By Yona Lunsky
On the heels of my good news blog last week, I am back with a blog update that unfortunately mostly falls into the bad news category.
In May of this year, I wrote a blog highlighting the vaccination rates among Ontario adults with developmental disabilities as of May 8, 2022, from the ICES COVID-19 dashboard. The numbers revealed that a substantial group of people with developmental disabilities in every age group remained unvaccinated and not as protected as they could be. And, while the courses I talked about in that blog are now over, amongst the more than 1,000 people with developmental disabilities, families, and care providers from across Canada who have taken our courses since 2020, vaccines were a major topic of concern.
Recently, the ICES COVID-19 dashboard released updated numbers up to July 31, 2022, and the picture is not that different. However, what has continued to decline since May is the state of our healthcare system. We are seeing staff shortages and longer wait times in emergency departments across the country. We continue to hear about high numbers of people in hospital, who cannot find appropriate places to be discharged. In addition, we are still seeing people getting COVID who need healthcare because of it. This reinforces the need to pay attention to vaccines and the reason I am re-upping this blog post.
Below, I highlight the new numbers from ICES in red. But the message is the same: there is still more we need to do to get our developmental disability community vaccinated. Please share the strategies and resources in this blog with your networks.
Vaccines and Developmental Disabilities: Our work is not done
May 2022; updated August 19, 2022 [updates in italic)
I have the privilege of working with some outstanding people with developmental disabilities, family caregivers, clinicians, and scientists on a project where we co-design and co-teach virtual courses to support the developmental disability community from across Canada through this next stage of the pandemic. On Tuesdays, we teach families; on Thursdays, we teach self-advocates; and on Fridays, we teach health and social service providers. By leading these courses at the same time, we have been learning on the ground about what is happening in different parts of the country, and what some of the common worries and concerns are from the developmental disability community right now. In this blog, I want to focus on one of these issues – vaccines for people with developmental disabilities - and some lingering questions I have.
In our courses, almost all of the participants from across Canada are reporting that they have had three doses of the COVID vaccine. While this is great news, many participants are not at ease. They want to know when they will be eligible for a fourth dose and why decisions about eligibility do not take into account someone with a developmental disability who might be younger than the provincial cut-off but are at higher risk because of other health conditions or where they live (e.g., congregate care). I want to be able to tell them that people with developmental disabilities are not prioritized because their three-dose vaccine offers adequate protection. But I can’t tell them that for certain because I don’t actually know how people with developmental disabilities have fared with three doses. We do know that even a “minor” course of COVID can have serious consequences for people with developmental disabilities, both emotionally and physically, which can lead to challenges including having to visit the hospital. And one thing I have learned during this pandemic is that it matters when we can prevent any hospital visit, especially if the person can’t have a support person with them (which sadly can still happen).
I would like to say that we do not need to worry about people with developmental disabilities right now because, like those involved in our virtual courses, the majority of them have had their third vaccine or their fourth if they are eligible. But I cannot say that without the data to support it. I have no idea what their vaccine rates are in the rest of the country because to my knowledge, it is only Ontario that is counting and sharing that information with the public. The ICES COVID dashboard includes findings on priority groups for vaccination in Ontario, and these regular reports include developmental disabilities. These reports tell me that the people in our courses may not be representative of everyone in the province.
Here is what we know from the ICES COVID dashboard posting on Friday (up to May 8th):
- Of the 11,238 adults over age 60 (all eligible for the fourth dose), 94% have had one vaccine, 93% have had two, 80% have had three, and 18% have had four.
New numbers as of July 31, 2022:
Of the 11,528 adults over age 60: 94% have had one vaccine, 93% have had two, and 81%, have had three; fourth doses increased from 18% to 37%. This is a very high-risk group of individuals. It is good to see that some of them have received their fourth dose, but it is still only 1/3 of this population.
- Of the 86,670 adults between 18 and 59 (all eligible for the third dose), 85% have had one vaccine, 83% have had two, and 54% have had three; 1% of adults in this group have had four vaccines. This means that almost half of eligible adults under age 60 did not receive their third shot.
