Public GuardianADVOCACY REPORT2012

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Cover artwork courtesy of Studio ARTESArtwork: ‘Mathew’ by Lynda Strong

The Hon. Greg SmithAttorney GeneralParliament HouseSYDNEY NSW 2000

Dear Attorney

I am pleased to present the NSW Public Guardian’s Advocacy Report for the year 2011-2012.

This report is made under section 80 of the Guardianship Act 1987.

The report provides information about the Public Guardian’s key advocacy activities. The Public Guardian reports on other operational functions and financial activities through NSW Trustee and Guardian’s Annual Report 2011-2012.

Yours sincerely

Graeme SmithNSW Public Guardian

ISBN 978-1-922121-02-8 PrintISBN 978-1-922121-03-5 Online

Disclaimer This document has been prepared by the Department of Attorney General & Justice for general information purposes and while every care has been taken in relation to its accuracy, no warranty is given or implied. Further, recipients should obtain their own independent advice before making any decisions that rely on this information. (July 2012)

Copyright© State of New South Wales through the Department of Attorney General & Justice 2012.

You may generally copy, distribute, display, download and otherwise freely deal with this work for any purpose, provided that you include the copyright notice "© State of New South Wales through the Department of Attorney General & Justice 2012 " on all uses. However, you must obtain permission from the Department of Attorney General & Justice if you wish to (a) charge others for access to the work (other than at cost), (b) include the work in advertising or a product for sale,(c) modify the work, or(d) deal with any logos, emblems or images other than by the copying, distributing or displaying of a document or publication in its entirety. In particular, NSW Government logos must not be displayed on a third party website for the purposes of linking to the website.

Note this statement does not permit you to reproduce or use any images, logos, emblems (including the NSW waratah emblem) or third party material.

For alternative formats (audio tape, electronic or Braille versions) of this information contact the Public Guardian by phone: (02) 8688 6070 (voice), 1800 882 889 (TTY for people who are deaf or have a speech impairment), fax: (02) 8688 9797 or email informationsupport@opg.nsw.gov.au

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Summary by the Public Guardian

AIM OF THIS REPORT This report highlights some of the individual and systemic advocacy activities undertaken by the NSW Public Guardian. The Public Guardian has a statutory duty to educate the community about guardianship, the Guardianship Act and the system of guardianship in NSW.

Our work is about vulnerable people and this report provides some insight into their individual stories. The stories tell of the real life issues people with disability face and the scope of our advocacy to address their individual circumstances.

HIGHLIGHTS OF YEAR PASTOur involvement in the Grand Western Lodge closure was a major activity for the Public Guardian this year. The closure of this facility and the subsequent work of Ageing, Disability and Home Care (ADHC), in collaboration with others, including the Public Guardian, Guardianship Tribunal, NSW Trustee and Guardian (NSWTG) and People with Disability Australia, heralds a new future for the former residents.

We are often appointed at a stage when a person’s situation has either deteriorated or reached crisis point, requiring intensive intervention. The Public Guardian uses its experience as a guardian of individual clients to identify and raise issues at a systemic level. This year, working with key agencies, we have developed protocols that aim to close service gaps and prevent people reaching crisis level before intervention occurs. For example, new arrangements agreed between the Department of Family and Community Services (FACS), Ageing, Disability and Homecare (ADHC), the Public Guardian and the Guardianship Tribunal will make transitioning easier for young people leaving the children’s guardianship system and entering the adult guardianship system.

People with disability and complex care needs can often experience great delays in appropriate discharge from mental health units. Our work gives us a great opportunity to see the difficulties people face accessing community accommodation. By initiating an inquiry by the NSW Ombudsman we think we have helped to progress this issue and look forward to the recommendations arising from their report later in the year.

The launch of the Planning Ahead Tools website at NSW Parliament House was a significant event in February. We worked with NSW Trustee and Guardian (NSWTG) and the Office of Ageing, and on behalf of the Planning for Later Life Forum to develop a highly interactive format. The website gathers information about wills, powers of attorney, enduring guardianship and advance care planning. www.planningaheadtools.com.au

YEAR AHEAD A priority of the Public Guardian will continue to be our partnerships with other departments and non-government agencies. We believe that the promotion and protection of the rights and interests of people with impaired decision-making can only be achieved by working together. We are excited by the opportunity to join with ADHC and NSWTG in the development of a Supported Decision-Making Pilot. The future of supporting people with decision-making impairments must include models of decision-making support that see formal guardianship as truly a last resort. This initiative is an important part of the new approach to placing the person at the centre of planning and decision-making about their services and supports.

