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.
AUTISM IN THE
(Ont.) parents plead for funding
man held in detention centre (Ottawa)
unavailable or inadequate for families with special needs
A Rochester story that applies here as well.
Institute's art and music therapy help children with autism
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
and excerpts from Health section of New York Times.
OF EVENTS OR SPECIAL PROJECTS
of more events on OAARSN Bulletin
Board and Calendar, and our archive
of past OAARSN news bulletins.
submissions for this news bulletin or for the OAARSN Calendar and Bulletin
Board in plain text format by email to firstname.lastname@example.org
with "announcement" at the beginning of the subject line.
details of the following as BRIEFLY as possible:
Speakers and Topics of Event
and Location of Event
information to learn more about event
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
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
Autism Society Ontario's
Annual Autism Conference and General Meeting
Guest presenter and keynote speaker - Dr.
Click for Program
and registration form
For more information call 416-246-9592
June 21 & 22, in Vancouver
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
June 21 & June 22, 2003
Ryerson University, Toronto, Ontario
Open Windows Essential Training:
for report of similar conference in Ireland in March
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.
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.
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
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.
from the Special Services at Home Coalition
First Choice News
Day Fax to the Minister advocating more SSAH funds
print, complete and fax in the week preceding Father's Day on June 15.
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
Please let Stan Woronko know if
you can attend for all or part of Monday.
Stan Woronko for Peel Family Network
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
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.
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 email@example.com
FROM THE FRONT
HELP AND SHARING EXPERIENCES
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 firstname.lastname@example.org
for OAARSN. Or you might use the OAARSN Discussion Board, reached by pressing
the Communication bar on our main
Voices of FC Users:
Vision for Sharing the Self-Expression
of People who use Facilitated Communication
by Chris Pentzell whose brother Nick writes poetry with FC.
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?"
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