SUPPORTS FOR VULNERABLE CITIZENS
12 November 2007
An electronic bulletin for adults who
are vulnerable because of
for their families, friends and supporters who care about them
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PERCEPTIONS AROUND THE WORLD
of our network recommends the latest newsletter by L'Arche Australia
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.
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
print one response below, by co-founders of the Families Matter Co-op
an Ontario parent do after she has tried everything?
writing to you because I am hoping to connect with parents with a
history of events, parents of young adults with autism (not
daughter is 19. We have fought both school boards for most of her life
avail….IPRCS, Appeals, Special Education Tribunal. We have gone to
have joined other parents in a lawsuit against the government.
filed a Human Rights Complaint. Still we have had no supports and no
My mother was diagnosed with Alzheimers in April and I have again gone
another hell because the situation here is just as dire for seniors
I feel like all three of us, my daughter, my mother and myself, are in
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
information about programs or services that may be coming available or
out there and more able to help us unless I go through them first.
this very difficult, traumatic to say the least.
I have been a good advocate for my child. I knew what she needed and I
relentless, yet the powers that be still won and they have
offer us nothing.
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
that you can use it and keep it) but there are no resources here
know of to support creative programs that would offer more than
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
out? Suggestions on how to find these parents would be
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 www.familiesmattercoop.ca 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 disabilities.
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: www.family-alliance.com.
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. firstname.lastname@example.org www.familiesmattercoop.ca for and about people with developmental disabilities
send submissions for
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details of the following as BRIEFLY as possible: Name
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URL Link for more information/registration Please
Send Files Or Brochure Attachments
November 14, 2007, , in Kitchener
Evening of Success Stories
about Community Participation Click for flyer
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 18, 2007, 10am-4pm,
in Newmarket Families for a Secure Future AGM Featuring the film My Life My
Choiceby 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
2007, in Ottawa End
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
November 24, 2007, , in Kitchener Planned
Lifetime Networks Fall 2007 Workshops PLANNED
LIFETIME NETWORKS: What are networks? How do they work? How do my
the focus person benefit? DISABILITY
SAVINGS PLANS – 2008?: What will it look like? How will my family and
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
28, 2007, 7.9pm, in Waterloo
All About Me: an advocacy
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
April 25-27, 2008 Family AllianceOntario is planning
its 2008 Conference in Eastern Ontario More
information will be forthcoming at http://family-alliance.com once
location has been established and the program completed.
27-29, 2008, in Detroit “Everyday
Conference of Center for Self-Determination
Edge in a City
with an Edge”
Marriott, RenaissanceCenter, Detroit,
lives, real freedom §Community
income asset & development §Aging
& freedom §Recovery
context of self-determination §Families
supported to best assist in developing self-determined lives §International
perspectives on these issues as well as discussions of what system
requirements are needed: what works and what interferes Click for
FROM THE FRONT LINES: CALLING
FOR HELP AND SHARING
EXPERIENCES We know
vulnerable adults and their families and caregivers are heroically
resources they have to achieve some successes with their challenges.
report remarkable progress. We invite you to share your challenges,
success stories, if you think others might help or benefit. If you wish, we will not
publish your name or email address. You may
message to firstname.lastname@example.org
MORE ABOUT THE CREATIVE
bulletin is for
who is vulnerable because of any kind of disability, and for their
friends and supporters. We can share dilemmas and difficulties as well
bright ideas and successes. There are announcements of events and
projects, discussions of issues and concerns, and links to useful
websites and other resources. Our focus is mainly on Ontario, but we
contacts as well.
bulletin because you attended the GuelphSpring
on Creative Supports in April
expressed interest in resources coming out of that conference. Or you
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