CREATIVE SUPPORTS FOR VULNERABLE CITIZENS
 
12 April 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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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 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 

It is usually possible to learn more about each item by clicking on the live link (underlined).

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

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

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ANNOUNCEMENTS OF SOME EVENTS

April 14, 2007, 9:30am to noon, in Kitchener
Wills, Henson Trusts, Power of Attorney
Offered by Planned Lifetime Networks
Click on title for full details

April 21, 2007,  9:30am to noon, in Kitchener
Capacity, Guardianship and Decision Making
Offered by Planned Lifetime Networks
Click on title for more details


April 25, at 7pm, in Kitchener
Magnificent Moms: Amy Baskin on Keeping Strong, Sane and Connected

Kitchener Public Library
Please click on title for more



Saturday April 28, 2007
, 9:30 am–3:45 pm
Family Alliance Ontario Annual Conference 
Organizing Differently:  Circles and Not-for-profit Societies       
Location: McMaster University
Keynote Speaker: Susannah Joyce
Morning Presentation: "The Potential of Relationship: 3 Working Circles explain why they place their hope in people and why a circle of support is a good way to hold people together." Afternoon Presentation: “Andrew’s Aroha” by the Bloomfield family of Guelph.
Andrew's Aroha is a legally incorporated entity (microboard) to flow individualized funds to and sustain high quality of life of persons with disabilities, supported by their family and friends.
Cost: $30.00 per person/$40.00 per family
Register through Hamilton Family Network  Click for flyer with more details



May 4-5, 2007, in Mississauga
Connections 2007: Resource Fair for Persons with Disabilities
Click for full details



May 8, 2007, in Oakville
Halton Accessibility Showcase 2007

Resource Fair featuring programs and services for persons with special needs of all ages.
Click for full details


Saturday May 26, 2007
Stand Up For Mental Health - with "The Happy Neurotic" David Granier, and the Spark of Brilliance Comedy Players, will appear at The Guelph Youth Music Centre, in Guelph.
YOU WILL LAUGH, CRY, AND LEARN that folks with mental health issues
can become talented stand up comics with an important message! 
Please share the attached flyer with your friends, family and colleagues.
This is an event not to be missed! 
If you did not have the opportunity to purchase David's book "The Happy Neurotic" at the Bookshelf launch of Stand Up For Mental Health in March, there will be copies for sale!


May 23 – 27, 2007
, Sheraton Centre Toronto
2nd International Come To Your Senses Conference
Opening the Sensory World to Children & Adults with Complex Disabilities
Register now at http://www.sensoryconference.ca/

June 15 & 16, 2007
2007 Autism Spectrum Disorders Conference
Acceptance and Opportunities: See the Potential

A conference that will explore best practices and approaches for increasing quality of life, opportunities and independence. Save the Date! Friday, June 15 & Saturday, June 16, 2007 Toronto, Ontario
Member and Early Bird Registration discounts are available.
Keep an eye on www.autismontario.com for more information.

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BUDGET NEWS AND TAX TIME

The Governments of Canada and Ontario both produced budgets recently.
1. The federal budget included several new items to help persons with disabilities, including
--WITB Supplement for Persons With Disabilities

--Registered Disability Savings Plan

Please click to read the details

2. Ontario Disability Support Plan payments will increase by 2 per cent, the first increase for four years.


The Standing Senate Committee on Social Affairs, Science and Technology has released its report Pay Now or Pay Later: Autism Families in Crisis. (Click on title to reach this report in English).
The Committee heard from scores of expert witnesses between November 2006 and February 2007.  Its recommendations include that the federal government, together with provinces and territories, establish a comprehensive National ASD Strategy, with all stakeholders (including persons with autism) to be consulted, and also:

a. convene a federal/provincial/territorial conference to examine innovative funding arrangements for financing autism therapy
b. through Health Canada, in consultation with autistic individuals and other stake holders, implement a national public awareness campaign  to enhance knowledge and understanding of ASD
c. provide funding for the creation of an Autism Knowledge Exchange Centre
d. create an Autism Research Network and provide substantial new funding for this through the CIHR
e. work collaboratively with provinces to address human resource issues including training standards
f. in implementing measures of  financial security for children with severe disabilities,  ensure that autism qualifies as an eligible disability
g. study the implications of income splitting for ASD families and report by June 2008
h. through Health Canada, invite autistic individuals to attend  a symposium on ASD that is conducted with a clear set of goals and defined outcomes and based on consensus building.



