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4 June 2020
Value and worth: should people with disabilities have access to ICU facilities and ventilators during COVID-19?

Picture credit: Shirley Emms

(Published - 4 June 2020)

It would seem that while South Africa has strong legislative policies aimed at protecting the rights of all people, including people with disabilities, an examination of the current COVID-19 triage policy framework that has been adopted by the Department of Health suggests otherwise. During disasters when resources are limited, healthcare workers are required to make decisions as to who should and who should not get life-saving healthcare. Disasters such as Hurricane Katrina and the Haiti earthquakes have shown us how important having triage policies are in order to standardise resources and care and guide healthcare workers.

In light of the COVID-19 pandemic, it brings me to the question that many health care workers in South Africa will be expected to answer: should people with disabilities have access to ICU facilities and ventilators during COVID-19?

In South Africa, people with disabilities have been discriminated against in all areas, including education, employment, as well as access to healthcare. In addition, many people with disabilities have been further discriminated against according to their race, gender, as well as disability type. When it comes to people with disabilities during the COVID-19 pandemic in South Africa, issues surrounding access to healthcare remain a significant challenge. Think of how the majority of public transport systems are inaccessible to wheelchair users, or how difficult it is for people with sensory disabilities to independently catch a mini-bus taxi, bus or train. This situation may prevent them from accessing testing sites as well as medical facilities. To add to the dilemma, not all vital information relating to COVID-19, such as how the virus is transmitted, is published or shared in a way that people with learning or intellectual disabilities can understand. Furthermore, not all visual broadcasts include sign language interpretation for people who are deaf.

For those people with disabilities who can get to healthcare facilities, many may experience additional challenges. With policy dictating that patients cannot be accompanied by friends or family, taking a full patient history or requesting a patient to sign consent may be significantly difficult, or at times impossible, for a person on the autistic spectrum, those with severe intellectual or psycho-social disabilities, or for people who are deaf who require the services of a sign language interpreter. For people, like myself, who are hearing-impaired and rely on lip-reading to access information, understanding healthcare workers wearing facemasks is impossible. However, we may access ICU beds as well as ventilators, as long as we don’t have comorbidities or are over the age of 65.

The situation for people with physical disabilities, even those with ‘mild’ impairments and those requiring full-time care - such as people with intellectual disabilities - is very different, even if they seem stable and not at risk of dying within six months. According to the current triage policies, a person with a Frailty Assessment Score of above four (anyone who is ‘mildly frail’ to ‘severely frail’) will be excluded from ICU access as well as ventilators if they become ill. They will only be provided with oxygen therapy and urgent palliative care. What does this say about the value placed on the lives of people with disabilities? How does one measure ‘worth’? My husband Vic McKinney is paralysed from the shoulders down, unable to use his legs and arms since an accident in 1987. However, he completed his studies independently, holds a PhD, lectures at a university, started early childhood development centres in townships for children with disabilities, is a member of the Presidential Working Group on Disability, paints pictures using his mouth and is an involved and present father to our two young sons. Why should his life and others in the same situation be less worthy of being saved? The Constitution of the Republic of South Africa states that all people have equal rights - the right to access healthcare as well as the right to life. How then can access to life-saving care and resources exclude people with disabilities?

Dr Emma McKinney is a lecturer and researcher at the Interdisciplinary Centre for Sports Science and Development (ICSSD) at the University of the Western Cape (UWC).