show of the season, and they have ensured that this second segment on autism is inlcuded.
Autism Speaks Toronto Walk for Autism, June 8th, Nathan Philips Square:
and on this mailing I have attached the Autism Speaks Walk Flyer (in pdf). I also have a number of flyers and brochures, if anyone would like to contact me for posting these in your places of work, to support the Walk and your Walk Team.
Voices: 'Have-not' Ontario
May 01, 2008
We asked you whether you agree that Ontario is heading for have-not status. Here's what you had to say.
Perhaps, but due mostly to the premier that is running this province who is so out of touch with the needs of the people. He would rather spend tax dollars on fighting parents of autistic children looking for funding for promises he made during his election campaign. Instead of focusing on real issues facing the people, he spends his time meddling with silly things such as banning smoking in cars with children which for any parent, smoker or not is a no-brainer, to subsidizing large corporations at the expense of the tax-payer.
Patrick Casey, Waterdown, Ont.
Anti-psychotic drug use soars in U.S. children
Updated Mon. May. 5 2008 12:36 PM ET
The Associated Press
CHICAGO -- American children take anti-psychotic medicines at about six times the rate of children in Britain, a new U.K. study suggests.
Does it mean U.S. kids are being over-treated, or that British children are being under-treated?
Experts say that's almost beside the point, because use is rising on both sides of the Atlantic. And with scant long-term safety data, it's likely the drugs are being over-prescribed for both American and British children, research suggests.
Among the most commonly used drugs were those to treat autism and hyperactivity.
In the U.K. study, anti-psychotics were prescribed for 595 children at a rate of less than four per 10,000 children in 1992. By 2005, 2,917 children were prescribed the drugs at a rate of seven per 10,000 - a near-doubling, said lead author Fariz Rani, a researcher at the University of London's pharmacy school.
The study is being released Monday in the May edition of the journal Pediatrics.
By contrast, an earlier U.S. study found that nearly 45 American children out of 10,000 used the drugs in 2001 versus more than 23 per 10,000 in 1996.
There are big differences that could help explain the vastly higher U.S. rate.
A recent report in The Lancet suggested that the U.K.'s universal health-care system limits prescribing practices there. The report also said direct-to-consumer ads are more common in the United States. These ads raise consumer awareness and demand for medication.
While drug company ties with doctors are common in both the U.S. and U.K., Vanderbilt University researcher Wayne Ray said British physicians generally are more conservative about prescribing psychiatric drugs. Ray co-authored the U.S. study, published in 2004.
The new U.K. study, involving 1992-2005 health records of more than 16,000 children, is the first large examination of these drugs in British children. It found the increase was mostly in medicines that haven't been officially approved for kids. They were most commonly prescribed for behaviour and conduct disorders, which include attention deficit disorder.
Side-effects including weight gain, nervous-system problems and heart trouble have been reported in children using these drugs and there's little long-term evidence about whether they're safe for them, the study authors said.
"This highlights the need for long-term safety investigations and ongoing clinical monitoring," they said, "particularly if the prescribing rate of these medicines continues to rise."
One of the most commonly used anti-psychotics in the U.K. study was Risperdal, a schizophrenia drug that is sometimes used to treat irritability and aggression in autism. Its side-effects include drowsiness and weight gain.
Thioridazine, sometimes used to treat hyperactivity in those diagnosed with attention deficit disorder, was frequently used early on. Its use decreased after 2000 when a U.K. safety committee warned of heart-related side effects, the authors said.
Reasons for the increases are uncertain but may be similar to those in the United States, such as an increase in autism cases and drug industry influence.
In both countries, the issue isn't simply how many children are getting these drugs, said Dr. David Fassler, a University of Vermont psychiatry professor. "The more important question is whether or not the right kids are getting the most appropriate and effective treatment possible," he said. Fassler wasn't involved in the study.
Dr. William Cooper, a Vanderbilt pediatrician, said the study shows the drugs are being used "without full understanding about the risks."