In NSW, unlike some of the other jurisdictions in Australia and overseas, the Public Guardian can only assist someone if formally appointed as their legal guardian. If the Public Guardian had a public advocacy role, we would be able to investigate matters earlier. Through advocacy, we would be able to change a person’s circumstances and prevent further harm, often without the need to be appointed as a guardian. In the coming year, we want to explore this possibility through a process of consultation, in line with the recommendations of the NSW Parliament in 2010.

We think the events surrounding the Grand Western Lodge closure are a good example of how vulnerable people with disability in NSW could benefit from the Public Guardian having an investigative role similar to that in other jurisdictions. With the power to investigate allegations of abuse, neglect and exploitation we would be able to make applications to the Guardianship Tribunal to appoint a guardian or financial manager. It would be possible to intervene earlier. For the people of the Grand Western Lodge, it could have meant moving to more appropriate accommodation much sooner.

I would like to take this opportunity to thank the dedicated staff of the Public Guardian’s office. The Public Guardian is appointed in complex situations where the issues are contentious and significant advocacy is needed to get vital services for the person under guardianship. It is not an easy job and I’m very grateful to the staff for their service and commitment.

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OUR ORGANISATION1923 TOTAL CLIENTSas at 30 June 2012

WHO WE AREThe Public Guardian in NSW

The Public Guardian promotes the rights and protects the interests of people with disability through guardianship, advocacy and education. Our vision is a supportive community in which all people are included as valued members and their human rights promoted.

The Public Guardian is a legally appointed substitute decision maker for people with impaired decision-making. Under the Guardianship Act 1987 the Public Guardian can be appointed by the Guardianship Tribunal or the Supreme Court to make health and lifestyle decisions (not financial decisions).

Our actions and decisions as guardians are legally the same as if the person under guardianship had made them themselves.

We work with people with disability such as dementia, intellectual disability, brain injury or mental illness. We provide community education about guardianship, enduring guardianship, planning ahead and other aspects of our work. We are only appointed when there is no other person able to take on the role. We support people appointed as guardians for their family or friends, including enduring guardians, through our Private Guardian Support Unit.

We advocate at individual and systemic levels on behalf of people with impaired decision-making capacity.

OUR COMMITMENT TO CHANGE

The Public Guardian has had an important role in effecting positive change in the lives of people under guardianship through his systemic advocacy work.

Standout quote* According to the Productivity Commission Inquiry Report into Disability Care and Support (July 2011) people with disabilities are among the most disadvantaged groups in Australian society, in measures of social isolation, financial status and personal wellbeing1

1 Productivity Commission, Inquiry Report into Disability Care and Support’, Australian Government, Canberra, July 2011, p. 111.

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Above artwork: ‘Untitled 2’ by Sophie Carter

OUR VALUES

RespectGuidanceSupportCommunity

Disability Type Graph* Autism 39Brain Injury 223Dementia 356 Eating Disorder 6HIV Aids related 10Intellectual Disability 678Neurological 83Other 1422 Psychiatric Disorder 376

2 This data set is made up of disability types: developmental, advanced age, deaf and blind, physical and reason unknown.

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CASE STUDY 01

Advocating for community based accommodation

Roberto, aged 90 has dementia and multiple health issues. Four years ago he appointed his children Ben and Melissa to be his joint enduring guardians.

Ben later made an application to the Guardianship Tribunal to have these appointments reviewed because he and Melissa disagreed about Roberto’s needs.

The Guardianship Tribunal held a hearing. Roberto was in hospital and his treating team recommended he be placed in an aged care facility. The Guardianship Tribunal appointed the Public Guardian to make decisions about his accommodation, services, medical and dental consent and health care.

Melissa wanted to care for Roberto at home. We advocated for the Aged Care Assessment Team to assess this option and we decided Roberto would be discharged home with services and Melissa’s care, for a three month trial.

