March 13th – March 24 th 2008
Visit often- if you miss out on reading your email!
Read anywhere
www.autismnewsarticles.blogspot.com
Based on what YOU our AFA Membership and families have to say we are making progress in our own communities, differences in peoples’ lives and AFA will continue to provide factual information to all stakeholders, government and the people of Ontario – living with autism.
To add a friend to our E-List, Email autismafa@yahoo.ca
Send PAY IT FORWARD Messages to Lisa at autismafa@yahoo.ca
From AFA’s Pat LaLonde! Way to go Pat and Lauren! Multi- Media Project volunteers!
Below is the link for a documentary that Lauren and I were involved with. My friend Heidi is also featured.
Once you get into Adams site, if you click the puzzle pieces at the top you can move thru the various topics. "Everyday people" has our video. Then when you click "The struggle", Lauren and I are part of the #1 and #4. I speak about education and funding services. Then when you click "Let's discuss" puzzle piece and then click on A blog, you will see 4 topics, Lauren's is Blog # 3 about a hug.
A huge thank you to Adam, a media student from Loyalist College in Belleville. You did an amazing job with your site and video, as well as helping to increase Autism Awareness. Lauren and I were honoured to be part of your project.
Cheers,
Pat and the Lauren Bug
The student websites are finally up and running, you can access my project Autism: understanding a lonely word by clicking here:
http://www.portalonline.org/PORTAL_2008/
My project is the first one that pops up on the site or you can access it by clicking my name on the menu on the left side.
Cheers,
Adam
To send comments to Adam Campbell:
campbell.ae@gmail.com
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http://www.behavior-consultant.com/ssgroups.htm
A very informative website for ABA information, from a Yahoo group.
NEWS FLASH
CNN Wants Your Stories and Questions About Autism For a Full Day of Coverage
On April 2, Autism World Awareness Day, CNN is planning a full day of autism coverage. You heard it right: a full day. To gather content for such...read more
CNN Wants Your Stories and Questions About Autism For a Full Day of Coverage
On April 2, Autism World Awareness Day, CNN is planning a full day of autism coverage. You heard it right: a full day. To gather content for such a massive undertaking, CNN and Dr. Sanjay Gupta are soliciting public input in the form of stories and questions. Here's what it says on the CNN site:
It's your turn to have some of your own questions answered. CNN is planning a comprehensive day of coverage in recognition of World Autism Awareness Day on April 2. The latest statistics from the Centers for Disease Control and Prevention say that at least 1 in 150 children are affected in the United States .
In a report called, the "Myths of Autism" we hope to dispel any misperceptions about the disorder and the people who live with it. We also want to be very clear that there is still a great deal the scientific community has yet to learn about autism and its related disorders.
Here are some ideas that we hope to address:
• Every autistic person has savant abilities in some area such as Dustin Hoffman in Rain Man. Eg: math or memorization
• Thimerosal in vaccines is the main cause for autism.
• Autistic adults will never be able to live on their own. They will always need assisted living care.
Do you think that there are prevailing myths related to autism? What are they? What questions do you need answered?
Does autism touch your life? Tell us your story here: Autism iReport
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"Let Us Tell the World!"
A VERY IMPORTANT READ
People for Education by a listmate
Dear People for Education,
I hope you all had a wonderful March Break!
I am forwarding the March edition of our newsletter below. For a printer friendly version, you can access a PDF at this link on our website:
http://www.peopleforeducation.com/news/newsletters
Thanks,
Jacqui
Newsletter Contents
1. School Closing Updates from Around the Province
2. Who Struggles in School?
3. School Library Money
4. Is Your Child Picking the Right Math Course?
5. Trustees Play Major Role in New Safe Schools Policy
6. More Funding to Open Schools to Youth and Community Groups
7. Student Trustees - Who Are They and What do they do?
8. Funding Announcements Coming Soon
9. Looking for Info? Go to our Website
School Closing Updates from Around the Province
School populations are declining in most boards across the province, and accommodation reviews have been starting up, identifying possible schools to close.
In a public letter about the school closings process (or accommodation reviews) in the Near North board, Director Heli Vail writes that a factor the board considered "was enrolment projections which suggest that we are supporting too many schools containing too few students, as well as the need to provide quality programs with limited resources."
For families affected by the possibility of their school closing, the ARC meetings have implications, from the amount of time their children may spend on a bus to a more distant school, to a drop in real estate values and the loss of income to the community that a school provides. On the other hand, consolidating two small schools into one larger school may mean improved programs, more course choices or better facilities.
Here's a quick look at a few boards in the province.
• The Thames Valley board (London) is reviewing 33 schools in 10 ARCs (Accommodation Review Committees).
• The Near North board (North Bay) is considering 22 schools in 7 ARCs. Extensive information is readily available on its website.
• In the Upper Grand bosrd (Guelph), 24 schools are being reviewed through 5 ARCs, with initial decisions to be made by June.
• The Hamilton-Wentworth board is building ten new elementary schools by 2010. The Hamilton board closed 22 schools between 1999 and 2005.
With six schools in the Niagara-on-the-Lake area of the District School Board of Niagara under review, Stephen Bedford, the Director of Planning for the Town, says, "There should be support for school communities to develop strategic plans for either increasing enrolment or making schools viable over the long term. Instead of dealing with either leave-it-open or close-it options, we should be supporting some schools to explore innovative methods of making schools viable."
Implications for school councils
The Ontario government is asking school boards to draft their own accommodation review policies using the new guidelines. This allows for some degree of flexibility, but it also means that no two boards will have an identical policy. For example, one board may choose to use fundraising as one of many factors in school valuation, but another may not.
Boards may also vary on who chairs their public meetings. Where one board may choose to allow a trustee to chair the meetings, another might settle on a board administrator, school council chair, or may hire independent facilitators. What is apparent is that school councils need to do their homework and study their board's accommodation review policy. And, because it may be a long process, it's important that they elect parents to their school council who are ready to commit to working for their school community.
With contributions from Cathy Cove
Who Struggles in School?
While overall graduation rates are improving in Ontario, and 90% of young people have high school diplomas by the time they are 24, there is still a group of students for whom success in school remains a problem. Studies from a number of sources show that these students are predominantly male, they live in low-income neighbourhoods, and they probably had difficulty in earlier grades, particularly in grade 7 and 8.
There are other things we must pay attention to as predictors of future problems. Students who have fewer than seven credits by the end of Grade 9, particularly those missing either their English or their Math credit or who have a mark of less than 60% in either of those subjects are less likely to graduate than students with the full 8 credits after grade 9. Students taking a majority of Applied and locally-developed courses, students whose mothers had less than a high school level education, and students with high absenteeism are at greater risk of dropping out.
A recent debate in Toronto focused on Afrocentric schools and the higher drop-out rate among black students. But when data is examined more closely, it also shows that a high percentage of Portuguese and Spanish speaking students, Aboriginal students and students born in English-speaking Caribbean countries, Central and South America, and eastern Africa may not graduate from high school.
Ultimately, the greatest predictor of a students' future success continues to be socio-economic. One study by the Toronto District School Board that followed grade 9 students for six years found that "students in the lowest income group had a dropout rate of 33%, three times that of students in the highest income grouping (11%)."
We know a lot about who will struggle in school, but we seem less clear about what we should do about it. Some organizations, like the Fraser Institute, believe that the problem is a lack of choice. They think it would help if parents and students could choose among different types of schools. Others feel we should be focusing on the curriculum - making it more relevant to today's young people. The provincial government has introduced Student Success teachers into Ontario high schools in hopes of identifying struggling students before they fall too far behind.
But the fact remains that intense support and targeted programs make the most difference to students who are struggling in school. The Pathways to Education Program is a predominantly privately-funded program operating in a number of Toronto communities. It provides additional staff and support for these students. Data from that program shows that graduation rates improve dramatically when students are provided with the support they need.
The province funds the Learning Opportunities Grant, which is meant to provide programs for students we know will struggle in school because of socio-economic factors. It was originally meant to provide things like smaller class sizes, more guidance counsellors, child and youth workers and homework programs. Unfortunately, that grant has been diluted over the years and boards must now use a substantial portion of it to provide support for math and literacy programs for all students. Boards may also spend the Learning Opportunities Grant on things like heat and light and school maintenance if they have insufficient funding to cover those costs. In this month's announcements of education grants for 2008/09, the province may either protect or increase the funding in the grant - so that all students have an equitable chance for success in school.
School Library Funding
The government announced last month that it would spend $10 million per year over the next four years to hire about 160 more library staff. It appears that this money will not be released to boards until next September. There were no details as to whether these would be teacher-librarians, library technicians, or clerical staff, or whether the funding would be directed at elementary or secondary school libraries. If money is distributed equally to boards, it will amount to slightly more than two staff per board, or one fulltime staff for every 35 schools.
Currently, although provincial funding is allocated to library staff, it is not protected. Boards decide how it should be spent, and staffing in school libraries varies greatly across the province. Some boards have teacher-librarians in most of their schools. Others have none. Many small schools have no staff in their libraries, and their libraries are closed for much of the school day. Because of funding shortfalls, many boards use their library funding to pay for things like school maintenance and other staff.
During the fall election campaign, Premier Dalton McGuinty promised that his government would provide approximately $20 million per year in funding for books for Ontario school libraries. The Premier identified Indigo Books as the sole supplier of these library books. Book distributors, publishers and school librarians have raised concerns about a single provincial supplier and Indigo's lack of expertise in curriculum texts. No more details about this initiative have been made available.
Is Your Child Picking the Right Math Course?
The results of a recent study indicate that parents and students should think carefully about their choice of math courses in high school. It shows that more than a third of first-year Ontario college students are failing or struggling in math.
The College Mathematics Project, conducted jointly with six colleges and 10 school boards across southern Ontario, looked at more than 10,000 students who entered college in 2006. Thirty-four per cent scored D or F in their first-term math courses. The problem is so widespread that colleges are routinely offering catch-up math courses.
According to the researchers, course selection for Grade 11 mathematics is at least as important as that for Grade 12. They said that many students choose the wrong math courses in high school, and that parents, students and teachers should be aware that many community college technology and business courses require a higher level of math.
Students intent on taking these college courses may be better prepared by choosing the University/College Preparation Functions and Applications course in grade 11, instead of the college-stream course Foundations for College Mathematics. Guidance counsellors can provide advice on these options.
The secondary math curriculum was completely revised in 1997/98, and reviewed and extensively revised again in 2005.
