Ms Diane Robinson President Guardianship Tribunal 2A Rowntree, Locked Bag 9, BALMAIN NSW 2041 Wednesday 21 April, 2010

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1 Ms Diane Robinson President Guardianship Tribunal 2A Rowntree, Locked Bag 9, BALMAIN NSW 2041 Wednesday 21 April, 2010 Dear Ms Robinson, Re: Remaking of the Guardianship Regulation 2005 The Disability Council of NSW welcomes the opportunity to submit its views on aspects of the Guardianship Regulations 2005, supporting, as they do, the operation of several provisions of the Guardianship Act About the Disability Council of NSW The Disability Council of NSW was established under the terms of Section 16 of the Community Welfare Act 1987 as the official advisory body to Government in NSW on issues affecting people with disability and their families. We also give advice to the Australian Government on the effect of policy on people with disability living in NSW. Council members are appointed by the NSW Governor on the recommendation of the Minister for Disability Services. Members are selected on the basis of their experience of disability and their understanding of issues, their knowledge of service delivery and their ability to reflect and advise on government policy. The majority of Council members are people with disability. Context We note that the Guardianship Regulation 2005 Discussion Paper states that the remaking of the Regulation does not encompass a review of the scheme for substitute consent, the requirements of which are set out in the Guardianship Act. Nevertheless, we wish to locate our specific comments on issues flagged in the paper within a broader approach to reform. The Disability Council s views on principles guiding substitute decision-making within a rights-based framework were submitted in detailed written and verbal evidence to the Parliamentary Inquiry into substitute decision-making by people lacking capacity. The whole text of our written evidence may be viewed at this Internet location:

2 In our evidence to the Parliamentary Inquiry, the Disability Council stressed the importance to legislative reform, including regulation review, of an approach that responds to and fits with the United Nations Convention on the Rights of Persons With Disabilities. The United Nations describes the Convention as a landmark human rights treaty. We believe this means everyone must see the Convention as something special. It defines a moment of fundamental change for all legislators. The UN goes on to say this about the Convention; While many contended that existing treaties covered persons with disabilities along with everybody else, it was clear that without a legally binding treaty that spelled out their rights, persons with disabilities faced being legally invisible in their societies and even in the international arena. The Convention marks a major shift in the way societies view persons with disabilities, with the person being the key decision-maker in his or her own life. It makes persons with disabilities rights holders and subjects of law, with full participation in formulating and implementing plans and policies affecting them. To this end Article 3.a of the principles of the Convention requires: a. Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons; Article 4.b of the Convention requires States Parties (which includes New South Wales as a law-maker in a Federal Australia) b) To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities; Article 12.4 is explicitly clear on this topic, requiring that: States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person's circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person's rights and interests.

3 Education and training Among many other and broader consequences of the UN Convention we believe that it has a direct effect upon the operation of Guardianship regulations in NSW. Revised regulations within the context of a newly enshrined set of Convention rights will require, therefore, new approaches to the application of those regulations. The training and education needs that arise from these reforms are clear. The implementation of the new regulation should, therefore, encompass education on assisted and substitute decision making within the new framework for all stakeholders, for example nursing homes, group homes, and people with impaired capacity. Listening to the authentic voice of the person with disability We believe this education needs is particularly strong with regard to decisionmaking with and for people with communication difficulties. There can be a lack of understanding by medical professionals of the value in empowering and supporting people to communicate their own needs within a medical context. The often prevalent assumption that people with disability are unable to communicate results in many cases where individuals with rights and capabilities are overlooked because it is deemed easier / quicker / less problematic to communicate with the person's carer / family member / advocate. Such practices are not consistent practice with the principles outlined in the UN convention and out to be prohibited by Guardianship regulations. Issue: Prescribed Forms of enduring guardianship appointments We welcome the suggestion that the forms could be amended to be more user friendly because the current format is difficult to navigate. Given that up to twenty-five per cent of people with disability come from a non-english speaking background, simplification and clarity of information makes good sense. Everyone benefits. We see merit in moving the explanatory notes from the main body of the form to another location within the document. In addition, locating notes containing instructions on completing the form in the margin of the document could be a positive step as long as the result is easier access for users. Issue: Functions of an enduring guardian The prescribed form for the appointment of an enduring guardian allows a person to nominate the functions which the enduring guardian will perform on their behalf. These functions include decisions about accommodation, health care, service provision, and consent to medical and dental treatment. An appointor can also include other functions but no guidance is currently provided in relation to the type of functions which might be included as additional functions. The Disability Council believes that additional guidance is highly desirable, as a person may be unaware of other types of functions they