During the trial we visited Roberto and Melissa. Roberto was happy that he could sit in his garden and have a cigarette when he wanted to. He had fallen and had ongoing health problems but the situation was manageable and what Roberto wanted. After assessments and information from family and service providers, we consented to Roberto remaining in his home with Melissa’s care.

1,115 accommodation decisions made in 2011-2012

All names and details have been adapted for privacy in this report.

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GENERAL PRINCIPLES

The principles of the Guardianship Act 1987 3

The welfare and interests of the person should be given paramount consideration.

The freedom of decision and freedom of action of the person should be restricted as little as possible.

The person should be encouraged as far as possible to live a normal life in the community.

The views of the person should be taken into consideration.

The importance of preserving family relationships and cultural and linguistic environments of the person should be recognised.

The person should be encouraged as far as possible to be self reliant in matters relating to personal, domestic and financial affairs.

The person should be protected from neglect, abuse and exploitation.

The community should be encouraged to promote these principles.

3 Guardianship Act 1987 (NSW) S.4 General Principles. 7

OUR DECISION-MAKING AND ADVOCACY

Most people with disability can make their own decisions. Guardianship is a last resort when a decision needs to be made and the person lacks capacity to make the decision. Through our community education, we encourage those working with and caring for people under guardianship to help the person be self reliant in matters relating to personal, domestic and financial affairs.

The aims of guardianship are to make the decision the person would have made themselves or where that’s not possible, to make decisions in their best interests and to advocate for better life outcomes. People with disability are among the most disadvantaged groups in Australian society, in measures of social isolation, financial status and personal wellbeing.4

We represent some of the most vulnerable people in NSW, which provides us with insight into everyday issues and problems for people with a broad range of disabilities. Part of our role is to use this insight to draw attention to gaps and inequity. Individual and systemic advocacy is integral to good decision-making and we believe guardianship can promote the rights of vulnerable people.

In this report we highlight some significant events in our systemic advocacy in 2011-2012.

Organisational chart *

Each team is managed by a Regional Manager and staffed withPrincipal Guardians, Senior Guardians, Guardians, Administrative support

4 ibid., p. 4. 8

Information flow from individual to systemic advocacy Guardians sometimes identify issues that cannot be solved with individual advocacy. They report issues to supervisors so that senior managers can raise them at the systemic level for action. Staff are advised of outcomes and any changes to guardianship work.

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OUR LEADERSHIP TEAM

“We should strive to promote the rights and protect the interests of the state’s most vulnerable citizens”.

Photo *Left to right: Graeme Smith, Public Guardian, Patricia Davidson Assistant Director - Operations,Frances Rush Assistant Director - Policy and Advocacy.

2231 recorded client visits in 2011-2012

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Data gathering + agency collaboration

Outcomes affect people with disability.

Individual issues identified

INFORMATION TEAM

SUPPORTING OUR COMMUNITYPRIVATE GUARDIAN SUPPORT UNIT (PGSU)

The PGSU supports private and enduring guardians in NSW. These guardians are appointed by the Guardianship Tribunal or through the system of enduring guardianship.

PGSU responds to requests for information and assistance but does not supervise guardians. We publish Now You’re the Guardian, a guide to guardianship, and Onguard, a regular newsletter.

Guardians most commonly contact us about their rights and responsibilities. We receive approximately 250 calls a year from guardians; this has been consistent over the last three years. We think this is a relatively small number, representing 13.8% of known guardians. Guardians tend to contact us when they are at a critical stage in their decision making and advocacy. Guardians have told us our publications and the service we provide are extremely helpful, but that they value their independence.

We talk to guardians about how to understand the NSW Guardianship Act, negotiate services and advocate for the person’s needs.

Many people who call us are confused about the difference between the Public Guardian, Guardianship Tribunal and NSW Trustee and Guardian. We explain the difference in our respective roles and decision-making authority. The Guardianship Tribunal decides if an order is needed and who the guardian or financial manager should be. The Public Guardian is responsible for health and lifestyle decisions and NSWTG makes financial decisions.

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EDUCATION & COMMUNITY INFORMATION

We have a responsibility under the Guardianship Act 1987 to give the community information about the appointment and functions of guardians, the rights of people under guardianship and our procedures.

