He wants help to live, not to die
Reached by muscular dystrophy and forced to live in a CHSLD, a 42-year-old man is disappointed to see that the Quebec government will not appeal the ruling on medical aid in dying and continues to challenge federal parties.
Jonathan Marchand would have liked Quebec and Ottawa to appeal the Baudouin judgment rendered last September. The Legault government closed the door yesterday and Wednesday, at the Face-à-Face at TVA, only the conservative Andrew Scheer leaned in for an appeal of the ruling.
For Mr. Marchand, who lives at the CHSLD hospital Sainte-Anne-de-Beaupré where he is "imprisoned" since 2012,
since his illness makes him dependent on an artificial respirator, this is disappointment.
With this judgment, it would be easier for him to die than to live. For Mr. Marchand, it is a "nonsense". He will be visiting Parliament House next week to make his voice heard in order to present a personal assistance project that would empower people with disabilities.
"What is even more disappointing is that there is no proposal on the table to give help to the people who need it to live.
Not only does Quebec not appeal, but there is no measure proposed, "he said.
Mr. Marchand considers that his place is not in a CHSLD and he wants to leave. According to the Ministry of Health and Social Services (MSSS),
3203 people aged 64 and under lived in a CHSLD in Quebec, as of March 31, 2018.
Living exclusion
Since the age of 15, Mr. Marchand has been traveling in a wheelchair. Until 2010, this senior computer network engineer had a busy life,
but severe pneumonia has tipped everything up.
"When I was in intensive care, I was offered euthanasia several times without ever offering myself the choice of being able to live my life in the community. I live in a system of segregation. The message that is sent to me is that we do not want me anymore and that
I will spend the rest of my life in a medical prison, "he told the Journal .
Dangerous expansion
Dr. Paul Saba, Chair of the Coalition of Doctors for Social Justice, supports Mr. Marchand. He believes the recent court decision is a dangerous expansion of euthanasia and assisted suicide for people with disabilities who are not at the end of life.
The College of Physicians of Quebec and four other professional orders say that there is no need to delay the process
and have asked governments not to appeal.
In the CHSLD where Mr. Marchand lives surrounded by elderly people with cognitive loss, the shock was so brutal on
his arrival that he spent three and a half years without leaving his room.
"I never chose to live in an institution," he added.
A second setback for Jonathan Marchand
The CAQ government's decision not to appeal the Baudouin judgment represents a second setback for Jonathan Marchand, who had proposed a more flexible and less expensive model to allow persons with disabilities who live in institutions to return to their community.
According to the model submitted by Co-op Coop Assist, co-founded by Mr. Marchand, people with disabilities would receive a personal budget to fund their care and hire life assistants who may not necessarily be from the health care field. This proposal was however rejected at the end of the summer.
Currently, Mr. Marchand estimates that it costs more than $ 350,000 a year for the government to stay in a CHSLD, while the personal assistance program proposed to the government would save money, while giving back more money. integrity and hope for people with disabilities, he says.
"In a CHSLD, I am governed by codes of ethics, codes of ethics and collective agreements. They can not treat me as a normal person. I have to be treated like a patient at all times. It's super alienating, "he testified.
In recent years, he estimates that he has been in the hands of about 1,000 different people.
Several pitfalls
The project was presented to the Department of Health and Social Services which closed the door.
"The Coop Assist project, while commendable, is financially unsustainable. Not only does it not take into account departmental guidelines in terms of home support, but as presented, it would not respect the principle of network accountability under the Health and Social Services Act. " Alexandre Lahaie, press secretary for Minister Danielle McCann.
The implementation of a pilot project would cost between $ 4 million and $ 8 million.
It is estimated that about 30 people could participate in the first year.
"In addition to the costs, Coop Assist offers silo work, while the guidance is clear in terms of home support.
The journey of a user is always determined between the user, his family, health professionals and the health facility, "added Mr. Lahaie.
"There is also a legal problem in terms of professional order. The creation of the position of life assistant that he proposes is a little inapplicable because it would contravene acts that are reserved for categories of professionals. In the field of health, you know it's pretty tricky. "
Mr. Lahaie recalls that the CAQ has injected $ 280 million to improve the care of users that requires home support.
"It's never perfect because there is catch-up to do," he added.
CAQ seniors' homes must accommodate alternative pavilions for adult clients living with a disability due to a physical or intellectual disability or an autism spectrum disorder. The government promises to unveil the details soon.
