CREATIVE SUPPORTS FOR VULNERABLE CITIZENS
15 August 2005
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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This new bulletin is one outcome of the Guelph Spring Conference on Creative Supports held 29 April 2005, in Guelph, Ontario, Canada. It 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.

In organizing the Guelph Spring conference, we were moved by a desire to be positive and resourceful amid challenges--by the idea expressed in a Chinese proverb:  It is better to light a candle than to curse the darkness.

The bulletin is being sent first to email addresses on our Aroha Listserv. Why Aroha? Practically, it's good for a Listserv or website to have a short, distinctive codeword unlikely to be confused with any other. More importantly, Aroha, a Polynesian Maori word from Aotearoa/New Zealand, means the various qualities and values that are needed in a caring circle of friends. It can mean affection, respect, love, charity, compassion, empathy, concern, trust, pity, understanding and true friendship—all in active ways, not just ideas or feelings. 

You are receiving this bulletin because you attended the Guelph conference 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 gbloomfi@uoguelph.ca 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 

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.

Gerald & Elizabeth Bloomfield
Guelph, Ontario, Canada


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News from Guelph Spring Conference:
Creative Supports for Vulnerable Citizens

Believing that it is vital to build on the Guelph Spring Conference, we have been editing the audio and video recordings that were made of the conference sessions. We plan to produce and share:

1. Creative Supports for Vulnerable Citizens--a summary videotape/DVD of the highlights, professionally made, about 40 minutes in length

2. A book of edited text transcripts and illustrations of all seven conference sessions (approx 100 pages), together with information of the various projects that were displayed and partner organizations that are interested in co-operating with others to think about and implement creative supports.

Thanks to Kerry's Place Autism Services and the Community Mental Health Clinic in Guelph for grants to help us make these resources available at modest cost.

We’d like to know from you how interested you are in obtaining these resources. Please send an email message to gbloomfi@uoguelph.ca to tell us you want to know how to receive these resources.  

3. We are trying to continue the dynamics and interaction of the conference in launching this electronic bulletin on Creative Supports, which is being sent to the AROHA Listserv. We will publicize creative initiatives of other groups, pose questions for discussion, and announce new books, reports, websites and events.

4. We have also begun a series of smaller workshops on helpful strategies, so that people and families will feel encouraged to explore the best ways of supporting good lives for their vulnerable persons. These are being held in Guelph, to start with. The first was on Gentle Teaching on July 6. The second in on August 17, by the Special Needs Planning Group. On September 14, John Lord will lead a workshop on applying the principles of creative supports to planning person-directed lives with Individualized Funding--a sequel to his keynote address at the conference. Other possible topics include substitute and supported decision-making and how to fit planning for adulthood with Ontario Government regulations.

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NEWS FROM CREATIVE PARTNER ORGANIZATIONS


Families Matter Co-operative Inc.
Families Matter Co-operative of Ottawa announces its incorporation and readiness to welcome new members.
Its first meeting will be on September 27.
Click for overview, key messages and membership application form etc
The Co-op's First Directors are:
Marge McCabe, President
Krysia Pazdzior, Vice-president
John Toft, Secretary
Anne Toft, Treasurer
Audrey Bufton, Director at large.


Families for a Secure Future

invites applications for part-time Facilitator positions in Durham Region and Wellington County.
If you are interested, contact Judith McGill
See also full-day workshops in mid-October on creative housing options, under Announcements below.
 

Job Posting: Adult Social Group Leader
The Aspergers Society of Ontario is currently seeking an Adult Social Group Leader, to lead and coordinate a community-based social and recreational group in the Greater Toronto Area.  The mission of the Aspergers Society of Ontario is to provide education, resources and support to individuals with Asperger Syndrome, their families, educators, medical and mental health professionals, employers, government and the community, to enable AS individuals to realize their gifts and engage as fully contributing members of the community.
Click for more information


Spectrum Art Shows
Shannon has been working for Kerry's Place in Kingston and surrounding communities to raise Autism Spectrum Disorder Awareness.  She and her team are working to do this through several art shows entitled Spectrum Art. Some have already been held. All the artists participating in the Spectrum Art Show have some form of Autism Spectrum Disorder. The goal is to demonstrate to the public that individuals with a developmental disability have skills and talents and lives beyond ASD.