4 would otherwise benefit from including in an appointment of an enduring guardian. Issue: Witnessing of enduring guardianship appointments We note that an eligible witness is defined in the Guardianship Act as: An Australian legal practitioner; A Registrar of the NSW Local Court; A person (or a person belonging to a class of persons) prescribed by the regulation We understand that the current provision determines that witnesses are limited to those with legal expertise and knowledge, and there is no additional class of persons deemed to be eligible witnesses. In NSW, an eligible witness is required to not only witness the signature of persons bound to the document, but more importantly, to certify that they are satisfied that both parties understand the effect of the document they are signing. We agree with the concern that the definition of eligible witnesses in NSW may deter members of the community from making an appointment. People with disability may have difficulty accessing the services of a legal practitioner due to the financial cost involved or physical inaccessibility, remoteness of location or language barriers. We note the observation by the NSW Public Guardian that there have been members of the community unable to have their enduring guardianship appointments witnessed by a Local Court Registrar due to the complex nature of matters raised by the particular appointment, including end of life issues. We are aware that in other Australian jurisdictions, the categories of persons who may witness an enduring guardianship appointment is wider than in NSW. We believe, therefore, that the category of witnesses should be extended to allow other classes of persons to be eligible witnesses. The Tribunal s Discussion Paper highlights some potential community groups who have expressed the view they should be eligible witnesses under the Act. These include health care professionals including general practitioners and dentists, and other groups including the NSW Public Guardian and the NSW Trustee or Justice of the Peace (JPs). We see no objection to adding such professionals. We would not favour, however, restricting the prescribed list of witness classes to a medical and / or quasi-judicial model. People with disability can live within extensive and complex formal and informal networks of support. Those networks can and often do contain skilled participants who are neither medical professionals nor actors in the legal

5 frameworks of NSW. There should be a role for demonstrably capable and skilled NGO candidates, including individual advocacy workers. In relation to all candidates of eligible witnesses, we believe education and/or training of potential new witnesses to be critical to establish confidence that the witness acts with full understanding of their responsibilities and the implications of his/her recommendations. This will provide an effective safeguard to the appointer to ensure the informed consent of appointing an enduring guardian and to also prevent any potential exploitation or abuse that may otherwise occur. Such an education and/or training program, we believe should encompass clear guidelines on how to respond to situations in which the capacity of the appointee to consent is highlighted as a concern. Issue: Changes of the definition of special medical treatment and/or major medical or dental treatment in the Guardianship Regulation We note the discussion about changes to special and major medical or dental treatment as defined within the Guardianship Regulation 2005 (NSW). We understand the following In relation to who can provide consent: Only the Guardianship Tribunal can consent to special medical and dental treatment The GT or a person responsible can consent to major medical or dental treatment Both the GT and the person responsible can consent to minor treatment Changing the definitions of major and special treatments would have an impact on how consent is sought and obtained in relation to medical treatment for persons with a cognitive disability. Some of the issues which have been raised in relation to the three different types of treatments are: Special Treatment - Special treatments are those which require a careful and considerable level of scrutiny. Consent to special medical treatment can only be provided by the Guardianship Tribunal. Special medical treatment includes, amongst other things, sterilization procedures, treatments to terminate pregnancy and use of drugs over extended periods. An issue that has been raised by the Public Guardian in relation to Special medical treatment is the inclusion of drugs of addiction in the definition of special medial treatment. It is observed that certain drugs, such as Oxycontin are often used as long-term pain relief for people with chronic conditions who may not be terminally ill. This is regarded as accepted medical practice and the need to apply for consent as special medical treatment is viewed unnecessary by some medical practitioners. It is suggested that the clause that includes drugs of addiction under the special medical treatment definition be removed.

6 If treatments such as Oxycontin pose no significant harm to patients and do not involve the ingestion of an addictive substance into the body, the issue arises whether a person responsible should have the authority to consent to this type of treatment as a major treatment. Major Treatment - Antidepressant medication currently falls within the definition of major treatments. It has been suggested that this form of medication be excluded from the definition of major medical treatments, which would result in its reclassification as minor treatment. Minor Treatment - There is currently no list of minor treatments in the Guardianship Regulation. Instead, minor treatments are defined as those which are neither special nor major treatments. If a treatment is not found in the list of major or special treatments, then it becomes a minor treatment by default. In relation to the definition of special medical treatment, it is the Disability Council s view that drugs of addiction which include those specifically used in the management of long-term pain relief for people with chronic health conditions who may not be terminally ill, which pose no significant risk to patients and don t involve the ingestion/injection of an addictive substance into the body to be removed from the definition of special medical treatment. However, the question arising of who should provide consent within the processes of guardianship should align with the approach outlined in the UK s Mental Capacity Act 2005, which makes an explicit legal assumption that individuals have legal capacity unless it is demonstrated to be reduced, interrupted or absent. For that reason, we believe that ultimately only one person should have the duty to take the decision on behalf of another, where that power has been granted. That person must be obliged to consult appropriately where possible and act in the interest of the person with disability to reach the least restrictive solution. But the final decision must fall to one individual. In relation to major medical treatment, it is recommended that Antidepressant medications be excluded from the definition of major medical treatment, which would therefore make it a minor treatment under the legislation. Issue: Recognition of interstate enduring guardianship appointments We support amendment of the Guardianship Regulations to enable appointments of enduring guardians under Western Australian legislation to be effective in NSW. Thank you for the opportunity to comment. If you seek any clarification of our views or further comment please contact the Disability Council s Executive Officer, Mr Dougie Herd.

7 Yours sincerely, Andrew Buchanan Chair Disability Council of NSW

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