People with developmental disabilities should be prioritized for COVID-19 vaccine, say advocates

Kelton Broome sweats during interval training with Special Olympics NWT in a large Yellowknife gym. For most of the pandemic, group activities like this were stressful for him, but since getting a COVID-19 vaccine, he feels safer.

"I feel really safe, even though I only had just one shot so far," said Broome, 25. "If I got sick, my immune system isn't as good as others."

He has autism and gross and fine motor skill delays, which means things like walking up and down the stairs can be difficult, as is unlocking a door. He also has a tendency to get sicker for longer than others, said his mother. 

"It can be pretty scary," Broome said via Skype about COVID-19.

Broome lives with his mother in Yellowknife and functions with skills that range between a five and 25-year-old.

While he did get the vaccine, there is concern among advocates that others with developmental and intellectual disabilities — who don't fall into existing priority groups, such as seniors or those living in long-term care facilities — can be at higher risk for contracting COVID-19 and are unsure when they'll get access. 

Much of that risk comes from necessary supports that can't be accessed remotely.

Like many people with developmental and intellectual disabilities, Broome needs help from people outside his household: support workers drive him to work and help him handle money when shopping, and he has a job coach at work. This makes physical distancing difficult.

"He can't function without support," said his mother, Barb Kardash, who is grateful Broome has his first dose.

"What a relief. You know, just that extra layer of protection."

May not realize the risk

Late last month, 23 clients and dozens of staff with Inclusion NWT, a group that supports people with intellectual and other disabilities, got the Moderna vaccine, according to the organization.

However, people who aren't linked to advocacy groups could still be been left out.

"If we're looking at people with developmental and intellectual disabilities living at home, they might not even realize that they're at risk and neither do their families," said Denise McKee, NWT Disabilities Council's executive director.

"These are the groups that we have to be reaching out to."

Both Inclusion NWT and the NWT Disabilities Council wrote letters lobbying to make people with disabilities a priority. The territorial government included them in its vaccination plans, in the category of "congregate settings," which was for facilities where people live or stay overnight and used shared spaces. People in remote communities have also been offered the vaccine.

We've done everything we can to put them as a priority. ​​​​- Dr. Kami Kandola, N.W.T. chief public health officer

Dr. Kami Kandola, the N.W.T.'s chief public health officer said adhering to public health measures like wearing masks can also be challenging for some people.

"They don't always have a choice of who enters into the home or have a choice about limiting their personal space," said Kandola.

She said anyone in the N.W.T. who has a developmental and intellectual disability and doesn't fit into a priority group can reach out to her office to make a request for the vaccine.

"We've done everything we can to put them as a priority," said Kandola. 

While that was possible in N.W.T., where one in four people have had their first dose, it might not be so easy in more populated parts of Canada which have much lower per-capita access to vaccines.

Still, national advocates want people with developmental disabilities made a priority in early vaccination efforts elsewhere.

People with Down syndrome at much higher risk

Inclusion Canada, a national federation that works on behalf of people with developmental and intellectual disabilities and their families, says to its knowledge, currently no region in Canada has made the clients it represents, who live alone or with family, their own high-risk priority group.

The focus has mostly been prioritizing long-term care residents and staff, and other congregate living facilities and designated supported living facilities, said Krista Carr, Inclusion Canada's executive-vice president.

"People with Down syndrome are four times more likely to contract COVID-19 and over 10 times more likely to die from COVID-19," Carr said, citing research published last fall. While that study is specific to those with Down Syndrome, Inclusion Canada says more generally that people with disabilities tend to be more vulnerable to disease at younger ages than the general population.

It's not always clear in the rollout plans who is included in vulnerable population vaccine priority groups, said Carr.

"If you look at all the jurisdictions and the vaccine prioritization, the information they do have available, you rarely actually see disability mentioned at all ...That causes a lot of fear and anxiety for families," she said.

"This is obviously a life-and-death issue."