You can read the report at: www.senecac.on.ca/marketing/cmpfinalreport.pdf
Trustees Play Major Role in New Safe Schools Policy
Recent amendments to the Safe Schools Act came into effect on February 1, bringing some new details to light.
School trustees have a much greater role to play under the new rules and they may have to attend many more meetings. Principals are now required to offer parents a chance to appeal all suspensions, and if parents decide to appeal, three school trustees must take part in the appeal hearing. Three trustees must also make the final decision at every expulsion hearing. This is up from one trustee under the previous act.
The amended Act also provides new rules requiring school boards to provide alternative programs for all suspended students. The Act says boards must provide the programs, but it does not say that students must attend them.
For more information on the new rules go to our website at www.peopleforeducation.com
More Funding to Open Schools to Youth and Community Groups
The provincial government is investing an additional $13 million to fund the community use of schools (CUS) for 2008/09. This funding is directed at keeping school facilities accessible to community and youth groups.
Community use of school space has posed an ongoing challenge for many community groups. The SPACE Coalition (Saving Public Access to Community Space Everywhere) released a July 2007 report showing that there were continued barriers to use of school space across Ontario. It found that:
∙ fees for school space continued to rise in spite of provincial CUS funding
∙ community groups cancelled programs due to permit and access problems in school facilities
∙ there was a need for increased accountability to ensure the funding was used to increase access to the school buildings
SPACE has also found that while some boards have very low fee rates, others have maintained high rates, particularly for weekend or summer access, or for certain types of facilities. As well, there are often differences within the same geographic jurisdiction, so community groups may find themselves negotiating with different boards at vastly different rates.
People for Education's 2007 research showed that the areas of the province with the lowest percentage of schools charging fees have the highest percentage of schools reporting community use. Also, in 2007 there was no change in the percentage of schools charging fees for community use from the previous year.
Funding for the CUS program will reach $66 million by 2011/12. Over four years, the new funding includes:
• $43 million to further decrease rates and increase access after hours;
• $17 million annually to make after-hours access free of charge in priority schools (schools in targeted communities where there is a strong need for access to community space); and
• $6.4 million to fund Outreach Coordinators across the province, who will work within school boards to monitor programs, conduct outreach and develop extra-curricular activities.
Student Trustees - Who are they and what do they do?
There are elections for student trustees coming up in April, but many parents and students are surprised to hear they exist.
Under new provincial education law, every school board in the province must have at least one student trustee. The student trustees are elected by students in the board. The new law gives student trustees the right to vote on all board policies and attend most private board sessions, but their vote is not binding.
The law covering student trustees says they should receive an honorarium, they should be compensated for any expenses incurred as part of their trustee duties, and they should have the same status as a board member with respect to access to board resources and opportunities for training.
Student trustees work with the high schools in their board, talk to student councils, and act as representatives of the board's students. They are meant to bring a most important voice - the students' voice - to school board policy tables. Who is your student trustee?
You can visit the Ontario Student Trustee Association website at www.osta-aeco.org.
Funding Announcements Coming Soon
Sometime in March, the Minister of Education will provide school boards with details about their funding for the 2008/09 school year. School boards will then spend the next few months working out their own budgets.
There are a number of changes expected or hoped for this year:
ESL: A number of boards have used at least some of their English as a Second Language funding to cover budget shortfalls in other areas such as maintenance. The Ministry has made some changes to ESL policy, adding a number of responsibilities for school boards. An increase in funding for ESL will allow boards to meet those new responsibilities.
LOG: The Ministry announced last year that changes would be made to Learning Opportunities Grant (LOG). Currently boards can use this funding for other purposes and it is insufficient to cover the costs of programs and staff targeted for students at risk because of socio-economic factors.
Utilities and Maintenance: School boards receive funding on a per pupil basis to cover the costs of heating, lighting and maintaining their schools, but the grants from the province don't match the actual costs in these areas. Funding hasn't kept pace with inflation or with increased fuel costs. Boards are hoping for an increase in this area.
Non-teaching salaries: The province has made changes so that funding for teachers' salaries more closely matches what boards actually pay. But many boards pay much more for staff like custodians, secretaries, principals, psychologists and social workers than the amount they receive from the province. Changes to the funding formula to close this gap would take some of the pressure off ESL and LOG programs.
Transportation: A number of school boards still spend more on transportation than the amount they receive from the government.
Special education: School boards now receive their funding for Special Education based on the number of students in the board. Boards with declining enrolment will see their Special Education funding decline, whether or not they have fewer Special Education students.
Looking for Information? Go to Our Website!
Our new website offers a great store of easily-accessed information for parents, students and those in the education community. You can
• Take a look at our research - Reports on Ontario Schools, Arts, Fundraising, ESL, Libraries, and more;
• find answers to frequently asked questions about education;
• browse our current newsletter or past issues;
• find out how to get involved, join our network, or volunteer; and
• read articles of current interest, like safe schools or homework.
Go to www.peopleforeducation.com and find the education information you need!
Jacqui Strachan
jacqui@peopleforeducation.com
416-534-0100
toll free: 1-888-534-3944
People for Education
www.peopleforeducation.com
(An OLD Media Release but information that may come in handy for parents seeking a pro-bono lawyer!)
For immediate release May 6, 2004
Toronto lawyer and legal organization to be honoured
at first ever Pro Bono Law Ontario Conference
TORONTO -- The Advocates’ Society and Toronto lawyer Bryan Finlay of WeirFoulds LLP will both be recognized May 6 for outstanding leadership in pro bono law and enhancing access to justice in Ontario.
The Advocates’ Society will receive the Pro Bono Law Ontario [PBLO] Distinguished Service Award for its exceptional work on behalf of children with special needs and at-risk youth.
Toronto WeirFoulds partner Bryan Finlay will receive The McMurtry Award, recognizing individuals who have demonstrated exceptional leadership and commitment to pro bono work.
Ontario Court of Appeal Justice Stephen Goudge will present the awards to the recipients at the PBLO conference, “Building the Public Good,” held at the Metropolitan Hotel in Toronto May 6 and 7.
The awards will be presented at a Thursday, May 6 dinner scheduled to begin at 7 p.m.
Canadian Bar Association President William Johnson, Law Society of Upper Canada Treasurer Frank Marrocco, Q.C., and PBLO President Raj Anand will present remarks to open the awards dinner. The keynote address will be delivered by the Honourable Michael Bryant, Attorney General of Ontario.
The PBLO conference is bringing stakeholders together to discuss ways they can work with each other to improve access to justice. It will highlight successful models in Ontario and provide practical guidance on developing and managing pro bono programs and pro bono practices.
The Law Society of Upper Canada is co-hosting the event along with the Law Foundation of Ontario, Legal Aid Ontario, and the Ontario Bar Association.
“Building the Public Good, which is the theme of the conference, requires a government committed to legal aid working together with a legal profession willing to deliver high quality legal services based on client need,” said Raj Anand. “Pro Bono Law Ontario supports and promotes pro bono as a means of improving access to justice in Ontario and sees this conference as an important contribution.”
“The Law Society is pleased to be a sponsor for this important event which recognizes the value of pro bono work in Ontario,” said Law Society Treasurer Frank Marrocco.
“Many lawyers, law firms and legal organizations provide pro bono legal services to those persons who do not qualify for Legal Aid so that the public might have greater access to justice. The Law Society wishes to extend its congratulations to this year’s recipients of the PBLO awards.”
Pro Bono Law Ontario Distinguished Service Award
The Advocates’ Society was established in 1963 to promote excellence in advocacy within the legal profession. In partnership with the Law Society, Pro Bono Law Ontario and Justice for Children and Youth, The Advocates’ Society launched the Child Advocacy Project in 2002.
The Child Advocacy Project helps at-risk youth stay in school. It also assists low-income children in Ontario with physical and developmental disabilities who are not receiving the educational services guaranteed to them by law.
Over the past two years, 64 members of The Advocates’ Society have donated more than 2,000 hours of their time to help children get the education they need. Society members have shown great sensitivity in representing 56 special clients, many of whom have autism, Down’s Syndrome, and learning disabilities.
The Child Advocacy Project has set the standard for effective pro bono programming to help young people. This innovative model is being endorsed and adopted across the province by bar associations in Hamilton, York Region, Simcoe County, and Belleville.
The McMurtry Award
Toronto lawyer Bryan Finlay is the founding Chair and Advocate of the Dickson Circle. The association of litigators across Canada acts pro bono on behalf of clients with disabilities in significant public interest cases.
Finlay approached the former Supreme Court Justice, the Honourable Brian Dickson, in 1997 with the idea to create the new association. The circle was designed to answer the need of legal aid clinics for additional support in complex, test-case litigation.
For many years, the Dickson Circle provided test-case litigation support to ARCH – A Resource Centre for Persons with Disabilities.
Last year, Pro Bono Law Ontario brokered a partnership between the Dickson Circle and Community Legal Clinic (Simcoe, Haliburton & Kawartha Lakes) to pursue legal remedies for clients living with disabilities. Finlay collaborated on three test cases. In two cases, he presented expert legal argument that resulted in successful precedent-setting decisions that affect all people with disabilities in Ontario, as well as those caring for dependants with disabilities. The third case is currently before the courts.
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For more information about the PBLO conference, refer to the PBLO Web site at: http://www.probononet.on.ca/resources/probono_conferenceprogram2.doc
For further information about the awards, contact: Lynn Burns, Executive Director, PBLO, (416) 977-4448, ext. 225.
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From a Listmate
VISIT
http://www.kidspeech.com/.
Nancy Kaufman, M.A., CCC/SLP, is the Director of the Kaufman Children's
Center and has specialized in children with communication challenges
Since 1979. She is regarded as a national expert in her field, she is a
Respected author and she lectures locally and nationally on the subject of apraxia of speech in children. Families travel from all over the world to benefit from her unique approach.
Nancy Kaufman will be in Toronto on Friday, April 11, 2008, to share
Her unique and very successful treatment approach with Canadian Speech and Language Pathologists, parents, teachers, and family members in a
one-day seminar. To register for this program, "The Kaufman Early Intervention Program: Children with Apraxia of Speech," go to the Northern Speech Services web site at:
News clip briefly outlining Nancy's unique and extremely effective method.
Parents who are concerned about their
child's speech and/or language attend. It costs only $119 for each parent.
Thank you.
