As COVID-19 vaccine distribution and prioritization plans roll out across Canada, people with developmental disabilities, their families, support workers and community agencies have been asking: What does this mean for us?
Despite international evidence that COVID-19 presents greater risks for people with developmental disabilities, as a country we have been fairly silent about this throughout the pandemic. Vaccination prioritization efforts from other countries such as the U.K., the U.S., Sweden, Germany and the Netherlands include adults with developmental disabilities in early phases of their vaccination rollout. Although we have mandated collecting and reporting information on other vulnerable groups in Canada, we have not done so for people with developmental disabilities or disabilities more generally. Does it then come as any surprise that they are not yet mentioned in our vaccination policies?
Current federal guidance for prioritizing the vaccine mentions age, congregate care and other high risk conditions but each of these have important nuances when it comes to developmental disabilities that are important to understand as the provinces and territories outline their prioritization processes.
Age: If our priority is older adults, assuming that all people age in the same way ignores a very important finding: Whereas the general population shows signs of frailty at age 80, people with developmental disabilities show this at age 50. Furthermore, people with developmental disabilities are nearly four times as likely to die prematurely as other adults. This is especially relevant when considering the impact of COVID-19. The largest number of COVID-related deaths for people with developmental disabilities occurred in the 55–64 age bracket while the 75+ age bracket was most at risk in the general population.
If we prioritize people for the vaccine based on their age, we need to start younger for people with developmental disabilities.
Congregate care: The people at greatest risk have been living in our long-term care facilities. However, these are not the only congregate care settings requiring our attention. Some adults with developmental disabilities live in large congregate care settings while many others live in smaller community homes with multiple support staff coming and going on a daily basis. Research from other countries has shown that adults with developmental disabilities living in congregate care settings, including group homes, are at greater risk of death from COVID-19, and this risk increases with the size of the setting. We have rightfully prioritized older people who live in congregate care and the staff working in these settings to receive vaccines. What needs to be made clear is that people with developmental disabilities and their staff in group residences are also a priority group.
Other high risk conditions: The federal vaccination prioritization document mentions people with other high risk conditions (to be defined as evidence evolves). It is important to recognize specific health conditions that put some people with developmental disabilities at increased risk for severe illness and death from COVID-19. One such condition is Down syndrome; people with Down syndrome had a 10-fold increased risk for COVID-related death in the U.K. during the first wave of the pandemic. Another condition prioritized in the U.K. vaccination distribution strategy is severe to profound intellectual disability. People with this diagnosis have a range of medical issues, may have difficulties with social distancing and masks and rely on a high level of hands-on care from others. Epilepsy, dementia, dysphagia and psychiatric disorders have also been found to be associated with COVID-related mortality in adults with developmental disabilities.
If we don’t count them, they don’t count: Although we are not yet tracking the impacts of COVID-19 on people with developmental disabilities, we can and must learn from research in other jurisdictions. These findings should be integrated into current vaccination planning, but until something gets documented in Canada, we really won’t know what is needed. Indeed, not communicating anything about a marginalized group communicates a great deal. To people with developmental disabilities and their families, it says that they are not important. Not counting means not valuing, not learning and not doing.
These “errors of omission” have occurred countless times before and will no doubt occur again. While we wait to learn whether and how people with developmental disabilities will be prioritized, we can work closely and carefully with them, their families and their staff to demonstrate that they matter. We need to work with these communities to develop clear and tailored communication about vaccines that addresses their concerns. Self-advocates and families have reminded us that such information should not just be posted on the internet, which many of them cannot access but should be printed, mailed and available to watch on video. Healthcare providers should be prepared to have these important conversations while vaccination centres should ensure the information is accessible to everyone.
Canadians with developmental disabilities and those that care for them and love them have felt forgotten throughout this pandemic. Let’s change that by remembering them now in our vaccination policies and practices.
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Hello i would like to if i have a developmental disabilityd do i have to take the covid vaccine.i am also afraid to the the vaccine because every month i have my period am pass clots.
