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
12 June 2003





ABOUT OAARSN NEWS
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.

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AUTISM IN THE NEWS

Sudbury (Ont.) parents plead for funding

Autistic man held in detention centre (Ottawa)

Insurance unavailable or inadequate for families with special needs
A Rochester story that applies here as well.

Wesley Institute's art and music therapy help children with autism

Listening to Barry Manilow helps autistic boy make a language breakthrough

'David Is David': Growing With an Autistic Brother
In a new book, The Ride Together: A Brother and Sister's Memoir of Autism in the Family, Paul and Judy Karasik tell the story of growing up in Chevy Chase, Md., with their parents and two brothers, Michael and David. David, the oldest, is autistic and mildly retarded, and the book follows him as he grows from infancy to middle age. (He is now in his 50's and lives in a group home near Washington.) Read review and excerpts from Health section of New York Times.

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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

events this week and next

June 13-15, 2003
Send a fax supporting SSAH in the week preceding Father's Day on June 15. See below under Issues and Advocacy.

June 16, 2003: by 11:30 am
Invitation to a press conference at Queen's Park, Toronto.  See below under Issues and Advocacy.

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. 
Click for 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
Open Windows Essential Training: BIOMEDICAL CONFERENCE
Click for report of similar conference in Ireland in March
www.autismcanada.org   Call (905)-332-4766 
 

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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. 
Fax campaign featured in Toronto Star column

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.
Information about this campaign is also posted on FamilyNet
 

June 16, 2003: all day, Toronto
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 and agenda
Please let Stan Woronko know if you can attend for all or part of Monday.
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

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.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
 

Sharing the Voices of FC Users:
Vision for Sharing the Self-Expression of People who use Facilitated Communication 
An invitation by Chris Pentzell whose brother Nick writes poetry with FC. 
 

Self-Advocate Invites Comments and Perceptions of Persons with Autism
Michelle Dawson of Montreal was diagnosed with autism as an adult. Though she had a blameless record, her employer (Canada Post) made conditions impossible for her to continue working when she revealed her diagnosis. 
As well as fighting her dismissal through the Human Rights Commission, Michelle is involved in several other forms of legal action. She is troubled by several tendencies in autism advocacy. One is the way children and adults with autism may be portrayed as monsters who have ruined their families' lives, and the use of terms like "scourge", "calamity" and "plague" to describe autism spectrum disorders. She deplores the way autism groups seem to condone the actions of parents or other caregivers who have been so desperate that they have killed their autistic children. She warns of some likely consequences of the rhetoric about "curing" and "eradicating" autism. She is all in favour of early intervention designed for individual children. But she fears that the advocacy of ABA because it is "medically necessary" might result in compulsory intervention for all people with autism with only one approach that would not suit all and would be inadequate for most. 
Michelle says: "For things to change, people with autism must be involved." She wants to reach Canadians who are looking at autism from a human rights point of view.  She wants to hear from people with autism about their views of ABA and of the current advocacy for ABA. She invites advocates for ABA to consider the question: "Why is it wrong to be autistic?"
 

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

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