PLANNED LIFETIME NETWORKS BULLETIN
3 March 2003


PLN LIST is an email bulletin begun in 2001 for exchanging news and views about strategies of building and maintaining personal support networks for people with disabilities, and associated issues. PLN List came into being at the time Planned Lifetime Networks was incorporated in the Waterloo-Wellington region of southern Ontario. Members of the List are now distributed in communities across Canada, with some in other countries too.

PLN LIST is a free service maintained by Elizabeth & Gerald Bloomfield and hosted by the University of Guelph with technical support by Peter McCaskell. We welcome items of news and comment which should be sent to ebloomfi@uoguelph.ca. They will be grouped in batches for posting from time to time. Frequency depends on the volume of material submited and the urgency of announcing meetings or recommending advocacy.

a. If you wish to join or leave the PLN List, please send a request including your first name and last name and your email address, to petermc@uoguelph.ca with "PLN" in the subject area.

b. When you have ideas and announcements to share with others, please send a message to ebloomfi@uoguelph.ca  with "PLN" in the subject area.

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ONLINE ON THE OAARSN WEBSITE 

PLN Bulletin is now posted on the OAARSN website, so that past issues are indexed and accessible through Internet searches. While OAARSN is devoted to adult autism issues, some parts of the website are of more general interest to folks concerned about inclusion, self-determination and a good life for all who live with disabilities.

See the OAARSN Bulletin Board: 
1. General News of Disabilities and Inclusion: 
Ontario News of Disabilities and Inclusion
News of Disabilities and Inclusion in the Rest of Canada
International News of Disabilities and Inclusion 

2. Announcements of Events

3.  AROHA ENTITIES FOR PERSONAL EMPOWERMENT AND SUPPORT

4. Perspectives on Abilities and Inclusion (documents of personal experience)

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NEWS FROM PLAN AND ITS AFFILIATES

News from Planned Lifetime Networks (Waterloo-Wellington-Oxford) 

PLN (WWO) is a non-profit organization incorporated September 11, 2000, with charitable status from January 1, 2001. Most of its members are in the Region of Waterloo, in the cities of Kitchener, Waterloo and Cambridge.
"Our core values are:
-that friends form the foundation of a good life, that families should direct the planning the the future of their relatives with disabilities, 
-that our relatives with disabiliteis contrinute to their society through their gifts and capacities, 
-and that independnence from government for our direct operations makes us effective and accountable to our member families. 
"PLN helps to establish and maintain lifelong personal support networks around those who are socially isolated due to disabling conditions, using paid community connectors to maintain the health of the networks. We also offer future planning consultations, parent support and mentoring, and opublic education through workshops and information meetings."

PLN now has a new brochure, and a new phone number, postal address and email address. It has begun a newsletter and plans several workshops this spring.

PLN Workshops:
1. Seven Steps to a Good Life, on three Saturday mornings--May10, May 24 and June 7--probably at the University of Waterloo (location still to be confirmed).
2. Capacity Assessment, Wills and Trusts, Supported Decision-Making--three presentations and question period on a Saturday morning in late April. Date and place still to be confirmed.
3. Social Network Creation training--of people interested in being community connectors, parents, friend and professionals

Contact PLN:
Planned Lifetime Networks (Waterloo-Wellington-Oxford)
5-240 Erb Street West, Suite 306
Waterloo, Ontario, N2L 6K6
phone (519) 746-1188
email plnwwo@sympatico.ca

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News from Vickie Cammack, 
PLAN Institute for Citizenship and Disability
Suite 260 - 3665 Kingsway
Vancouver, B.C. V5R 5W2
Tel: 604 439-9566
Fax: 604 439-7001
http://www.PLAN.ca (best browsed with Internet Explorer rather than Netscape)

1. John Ralston Saul, patron of PLAN and its Canadian affiliates, recently made a speech in Kitchener in which he used PLAN concepts and principles and introduced himself as its patron. He has committed to deliver two lectures for Philia (likely to be in Halifax and in Calgary).

2. Mark Kingswell presented a lecture for Philia in Vancouver.  150 people came to hear him in the evening and explored the application of Philia the next day. He was joined by B.C.'s Minister of Child and Family Development and social visionary Milton Wong.  There are many wonderful things to report about this event but for me the defining moment was when this renowned philosopher took on the question of what is a person.  After his deliberations he determined that "we become a person when we put ourselves in the presence of others." This certainly fits with our experience at PLAN, doesn't it?  There is a reading from Mark's book The World We Want in  PLAN's operations manual.

