Inquiry into the social inclusion of Victorians with a disability
Submission to the Parliament of Victoria, Family and Community Development Committee
13 February 2014
Contact: John Chesterman Manager, Policy and Education Office of the Public Advocate
Main writer: Mark Feigan Policy and Research Officer Office of the Public Advocate
Office of the Public Advocate Level 1, 204 Lygon St, Carlton, Victoria 3053 Tel: 1300 309 337 Fax: 1300 787 510 www.publicadvocate.vic.gov.au Contents
1. About the Office of the Public Advocate submission ...... 3 2. Summary of recommendations ...... 4 3. Definitions and terminology ...... 6 4. Victorians with a disability and social inclusion ...... 18 5. Disability Act (2006) ...... 27 6. Looking to the future ...... 33 7. References ...... 34
13 February 2014 2 1. About the Office of the Public Advocate submission
1.1. The Office of the Public Advocate (OPA) is a statutory office, independent of government and government services that works to protect and promote the rights, interests and dignity of people with disabilities.
1.2. OPA provides a number of services to work towards these goals, including the provision of advocacy, investigation and guardianship services to people with cognitive impairments or mental illnesses. In the last financial year, 2012–13, OPA was involved in 1,590 guardianship matters, 386 investigations and 394 cases requiring advocacy.
1.3. Under the Guardianship and Administration Act, OPA is required to arrange, coordinate and promote informed public awareness and understanding through the dissemination of information about these topics.
1.4. The OPA Advice Service offers information and advice on a diverse range of topics affecting people with a disability. The issues raised by people contacting OPA are often complex, requiring a high level of expertise. During 2012–13, the Advice Service handled 13,835 enquiries, a 3.3 per cent increase from the previous year. The contact patterns have been very consistent over the last few years. The majority of telephone calls are from people who do not have a disability. The largest group of callers was family and friends (39.4 per cent), followed by health and community services (27.4 per cent). Most calls related to guardianship and administration (33 per cent) and enduring powers of attorney (25 per cent). The other significant category of calls related to medical consent and healthcare treatment (12 per cent).
1.5. OPA coordinates a Community Education Program where staff address both professional and community audiences on a range of topics including the role of OPA, guardianship and administration, enduring powers of attorney and medical decision-making. Last year, the program delivered 189 presentations to a total audience of 6271 people. The largest audience group for presentations was health and community professionals (48 per cent). The remaining presentations were to general public audiences, tertiary students, and legal and justice services. 1
1.6. Advocacy on behalf of people with a cognitive impairment is fundamental to our work, and this submission particularly focuses on social inclusion issues for Victorians having high support needs associated with a significant cognitive impairment.
1.7. This OPA submission directly addresses the questions asked in the Family and Community Development Committee’s submission guide.
1 Office of the Public Advocate, "Office of the Public Advocate Annual Report 2012-13," (Melbourne: 2013).
13 February 2014 3 2. Summary of recommendations
RECOMMENDATIONS
1. The Victorian Government should adopt and, where appropriate, incorporate into new guardianship and powers of attorney legislation, the supported decision- making proposals made by the Victorian Law Reform Commission in its Guardianship Final Report.
2. The government should monitor the effectiveness of the Office of the Public Advocate's supported decision-making trial, and undertake to consider provision of ongoing funding for this program should it prove to be beneficial to otherwise isolated people with cognitive impairments.
3. ‘Social inclusion’ should be defined to mean that all Victorians, including Victorians with disability, are respected and valued, and are encouraged, supported and able to take part fully in the life of our society.
4. The government, in liaison with the National Disability Insurance Agency, should develop and implement a plan for the closure of all remaining residential institutions for people with disability in Victoria.
5. The government should develop in consultation with relevant parties a holistic disability justice strategy that gives priority to evidence-based ways of quickly and sustainably reducing the number of people with disability incarcerated due to inadequate support for their disability needs.
6. The government should embark upon a well-conceived and sustained awareness-raising campaign that promotes the social inclusion of people with disability and mental ill health.
7. The government should increase funding for all aspects of disability service delivery so that funded services, advocacy organisations and safeguarding bodies can meet the requirements of the Disability Act and the goals of the Victorian State Disability Plan.
13 February 2014 4 RECOMMENDATIONS continued
8. The Parliament should consider amending the Disability Act so that its important safeguards and positive measures for people with an intellectual disability are extended to people with other forms of established and significant cognitive impairment.
9. The government should monitor, evaluate and address the effect that the consumer choice philosophy, which is central to the operation of the National Disability Insurance Scheme and recent state disability funding reforms, is having on the social inclusion of Victorians with significant cognitive impairment or mental ill health.
13 February 2014 5 3. Definitions and terminology
3.1 What needs to happen to ensure that people’s individual disability and experience are accounted for in efforts to increase their social inclusion?
3.1.1 Context Since the twin reforming Acts of 1986, the Intellectually Disabled Persons Services Act and the Mental Health Act, Victoria has increasingly implemented personalised and community-based services and treatment, with the goal of inclusion in the mainstream of society. There has been an accelerating shift away from the block or de-individualised treatment of people with disability requiring significant assistance in daily activities. This shift in thinking and service approaches towards inclusion is not yet fully completed.
The UN Convention on the Rights of Persons with Disabilities 2006 (the Convention) draws attention to the measures still required to advance the full social inclusion of people with disability, with considerable applicability to the committee’s terms of reference.2 The Convention was signed by the Commonwealth of Australia in 2007 and ratified in 2008.
