Since last March, disabled people and family organizations have been raising the concern that disabled children, youth and adults have been left out of much of the pandemic planning. Disabilities are rarely if ever named explicitly and we continue to encounter areas where things have been missed that would not have been, had disabled people with lived experience of the issues being discussed been a part of the conversations.
(I do want to note that the Ministry of Education has included BCEdAccess and other family organizations in regular conversations since very early on in the pandemic and this has contributed in some cases to positive planning outcomes for disabled children and youth).
We’re grateful to Dignity Denied for their tremendous work on this statement, and thankful that disabled children and youth and their parents and guardians are able to be included by disabled adults to contribute to this advocacy work.
The statement was originally published here:
We are sharing it again on our blog in case you missed it:
Statement on COVID-19 Vaccine Access for Disabled People by Dignity Denied and BCEdAccess
We understand that decisions about vaccine priority are being made, in part, based on input from advisory groups and disability organizations. However, we are aware that little data has been collected around how COVID-19 affects disabled people as a demographic. In addition, we are concerned that the quality of data that is available and being used to support these recommendations is of poor quality, and may in fact be of little value.
As an example, spinal cord injury is not on the Clinically Extremely Vulnerable list, and as such is not a condition that qualifies someone in BC to receive the vaccine, despite being a population 37 times more likely to die of pneumonia than the general population, due to weakness and/or paralysis of the chest and abdominal muscles which affects clearing lungs by coughing. https://sci.washington.edu/info/forums/reports/common_respiratory.asp
We understand that some SCI organizations providing input have recommended against prioritizing the community they represent, based on a white paper published by the North American SCI Consortium. (https://nasciconsortium.org/wp-content/uploads/2020/12/White-Paper-Known-Evidence-Related-to-COVID-FINAL-11-24-20.pdf). This paper was published Nov. 24, 2020, and contains several case studies of SCI and COVID-19 from Europe, dated early 2020, involving between 1 and 15 individuals; one ongoing study of 37 people with SCI in Nepal, and one large-scale record review of veterans with SCI in the US, dated July 2020.
The US VHA record review – the only large, North American report in the white paper – shows a 19% mortality rate from COVID-19 in veterans with a spinal cord injury, which is almost 10 times the general North American mortality rate of less than 2%. This seemed concerning to us, but we were told it wasn’t relevant as veterans are probably older than the general population and therefore statistically more susceptible to the virus, which would explain the (very) high mortality.
We found that the US VHA record review referenced in the white paper (https://www.nature.com/articles/s41393-020-0529-0) clearly states:
“The case fatality rate of 19% in Veterans with SCI/D can be compared with the rate in the overall US Veteran population enrolled for VHA health care, which has a similar proportion of individuals age 65 years or greater. The SCI/D Veteran case fatality rate with COVID-19 is 2.4 times the rate observed in the non-SCI/D Veteran population, with an absolute rate that is 11% greater.”
In addition, a very recent study funded by Praxis Spinal Cord Institute here in BC (https://pubmed.ncbi.nlm.nih.gov/33502924/) reviewed much of the same data as the above-mentioned white paper, and concludes (with caveats due to limited data):
“the mortality rate of COVID-19 for SCI patients was 10% in the identified case series and reports and 19% in a large, cross-sectional registry study—both substantially higher than mortality rates reported for the general population, but comparable to at-risk populations.”
The North America Spinal Cord Injury Consortium white paper also documents other concerns expressed by people with spinal cord injury at the onset of the COVID-19 pandemic, such as frailty of access to care, difficulty accessing PPE, and the effect on mental health and relationships. The paper quotes statistics confirming that people with spinal cord injury do indeed experience the situations they expressed concern about, and confirms that requiring personal care heightens the risk of exposure to COVID-19.
At best, the literature around spinal cord injury and COVID-19 appears inconclusive. At worst, it demonstrates a mortality rate in spinal cord injured people that is 2 to 10 times higher than the general population. This, combined with other confirmed vulnerabilities such as reliance on personal care making self-isolating impossible and difficulty acquiring PPE would seem to support prioritizing COVID-19 vaccination for the spinal cord injury population.
We believe this example is a cause for concern for disabled people seeking vaccine protection from COVID-19, as it appears some recommendations may be founded on questionable data, and may not take other complicating factors into account.
We also understand decisions about who to prioritize are being made using data about outbreaks and morbidity. There are at least three problems with that method.
1. We are not aware of any data being collected in BC or Canada that disaggregates based on disability. Elsewhere in the world it is inconsistent at best.
2. Disabled people, especially those living with complex disabilities and chronic illnesses, and parents of disabled children know they are particularly vulnerable. As a result many are taking extra care to limit the risks, often exceeding public health orders and isolating in their homes. Because these measures work, there may be less data to indicate their vulnerability. They are essentially being penalized for their compliance and a disproportionate burden is being placed on them by the state policies rather than mitigated. This is an example of structural ableism. Some individuals and families have lost significant income and are struggling to provide financial and round the clock, significant personal care without respite or outside help because it would be too much of a risk for themselves and/or their child or youth’s health.
3. Rare diseases and rare combinations of conditions may not be captured for the obvious reason that they are rare.
We would also like to remind government leaders that:
1. The majority of disabled people have more than one disability and that the combination of disabilities or chronic illnesses are more than the sum of their parts.
2. There appears to be no consideration given to those for whom the medications and treatment used for COVID-19 are not options.
3. Disability and health outcomes are affected by someone’s social and economic conditions. A decision was made to roll back disability benefits leaving many of disabled people in British Columbia in worse poverty and without vaccines.
4. New research and information continues to emerge about COVID-19 and its variants and what factors may contribute to poor outcomes.
5. Some disabled people may be 16 to 18 years of age and not yet supported through Community Living BC and no longer through Nursing Support Services but in all other criteria qualify as clinically extremely vulnerable.
It is presently difficult for people who are awaiting a confirmed diagnosis of their chronic illness(es), or who require special considerations, to access information or guidance. We are also concerned about efforts to provide vaccines for disabled people who for various reasons may have ‘opted out’ of the health care system and are largely unknown to public health authorities despite being clinically extremely vulnerable. And we wonder about vaccine availability for the parents or primary caregivers of clinically extremely vulnerable children or adults who are not eligible to receive the vaccine.
Finally, we are aware that in some jurisdictions, emergency ICU triage protocols de-prioritize disabled people based on an ableist ‘fragility scale’. We state, in the strongest of terms: No one who might be denied a vent under triage protocols should be denied early access to vaccine. This cannot be justified.