(Chloë Ranaldi/CBC - image credit)
Worried that her daughter Hannah could catch COVID-19 in her assisted living space, Evelyn Lusthaus decided last year to move her back home.
Hannah, 43, was born with Down syndrome, as is roughly one in every 770 newborns in Quebec.
"I'm concerned that she'll get COVID and that she'll become extremely sick," Evelyn said. "And she'll be hospitalized, she won't understand what's going on and she'll be alone."
Her concerns only grew after reading a study published last fall in the United Kingdom that shows people with Down syndrome are four times more likely to be hospitalized from COVID-19 and 10 times more likely to die from it.
Lusthaus also pointed to another international study, which suggests people with Down syndrome in their forties and fifties are more vulnerable than other people in that same age cohort.
So, her family launched a petition to ask the provincial government to place people with developmental disabilities higher on Quebec's priority list for vaccinations.
A grassroots campaign to lobby Quebec City
Currently, Hannah Lusthaus is in the eighth of 10 groups listed as priority cohorts — people under the age of 60 with chronic health conditions or health problems placing them at higher risk of contracting COVID-19.
Her mother, and other advocates, argue that's a big mistake.
"We want [the province] to look, see and acknowledge this is more complex for people with a disability and for them to be prioritized," Lusthaus explained. "Not according to their age, but to their condition and medical needs."
She's not alone.
Geneviève Labrecque, the director-general of Regroupement pour la Trisomie 21, a non-profit organization that works with people with Down syndrome, also launched a campaign asking people to write a letter to their local MNAs to demand the change.
It's something some Canadian provinces have begun to look at. Saskatchewan's government is adding adults with significant disabilities in their second phase of vaccinations.
British Columbia has indicated it will vaccinate people with severe disabilities in its third phase — with details to come.
Overlooking age for people with Down syndrome
There is evidence to support those decisions.
Dr. Yona Lunsky, the director of the Azrieli Adult Neurodevelopmental Centre at the Centre for Addiction and Mental Health in Toronto, highlighted research that suggests people with Down syndrome are likely to suffer from associated medical conditions.
Therefore, they're at higher risk of COVID-19 complications and severe cases of the disease at a younger age.
"If we're thinking about supporting people in their older age when they're more vulnerable, we have to recognize that people with Down syndrome, their older age as a younger age," said Lunsky.
"So to wait until they hit 80 to say now, that's an extremely high-risk group. They're already high-risk and they're in their 40s and their 50s."
Lunsky hopes provinces across the country will take the research into consideration as they work through their vaccine priority lists.
Province not planning changes to priority list
A spokesperson for the health ministry said the government acknowledges how difficult the pandemic and confinement measures have been for people with developmental and other disabilities. But, the department said, the risks for people in that population group are not equal.
And its priority list is based on recommendations by the Quebec Immunization Committee (CIQ), an independent body made up of public health specialists.
Dr. Nicholas Brousseau, the CIQ chair and a researcher at the Institut national de santé publique du Québec, said vaccine shortages have forced the province's hand.
For now, the priority is older people, especially those aged 69 and older, and the elderly with chronic conditions who still face the highest risk of catching and dying from COVID-19.
While he acknowledged there is growing literature about the risks for people with Down syndrome, it has yet to weigh in the balance for the CIQ's recommendations to the province.
How the pandemic pushed a family apart
Michael Leclair decided, given the risks for people with Down syndrome, that the safest place for his daughter Megan was in a group home.
In the days where Leclair still needed to work in an office, she would often stay on weekends. All that changed with the pandemic.
"My daughter hasn't lived at home in months," he explained. "I want to make sure she remains in a bubble."
Being left out of the province's vaccination program speaks to a larger issue, he said: people with disabilities being ignored or made to feel invisible.
"I think it's highly important that parents have peace of mind and know that at least their children have an opportunity to be vaccinated and to have some sort of defence against a very unpredictable virus," he said.