ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN
OAARSN offers a rich and expanding collection of up-to-date information and communication tools that can put you in touch with others. We can all benefit from the opportunities for mutual support, encouragement and information sharing. We hope that OAARSN's efforts to promote positive approaches and best practices in supporting adults with autism can help all who live and work on the front lines. Click on OAARSN's main page

See our archive of past OAARSN news bulletins.

Send news, announcements and comments to gbloomfi@uoguelph.ca We welcome news items, announcements of autism events, new information, discussion questions and comments, and accounts of experience.

 

NEWS BULLETIN
6 June 2003

NEW ON THE OAARSN WEBSITE
 

ABOUT OAARSN NEWS
With the onset of summer, many people's thoughts turn to vacations. However, we remember that there is no appropriate respite for many families who live with autism. We will try our best to keep up autism awareness through this website and the flow of weekly bulletins during the summer. 

Note the wealth of news, announcements and other links in our weekly OAARSN News Bulletins which are archived on our website. Click for the list of OAARSN bulletins to the end of March, and note the following recent links:
April 7, 2003
April 14, 2003
April 21, 2003
April 28, 2003
May 5, 2003
May 12, 2003
May 19, 2003
May 26, 2003
May 31, 2003

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AUTISM IN THE NEWS

Parents of kids with Asperger syndrome want Ontario to fund treatment
A story arising from the national conference last weekend of the Asperger's Society of Ontario. 

Asperger's Syndrome
A news story on KidsHealth.org 

Recovering from autism
Going beyond the stereotype to therapies that work
By JOANNE RICHARD, SPECIAL TO THE TORONTO SUN

Is there any research going on to find out if the MMR vaccine is linked to autism?
An article from the National Institutes on Health about what it is doing to look into the claims about MMR vaccines and autism

Vaccination and autoimmune disease: What is the evidence?
A review essay in The Lancet.

Collaborative Programs of Excellence in Autism
An account of the five-year, $42 million, international network of ten Collaborative Programs of Excellence in Autism (CPEA) to unravel the mysteries of autism, started in 1997 by the National Institute of Child Health and Human Development. 

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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS

See details of more events on OAARSN Bulletin Board and Calendar, and our archive of past OAARSN news bulletins.

Please send submissions for this news bulletin or for the OAARSN Calendar and Bulletin Board in plain text format by email to ebloomfi@uoguelph.ca with "announcement" at the beginning of the subject line.
Please provide details of the following as BRIEFLY as possible: 
 Name of Event
 Main Speakers and Topics of Event 
 Date of Event 
 City and Location of Event 
 Contact information to learn more about event 
 Please Do Not Send Files Or Brochure Attachments

Now back online, including its fine monthly calendar of autism-related events throughout the world (but especially the US): Schafer Autism Report:http://home.sprynet.com/~schafer/ or email: subs@doitnow.com
 

new announcements

June 10, in Waterloo, starting 6:30 pm
Clarica Developing Financial Planning for Special Needs population:
Clarica is interested in developing financial products, protocols and systems, specially tailored to meet the concerns and needs of people with Autism and other special needs. Familis are invited to share their ideas and concerns at a meeting in Waterloo at Clarica Building,  94 Bridgeport Rd East, 2nd floor (Sobeys plaza). Meeting convened by Rod Murphy, phone 885-4000 ext 276, or on his cell - 498-0641, or email Rodney.Murphy@Clarica.com This is a message from Rod:
"The main focus of this meeting is to gather information. Clarica has unlimited resources that we can access. All we would like to do is to meet some families who can enlighten us on the concerns and hurdles that families face today.This will be a very informal meeting. We do not have any hidden agendas that will come to surface when you arrive. Brainstorming is our focus. You tell us your concerns as Parents/Advocates and we will write them down. With your help we can develop a framework together. At this point it is hard for us to talk about a specific need without input from the source-- Families. Our agenda is very simple, you can do the talking and we will do the writing. From my point of view, I would love to be able to help families with concerns about the present and the future. If we can help in any way, then this will be a success. I do think we can strive to become pioneers when it comes to providing services to families with special needs. So let's work together to achieve something special."
Please contact Rod if you plan to attend, or email Nancy Miles at peter-nancy-miles@sympatico.ca
Lack of interest will result in cancellation.
 

June 16, 2003, from 11:30 am in Toronto: 
Invitation to a Press Conference at Queen's Park
Issues are individualized funding, SSAH, citizenship, choices, options, adequate
funding, our involvement as key stakeholders
Organized by the Peel Family Network, this event and the issues are relevant for all people with special needs in Ontario.
Please see more details below under ISSUES AND ADVOCACY. RSVP to Stan Woronko 
 

previously posted, in brief:

Week of June 9-15, in all parts of Ontario
Click to reach PDF files about SSAH and the campaign to send a huge number of Father's Day Faxes to the Minister.
Message from the Special Services at Home Coalition
SSAH: First Choice News
Father's Day Fax to the Minister advocating more SSAH funds
Please download, print, complete and fax in the week preceding Father's Day on June 15.