************
And Another email regarding our Town Hall, WAY TO GO ALL AFA MEMBERS and EXECUTIVE
To everyone involved in last night Town Hall meeting , the planning and the execution,a great big Thank You. It was a very informative event and it has to be unprecidented. Your support by Ministers Wynne and Mathews shows you are definitely on the right track, only great networking and professional skill which your executive has could accomplish such a feat.
Accolades to you!!!
From a Listmate
I thought I would share a resource.
http://www.childnett.tv
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PEOPLESMD
Changing the way people share health information online
My name is Rhona and I'm one of the founders of a new website called www.peoplesmd.com (in beta). Think Digg for health & wellness - only better than Digg because our members organize their favorite bookmarks about specific topics into Personal Guides.
We just posted a guide on Autism called "Vaccine-Autism Debate Back in the News After Court Decision and McCain Comments." It's a collection of links to some great information on this topic. We'd love for you to add Resources that would make this guide even better, including relevant links to your blog. You can find the guide here.
Have a minute or two to just check us out? We'd love to get your feedback. Confused by what we're trying to do? Excited about it? Any suggestions and feedback are welcome.
Feel free to email (or call) me directly if you have questions or comments.
Thanks,
Rhona
Rhona Berens
Co-Founder/VP Community Development
PeoplesMD, Inc.
323-363-3571
********
SOME REPEATED ARTICLES FROM TALINE, THESE POSTED SEPERATELY IN OUR BLOG.
York Region News Group
Better stop stalling, start helping autistic children
Letters to the Editor
Mar 16, 2008
Re: Autistic kids deserve better treatment, editorial, Feb. 21.
An important factor for children with autism is early diagnosis.
Services are required for prompt diagnosis and referral.
Resources must be sufficient and accessible to all families. Time is critical for these children.
A growing body of literature suggests early and intensive intervention may greatly enhance outcomes for children with autism.
Evidence-based research shows early specialized and appropriate intervention can help these children thrive in their families and our community.
We need our government to work in partnership with families to enable children with autism to reach their full potential.
We need to stop wasting time and instead invest in these children now.
Pat DiVecchia
Richmond Hill
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York Region News Group
Let's give help to those who need it most
Letters to the Editor
Mar 16, 2008
Re: Autistic kids deserve better treatment, editorial, Feb. 21.
I agree with your editorial on the subject of the Dalton McGuinty government’s poor treatment of children with autism and their families.
On Feb. 11, I attended proceedings at the Ontario Court of Appeal, where a three-judge panel was asked to decide if a class-action lawsuit could go ahead on behalf of autistic children seeking treatment within the Ontario public school system.
I was there to show my strong support for these parents whose own Liberal MPP had refused to attend.
This government’s continued discrimination against children with autism is a deplorable breach of trust. Children with other special needs receive education and therapy within the public school system, whereas autistic children in need of intensive behavioural intervention (IBI) and applied behaviour analysis (ABA) therapies are forced to seek treatment elsewhere.
Only two children in the entire province receive IBI therapy while attending school full-time.
Ontario is the only North American jurisdiction that does not deliver IBI treatment within the public education system.
A March 2007 memorandum written by the deputy minister of education stated the focus of a policy memorandum on autism spectrum disorders would be the use of ABA teaching practices and not IBI.
By not permitting IBI treatment within schools, the McGuinty government is forcing the parents of autistic children to choose between education and therapy.
Just like any other child in Ontario, autistic children are entitled to an education and do not deserve to be treated as second-class citizens.
We need a comprehensive educational strategy that addresses the unique needs of all Ontario children, including those with autism.
What we don’t need is a government that chooses political expediency over even-handed assistance to all Ontarians, notably to those needing it most and least able to stand up for themselves.
Peter Shurman
MPP, Thornhill
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Our lawyer for the lawsuit, David Baker, represented the Justin Clark case mentioned in this article 25 years ago. There's a quote from David in the article and also a couple of blurbs about autism.
Star
Disabled leave the shadows and their mark
After 25 years of activism, the emphasis is finally on ability – not disability
Mar 15, 2008
Helen Henderson
LIVING REPORTER
Justin Hines has had two songs on the charts from his debut album, a career poised to explode and a message to the world: Follow your passion.
He is the future of a culture emerging from the shadow, a generation of young people who transcend wheelchairs and labels. In the 25 years he has been on this planet, the pace of change has gone from eons to nanoseconds. For those who move or communicate or process information differently from the majority, progress takes many forms.
The spectrum of disability today stretches all the way from a mother accused of giving into frustration and drowning her 4-year-old autistic daughter to Ontario's latest lieutenant-governor, a man who has brought leg braces and an electric scooter into the chambers of power.
Twenty-five years ago, another young guy named Justin had to take on his parents in court to get permission to leave the institution he had lived in since age 2. Justin Clark used a wheelchair and did not communicate verbally. When he won the right to make his own decisions and moved into a house in Ottawa with three other people at age 20, he made history.
Where is the disability community today and where is it going? Hines' story could be the face of the future.
Justin Hines' mother started singing to him when it looked as if he wasn't going to make it in the first fragile years of his life.
Until he was 5, he and his mom, Carol, lived at what is now Bloorview Kids Rehab while his father and grandmother looked after his brother at their home in Unionville.
Through surgery after surgery to fuse bones that would otherwise repeatedly dislocate, "Justin never lost his smile," his mother says. Nor did he lose the music.
At age 6, enrolled in a mainstream school, Hines started singing lessons, partly to help with persistent breathing problems, partly because he says his grandmother believed in his voice.
"I was very nurtured," he says.
Eight years later, he won a contest to do the national anthem at a Raptors' game. Then Wal-Mart picked his haunting song "Wish You Well" to advertise its Walk for Miracles on television and his voice captivated viewers. His first album, Sides, came out last year.
Through high school, he says, it was his music career, as much as his disability, that made him feel different. These days, with music evocative of the best of the folk era ballads, he says: "My vision is to connect with as many people as possible."
Twenty-five years ago, a young musician in a wheelchair might have been little more than a curiosity, a performer barred from many venues by a shortage of ramps and an oversupply of closed minds. Today, Hines has toured from London to Dubai with no problem. Check it out at www.justinhines.com/downloads.php.
Of his record label, Orange, part of Universal Music Studios, he says: "They have been great: they haven't tried to exploit the disability or hide it."
Hines speaks to the world through the music he makes but many others with disabilities are communicating equally strong messages.
FINDING A VOICE
As more people with disabilities make their case, their message is being heard, advocates say.
"The rank and file and their families are speaking out – which is every disability advocate's dream and every government's nightmare," says legal activist David Lepofsky.
"Self advocacy means the individual voice is gaining credibility and power," adds Keith Powell, executive director of Community Living Ontario.
"We have a voice at the policy table," says Catherine Frazee, co- director of Ryerson University's school of disability studies. "It hasn't yet achieved results but we have a place of belonging and respect, a recognition of citizenship."
Public sympathy for Robert Latimer, who killed his 12-year-old daughter Tracy, who had cerebral palsy, "was a very profound wake-up call, bringing the disability community together," says Frazee.
Still, many advances in disability rights have not translated into practical changes. A decade ago, the Supreme Court ruled that hospitals across the country should provide free sign language interpretation for anyone who is deaf.
"It was a big court breakthrough but the impact has been weak because governments have never lived up to their obligations," says Lepofsky.
"In Europe and the U.S., they look at some of our wins in court as state of the art but in terms of actual access, we are still the pits," says David Baker, the lawyer who acted for Justin Clark.
Baker has continued to be a central player in some of the most significant disability rights cases, including a Supreme Court decision last year ordering VIA Rail to make its passenger trains wheelchair accessible.
POVERTY'S TOLL
Adults with disabilities who cannot find jobs must exist on support payments that top out at just over $900 a month. Most get much less.
Families caring for a child with a disability too often pay dearly, advocates note.
Most rely on one income because one parent becomes the full-time caregiver. They also face extra expenses for disability-related goods and services not covered by governments.
"Living on the Ontario Disability Support Program means living below the poverty level and poverty is a huge barrier," says Powell.
"The problems of poverty are becoming more and more entrenched," adds Frazee.
"Support is profoundly inadequate. We need a radical rethinking of social policy."
As Marie White, chair of the Council of Canadians with Disabilities, puts it: "Social policy is homeless in this government."
GAINING ALLIES
Bit by bit, the message is getting out.
"Our issues have gone mainstream," says Lepofsky. "Queen's Park politicians have started thinking of voters with disabilities. The fact that disability issues really have to be included in policy strategy proves that."
"There's a sea change in acknowledging disabilities," says Melanie Panitch, director of Ryerson's school of disability studies. "We're seeing activism through broad-based groups and coalitions looking at poverty."
Globally, last year's United Nations agreement on the rights and dignities of people with disabilities is "very significant" in adding weight to the movement," she adds.
STILL A LONG WAY TO GO
"We're stalled for lack of federal leadership," says Marcia Rioux, head of York University's school of critical disability studies, currently spending some time in Australia as a "Distinguished Fellow" at LaTrobe University in Melbourne.
Australia, by contrast, "is back on board," she says. "During the good times, when the economy was strong, we should have got further. There's no trickle-down for people with disabilities."
HOW TO GET THERE
"Attitudes will change only when people are seen out in the community," says motivational speaker Judith Snow, another leader in the move out of institutions.
"It took 12 years of fighting. "I was physically and emotionally dying in a nursing home," says Snow, who put together a "circle of friends" to help look out for her welfare.
Today, she laments moves to place young people in nursing homes where enough community support isn't available. As Lepofsky says: "Twenty-five years ago, we said, `The biggest problem is attitudes. We need to educate the public.'
"But once people raised awareness, they didn't know where to put it. Attitudes don't change behaviour. Behaviour changes attitudes. That's why you have to make people do things."
________________________________________
MILESTONES IN A QUARTER-CENTURY OF ACTIVISM
Twenty-five years in the disability movement – here are just a few of the many markers along the way:
• 1983: Justin Clark, 20, who has cerebral palsy, moves from the institution in which he has lived for 18 years to a house in Ottawa. The groundwork for the was laid the year before, after disability rights were included in the Constitution, when Clark won an important court battle allowing him to make his own decisions.
• 1985: Rick Hansen embarks on his epic Man In Motion 40,000-kilometre journey around the world, changing the way Canadians look at people in wheelchairs.
• 1987: Ontario promises to develop community living supports, saying it plans to close all large institutions for people with developmental disabilities in 25 years. (Twenty years later, with community resources still lacking, relatively young adults find themselves moved not to the community but to other institutions, such as nursing homes.)