"I find it really interesting that we're now seeing increases in other countries besides the U.S., which suggests that the magnitude of this issue is global," said Cooper, also an author of the 2004 U.S. study.
A listmate has shared this media release :
And there were no winners on this one, a sad story all around:
Young lawyer's meltdown
Jonathan Strug disbarred over series of phantom legal cases with
families of schoolchildren
By MOIRA MACDONALD
May 7, 2008
Jonathan Wade Strug was a promising young lawyer with one high profile
case and one landmark lawsuit under his belt within three years of
being called to the bar in 2002.
Yesterday his career came to a crashing, mystifying finish as the Law
Society of Upper Canada disbarred the 35 year old for a series of
phantom legal cases he duped families of schoolchildren into believing
he was pursuing for them.
Readers might best remember Strug for his work as one of the lawyers
who successfully represented Marc Hall, the gay Durham Catholic school
board student who wanted to bring a male date to his prom in the
spring of 2002.
But Strug really proved his mettle when, first as an articling
student, and then as a junior lawyer, he worked on the landmark
Wynberg case with the well-reputed law firm Eberts, Symes, Street and
Corbett (now Eberts, Symes, Street, Pinto and Jull).
The case involved families of autistic children who say the Ontario
government had violated their children's rights by denying them a
special -- and costly -- therapy called Intensive Behavioural
Intervention (IBI) once their children turned six. The families won in
March 2005. But the McGuinty Liberal government successfully
appealed the ruling in July 2006, saving itself millions of dollars in
Strug gained respect from special needs parents for his work,
knowledge and sensitivity. As a result, other parents approached Strug
for help with their own school board battles.
But between Wynberg Part I and II, the young lawyer melted down --
unbeknownst to his firm, it says -- perpetrating a massive deception
on the non-Wynberg families. He left the Eberts firm in October 2005,
in the midst of helping to prepare the fight against Wynberg Part II.
Through his lawyer William Trudell, Strug, now a warehouse worker,
admitted his guilt and remorse yesterday in eight separate phantom
cases. He was not in the Law Society hearing room, counselled by
Trudell to stay away because of his fragile mental state.
But in the words of the Law Society's panel chair, Brad Wright, Strug
"repeatedly, deliberately misled, even lied to many clients, other
lawyers, and the senior partner in his own firm."
What is mystifying however, is why Strug put so much time and energy
into lying. It wasn't like he was doing nothing. He continued to work
overtime, preparing well-done statements of claim, showing children's
families fake court orders in their favour, giving them false court
dates, telling them he'd won them money awards, even encouraging them
to publicize their cases with the media -- yet no paper had been
filed. The cases did not exist.
Strug told Neil and Natasha Cuddy, parents of a boy whom they believed
had been inappropriately labelled as learning disabled, he had filed a
judicial review application for them against Ontario's privacy
commissioner regarding access to documents. But when I called the
courts in late September 2005 to verify the filing, I was
told it did not exist. It was that call that led to the revelation
Strug had lied to the Cuddys about what he was doing -- and the first
complaint Strug was not all he seemed.
The Cuddys -- not part of yesterday's Law Society action -- are now
suing Strug, along with his former firm. Other families say they are
also suing Strug and the Eberts firm.
The question is, why did he do it? The best Strug's lawyer can come up
with is his client was overwhelmed, sleep-deprived, exhausted,
severely depressed and lost his judgment.
But for the devastated families, there are still many questions.
These people not only saw their trust trampled by school boards, and
then the lawyer who was supposed to help them, but also watched their
children permanently lose out on educational opportunities because a
lying lawyer cost them valuable battle time.
"I could imagine doing it to one person. [But] autism is so
politically charged," says Carolyn Borgstadt cryptically. Borgstadt is
the mother of an autistic boy and was nearly sued for slander after
Strug recommended she go to the media about her school board's
non-compliance with court orders, when in fact Strug had never got the
orders in the first place.
"It was crushing, absolutely crushing."
End of mailing