I cannot believe all these people that are too weak to social distance, keep their windows open to disinfect air with sage, disinfect homes. I am not getting the vaccine that has no proper research and development done to it. You are all being duped. I was sick in Feb 2020 before our lockdowns happened in Ontario, Canada, I phoned all my symptoms into my neuro team and health Canada they wanted me to go to the hospital to get tested but there was no way I could go without infecting someone else. I already did a couple of quarantines working for Sunnybrook & Women’s Foundation and have pharmaceutical experience in the labs. Plus, in-house vet hospital experience as well life-saving certified. So, I stayed home and waited out for my nurse to bring me food, essential items I could not get out to shop for. My doctors phoned in prescriptions to fight it. Took me 2 weeks to come out of it and a couple of months to get up and about again. But I also have inoperable untreatable brain cancer I use cannabis products for. So for all of you getting the vaccines, what you should really find out is those vaccines are not going to protect you from transmitting it or getting it. What’s the point of it? The point is a couple of pharma companies lost billions of dollars, and law enforcement has many super old cold cases to shut, so they have partnered with the CIA, big tech, big pharma, and corona virus is real, it’s easy to treat with Ivermectin in cattle, and other herds, this one is human form the SARS Corona so it seems like someone was messing around and let the cat out of the bag in a ventilated space where there are public masses. That is how it’s spread. Not by someone eating bats at a Chinese wetmarket because bats have no meat or animal proteins. JFC people will believe anything an animal rights activist tells them. That’s why you are all being evicted from your homes. Because you have not read Peta, HSUS, HSI Agenda with the Green New Deal. You are being led down a path you have no idea you are going.
I am a parent caregiver of two special needs teens. Having to place support services on hold to protect us I have been caring for the boys alone for a little over 365 days. That is 365 days without a day off. My boys can’t wear a mask or social distance as they live with Global Developmental Disabilities. We are at risk from the virus and at risk if my health should give way. Feeding, washing, dressing, nursing and entertaining without a day off in sight. We are not being prioritized properly for the vaccine. I am a parent who lives with deformities to 3 of my limbs. If I fall we all fall and yet those who prioritize vaccine distribution do not consider us to be urgently vaccinated.
My son’s boys 17 and 18 have severe developmental disabilities. There mother left at the start of the pandemic stating that she no longer wanted to care for the boys. She has not returned. My son was born with physical disabilities however is very intelligent and studied in Toronto. For the last year he has cared for the boys on a 24/7 basis, this means, wash, feed, entertained, loved etc. He is 50 years of age. He has spent the last month trying to send a message to the Premier, health officer, health services etc. that there is an urgent need for the boys and especially him, the care giver, to get the vaccine. He is answered by either the person not returning a call or a person with a script that tells them to tell people that the province has a plan. Voices of the parents taking care of their disabled children are not heard. The leaders are both blind and deft to the reality of how the parents (care giver) work as and his exhausting and tiering and will lead if not supported to heart attacks or worst. What will it take to be heard. My son lives in Cornwall, Ontario. His case and the case of other parent-care givers are urgent. I would be surprised if I receive an answer or acknowledgement to this comment.
How can we go about advocating for our adult children with developmental disabilities to receive the vaccine ASAP? My daughters have 3 staff providing supports to them in a condo and as well, we provide support. We are extremely concerned for their safety as well as own own as we are both seniors.
This is a terrific article.
What is Ontario’s response to prioritizing group homes like Ongwanada’s? Where does my 74-year-old profoundly-challenged brother, living in an Ongwanada group home. fit in the government’s list right now?
Does he fall into Phase 2—with the general population?
Any information gratefully received.
Thank you for this article. My office is writing a letter to the Minister of Health asking her to measure the impact of the pandemic on people with intellectual disabilities and to prioritize them in the vaccination program.
What can parents do to help protect their children with developmental disabilities & ensure they are vaccinated as a priority, as well as their caregivers, who are working hard to protect them?