June 10, 2003, in Hamilton
Canadian Psychological Association and Ontario Psychological Association present Community Speaker Series on "Some ABCs of attention, learning and behavior in children" with Dr Tom Brown and Dr Susan Bryson. Free admission.Click for flyer

June 12 & 13, 2003 in Toronto (at Ryerson University)
Results Based Management and Evaluation Workshop
presented by Harry Cummings and Associates Inc.(HCA) of Guelph.
For workshop information  Visit the HCS website

Friday, June 20 and Saturday, June 21, 2003 in Cambridge, Ontario.
Autism Society Ontario's Annual Autism Conference and General Meeting
Guest presenter and keynote  speaker - Dr. Kathleen Quill. 
Program and registration form
For more information call 416-246-9592 or mail@autismsociety.on.ca

June 21 & 22, in Vancouver
ANCA Foundation, 4th annual conference
Discovering the autistic transformation: 
Empowering the autistic community
For autistic teens & adults and families, professionals and paraprofessionals involved in raising, supporting and educating autistic individuals.
Visit the ANCA website

June 21 & June 22, 2003 
Ryerson University, Toronto, Ontario
BIOMEDICAL CONFERENCE
Click for report of similar conference in Ireland in March
Open Windows Essential Training: 
www.autismcanada.org   Call (905)-332-4766 

Autreat 2003, June 29-July 2, 2003, 
in the Adirondack region of New York State.
Autreat is a retreat-style conference run by Autism Network International. 
Click for more information and contacts

July 4-6, 2003, in Kingston Ontario
5th Canadian Fragile X Syndrome and Autism Spectrum Disorders Conference
Click for Conference flyer

July-August 2003
Cycle for Autism updated website 
Please note the new material on autism research objectives 
Email: cycleforautism@sympatico.caTel:905-832-3959

October 17 and 18, 2003 in Edmonton, Alberta
Keys to the Treasure Chest 
4th annual conference featuring Carol Gray and Dr Tony Attwood

November 21-22, 2003 in Montreal, QC
4th International Medical Conference on Autism in Quebec
Autism 2003 - Understand, Act and Heal
Autism 2003 Tel: 514-524-6114 Fax: 514-524-6420 Email: atedm@bellnet.ca
 

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ISSUES AND ADVOCACY

See also: Funding Issues--in OAARSN Discussion Boards and Topics. Press the Communications bar on OAARSN’s main page then choose Discussion Area
 

SPECIAL SERVICES AT HOME IS 21 YEARS OLD! LET'S KEEP IT EFFECTIVE! 
Send a fax in the week preceding Father's Day on June 15.

SSAH is an individualized form of funding that has been a popular and effective way of providing some flexible help to families who support their children and adults with special needs. At last count, the Ontario Ministry of Community, Family, and Children's  Services spent 6 per cent of its $1 billion budget to provide 18,500 families with an average $3,570/year.

  • But there are more than 1,000 families on the waiting list
  • Last year more than $2 million (that has been allocated to SSAH) was diverted to other purposes. 
  • Many families who support adults at home don't know they could get SSAH dollars
  • Families who live with autism spectrum disorders should apply for increased funding
The SSAH Coalition invites you to urge the Ministry to increase SSAH $$$$ and thus the ability of families to cope and improve their children's and adults' quality of life. Even if your family is doing all right, please speak up for the families, children and adults who are not getting enough help yet. 

Click to reach PDF files about SSAH and the campaign to send a huge number of Father's Day Faxes to the Minister.
Message from the Special Services at Home Coalition
SSAH: First Choice News
Father's Day Fax to the Minister advocating more SSAH funds
please download, print, complete and fax in the week preceding Father's Day on June 15.
 

June 16, 2003: by 11:30 am
Invitation to a press conference at Queen's Park, Toronto
Issues are individualized funding, SSAH, citizenship, choices, options, adequate
funding, our involvement as key stakeholders
Organized by the Peel Family Network, this event and the issues are relevant for all people with special needs in Ontario. Read on for the background: 
On October 7, 2002, a group of families went to Queen's Park and held a press conference to complain about the way the Ministry of Community, Family and Children's Services treats people with disabilities. They asked for choices and
options (individualized funding) and recognition as the most important stakeholders.

As a result of the publicity and pressure, they had the opportunity to meet with Minister Brenda Elliott who gave them an encouraging words of response. Many of you wrote wonderful positive letters to the Minister, encouraging her to listen to families and to open the door to individualized funding.