3. Training update: leadership training is filling up and we have two facilitator training sessions set for the spring. The first is in Kelowna where 35 people are registered.  According to Barb it filled easily and OLNA will generate some revenue from the event.  Next facilitator training is set for Edmonton in May.  We are co-sponsoring a course with the University of Calgary and Douglas College on Individualized funding.  We will be presenting the seven steps in Yellowknife and Amsterdam this spring.  We have two future planning scholarship series in the works with two local associations for community living.  Nicole and I are presenting at the Quebec provincial association in May.  We are gearing up for a facilitator institute in mid September. 

4. PLAN has begun working with Jeff Dobbin from Toronto on a CD-ROM based around A Good Life. Work continues with Force Four and the National Film Board on the documentary Weaving the Ties. The NFB is planning on mounting an interactive web site around the production.  It promises to be a fabulous tool for all of us.  The site could be up by the fall and the film finished the following year.

5. PLAN Institute is beginning a two month process to develop a business and communication plan development.  This feels like a coming of age for the Institute.  The interest in our collective work abounds.  Our challenge is to find ways to respond to this interest in ways that result in lasting and wide spread change. it's critical  we define exactly how we are making a difference.  I have decided that in the end there is only one outcome that counts in our work: the number of networks we have built and families who have peace of mind as result.  All other activities support this outcome.  I hope we can all focus our efforts on facilitating relationships.  They really are what counts!

PLAN offers workshops on various topics, including: 

  • Safe and Secure-Seven Steps to  a Personal Future Plan for People with Disabilities: 
  • Will and Estate Planning:
  • Beyond Services: Redefining the role of Professionals and Service Providers:
  • Appreciating Families: A Basis for Collaboration: 
  • Supporting Good Decision Making: 
  • Accumulating & Maximizing Your Wealth: 
  • Trusts for all Occasions: 
  • Home is Where the Heart is: 
  • Weaving the Ties That Bind: 
  • Taxation and Disability: 
  • Will and Estate Planning for Single Parents: 
  • Will & Estate Planning for Younger Families: 
  • Representation Agreements & the New Guardianship Legislation: overview of the new British Columbia guardianship legislation which enables people with disabilities, regardless of their legal capacity, to choose people to assist them make decisions thereby giving status to friends and families. 
  • for more on PLAN workshops 


PLAN affiliates 
are incorporated across Canada--in Prince George and Okanagan; Calgary, Edmonton and Lethbridge; Regina; Ottawa, Port Elgin and Waterloo-Wellington; Montreal; and Dartmouth NS--and in the United States (Seattle).
 Click for details of PLAN affiliates
 

A GOOD LIFE: for you and your relative with a disability by Al Etmanski. Burnaby, BC: Planned Lifetime Advocacy Network, 2000.  Read OAARSN review  

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CELEBRATING OTHER GOOD IDEAS AND NEWS

1. At New Year, JUDITH SNOW of Toronto announced the formation of the International
Association for Inclusive Citizenship. On March 2, 2003: IAIC held its first GALA CELEBRATION at Frontier College, Toronto. IAIC welcomes the membership and involvement of everyone who cares about inclusion and respect for people who live with disabilities. 
Read Judith's announcement  and her update on the IAIC.

2. Special Services at Home Family Network Project in Thunder Bay, Ontario
Nicole Cyrenne, Coordinator has let us know the good news that this project has been extended another year until March 2004, because the local developmental service agencies have generously pooled their resources for a second year, as they recognize the value of the project.

What this means for families and support workers and the community in general is that Nicole will be able to continue providing the bi-monthly newsletter sharing information, training sessions to families and support workers (e.g. Positive Behavioural Support Strategies, CPR/First Aid, Back care/lifting transferring, etc.), and the resource for families wanting to connect with each other. This past year, we connected over 35 families ia email and or telephone to support each other through various hurdles/challenges. It's been an amazing year, and the project is certainly a one-of-a-kind initiative for Ontario families.
For more information email nicole@mail.tbaytel.net

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ISSUES AND ADVOCACY

1.  Disabled Children Get Boost
but more local community-based inclusion is advocated
Brampton has leased the site of the former Ontario Provincial Police academy to two organizations for the development of a $79 million treatment centre and recreational complex for disabled children.
But this move to concentrate services in large institutional settings does not appeal to advocates of more individualized approaches to supporting people with disabilities. Stan Woronko writes to the editor of The Star:
"ALL children belong together, and their social and recreational needs can be served better in their neighbourhoods, local schools and community centres. What we really need to do is to welcome them and to accommodate their needs locally."  Read his letter  (published in the Star on Feb 27).

