Advocates fighting for `an invisible population'
People with developmental disabilities must be vaccinated right away, they say
Advocates for people with developmental disabilities say they're fed up with being ignored and plan to sue the Quebec government if it continues to delay COVID-19 vaccination for their vulnerable loved ones.
On Thursday, constitutional lawyer Julius Grey said he'll send a demand letter on their behalf to Premier François Legault and Health Minister Christian Dubé to vaccinate people with developmental disabilities based on scientific evidence of the group's increased risk of complications and death from COVID -19 and the fact that other jurisdictions have prioritized them.
“And if nothing is done, then presume action will follow,” Grey said in an interview with the Montreal Gazette. The government, he said, should receive the letter by Monday.
“It's absurd that it's contrary to life, liberty and security of the person. Failure to accept a group that is really in danger is basically contrary (to the law). Why would you not prioritize such a group?”
Montrealers Rissa Mechaly and Evelyn Lusthaus, who each have an adult child with Down syndrome, are among a group of individuals who reached out to Grey after their efforts to get the Quebec government to prioritize people with developmental disabilities were ignored.
“The fight is for all persons living with a disability who up to this point have been ignored,” Mechaly said.
“It's like they're an invisible population.”
Lusthaus and Mechaly's petition to pressure the Quebec government to prioritize people with Down syndrome for the vaccine has garnered over 20,000 signatures.
They launched it after international studies found that a person with Down syndrome is more susceptible to COVID-19 than the general population, four times more likely to be hospitalized with it and 10 times more likely to die from it.
Legault was asked at a press conference on Thursday to explain why his government isn't yet widely offering the vaccine to people under 60 with developmental disabilities.
“The answer is that we follow a recommendation of public health,” he said. “Of course we would like to do more, we would like to vaccinate these people faster. But right now, we recommend the list and the priorities of public health.”
However, several Quebec organizations advocating for people with disabilities and mental health issues contend the decision to withhold the vaccine has been a political one.
“It appears that politics has its reasons that COVID-19 ignores,” the groups, which include the Société québécoise de la déficience intellectuelle (SQDI), said in a press release this week. The declaration notes that six out of 10 people who die from COVID-19 have disabilities, and that the risk of death in young adults with intellectual disabilities is as much as 30 times greater than the general population. People diagnosed with schizophrenia have three times the risk of dying from COVID -19 than the general population, it says.
“It is time for the Health and Social Services Department to recognize what science confirms.”
Other countries and about half of the provinces and territories in Canada have given higher vaccine priority to certain groups of disabled people.
When Quebec announced the vaccine rollout last year, it grouped people under the age of 60 with chronic conditions into a category that was eighth in line out of 10 categories to get the vaccine. But when the group became eligible for vaccination a couple of weeks ago, the government removed people with Down syndrome, sickle cell anemia, diabetes and heart, lung and kidney disease from the list — unless they're hospitalized.
Most people with Down syndrome aren't hospitalized, SQDI executive director Anik Larose said in an interview. “That affects, what, two or three people in Quebec? Ten? We're extremely disappointed.”
Larose's daughter, Marie, 25, has Down syndrome and the family has been separated while Marie stays in the country to reduce her risk of exposure to COVID-19.
Even a “half victory” in March that allowed adults under 60 with developmental disabilities living in group homes to get vaccinated is stalling, Larose said. Moreover, those in the under-60 category living in intermediary resources and CHSLDS were denied the vaccine months ago even though the settings, not seniors per se, were the top priority vaccine category, she said.
“It's nonsense in my opinion,” Larose said. “What does it take to vaccinate (people with a disability)? There aren't a million of them in CHSLDS.”
In the meantime, some people with developmental disabilities who live at home and who are clients of CLSCS on Montreal Island have been contacted by their CLSC to get the vaccine. But that isn't the case across Quebec.
Lusthaus and Mechaly's children have been vaccinated, but Mechaly said they'll continue the battle for all vulnerable people living with disabilities or mental illness.
She's also considering a human-rights complaint against the Quebec government, she added.
“There are people who are still waiting and weren't called at all,” Mechaly said. “We'll keep fighting for everybody.”