Good Lifetimes

FOCUS / NICHOLAS WRIGHT

"The bird, a nest. The spider, a web. Man, friendship."
- William Blake

REGAL DEMEANOR
The Governor General of Canada Adrienne Clarkson and His Excellency John Ralston Saul talk with Nicholas Wright at Rideau Hall earlier this year. Wright’s mother, Donna Thomson, far left, says the discussion ranged from Nicholas’s interests, his alternative communication and Lifetime Networks. His Excellency is the new patron of PLAN.

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$60 gets you news, a copy of "A Good Life," workshop discounts, member services, more. Visit us! See next page or www.plan.ca.

A GOOD LIFE
"I was touched, troubled, tantalized and then tranquil, with a sense of direction, hope and peace for the future. So easily we live in denial until something unforeseen happens that cracks our false sense of security. This book is a love story of family and a love story of parents offering to other parents a path to peace of mind and heart."
- Cathy Anthony, parent and Executive Director, Family Support Institute
Visit the website: www.agoodlife.org or contact PLAN to get this book.


ADVOCACY / AL ETMANSKI

TIME TO TALK

The families who created PLAN wanted an organization that would be able to speak without fear of consequences, not only for individuals and families, but also on policy issues that affect them.

While PLAN offers practical information on wills, estates, discretionary trusts, taxation, alternatives to guardianship, government benefits, home equity and developing a Personal Network, an equally important component of our work is our advocacy.

To ensure our effectiveness as advocates, our founders developed a simple formula: ensure family leadership at all stages of the organization’s history; and remain self-sufficient and independent of government funding. This was prophetic advice as we look at the effect of cutbacks and restraint programs across Canada and, indeed, worldwide. Few organizations remain that can hold government’s feet to the fire without "biting the hand that feeds them." It’s not easy to establish a diversified base of funding independent of government, but it’s good life insurance.

Almost every day we help resolve an issue of immediate concern for an individual or family. We also continue to address medium- to long-term policy and legislative barriers to creating a good life for our family members.

We are currently educating our provincial and federal governments about the increasing numbers of our family members who will soon be senior citizens. We are also advocating to improve the "tools" families can use to prepare for the financial well-being of their relatives with disabilities. For example, we would like to convert RRSPs into a discretionary trust for our family member with a disability without paying taxes or risking the loss of disability benefits. We also want to establish a disability savings plan to help families cover the extraordinary costs associated with disability.

It’s time to talk to government about how best to combine our efforts to maintain the safety and well-being of our sons and daughters.

PLAN has engaged Richard Bridge, a lawyer whose practice is primarily focused on charity(ies) and the voluntary sector. He wrote the initial policy paper, "The Law of Advocacy by Charitable Organizations - The Case for Change." He participated in the national dialogue, conducted hearings across Canada and was lead writer of "Let Charities Speak - Report of the Charities and Advocacy Dialogue" released in March. Richard has drafted a policy paper that summarizes some of the challenges and solutions families are suggesting. For a copy, contact Richard at: rbridge@plan.ca.

In this day and age, the only certainty for our loved ones is the collective efforts of families. It’s time to talk.

ADVERTISEMENT:
Law and Policy Reforms Needed by Canadians with Disabilities and their
Families
For a copy, visit: www.plan.ca



PARENT PERSPECTIVE / DONNA THOMSON

A CHILD TEACHES THE VALUE OF FRIENDSHIP

Nicholas Wright has been a good friend to Eleni Wener ever since the two met in grade four at Churchill Alternative Public School. Eleni never minded that Nicholas cannot speak without a computer or that he used a wheelchair to play soccer-baseball at recess. Eleni simply shared Nick’s addiction to sports, computer games and junk food.

The two friends have enjoyed outings to the mall and sports events and, most of all, Nick has been Eleni’s biggest fan in her chosen sport of ringette. Nowadays, Eleni and Nicholas don’t see each other as much as they’d like, since each is attending a different school. But that hasn’t stopped them from caring deeply about their friendship. Last year when Rabbi Steven Garten of Temple Israel began preparing Eleni for her bat-mitzvah, he spoke to her about charity and a life which included giving back to community. Rabbi Garten encourages all his bar-mitzvah and bat-mitzvah candidates to share a portion of their gift money with a cause of their choice. Eleni’s mom, Lynn Oreck-Wener, recounted to me her daughter’s determination to give some of her funds to the Jewish Charity TIKVA and some to a charity that supported children with disabilities. Then Eleni read a letter to the editor in The Ottawa Citizen that I had written about how Lifetime Networks Ottawa (LNO) offers hope to families with a member with a disability. Eleni decided right then and there to offer the other portion of her gift money to Lifetime Networks.