We provide information free of charge in a range of ways:

2 guidebooks / 5 fact sheets / 4 booklets / 4 easy read fact sheets5 editions of Onguard / 500 requests for publications58 community education sessions 2088 participants in 41 metropolitan and 13 regional locations2513 requests for information 300 average hits on our website each month

FEEDBACK FROM GUARDIANS“The night after I called the PGSU was the first night I had slept in weeks. You knew what you were talking about. Your information helped me so much to understand guardianship and to understand what I was entitled to as Jason’s mother, carer and now guardian. I didn’t know if what I was doing was right so I was very reassured by your service.”

“You don’t get a lot of information on the hearing day, so it was the arrival of the guardianship book and my subsequent phone call to the PGSU that has given me hope.”

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CASE STUDY 02

Creating harmonious cooperation between services

We supported Rhonda, a private guardian, at a mediation conference. Rhonda is the appointed guardian for Simon, a man with an intellectual disability and complex needs. She was concerned with the lack of communication from the service provider and their refusal to provide information to her. She was concerned with the support Simon was receiving and that the service provider was making decisions outside of their role. By supporting Rhonda at this meeting we clarified the roles and responsibilities of both the guardian and the service provider, in the decision-making process. The service conceded that they could do a better job working with Rhonda and an agreed plan of action was developed. Rhonda felt this was a good outcome and that her ability to advocate had been strengthened by our involvement.

1372 private guardianship orders as of 30TH JUNE 2012

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COMPLAINTS

Guardianship decisions are about important personal issues. The decisions we make can have an impact on not only the person under guardianship but also the people involved in their lives. We expect that not everyone will agree with our decisions and actions and sometimes complaints will be made.

Our complaints process helps us to explain what we do and why. Occasionally we may not meet all our standards. The complaint process allows us to reflect, correct any mistakes and improve our practice.

In 2011-2012, we received 49 complaints including complaints made to members of parliament, compared with 48 received last year. This year’s total represents slightly more than two complaints for every 100 clients. We hope the small number of complaints we receive reflects our good working practices.

However, we recognise the need to continue to promote our complaints system. Most complaints this year were about accommodation decisions (12), access (5) and health care issues (5). In most cases we provided information or an explanation of our role and legal responsibilities to the person making the complaint. In four matters we apologised: once for our slowness to appoint an officer and three times for not seeking views appropriately.

We analyse complaints to see if there are any guardianship practices that need to change to improve our service. For example, we recommended that staff review their decision-making and be clear about when to seek views as part of that process.

INTERNAL REVIEW OF DECISIONS

If the person under guardianship, or someone close to them, disagrees with a decision that we make they can ask for the decision to be reviewed. The Assistant Director Operations is our ‘review officer’. She can uphold the original decision or change it.

EXTERNAL REVIEW OF DECISIONS

If a person disagrees with our decision after it has been reviewed, they can apply to the Administrative Decisions Tribunal (ADT) for an external review.

It is clear to us that accommodation decisions are the ones that provoke the strongest feelings from the people involved, and where opinions about what is best for the person under guardianship vary the most.

2 Complaints for every 100 clients

65 Reasons for Decision Reports written in 2011-2012

2 Graphs – (reviews/ADT matters)*

16 Reviews Requested by 12 Family, 2 Friends, 2 Advocates12 Decisions Upheld, 2 not investigated as clients died and 2 pending outcomes18.7% Accommodation Decisions81.2% Access Decisions

5 ADT MattersApplication made by 1 person under guardianship, 3 Family & 1 Friend2 Decisions Upheld & 3 pending outcomes

80% Accommodation Decisions20% Access Decision

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ADVOCACY HIGHLIGHTS

BOARDING HOUSE CLOSURE

People with disability in NSW are more likely to be institutionalised than people without disability according to data from the Australian Institute of Health and Welfare. 5 Our work gives us a view of the difficulties people with disability face accessing appropriate community accommodation.

Grand Western Lodge

Grand Western Lodge in Millthorpe, NSW is a boarding house that was home to 48 people with disability aged from 31-78. Over nine years Grand Western Lodge was the subject of three reports by the NSW Ombudsman. In 2011 Ageing, Disability and Home Care (ADHC) found 37 high level breaches, placing ‘the immediate health, comfort, safety and proper care of residents at risk.”6 There were allegations of physical and sexual abuse, violence, illegal detainment and over-medication. Advocacy by peak group, People with Disability Australia. (PWD) and media exposure raised public awareness of these problems and applications were made to the Guardianship Tribunal by ADHC.