The Québec Ombudsman has already mentioned more than once in the past that CHSLDs are not suitable
for people who are not seniors and who have severe physical disabilities.
Jonathan Marchand would have liked Quebec and Ottawa to appeal the Baudouin judgment rendered last September. The Legault government closed the door yesterday and Wednesday, at the Face-à-Face at TVA, only the conservative Andrew Scheer leaned in for an appeal of the ruling.
For Mr. Marchand, who lives at the CHSLD hospital Sainte-Anne-de-Beaupré where he is "imprisoned" since 2012,
since his illness makes him dependent on an artificial respirator, this is disappointment.
With this judgment, it would be easier for him to die than to live. For Mr. Marchand, it is a "nonsense". He will be visiting Parliament House next week to make his voice heard in order to present a personal assistance project that would empower people with disabilities.
"What is even more disappointing is that there is no proposal on the table to give help to the people who need it to live.
Not only does Quebec not appeal, but there is no measure proposed, "he said.
Mr. Marchand considers that his place is not in a CHSLD and he wants to leave. According to the Ministry of Health and Social Services (MSSS),
3203 people aged 64 and under lived in a CHSLD in Quebec, as of March 31, 2018.
Living exclusion
Since the age of 15, Mr. Marchand has been traveling in a wheelchair. Until 2010, this senior computer network engineer had a busy life,
but severe pneumonia has tipped everything up.
"When I was in intensive care, I was offered euthanasia several times without ever offering myself the choice of being able to live my life in the community. I live in a system of segregation. The message that is sent to me is that we do not want me anymore and that
I will spend the rest of my life in a medical prison, "he told the Journal .
Dangerous expansion
Dr. Paul Saba, Chair of the Coalition of Doctors for Social Justice, supports Mr. Marchand. He believes the recent court decision is a dangerous expansion of euthanasia and assisted suicide for people with disabilities who are not at the end of life.
The College of Physicians of Quebec and four other professional orders say that there is no need to delay the process
and have asked governments not to appeal.
In the CHSLD where Mr. Marchand lives surrounded by elderly people with cognitive loss, the shock was so brutal on
his arrival that he spent three and a half years without leaving his room.
"I never chose to live in an institution," he added.
A second setback for Jonathan Marchand
The CAQ government's decision not to appeal the Baudouin judgment represents a second setback for Jonathan Marchand, who had proposed a more flexible and less expensive model to allow persons with disabilities who live in institutions to return to their community.
According to the model submitted by Co-op Coop Assist, co-founded by Mr. Marchand, people with disabilities would receive a personal budget to fund their care and hire life assistants who may not necessarily be from the health care field. This proposal was however rejected at the end of the summer.
Currently, Mr. Marchand estimates that it costs more than $ 350,000 a year for the government to stay in a CHSLD, while the personal assistance program proposed to the government would save money, while giving back more money. integrity and hope for people with disabilities, he says.
"In a CHSLD, I am governed by codes of ethics, codes of ethics and collective agreements. They can not treat me as a normal person. I have to be treated like a patient at all times. It's super alienating, "he testified.
In recent years, he estimates that he has been in the hands of about 1,000 different people.
Several pitfalls
The project was presented to the Department of Health and Social Services which closed the door.
"The Coop Assist project, while commendable, is financially unsustainable. Not only does it not take into account departmental guidelines in terms of home support, but as presented, it would not respect the principle of network accountability under the Health and Social Services Act. " Alexandre Lahaie, press secretary for Minister Danielle McCann.
The implementation of a pilot project would cost between $ 4 million and $ 8 million.
It is estimated that about 30 people could participate in the first year.
"In addition to the costs, Coop Assist offers silo work, while the guidance is clear in terms of home support.
The journey of a user is always determined between the user, his family, health professionals and the health facility, "added Mr. Lahaie.
"There is also a legal problem in terms of professional order. The creation of the position of life assistant that he proposes is a little inapplicable because it would contravene acts that are reserved for categories of professionals. In the field of health, you know it's pretty tricky. "
Mr. Lahaie recalls that the CAQ has injected $ 280 million to improve the care of users that requires home support.
"It's never perfect because there is catch-up to do," he added.
CAQ seniors' homes must accommodate alternative pavilions for adult clients living with a disability due to a physical or intellectual disability or an autism spectrum disorder. The government promises to unveil the details soon.
The Québec Ombudsman has already mentioned more than once in the past that CHSLDs are not suitable
for people who are not seniors and who have severe physical disabilities.
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