`WE'RE JUST HOLDING ON'
Those with developmental disabilities need to be prioritized, say advocates
Activists for those with developmental disabilities are urging authorities to prioritize vaccination for group home residents, saying COVID-19 has hit them particularly hard.
For Colin Dow and his mother Marilyn, a decade's-worth of Saturdays were spent the same way.
From Colin's Ottawa group home, they would travel to Bayshore Shopping Centre to walk around and have lunch at the food court. He'd order the same thing consistently (chicken nuggets) but sample from the plates of others joining the fun that day — a close family friend, one or both of his brothers. And Colin would buy a CD or DVD at the mall, because music is his life.
The 34-year-old lives with a severe form of cerebral palsy, and requires total care. While his speech has limitations, he talks and laughs and of course, makes song requests (he grew up listening to his mom's music, but Marilyn says he's moved on to more “modern” tunes thanks to the influence of group home staff, and sometimes asks to listen to things she's never heard of.)
Music, at least, remains part of Colin's routine — but Saturdays are different now. His mom Skypes with him about once a week, and was able to watch him open his Christmas presents through the front window of the group home. But the COVID-19 pandemic has meant 10 months without being able to hug her son.
“Things will get back to normal, but right now it's difficult,” said Marilyn. “He doesn't know the reason, he doesn't know there's a virus going around, he just knows his (life) has changed, but he can't internalize why.”
Colin is one of tens of thousands of Ontario adults with developmental disabilities — people whom experts say face elevated risk of contracting COVID-19 and dying from it, but who've also suffered greatly because of measures employed to guard against the virus, from the cancellation of community programming to the confinement required when a COVID-19 case is identified in a congregate care home.
As the global pandemic and vaccination campaign have progressed, calls have accumulated to prioritize vaccine access for people with developmental disabilities. They have seen no explicit mention in the federal or Ontario documents laying out priority groups for vaccination.
“I think the biggest thing that I've heard, sort of across the province and from families and from our sector of congregate care and developmental disabilities, is that our community itself has not been named,” said Gina St. Amour, executive director of The Ottawa Rotary Home, which operates residential and respite programs.
“You don't see it in the materials. You're not seeing it in the policy information that's coming down. So everybody's always worried: Are we being considered, or are people with developmental disabilities (being) forgotten?”
Ontario's ministry of health confirmed that adults with developmental disabilities fall into two of the groups who will be eligible to receive vaccines in Phase Two of the Ontario immunization program, which could begin as early as March: “individuals living and working in high-risk congregate settings” and “individuals with high-risk chronic conditions and their caregivers.”
The province also lists older adults (starting with those 80 and older), front line essential workers, and “other populations and communities facing barriers related to the determinants of health across Ontario who are at greater COVID -19 risk” as groups eligible for Phase Two vaccination. A ministry of heath spokesperson told this newspaper that all the groups have equal priority.
“We just really feel strongly that our sector, people with developmental disabilities and the front line employees ... they really should be considered at the very first part of phase two,” said Janet Noel-Annable, CEO of Christian Horizons. The organization supports people with developmental disabilities across Ontario, and has about 25 group homes in the Ottawa-Kingston area.
“For folks with developmental disabilities, not only are they dealing with the loss of all of their community activities, their job, their loved ones, visiting and doing things with the people that are important to them,” said Noel-Annable — they're now spending their time at home, and if there's an outbreak in the residence, within the four walls of a bedroom.
Employees, meanwhile, worked through outbreaks in full PPE, putting in 12-hour shifts and trying to find ways to keep residents engaged, said Noel-Annable. When there was a particularly bad outbreak in one community, Christian Horizons employees moved in from elsewhere to provide support. And then, there are the family members — she recalled how someone constructed a deck last summer to facilitate distanced outdoor visits.
“Everybody just rallied together and has made this work. And it feels like, you know, we're just holding on and we just need those vaccinations so badly.”
According to Ontario's Ministry of Children, Community and Social Services, there have been 579 COVID-19 cases and 20 deaths among people with developmental disabilities at ministry-funded group homes over the course of the pandemic. What's not captured in these totals, however, are those living elsewhere, in the community or with family.
Canadian data about COVID-19 infection or death among people with developmental disabilities is scarce, but studies in other jurisdictions show that members of this population are at greater risk. That's according to a recent paper by Yona Lunsky, Director of the Azrieli Adult Neurodevelopmental Centre at CAMH, and several others, about evidence to support prioritizing this group in Canada's vaccination program.
Important to consider, the authors say, is that adults with developmental disabilities show signs of frailty earlier in life, and are much more likely to die prematurely. There's also the high-risk health conditions seen more frequently in people with developmental disabilities.
Rachel-Iris, a 27-year-old woman living in an Ottawa group home, said she worries about the possibility of a COVID -19 outbreak “every single day.”
She lives with a developmental disability and has a compromised immune system. While she said the home's staff are really careful, “I wish — this is not logical, but in my head it is — I wish the staff could live here, and that would be more of a safer thing for us.”
She has questions, and some fear, about the prospect of a COVID-19 vaccination. But when life regains some semblance of normalcy, she said she really wants to go back to her day program.
“That's what I love, that's what I like doing.”
Kory Earle, 35, said he, too, initially had concerns about the vaccine, because you hear “a lot of different myths about it.” But after asking questions and learning more through his workplace (he works at a long-term home in Eastern Ontario), he decided to go for it — and described the experience as probably one of the best he's had with needles, that's left him “more confident than ever” and feeling hopeful about the future.
Earle has an intellectual disability, and said he would strongly encourage others with developmental disabilities to learn about the vaccine, and to access education they can understand. They should be a top priority in the vaccination queue, he believes.
“People with disabilities are living day by day,” said Earle. “Their lives hang in the balance, and having this vaccine will hopefully improve their lives for the better.”
David Ferguson, executive director of the Ottawa-Carleton Association for Persons with Developmental Disabilities, said information has been shared provincially that if there's excess vaccine supply that needs to be administered within a certain time frame, agencies in the developmental services (DS) sector may get a short-notice call from public health with doses on offer.
And to Ferguson's knowledge, those calls have already been happening in certain communities in the province, such Windsor and Guelph — well in advance of the scheduled start of the Phase Two vaccine rollout.
“Would I prefer it now, would I prefer it sooner? I think everybody would, and I agree with that,” said Ferguson. “But we're continuing to lobby to say, move us up in the list.”
Vaccine-related information is available for people living with developmental disabilities and those who care for them, including easyread information booklets on the H-CARDD program website, and an array of COVID-19 resources at Connectability.ca.