"Special Needs" Planning Group offers Tax Tips - 2006 Taxation Year

Graeme Treeby of The Special Needs Planning Group has teamed up with Doug Cronin C.G.A., Community Living York South and The Ontario Federation for Cerebral Palsy to prepare and distribute a free tax information guide for people with disabilities and their families. The purpose of this guide is threefold:
1. To introduce people to the Disability Amount, Caregiver Amount and the T2201 Disability Tax Credit Certificate used to secure them. 
2. To share a FREE Process to Get Back Taxes That Should Never Have Paid in the first place and that people can now get back through the FREE Re-File Program.
3. To highlight many of the Tax Deductions, Credits and Benefits that are available to people with disabilities and their families.
Click on title to read whole guide.


Autism a lifelong burden, study shows

Andre Picard's column in The Globe and Mail points out that "because few adults with the disorder can work, the economic costs continue." He quotes a new study, published this week in the Archives of Pediatric & Adolescent Medicine, that examines how these costs are incurred throughout the lifetime of a person with autism. The study showed that direct medical costs were high in the first five years of life, at about $35,000 annually (all US dollars). That is when most behavioural therapies are offered. The indirect costs to parents, in large part due to lost income, are also quite high in the childhood and adolescent years, averaging $43,000 annually. But as a person with autism ages, the costs of non-medical care soars, and so do productivity losses. Costs for programs for autistic adults are paid out-of-pocket, with costs averaging $27,500 a year. Many people with the disorder do not work and their parents still need to provide care, factors that translate into economic losses averaging $52,000 annually, according to the research. The lead author is quoted as saying that costs of specialized adult care should awaken parents to the need for financial planning. "Parents of children with autism should seek financial counselling to help plan the transition into adulthood." Read full text of this article

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ONTARIO'S LONG-TERM CARE STRATEGY

For several months, we have reported great concern with Ontario's apparent policy of transferring harder-to-serve developmentally disabled people into long-term care nursing homes.

Helping Ontario's most vulnerable
An article in the Toronto Star (16 March 2007), concluded: "Not so long ago, people with intellectual disabilities were hidden behind the walls of institutions. Today, thanks to serious flaws in the system, the situation is really no better. We need to, and can, do much better than that. The opportunity is here, and the time is now."


Here are two letters, in response to a Star editorial:
Most vulnerable deserve better


Setting a standard for long-term care, April 03, 2007
Kudos to the Star for pointing out that seniors deserve care and dignity. At the same time, let's not forget that everyone, including those with a developmental disability, young and old alike, deserve care and dignity, as conveyed in Trish Crawford's hard-hitting article Nowhere else to go (Feb. 16), which generated dozens of letters from families "telling the Star loud and clear that nursing homes are not the answer for young adults with developmental disabilities."

It is now known that a huge number of people with developmental disabilities under 65, some as young as 18, are being warehoused in Ontario nursing homes.

It's time to stop using long-term care facilities as dumping grounds for those who do not belong there. The public has repeatedly voiced the need for the government to make greater investments in direct funding and more humane living options, such as supportive housing. Families were looking forward to the recent provincial budget to provide for this but, unfortunately, the budget was not clear in this regard.

Above all, it's about time that the Ontario ombudsman's mandate be expanded to include the power to investigate long-term care. Bill 92, which has passed its first reading in the Legislature, is intended to amend the Ombudsman Act with respect to hospitals and long-term care facilities. MPPs need to continue to hear from the voters that Bill 92 must become law (along with Bill 90 that would give the ombudsman the power to investigate school boards).

