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An ethical obligation to prioritize people with intellectual disabilities for the COVID vaccine

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By Andria Bianchi, Ana Luisa Santo and Yona Lunsky

On December 9th, 2020, a palpable sense of relief was experienced by many healthcare providers and members of the public upon learning that Health Canada approved its first COVID-19 vaccine, co-developed by Pfizer and BIoNTech. The Moderna vaccine was approved shortly thereafter, and other vaccines are currently in the works.

Although Canada secured a substantial number of vaccines, it will take time to inoculate everyone who wants it. Consequently, and as many of us know, it is necessary to prioritize people during the vaccine rollout.

Canada’s National Advisory Committee on Immunization (NACI) makes recommendations about the use of vaccines for humans. In relation to COVID-19, the Committee has argued that certain groups ought to be prioritized based on their level of vulnerability, i.e., the likelihood of becoming infected and harmed by the disease.

According to NACI, the first group to be prioritized (“Stage 1”) for the COVID-19 vaccine includes: (1) people in congregate living settings that care for seniors (e.g., residents and staff working in long-term care); (2) individuals over 70; (3) health care workers; and (4) Indigenous communities. The second group (“Stage 2”) includes: adults from Indigenous communities who are not yet inoculated; residents and staff of other congregate settings (e.g., homeless shelters; group homes); first responders; adults between 60-69; adults from racialized and marginalized communities; frontline essential workers who cannot work virtually; and primary caregivers for people at high-risk of COVID due to advanced age.

In order to help guide ethical decision-making regarding the immunization rollout, NACI suggests that “efforts should be made to increase access to immunization services to reduce health inequities without further stigmatization or discrimination, and to engage systemically marginalized populations…”.

The purpose of NACI’s recommendations make sense insofar as they are meant to ensure that the most vulnerable populations get inoculated. When thinking about equity and ensuring that marginalized populations are serviced, however, it is concerning that people with intellectual disabilities have not been specifically mentioned as deserving of prioritization (ideally as part of Stage 1, though it is now too late).

As cited in a recent report, adults with intellectual disabilities are more likely to contract and die from COVID-19. Although there has been minimal research published about COVID-19 and intellectual disabilities in Canada, Public Health England completed a review citing the number of COVID deaths among people with intellectual disabilities (referred to as “learning disabilities” in the UK). Based on information attained between the February 2020 and June 5, adults with intellectual disabilities were deemed 2.3 times more likely than the general population to die from or with COVID. In response to the likelihood of under-notification, however, it was determined that people with intellectual disabilities may actually be 3.6 times more likely to incur and die from the disease, perhaps especially those living in congregate settings. Importantly, the average age at death was much younger than what is seen in the general population. A more recent study including data up to November 20, 2020 concluded that “[p]eople with a [intellectual] disability made up 6 in 100 (5.8%) of all deaths involving the coronavirus… (2,955 of 50,888 deaths). For comparison, people with a [intellectual] disability made up 1.2 per cent of the study population, therefore suggesting that people with a [intellectual] disability have been disproportionately impacted by the COVID-19 pandemic”.

The above studies focus on people with various intellectual disabilities, however, it ought to be noted that people with Down syndrome specifically are ten times more likely to die as a consequence of COVID and more likely to be hospitalized at younger ages. As per one retrospective analysis, the median age of hospitalized COVID-19 patients with Down syndrome is 54, whereas the rest of the population is 66. This difference in age is concerning. According to NACI, people between the ages of 60-69 are one of the most vulnerable groups who ought to be a part of Stage 2 for the COVID-19 vaccine. It seems to be the case, however, that people who are younger than 60 and who have Down syndrome, and other types of intellectual disabilities, may experience similar – if not worse – consequences from COVID.

Not only are death rates among those with intellectual disabilities higher than the general population, but the negative impact of COVID is seemingly amplified. Many people with intellectual disabilities may be unable to fully comprehend the rationale behind our new and ever-changing social norms and policies (e.g., isolating, maintaining distance, wearing masks, etc.). And because some people with intellectual disabilities may be unable to effectively and consistently comply with current health measures, it seems plausible that even more restrictive measures may be implemented. These more restrictive measures have negative consequences of their own in that people with intellectual disabilities may be even more isolated than others. Furthermore, people with intellectual disabilities require support from others, where the amount and type of support will vary depending on the severity of the disability; this makes it such that it will either be impossible for this population to physically distance or possible but with significant impact on quality of life.

In addition to the above restrictive measures, the inability to participate in structured activities (e.g., to participate in work, skill based, and recreational activities) has led to an increase of mental health challenges and/or corresponding behaviours amongst people with intellectual disabilities; this is highlighted in the results of a needs assessment survey that was completed by the Research and Education working group of the Sector Pandemic Planning Initiative (SPPI) in Toronto, Ontario. The purpose of the survey was to explore the effects of COVID-19 on people with developmental disabilities and their families. Amongst the 1083 responses received, “[a]pproximately half of respondents reported increased anxiety, depression, and behavioural issues”. Over half of respondents also flagged that they could not access supports.

For many adults with intellectual disabilities, attending day programs, doing activities with peers, and participating in work may significantly improve their mental health, decrease behavioural challenges, and improve quality of life. While several organizations now offer virtual programming, significant limitations are encountered by people with intellectual disabilities due to factors related to their disabilities, such as being unable to afford necessary technology, effectively utilize the technology because of cognitive, physical, and/or language barriers, and/or to focus on the relevant activity when it occurs virtually.

Finally, and as a direct consequence of the above, people caring for those with intellectual disabilities (both paid and unpaid) are bearing substantial stress and pressure. For example, although working from home can bring challenges for many, additional challenges are experienced by families caring for individuals with intellectual disabilities and trying to work (in addition to having other responsibilities and commitments). While emergency childcare has been available at some points for parents working from home who have young children, family caregivers who are working from home and supporting adult loved ones with intellectual disabilities have not been able to access this same level of respite.

Ultimately, the physical and mental health of people with intellectual disabilities and their caregivers continues to be negatively and disproportionately influenced by the COVID-19 pandemic. While these negative consequences are concerning in and of themselves, it seems that many of the challenges and related outcomes could be mitigated by prioritizing this particular population for the vaccine. So, why aren’t we doing it? Failing to explicitly state that people with intellectual disabilities need to be prioritized is causing a measurable and detrimental effect.

As mentioned in a previous column, equity “suggests that a person’s individual vulnerabilities and life circumstances are relevant to determining the most ethically defensible act”, and NACI recommends making an effort to reduce inequities as part of the vaccine rollout. Although people with intellectual disabilities may be included in the vaccine rollout as a part of other clinical groups, the lack of clarity regarding whether this is, in fact, the case, may cause additional anxiety amongst a group that is already anxious and distressed. Ultimately, based on the substantial vulnerabilities that are present for persons with intellectual disabilities, in addition to life circumstances during the pandemic, it seems evident that they ought to be specifically prioritized to receive the vaccine. We have seen prioritization in other jurisdictions, and it is time to do so here.

Andria Bianchi, PhD, is a Toronto-based bioethicist and an Assistant Professor (status-only) at the Dalla Lana School of Public Health, University of Toronto, Ana Luisa Santo, MA, BCBA, is a Senior Behaviour Therapist at Surrey Place and Yona Lunsky PhD CPsych, directs the Health Care Access and Developmental Disabilities (H-CARDD) Program at the Azrieli Adult Neurodevelopmental Centre, CAMH.




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