PWD E-Bulletin

Welcome to PWD’s e-bulletin. The e-bulletin goes out to members and interested others regularly by email. For members who do not have access to email, a printed version of the e-bulletin will be sent by post. To be added to or removed from our mailing list, or to change your email address, please contact Allyson Campbell at PWD on email pwd@pwd.org.au or on one of the numbers listed at the end of this bulletin.

Contents

New South Wales news

• NSW Mental Health Bill 2006
• PWD opposes proposed amendments to the Guardianship Act 1987 (NSW)

Other state and territory news

National news

• Sterilisation of children with an intellectual disability
• Human Rights Awards 2006
• Commissioner Innes welcomes progress in banking access
• New name for ACROD
• MDAA launches the NESB and Disability Clearing House
• Review of therapy and equipment needs of people with cerebral palsy in Australia

International news

• Convention adopted by General Assembly, 13 December 2006

The inside story

• Best wishes for the holiday season
• Honours for PWD Life Members
• PWD short-listed for human rights award
• PWD Annual General Meeting, 18 November 2006
• PWD International Day of People with Disability

New publications and resources

Conferences and events

About PWD

• PWD's training services

Privacy statement

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NSW news

NSW Mental Health Bill 2006

Over the last three years, PWD has been participating in the review of the NSW Mental Health Act 1990. Recently, PWD submitted its response to the exposure draft Mental Health Bill 2006 (draft Bill) released by the NSW Government for consultation.

PWD believes that the review of the Mental Health Act 1990 is a significant opportunity to develop progressive legislation that protects the human rights of people with mental illness and ensures adequate and appropriate care and treatment. We are extremely concerned that the Bill does not capitalise on this opportunity.

Instead, it appears to view people with mental illness in the context of ‘control’ rather than ‘protection’, and because of this does not comply with international or national human rights standards, such as the UN Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care.

Our submission raised some key concerns, including:

• The use of the word ‘control’ in the objects of the draft Bill does not convey that the rights of a person with mental illness will be protected and upheld, but rather that a person with mental illness needs to have limits placed on their rights in order to protect the rights of others. This is extremely problematic when viewed in the context of documented human rights violations against people with mental illness.
• We do not support provisions in the Bill that allow for electro convulsive therapy (ECT) to be performed on involuntary patients, or on voluntary patients without their informed consent. In our view, ECT should be a prohibited treatment. However, if this position is not accepted, we argue that ECT should only be performed as a last resort on voluntary patients who can give informed consent and only after review by the Mental Health Review Tribunal. We also argue that the draft Bill should prohibit the use of ECT on people under the age of 18 years.
• We do not support provisions in the Bill that allow for major medical or surgical procedures to be carried out on an involuntary patient irrespective of consent. We argue that such procedures should only be performed with the informed consent of the person, unless the operation is required to save the life of the person or to prevent serious damage to the person’s health. If the person is unable to give informed consent than the procedure must be authorised only after independent review.
• PWD cannot support provisions in the draft Bill that allow ‘special medical treatment’, including sterilisation procedures or procedures resulting in sterilisation to occur without the informed consent of a person over the age of 18 years, or where the procedure is not required to save the life of the person or to prevent serious damage to the person’s health. In the case of a person under 18 years of age, we argue that such treatment should be prohibited, except where it is necessary to save the life of the person or to prevent serious damage to the person’s physical health, and where it is authorised by a court or tribunal under legislation. The only exception to court or tribunal authorisation would be where an emergency procedure is required to save life or prevent serious damage to a person’s physical health.
• We argue that the draft Bill does not recognise the specific need for protection or the specific rights of children and young people. We argue that specific protections should be incorporated in relevant sections throughout the Bill, including prohibition on children and young people being placed in adult mental health facilities, stipulations that children and young people should receive community-based care and treatment options where possible, right of children and young people to participate in decisions about their care and treatment, and mental health facilities must comply with relevant standards and checks for working with children and young people.

Overall, PWD recommended that the draft Bill should be redrafted in line with human rights instruments, guidelines and standards.

Our full submission is available on our website.