New numbers as of July 31, 2022
Of the 87,886 adults between 18 and 59: 86% have had one vaccine, 83% have had two, and 55% have had three; fourth doses have gone up from 1% to 7%. There was no improvement with the first three doses, but a small group of people got their fourth. We need to see third doses go up as well as fourth doses, for those eligible.
We can’t report on children and youth with developmental disabilities separately, but we can report on young people with Down syndrome:
- Of the 1,028 teens (12 to 17 years of age) with Down syndrome, 80% have had one dose, 77% have had two, and 26% have had three.
New numbers as of July 31, 2022:
Of the 1,025 teens (12 to 17 years of age) with Down syndrome, 79% have had one dose, 76% have had two, and 26% have had three. So, very little change.
- Of the 1,206 kids (5 to 11 years of age) with Down syndrome, 54% have had one dose and 41% have had two.
New numbers as of July 31, 2022:
Of the 1,210 kids (5 to 11 years of age) with Down syndrome, 53% have had one dose and 42% have had two. Also, very little change.
Interpretation: there is still a substantial group of people with developmental disabilities in every age group who are not as protected as they can be.
Could we have done more to help them understand why they need to be vaccinated? Yes. Could we have done more to make vaccines more accessible to them with appropriate accommodations? Yes. Is it too late? No!
Let’s ask ourselves, what can we do right now to support people who are not fully vaccinated? And what are we going to do with the next major vaccine rollout so we don’t just keep repeating the same mistakes?
If we don’t count, they don’t count: We need data on people with developmental disabilities to be available nationwide. They tell us where the gaps are and show us if our tailored interventions are working. They also give the message that people with developmental disabilities matter.
Nothing about us without us: We need to be proactive and inclusive in our planning when it comes to vaccination. If there is one thing people with disabilities and their families have in common, it is the repeated messaging that they don’t matter, and the terrible stress and panic when it is finally their turn and they have to scramble to get vaccinated, in sometimes less than ideal circumstances. How do we do this right? We ask them.
All hands on deck: We need to do more to get our developmental disability community vaccinated, and continue our outreach to the people who have been missed. What are their concerns? What do they need to support them better? Just imagine if every trainee in medicine, nursing, and pharmacy involved in vaccinations could have some training and a positive experience supporting at least one person with a developmental disability to get their vaccine; we could be in a much better place when it comes to the future of health care delivery.
We have learned so much this past year about vaccinations. We have learned about what it means to make vaccines accessible to all. We have learned that people who were very afraid of getting a vaccine can actually be vaccinated successfully with the right support, without being traumatized in the process. We have learned that an accessible vaccination protocol not only helps people with developmental disabilities and their families, but it is also an excellent teaching opportunity for so many people who work in health care, on how to best support this population.
There are excellent resources available to promote and encourage vaccination in people with developmental disabilities, and offer strategies to make vaccination more accessible:
- Ready for My Shot – a grassroots initiative that began as an advocacy campaign to get people with developmental disabilities prioritized to be vaccinated and transformed to become a community resource hub with information and innovative vaccine promotion efforts. Watch the fantastic video, Live Your Best Life, put out earlier to encourage people with developmental disabilities to get their COVID shots.
- Getting Ready for My Shot – This Surrey Place resource includes vaccination preparation tips and forms for caregivers and people with developmental disabilities. Other Surrey Place pandemic resources can be found here.
- H-CARDD COVID-19 Vaccine Resource page – We continue to work with self-advocates and with families to answer questions about vaccination, tell stories, and simplify complicated information so that everyone can understand it.
- Books Beyond Words story on getting a vaccine – because sometimes you don’t need any words at all to help someone understand a process.
- Steffi Booster – this online story is part of a series where Steffi explains things about COVID-19 simply, using pictures and a narrator.
- Booster Easy Read Guide – this Easy Read explains why it is important to get a COVID-19 booster and who is eligible for the 4th dose in Ontario.
- Blog Post: Vaccines: Our Work is Not Done (May 22, 2022)
- Blog Post: It's Not All Bad News (August 11, 2022)
Please share these resources widely because when it comes to vaccines and developmental disabilities because our work is not done.
For more information on our CIHR-funded study, Addressing unmet and emerging health needs of Canadian adults with intellectual and developmental disabilities and their families during COVID-19, click here.