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‘It’s a punch in the gut’: Lack of priority in the vaccine rollout frustrates people with developmental disabilities and their families


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‘It’s a punch in the gut’: Lack of priority in the vaccine rollout frustrates people with developmental disabilities and their families

On Thursday morning Theresa Sanders finally broke through. The Innisfil mother had been trying for weeks to figure out how to get Jessica, her nearly 18-year-old daughter who is intellectually and physically disabled, booked for a COVID-19 vaccine appointment.

She knew that since the province moved into Phase Two of its vaccine rollout that people with intellectual or developmental disabilities are now technically eligible for the vaccine. But as she tried to book, spending hours on the phone with her local public health unit and her daughter’s doctors, she seemed to hit a wall at every turn.

Then another parent forwarded her a notice about a vaccine clinic in York Region dedicated to people with developmental disabilities happening next week. Even though she doesn’t live in York, her daughter seemed to be eligible because she is registered with a developmental services organization in the region. So she hopped online and quickly booked an appointment.

Sanders feels relieved that it looks like her daughter might now be able to get her shot, but she’s frustrated by how difficult it was and she’s worried about other families who might not have the time and energy to advocate as aggressively as she did.

“It’s a punch in the gut that the most vulnerable are facing such barriers,” she said.

People with developmental disabilities — who are at a heightened risk for contracting COVID-19 and at a higher risk of worse outcomes if they get it — and their families are dealing with confusion about their eligibility for the COVID-19 vaccine and the different speeds at which the vaccine is reaching them in different parts of the province.

They’re seeing similarly situated people in neighbouring regions get the vaccine ahead of them and hearing about pop-up clinics via informal parent networks rather than official announcements.

“It’s inconsistent across the province,” said Pamela Libralesso, who lives in Barrie. Her son lives in a small group home that is considered a congregate setting, but he hasn’t been vaccinated yet.

“People in his exact same situation in York Region were vaccinated in February,” she said.

Libralesso recently preregistered her son for the vaccine in Toronto via the University Health Network’s booking portal because he is a patient at Sick Kids. She still doesn’t have an appointment and she wished she didn’t have to drive so far to get her son’s shot, but she felt she couldn’t wait any longer.

Elsewhere in the province there are success stories. Like York, the vaccine rollout for people with developmental disabilities in Kitchener-Waterloo has been brisk. Two organizations — KW Habilitation and Sunbeam Community and Development Services — have combined to vaccinate more than 3,000 people and their caregivers.

“Our motto has been leave no rock unturned,” said Ann Bilodeau, KW Habilitation’s executive director.

Bilodeau attributed the success to a strong partnership with their local public health unit, which provided resources and then let the organizations do the work themselves. “We said, ‘Let us do this and we’ll get to our people.’”

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In a written response to questions for this story, a Ministry of Health spokesperson said that 9 million people are included in Phase Two of the province’s vaccine plan, including people with intellectual and developmental disabilities, and there is “no relative prioritization within the primary priority groups.”

Individual public health units “should work to vaccinate these populations at an equitable pace, in consideration of the size of these populations and local context,” the spokesperson wrote.

Dr. Laurie Green, a family doctor at St. Michael’s Hospital, said developmentally disabled people — particularly those living in congregate settings — were misclassified from the start of the vaccine rollout. She says they should have been prioritized in Phase One.

“In terms of risk, they are similar to long-term care, but at a younger age, so using age as an exclusion-factor does them a disservice,” she said. “They are now part of the nine million people trying to be immunized by the end of June.”

While there isn’t good data from Canada on the impact of COVID-19 on people with developmental disabilities, researchers have pointed to studies from other countries to argue they should have been prioritized earlier.

A large U.S. study published by the New England Journal of Medicine found that having an intellectual disability was the “strongest independent risk factor” for contracting COVID-19 and, after age, it was the strongest risk factor for COVID-related death.

A U.K. study found that people with a “medically diagnosed learning disability” were 3.7 times more likely to die than other adults.

Among the reasons they are at higher risk is that people with developmental disabilities have shorter lifespans and become frail much earlier than the general population. They’re also more likely to have health conditions — such as diabetes, asthma and congestive heart failure, among others — that make them more vulnerable to COVID-19.

“They’re 80 at 50,” said Yona Lunsky, director of the Azrieli Adult Neurodevelopmental Centre and a leading researcher on people with developmental disabilities. “So this idea about frailty that we see in older adults, which is what makes them so at risk for something like COVID, we actually see that at a younger age for people with developmental disabilities. So if we say we’re going to give vaccines to people who are 80 and up, you’re missing the fact that someone with a developmental disability is pretty much at that same level of risk when they’re over 50.”

The U.K. study found that while most COVID-related deaths in the general population occurred in people older than 75, Lunsky said, for people with developmental disabilities, most deaths occurred in the 55-to-64 age bracket. As with other populations, living in a congregate setting also puts them at a higher risk.

For Sanders, like so many parents of disabled children, she just wants to get her daughter vaccinated as quickly as possible. Jessica’s disabilities were caused by a virus she acquired as a 2-year-old, which nearly killed her and severely impaired her brain function. “So we’re very much aware of what a virus can do and what it can take away.”

The daily stress of the pandemic has taken its toll, Sanders said, which is partly why getting vaccinated feels so urgent.

“It’s a pretty hard pill to swallow on a daily basis to know that I could go get a couple things at the grocery store and bring this home to her and have her end up where she was. So it would be nice to not have that fear every day.”

Brendan Kennedy is a Toronto-based social justice reporter for the Star. Follow him on Twitter: @BKennedyStar

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