PWD opposes proposed amendments to the Guardianship Act 1987 (NSW)

The NSW Guardianship Tribunal recently sought submissions from the community regarding its proposal for four substantial amendments to the Guardianship Act 1987 (the Act). The amendments are discussed in detail in a discussion paper available from the Tribunal: www.gt.nsw.gov.au

• Should the Act allow, at the Tribunal President’s discretion, fewer than three (3) members to hear reviews of guardianship and financial management orders and applications for major medical or dental treatment?
• Should the possible maximum term of appointment for members of the Tribunal be extended from three (3) to five (5) years?
• Should the Tribunal have increased flexibility to make non-reviewable guardianship orders?
• Should the Registrar of the Tribunal be able to exercise the procedural functions discussed in the Discussion Paper? Should the Registrar also have the authority to determine that no further action be taken in relation to certain applications to the Tribunal?

PWD provided a detailed submission to the Tribunal that can be viewed at our web-site (editor please insert link). In summary, PWD said that there is no more important or sensitive jurisdiction than that relating to guardianship. The jurisdiction requires a delicate balancing between the rights of people alleged to have decision-making disability, and their need for protection through supported or substituted decision-making when found to have a decision-making disability. PWD said that any initiatives that might affect the operation of that jurisdiction demand the closest scrutiny and adherence to the highest of standards if they are to serve the demands of such an important and complex jurisdiction.

PWD conducted a thorough analysis of the Act in its current (pre-amendment) form against human rights and administrative law norms and standards and found a deeply concerning lack of certain fundamental rights and safeguards for people with disability. Notwithstanding its other positive features (such as the multi-member, multi-disciplinary Tribunal), PWD found that the Act currently lacks:

• a clear statement of the legal presumption in favour of capacity for adults
• a clear statement that all people subject to a guardianship or financial management order retain the right to freely pursue their economic, social and cultural development (implicit in which is the right of such people to seek review, complain, or appeal against any aspect of the operation of the guardianship regime)
• a clear obligation on the Guardianship Tribunal to engage in periodic review at specified reasonable intervals of all guardianship-type orders, including financial management orders
• a clear statement that a person whose capacity is at issue shall be entitled to be represented by an independent advocate (without any conflict of interests), and that if the person whose capacity is at issue does not himself or herself secure such representation, it shall be made available without payment by that person; and
• A clear statement recognising that for people whose capacity has been found in issue, rights of complaint, review or appeal, and to be heard, may be meaningless unless independent advocacy support is provided to the person to support them to consider and access those rights.

PWD regards these legislative and programmatic deficiencies as serious, and in need of urgent attention. Indeed, PWD stated that we believe that a much stronger argument can be made in favour of amending the Act to address these deficiencies rather than some of the currently proposed amendments.

In light of the lack of these key safeguards, and notwithstanding that NSW can be proud of much of the operation of its guardianship regime to date, PWD was reluctant to indicate acceptance of any of the proposed amendments that in our view may further undermine fundamental rights and freedoms and limit essential safeguards for people with disability. Accordingly, PWD was able to support only the proposed amendments about the maximum term of appointment for Tribunal members, and giving the Registrar power to exercise some of the procedural functions discussed in the Discussion Paper.

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Other states and territory news

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National news

Sterilisation of children with an intellectual disability

In August 2003, the Standing Committee of Attorneys-General (SCAG) agreed to develop a nationally consistent approach to the authorisation procedures required for the lawful sterilisation of children with a decision-making disability.

In 2004, PWD responded to an Issues Paper released by SCAG to gather comment on the sterilisation of children with decision-making disability. After reviewing responses to this Issues Paper a working group reporting to SCAG has prepared a draft model Bill to assist the Attorneys-General resolve a number of outstanding policy issues. PWD has recently provided its response to the draft model Bill.

Our submission emphasises PWD’s strong support for the development of uniform national legislation to protect children and young people from non-therapeutic sterilisation. Uniform national legislation must prohibit this human rights abuse and outline the circumstances in which only therapeutic sterilisation can occur. PWD maintains its position that non-therapeutic sterilisation of children and young people is a procedure to which neither a child or young person, or a parent, or a court or tribunal may consent.

However, the circumstances and principles proposed in the draft model Bill are essentially permissive of non-therapeutic sterilisation; they are not protective of the rights of children and young people. PWD is strongly opposed to the draft model Bill.

While we note with some relief the statement by SCAG that the draft model Bill does ‘not represent a settled policy position at this time’, we believe that this draft model Bill represents a significantly regressive and harmful position for the SCAG to be considering.

