Towards the abandonment of the notion of neuromotor disability
(Quebec) The expert panel mandated by the Minister for Health and Seniors, Sonia Bélanger, recommends that the notion of neuromotor disability be replaced by that of "severe physical impairment resulting in significant and persistent disabilities" in the bill on medical assistance in dying (MAID).
"That the equal rights, including the right to self-determination, of the person with a severe physical disability be recognized," reads the panel's recommendations.
Minister Bélanger welcomes this recommendation. "Several groups have told us, 'We want to be seen as whole people. We don't want to be labeled disabled." So I think it responds to what several groups have told us," she said at a press briefing on Friday.
"We did not want to discriminate and ensure that people with physical disabilities do not have access to medical assistance in dying if they naturally meet all the criteria," she added.
Liberal MP Jennifer Maccarone agrees. "I very much welcome the fact that we will go beyond the definition of disability to go further. What we don't want is to discriminate against a segment of the population," she said.
Also, the expert group "considers that when dealing with severe physical impairment, the criterion of 'advanced and irreversible decline in capacity' should be replaced by that of 'significant and persistent disabilities'".
Such a major amendment to the bill must go through cabinet. Thereafter, the detailed study can continue. The minister still hopes to have it passed before the end of the parliamentary session.
"Respect for the right to life"Before the press briefing, parliamentarians listened to a dozen groups representing people with disabilities or intellectual disabilities.
Several spokespersons raised unease and misunderstandings around the notion of "physical disability". Others are concerned that the bill casts too wide a net or that medical assistance in dying will be seen as an alternative to the lack of services for people with disabilities.
"For us, one thing that is important is that there is respect for the right to live. We want the government to establish all the services and repair what it has damaged to ensure that the person has the will to live. It must not be because of a lack of service that she will ask for medical assistance in dying, "said Paul Lupien, Chair of the Board of Directors of the Confédération
des organismes de personnes handicapées du Québec.
"There is concern about the delay in implementing a new law that would expand medical assistance in dying. We think it would take a delay, perhaps a year, to allow stakeholders, doctors and people involved to be trained in the new criteria, "explained, for his part, the executive director of the same group, André Prévost.
ReminderAt the beginning of April, the Minister announced the creation of a committee of experts to study the concept of neuromotor disability.
"The notion of neuromotor disability is difficult to define and therefore it would mean, possibly, difficult to apply. And it would also mean that it could cause harm," said Minister Sonia Bélanger at the time.
During consultations on the bill, groups such as the College of Physicians called for the removal of the adjective "neuromotor" to encompass several types of disabilities, and thus align with the federal government. Former PQ MP Véronique Hivon – considered the "mother" of the current MAID law – called for caution and substantive debate, given that the definition of disability is "extremely broad".
Minister Bélanger had acknowledged, after the first day of consultations, that the concept of neuromotor disability was far from consensus.
Bill 11, introduced in February, aims to broaden the criteria for making a request for medical assistance in dying. It would open the door to advance requests for people with a serious and incurable illness.
"That the equal rights, including the right to self-determination, of the person with a severe physical disability be recognized," reads the panel's recommendations.
Minister Bélanger welcomes this recommendation. "Several groups have told us, 'We want to be seen as whole people. We don't want to be labeled disabled." So I think it responds to what several groups have told us," she said at a press briefing on Friday.
"We did not want to discriminate and ensure that people with physical disabilities do not have access to medical assistance in dying if they naturally meet all the criteria," she added.
Liberal MP Jennifer Maccarone agrees. "I very much welcome the fact that we will go beyond the definition of disability to go further. What we don't want is to discriminate against a segment of the population," she said.
Also, the expert group "considers that when dealing with severe physical impairment, the criterion of 'advanced and irreversible decline in capacity' should be replaced by that of 'significant and persistent disabilities'".
Such a major amendment to the bill must go through cabinet. Thereafter, the detailed study can continue. The minister still hopes to have it passed before the end of the parliamentary session.
"Respect for the right to life"Before the press briefing, parliamentarians listened to a dozen groups representing people with disabilities or intellectual disabilities.
Several spokespersons raised unease and misunderstandings around the notion of "physical disability". Others are concerned that the bill casts too wide a net or that medical assistance in dying will be seen as an alternative to the lack of services for people with disabilities.
"For us, one thing that is important is that there is respect for the right to live. We want the government to establish all the services and repair what it has damaged to ensure that the person has the will to live. It must not be because of a lack of service that she will ask for medical assistance in dying, "said Paul Lupien, Chair of the Board of Directors of the Confédération
des organismes de personnes handicapées du Québec.
"There is concern about the delay in implementing a new law that would expand medical assistance in dying. We think it would take a delay, perhaps a year, to allow stakeholders, doctors and people involved to be trained in the new criteria, "explained, for his part, the executive director of the same group, André Prévost.
ReminderAt the beginning of April, the Minister announced the creation of a committee of experts to study the concept of neuromotor disability.
"The notion of neuromotor disability is difficult to define and therefore it would mean, possibly, difficult to apply. And it would also mean that it could cause harm," said Minister Sonia Bélanger at the time.
During consultations on the bill, groups such as the College of Physicians called for the removal of the adjective "neuromotor" to encompass several types of disabilities, and thus align with the federal government. Former PQ MP Véronique Hivon – considered the "mother" of the current MAID law – called for caution and substantive debate, given that the definition of disability is "extremely broad".
Minister Bélanger had acknowledged, after the first day of consultations, that the concept of neuromotor disability was far from consensus.
Bill 11, introduced in February, aims to broaden the criteria for making a request for medical assistance in dying. It would open the door to advance requests for people with a serious and incurable illness.