• 1990: Gary Malkowsk becomes the first deaf person to address the Ontario Legislature as an elected MPP.
• 1993: At age 12, Tracy Latimer, who has cerebral palsy, is killed by her father. After a number of trials and appeals, Robert Latimer is convicted of murder. He begins his sentence in 2001 and is granted day parole in 2008.
• February 1994: Toronto's Metro Hall becomes home to the Terry Fox Hall of Fame, honouring people with physical disabilities who have made a difference.
• September 1994: Ontario premier Bob Rae's government passes employment equity legislation, fulfilling a prominent plank in the platform that catapulted his New Democratic Party to a surprise victory in the 1990 election.
• 1995: The Conservative government of premier Mike Harris repeals the Employment Equity Act.
• 1997: The Supreme Court Of Canada rules that all hospitals must provide free sign language interpretation services to deaf patients.
• 2001: The Ontario Human Rights Commission orders Famous Players to make three landmark theatres in Toronto wheelchair accessible. The ruling finds the lack of full access violates the rights of the complainants, including Toronto Star reporter Barbara Turnbull.
• 2003: 29 Ontario families launch a $100 million lawsuit against the province because their autistic children are being denied costly intensive behaviour therapy after age 6.
• June 2004: Winnipeg Conservative Steven Fletcher becomes the first quadriplegic to win a seat in the House of Commons.
• April 2005: The Ontario Superior Court rules the province violated the rights of children with autism by denying them intensive behaviour therapy on the basis of age. The province appeals the decision and wins in 2006.
• May 2005: The Ontario Court of Appeal strikes down part of a law that allows employers to deny severance packages to disabled workers who can no longer continue in their jobs. The court says the legislation violates the Charter rights of people with disabilities.
• June 2005: After a decade-long battle by blind lawyer David Lepofsky, the Ontario Human Rights Tribunal rules the TTC must order drivers to call out all stops on streetcars and buses. (It will be another two years before Lepofsky wins the same for subway stops.)
• June 2005: Queen's Park passes legislation ordering equal access for people with disabilities and promising tougher standards to make Ontario barrier-free in 20 years.
• November 2005: Sam Sullivan, a quadriplegic after a skiing accident, is elected mayor of Vancouver. (The next year he will capture world attention in Turin when he takes the flag for Vancouver's 2010 Olympics for a spin in his wheelchair.)
• November 2006: A proposed $700 million class-action lawsuit on behalf of thousands of families with severely disabled children collapses when a court rules Ontario has no legal duty to provide special funding for their treatment. The families allege they are forced to hand their children over to Children's Aid Societies to get the care and treatment they need.
• November 2006: More than 300 people from disability groups across the country gather on Parliament Hill to discuss a national action plan for building an inclusive and accessible Canada. The EndExclusion movement is born.
• December 2006: The provincial government uses closure to pass a bill that overhauls the Ontario Human Rights Commission. Starting in July 2008, those with human rights complaints must go directly to an adjudication tribunal rather than first taking their complaint to the commission to investigate.
• December 2006: Canada is among countries signing a landmark United Nations agreement protecting the rights of people with disabilities. It is expected to take effect this year.
• March 2007: The federal budget introduces a registered disability savings plan to help families plan for the future of children with disabilities.
• March 2007: After an epic seven-year battle, the Supreme Court orders VIA Rail to make passenger cars wheelchair accessible, underscoring the Charter rights of people with disabilities to barrier-free transportation.
• August 2007: Ontario pledges $12 million to provide special treatment and support for autistic children and their families.
• September 2007: David Onley, a former Citytv journalist, who had polio as a child and uses an electric scooter, becomes Lieutenant- Governor of Ontario.
• January 2008: The Canadian Transportation Agency rules that Canadians with severe disabilities who need to travel with a caregiver or require more than one seat on a plane will no longer face the charge of an extra fare from domestic airlines.
- With files from the Star library
-----------------------------------------------------------------------------------------------
York Region News Group
Treatment of autistic children shameful
Letters to the Editor
Mar 02, 2008
Re: Autistic kids deserve better treatment, editorial, Feb. 21.
I applaud the author of this article.
Children with autism deserve the same education and medical treatment as any other child; with or without special needs.
How dare the government put stipulations on the needs and welfare of these young children, shame on them.
Children with autism and their families deal with stresses and burdens just as other children and families with other special needs, so why wouldn’t the government treat them the same?
Who are they to say one child is entitled to public education and treatment and the other is not?
I agree that helping children with autism now, when they are young, will better their lives and in turn, will better our society in the future. What the government is doing is totally unacceptable.
Again and again, they are failing our young children who represent our future. It is time for a change. Wake up, Ontario, and join Alberta and British Columbia in covering the costs for these autistic children.
Rose Granato
Thornhill
--------------------------------------------------------------------------------------------
Mississauge News
By: Sharon Anderson
February 26, 2008
Dear Editor:
As the mother of a 15-year-old daughter with autism, I agree it's unfair children cannot have their therapists accompany them to school.
Through my Masters program in Disabiity Studies at York University, I have learned accommodations are allowed for every other disability.
For example, brain-injured students can have note-takers and extra time for tests, and ramps are provided for those in wheelchairs.
My daughter attended a special needs class at Ashgrove for Grade 3, and I know there are good teachers there. However, they are not trained in autism and behavior therapy, and one would think the board would welcome any help they could get.
I recently completed the course work in the graduate program in Autism and Behavioral Science and was told behavior therapists were in demand and would be quickly hired. However, school boards don't seem willing to spend their money to hire therapists to work with these children.
Let's hope the government earmarks some of the money they are promising to hire behavior therapists for autistic students.
************************* End of Taline’s mailout*********************
Nancy Morrison’s Email:
The W5 show last night was amazing. A huge thank you to the Fleischmann, DeWitt and Marinoiu families for sharing their children and their lives with Canadians.
At the end of the show, they advised that the link for the show will not be available for about a week due to copyright issues. I will share the link when it is available.
Below is a message from Tammy Starr about the show, and copies of the articles on the ctv.ca website:
Hello everyone,
I was very happy with the job W5 did tonight. I particularly like the
message that children get cut off for not doing well or for doing too
well!! The transition of Nicolas was extreme and another in your face
example of what years of non stop, intensive, high quality ABA can do
for our kids. The other family broke my heart --so grateful to them
for sharing their story.
As this was going forward, I positioned this to W5 as part one in a
two part series --I have been forwarding them all the benchmarks
emails, stories from parents who have had personal experiences with a
number of the psychologists on the panel who are quite dubious..
W5 is national in scope so they have to reach out beyond Ontario but
I know that the producer of this segment is pitching the second part
of this series for next year -- the political/legal/medical issues.
They are very intrigued by FEAT of BC's effort to launch a nationwide
campaingn to get ABA covered under medicare.
So... I urge you to email your feedback, support and personal stories
to Avis Favaro (reporter) and Elizabeth St. Philip (producer). This
would help them make their case to get the go ahead to do more.
Here are their email addresses
Avis Favaro afavaro@ctv.ca
Elizabeth St. Philip estphilip@ctv.ca
Thanks very much,
Tammy
--------------------------
from the CTV.ca Website about last nights show:
The Words Within
Updated Sat. Mar. 22 2008 6:57 PM ET
Kristen Yu, W-FIVE
It's a lifelong disorder with no known cause or cure.
Autism spectrum disorder affects approximately one in 150 children in North America - and the rates of diagnosis are steadily rising. Despite its prevalence, the disorder has long remained a mystery to all but those afflicted.
Part of the reason why medical experts still don't know how to prevent or treat it is because the disorder inhibits a person's ability to communicate or develop social relationships.
Now, a 13-year-old girl from Toronto is offering a rare glimpse into the secret world of autism and has become a symbol of hope for parents and families coping with an autistic child. Carly Fleischmann is unable to speak a single syllable. But two years ago, she defied the odds and started typing words with the help of specialized computer software.
Her inner voice speaks volumes. "I am an autistic girl who has learned to spell and can tell people to stop looking at me like I am helpless. I am cute, funny and I like to have fun," Carly writes.
Her father, Arthur Fleischmann, says that the family was stunned. "We realized inside was this intelligent articulate emotive person we had never met. It was just unbelievable because it opened up a whole new way of looking at her."
In another computer-generated communication, Carly provides unique insight into what it's like to live with the disorder: "It feels like my legs are on fire and a million ants are crawling up my arms,"
Carly's family insists she isn't a miracle case. They credit her intelligence, and years of Applied Behaviour Analysis (ABA) therapy, for her progress. ABA is an intensive, one-on-one treatment where therapists teach children through positive reinforcement and repetition.
The therapy can be an exhaustive process. Goals are broken down into the smallest task possible and taught over and over again. For instance, Carly is often rewarded with her favourite snacks when she types, but this exchange must be repeated each time to increase and maintain her behaviour.
In Carly's case, the therapy includes a team of 12 part-time therapists working in shifts, and amounts to about 40 hours a week. Her family strongly believes the program is partly what enabled her to share her story through the written word. Carly currently uses a word-recognition and speech-feedback software called WordQ, developed at Bloorview Kids Rehab in Toronto. (Then called the Bloorview MacMillan Children's Centre, the work at Bloorview was featured in the W-FIVE documentary Help and Hope in 2005.)
The software predicts the most likely words a child is trying to type after the first few letters are keyed in. It significantly speeds up the process and makes it much easier for children with learning disabilities to communicate in writing.
Nicole Walton-Allen, a psychologist and director of the Behaviour Institute in Ontario, runs one of Canada's largest private ABA programs. She says therapy can make a dramatic difference for autistic children.
For her, Carly's case points to the importance of such programs. "It supports the notion for me that you can't give up on these children because it is the cumulative effect of a lot of time and energy that have gone into her," she says.
Indeed, studies suggest that ABA may be the best form of treatment for children with autism. Research indicates that the therapy is effective in increasing behaviours and teaching new skills, particularly when implemented intensively and early in life.
But Carly is one of a fortunate few because her parents have funded all of her therapy -- which amounts to about 80 thousand dollars a year. For countless other parents across the country, it's simply not a feasible reality.
The vast majority of autistic children in Canada have little to no access to intensive therapy of any sort. Each province offers varying levels of treatment, and in most cases, families are put on long wait lists.