Details of the two remaining Spectrum Art Shows are:

Thursday August 18: 9:30am-9:00 pm at the Quinte Mall located at 390 North Front St., Belleville
Tuesday August 30: 5-7pm at the Kingston Military Family Resource Center - as part of the Fun in the Sun BBQ - located at 32 Lundy's Lane

For more information, contact:
Shannon spectrumart@gmail.com
Community Education and Awareness Coordinator
Kerry's Place Autism Services - Kingston, Summer 2005
613-384-7800 www.kerrysplace.org


Announcing ACES
Guelph Services for the Autistic and Waterloo-Wellington Autism Services are working towards our shared goals of good lives for our friends who are adults or older teens. During the past year, we have co-operated in encouraging ideas of an intentional community in our region. Last November, we held two workshop events, both facilitated professionally, to develop a vision, mission and sense of shared purpose. We decided not to rush out and buy a large property--even if we could afford to! Instead we are taking several small steps, to prove that we can work together constructively and that our young people can feel fulfilled and purposeful in various kinds of land-based activities. We are also developing a function as a centre of autism awareness, resources and expertise. See announcement sof forthcoming workshops on August 17 and September 14. We have adopted a name for our vision and current activities, and a logo.  Read more about ACES

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ANNOUNCEMENTS OF EVENTS

Please send submissions for this news bulletin 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, but URL links to more detailed information on other websites are welcome.


Wednesday, August 17 from 7pm, in Guelph
Workshop with Graeme Treeby of the Special Needs Planning Group
Key question: "How can families plan and act now so that the most resources possible are available to support the good life of our daughter/son after we can no longer do this personally?"
Likely to interest people in Guelph-Wellington, Waterloo Region and surrounding places. Offered free by Guelph Services for the Autistic, but space is limited. Please pre-register now, requesting an invitation and more information. Please send a message to Nancy Cherry <nancy.cherry@sympatico.ca>
The "Special Needs" Planning Group is made up of parents of people with disabilities.
Our focus is to assist families in preparing financial and estate plans that will ensure that their sons or daughters with a disability will enjoy a decent quality of life now and in the future. Our plans make use of Henson Trusts, Wills, Funding Mechanisms like family estates and life insurance programs and Life Plans which are designed to provide for our children after we are gone without affecting entitlement to ODSP benefits.
The SNPG does not charge any fees for our services, which means that everyone can take advantage of our knowledge and expertise no matter what their financial situation.  For further information, please visit our web based resource materials at  www.specialneedsplanning.ca


Thursday August 18: 9:30am-9:00 pm in Belleville
Spectrum Art Show
at the Quinte Mall located at 390 North Front St., Belleville
All the artists participating in the Spectrum Art Show have some form of Autism Spectrum Disorder. The goal is to demonstrate to the public that individuals with a developmental disability have skills and talents and lives beyond ASD.  For more information, contact: Shannon spectrumart@gmail.com


Tuesday August 30: 5-7pm in Kingston
Spectrum Art Show
Kingston Military Family Resource Center - as part of the Fun in the Sun BBQ - located at 32 Lundy's Lane
All the artists participating in the Spectrum Art Show have some form of Autism Spectrum Disorder. The goal is to demonstrate to the public that individuals with a developmental disability have skills and talents and lives beyond ASD.  For more information, contact: Shannon spectrumart@gmail.com


Wednesday, September 14 from 7pm, in Guelph
Workshop with John Lord on Making Citizenship a Reality
The Role of Person-Directed Planning and Individualized Funding
A WORKSHOP FOR PEOPLE WHO WANT TO MAKE IT HAPPEN
In recent years, citizenship has become a goal for people with disabilities. To be a citizen means to experience self-determination and community. This workshop is designed for people who want to build a good life and community connections with a vulnerable person. With individualized funding growing in importance, the role of facilitation and the importance of building a support plan will also be explored.
Workshop leader is John Lord, who was the keynote speaker at the recent Guelph Conference on Creative Supports. This workshop will build on his speech at that event and give people ample opportunity to ask questions, and work with others on issues of common concern.
John Lord is a researcher, consultant, and parent from Kitchener-Waterloo. Some of John's recent publications on individualized funding can be viewed at www.individualizedfunding.ca
Likely to interest people in Guelph-Wellington, Waterloo Region and surrounding places. The workshop is offered free, but space is limited. Please pre-register now, requesting an invitation and more information. Please send a message to Nancy Cherry nancy.cherry@sympatico.ca


September 9 - 10, 2005, in Nashua, New Hampshire
The Autism National Committee Conference

