covid death rate double for ontarians with certain disabilities: study

by: taylor blewettit’s not something you want to be proven right about.but new data underscores a reality that experts and leaders in the disability sector have been warning about for much of the pandemic, as they urge governments to prioritize the protection of people with developmental disabilities from a disease that poses a particular danger to them.after testing positive for covid-19, ontario adults with intellectual and developmental disabilities (idd) were more than twice as likely to be hospitalized, and to die, compared to adults without idd, according to a study supported by ontario research organization ices that looked at test positivity, hospitalizations and deaths in the province between january 2020 and mid-january 2021.considering just those under age 55, the likelihood of death was more than 16 times higher for those with idd.throughout the pandemic, camh senior scientist yona lunsky has been a prominent canadian voice sounding the alarm over the threat presented by covid-19 to people with development disabilities. there was pre-existing knowledge about this population to back it up — their likelihood of premature death and high-risk health conditions they experience more frequently — as well as covid-era evidence emerging from jurisdictions like the u.k. and u.s., in the absence of canada- and ontario-specific data to point to.“now that we’ve seen some of these data, we can’t say, ‘well, we didn’t know,’ or, ‘we heard about this issue … in other places, but we didn’t really know it could be an issue here,’ ” said lunsky, who led the ices study.“we know it’s not unique to other countries, it’s also happening here.”one of the things that still needs unpacking is the “why” behind the death rates observed for people with idd, relative to those without. the disability itself as a risk factor could be part of what’s happening, said lunsky. the same goes for certain co-occurring health conditions.but there’s plenty of room for other variables in the space between getting covid-19 and dying from it.the study doesn’t spell out what happened to everybody when they tested positive, lunsky explained. how far along was the disease caught? what kind of treatment did the person get right away? were they admitted to hospital on their first visit? did they have a caregiver with them who could support their communication and help manage their distress?“all kinds of things can go on that lead up to a person’s death.”olga zouzoulas’s sister was dangerously close to becoming one of the ontarians with down syndrome whose exposure to covid-19 had a fatal outcome.cbc ottawa reported in may that toula zouzoulas, 44, was on a ventilator in the icu at montfort hospital, after contracting covid-19 while admitted for another heath issue.with one exception, olga said her sister’s care at montfort was amazing. through it all, save for a few days after testing positive, toula was allowed a family member by her side, and olga believes it helped her.there was one doctor who spoke about the ventilator survival rate, and the need for olga to prepare their family, in front of toula while she was being prepped to go to icu, olga recalled. she thinks the doctor figured toula couldn’t understand.“she didn’t know her, right. she didn’t know that my sister … could very clearly understand.”(a montfort hospital spokesperson said they couldn’t comment on a specific case, but it’s common, and a best practice, “to discuss the possible outcomes of an intervention in the presence of the patient, even if it makes for a difficult conversation.”)toula ultimately pulled through and is back at home with her parents, recovering slowly. “she’s quite a strong person, that’s for sure,” said olga.but toula shouldn’t have had to fight to save her own life, in olga’s opinion. she believes people with down syndrome, and others with developmental disabilities, should have been given higher priority in the covid-19 vaccination rollout.on may 6, a month into the official start of phase 2 of the rollout in ontario, individuals with intellectual or developmental disabilities, including down syndrome, became eligible to book a vaccine appointment through the provincial system or their local public health unit if they weren’t already eligible through another category, such as receiving chronic home care (phase 1 eligibility) or living in developmental services congregate care (phase 2).olga made repeated calls to ottawa public health beforehand, but wasn’t able to get her sister earlier access to a shot.“you talk to some people and you’d be like, ‘how did you get vaccinated?’ and my sister’s still sitting there without a vaccine,” said olga.oph said friday it follows ministry of health guidance to determine eligibility for the vaccine under the provincial rollout framework, and that this guidance “is based on the recommendations of the provincial vaccine taskforce which included medical and scientific experts as well as ethicists and was guided by the province’s ethical framework and an equity lens.”gina st.amour, executive director of the ottawa rotary home, was part of a provincial advocacy effort to get people with developmental disabilities included in the first phase of the vaccine rollout in ontario. while that wasn’t what was ultimately written in provincial policy, st.amour said there were a few regions where vaccination did start earlier, targeting those in congregate care.ottawa wasn’t among them, but it was actually beneficial to be able watch and learn from what was happening elsewhere in the province, said st.amour.with data gathered from local group homes and agencies in the developmental services sector, the rotary home approached oph and made their pitch.“here’s all our data, here’s our powerpoint presentation. we know where people live. we know their postal code. we know their risk-based level. make us a vaccine distributor, and we will vaccinate those individuals with developmental disabilities, starting with those in congregate care,” st.amour recalled.oph agreed, and as a formal community partner, the rotary home launched into a vaccination blitz with their first delivery of doses on april 21 (in the end, they received close to 2,000 to distribute). the goal was getting shots in arms, as quickly as possible, wth a focus on those with needs that a mass vaccination clinic would be hard-pressed to accommodate.“we did whatever was needed. we went to group homes. we went into people’s backyards. we went into their bedrooms, if that’s where they were most comfortable. and so we had lots and lots of little clinics to accommodate, and be person-centred, and whatever that person needed,” said st.amour.for dewlyn lobo and her mother, anna, there were logistical as well as personal challenges to surmount before dewlyn got her shot at one of ottawa’s mass vaccination sites.they were told during the appointment-booking process that dewlyn, who has down syndrome, needed a doctor’s note — though they were never asked to show it at the vaccination site. they also wanted to get vaccinated together, but couldn’t. anna and her husband were eligible earlier because of their age.“we never go separately. we always go together. it’s a support for dewlyn,” said anna.then, there was dewlyn’s fear of needles. but what scared her as well was getting covid-19, and the prospect of having to be alone if she were admitted to hospital. so in the end she went for it — and feels “very happy” about her decision.“i have a bucket list of different places to go to, and a bright future for myself,” said dewlyn, who is first vice-president of people first of canada, a national organization representing people with idd.the 34-year-old advised other people with down syndrome not to be left with regrets about not getting vaccinated.“keep yourself safe, and make sure other people are safe too.”

courtney weaver, a 29-year-old federal public servant diagnosed with asperger syndrome, described making the vaccination leap despite some initial hesitancy after “hearing from legit sources about the benefits of the vaccines and also taking in my mom’s and dad’s experiences with the vaccine.”for others on the autism spectrum, said weaver, who might not be able to connect with abstract arguments in support of vaccination, it could be helpful to put it in more personal terms. “the sooner that you get the shot, the sooner you’ll be able to do more of the activities that you want to do,” weaver suggested.while there remain some people with developmental disabilities who have yet to access covid-19 vaccination,  the frantic, fear-filled early days of the vaccine rollout are now in the rearview.as of aug. 8, ices reported that first-dose vaccine coverage was up to 76 per cent for adults aged 18 to 64 with an intellectual or developmental disability, while 65 per cent had both doses. for those older than 64, second-dose coverage sat at 83 per cent.looking to the future, and the possibility of covid-19 booster shots being offered somewhere down the line, st.amour hopes there won’t be a need to fight again for acknowledgement of a community that still doesn’t feel top of mind.“we want to see that we are recognized as an important part of the population that needs special attention.”