Now, eight months later, we find ourselves no further ahead. No concrete results. The specific families that were brought to Brenda Elliott's attention on October 7 are still stuck. The bureaucracy has failed them. The people who
went to the trouble of writing personal letters to Brenda received disappointing standard replies in a form letter.

This is why the families are returning to Queen's Park on Monday June 16. We will hold a press conference at 11:30 a.m.  and we hope that the Liberal Party will raise a question on our behalf in the Legislature Question Period later
that day. We want to reinforce our message and to make the government accountable.

We are encouraging many families to turn out for this event to demonstrate our determination and our solidarity. I hope that we can attract some families from regions far beyond the greater Toronto area. This is important to show that the issues are the same all over Ontario, and that families are united across the province. Also, if other family networks should want to officially join in sponsoring the event, that would be very powerful.

Bring your family members along, and plan for a picnic lunch on the grounds at Queen's Park. Tell your friends. The more people come, the stronger the message. This will be also an opportunity to celebrate our vision and our kinship.

If anyone is willing and available to participate in planning and organizing (to be done by email), please let me know. There is not much time left, but we know what to do! We want to make sure we cover the issues that are important to YOU!

Even though Peel Family Network booked the event, I want to emphasize that it's about people all over Ontario. We suffer the same system, and we share the same issues. All for one, and one for all. Help to make this event a great success.

I will post more information in the days ahead. Please RSVP -- let us know if you plan to come or not.
Stan Woronko for Peel Family Network sworonko@sympatico.ca
 

Model Support Worker's Role Description
This is a real role description for support workers with adults in one Ontario region. One of our members reports that it does work. What are the equivalent job descriptions in your region?
 

FUNDING ISSUES FOR SUPPORT OF ADULT WHO MOVES WITHIN ONTARIO
Several families and advocates have contacted us about the bureaucratic injustices they have suffered in trying to obtain some funding support for their adults with autism when they moved from one place to another within Ontario or when they moved into Ontario from another province. Click for one family's experience during the past 18 months.

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HELPFUL RESOURCES

Learning Disabilities & the Law:  A Canadian Resource
Legal Action related to Learning Disabilities
After reaching ASC website, look for heading "Legal Action in Canada"

9-1-l Protocol and Crisis Plans
Nancy Cherry of Waterloo has begun a project with the hope of accomplishing several things: 
1. developing a template for calling 9-1-1 should the primary caregiver be unable to make the call 
2. registering with the police so that when a 9-1-1 call is placed there is an electronic alert displayed that gives background information 
3. registering with the local hospital or crisis clinic to avoid the intake procedure when dealing with an out-of-control individual who has special needs and may be non-verbal 
4. finding a tracking device to monitor children who regularly wander (and adults who want to develop more independence of movement) 

Nancy wants to reach individuals, families and other primary caregivers who have stories to tell about handling crises of the kinds suggested in the goals above. She writes: "Family Net has very kindly offered to help with this project. We need to interview families over the phone who have had experience with safety issues. We would like their personal stories as well as the kinds of changes they would like to see happen in the province. Success stories interest us as well. If any families have put special measures in place, we would like to hear how they made arrangements."

If you are willing to have a phone interview or otherwise share your experience, please contact Nancy at phone (519) 884-3309 or email Nancy Cherry nancy.cherry@sympatico.ca

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FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING EXPERIENCES

News about adults with autism is usually negative. OAARSN receives many appeals for advice on where to turn for help--with diagnosis and assessment, advocacy, planning for the future, alternatives to approaches that are not working. There are virtually no obvious sources of help for isolated adults with autism and their caregivers.

We know that some adults and their families and caregivers are heroically using what resources they have to achieve some successes with their challenges. Some can report remarkable progress. We invite you, as an adult or caregiver living with autism, to share your problems and your success stories, if you think others might help or benefit.

Appeal for Help with Extreme Anxiety
"I wish to look into counselling for my daughter who is nearly 19 years old. She has extreme anxiety that is debilitating for her. She is medicated, but we have to be careful of side effects. She is becoming more in tune with her feelings and is starting to articulate how she is feeling when she becomes anxious. However, I believe she needs help to understand the impact her anxiety has on her, and on the people around her. She won't listen to me -- I'm just her mom after all!  Do you have any information/contacts that I could pursue? We live in southern Ontario, east of the Greater Toronto Area, and I hope that there might be someone who could help us who lives somewhere fairly close by." 
If you have suggestions, please reply first to OAARSN 

Life Insurance Coverage
Our son was denied life insurance coverage because they said that autistic people are a danger to themselves and so have a shorter life expectancy.  We are thinking of filing a claim against [the insurance company] for discrimination. Do you have any statistics on life expectancy, or resources that could help us fight this?
 

If you wish, we will not publish your name or email address. You may send a message to ebloomfi@uoguelph.ca for OAARSN. Or you might use the OAARSN Discussion Board, reached by pressing the Communication bar on our main page

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