Independent experts in human rights, bioethics, and disability are concerned about the decision-making process being used during the outbreak of COVID-19 and the impact on people with a disability.
These concerns were released in a statement last week with experts calling for the rights of people with disability to be considered in the response to COVID-19.
The statement, which was commissioned by peak disability groups including People with Disability Australia (PWDA) and the National Ethnic Disability Alliance (NEDA), comes as the National Cabinet has approved a COVID-19 response plan for people with disability.
Although the experts welcomed the response plan, they say it needs to be based on human rights and principles to make sure ethical decision-making is used.
Professor of Bioethics and Director of the Disability Innovation Institute at the University of New South Wales (UNSW), Jackie Leach Scully says that the national response plan is just the starting point of ensuring the needs of people with disability are met.
“The Government’s Management and Operational Plan for People with Disability is a good starting point and is a more comprehensive response than we’ve seen in many other countries, but it is only a start.”
A potential lack of focus on the right to health, equal access to critical healthcare, and the right to life for people with disability during COVID-19 is a concern for the experts as they do not want someone to miss out on care due to discrimination or ableism.
Chief Executive Officer of PWDA, Jeff Smith says that equal access to health services has always been an issue for people with disability with many facing discrimination and that the pandemic may make this worse.
Vice-Chair of the United Nations Committee on the Rights of Persons with Disabilities and Senior Research Fellow at the University of New South Wales (UNSW) Rosemary Kayess says that it is this discrimination along with the international response to COVID-19 that has raised concerns about the access to critical care.
“People with disability are at risk of having their rights violated through arbitrary triage systems. Which puts people with disability in a situation where just because of their disability, and not necessarily because of any clinical reference back to COVID-19, they are at risk of being denied critical healthcare."
She adds that the decision process for medical services around accessing healthcare and critical care needs to be formed around supporting people with disability, not ableism and prejudice.
The experts put together a number of ethical decision-making principles to make sure the focus is on human rights.
The suggested principles include:
Health care is provided based on free and informed consent and is not denied or limited to people with a disability based on impairment, quality of life judgements, or because reasonable accommodations and adjustments need to be made.
People with disability having equal access to health care, including emergency and critical health care, based on non-discriminatory clinical criteria.
Ethical decision-making frameworks being designed with the involvement of people with disability and their representative organisations.
The Australian, and worldwide, response to COVID-19 may have forgotten people with disability, says Professor Scully.
“I think what has happened in many places (not just Australia) is that people with disability have been forgotten, or it has been assumed that the considerations for older people will cover disability as well.
“One area where this has already proved very problematic is in guidelines for assessing patients for access to critical care. It’s important to remember that although there is overlap, in the sense that many older people experience disability, the problems faced by younger people with disability are distinctive and need to be treated separately in emergency planning.”
Concerns around emergency planning not just during the COVID-19 outbreak but for the future are also shared by the Disability Royal Commission.
Disability Royal Commission Chair Ronald Sackville AO QC says, “We recently published an issues paper to look at what can be done to improve the safety and wellbeing of people with disability during emergencies like the COVID-19 pandemic and the recent summer bushfire crisis.
“We have already heard that some people are facing barriers to accessing quality health care, as well as medications, assistive devices, rehabilitation and therapeutic services and essential health supplies, such as personal protective equipment and sterilising equipment.“
You can visit our dedicated COVID-19 information page for the latest updates on how COVID-19 is impacting the disability sector.
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