Honoring People with Autism
Brochure and Registration
For more conference information, please email Bccutler@aol.com
or call (781) 648-1813


Thursday September 22, 2005
, in North York

Official launch of Revel in the Light”
The story of Rebecca Beayni, produced by Masterworks Productions
Click for more information about premiere
Click for order form (either video or DVD)


September 27, 2005 at 7 00pm, in Ottawa
First general meeting of Families Matters Co-op in Board Room of Total Communication Environment (TCE), Unit #5, 203 Colonnade Road S.
Click for more details



October 15, in Pickering, all day
Families for a Secure Future and Durham Family Network offer
Creating a Home of One's Own
Morning of story telling, afternoon of small group discussions.
Click for more information and to register


October 16, in Erin, all day
Families for a Secure Future offers
Creating a Home of One's Own
Morning of story telling, afternoon of small group discussions.
Link for more information and how to register


October 18 and 19, 2005, at Orillia
Passports to Community Living
Foundations Conference hosted by Community Living Campbellford/Brighton
Click for flyer with contact details
Donna Winters
Foundations Outcomes Support Facilitator
Community Living Campbellford/Brighton
99 Centre Street, P.O. Box 414
Campbellford, Ontario
P - (705) 653-5161
Voicemail: (705) 653-1821 ext. 45
F - (705) 632-0756


October 20-23, 2005, in Toronto
Come to Your Senses....
From Theory & Research To Practice: Sensory Therapy & Disabilities
An International Conference for professionals, parents, caregivers & consumers
Presented by Muki Baum Association.
Program includes 37 presenters from 8 countries and a special presentation by Dr Oliver Sacks.

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ISSUES AND INITIATIVES


Allocate funds to address individual needs, says London resident and SSAHPC member
Despite the recent Ontario government $59 million dollar funding package for programs supporting people with intellectual disabilities, some families remain concerned about how the funds will be allocated.“I wish it was affecting us, but it’s not,” says Janice Strickland of London area resident, of the new $8.5 million dollar funding boost to the Special Services at Home (SSAH) program. (From the Family Net site).


Disability wait list vexes parents
For parents of young adults aging out of special education systems, that rite of passage can be terrifying. Without the structure and supervision that school provides, their sons and daughters can be left to their own devices. A story from Utah, where the Human Services Director is asking the Legislature for more flexibility to spread her $163 million disabled budget to more families, even if it means offering limited aid in the form of adult day care or job coaches.

Landmark study released regarding employment of Canadians with disabilities
Employers, community organizations, and people with disabilities have found common ground on how to address an unemployment rate for Canadians with disabilities that is 70% higher than the national average. This finding is presented in a landmark study, Neglected or Hidden. The study is based on a survey of 1,245 people with disabilities and interviews with over 100 employers and disability service organizations from across Canada.


Despite Better Training, Disabled Can't Find Work

After two decades... of special education, speech therapy, and training to make [them] employable, most disabled people still face a closed workplace door. A story from the Miami Herald.
Click to read article--free, but you need to register

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BOOKS, FILMS, WEBSITES AND OTHER RESOURCES

From Rollercoaster to Recovery: A guide for families navigating the mental health system in Wellington-Dufferin Counties is published by the Family Mental Health Network (based in Guelph), with support from a variety of organizations and companies in our community. Thanks to Jessie Baynham fopr this description:
"The 160-page guidebook covers everything from crisis, diagnosis, hospitalization, medications, alternative treatments, empployment & education, housing, legal and financial issues, recovery etc.  Both factual and practical information and tips from families and individuals who have experienced the mental health system are presented in an easy-to-read format.  Artwork in the book was done by individuals involved with Spark of Brilliance."
The cost for the guidebook is $12 including shipping. Click for order form and contact details


The Philia Dialogue on Caring Citizenship invites you to visit its newly designed website at http://www.philia.ca The Philia Dialogue is an initiative of PLAN Institute, which brings the
wisdom of the disability community to Philia's quest for a more inclusive society. You can requet a free subscription to the monthly e-zine @Philia. Share your ideas and stories at the website by clicking "Have Your Say" or send longer stories to haveyoursay@philia.ca


Read PLANFacts

The summer 2005 newsletter of Planned Lifetime Advocacy Network
an organization created to help families answer the question:
"What happens to our family members with disabilities when we die?"



The Canadian Index of Wellbeing
aims to provide Canadians with a clear, valid, and regular accounting of the things that matter to them and the genuine progress of
Canada. Read more


ABILITIES Magazine
The latest issue features Women and Wellness.