• Alberta: Funds up to $60,000 a year per child for ABA up to age eighteen
• British Columbia: Funds up to $20,000 a year up to age six
• Manitoba: Funds 36 hours of ABA per week up to age six, with five hours provided by the family
• New Brunswick: Funds 20 hours of intervention up to age five
• Newfoundland & Labrador: Funds up to $40,000 for 30 hours a week for two years up to age six
• Northwest Territories: Funds ABA for pre-school and school-aged children
• Nunavut: No program in place
• Nova Scotia: Funds 15 hours a week for six months, then 10 hours a week for a further six months. Only available for a year to randomly selected children up to six years of age.
• Ontario: Funds some ABA programs with a previous cut-off at age six. Now, parents complain that children are being cut off arbitrarily if they are doing poorly or doing too well
• Prince Edward Island: Funds up to $200 a week up to the age six
• Quebec: Funds 20 hours per week for ABA programs for ages two to five
• Saskatchewan: Funds up to 10 hours with very limited availability or access
• Yukon: Full coverage up to the age nineteen
Source: Autism Society of Canada
This has prompted organizations like the Families for Early Autism Treatment of BC (FEAT BC) to mobilize parents across the country. They are now launching a nation-wide campaign to elect MPs who will vote for legislation to include autism treatment under the health care system.
Many are drawing hope and inspiration from Carly's story. "I recently learned that dreams can come true," the 13-year-old writes. "If a child like me or their parents' dream is for them to communicate one day, anything is possible if you believe."
Due to copyright restrictions W-FIVE's video documentary is not currently available for on-line viewing. We will make it available as soon as possible.
-----------------------
And more from the website, sharing some of Carly's writings:
Carly's Writings
Updated Tue. Feb. 19 2008 9:19 AM ET
A 13-year-old named Carly Fleishmann, is challenging the conventional notions of autism. (Read her full story here.)
Here are some recent examples of her writing.
________________________________________
A recent conversation between Carly and her speech therapist:
(THERAPIST ASKING CARLY ABOUT WHY SHE MAKES MOTIONS/NOISES (SELF-STIMULATION))
WHY DO YOU NEED TO "STIM"?
Because if I don't it feels like my body is going to explode
It like when you shake a can of coke and open it just a little
All the coke finds its way out
WHY IS IT DIFFICULT TO STOP?
Its hard to explain. Howie (a therapist) told me all my stims and some of them is just because it help me to be calm
Some of my stims I can't help and really don't want to do but once it starts I can't stop my self
WHEN YOU ARE "UPSET", WHAT DO YOU DO OR NEED OTHERS TO DO TO CALM DOWN?
A lot of times I get upset because people don't understand what I want Even though I spell they still don't always understand
HAVE YOU EVER WRITTEN SOMETHING ON MSN AND SOMEONE READ IT THE WAY THEY WANTED TO READ IT NOT THE WAY YOU WROTE IT?
That happens to me all the time I think the best way to calm me down is to leave me alone Or rethink what I am saying
DOES MUSIC OR DEEP PRESSURE HELP?
I like listening to music it does make me feel good and I like to be squeezed but not usually when I am upset
HOW WOULD YOU DESCRIBE YOURSELF?
I am a autistic girl who has learned how to spell and can tell people to stop looking at me like I am helpless
I am cute funny and like to have fun
WHAT SORTS OF THINGS DO YOU LIKE TO DO FOR FUN?
I like to go on msn and I like to beat my brother at connect four
its so funny because he tries so hard
you should see his face when I win
I also like to listen to my dad read me stories I love to swim it help me control my body
________________________________________
A recent conversation between Carly and two of her autism therapists:
I do want to go to school but I cant Its not that I cant do the same work as allthe other kids
I went to school last year and even did well on test But I could not stay in class because of all my behaviors
I was hard for me to sit in the class without bang or screeming or standing I tride so hard to control it But it is to hard to do when I need to spell and do other things at the same time
My dad said that is why we see the doctor in the hospital she is trying lots of medication to see if she can help me
You say you to want to help me But how can you when you dont know what its like to be me You dont what it feels like when you cant sit still because your legs feel like they are on fire Or it feels like a hundred ants are crawling up your arms
How can you help me when you don't know
Dad and mom say that every one takes test to help let people no what level they are at But I have taken lots of test and I no what I can and can no do
You want me to be in aroom with three kids and concentrate on playing a game I probably cant do in the first place and at the same time try do control behaviors
You don't have to be smart to no what is going to happen I wont be able to play the game
I will scare the other kids and I will feel bad in side and you will make me feel this way for a test How does that help me Don't tell me it shows you what level I am at because you no that is going to happen
I am not really living in my house because of my behaviors I try so hard to stop them but it is to hard I cant walk by food without having a fight with my self
You want me to spell but it take a lot of concentration just to hit one letter on the keyboard
Donna said she cant help me if I don't do what she asks But since when did I need your help
I taught my self how to listen and how to control some of my behaviors and even spell all by my self I dont need your help If its only going to make things worse
How many kids have youever worked with that dont talk but can spell like me
I can do a lot of things that you dont even no about but a test wont get me to show them to you
It is so hard to be me And you would not even under stand I wish I could put you in my body just for one day so you can feel what its like
...
Allmy friends are double my age because its hard for me play with kids with out scaring them
I was asked why I like msn so much its because I can talk to people with out them seeing me hit the table or screaming
I want to clear something up just because I am hitting the table or screaming does not mean I am not reading or listening
I wish I could go to school on msn I could do the work but no one would have to be distracted by my behaviors And I could pay attention more to my work
...
My mom asked me a question that no one ever asks me What do I want
I want not to feel whats happening in my body I want to stay at home and not go to the farm I want to be like every other kid But I cant
Because I am carly
I cant sit for long times or even walk past an object with out having figths in my head I no I cant take that but my mind is fighting with me
I want to be able to go to a school with normal kids but not have to worry about them getting up set or scarred if I cant help myself and hit a table or scream
I want to be able to read a book by myself without having to tell my self to sit still and not close the book and follow each word and concentrate
I want to sit at a table with my mom and dad and worry about my body might do that I might not be able to control
I want to be able to talk to people and have them understand me the first time not respell over and over again Its to hard
...
I see lots of doctors but they all say the same thing they cant help me
Or they say she should take this medication but it never works
What I want is medication that is going to help me not the doctor
I want something that will help me sit
I want something that will put out the fire
I want something to make my feel mouth less silly
________________________________________
An email conversation between Carly and Globe and Mail reporter Carly Weeks
CAN YOU TELL ME WHAT SOME OF YOUR FAVORITE MEMORIES ARE FROM GROWING UP?
One things I enjoyed the most is listening to my dad read me stories in bed Some other memories I had was crawling in to my sisters bed at night after I woke up and she let me sleep with her she cuddled with me till I fell a sleep I am so lucky to have her
WHAT IS ONE OF THE HARDEST THINGS YOU'VE EVER HAD TO DO?
I think I would have to say controlling my behaviors It might not seem like I am at times but I try very hard to act appropriately It is so tough to do and people think it is easy because they don't know what is going on in my body They only know how easy it is for them Even doctors have told me that I am being silly but they don't get it If I could stop it I would But it is not like turning a switch off it does not work that way I know what is right and wrong but its like I have a fight with my brain over it
WHAT DO YOU THINK OTHER KIDS WITH AUTISM COULD LEARN BY HEARING ABOUT YOUR STORY AND THE PROGRESS YOU HAVE MADE?
To tell you the truth I don't know
I am a girl with autism that learned how to spell and is now able to tell people what I think Its not like I built a thousand houses in new Orleans or found a way for people who don't have food get food I think the only thing I can say is don't give up your inner voice will find its way out Mine did
WHAT ELSE CAN YOU TELL READERS ABOUT YOU?
I recently learned that dreams can come true and that if a child like me or their parents dream is for them to communicate one day That anything is possible if you believe
----------------------------------------------------------
Reminder for OAC Survey:
About a week and a half ago, I shared a link through Survey Monkey for OAC, a survey they have asked for members of the community to complete to assist in ensuring they are targetting the issue most important to all members of the autism community, and to have annonymous yet specific stories to share with Ministers when meeting with them, so their advocacy keeps each of us private as individuals, but expresses specific issues needing attention. You can and will remain totally annonymous, and any of the questions could be skipped if you wish if you are not comfortable with anything.
Thus far, about 1/3 of this list has responded, please take 10 minutes to fill out this survey if you haven't yet, your info will be collated with others to demonstrate our community concerns as a whole:
Here is the post again:
OAC Survery:
About 25% of the families on this list have responded thus far to the OAC survey, so if you haven't filled it out yet, please take 10 minutes to respond, the information gathered will be kept confidential, and if you are uncomfortable providing an answer to any particular question, just pass it over. They don't ask for names, and only month and year of birth for an approximate age reference for your child. You remain totally annonymous. The information gathered will be tabulated to refer to real life situations and percentage numbers when advocating for your needs with the various Ministries.
Here is the link to the autism survey:
http://www.surveymonkey.com/s.aspx?sm=Cv_2b_2fzrWYYiCMR33hKq0inw_3d_3d
And I have been asked to let everyone know that they have the option of receiving a free gift (flash cards) when they complete the survey!!!!!
-----------------------------------
The Autism Speaks Kick Off Luncheon is just two short weeks away, don't forget to rsvp your spot:
Autism Speaks Toronto Walk for Autism and Kick Off Luncheon Dates:
Remember to mark your calendars for the Toronto Walk Now for Autism hosted by Autism Speaks on Sunday, June 8th at Nathan Phillips Square. I am again a Walk Co Chair. Last year we had over 5,000 walkers and raised over $650,000. This year promises to be even bigger. And on the same date, the first walk in Alberta will be held in Edmonton. June 8th will be a huge day for Autism Speaks in Canada. You won't want to miss being a part of it at either location.
The Kick Off Luncheon for the Toronto Walk is scheduled for Sunday, April 6th at the Toronto Eaton Centre Marriott Hotel. The featured speaker will be Eileen Sabin, author of the Autism Acceptance Book. This Kick Off Luncheon is free admission and a lunch will be served. To register for the luncheon, please call Suzanne or Elaine at 1-888-362-6227. All are welcome however, registration is mandatory to ensure we have seating and meals for everyone. I look forward to seeing you there!!!
-----------------------------
This from the York Region papers, for all the listmates in the GTA with older kids, this may be a perfect resource for you:
DANI meets special needs
Members of the DANI Group get a chance to participate in a weekly basketball program, one of many activities provided to the young adults with special needs to help them stay active.
