‘What does this mean for us?’ People with developmental disabilities left out of vaccination planning
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.
Yona Lunsky, PhD CPsych, directs the Health Care Access and Developmental Disabilities (H-CARDD) Program at the Azrieli Adult Neurodevelopmental Centre, CAMH.