Our most vulnerable deserve no less.

Janis Jaffe-White, Co-ordinator, Toronto Family Network

Another letter addressed the need to improve the quality of care for frail seniors.

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BOOKS, WEBSITES AND OTHER RESOURCES
New book by member of the OAARSN network....
Help Him Make You Smile: The Development of Intersubjectivity in the Atypical Child
by Rita S. Eagle, PhD. Rowman & Littlefield Publishers.
Cloth 0-7657-0496-X / 978-0-7657-0496-2 Mar 28, 2007 336pp. List Price: $80.00
Paper 0-7657-0497-8 / 978-0-7657-0497-9 Mar 28, 2007 336pp. List Price: $34.95
15 % off online orders. Click on title to reach publishers.

Intersubjectivity refers to the motivation and capacity to connect and share one's own inner world with that of another person. This book addresses the questions: how does this precious human communication develop in infancy, and what can or should be done when it does not develop? The author presents a unique chronicle describing the day-by-day emergence of intersubjectivity in her infant son, born with neurodevelopmental disabilities. These observations are analyzed in the context of a critical review of theory and research about intersubjectivity in normal children and in children with atypical development. From both sources emerges a model for how intersubjectivity develops in the parent-infant interaction, and guidelines for how to intervene when it does not. While acknowledging the inroads that have been made in understanding this unique human capacity, the author points to the questions that remain to be addressed in future research. The book ends with a rare opportunity to follow the trajectory of her son's capacity for intersubjectivity over a period of more than thirty years. It is addressed to theorists and researchers; clinicians who work with infants and children with developmental disorders and their families; and parents who want to understand their children's development.


Deep inside the autism enigma
Reflecting the increased awareness of ASD, The Globe and Mail gave the centrefold pages of its weekend magazine on SaturdayApril 7 to a review by Marti Leimbach of two new books. Click on title to read this review.

Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker (Basic Books, 340 pages, $32.50).
Grinker, professor of anthropology and director of the George Washington Institute of Ethnographic Research, is interested in autism both professionally as well as personally. His daughter Isabel was diagnosed in 1994, and his warmth and compassion for autistic children and parents alike shines through this immensely readable and informative narrative that looks closely at how culture influences the ways we understand, classify and treat autistic-spectrum disorders.
Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism by Portia Iversen (Riverhead, 391 pages, $31). Portia Iversen argues that even "low functioning" autistic people are anything but retarded. Her introduction to the mystifying condition was through her child. Together with her husband, Jon Shestack, she established Cure Autism Now (CAN), an organization of scientists, parents and clinicians committed to the acceleration of research into the causes, prevention and treatment of autism. But this book's focus is on what she and others have learned from Tito Mukhopadhyay, a brilliant young man from India who is severely affected by autism, yet is an eloquent writer with an IQ of 185.

Kids with Asperger's Syndrome: Bullied on a Daily Basis
Text of the ABCNews show, with useful video links.


Read @philia: April 2007 Issue
Includes Nourishing Ideas, Good Conversation, Inspiring Action....


Spark of Brilliance based in Guelph

http://sparkofbrilliance.org/

Join its mailing list to receive richly varied details of creative opportunities for healing and recovery through the arts. Check out the new newsletter "SparkPlug"at 

http://sparkplugnewsletter.wordpress.com/



Families Matter Co-operative of Ottawa

http://www.familiesmattercoop.ca/

Check out the April newsletter and other recent postings.

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FROM THE FRONT LINES:
CALLING FOR HELP AND SHARING EXPERIENCES


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 gbloomfi@uoguelph.ca


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We welcome news, announcements, ideas and comments related to creative supports. Please send material to gbloomfi@uoguelph.ca

For a note about technical aspects of the Aroha Listserv, please click on http://www.ont-autism.uoguelph.ca/aroha-tech-info.html


Gerald & Elizabeth Bloomfield


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