Vaughan
Mar 23, 2008 06:30 AM
Nurturing independence for young adults
By: David Fleischer
Members of the DANI Group live with everything from learning disabilities to autism, but co-founder Kathy Laszlo has no trouble seeing past the hurdles they have to overcome.
“They’re all beautiful people,” she says. “They all have abilities.”
The group was started by Ms Laszlo along with Susie Sokol.
Both had children who were moving into adulthood, with diminishing resources as they got older.
Ms Laszlo’s son Danny recently turned 22, and Ms Sokol’s daughter is 23.
While Danny was integrated with his peers, graduating from Thornhill Secondary School, government programs and other resources disappeared after high school, leaving young adults with little to rely upon.
“They turn 21 and all these doors are closed ... There are no community connections, there is no community life,” Ms Laszlo says.
The government programs that exist have long waiting lists and are not a part of their local geographical, religious or other communities, Ms Laszlo says.
As a result, depression and regression can occur, especially with aging parents unable to be involved as they once were in their children’s lives.
The DANI Group launched two years ago and now includes more than 65 families on its mailing list. The name pays tribute to Danny Laszlo, but also stands for “Developing and Nurturing Independence.”
“Lots of people in their 30s have nothing. They get used to sitting at home,” Ms Laszlo says.
The group ran a summer camp in 2006 and 2007, celebrate Jewish holidays, offer cooking classes, and run a basketball season which wrapped up this week.
The key is to keep everyone active and involved.
“This is really a lifestyle we’d like to provide our children with,” Ms Laszlo says.
Funding remains a challenge, as it does for many non-profits, but DANI opened an office in North York last month and Ms Laszlo has visions for the future.
She would like to recreate a model she saw in South Africa, building a cafe in Thornhill staffed by young adults with special needs.
On March 27, the DANI Group will host their second annual gala fundraiser in Toronto.
Last year’s event raised more than $65,000 for the group, and they hope to fill all 900 seats and best that number this year.
The main event will be a “Broadway North” show featuring seven performers. Among them is Justin Hines, a singer who was profiled in the Toronto Star last week.
A silent auction and cocktail reception round out the night.
The “Broadway North” gala is at the Toronto Centre for the Arts, 5040 Yonge St. on Thursday, March 27. For tickets and other information you can call 905-731-6606, e-mail danigala2008@gmail.com or visit www.dani-toronto.com
-------------------------------
And I pulled this from another list, an exceptionally great song from New Brunswick artists, that supports the Autism Society of New Brunswick:
Hi Everyone,
My name is BJ McKelvie. My son battles autism. Out of all this a song
has been birthed. I am one of the writers and singers of this
powerful song. Please let it touch you deep inside.
I'm In Here - The Anthem For Autism
It's a song from a personal place. I'm in Here will touch people's
hearts and help raise funds and awareness for autism. It's attracting
attention from listeners around the world.
The song is sung from the point of view of a child with autism
communicating to a loved one.
Please e-mail this video to everyone you know. Post it to every group
you can think of. Let's make this song a number one hit for our
children.
It has just been released across Canada to radio. PLEASE CALL your
local radio station and request "I'm In Here".
Below you will find several places to watch this moving video and
hear the epic song for autism: "I'm In Here".
You Tube:
http://www.youtube. com/watch? v=1hiQYurSJCQ
http://www.youtube. com/user/ McKelvie2008
Website:
http://www.iminhere .ca/home/ home.html
Contact Info
Email: bj@iminhere. ca
Website:www.iminhere. ca
Thank You so much
BJ McKelvie
************************** Nancy Morrison’s Email End*****************
Please Circulate & Post
________________________________________
It's time to all come together
to celebrate inclusion for all people!
________________________________________
A Celebration of all people
Friday August 15, 2008
Nathan Phillips Square
5pm-10pm
Free Admission
Live Entertainment * Display Booths* Interactive Activities* Great Event Prizes
________________________________________
Dear Colleague & Friends
On Friday August 15, 2008 we need your organization, residence and staff represented at City Mix 2008! This event is the first citywide and annual inclusion celebration of its kind. City Mix 2008 is hosted by The Mix Community Club in partnership with Community Living Toronto, The Community Head Injury Resource of Toronto (CHIRS), The City of Toronto and Variety Village. This event is a citywide extension of The Mix Community Club's monthly "Inclusion Awareness Concerts & Dances". Our purpose is threefold:
1. To Celebrate all people- SOCIAL EMPOWERMENT
2. To Cultivate greater acceptance of inclusion for people with disabilities- SOCIAL AWARENESS
3. To Connect different people and organizations together- SOCIAL DIVERSITY
We may be segregated by geography and distance but we don't have to be segregated anymore in our common efforts to bring inclusion, equal opportunity and empowerment for people with disabilities. City Mix 2008 is our joint opportunity to bring our voices together to bring mass awareness towards inclusion for all people.
People with disabilities are one of the last visible minority groups in our society that have experienced ongoing social discrimination, isolation and segregation. Together we can bring mass awareness and greater change to our common work and cause. Our vision and dream is that City Mix will become the Caribana or Gay Pride Parade of the disabled community. This can only happen if every organization is included in this joint celebration to promote our mutual cause of inclusion for all.
The success of this event depends on our willingness to work and come together for the greater good of people with disabilities everywhere! Just imagine the revolutionary and inspirational impact we will all make together as we join forces in celebrating social inclusion, diversity and empowerment for people of all ages and abilities.
I know you share our passion for supporting people with disabilities live meaningful lives within their community and that is why we are asking you to join us on Friday August 15, 2008 at Nathan Phillips Square from 5pm-10pm for the launch of what is being predicted to be the biggest "Inclusion Awareness Event in North America".
We have invited every organization in Ontario providing services/support to people with both physical and/or intellectual disabilities to join us at City Mix 2008! Every high school, college and unverisity within the GTA has also been invited to participate with us at City Mix 2008! We have also invited VIP guest, Mayor David Miller, Lieutenant Governor, David Onley, Premier Dalton McGuinty and Prime Minister Steven Harper to attend the launch of this groundbreaking inclusion celebration.
We are counting on your organization, residence and staff to join the celebration at City Mix 2008! I have attached a City Mix Participation Package along with some promo material for you to circulate and help advertise this event at your end.
Every participating organization will be publicly acknowledged on Friday August 15, 2008 and the organizations bringing the largest groups will win event prizes that include 3 free annual Mix Memberships for organizations within the GTA (Value of $100 to $300) and 1 free Mix Mobile Event (Value of $800 to $2400) for one organization outside the GTA. Please confirm your participation and support as soon as possible and please help us spread the word. Thank you so much for your support!
Sincerely,
Jaime Castro
President
The Mix Community Club
416-439-8813
www.mixcommunityclub.com
"Your integrated community & family social club"
"Together we will make a difference by bringing mass awareness towards inclusion for all people"
Come Celebrate North America's First
City Mix 2008
A celebration of all people
One People. One Celebration. One Voice
"Providing mass awareness towards social inclusion, diversity &
empowerment for people of all ages, abilities and associations"
An Inclusion Awareness Event
For the complete details please visit our City Mix 2008 webpage at:
http://www.mixcommunityclub.com/CityMix.html
The Mix Community Club
Head Office: 27 Griselda Crescent Scarborough ON M1G 3P5 Tel: 416-439-8813 E-mail: jointhemix@sympatico.ca
Your Integrated Community & Family Social Club
www.mixcommunityclub.com
PODCASTS ON AUTISM
FROM A LISTMATE
I thought you and your blog readership might be interested in these very informative podcasts on Autism and Autism Spectrum Disorders that I found online.
http://www.mic.mypodcast.coom
UPDATE FROM LIA
Hello Everyone!
It's Lia here, I'm sorry I haven't been able to contact all of you sooner. There has been a lot going on in our crazy house!
I would like to inform all of you that our new webpage (Which was generated for us by Jamie Castro from the Mix Community Club) is now up and running. The site is:
www.mixcommunityclub.com/ANSAW.html
Also, there are several up and coming important dates.
On April 14th - There will be a press conference held in the press gallery of Parliament Hill. I haven't contacted the lady in charge yet. I will be contacting her shortly in order to gather all the details. Her name is Jean Lewis, she's from Vancouver BC. I don't know if all of you have heard of her. My father will be flown into Ottawa for the press conference.
This upcoming March 21sy (Friday) CTV will be airing an excerpt on their 11 o'clock news as a lead-up to the documentary about ABA Therapy and Carly's Story. The documentary - Which will be shown on W-Five - will air on Saturday March 22nd at 7:00 pm. I would appreciate it if you told everyone that you could to watch it.
Jean Lewis is also organizing a rally in Toronto. I haven't obtained the exact date of this, but I believe that the assumed date is April 19th. If anyone has contacts to the Toronto Autism community, it would be much appreciated to get the word out ASAP as soon as I obtain the exact information and details of the rally to be held in Toronto.
There is also an upcoming event that is going to be hosted by the Mix Community Club in Toronto. It is called City Mix 2008. Below is a bit about them:
"The Mix Community Club is the only non-profit social club providing community
entertainment that is organized and produced by people with disabilities. We are
socially integrating the mainstream society with the disabled community through our
social events. We organize monthly "Inclusion Awareness Concerts and Dances"
by booking the best musicians, entertainers & bands in our community to perform at
The Mix. Besides our dynamic monthly events we also provide Mix Mobile Events,
Regional Event Support, Entertainment Services, Free Workshops & Casual Social
Programs. Children, teens, students, adults, families and seniors with and without
disabilities are all an important part of what makes up The Mix. Our motto is, "Social
Integration involves the whole community & it begins with you". Join us at The Mix!"
City Mix 2008 Will be held on Friday August 15th 2008. We have been asked to create an information table towards the cause for a National Autism Stategy, it would be much appreciated if you all could spread the word about this huge event.
There is so much more going on. I am currently working on a high-school advocacy presentation that will bring awareness to Toronto youth about Autism, the cause for a National Autism Strategy, as well as The Mix Community Club. The MCC has kindly granted us so many sources for our cause in Toronto, we are extremely grateful to them and Jamie Castro for all his help!
As well, within our own community, my father's walk has been promoted throughout my highschool. As well, it has been brought to the attention of our local police department. We are looking into further opportunities within our community, city, province, and country.
I would like to thank EVERYONE for being so patient with me since there has been a few issues lately going on. I hope this update helps everyone. As well, I would like to thank all of you for all your support again with my father's walk.