On 30 June 2011 the Public Guardian was appointed with authority to make accommodation and other decisions for 13 people, increasing to 33 people by September. Private guardians were appointed for a further five people and several joint orders were made. In these joint orders we were generally given an advocacy function only, and family members were given other areas of decision-making.

ADHC undertook extensive health and functional assessments of the people removed from Grand Western Lodge. To make decisions about where people should live we sought views from all the former residents and their families and friends to find out where and how people wanted to live. All residents were actively involved in choosing where they wanted to live and all are now living in permanent accommodation.

The successful removal of people at risk of abuse from the Grand Western Lodge, and their placement into appropriate housing demonstrates what can be achieved with advocacy, collaboration amongst agencies and funding.

“Guardianship is a failure of advocacy.”.7

The Public Guardian can only act on behalf of people under guardianship orders. While there has been a good outcome for the former residents of Grand Western Lodge, we are concerned about the length of time it took for action to be taken. If the Public Guardian had a formal advocacy role together with appropriate investigative powers, we would be able to investigate allegations of abuse, neglect and harm, and intervene earlier.

5 Australian Institute of Health and Welfare, ‘Disability support services 2009-2010: report on services provided under the National Disability Agreement’, Disability series, Cat. No. DIS 59, 2011. 6 A Horin, ‘Disturbing tales from behind closed doors’, The Sydney Morning Herald, 16 July 2011.?Ben Bodna, first Victorian Public Advocate7.

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WORKING TOGETHER WITH……

……..Housing NSWFrom 1 May all social housing applicants must keep their contact details up to date or risk having their application closed. We met with Housing about how the changes could adversely affect many of our clients and advised them of 76 clients whose applications were closed because of no known address. Housing agreed to consider the advice of financial managers and guardians, to ensure our clients are not disadvantaged by the policy.

……NSW POLICE AND AMBULANCEWe met with NSW Police and Ambulance Services of NSW to renew the Memorandum of Understanding (MOU) between our services. The MOU is about how we work together to use our coercive accommodation function. We reviewed our data and agreed that the MOU has helped us implement decisions and support vulnerable people. The MOU was extended until the end of November 2012 with a view to it continuing in the future.

…….THE LEGAL SYSTEM Our guardians noticed that people under guardianship were unable to exercise their right to seek an Apprehended Violence Orders (AVO) through the courts, because of their disabilities. Advice from the Crown Solicitor's Office enabled us to make a successful AVO application for a vulnerable person. We provided input into the review of the Crimes Act to clarify our role as an AVO applicant. In September 2012 the Crimes Act was amended. A legally appointed guardian can apply for an AVO, seek a revocation or variation of a final AVO on behalf of a person under guardianship.

……NSW Health Advance Care PlanningThe Public Guardian was a member of NSW Health’s End of Life Decisions Policy Review advisory group. The Advanced Care Planning for Quality Care at End of Life: Strategic and Implementation Framework draft was released in 2011-2012. This is an important area in our decision-making and we look forward to the final Framework.

…..The Law Reform Commission: People with Cognitive and Mental Health Impairment in the Criminal Justice System We provided a submission to the NSW Law Reform Commission in September 2010, detailing our experiences and concerns about the criminalisation of behaviours exhibited by people with mental illness. Case studies of our individual advocacy strategies highlighted the important role of the Public Guardian in representing the rights and liberties of people with mental health impairment in matters before NSW courts. We eagerly await the Commission’s report.

….The Plain English Foundation In line with the United Nations Convention of Persons with Disabilities we recognised the need to make our information more accessible to people with disability and their families, friends and services. We worked with the Plain English Foundation to change some of our templates, simplify our reports and generally improve our written communication to make it more person-centred.

…….UNIVERSITY RESEARCHERSWe are involved in a number of projects we hope will build on the body of research about the needs of people with disability and decision-making incapacity. The outcomes of the projects will assist our individual work and systemic advocacy.

We have agreed to contribute to the University of New South Wales (UNSW) Mental Health Disorders and Cognitive Disabilities in the Criminal Justice System study involving a cohort of 2731 people. The aim of the project is for a better understanding of the needs and characteristics of people in contact with the criminal justice system and in need of human services, including people under guardianship.