Our submission raises our key concerns including:

• Explicit in the draft model Bill is the assumption that ‘disability’ is the qualifying factor for allowing non-therapeutic sterilisation to be carried out on children and young people. Non-therapeutic sterilisation should be unlawful for all children and young people, and no groups of children and young people can be exempt from this prohibition. Pinpointing ‘disability’ as a qualifying factor for authorising non-therapeutic sterilisation presents enormous risks to the human rights of children and young people with disability.
• While the draft model Bill allows for a child or young person to consent to non-therapeutic sterilisation, we argue, based on recent case law that there are some types of medical treatment that are irreversible and so serious that a child or young person who has the capacity to consent should not be allowed to consent. The seriousness and irreversible nature of the surgery warrants court or tribunal authorisation only.
• The draft model Bill provides that a tribunal can authorise sterilisation if a number of conditions are satisfied, including if the procedure is in ’the best interests of the child’. We argue that sterilisation is only ever in ‘the best interests of the child’ if it is performed for therapeutic purposes. Our argument is based on the fact that determinations of what is in the ‘best interests of the child’ do not take into account the potential best interests of the child or young person as the child or young person develops and matures into adulthood, nor do they predict the lifelong negative consequences that may affect the child or young person’s physical and psychological well-being and identity, as borne out by the personal stories of those who were sterilised as children.
• Non-therapeutic sterilisation is clearly not in the best interests of the child or young person without disability. The same standard must exist for all children and young people. If sterilisation would not be the recommended option in the same clinical circumstances for a child or young person without disability than it is not in the best interests of the child or young person with disability.
• Children and young people with disability have the same rights as children and young people without disability. Determinations about what is in the best interests of the child need to be grounded in human rights, including those outlined in the Convention on the Rights of the Child, the Convention on the Elimination of All Forms of Discrimination Against Women and the Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities.

• In rejecting the draft model Bill, PWD called on SCAG to concentrate on the development of uniform, national legislation that protects the human rights of children and young people in relation to sterilisation. Integral to the development of this legislation, and to counteract the prevailing misunderstandings, misconceptions, lack of knowledge and negative views, should be the views and personal stories of those people who have been sterilised and the views of children or young people, in particular children and young people with disability.

  Other disability advocacy organisations have also provided submissions to SCAG that voice their opposition to the draft model Bill. Women with Disabilities Australia (WWDA) has also called for support in voicing opposition to the draft model Bill from disability, as have other women’s and human rights organisations, both within Australia and internationally. WWDA’s website also has a number of comprehensive papers and submissions on the issue of sterilisation and the negative effects of this procedure on girls and women with disability. See www.wwda.org.au

  Our full submission is available on our website.

  For more information about PWD's response contact Therese Sands.

  Human Rights Awards 2006

  The HREOC 2006 Human Rights Awards were presented at the Sheraton Hotel on Thursday 7 December. PWD was delighted to be short-listed for the Community Award (Organisation).

  MC Julie McCrossin entertained the gathering in her inimitable style. She drew attention to the way language reflects changing social attitudes by asking the interpreter to demonstrate the Auslan sign for disability from 20 years ago, and compare this with the far more positive current sign.

  The Hon. John von Doussa, President of HREOC, gave the keynote address. He reminded the audience that the Universal Declaration of Human Rights was adopted by the UN General Assembly back in 1948, when Australia’s Doc Evatt was the Assembly Chair. At this time, the White Australia Policy was active, Aboriginal people could not vote, sex and disability discrimination were rampant, and the practice of homosexuality was a criminal act. Von Doussa spoke about our journey since then, about current concerning references to September 11 as heralding an era when ‘human rights have come and gone’, and about our journey into the future as human rights continue to be challenged in this country.

  Disability issues appeared frequently amongst nominees. The Radio Award went to Kirsti Melville of ABC Radio National’s Street Stories program for her program, ‘Being Deaf’, with the program ‘Sex and the Intellectually Disabled’ by Damian Carrick and Anita Barraud (ABC) short-listed. Runners-up for the Law Award were two disability legal organisations in Queensland.

  Winner of the Community Award (Organisation), for which PWD was short-listed, was the Edmund Rice Centre for its work on the Asylum Seeker Returnees Program. Joint winners of the Human Rights Medal for 2006 were Phillip Adams AO and Father Chris Riley AM. More information about all award winners can be found at http://www.hreoc.gov.au/hr_awards/2006.html.