I am considering running to Ottawa myself next spring for the cause of a National Autism Strategy.
There is talk of a potential federal election, if there is one, we have to be prepared to make our cause for a National Autism Strategy a HUGE political issue.
As well, since the media is still hot on the topic, we should keep the fire burning. (At least that's my opinion, I'm just a teenager, you adults know so much more than I do).
My father sends his love and thanks to all of you and your families. We can never express in words or writing how grateful we are to all of you!
I will send an e-mail either this evening or tomorrow morning after I speak with Jean Lewis.
Please call me if you have any ideas, questions, concerns or anything else to speak about! The input is much appreciated and extremely necessary in order to make the fight for our cause STRONG!
I hope all of you have a fantastic long weekend! Don't work too hard.
Lia Marinoiu
ANSAW Representative
marinoiu_lia@sympatico.ca
416-412-7656
Additionally
Hello All,
I think I forgot to add in there that the W-Five documentary will have
a segment on Simon and our family. We were interviewed by them during theTuesday of the past March Break. That is why I am promoting the show!
Also I spoke with Jean Lewis, she is the Director of FEAT (Families for
Early Autism Treatment) of BC.
You can see here here in this youtube video:
http://www.youtube.com/watch?v=wl2IzR4xQ0w
I was explained that the itinerary would look something like this.
- Jean Lewis is flying in from BC to Ottawa on April 13th in order to
prepare for the next day's press conference held in the Parliament Hill
Press Gallery.
- My Dad flies into Ottawa early morning on the 14th of April in order
to attend and speak at the press conference which should start at 11
o'clock.
- During the afternoon, Jean is hoping to set up more media interviews
Over the course of the Afternoon.
- Over the following three days (April 15, 16, 17) My Father, Jean
Lewis and Harold Doherty will travel to the Perry Sound/Muskoka area. This is the riding of our current Health Minister Tony Clement. Over those three days,
they are planning to get that riding involved in the cause for a
National Autism Strategy (Getting the Media Involved, The Rotary Club, Town Meetings
etc.)
- From there, they will return to Toronto in order to meet with W-Five
and hopefully CBC National on the 18th of April.
- On Saturday April 19th , Jean is trying to organize a rally in either
the Area of London or Hamilton/Burlington. There is a riding within that
area (I forgot who's it is) That is also significant to our cause.
The above is my understanding of what is the actual breakdown of those
dates. If you have any questions regarding the rally or press
conference specifically, please contact Jean Lewis: jean.lewis@telus.net
I appreciate all of your help and effort into this! Thank you all so
much!
Lia Marinoiu
ANSAW Representative
marinoiu_lia@sympatico.ca
416-412-7656
Karen Kalpin here from What Do I Do?
In desperate need of Jr. Therapists.
Is it possible to place the following ad in your next e-news? I know you service more in the South Simcoe area, but I am having a very difficult time finding therapists.
If so, it would be greatly appreciated.
Jr. Therapists need to work in the Markham and Woodbridge areas, afternoons.
Minimum 3 years hands on ABA experience. Resume, reference required.
Video of hands on work preferred if consent is possible.
Willing to undergo training and participate in family workshops.
Contact:
Karen Kalpin
admin@whatdoido.ca
attach resumes please
From a Listmate
_______________________________________
From: http://www.cihr-irsc.gc.ca/e/35758.html
Institute of Neurosciences, Mental Health and Addiction (INMHA)
The Brain Brief: Vol. 5 No. 1 January 2008
National Autism Research Symposium
Toronto, November 8-9, 2007
CIHR had been tasked by the Hon. Tony Clement, Minister of Health, with organizing this event and CIHR-INMHA, with assistance from CIHR-IHDCYH, took the lead. The symposium was part of a series of initiatives on autism announced by Minister Clement in November 2006. The other commitments included exploring the establishment of a research chair focusing on effective treatment and intervention for autism spectrum disorders (ASDs); launching a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada; creating a dedicated page on the Health Canada web site focused on ASD; and designating the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the federal government level.
The symposium brought together 95 attendees including researchers, health professionals, educators, service providers, family members and persons with autism, as well as community organizations and government representatives. All the provinces and two territories (Northwest Territories and the Yukon) were represented. The goals of the symposium were to inform participants about the current state of knowledge on autism, to further the dissemination of ideas and to assist the research community in planning for research.
The opening evening session featured presentations from a person with autism (Daniel Share-Strom), a parent (Jennifer Overton) and a prominent researcher in the field (Dr. Susan Bryson, Dalhousie). On the second day, after introductory comments from the Health Minister, twelve leading Canadian researchers in the field of autism discussed the latest findings, with brief question and answer periods. Symposium participants then broke into six groups to discuss specific issues relevant to autism research. Each group suggested three key ideas to help inform research and presented these to the symposium as a whole. Every participant then had an opportunity to provide written feedback on these ideas and the symposium closed with some general comments from the floor.
Feedback from the symposium was very positive, with many participants appreciative of the opportunity to meet with individuals from different sectors and many expressing a wish to make this kind of meeting a regular event. For further information on this meeting, please contact Barb Beckett at {bbeckett@cihr-irsc.gc.ca}[mailto:bbeckett@cihr-irsc.gc.ca].
Dear delegate,
As you know I am the moderator of the Awares online autism conferences.
This is just a quick note to say that the latest issue of my 40-page
monthly international autism newsletter, Looking Up
(www.lookingupautism.org), is out now. Each month, we publish the most
recent research findings, news and views from the world of autism.
The latest issue includes:
LATEST RESEARCH FINDINGS BRING NEW HOPE:
Children with autism 'can understand other people through stereotypes'
– what Professor Uta Frith told Looking Up; PCBs 'are damaging the
brain in autism' – what Dr Isaac Pessah told Looking Up; Digestive
system 'link to autistic-type behaviour'; 'One-third of autistic
youngsters are prescribed psychotropic drugs'; Iranian study:
autistic children no more likely to have coeliac disease; Autism
research centre in Wales is pioneering 'world-class initiative';
'Fever can temporarily improve behaviour of autistic children'
A FRESH LOOK BACK AT IMFAR 2007: Contributions from Dr Patricia
Kuhl, Dr Geraldine Dawson, Dr Daniel Geschwind, Professor Anthony
Bailey, Dr Karen Dobkins, Dr Matthew State, Dr Thomas Insel, Dr
Evdokia Anagnostou, Dr Rita Cantor, and Professor Laurent Mottron.
New research into effect of gluten- and casein-free diet on autistic
children; Urine and blood tests 'might detect biological risk factors
for autism' – what Dr Xue Ming told Looking Up
AROUND THE GLOBE: Severely autistic boy honoured for saving
mother's life; Mother 'deliberately drowned autistic daughter in
bathtub'; How Taser stun guns were used on two autistic teenagers on
same day; Hollywood celebrities leap on board for autism; Autistic
teenager survives four days in wilderness 'without a scratch'; March
of hope in Paris; Cyprus Minster pledges better conditions;
DEFYING THE ODDS: Andrew's the lead – but he knows everyone else's
lines, as well; David proves shining example in the Philippines;
Bahrain's inspiring autistic memory champ
EDUCATION SPECIAL: Dramatic rise in IQ after intensive tutoring
AUTISM AT THE DENTIST'S … AND THE DOCTOR'S
EMPLOYMENT: Meet the Danish company for staff with autism
In the next few issues of LOOKING UP:
Adults with autism
The latest on possible immunological factors in autism
Autism and the arts - how the Japanese manga artist Keiko Tobe won
wide recognition for her work about an autistic boy and his parents
At first-hand: why we decided to take our autistic son to Costa Rica
for stem cell treatment
Ground-breaking Spanish epilepsy study
The latest on the vaccine debate
New serotonin findings
Autism and insurance
Meet the families with four and six - yes, six - autistic children
Asperger's syndrome: Peter the human satnav
Why golfer Ernie Els has revealed that his son has autism
Fragile X special - scientists make breakthrough, and first-hand
account of 'Our ray of sunshine'
The 'Night of Too Many Stars' - an 'overbooked' benefit for autism
Slblings - meet Paul and his 'quad-mates'
Why Thais are trying 'elephant therapy' for autism
Eating problems in autism
Autism in Cuba
BOOKS SPECIAL
You can find more details about how to obtain Looking Up by
going to the website (www.lookingupautism.org). You will also find a
new, improved index and search engine, full contents of all back
issues, as well as some free articles from previous editions (including
interviews with Dr Gary Mesibov, Dr Tony Attwood, Theo Peeters, Dr
Eric Courchesne, Professor Digby Tantam and Professor Christopher
Gillberg), and extracts from many other articles.
Please feel free to e-mail me if you need further information.
Best wishes,
Adam Feinstein
--
Adam Feinstein
http://www.lookingupautism.org
As requested Sharing with our Email List: Please reply to the email address below – by request.Hello,
I was wondering if during your years with the mailing list and working with families with children on the spectrum, have you ever encountered a family with a child diagnosed with autism and severe GI issues?
I have been asked to help a local (Ontario) family with a child recently diagnosed in the USA with Autistic Enterocolitis. This is a new diagnosis in the gastro field and attempts to label the unique GI issues that ASD children suffer with. I am looking for help from anyone in Canada who has a child who has such a diagnosis and likely has been diagnosed by either: Dr Arthur Krigsman (Austin, TX or New York) or Timothy Buie, MD (Boston).
Would you be able to forward this email to anyone whom you feel would have knowledge of possible doctors in Canada who can treat this condition? Families, associations, doctors etc who would know if anyone is treating this subgroup of autistic children who present with chronic and severe gastro issues ranging from: diareaha, constipation, bowel spasms, bowel ulcerations, severe inflammation and associated pain which then causes: sleep disturbances, self-injurious behaviours, OCD, Stimming and immune system issues.
My questions for these families would be:
Have you been able to find medical care for your child in Canada? Is there a pediatric gastroenterologist who acknowledges that ASD children suffer from their own unique brand of GI issues that have been labeled as "Autistic Enterocolitis" by Dr Arthur Krigsman, Dr Buie and Dr Andrew Wakefield (researcher).
Are you open to email discussions sharing your experiences with Canadian doctors treating your child with these issues? We cannot afford the long term costs related to treating and managing our 7 year olds serious GI issues in the USA. However, we have no idea where to find doctors who will continue the treatment program started by US doctors. Can you help us with the names of doctors and any info about your child's treatment?
Are children receiving medication such as 6-MP and Remicade as treatment for severe Chron's/Colitis combined with Autism in Canada?