We are supporting the National Health and Medical Research Council Partnership for Better Health Project (NHMRC). The project is led by Associate Professor Trollor at the UNSW’s Department of Developmental Disability Neuropsychiatry. The project themes align with our concerns about inadequacies in the current service system for people with dual diagnoses of intellectual disability and mental illness. We expect that the NHMRC research will provide evidence that can support service models for best treatment outcomes.

We have partnered with Queensland University of Technology along with the Queensland Office of Adult Guardian and Civil Administrative Tribunal, NSW Public Guardian and Guardianship Tribunal and Victorian Civil Administrative Tribunal and Public Advocate in an End-of-life research project. The project aims to determine the knowledge and legal obligations of doctors in end-of-life decision matters. We helped develop survey questions relevant to the NSW context. We’re keen to see how this research will advance the interests of patients and influence our decision-making.

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CASE STUDY – 03

Creating individualised service models

Liam was in his early 30s and an inpatient in a psychiatric hospital when he first came under guardianship in 2005. He has a range of cognitive difficulties including alcohol related brain injury, chronic disorganised schizophrenia and polysubstance abuse. He had several admissions to psychiatric units and had been homeless over the years.

Liam was transferred to another mental health unit in the Illawarra region in 2007. In 2010 staff began to develop a graduated discharge plan for Liam, involving increasing periods of trial leave at a group home managed by the hospital. However, Liam became very unwell and was physically intimidating to others. The trials have shown that Liam cannot manage in the community without an individualised model of support.

Liam’s status has changed from involuntary to voluntary, but there are no plans for his discharge in the foreseeable future, due to a lack of suitable accommodation options.

We’re hopeful the Ombudsman’s inquiry will shine a light on the lack of community accommodation for people like Liam. Article 19 of the UN Convention on the Rights of Persons with Disabilities states that people with disability have the “right to live in the community”, with choices, full inclusion, participation and enjoyment equal to others”.

There are many more people just like Liam who remain in hospital.

142 orders with an Advocacy Function

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DELAYED DISCHARGE FROM MENTAL HEALTH UNITS

A routine visit to Shellharbour hospital to see three people under our guardianship has lead to an investigation by the NSW Ombudsman. All three people we met were ready to be discharged from hospital but had nowhere to go and no services to support them. Our initial advocacy identified a group of people who do not ‘fit’ the criteria for current housing and support models provided by NSW Health or disability services in the Illawarra region.

In response to this we looked at our client data for trends showing where a person may be in a mental health unit unnecessarily because of a lack of appropriate community options. We found 68 clients in need of discharge. We took the matter to the NSW Ombudsman and began discussions with them and the Mental Health Review Tribunal (MHRT). We continued to refine our data and found that some people had been in hospital for many years.

The Ombudsman began their investigation in mid 2011 under the Community Services (Complaints, Review and Monitoring) Act 1993. They will make recommendations about the provision of accommodation and services to people with psychiatric and intellectual disability to ‘respective Ministers’. The report will be made public in August/September 2012.

CASE STUDY – 04 Jenny has lived on the streets for the last four years. In the past she has held tenancies, usually following intervention from services assisting her on the street. She then relinquishes the properties voluntarily as they became depositories for her ‘collections’ while she lives on the street.

Jenny’s hoarding in public places becomes a waste control and financial issue for councils.

We became involved three years ago with the first guardianship order for Jenny. Our early actions involved referrals for housing and support services as well as consenting to clean-ups. It’s been a challenge weighing Jenny’s right to protection verses her dignity of risk and lifestyle choices. This is especially so when waste control issues impact on the health and safety of the wider community and she is vulnerable on the streets.

Now better informed, our advocacy and actions help Jenny to manage her hoarding while she is living on the streets as well as the expectations of others. A coordinated approach recognises Jenny’s individual choices first and foremost.

“The pain of keeping it is easier than the pain of throwing it out.” Timothy, Stuff Happens CD.

DEVELOPING OUR KNOWLEDGE AND RESPONSES

People with squalor and hoarding behaviours represent a small number of people under our guardianship. While the numbers are small, they can be some of the most vulnerable people we advocate for and work in this area is complex. To help our staff respond better to their needs, we joined with NSW Trustee and Guardian (NSWTG) to investigate the issues behind squalor and hoarding.

