Quebec prioritizing people with disabilities for vaccines, but not if they live at home, upsetting families
Quebecers living with Down syndrome are a high-risk category for COVID-19 complications, no matter where they live.
But while the province's public health system is prioritizing vaccines for people with physical and intellectual handicaps, it's only for those living in residences.
Parents with adult children with Down syndrome who live at home are calling it an oversight, along with their children.
Hannah Lusthaus is 37 years old and lives with Down syndrome. She knows the vaccine is important and she is anxious she won’t get one because she lives at home.
“I'll be happy when….” hesitates Hannah before looking at her mom for comfort.
Evelyn Lusthaus worries about her daughter.
“Several studies showed that their hospitalization is five times the normal and their death rate was 10 times” said Evelyn.
Earlier this week, Premier Francois Legault announced that people living with physical and intellectual disabilities who are in care homes would be able to get their vaccines starting in April. That's good news for citizens living in group homes and residences, but people like Hannah are not on the list.
“It’s a half measure,” said Liberal MNA Jennifer Maccarone, “because it doesn't apply to people who are handicapped or living with autism who live at home.”
“They have extreme physical disabilities and intellectual disabilities simultaneously, they're living at home. Their parents are taking care of them and always have,” continued Evelyn, who said she feels invisible by this oversight in the protocol.
“These people are cut off from getting a vaccine. It's just unacceptable."
In an effort to bring attention to their plight, Evelyn has teamed up with her friend Rissa Mechaly, who is in a very similar situation with her son, Ariel, who is 40 and lives with Down syndrome at home.
The two families have started a petition online and have already gathered more than 17,000 signatures.
“We’re not representing an organization, we're not high-powered people. We're basically two mothers of two young people who we feel deserve to be [vaccinated],” said Mechaly.
“If we are talking about people with disabilities then they fit into that category. There should be a way for them to get vaccinated at the same time and not go to the bottom of the list."
Mechaly said it’s not a question of tracking down people like Hannah and Ariel in their homes for vaccination -- their health records make it easy to locate them.
“If someone looks up his name in a file somewhere, they're going to know he's a person with a disability," said Mechaly.
"We're not coming out of nowhere trying to get into a line and pretending we're just like everybody else."
Maccarone has written a letter to Health Minister Christian Dubé but has yet to hear back. She said the rule shouldn’t be applied based on where people live but on the science of who's vulnerable.
She said it shouldn't be parents' jobs to advocate this way about a medical decision.
“It's not because I'm the parent of two kids on the spectrum that the cause is important," she said.
"Yes, I can certainly relate at a personal level. But I think that it is the mandate and the responsibility of all the 125 MNAs in the National Assembly to take up arms and speak on behalf of those people that are handicapped or that are who living with autism, because it's the right thing to do,” she said.
Other provinces and territories have prioritized this vulnerable segment of the population, so the mothers say they still hope Quebec will decide to do the same, across the board.