Focus on human rights, disability and ethics

A group of internationally-recognised independent experts in the area of human rights, bioethics and disability has published an eight-page Statement of Concern to highlight ethical decision-making in the context of disability and the COVID-19 pandemic.

The document, which has been endorsed by Assembly, is titled COVID-19: Human rights, disability and ethical decision-making and is signed by eight eminent Australians with backgrounds ranging from human rights law to disability discrimination to bioethics.

“People with disability are at much greater risk than the general population from the COVID-19 pandemic,” it says.

The group says people in the following groups are at particular risk:

  • Older people with disability
  • First Peoples with disability
  • People with intellectual disability
  • People with psychosocial disability
  • People with chronic health conditions, co-morbidities, dependence on ventilators and compromised immunity.

“As the pandemic progresses in Australia, and there is greater demand on critical health treatment and intensive medical care, we are concerned about the policies, protocols and guidelines that will determine decision-making in the context of life-saving medical treatment,” they write.

“Our concerns are based on international experience that shows that human rights have not been applied to a number of COVID-19 specific health directives and medical decision-making protocols.

“This has demonstrated an underlying, pervasive and often unquestioned devaluing of people with disability that is termed ‘ableism’.

“We are concerned about similar ableist practices and protocols being replicated in Australia.

“We are further concerned, given the greater risks faced by older people with disability and First Peoples with disability, that when ableism intersects with ageism and/or racism, it can result in aggravated forms of discrimination and specific human rights violations that often mean lower quality services, particularly when resources are scarce.

“In this context, we believe it is critical that nationally consistent human rights principles and standards underpin ethical decision-making frameworks to protect the rights of all people with disability in Australia during the COVID-19 pandemic.”

The group lists a six-point framework of human rights principles for ethical decision-making.

  1. Health care should not be denied or limited to people with disability on the basis of impairment.
  2. People with disability should have access to health care, including emergency and critical health care, on the basis of equality with others and based on objective and non-discriminatory clinical criteria.
  3. Health care should not be denied or limited because a person with disability requires reasonable accommodation or adjustment.
  4. Health care should be provided on the basis of free and informed consent of the person with disability.
  5. Health care should not be denied or limited based on quality of life judgements about the person with disability.
  6. Ethical decision-making frameworks should be designed with close consultation and active involvement of people with disability and their representative organisations.
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