12 November 2007
An electronic bulletin for adults who are vulnerable because of disability
and for their families, friends and supporters who care about them
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Please note that we (or OAARSN or the University of Guelph) do not necessarily endorse announcements or opinions that may be posted in this bulletin. We will make reasonable efforts to check sources.

More about this series of bulletins may be found at the end, including links to past bulletins.


One of our network recommends the latest newsletter by L'Arche Australia

An excerpt explores "the relationship between our lives as caregivers and the lives of the people we serve" with reference to Inclusion, Integration, Relationships and Empowerment.

Click on this link to read the whole newsletter.



We received the following appeal from the Ontario parent of a young adult, and published it in our bulletin a week ago. This prompted several responses. We print one response below, by co-founders of the Families Matter Co-op in Ottawa.

What does an Ontario parent do after she has tried everything?

I am writing to you because I am hoping to connect with parents with a similar history of events, parents of young adults with autism (not Aspergers).   

My daughter is 19. We have fought both school boards for most of her life to no avail….IPRCS, Appeals, Special Education Tribunal. We have gone to court. We have joined other parents in a lawsuit against the government. 

We have filed a Human Rights Complaint. Still we have had no supports and no services. 

My mother was diagnosed with Alzheimers in April and I have again gone through another hell because the situation here is just as dire for seniors with a disability.

I feel like all three of us, my daughter, my mother and myself, are in limbo.

Now that my daughter is an adult (over 18) I am being directed to an agency where we first started on this road fifteen years ago. I can’t even get information about programs or services that may be coming available or may be out there and more able to help us unless I go through them first. I find this very difficult, traumatic to say the least.

I have been a good advocate for my child. I knew what she needed and I was relentless, yet the powers that be still won and they have continued to offer us nothing.

I have tried to find an independent facilitator but have reached a dead end. Individualized funding is a great idea (if you can get the funding and show that you can use it and keep it) but there are no resources here that I know of to support creative programs that would offer more than babysitting for my daughter.   

We need a support group for families of young adults with autism 18 and over in this community but question is, where are the families? How do I find out? Suggestions on how to find these parents would be appreciated. 

A Response from Ottawa
As you know, the problems outlined by the exhausted parent are problems that
affect not only parents of people on the autism spectrum but parents of
people with other developmental disabilities such as Down syndrome. Parents
of people with developmental disabilities often live desperate, isolated
lives where they are at the whim of bureaucracies for the services they need
for their family members. Their life experiences mirror those of the mother
in the letter to your website.

In Ottawa, in the year 2003, five individuals met by chance and found their
situations were very much as described by that mother. These five people
determined that their voice, the family voice, would not be ignored any
longer, that resource information would not remain hidden any longer, and
that families would work together to find their own solutions to their
dilemmas. These five people, Marge McCabe, Krysia Pazdzior, the late Agnes
Wee, and John and Anne Toft, met for many more months and formed the
"Families Matter Co-operative", for and about people with developmental
disabilities as a means of addressing these problems.

After many more months, the Co-operative was incorporated in June of 2005 and
currently has 99 members and 46 associate members.

Families Matter has become a voice that is recognised in the Ottawa region
as one that speaks for families. Its website
provides people with information about services and facilities available in
the region for people with developmental disabilities. This is a searchable
data base. Families Matter has also formed partnerships with other
organisations to enhance a variety of opportunities for people with
developmental disabilities, for example in housing and employment.
Information on these ventures is also on the website.

Families Matter also provides current information to its members in a
monthly newsletter, and is very active in lobbying for change. The Families
Matter brief, "Dare to Care", challenges all levels of government to develop
a comprehensive system of supports for all people with developmental

One answer to the question, "What does an Ontario parent do after she has
tried everything?" is found in working with others in similar situations.
Five individuals in Ottawa came together facing the same question. In unity
and co-operation, they found some tentative answers to the question. Their
answer is a grass roots model that brings the isolated individuals together
in a common cause. Visit the Families Matter website to learn more about its
accomplishments since its incorporation.

It is an answer that other family groups have found, too. See for example
the website of Family Alliance Ontario at:

There is a great deal that families can do when they work together. Through
Families Matter, I can advocate for all people with developmental
disabilities. I am not alone in working to improve the overall situation for
all such people. The work of Families matter brings benefits to all,
including my adult, autistic son.
Yours truly,
John Toft, Secretary, Families Matter co-operative Inc.
for and about people with developmental disabilities


Please send submissions for this news bulletin or for the OAARSN Calendar and Bulletin Board in plain text format by email to 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
 URL Link for more information/registration 

 Please Do Not Send Files Or Brochure Attachments


November 14, 2007, 7-9 pm, in Kitchener
Evening of Success Stories about Community Participation
Click for flyer

November 15-16, 2007, in Trenton
Advocates for Community Education (A.C.E.)
4th Annual Self-Advocates Conference
Keynote Speaker: Dave Hingsburger
Click for full details
Contact: Angela Clarke, Outcome Support Facilitator
phone 613.475.5557
fax   613.475.9854