Thanks for remembering people with disabilities and trying to change the order they are doing things in!!! This vaccination is of utmost importance for people’s health and well-being!!!!! I do agree that we need to make it clear that we are a priority as well!
have you made the Ontario newspaper aware of this article which demonstrates, yet again, people with disabilities remain somehow invisible to the general public….there are several seniors with DD in Community Living type environments.
Perhaps a strongly worded email to all the Ontario Health Units, who are ultimately prioritizing the distribution of the Covid vaccinations when they become available to the remaining Ontario residents, province wide.
Susan Barnes-Parsons, sister to my 74 year old DD brother, living in Ontario.
Thank you for your article. As a parent of a dual diagnosed developmentally disabled person living in a group setting I am extremely concerned that they are once again an invisible forgotten population. Not only are they at high risk for COVID the extreme isolation conditions they are living in exacerbates the presentation of their psychiatric symptoms.
Thanks for sharing this info. Greatly appreciated!
Dear Yona and Muhammad Irfan
As a parent of an amazing 38 year old daughter who has been labelled with a developmental disability, I commend you and appreciate you bringing this concern forward. With all the advocating we have done over the years to ensure all people are seen, heard and valued for the gifts that they bring to society, the situation we are in presently indicates that more advocacy in still needed. Thank you and well done!!!
Thanks for your great work.
Thanks for this viewpoint. At all levels, advocacy has been needed throughout the pandemic to include persons with developmental disabilities and those who support them.
There is no factual basis for saying that the true goal is population reduction nor is there any support for your statement that there is a covert genocide.
Thanks for this viewpoint. At all levels, advocacy has been needed throughout the pandemic to include persons with developmental disabilities and those who support them.
We need early vaccines for our disabled population
Thank you for this very informative article. Without being alarmist, you have provided straight forward information. I will be sharing this with the board of EDCL which I chair on Jan 26. Do you ever present to groups by zoom who advocate for those living with disabilities.
Thank you so much for this information.As someone immersed in the disability community both personally and professionally,this information is most valuable.
Can’t agree more with this. In the vulnerable group, seniors and other medical fragile people can make noises, they can speak up for themselves. People with intellectual / developmental disabilities cannot, they are quiet, they are overlooked “naturally”. At the same time, people with these disabilities don’t know / understand how to protect themselves, they actually at higher risk than most of the other people. Thank you for the article, hopefully it will make some impact on government considerations.
how true
Thank for this article. It is a long time coming. Ford and Trudeau and Kenny are ignoring the disabled calls, texts and emails.
Changes to Medical Assisted Death C7 legislation will save the government 149M in 2021 and the Liberals did not want to give the Bill any more time for debate in HOC and ignored the pleas from the disabled. So off it went to the Senate and was expected to pass before they all jetted off around the world.
My concerns are similar to what is stated in this article, but I will take it one step further.
Everything that has been done and said by our PM MPs etc for the pandemic have been half measures and caused confusion in order to gas light the public and distract from the covert genocide of #vunerabmes currently underway, with the true goal of population reduction.
We are now at the start of the 4th Industrial Revolution, meaning AI, and robotics will take over our jobs that will never fully come back from the Pandemic mass layoffs
You will notice most funding programs currently offer by gov have been for the youth / families and leave disabled living 45% before the proverty line
As a result the government has written people aged 30+ off as they already spoke of the dark winter to come. A winter that they caused by their actions and inactions
Trudeau is speaking in July 2021 at the Ones Young WORLD summit, a summit of youth leaders setting the agenda for 2030 and beyond.
So yes we need a plan for the disabled desperately and must stop the covert genocide
Excellent article and also reply Janet, couldn’t agree more. Discrimination towards people with developmental disabilities is something so apparent in our society and our elected officials should be cognizant of this and act.
There is no factual basis for saying that the true goal is population reduction nor is there any support for your statement that there is a covert genocide.