With funding from NSWTG, independent consultants Susan Graham and Ruth Melville created and delivered a training package for Public Guardian and NSWTG staff. They gave us a toolkit to help improve outcomes for people under guardianship living with squalor and hoarding.

With Catholic Community Services, we produced Stuff Happens8 a CD of people telling their own stories about living with squalor and hoarding as well as commentary by academics, clinicians, service providers and our staff. We also presented papers at the National Hoarding and Squalor conference in February 2012. The research shows that simply ‘cleaning up’ will never resolve the problem of squalor and hoarding temporarily.9 With strong partnerships across government and non-government agencies, a strategic approach leads to more successful management of these complex situations.

142 orders with an advocacy function

8 Stuff Happens: Our relationships to the “Stuff in our lives”, Audio recording, NSW Public Guardian and Catholic Care Services NSW/ACT, Sydney, 2012. 9 Department of Health, ‘Hoarding and Squalor’, discussion paper, Ageing and Aged Care Branch, State Government of Victoria, Melbourne, 2012.

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“Over the past year we delivered training around NSW about the protocol, with the Guardianship Tribunal.”

1,426 MEDICAL AND DENTAL consents in 2011-2012

LEAVING CARE PROTOCOLFollowing discussions between the NSW Ombudsman’s Office, the Department of Family and Community Services (FACS) and Ageing, Disability and Home Care (ADHC) it was agreed the Public Guardian could play a constructive role as an advocate for young people transitioning from the child protection system to adult disability services. At the end of June 2011, a protocol between FACS, ADHC and the Public Guardian came into effect.

The purpose of the protocol is to involve the Public Guardian early in the transition process so we can advocate on behalf of the young person sooner. The Minister for Family and Community Services retains legal parental responsibility for the young person until he or she turns 18. Case management is shared between FACS and ADHC. Our role is to contribute to the planning process, seek support options and to advocate for an effective transition plan.

In collaboration between the Public Guardian, the Guardianship Tribunal and FACS over the past year, we delivered protocol training to FACS staff around NSW. A year on, the process has highlighted the need for comprehensive support needs assessments early in the planning stages, adherence to the transition plan and for more stringent review of the plan post transition.

CASE STUDY – 05

Andrius has an intellectual disability, mental health issues and other complex health needs.

Andrius was under the care of the Minister for Family and Community Services from the age of 12. When he was 17, an application was made to the Guardianship Tribunal for a guardian to be appointed. He could not stay in his accommodation for much longer and his carers could see that he needed someone to advocate on his behalf for the right services.

When Andrius turned 18 the responsibility for his service provision moved from the Minister to ADHC. We advocated for him to receive case management support to help with his accommodation, living skills and other areas of his life, like employment. Andrius had an ADHC case manager appointed who linked him with a youth support service. This service now provides case management and supports Andrius with his living skills.

There are still ongoing issues for Andrius such as his contact with family and friends, managing his health needs, and contact with the criminal justice system. We will continue to advocate and make decisions for Andrius.

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987 SERVICES DECISIONS made in 2011-2012

planningaheadtools.com.au

The Planning Ahead Tools website was an initiative of the Planning for Later Life forum that recognised the need for simple and easily accessible planning ahead information. We are a member of the forum, which includes government and non government agencies. It is aligned with the NSW State Plan, Towards 2030, a strategic whole of government plan to meet the needs of an ageing population.

The project was jointly funded by the NSW Office for Ageing and NSW Trustee and Guardian (NSWTG), and the Project Officer was from the Public Guardian’s office. The website was launched on 14 February 2012 by the Attorney General, the Hon. Greg Smith and the Minister for Disability and Minister for Ageing, the Hon. Andrew Constance. The website contains comprehensive information about financial, health and lifestyle planning, including tools to refine and build an individual user’s resources. The Public Guardian administers the website together with NSWTG.

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WORKING FOR….

In 2010 the NSW Legislative Council’s inquiry10 into substitute decision-making for people lacking capacity recommended that the NSW Government consult with relevant stakeholders and develop a proposal to establish an Office of the Public Advocate. The issues recommended in a proposal include how a Public Advocate would have a systemic and individual advocacy role and what impact it would have on the number of people under guardianship. Other issues include the authority of a Public Advocate to investigate services, take legal action on behalf of people with disability and be involved in court and tribunal proceedings.

