Ronny Hartmann Agence France-Presse
The associations for the defence of persons with disabilities, the award criteria in the event of a shortage of respirators in the health care network.
The quebec Society for intellectual disability launched a campaign so that the government Legault revise the national protocol for triage, which will determine which patients will be entitled to a respirator, if the intensive care of the hospitals are overflowing during the pandemic. The organization is concerned that people with disabilities are excluded from the outset of this treatment because of criteria that it considers discriminatory.
“The current protocol we are very worried,” said Anik Larose, director general of the Société québécoise de la déficience intellectuelle (SQDI). It does not exclude judicial proceedings. “
The agency has just put online a website (screening.quebec), calling on the population to mobilize against the protocol of triage. “Today, we don’t apply it, but in the perspective of the déconfinement, there is a concern that we make here “, says Anik Larose.
The quebec Society for intellectual disability has placed a hand on the protocol entitled ” triage for access to the intensive care unit (adult and paediatric) and the allocation of resources such as respirators in the extreme situation of a pandemic “. The Duty has also obtained this confidential document in April.
The organization is concerned about three exclusion criteria appears in a form of triage to intensive care, which must be completed by two doctors (including an intensivist).
There’s a lot of prejudice against the quality of life of people with disabilities
— Anik Larose
According to this form, people with a “neuromuscular disease is advanced and irreversible (for example, Parkinson’s disease, amyotrophic lateral sclerosis (als)” will not be entitled to the intensive care unit in case of extreme situation.
The same fate awaits those who have a “cognitive impairment, severe, due to a progressive disease “or a” total inability to perform the activities of daily living and home independently due to a cognitive impairment progressive “.
People with an intellectual disability do not suffer from a ” progressive disease “.
“But these criteria leave a lot of room for errors of application and interpretation “, believes M Stephanie Cloutier, a lawyer specialized in public health and mother of a child with an intellectual disability.
According to the SQDI, another exclusion criterion is problematic : the score of frailty clinic”, 7 ” and more, because of a condition or impairment progressive underlying. A score of 7 means that the person is totally dependent for personal care, whatever the cause (physical or cognitive) “, one can read at the bottom of the form.
“This score was designed for a customer who has a profile gerontology, said Anik Larose. A person with trisomy 21, who has trouble articulating words, and that has a motor disability, will get a score of fragility very high. It will be immediately excluded. “
The quebec Federation of autism is the criteria for ” questionable and objectionable “.
“The functional abilities of people who have a disorder in the autism spectrum are affected,” said the director-general Luc Chulak. The score of fragility will therefore be higher. It opens the door to excesses. “
He points out that a person with autism may be healthier than another individual of the same age, not having this disorder.
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Dr. Joseph Dahine, who has participated in the elaboration of the protocol of triage, reminds us that it will be applied only in extreme situations, when all the health network in quebec will run out of respirators and artificial.
He points out that the exclusion criteria of the form have been determined from the scientific literature, according to the “best chances of survival” of the patient ” on a short period of time on life support “.
The discrimination is not as clinical and concerned only the respirators, he says.
“These criteria do not ensure that the patient will not have a bed or treatment in the intensive care unit, said the doctor intensivist, who practice the CISSS de Laval. For the past two months, we realize that many patients are able to survive without an artificial respirator. “
The spectrum disorder of autism and intellectual disability are not part of the exclusion criteria, he adds. As for the people suffering from Parkinson’s disease or amyotrophic lateral sclerosis, only those who are in the advanced stage of the disease may not benefit from a respirator, in case of shortage. “We are not talking about a beginning of Parkinson’s,” says Dr. Joseph Dahine.
The score of the fragility of 7, has been set as a function of the mortality associated with such a note, ” he said. “According to the study, there was 80% mortality in the intensive care unit with a score of 7,” said the doctor.
The quebec Society of intellectual disability considers that this measure should not be used. This is also the view of the legal clinic, ARCH Disability Law Centre, which is campaigning for the ontario government withdrew its protocol the exclusion criteria referring to disabilities. These, said the organization, violate the canadian Charter of rights and freedoms.
“It is necessary to ensure that the clinical assessment is objective and individualized,” says Anik Larose, from the quebec Society of intellectual disability. There’s a lot of prejudice against the quality of life of people with disabilities. “
The organization claims that the ministry of Health and social Services to demonstrate transparency and to make public the protocol of triage in the intensive care unit.
In the United States, organizations representing persons with disabilities have successfully challenged the protocol of Alabama. The document stated that individuals with mental retardation or severe dementia, moderate to severe were not eligible for the respirator in a period of rationing. The State took a step back after having been rebuked by the federal government.
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