2.  The orphan child of medicare
From the story by Carol Goar in the Toronto Star. 
Last week, the Senate social affairs committee, headed by Michael Kirby, started to examine some of the issues largely left out of last year's health-care debate. The first is mental illness, what Phil Upshall of Guelph, chair of the Canadian Alliance of Mental Illness and Mental Health, calls "the issue that keeps falling off the agenda." The Senate committee will launch a series of round tables on disorders ranging from autism to Alzheimer's disease. It will look at the stigma attached to mental illness, the addictions that often accompany it, and the cost in terms of personal anguish and lost productivity. The committee plans to issue two reports: one in June, outlining the scope and seriousness of the problem, and a second in December recommending solutions.

3. Canada's 2003 federal budget brings some good news for families of people with disabilities:
a) It raises the income threshold that determines whether disabled children are "financially dependent" for the purpose of enabling tax-free rollovers from their parents' RRSP and RRIF funds into trusts. The change in the dependency threshold to $13,814 from $7,634 is a direct result of PLAN's lobbying efforts. The previous threshold effectively limited its value for adults receiving provincial income support because of their disability (such as the ODSP in Ontario). 

b) A new $1,600 child disability benefit, effective July 2003, is now available for families of low and modest income. The eligibility requirements are identical to those for the disability tax credit. The full benefit will be given to low-income families receiving both the child tax benefit and the national child benefit supplement. After that, the new CDB will be reduced based on family income. 

c) Starting in 2004, the federal employment insurance program will be expanded to allow "compassionate care leave to those who must look after a gravely ill child, parent or spouse."

Of course these provisions will not help every person or family who is vulnerable or stressed because of disability. The first is for families with sufficient past incomes to have RRSP and RRIF funds. The second is only for lower-income families who certainly need it and more. And the third is for family members who have jobs from which they can take leave: many caregivers of children and adults with severe disabilities have had to limit or give up waged or salaried work that counts for EI.

Read the budget speech:
It's been suggested that families affected by disability send the federal Minister of Finance a letter of appreciation for raising the threshold.  His contact information is:
     The Honourable John Manley
     Deputy Prime Minister and Minister of Finance
     Department of Finance
     21st Floor, East 
     140 O'Connor Street
     Ottawa, Ontario 
     K1A OG5 

In other disability-related budget news, Stewart Lewis of Investment Executive writes that: 
"Ottawa is also funding continued study and improvement of the disability tax credit programs an exercise that will cost $25 million in 2003-2004, and $80 million in 2004-2005.

"With this budget, the federal government has established a technical advisory committee on tax measures for disabled people. It will advise the federal ministers responsible for finance and the CCRA. Over a period of 18 months, the committee will look at three key issues: DTC eligibility, particularly for people who suffer episodic and mental conditions; the list of daily activities used to determine eligibility; and identification of professionals used to determine eligibility.

"In August 2002, the federal government issued a response to a report by the House of Commons committee on the status of persons with disabilities regarding DTC eligibility, which resulted in an uproar. The committee's chairwoman, Toronto Liberal MP Carolyn Bennett, alleged that the government had ignored eligibility recommendations made by the committee."

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HELPFUL RESOURCES

1. Caregivers and personal assistants: how to find, hire and manage the people who help you (or your loved one!). By Alfred H. DeGraff, 2002.  For our review

2. National Organization on Disability (N.O.D.) has produced its first Emergency Preparedness Initiative Guide for Emergency Managers, Planners & Responders. Now online at http://www.nod.org/pdffiles/epi2002.pdf

3. "THE ENABLELINKER":
The E-zine Linking You to Canada's Disability Community.
Publisher: Canadian Abilities Foundation
Tel.:  416-923-1885
Fax:  416-923-9829
Visit us today at: http://www.enablelink.org
or e-mail: info@enablelink.org

The December issue drew attention to:
** Updated Statistics on Canadians with Disabilities **
One in seven Canadians over the age of 15 has some sort of disability, according to the new preliminary results of the 2001 Participation and Activity Limitation Survey (PALS). This is the first complete survey on Canadians with disabilities in 5 to 10 years. For more results, visit the Statistics Canada website: 
http://www.statcan.ca/Daily/English/021203/d021203a.htm

** Reactions to the Romanow Report **
On November 28, Health Care Commissioner Roy Romanow delivered his report, "Building on Values: The Future of Health Care in Canada." Several responses from the disability and health communities are now available. For a good sampling of links, visit the website of DAWN Ontario (Disabled Women's Network Ontario), http://dawn.thot.net/romanow.html

4. The Beaumont Foundation is giving out $350 million over the next five years in computer equipment to underserved populations, including people with disabilities.  They have three types of grant programs, but people with disabilities are especially encouraged to apply for the individual grants (roughly $2000 per individual).  Contact http://www.bmtfoundation.com/grants/ or call 1.866.505.COMP (2667).