But Rabbi Garten knows that the seeds of lifelong giving will not be planted by simply handing over a cheque. He requires the young men and women to give a presentation on the charity(s) of their choice and explain the ways in which the organizations serve important needs in our community. I don’t know if Eleni realizes how profoundly we treasure her gift for LNO and her friendship with Nicholas. I can imagine, though, what a challenge it was for her to explain the mission of Lifetime Networks while preparing for her big day and carrying on at school. Lifetime Networks is hard to explain, because it offers a safe and secure future for the family through a lifelong support network of friends. It is firmly rooted in the belief that our quality of life is determined by the quality of our loving and responsible friendships. It is the layer over and above paid assistance that is true, unwavering, respectful and loving. It may be difficult to imagine who would possibly want to befriend someone like my son for life, but just ask Eleni. She’ll tell you how easy it can be.

(Donna Thomson is with LNO and the mother of Nicholas Wright.)


PARENT PERSPECTIVE / KATHLEEN JORDAN

HIS PLACE IS IN THE THICK OF A BUSY, LOVING COMMUNITY

PHOTO CAPTION:
Christopher Jordan, far right, with (left to right) his friend, Chris Walsh, and his siblings, Suzanne and Geoff Jordan. "This photo reflects what is important to Chris: his siblings and his friends," says his mother. "He often says to me, ’It’s not that I don’t love you and Dad, but my friends are more fun.’"

At my age, 64 and counting, and the mother of three grown children, I want to prepare for grandchildren, retirement and travel, and enjoy the fruits of my labour. Instead I am planning for my death and hoping that when it does happen, my in-basket will be empty, my house will be in order and my children will be independent and secure in their life choices.

Geoffrey, the eldest of the three, has already flown the nest, happily married and working in Toronto, while Suzanne, the youngest, recently graduated from university, has a new job and is in the process of making her plans for the future. Christopher is out with one of his community integration and employment support workers, busily shredding top-secret documents from one of his private contracts. Passionate about his work, he is perfect for the job, and an excellent security risk, since he does not read, write or remember!

Christopher was born in 1974 and had a difficult time during his first years of life. From the time he was a baby, I never swayed from my belief that his place was with his brother and sister, neighbours and friends in the thick of a busy, loving family and community.

The struggles to have Christopher included began in preschool. His dream to have a job, to live interdependently with his friends and to enjoy social outings - in short, to have a life - has always been his priority and continues to preoccupy me. He wants to be like his brother, Geoff, his sister, Suzanne, his friends, Chris Walsh, Tara and Gwyneth. Unfortunately, his reality is far from his dream, and I worry daily about how to wrestle this problem to the ground.

For the first time in history, people with disabilities are outliving their parents. Who will be there for them when we are gone? Will Christopher’s life be a good life? Will he able to experience and maintain the standard of love, life and living that he has been accustomed to so far? I need to make this happen.

What we want for our sons and daughters will not depend on the whims of social services and funding programs. It will depend on families regaining control of simple fundamental questions: What do we and our children want? What is a good life? Social services and funding programs are a basic necessity, but we want to go beyond that. We want to guarantee a safe and secure future: one that respects them as individuals, that allows them to enjoy financial security and live in a place of their own choice. A life of opportunities for full participation in a caring and hospitable community. One where people are supported not only by family but by their own personal network of friends, so their wishes and choices are respected. One where they are protected from abuse and exploitation, and are encouraged and allowed to make their own contribution. A life that is not just survived... but really lived.

(Kathleen Jordan is a founding member of Lifetime Networks Ottawa (LNO), currently a board member and interim executive director.)


ALL AROUND US

FACILITATOR TRAINING
Recent facilitator-training in Ottawa: Left to right: Joy Ramjitsingh, Sylvia MacKenzie, Sonia Aston; Kathleen Jordan, Lifetime Networks Ottawa director and facilitator-trainer; Nicole Marchesseault, WSEP Montreal, facilitator trainer; and Shirley Garrow, parent of person who has a facilitator. Lifetime Networks Ottawa (LNO) recently launched the "LifeWorks" newsletter, named by Marjorie Higginson of Montreal, a grandparent of a focus person. LNO played a key role in the Government House reception in April to recognize His Excellency John Ralston Saul as PLAN’s patron.
- Kathleen Jordan


PRINCE GEORGE, BRITISH COLUMBIA
Things have exploded; we spent a year and a half with one network and, recently, we’ve had two more start, one sign on and three more waiting for facilitators. Our president, Lorraine, and her daughter, Kathy, as well as my husband, daughter Bree and I did interviews for a local two-part TV series. One question: why did we take Bree home from the hospital and not put her into an institution? We forget that there are people out there who still don’t understand.