Disability WebLinks
Disability WebLinks is a resource providing access to over 1,500 federal, provincial and territorial government programs, information and services for people with disabilities in Canada.

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FROM THE FRONT LINES: 

CALLING FOR HELP AND SHARING EXPERIENCES


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 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 sena message to gbloomfi@uoguelph.ca


"Better Than Thou..."
A man with Asperger Syndrome describes how professional people often show a lack of empathy.
 
It seems, when looking back over the years, as though many professionals and administrative personnel that I have come in contact with, were fully determined to practice their own form of hierarchy at any cost--to prove that their way of seeing things is always a "better", "more efficient", "happier", ...way of looking at any situation than anyone else's.
 
Many times, when I try to tell a hurtful situation to someone in the medical or social services, I get the remark: "Why do you let something like that bother you?" I cannot get through to these "pros" that it is not a matter of "letting it" bother me; it is a very painful area of life, just like someone with rheumatoid arthritis (to someone who has never experienced it). They agree that rheumatoid arthritis is painful--anything "physical" like that can, according to them, be painful, but anything outside of the physical realm, ....well, as they see it, it's just a matter of not "letting it" cause one any problems. Even if I give the example of the pain of loss in a family where a member has been killed by a hit-and-run driver, they are willing to accept such pain, but say that it (the pain) is "real", as the family did, indeed suffer a "real" loss, but what I am going through in the painful situation that I described to them is "just in your head", and that I should "snap out of it, and get on with your life!"....
 
To me, that points to a complete lack of empathy on the part of those who feel this sense of "moral superiority". We autistics and aspies are always accused of lacking empathy towards others, when we are only searching for empathy from others, and, not being able to find it (or very rarely finding it), we are driven to withdraw from many contacts in life, as all we get is tons of advice on how to "spruce up" our act, and "think positive", when we are not looking for such advice whatsoever, but for an empathetic ear from someone who will share our feelings about life, even for the moment.
 
This is not to say that all aspies are in a "sad state" of affairs; far from it. Often, for example, when I want to explain that I have been able to experience sheer joy at just following the outline of a tree against the sky (while others around me are, for example, playing golf, swimming, or enjoying a carnival atmosphere at some park), I am told that it is "very inappropriate" to ignore what others around me are doing, and that it is incumbent on me to get rid of my "silly obsession" with trees, and start to engage in what others are doing. This only adds more woes to my life, as the sheer joy of following the silhouette of the tree against the sky is seen as a "disability" by these folks, when I am trying to find others who are willing to share in this joy, as I wind my way along the path of life.
 
These pros are very quick at using the attitude of "yes, ...but" in their conversations, such as: "Yes, you do find beauty in that image, but you are depriving yourself of contact with others by perpetuating such ideas as though the world should stop what it is doing, and come over to you, just so that you do not feel isolated!"

I tell them that I was not expecting "the world" to come over to me, at all, but just to find one other person in the crowd who also could find affirmation in that image that the rest of the crowd seem to be totally oblivious to, or just plain ignoring. Again these pros say that I am expecting too much in others as they are going to do what they are used to doing, and no one could be expected to change his or her life, even for the moment, just to "serve" me and my obsession with this "thing" that is nothing but a diversion away from others, an "escape" from the "reality" of personal contact with others.
 
When I ask why others cannot make personal contact with me, again they say that the onus is on "me" to change my ways, and that it is just "foolhardy" to expect others to change their ways just to "accommodate you and your clever ways at avoiding full integration in the social scenes around you!"
 
This seems to go on, and on, until I can no longer get the "guts" in me to remain in contact with that person, be it a professional (medical doctor, social worker, psychologist, counsellor), or an associate or even a "friend", and then the bridge that I thought would bring a way of bonding to others is abandonned, as I cannot take the "heat" of being reminded constantly that it is I who must change, and that the other person has no "need" to change, at all, even if the other person has severe problems in other areas of life. For example, one lost friend who was told all about AS, and outlined that friend's problem with panic attacks, said, one day, that there had to be a way of finding a "cure" for AS, when that same person had no interest, at all, in finding a way of getting help for their panic attacks.....
 
No wonder others have problems in understanding why persons (such as myself) on the autistic spectrum have difficulty in making or keeping "friends"--many (but not all) of these contacts are far, far too conditional in their approach, even if they claim to offer "unconditional love". They sure do not know how to practice what they preach!



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