Please respond to this email address: laurip@tbaytel.net Attn: Annette
Thank you,
Annette Logan, President
The Defeat Autism Together Association
Registered Charity in Canada
********
The name test indicates when more assessments may be needed
Baby 'name test' may spot autism
Routinely checking to see if babies can respond to their name at the age of one could help detect autism earlier than other tests, US experts believe.
The disorder is usually not diagnosed until a child is three or four, as the symptoms are variable.
However, parents of autistic children often say they have noticed early tell-tale behaviour.
The 'name test' described in Archives of Pediatrics and Adolescent Medicine appeared to aid earlier diagnosis.
Simple screen
The researchers studied two groups of infants - a healthy control group and a group of children deemed to be at higher than normal risk of autism because they all had older siblings with the condition.
At 12 months, all of the 46 infants in control group passed the name test, responding on the first or second call of their own name, while only 86% of the 101 'at risk' infants passed. The University of California Davis, Sacramento, team followed 46 of the 'at risk' infants and 25 of the controls up to their second birthday.
Three-quarters of the 'at risk' children who had failed the name test were found to have developmental problems at the age of two.
Of the children who were later diagnosed with autism, half had failed the name test at one year, and of those who were identified as having any type of developmental delay, 39% had failed it.
Aparna Nadig and colleagues had tried the name test on the children when they were only six months old, but found this was too young an age to get any meaningful result.
Routine check
They stressed that if the name test were to be used routinely, it should not be relied on solely to diagnose autism - it merely indicates that a child may need more assessments.
Equally, a child who fails the test will not necessarily have autism.
However, one who fails repeatedly and consistently has a high likelihood of some type of developmental abnormality and should be referred for further checks and possibly early intervention, they said.
Judith Gould of the National Autistic Society said there was good evidence that early intervention could help.
But she also cautioned: "Just because a baby does not respond to their name does not necessarily mean that he or she has autism.
"The diagnostic assessments for autism are thorough and wide-ranging, taking into account a variety of other factors such as eye contact, pointing and showing.
"If parents are concerned about their child's development, they should call the NAS helpline on 0845 070 4004 or seek the opinion of a medical professional."
*********
From a listmate
March 15, 2008 THE GUARDIAN (CHARLOTTETOWN) PAGE: A6 (EDITORIAL)
Autism services not so great after all
Editor:
Re: 'Families dealing with autism are in crisis: senator' (The Guardian, Feb. 23, 2008):
In a recent article you wrote about families dealing with autism, it was stated that in Alberta families can receive up to $60,000 per year up to the child being 18 years of age.
I am in Alberta and have two young children with autism and want to make it clear that you would be hard-pressed to find any child in Alberta getting the therapy they truly need.
The Alberta government provides a very beautiful act (Family Support for Children with Disabilities Act) that is full of holes and open to interpretation by many social workers. The act is failing our children as well as all the families that move from elsewhere to Alberta thinking they will get marvellous services for their children. My oldest son is four years old (autistic), severely delayed, can say around seven recognizable words, and was cut to 13 hours of therapy per week in September. He is now caught in the 'holes' of the FSCD Act and as we go through the very lengthy and costly appeal process, we will not get a decision until May 19, 2008 - nine months after the regression began. And let me tell you, that is just the beginning. We are joined by many, fighting all we can, and with all the energy we have left to get the services our children need. So, please, let families know it is truly a Canadian problem to get services for our children and that the Alberta FSCD Act is not all it says in black and white.
Allison Pike, Lethbridge, Alta
From my other group
THE STATE OF AUTISM IN THE STATE OF ILLINOIS
The Largest Autism Education Initiative for Government Officials Ever Undertaken
In 1992 there were five school-aged children in Illinois with autism. Today, there are 13,000.
More and more children are lost – more and more families overwhelmed – more and more money is spent - and less and less is accomplished. The best of intentions fail when outdated models drive the decision-making process.
The old way has not worked. It's time to change everything about autism in the State of Illinois.
We Are Proud To Announce
The First Annual
Autism in Action: Illinois Mayoral and Policymakers Partnership Program
The Autism in Action: Illinois Mayoral and Policymakers Partnership Program will educate and partner with mayors, state legislators, and other Illinois government officials on all things autism.
Covering a variety of topics, the Autism in Action Program provides answers to the most pressing questions state officials face -- answers that can be implemented immediately to help children and their families.
The Program is a series of best practices in medical treatment, education, law, model municipal and state programs, and an overview of how Federal programs impact Illinois.
Partnership Program Particulars
Invitations have been mailed to every mayor (1280), every state legislator (178) and many public health officials (50), in Illinois. In all, more than 1,500 officials are being invited.
This highly influential group of leaders has never had the opportunity to learn about autism from the leading experts in the field. And they have never had the opportunity to be exposed to, meet, and be inspired by so many passionate and intelligent parents.
Date, Time, and Location
The Partnership Programs will be held at the Westin O'Hare Hotel, in conjunction with Autism One 2008.
- The Program for mayors and other officials will be held Thursday, May 22, from 10:30 – 3:00.
- The Program for state legislators will be held Saturday, May 24, from 10:30 – 3:00.
Dream Team
Among those presenting will be: Martha Herbert; MD, PhD, Doreen Granpeesheh, PhD; Anju Usman, MD; Laura Cellini; Kristi Chrysler; and Jim Moody, Esq.
We Need Your Help
Please join us in helping to get your mayor and legislators to the program. We need you to call, write, and fax your mayor, state senators and representatives and ask them to attend.
Even if you are not from Illinois calling the officials will have a positive impact. Local officials will understand the importance of attending by the involvement of parents from around the country. As we plan to take the program national next year it's in the country's best interest for Illinois officials to help end the epidemic and become a national leader other states can look to and learn from.
Contact information for Illinois Mayors and Village Presidents is here.
Contact information for Illinois State Senators is here.
Contact information for Illinois State Representatives is here.
Talking Points
- Autism is treatable.
- One in 88 boys is diagnosed with autism.
- The Partnership Program will save Illinois money.
- The Program will help children recover.
- The Program covers best practices in medical treatment, education, law, model municipal and state programs, insurance, and an overview of how Federal programs impact Illinois.
- Recovered children will be on hand to meet officials.
- Congressmen Burton and Weldon are in favor of the Program.
- Illinois can become a leader in the fight against autism.
- Mayors can come to the Program while their police or fire chiefs attend First Responders Training. (Both First Responders and the Partnership Programs are free.)
- Attending officials will have the opportunity to meet the leaders in the field and network with other officials.
- Again, the Program will save children, families, and money.
RSVP
Invited state officials can RSVP here or email autisminaction @ autismone.org.
Thank you for helping in this important initiative. State-by-state we are going to end the epidemic and take back our children. We are starting in Illinois.
The Mayoral and Policymakers Partnership Program is supported by the Autism Society of America, A-CHAMP, Autism Research Institute, Generation Rescue, National Autism Association, SafeMinds, Schafer Autism Report, Talk About Curing Autism, and Unlocking Autism.
My Best,
Edmund Arranga
714.680.0792
earranga @ autismone.org
http://AutismOne. org
**********
Dundas Star News
Provincial government recognizes autistic children needs
By Kevin Werner
News
Mar 14, 2008
The provincial government has tripled the amount of funding for children with autism since the Liberals have been in office, the Ontario children and youth services minister said.
But advocates respond that more money is needed for therapies to relieve parents of the prohibitive cost of paying for the essential services.
“These therapies are definitely lacking in funding,” said Vicky Wilson-Sher, president of the Hamilton Wentworth chapter of Autism Ontario. “A lot of parents are trying to get the services their children need. It’s a tremendous financial burden.”
Ontario minister Deb Matthews, who attended a news conference March 7 at the Chedoke Presbyterian Church to announced $3.9 million this year for seasonal camps for children with autism, said any disagreement between parents of autism and the provincial government has been settled. She emphasized that for the first time the Ontario government is recognizing the struggles of parents with autism children are experience and the need for them to have a break.
“This is the kind of support families need,” she said. “(Parents) acknowledge we’ve tripled the funding for autism since we were elected. Almost tripled the number of kids getting Intensive Behavior Intervention (IBI) therapy. (But) it’s not just IBI, it’s about respite.”
Some parents last month attempted to revive a $1.2 billion class action lawsuit against the provincial government and school boards that they say seek to redress the failure of autism services in Ontario.
Last year Superior Court Justice Maurice Cullity struck down claims by families that alleged the defendants were negligent, and deliberately misused their offices and violated the children’s rights to security of person. Parents argue they are forced to choose between educating their children or providing them therapy.
Ms. Sher, who has a 19-year-old youth with autism, acknowledged providing her son with speech therapy was “expensive.”
She said there are children who are not accepted into IBI. Money is then needed, she said, to provide alternative therapies for those youths.
“It has been a struggle to afford the services you need,” said Ms. Sher.
Also, she said, there is not enough day care spaces for children with autism that allows the caregivers to teach them to behave appropriately.
“We are making small steps,” acknowledged Ms. Sher. “Every year we gain some ground.”
Studies point to about one in 165 children is affected by some form of autism, a complex neurological condition with no known cure.
Ms. Sher said she is unaware of how many children with autism live in Hamilton.
“We continually are searching, but a lot of families are not on our radar,” she said.
Ms. Matthews acknowledge the Ontario government doesn’t know how many autistic children are in the province.
“We are still in the early days of understanding autism and understanding support for autism,” said Ms. Matthews.
Meanwhile, the provincial money that was announced means helping the financial needs of the Hamilton Wentworth chapter of Autism Ontario’s camp programs. Across the province the provincial government estimate more than 500 children with autism took part in March Break camps.
About 16 children attended the March Break camp at Chedoke Presbyterian Church, said Ed Mahoney, who helps run the camp. The Hamilton Wentworth chapter received about $15,000 from the provincial money. It will go towards offsetting the cost of operating March Break and the popular Winner’s Circle summer camp the chapter offers.
“We started out funding our camps from the local chapter,” said Ms. Sher. “So this (funding) is a big step.”
Over 30 children take part in the summer camp experience, said Mr. Mahoney. Expenses, which the chapter has to pay for, is about $25,000, said Mr. Mahoney.
“The needs are many,” said Mr. Mahoney, who is a resource teacher at Mohawk College.
“This has been a watershed two years (for autism funding),” he said. “Once you start offering the services, you can’t retreat.”
.
End of Mailing.