  Commissioner Innes welcomes progress in banking access

  Human Rights Commissioner and Commissioner responsible for Disability Discrimination, Graeme Innes AM, has congratulated the Australian Bankers’ Association (ABA) and its members on progress made in the area of accessible electronic banking.

  The ABA has released Accessibility of Electronic Banking: Progress Report 2006 to coincide with International Day of Disabled Persons (3 December).

  ‘This is the second progress report issued by the ABA since the introduction of voluntary industry standards on electronic banking in 2002. It shows considerable progress has been made in improving access to these services,’ said Commissioner Innes.

  The ABA developed voluntary industry standards in the areas of ATMs, EFTPOS, telephone and internet banking following a Human Rights and Equal Opportunity Commission inquiry in 2000 which found that people with disabilities and older people were in danger of being on the wrong side of the digital divide.

  ‘The industry standards are designed to ensure that people with disabilities are able to benefit from the convenience of electronic banking,’ Mr Innes said.

  ‘For example, more and more ATMs are being installed at a height that can be accessed by people using wheelchairs and with audio capacity for blind customers.’

  The report summarises developments by ABA members and includes suggested actions that banks might take to maintain progress and report against industry standards to the public.

  ‘I am particularly pleased to see that many ABA members are addressing broader access issues through access policies or Action Plans and that many banks are working to ensure that people with disabilities are part of their workforces,’ Commissioner Innes said.

  ‘I look forward to working with the ABA, other financial services providers and the disability sector over the next year to achieve more progress in the area of accessible banking.’ The progress report can be found at http://www.bankers.asn.au/accessibility_progress/.

  New name for ACROD

  At ACROD’s Annual General Meeting on 29 November, members voted to change the organisation’s name to National Disability Services Limited (NDS).

  After considering views from members for and against the change, more than 75% voted in favour.

  The legal procedures required to make the change will commence this week, with the implementation of the new brand in the New Year.

  The re-branding process will deliver not just a new name, but a clearer sense of ACROD’s purpose and core values.

  MDAA launches the NESB and Disability Clearing House

  On International Day of People with Disability this year, Multicultural Disability Advocacy Australia (MDAA) launched this initiative.

  The aim of the clearing house is to bring together information in community languages about disability, community services, rights and other related areas. MDAA invites community members to share with them any relevant links and information that would be helpful to others. Languages in which information is available include:

  • Arabic
  • Chinese (Cantonese and Mandarin)
  • Croatian
  • Farsi
  • Filipino (Tagalog)
  • Hindi
  • Korean
  • Macedonian
  • Persian
  • Polish
  • Serbian
  • Spanish
  • Turkish
  • Urdu
  • Vietnamese

  Review of therapy and equipment needs of people with cerebral palsy in Australia

  In the first project of its kind in Australia, the Australian Institute of Health and Welfare (AIHW) and Cerebral Palsy Australia examined therapy and equipment needs among people with cerebral palsy and related conditions. The report, Therapy and equipment needs of people with cerebral palsy and like disabilities in Australia, showed that people with cerebral palsy and similar disabilities, and their carers, found both therapy and equipment to be greatly beneficial in terms of minimising the impact of disability and facilitating greater independence and participation in society.

  The AIHW's Dr Xingyan Wen, who headed the project team, said 'People with cerebral palsy and like disabilities commonly use physiotherapy, occupational therapy, and speech therapy. 'Many people also use specialised equipment, such as walking frames, wheelchairs, splints, adjustable beds, communication devices and self-care aids,' he said. Access the report here.

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International news

Convention adopted by General Assembly, 13 December 2006

‘For 650 million persons around the world living with disabilities, today promises to be the dawn of a new era -- an era in which disabled people will no longer have to endure the discriminatory practices and attitudes that have been permitted to prevail for all too long.’

The statement by the UN Secretary-General, delivered to the UN General Assembly by Mr Mark Malloch Brown, Deputy Secretary-General, reflects the spirit of celebration surrounding the adoption of the International Convention on the rights and dignity of persons with disability in New York this month.

The Secretary-General pays tribute to the hard work of the international community of disabled people that drove the process. ‘It was the community of the disabled themselves that worked tirelessly and insistently to promote this Convention, and the United Nations responded. In three short years, the Convention became a landmark several times over: it is the first human rights treaty to be adopted in the twenty-first century; the most rapidly negotiated human rights treaty in the history of international law; and the first to emerge from lobbying conducted extensively through the internet.’

