These concerns are raised by PWD Australia in spite of the reality that PWDA does not itself take a formal position on euthanasia:
18 April 2013
Members of the House of Assembly for South Australia
Dear Members of the House of Assembly
Re: Ending Life with Dignity Bill 2013
I am writing regarding this bill which is currently before the Assembly.
People with Disability Australia Incorporated (PWDA) is a national peak disability rights and advocacy organisation. Our primary membership is made up of people with disability and organisations primarily constituted by people with disability. PWDA also has a large associate membership of other individuals and organisations committed to the disability rights movement. We are a non-profit, non-government organisation.
Founded in 1981, the International Year of Disabled Persons, People with Disability Australia seeks to provide people with disability with a voice of our own.
We are the only cross-disability national peak organisation representing the interests of people with all kinds of disability.
We work with some of the most vulnerable people in the community, including people in the justice system, people in institutions; people who are homeless or subject to violence and bullying as well as people who have intellectual and psychosocial disability.
We are a stable long term organisation which is well respected across the disability rights sector and we work collaboratively with other organisations and with all levels of government. We pride ourselves on being transparent and working collegiately in a sector that is sometimes fragmented and complex. We work professionally and to a high standard in our representation, our projects and in our advocacy.
We are governed by people with disability and our Board is directly elected by people with disability. I was elected by the members in November 2012 along with a national Board that spans from New South Wales, Queensland and Victoria to Port Pirie and Western Australia.
We are strongly connected to the disability community and our social media presence is over 2,500 strong with many hundreds of people engaged with interactive campaigns , such as the national campaign, ‘Shut In’ that raises awareness and provides a voice for people with disability in institutions.
PWDA does not have a single view on euthanasia and there are some members who are concerned about legalised suicide for people with disabilities given the potential for abuse and perverse outcomes and others who do not have a view or support a right to choice and believe in the right to make end of life decisions for people with an illness like inoperable Cancer.
PWDA is a progressive Human Rights organisation. We are not a pro-life lobby group. Our views on the Bill emerge from a secular rights basis and we recognise that there are divergent opinions on euthanasia in the disability community.
However there is a widely held view across our Board that legislation must have safeguards and closely attend to the UN Convention on the Rights of People with Disabilities which has been ratified by Australia.
In view of the above, the current Bill concerns us on a number of levels:
The Bill does not mention the UN Convention on the Rights of People with Disabilities which has been ratified by Australia. Article 10 of the Bill, which we strongly lobbied for, provides that States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others. It is of concern that the Objects of the Bill under Section 5 do not mention the Convention at all and stress equality of outcome for people with disability.
Terminal illness is not a clearly understood term and there is blurring between this and disability which is not addressed within the Bill:
The Bill says terminal illness means an illness or condition that is likely to result in death. Subsection 2 defines the state of being terminally ill as having a terminal illness which is causing unbearable suffering which cannot be alleviated to a degree the person finds acceptable i.e, including suffering which is unacceptable to a person at a point in time.
This appears to effectively open the door to the Bill encompassing some disabilities which shorten lifespans and could be unacceptable to a person at a point in time but then become bearable at a later point in time given the right supports. Many disabilities such as a high level spinal injury, multiple sclerosis or motor neurone disease might fall into this category. In the absence of supports for people with these disabilities this Bill is open to perverse outcomes and exploitation of vulnerable people.
PWDA is concerned that the bill creates a double standard in the treatment and interventions around ending one’s life based on disability. Euthanasia is assisted suicide and the Bill fails to provide for suicide prevention and other counselling which may identify other issues in people’s lives which weigh in their decisions.
The consent form at Schedule 1 does not invite the person to indicate whether a lack of disability or other supports might be impacting on their decision, PWDA believes that the current broke and broken disability support system around Australia, including in South Australia, may create a raft of pressures in people’s lives which may impact on decisions. The consent form also asks people to indicate whether they believe they currently have a terminal illness and invites a broad definition which may include disabilities which may shorten the life span. Arguably, it would enable a similar outcome to the deaths of the two twins in Belgium who took their own lives on the basis that becoming deaf/blind could be unendurable.
PWDA works with many people with dual disability, including long term vulnerable people whose supports have broken down. The Bill deals with depression but does not mention other forms of psychosocial disability which may impact on a person’s decision making. The way in which cognitive, intellectual or dual disability would interact with consent is unclear.
We have some concerns about arrangements for consent under the Bill, especially for people with communication barriers. It is possible to imagine a situation where a person with a disability has no say at all.
The Bill provides under Section 18 that, if the person making the request is unable to write, the person may make the request orally, in which case the request must be ‘videotaped’ and they rely on the witnesses one which can be a Doctor or a person who is not a relative or a beneficiary. Some people with disabilities use alternative forms of communication and find it difficult to communicate with people they wouldn’t normally communicate with. This raises issues about communication which is done in a way which only people close to a person would understand and which a video-tape wouldn’t recognise or record accurately. It is also unclear how this would interact with processes like facilitated communication which is just one of a range of ways people communicate.
Facilitated communication is strongly supported by PWDA, but contested by some practitioners and organisations so the outcome could depend on where individual witnesses might sit on this issue. This opens another gap in the protections provided by the Bill which could result in perverse outcomes.
PWDA believes that there is a need for more considered national work on a range of issues at the health/disability interface and to harmonise these to avoid the risk of different human rights outcomes based on where people live.
While we welcome progress on the NDIS in South Australia, especially the news from COAG today, we note that people with disabilities in South Australia fare worse on some indicators (see ABS SDAC 2009 for some examples around social participation) and also that some people lack access to advocacy which is a vital safeguard.
President of PWD Australia,
This work should include the adoption of a National Position on Eugenics and Biotechnology by all Australian First Ministers covering issues which act on Article 10 of the UN Convention including: Assisted Suicide on the grounds of disability, Genetic Screening, Involuntary sterilisation and certain surgical procedures.
In the absence of this work and major amendments, PWDA believes that the Bill as it stands raises serious issues and risks for people with disability.
Thank you for considering this letter and you can also contact me directly on 0413 135 731.
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