November 17, 2007 in Toronto
Integration Action for Inclusion conference
"Putting Inclusion into Action"
A conference for people who care about inclusion in school and community
Harbourfront Community Centre
Click for brochure

November 17, 2007, 9:30-11:30, in Kitchener
Planned Lifetime Networks Fall 2007 Workshops
Speaker: Peter Brennan of Amy, Appleby and Brennan
Click for flyer with more details; pre-registration necessary and donations welcome

November 18, 2007, 10am-4pm, in Newmarket
Families for a Secure Future AGM
Featuring the film My Life My Choice
by Inclusion Press
that profiles seven adults with disabilities living Person Directed lives

and the work of the Windsor Essex Brokerage for Personal Supports
Click for information flyer

November 22, 2007, in Ottawa
End Exclusion! Building an Inclusive and Accessible Canada
"There are no insurmountable obstacles to prevent Canada from taking a World Leadership Role in providing disabled persons with the practical means for greater independence."Obstacles, 1981
We want to create an INCLUSIVE and ACCESSIBLE Canada so everyone can belong and participate!
Click for the website

November 24, 2007, 9:30-11:30 am, in Kitchener
Planned Lifetime Networks Fall 2007 Workshops
PLANNED LIFETIME NETWORKS: What are networks? How do they work? How do my family and the focus person benefit? 
DISABILITY SAVINGS PLANS – 2008?: What will it look like? How will my family and the focus person benefit? When will it be available?
PASSPORT: What is it? How do I access it for my focus person?
Speakers:  A Panel of Family Members, Focus Persons and Community Members
Click for flyer with more details; pre-registration necessary and donations welcome

November 28, 2007, 7.9pm, in Waterloo
All About Me: an advocacy seminar/workshop
by Beverly Grant, parent of three special needs children (the youngest with autism)
Click for flyer for more about who will benefit and what you will learn
Please pre-register; $5 fee at the door for materials
Seminar will be offered again on April 23, 2008

Looking 2008

April 25-27, 2008
Family Alliance Ontario is planning its 2008 Conference in Eastern Ontario
More information will be forthcoming at once the location has been established and the program completed.

May 27-29, 2008, in Detroit
“Everyday Freedoms”
International Conference of Center for Self-Determination
”Cutting Edge in a City with an Edge”
Detroit Marriott, Renaissance Center, Detroit, USA

Conference Highlights:
§                            Discussions about meaningful lives, real freedom
§                            Community membership, income asset & development
§                            Aging with dignity & freedom
§                            Recovery in the context of self-determination
§                            Families truly supported to best assist in developing self-determined lives
§                            International perspectives on these issues as well as discussions of what system change requirements are needed: what works and what interferes
Click for more information




We know that some vulnerable 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 to share your challenges, dreams and 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


This bulletin is for everyone who is vulnerable because of any kind of disability, and for their families, friends and supporters. We can share dilemmas and difficulties as well as bright ideas and successes. There are announcements of events and special projects, discussions of issues and concerns, and links to useful books, websites and other resources. Our focus is mainly on Ontario, but we have wider contacts as well.

You are receiving this bulletin because you attended the Guelph Spring Conference on Creative Supports in April 2005 or expressed interest in resources coming out of that conference. Or you may have been a member of our PLN Listserv, for people concerned with Personal Support Networks. Or someone on the List has suggested that you could be interested. We hope you will continue on the Aroha Listserv, recommend it to others, and contribute news and ideas that we may share. Please click for a technical note on how to maintain your membership of the Aroha Listserv and how to unsubscribe if you wish.

Please send news, announcements and comments to We welcome news items, announcements of events, new information, discussion questions and comments, and accounts of experience.

The Aroha Listserv and Creative Supports Bulletin are linked to the OAARSN website (Ontario Adult Autism Research & Support Network) which is hosted at the University of Guelph. Click to reach OAARSN's main page

Previous Creative Supports bulletins may be found by clicking on the following links:

October 18, 2007
October 5, 2007
September 19, 2007
August 30, 2007
August 20, 2007
August 9, 2007
July 14, 2007
June 26, 2007
May 10, 2007
April 18, 2007
April 12, 2007
March 22, 2007
March 3, 2007
February 20, 2007
January 30, 2007
January 18, 2007
December 26, 2006
November 20, 2006
November 7, 2006
November 1, 2006
October 7, 2006
July 2, 2006
June 28, 2006
May 20, 2006
May 14, 2006
April 2, 2006
March 20, 2006
February 16, 2006
February 10, 2006
February 4, 2006
January 18, 2006
November 12, 2005
October 10, 2005
September 18, 2005
August 15, 2005
August 1, 2005
July 6, 2005 

Gerald & Elizabeth Bloomfield
Guelph, Ontario, Canada
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