200 Manitobans with intellectual disabilities, sensory issues still waiting for COVID-19 vaccine

Advocates for adults with intellectual disabilities in Manitoba are calling on the province to provide a mobile vaccine service to about 200 people with sensory issues who are still waiting for their first dose. 

Participants in the province’s Community Living DisAbility Services program, who live with an intellectual or cognitive disability and need support with basic needs and care, were prioritized for their first COVID-19 vaccine doses in mid-March, along with people with serious health issues. Most live in 24/7 shift-staffed homes in the province and have several medical conditions as well.

All Manitobans age 12 and up are now eligible for a first dose of a COVID-19 vaccine. Many are already eligible for their second dose.

The majority of roughly 7,500 people who receive support through CLDS have been able to get their first dose at vaccination supersites or clinics, according to Abilities Manitoba, a coaltion of non-profit services for adults in the province with intellectual and developmental disabilities.

But about 200 people have sensory issues that would make the experience at a vaccine site too overwhelming and stressful. 

“There are people that have decided they do want to get vaccinated and were told that they were in the first priority group and continue to wait. So [it’s a] significant impact,” said Margo Powell, executive director of Abilities Manitoba.

“I can’t think of a logical reason that would put people’s fears at ease that are still waiting. It seems like people have been forgotten, in some sense.”

‘June already, and no 1st dose’

Mobile vaccine immunization teams have been visiting people living in congregate settings in the province since February, including personal care homes, shelters, independent living facilities and foster homes.

A spokesperson for the province said each regional health authority has a plan in place to reach people who need a home visit and “any suggestion of ignoring individuals with developmental and cognitive delays and sensory issues is completely inaccurate.” Those who have not been able to be vaccinated at a site in the community should contact their community service worker to discuss other options, the spokesperson added.

Powell said she’s also been told by the province that a plan is in place. One of the factors in the delay could be the relatively small number of people per site needing mobile visits, who can be spread out across vast areas, she said.

“They don’t want to waste doses, so you have to administer all the doses within a certain time frame. Once you’re mobile and literally going house to house, it does take co-ordination so vaccine isn’t wasted,” she said.

“I do understand that, but it’s … June already, and no first dose.”

Some people with intellectual disabilities can be sensitive to stimuli like crowds or unfamiliar places. ‘Supersites offer all of that,’ says the senior director of support services with Winnipeg’s Arcane Horizon. (Jeff Stapleton/CBC)

Staff at Arcane Horizon, which supports adults in Winnipeg with individual disabilities living in group homes, have not had any luck with the number provided for vaccine support.

“As of late it’s been hard to get anyone to call us back,” said Chris Bauer, senior director of support services with the agency. 

Home vaccinations preserve dignity: agency director

He said while the majority of the 68 people in Winnipeg his agency supports have been able to get their first dose at supersites or clinics, three others — who all live in the same group home and want the vaccine, but don’t use conventional language — have not.

“Some of the people that we support are very sensitive to stimulus … [which] can be a group of people, a foreign place they’ve never been at before — supersites offer all of that,” he said. 

That means an injection could be traumatic, he added, and people may have a strong verbal or physical reaction.

“When that happens in the community as a whole, in front of people who don’t really understand what’s going on especially, it just further creates stigma towards vulnerable people.”

Home visits for vaccination would not only be a practical solution, he says, as they’re more likely to be successful, “but getting the home visits helps preserve their dignity.… People deserve to be treated with dignity.”

Until everyone vaccinated, ‘it’s not good enough’

He hopes mobile visits for vaccination happen soon, as COVID-19 testing did earlier, because waiting is dangerous — many group home staff work multiple jobs. Some are still unvaccinated.

“We have vulnerable adults who don’t have any vaccines whatsoever in their system, trying to fend this stuff off,” he said, adding there have also been COVID-19 outbreaks in homes.

Individuals who are unable to give informed consent for the vaccine have consent provided by a public trustee or family member, he added.

‘Until everyone in Manitoba — vulnerable or not’ who wants to be vaccinated gets both doses, ‘it’s not good enough,’ says Arcane Horizon’s Chris Bauer. (Submitted by Chris Bauer)

A provincial spokesperson wrote that there have been several strategies to help Community Living DisAbility Services clients get vaccinated, including dedicated times this past week at the Leila supersite for group bookings, with program staff available on site. 

Bauer agreed the Leila site has been helpful for many adults, especially in providing quiet rooms and extra support. He said his agency and many others are eager to work with the province and health authorities to co-ordinate mobile visits for the those who need them and are still waiting.

“The people that we are supporting, they are at the mercy of what their staff are doing as far as vaccines go,” he said. 

“Until everyone in Manitoba — vulnerable or not — until they get both doses of the vaccine if they want them, it’s not good enough.”