But the adoption of the Convention is just the beginning. ‘Much work remains to be done produce the results that are aspired from the Convention. I urge all Governments to start by ratifying, and then implementing it, without delay.’

Read the full text of the Secretary-General’s statement here.

The inside story

Best wishes for the holiday season

2006 has been a year full of successes and challenges.

A major highlight has been the ratification of the UN convention on the rights of people with disability in New York on 13 December 2006.

As we come to the end of yet another successful year, PWD would like to take this opportunity to thank our members and other stakeholders for their support this year.

We extend our best wishes to all of you for a safe and relaxing holiday season. We look forward to working with you all in 2007.

Honours for PWD Life Members

A civic reception was hosted by the Mayor and Councillors of Marrickville on 11 December to honour Lester Bostock, retiring chair of the Marrickville Aboriginal Consultative Committee (MACC), and winner of the 2006 NSW Law & Justice Award (see November issue of E-Bulletin).

Our congratulations go to Lester as his commitment and dedication are recognised by the whole community.

Joe Mannix was presented with a Premier’s Community Award at the Glebe Balmain Community Reception for the NSW Premier, the Hon. Morris Iemma, on 20 November. Joe was honoured for service to seniors in Port Jackson, in particular for his work at the Hannaford Seniors Centre and his tireless efforts with public housing tenants. Joe continues to be an inspiration to all of us at PWD, maintaining his close ties with the organisation amid his many other voluntary involvements, including as Board Member of the NSW Disability Discrimination Legal Centre.

PWD short-listed for human rights award

PWD Annual General Meeting, 18 November 2006

PWD International Day of People with Disability

PWD members and staff celebrated 25 years of advocacy with a function sponsored by Gilbert + Tobin in Sydney. The theme for the day was ‘Looking back… and looking ahead’. Several members shared their poignant stories, followed by thought-provoking discussion. After lunch, Heidi Forrest and CEO Alastair McEwin presented a photo-story of their experiences during negotiations around the Convention in New York.

Publications and resources

++Publications and resources

Conferences and events

++2-5 January 2007

++7-9 February 2007

++12-13 March 2007

++7-10 March 2007

Online registrations are now open for the 9th National Rural Health Conference to be held in Albury in March 2007 at www.ruralhealth.org.au and the full program has also been published.

The website contains all the information you will need about the cost of registration, pre-conference events, the venue, the exhibition, sponsorship opportunities, travel and accommodation.

Please contact us if you unable to access the internet or if you have any troubledownloading documents or registering online.

++2-3 April 2007

The ACROD 2007 Ageing and Disability Conference at the Hilton Hotel, Adelaide aims to integrate policy, research and practice to improve society’s response to the needs and lifestyle preferences of older people with disability.

ACROD Limited is calling for the submission of abstracts from people wishing to present papers at the Conference. Abstracts are due 9 October 2006. Enquiries: Philippa Angley, ACROD Victoria, Ph 03 9362 0800 or 0411 773 707, philippa.angley@acrod.org.au ; www.acrod.org.au/conferences/a&d2007/home.htm

++5-8 May, 2007

• Theme: Print Disability: Developing Individual Lifestyles in a Technological Age
• Due date for submission of Abstracts: Friday 2nd February 2007

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++Privacy statement

We are committed to protecting your privacy. In doing so, we commit ourselves to conforming to the Privacy Amendment (Private Sector) Bill 2000, which came into effect in December 2001 and the National Privacy Principles issued by the Australian Privacy Commissioner.

This newsletter is distributed by email. You have provided us with an email address. This email address will be used only for the purpose for which you have provided it and you will not be added to any other mailing lists unless you specifically request that this be done.

Your email address will not be disclosed without your consent. You can have your email address removed from the mailing list for this newsletter by sending an email to Allyson Campbell, PWD.

This newsletter contains links to websites. We cannot be held responsible for the privacy practices (or lack thereof) or the content of such websites.

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People with Disability Australia Incorporated
PO Box 666 Strawberry Hills NSW 2012
Phone 02 9370 3100, toll-free 1800 422 015
TTY 02 9318 2138, toll-free 1800 422 016

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