My husband and I represented PLAN P.G. in Ottawa at Government House, and we will attend the consortium in Edenvale in late May.
- Terry Robertson

LETHBRIDGE, ALBERTA
The Alberta Law Foundation has given Lethbridge PLAN a major grant. This will let us begin an Alberta version of PLAN’s popular book, Safe and Secure, which had a focus on families in B.C. Our version will be rewritten in keeping with Alberta laws and hopefully will be available this fall. Families from Edmonton and Drayton Valley networked in Lethbridge on May 4 to share ideas about PLAN in Alberta.
- Tom Cain

NOVA SCOTIA
Lifetime Ability Networks of Nova Scotia (LANNS) has hired two facilitators; four more interviews and training sessions were recently held. Our families are ready, and we are on the move. A "Wills and Estate Planning" workshop was held in early May with social and interactive time. We are excited and encouraged by the interest we see in the community about LANNS and networks.
- Sandra Wilson

PLAN AFFILIATES:

Planned Lifetime Support Networks (Bruce-Grey Inc.)
c/o Lorrie and Larry Garrod, 582 Mill St., Port Elgin, ON, N0H 2C0. Phone: (519) 832-6147 (w); e-mail: bgln@bmts.com.

Planned Lifetime Networks (Waterloo-Wellington-Oxford, Ontario)
c/o Roslyn Vincent, Lynne Thomson, 29 Sandcliffe Pl., Waterloo, ON, N2T 1A8. Phone: (519) 746-7950 (h); e-mail: rvincent@sympatico.ca.

WSEP Lifetime Networks (Montreal, Quebec)
c/o Nicole Marchessault, 14415 rue Mayo, Pierrefonds, QC, H9H 1L8. Phone: (514) 620-4380 (w); fax: (514) 696-3070; e-mail: nicolesantilli@sprint.ca.

Lifetime Ability Networks of Nova Scotia
P.O. Box 21008, 4 Forest Hills Dr., Dartmouth, NS, B2W 6B2. Phone/fax: (902) 462-0666; e-mail: lanns@accesswave.ca; www.nsnet.org/lanns.

Lethbridge ACL PLAN (Lethbridge, Alberta)
c/o Tom Cain, 2518 Fifth Ave. S., Lethbridge, AB, T1J 0X5. Phone: (403) 327-3365 (h), (403) 327-2911 (w); fax: (403) 320-7054; e-mail: thecains@telusplanet.net.

Lifetime Networks Ottawa (Ottawa, Ontario)
c/o Kathleen Jordan, 406 - 1390 Prince of Wales Dr., Nepean, ON, K2C 3N6. Phone: (613) 738-4474 (h), (613) 748-7162 (w); fax: (613) 226-7522; e-mail: kjordan@magma.ca.

Prince George Lifetime Networks Society (Prince George, British Columbia)
c/o Terry Robertson, 2458 Rush Place, Prince George, BC, V2N 3E4. Phone: (250) 564-5681 (h), (250) 561-7300 (w); e-mail: planpg@ckpg.net.

PLAN SPONSORS:
Helping families embrace the future
- Wood Gundy
- The J.W. McConnell Family Foundation
- CN
- ICBC: The Insurance Corporation of British Columbia

Planned Lifetime Advocacy Network
250 - 3655 Kingsway
Vancouver, BC V5R 5W2
Phone: (604) 439-9566
Fax: (604) 439-7001
Toll free: 1-888-696-PLAN
Website: www.plan.ca
Email: inquiries@plan.ca

Executive Director: Al Etmanski

Executive Director, PLAN Institute for Citizenship and Disability: Vickie Cammack

President, Board of Directors: Ted Kuntz

Editorial Liaison: Karin Melberg Schwier

Editorial Advisory Board:
Nicole Marchessault, Montreal, Quebec
Ted Kuntz, Port Coquitlam, BC

Good Lifetimes welcomes submissions about activities, events, and story suggestions from your part of the country. Send to karin.schwier@shaw.ca, or mail to: Copestone Writing, 908 University Drive, Saskatoon, SK, S7N 0K1. Include contact information.