Tone of Voice Page 2002

Hi there! This is the April/May 2002 edition of Tone newsletter. This issue contains a variety of articles. The newsletter's page is planned to be updated regularly. So come back and see what's new.

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Most of you have already heard about the tragic deaths of the Baulne family of Ellison near Kelowna. On December 30th. 2001 they took their lives in an apparent murder-suicide. Belva and Maurice Baulne and their son, Reece, were found dead in their motorhome due to carbon monoxide poisoning. Reece, 34, was severely disabled and required constant care. His parents had requested $500 per month from the government to help them to continue caring for their son. Their request was denied. They faced extreme financial difficulties because Maurice had quit his job in the spring due to a back injury. The Baulnes had refused to institutionalize their son or have caregivers come in. It seems that the financial strain and deteriorating health on the part of the parents combined to push them over the edge.

On the face of it, it might appear that had the government granted their request all would be well. After all, who would know their son's needs better than themselves. I however, upon further reflection (believe) some serious questions need to be answered. Is it really the best approach to keep adult disabled children at home with their aging parents? In the end, will everyone be worse off rather than better off?

The present policy of the government is not to directly fund parents to provide care for their disabled children. Apparently thus policy is now under review. The government must proceed with caution. It is only natural for parents to want to protect their children. It is even more so when the children are disabled. Consequently, some parents are extremely reluctant to have their disabled children live on their own once they become adults. The parents believe that they are the only ones who can best look after the needs of their children. Consequently, as the years go by and the health of the parents deteriorates to the point of disability and even death, the disabled adults are left in a very vulnerable positions. The adults with disabilities must face grief over the loss over their parents, adjust to new living conditions, and learn skills to live in the community all at the same time. Such a situation is extremely stressful. By funding parents directly to look after their adult disabled children they will have even less incentive to make arrangements for their children to live on their own.

We are not advocating that once a person who is disabled turns 21, they must live on their own. We do believe that parents and their disabled adult children, to the greatest extent possible, make plans for the children to move out of the family home.

The sooner the planning starts the better. Moving a person who is disabled out into the community is not a straight forward undertaking. If the person is disabled to such an extent that he/she can not work, then he/she will require subsidized housing. There are not enough subsidized units to meet demand. Therefore, their names should be placed on waiting lists for BC Housing, Co-ops etc. If the people involved believe group homes are a better option, then the agencies that run group homes must be contacted because there are also waiting lists for these spaces. In order to receive home support, the adults who are disabled must be assessed by a Long Term Care Worker to determine how much care he/she needs. If he/she is severely disabled, programs and activities to occupy him/her during the day should also be looked into. If the parents have an adult child who is severely multiply disabled, they might look into establishing a micro board which will ensure that the person's needs are met. As one can see, this process can take a long time to go through. Therefore, parents are advised to start this process while they are still relatively young and in good health rather than wait for a crisis to occur.

Susan Martinuk* writes about a land mark court case in France in which a severely disabled son's mother sued because doctors assured her that her pregnancy was normal.

Apparently, she thought she had contracted German measles, but the test results were contradictory. She claims that she would have aborted her son if the measles exposure had been confirmed. Subsequently, two high court rulings have up held the judgement that mothers have the right to abort when tests show abnormalities of their fetus.

This case sets some very disturbing precedents. The most startling of which is that disabled babies do not have a right to be born. In fact, they have the right to be aborted. Furthermore, doctors and parents are obligated to uphold the right to be aborted.

I often wonder how people can say that people who are disabled have a terrible quality of life, and therefore would be better off dead. Speaking for myself, I am quite glad that I was born. Sure, I have trials and tribulations, but who does not? Just because a baby is born able-bodied does not guarantee his/her life will be wonderful, nor that he/she will be beautiful, intelligent, a high achiever and successful in all endeavours. We all have our strengths and weaknesses. By eliminating babies who might be disabled we are becoming less tolerant and accepting of differences.

As for the tests themselves, including ultrasound, amniocentesis and genetic screening, they are not totally accurate therefore, there have been cases where tests have shown abnormalities, but the babies who were born had nothing wrong with then. **Heather wrote that she was glad that her mum ignored her doctor's claims that she would be born with mental and physical disabilities and urged her to abort. Heather was born able-bodied. Do we want to put our faith in tests that are not totally reliable? Even if there are abnormalities, the tests do not show how severe the disability maybe. I believe that before a mother decides to abort, she should be supplied with information on the disability or impairment as well as a contact person who has the condition in question. I believe that many mothers abort due to fear and ignorance.

* Some Want Right Not to be Born by Susan Martinuk, Wednesday, December 12, 2001 Issue of the Province.
** If my Mom Believed Docs, I Would not be here, Heather Pearson, Thursday, December 13, 2001 Issue of the Province.

FOR SALE: Wheelchair lift for a car or station wagon. 16 months old. Originally cost $1,350. Asking price is $900. Contact Mrs. Mahood at 604-266-6075

AGM ANNOUNCEMENT
THE VOICE OF THE CEREBRAL PALSIED OF GREATER VANCOUVER
and
THE VOICE OF THE CEREBRAL PALSIED HOUSING SOCIETY
JOINT
ANNUAL GENERAL MEETING

SATURDAY, MAY 4TH 2002.
MOUNT PLEASANT NEIGHBOURHOOD HOUSE
800 EAST BROADWAY, VANCOUVER BC.

Agenda
1:00 to 1:30: Registration
1:30 - 2:30: The Voice of the Cerebral Palsied of Greater Vancouver AGM
2:30 - 3:00: Coffee Break
3:00 - 4:00: The Voice of the Cerebral Palsied Housing Society AGM

Editor's Comments:

Tone of Voice is the newsletter of The Voice of the Cerebral Palsied of Greater Vancouver (VCP). The views and opinions expressed in the Tone of Voice are not necessarily those of the Board of Directors, The Newsletter Committee, or the Production Staff of the VOICE OF THE CEREBRAL PALSIED OF GREATER VANCOUVER The articles presented herein are meant to be thought-provoking end stimulate dialogue. tone Of Voice is a forum for individual creativity end the generation of ideas from within the Cerebral Palsied community of British Columbia. This is your opportunity to share information and insights end to introduce issues and topics you feel should be brought to the attention of the Cerebral Palsied community and the general public. We invite your comments and criticism of any of the articles published here. We hope that you will contribute articles to share with other readers We want your stories, letters, announcements, poetry graphics and cartoons.

The Voice of the Cerebral Palsied of Greater Vancouver
NEWSLETTER COMMITTEE
Suite 103, 577 East 8th Avenue,
Vancouver, B. C.
V5T 1S9

Production:
Chairperson of the Board of Directors - Ted Nelson
Executive Director - Yoshinori Tanabe
Chairperson of the Newsletter Committee - Laurette Yelle
Webmaster - Derek Isobe
Editorship - Newsletter Committee
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