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
31 May 2003

NEW ON THE OAARSN WEBSITE

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. It's good to know such support for adults is possible in Ontario. See also the encouraging items of autism awareness from the UK, in our News below.

Sexual Issues in Adult Autism: Urgent Plea for Help
One of OAARSN's members appeals to the network for ideas and referrals that could help her son and family with a difficult issue at a critical time. Please respond with general advice that we could post. Or, if you have specific suggestions for this situation, let us know and we'll connect you.

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.
 

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. From one such family, 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

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AUTISM IN THE NEWS

Parents of autistic boy win court fight to treatment 
The parents of a six-year-old autistic boy have crossed what they believe is the final hurdle in a battle to prevent the Ontario government from denying their child financial support crucial to his treatment. 
Andrew Lowrey of Orillia was diagnosed with the serious and disabling neurobehavioural syndrome when he was 4  years old. The Ontario government funds intensive behavioural intervention (IBI) therapy for autistic children at a cost of about $50,000 per child per year. However, the funding ends when the child turns 6. Andrew's parents, David and Maureen Lowrey, challenged the funding cut-off as age discriminatory and contrary to the Canadian Charter of Rights and Freedoms. 

Manifesto for Autism launched
In Britain, a Manifesto for Autism has been launched as a blueprint for educational, health and welfare provision over the next ten years. Published by APPGA (the All Party Parliamentary Group on Autism) the Manifesto sets out four general principles and eleven specific objectives to
deliver better services and support for people with autism, to be achieved in the next ten years. The group believes that "agencies have a responsibility to work together to make a reality of social inclusion and person-centred planning for people with autism spectrum disorders" and will work to ensure that its vision is carried out by 2013.
Amongst its specific objectives are provision of: multi-agency diagnostic and assessment teams in every local area; appropriate early intervention programmes; training for all professionals and auxiliary staff in autism awareness; an entitlement for families to respite for a minimum of four weeks a year; access to leisure facilities and ‘meaningful’ activities and, for adults, support to find employment. There is also a pledge to make autism explicitly designated for a range of disability benefits and welfare support.

Volunteers sought in model befriending scheme
The National Autistic Society (NAS) is appealing for more volunteers from all walks of life [in Bristol and the surrounding area] to share interests with a local adult, child or family affected by Autism. "Whether you enjoy playing sport or board games, computers, going to the cinema or just watching TV, befriending is a practical and fun way to make a real difference to someone in your local community.

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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 

new announcements

Autism Society Ontario is delighted to announce the release of its second manual (in a series of five) on topics of interest to families of children with ASD in Ontario.
Children Diagnosed with Autism, What to Expect and Where to Get Help...
"...a complete and thorough description of Autism that covers everything you can do to help the preschooler with autism."
These manuals are part of a community effort which includes ASO volunteers, community partners, a grant provided by the Ontario Trillium Foundation and private donations. A flyer with further description and order form can also be found on the ASO website

previously posted, in brief:

Tuesday 3rd June 2003 in Kitchener
Annual General Meeting of Waterloo-Wellington Autism Services
More information

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

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?

Sexual Issues in Adult Autism: Urgent Plea for Help
One of OAARSN's members appeals to the network for ideas and referrals that could help her son and family with a difficult issues at a critical time. Please respond with general advice that we could post. Or, if you have specific suggestions for this situation, let us know and we'll connect you.

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.

SPECIAL SERVICES AT HOME IS 21 YEARS OLD! LET'S KEEP IT EFFECTIVE! 
This individualized form of funding is 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.

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HELPFUL RESOURCES

Visit the Autism Society website regularly for updates

Three ASO chapters maintain their own websites:
Autism Ottawa website includes some supports for adults as well
Simcoe Chapter of ASO 
York Region Chapter of ASO 
 

9-1-1 Protocol and Crisis Plans 
Nancy Cherry of Waterloo has begun a project called "9-1-1 Protocol and Crisis Plans" 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> 

Nancy is also working on contacts for the Ontario Association of Chiefs of Police and the OPP, and would appreciate any leads. 

NOTE THIS HELPFUL RESOURCE
Protecting the Child or Adult with Autism: Information for Parents and Other Caregivers 
WHAT YOU NEED TO KNOW---- 
WHAT YOU CAN DO---- 
if your loved one gets into these situations: 
Wanders away * Doesn't fear danger  * Upset by new situations * Public outbursts *  Can't I.D. self or explain what's wrong * Dangerous obsessions  * Crime victim * Crime suspect 
Click for guide produced by the South Carolina Autism Society--downloadable in PDF as leaflet. 
 

TRACKING DEVICES THAT COULD GIVE EVERYONE PEACE OF MIND 
as our children and adults explore their environs. 
(with thanks to Nancy Morrison)

Please comment if you have experience, or suggest other devices.
1. Digital Angel seems promising, but they have suspended taking orders due to demand at the moment, Also , like other devices, there is a delay in providing monitoring support in Canada. http://www.digitalangel.net/

2. IDs that individuals can wear on parts of the body, such as the ankle.
http://www.roadid.com/ankle_learnmore.asp

3. GPS PERSONAL LOCATOR FOR CHILDREN by Wherify 
http://www.wherifywireless.com/prod_watches.htm
"Wherify's GPS Personal Locator helps keep loved ones safe by combining Wherify's patented technology with the U.S. Department of Defense's multi-billion dollar Global Positioning System (GPS) satellites plus the largest 100% digital, nationwide PCS wireless network." 
A portion of your purchase/subscription price could be donated to Cure Autism Now.

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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.

IF I'D THEN KNOWN WHAT I KNOW NOW: 
Dr Lars Perner, who is mildly affected by Asperger's syndrome, discusses WHAT I HAVE LEARNED ABOUT LIFE WITH ASPERGER'S SYNDROME--AND WHAT STILL ELUDES ME
Presented at the annual meeting of the Autism Society of America, Indianapolis, Indiana, July 17-21, 2002
 

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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