I also sent a copy to the non seated Alberta Progressive Conservative Rep Bill Stewart and Weslyn Mather (was my Millwoods MLA).
Sent: Thursday, November 02, 2006 3:17 PMTo: 'edmonton.calder@assembly.ab.ca'
Subject: Obstacles
Dear Honourable Mr. Eggen, (Mr. Hawn, Mr. Stewart, Mrs. Mather)
Today on CBC New they were discussing a report released 25 years ago. http://www.cbc.ca/canada/story/2006/11/02/disabled-forum.html called appropriately "Obstacles" as the promises made to people living in institution remain unfulfilled.
My name is Michelle Laverdiere I'm a 38 year old woman with a Disability called Spinal Muscular Atrophy type II. Until 2000 I lived in the community with Self-Managed care I went to University. And even though that program became to competitive for my health was had begun fail. I developed pneumonia when a careless DATS driver left the door open after picking me up from my Dec. final exams, After returning from 6 months recovery a new stiff 3rd year quota was added.I filled my longing to be a teacher by working as a teachers aide. But the cutbacks and health issues brought my disability again to progress 5 - 9 years later. My life stopped when I was forced to move into institutional living. The nice term "Assisted Living" Meant " NO MONEY" I struggled to get out asking strangers in malls for assistance that I before had my aide do.
I have had SMA since birth. Although I have always been an advocate most of my adult life but never really learned what it meant until I had to make a decision to use a ventilator. I was slowly dying of Co2 poisoning and decided my life was worth saving. At the time I thought would be the end of my life but to my surprise felt great. My life was not over;or so I thought. I was living at the Good Samaritan in Millwoods. At the time was the ONLY program for those of us on a ventilator. There were many, many problems from safety to inclusion issues. I became an advocate. My life had purpose again and wrote letters, papers and invited Millwoods MP & MLA's as well as candidates for providence and Federal elections. I was tired of residents basing their vote on issues which the TV deemed important. And posed the question; What are you doing for people with disabilities? Both the delegates and the residents learned a great deal from each other.
Last year at this time we discovered that we would be moving to Capital Care Norwood . We demanded to have a say, negotiating with CHA Norwood for 8 months on many things from safety to comfort. According to the Alberta Legislate website we fall in the Calder district. We moved in to Capital Care Norwood. May 2006 and found much has been improved for saftey and the faculty is lovely but may still be our prison.
We are now your headache Mr. Eggen! It appears that many of the safety issues appear to be being worked on. But the problem of inclusion is still a BIG issue. They have be addressed. I still have dreams beyond . I want to start by auditing class and talking and meeting real people. I was a member of the Organization Committee of the First ever Ventilator Assisted Living Forum. This was many of the many themes found (Transcripts through Canadian Paraplegic Assoc in Edmonton ) at the conference. But why are other provinces dealing better. Are not we the richest province?
So please assist us in making inclusion beyond the classroom of children but possible for adults in long-term care. As I asked the election candidates; "What are you going to do for people with Ventilator related Disabilities?"
My advocacy blog is http://www.mermel112.blogspot.com/ I've included 2 achieve papers I wrote as well as a recent article in
CHA's "People and Places" attached (bloggers they are below)Michelle Laverdière
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3 comments:
Inclusion is great, however I have an issue. What are you willing to do in order to be included in society. Regardless of disability, I do not think you should expect to take from society without giving back. Writing letters to the government asking for money isn't exactly contributing. If you want to audit courses, shouldn't you be expected to go to work and be a tax payer?
Good point it depends what you mean. I have contributed much time on committee's not just yakking. I was the president of the resident council for 5 1/2 years and was involved on many council. The ventilator forum was a result of my initiative. I sat on the Alberta committee of Citizen's with Disabilities for 5 years. I've done many, many hours volunteer before and after I had a job. I even tutored for free when I could. So I've been contributing for years. I think going shopping for my own toiletries would be a start but if I drive through a door an hook my hose so I'm disconnected I cannot speak. Telling a stranger heya... buddy!!! would you mind putting my hose together . I'm a liability you see when your on a ventilator you can't even travel on public transportation alone as I'm a liability. I need help eating ect. I have been offered to do many volunteer potions to talk to school kids. (I'd do it for free if my Aide was paid)I could go volunteer ACCD'S office with my mouse (which I bought myself) and do computer work are going to see it a contributing or just the $150 I was allowed to keep out of my $350 wages? (you can now make a little more now but not much.)
Have you also thought money for an aide would give somebody a job and over a certain amount is money being put into EMPLOYER'S PORTION OF CPP AND UI. not to mention.
Imagine a world with no disabilities. Look at the job loss. Not just in caregiver, wheelchair venders, adult pads, Catheter supplies. All the ventilators get recycled for over 10 years.
Every $ spent on me goes back into society in this country...every cent. It creates jobs generates business and yes it goes back into the tax system. But how many big tax breaks for corporation get spent oversea's expenditures, travel.
Correction but if I drive through a door an hook my hose so I'm disconnected I cannot speak. Telling a stranger heya... buddy!!! Is NOT EVEN PHYSICALLY POSSIBLE
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