by Yona Lunsky
When I sit down to write about the inclusion of people with developmental disabilities in Canada’s vaccine booster shot rollout, I feel a certain déjà vu. In January and March of 2021, we called on Canadian Federal and Provincial governments to prioritize people with developmental disabilities for COVID-19 vaccination and develop an equitable vaccination strategy specific to their needs. On October 29th, when Canada’s National Advisory Committee on Immunization (NACI) released their interim guidance on booster COVID-19 vaccine doses in Canada, people with developmental disabilities were not yet included as a priority group. Thus far, Saskatchewan makes explicit mention of developmental disabilities in their vaccine booster rollout, and Ontario recognizes older adults who live in “congregate care settings for people with developmental disabilities".
So once again, I am writing to ask our federal and provincial governments to provide accessible, appropriate, and timely vaccinations for this at-risk population, and consider who amongst those with developmental disabilities is at the greatest risk. The evidence is clear. We know that people with developmental disabilities are at greater risk for adverse outcomes if they get COVID-19. A large UK-based analysis last year showed that 60% of COVID-19 related deaths were people with disabilities and that people on the intellectual disability registrar were more than 8-times as likely to die from COVID-19. In the US, it was suggested that having an intellectual disability was the most common predictor of COVID mortality, besides age. In Ontario, adults with developmental disabilities were over twice as likely to die within a month of testing positive for COVID, and those with Down syndrome were more than 6-times as likely to die as other adults.
The degree of risk depends on many factors including the person’s age, the type of disability, their residential setting, and the number of health issues they have in addition to their disability. We outlined these issues in our Healthy Debate article ten months ago, and in a more extensive report published shortly after.
When someone reaches out to me, worried that they or their loved one has not been included in the guidance from NACI, or that they don’t appear in the current provincial guidance, I remind them, sort of tongue-in-cheek, that because we took so long to vaccinate this population the first time, we still have some time before they reach the 6-month eligibility requirement for a booster shot. But that time is fast approaching and so we need to begin planning how to make sure that they are included, and that barriers are removed to booking an appointment and providing accommodations at vaccine sites.
So here are some of my thoughts:
As with earlier phases of the pandemic, I look to other countries to see if we can learn from their policies.
The CDC in the US recognizes people with disabilities generally in terms of their vulnerability to COVID including all adults age 50 and up with underlying medical conditions. They also include Down syndrome on their list of eligible medical conditions for the booster shot. They also define long-term care settings more broadly than we do in Canada. They make explicit mention of people with disabilities, and not only older adults living in these settings. They even have a page defining what they mean by long term care settings: “Long-term care settings include any location where older adults, people with disabilities or chronic health conditions, or people otherwise needing assistance with activities of daily living receive services or supports. These can include both medical care and non-medical care.”
The Joint Committee on Vaccination and Immunization (JCVI) in the UK has included people who “live and work” in care homes, which in the UK includes congregate care or group homes for people with developmental disabilities. They also include Down syndrome as a medical condition and all people over 50 years of age can get the booster shot. And, it is mandated that all staff in health and social care must be vaccinated.
Both countries have also put some time into accessible communication. Here is an easy read explanation of the booster from the UK Health Security Agency. How information about vaccination is communicated to people with developmental disabilities and their allies is very important. People need to know what a booster is, why it is important, and how to go about getting one. If they have questions, they need to know who they can go to get answers. For example, earlier this year, the US Health and Human Services launched the Disability Information and Access Line (DIAL), a phone number that connects people to local and national disability vaccination resources and information. We outlined strategies in a policy brief through the Ontario Science Table in June. Whether it is about the first, second, or booster shot, these principles still apply.
So, what would I like to see happen here in Canada?
I think we have enough justification from research done here and elsewhere that adults with Down syndrome need to be prioritized for booster shots, particularly adults over the age of 40 and younger adults with significant comorbidities.
I also think we have enough evidence to know that we should do all we can to protect people with disabilities living in congregate care who receive regular hands-on support, and who have medical issues themselves, particularly as they age. This is particularly important given that in some of these settings, staff may not yet be mandated to be vaccinated. Many of the people residing in congregate care would have challenges with self-reporting and managing their symptoms if they were to contract COVID-19 and they would have a very stressful time in hospital, away from the people who know them best. Every case of COVID-19 in the home, even if it is mild, would mean that isolation protocols must be reintroduced, which can be hard to understand, and possibly re-traumatizing to people who are just getting used to being able to resume activities and be part of their community again.
I would like to see some recognition of the higher risks borne by the broader disability community as we prepare for wider distribution of the booster vaccine. This includes people with developmental disabilities and other disabilities as well. I would like to see policies that recognize this higher risk and health leaders who appreciate how difficult it has been to repeatedly feel excluded in pandemic response planning. I would like them to say: “You will not need to wait until the booster vaccine is made available to everyone and then fight for an accessible vaccination process when that time comes. We will roll things out differently this time, based on what we’ve learned. Registration will be easier and accommodations are in place. We have not forgotten you.”
For more information on accessible vaccinations, visit Ready for My Shot, an initiative working on promoting and celebrating vaccinations for people with developmental disabilities across Canada. You can also find easy read vaccine information on our H-CARDD COVID webpage.