Pandemic has been 'very hard' on families of people with Down syndrome, advocate says

When the Down Syndrome Association of Hamilton was forced to close its office during the first wave of the COVID-19 pandemic, Jennifer Crowson knew how challenging it would be for those with the disorder to not be able to physically connect with their friends.

Crowson has an eight-year-old son with Down syndrome. She also chairs the local association that provides support and social time for families. 

The association has tried to introduce some online activities, Crowson says, but a lot of the younger kids weren't interested, and it was hard to engage them. Closing the office, she says, has been "a massive change." And for many kids with Down syndrome, she says, online school is hard. 

"It has meant sort of increased isolation for our community who are already an isolated community," Crowson told CBC News.

The office "was a gathering space where we were able to host social nights," she said.

"We were able to host educational nights. We hosted a literacy program for our membership, which was really, really important, and we've had to put all of that on hold. We have not been able to get that up and running again, obviously, because of the current situation and restrictions around public health. 

"What that has meant for our membership has been a loss of that social network, both for our individuals with Down syndrome, but also for their family members."

No interest engaging with online community

Crowson, a lecturer at the school of social work at McMaster University, says online learning has been "very hard" on her son, Owen.

"I mean, he's fabulous, but we've had to figure out online school," she said. "I work full time [and] I have three children who are all now trying to figure out online school and Owen, he tries … but he needs help, he needs me sitting beside him."

"I know he would do better if it was in-person [learning]. For example, yesterday I was working all day, so my older son helped him, but that meant he was stepping away from his schoolwork.

There's a real fear that our children get left behind and that their education is going to suffer.- Jennifer Crowson

"So, we're doing our best. He asks me almost every day for a play date, and I can't make that happen. You know, so he's missing out on that kind of social piece that he might have otherwise had right now. It's not been ideal, but we're doing our best."

Crowson said it's a similar situation for other members. They have told her that their kids with Down syndrome "are really not interested in engaging with this online community." 

"So it's been isolating for them," she said.

Crowson is worried that the long period in isolation could see children with Down syndrome getting further behind with the education.

"Children with Down syndrome do have intellectual delays, which makes learning harder for them," she said. 

"Parents and people with Down syndrome are already facing that additional challenge in their education, and with this pandemic and with all of the changes that to be made to how people are educated, there's a real fear that our children get left behind and that their education is going to suffer."

DS population disproportionately impacted by pandemic

Laura LaChance, interim executive director of the Canadian Down Syndrome Society, said families are of the view that people with Down syndrome have been disproportionately impacted by the pandemic.

But she said the impact has more to do with the quality of daily life as opposed to disproportionate impact of a high number of people with Down syndrome contracting COVID-19.

"Routines have changed. Everything's shut down. You can't go anywhere. You sometimes can't have support people. It's put extra strains on families and caregivers," LaChance said.

"Those are the things that are severely affecting our population and those with other intellectual developmental disabilities."

COVID-19 has also created another source of worry for families of individuals with Down syndrome.

Studies on the impact of COVID-19

Recently, several studies out of the UK have suggested that people with Down syndrome are at a significantly higher risk of severe illness and death if they are infected with COVID-19.

But LaChance said the studies have reported on the adult population. 

"To date, as we know it, there is no study or recommendation for vaccine allocation for children with Down syndrome, in fact for any child, Down syndrome or not," she said.

LaChance said the CDSS has had discussions with senior policy advisors (vaccine-specific) from the office of Minister of Health, Patty Hajdu, with regards to requesting a revision of COVID-19 vaccine priority allocation to include priority access for adult individuals with Down syndrome.

She said senior advisors have promised CDSS a connection to the National Advisory Committee on Immunization (NACI). 

Vaccine prioritization

"We continue to await an opportunity to ask for a revision to the Canadian Guidance on the prioritization of initial doses of COVID-19 vaccine(s) document to follow the lead of the US Centre for Disease Control (CDC) and other respected medical advisory bodies," LaChance wrote in a recent circular to members. 

In its Dec. 29 guideline, the CDC said adults of any age with certain underlying medical conditions are at increased risk for severe illness from the virus that causes COVID-19.

It said mRNA COVID-19 vaccines may be administered to people with underlying medical conditions provided they have not had a severe or immediate allergic reaction to any of the ingredients in the vaccine.

LaChance said while the UK and Germany have implemented the CDC recommendations, the Canadian guidelines are yet to reflect this.

But LaChance said she is hopeful that it soon will.