The Public Guardian’s office is currently preparing a discussion paper on these issues. It will be followed by a targeted consultation process engaging relevant stakeholders in this discussion. The discussion paper will be available on the Public Guardian’s website when released.

Supported Decision Making

The Public Guardian and NSW Trustee and Guardian (NSWTG) are collaborating with Ageing, Disability and Homecare on the development of a supported decision-making pilot. The pilot provides the basis for the government’s new policy direction towards a person centred disability service system. The new policy direction will be central in supporting people with disability to make informed choices about the services they receive and how they are provided and funded. Some people will need support in this decision-making process. The pilot will explore the range of techniques and systems needed to ensure people can properly participate. An effective way to provide supported decision-making will hopefully avoid the need to appoint a greater number of guardians and financial managers.

“The guardian must be an advocate for the person so that they may flourish and live in safety and security as far as possible. Much more is expected from a guardian than being a disinterested decision–maker protecting, promoting and balancing a range of personal rights and freedoms”

Barbara Carter (2010) Adult Guardianship: Human Rights or social justice? 18 JLM p.150

10 Standing Committee on Social Issues, Substitute Decision-Making for People Lacking Capacity, report for the Legislative Council, NSW, February 2010.

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If the Public Guardian had a public advocacy role, we would be able to investigate allegations of abuse, neglect and harm, allowing earlier intervention.

CONTACT DETAILS

Head Office & Western Regional Office

Justice Precinct Offices,160 Marsden Street, Parramatta NSW 2150Locked Bag 5116 Parramatta NSW 2124DX 1335 SYDNEYTelephone: 02 8688 2650Facsimile: 02 8688 9797NSW STD callers: 1800 451 510TTY: 1800 882 889Private Guardian Support Unit (PGSU)Telephone: 02 8688 6060Information and Support Telephone: 02 8688 6070informationsupport@opg.nsw.gov.auwww.publicguardian.lawlink.nsw.gov.au

Southern Regional Office

Level 2 Downing Centre,143-147 Liverpool Street, Sydney NSW 2000PO Box 20487 World Square Sydney 1235DX 1335 SYDNEYTelephone 02 9287 7660NSW STD callers: 1800 451 428Facsimile: 9287 7355

Northern Regional Office

Level 3 4 Watt Street, Gosford NSW 2250PO Box 487 Gosford NSW 2250DX 7229 GOSFORDTelephone: 02 4320 4888NSW STD callers: 1800 451 694Facsimile 02 4320 4818

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EASY READ PUBLIC GUARDIAN ADVOCACY REPORT

THIS DOCUMENT is about the Public Guardian says what work we do says what good things happened this year says what things changed this year.

THE PUBLIC GUARDIAN makes decisions for people who can’t make their own decisions gives information to private guardians works with other people and services advocates for better choices for people with disability. Advocate means to speak up for another person.

THE REPORT SAYS how our work with some people shows the big problems affecting lots of people how we use information to advocate for people with disability how we work together with other agencies.

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THIS YEAR WE WORKED WITH OTHER PEOPLE TO move people out of a boarding house get homes for people living in hospital make a website called Planning Ahead Tools get plans changed to help young people leaving Care.

IN 2013 WE WILL talk to people about becoming the Public Advocate work with ADHC about supported decision making.

IN THE FUTURE THE PUBLIC GUARDIAN WANTS better service options for people with disability support for people to make their own decisions more housing places.

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Acknowledgement to Studio ARTES

We’d like to give thanks and recognition to Studio ARTES Northside who has allowed us to showcase some remarkable artworks in this report. Studio ARTES Northside offers creative programs with whole of life outcomes for adults with disabilities. Driven by a passion for inclusion, equity and respect, Studio ARTES caters to adults with disabilities regardless of their age or funding status. Studio ARTES uses creativity to support the individual needs of participants, inspiring members to realise and express their true potential.

For more information about Studio ARTES and their programs visit their website www.studioartes.com.au

‘Matthew’Artist: Lynda Strong

UntitledArtist: Sophie Carter

‘Care’ & ‘Orange house, red roof with wall’Artist: Alison Hall – HPB

UntitledArtist: Matthew Calandra

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