OPA welcomes the Committee’s terms of reference and its inquiry into the social inclusion of Victorians with disability. The inquiry by this committee follows in the footsteps of the pioneering policy development work done by the ‘Premier’s Committee’ in 1979.3 That committee identified the tension in public policy that existed then between treating people with (intellectual) disability as if they were considered as fundamentally different, ‘a special, vulnerable group‘, or being considered as equals, the same as other people in their rights‘.4 This inquiry is occurring in a changed and still changing world where that question has been mostly, although not completely, settled. This inquiry can help ensure that Victoria continues to advance towards achieving the inclusive policies and services required by people with disability for a dignified and full life, articulated by the Convention.
OPA notes the following obligations upon the Victorian Government arising from the Convention that are of particular importance for developing and implementing inclusive policies and services:
promoting and protecting human rights in all programs and policies (Article 4) recognition as persons before the law (Article 12) providing better services by promoting staff training (Article 16) ensuring all services and facilities are effectively monitored by independent bodies to prevent all forms of violence, abuse and exploitation (Article 16) identifying, investigating and wherever possible prosecuting all instances of violence and abuse (Article 16) providing accommodation support without obliging people to live in a particular living arrangement and supporting the opportunity to choose one’s place of residence and living arrangements (Article 19) access to appropriate disability services and supports (Article 19)
2 United Nations General Assembly, "Convention on the Rights of Persons with Disabilities," (United Nations, 2006). 3 Jack L. Evans, "Report of the Victorian Premier's Committee (on Mental Retardation): Blueprint for the 1980's," Australian Journal of Mental Retardation 5, no. 6 (1979). 4 Mark Feigan, "The Victorian Office of the Public Advocate: A First History 1986 – 2007" (La Trobe University, 2011), p. 46.
13 February 2014 6 services delivered support full participation and social inclusion (Article 26) access to public housing programs (Article 28) social protection (Article 28) support for political and social participation (Article 29) collect relevant information to inform policy (Article 31) collect relevant information to address barriers (Article 31)
In Victoria, we can proudly point to many measures that have advanced many of these provisions of the convention. For example, the ‘independent monitoring authority’, provisions of Article 16 are met to an extent by OPA’s operation of the Community Visitors Program.
Following on from the progress and plans of previous years, the Victorian Government has developed the State Disability Plan 2013–16. (State Plan)5 The framework of this plan is to:
uphold the rights of people with a disability remove and prevent structural, systemic and attitudinal barriers to participation build a welcoming community give the individual choice and control over their supports and services enable people with a disability, their families and carers to get the right mix of services and supports.
The aspirations of this plan broadly correspond with many of the elements of the convention highlighted above. OPA supports the State Plan vision and direction, based on a ‘multilayered approach’ to its context: people with a disability are more likely to live in poverty, to have fewer educational qualifications, to be out of work, to experience discrimination, violence and abuse and to be unable to make basic choices about their lives.6 The work of the committee through this inquiry can be of considerable assistance in identifying, articulating and promoting necessary additional initiatives and measures to help guide the implementation of the State Plan.
OPA’s main concern in making this submission is that very many people with disability, particularly those with higher support needs, continue to live precariously. We use the term precarious to refer to the situation of people with disability where many of the following experiences are a large and ongoing part of your life:7
being socially isolated, even excluded having few or no friends having most of your relationships with people paid to be with you being dependent on others for everyday assistance causing a power imbalance in your relationships actual or threatened violence, neglect or exploitation being brutalised and bullied
5Department of Human Services, "Victorian State Disability Plan 2013–2016," (Victorian Government, 2013). 6 Ibid., p. 2. 7 After Fiona Kumari Campbell, who suggests this term as a more pertinent alternative to the concept of vulnerability. Fiona Kumari Campbell, Discover: Ableism with Fiona Kumari Campbell. (Critical Disability Studies, Manchester Metropolitan University, 2011).
13 February 2014 7 pervasive discrimination and devaluation; being treated as a second-class citizen or not a full person; de-individualisation not being automatically accepted as a participant, and only being accepted if an adjustment is afforded being worn down by an everyday life filled with barriers and stigma bodily experience of impairment which for some people may involve discomfort and pain feelings of loss; awareness of being treated as differently and lesser for some people, having the awareness of being the source of anguish for loved ones difficulties of communication and being listened to being constantly patronised having your capacity to make your own decisions and to be in charge of your life constantly questioned or disregarded having people speak for you or being treated as if you are invisible having people, sometimes including your parents or other loved ones, make substituted decisions for you without them putting first your wishes and personal and social wellbeing being treated as an object of pity being treated as a burden (of charity) having been institutionalised in the past or currently special schooling and separation from your peers, even in a mainstream school it being assumed that you are asexual and child-like in your needs and wants it being assumed that you have no or little quality of life and that this is a good reason for ending your life being treated as a potential menace or dangerous being treated as the source of risk that must always be managed and controlled being treated as if you are a contagion or disease being responded to by some individuals as if you are either a ‘holy innocent’ or embodying the ‘devil’ or punishment.8
If you are a girl or a woman with disability, you are even more at risk of being treated in these ways. Girls and women with disability are more likely to be portrayed as unattractive and asexual or being treated as hypersexual and uncontrollable.9 While violence against people with disability is a considerable problem with significant consequences, it is particularly a problem for girls and women with disability.10
OPA is undertaking a research project in partnership with Women with Disabilities Victoria and the Domestic Violence Resource Centre Victoria to make a much-needed contribution to the evidence relating to violence against women with disabilities. Findings will be used by the
8 After Wolf Wolfensberger, Mark Feigan, "Personal Notes From: 'Syracuse University, Training Institute for Human Service Planning, Leadership and Change Agentry' Event [Wolf Wolfensberger, Susan Thomas and Adam (Aj) Hilderbrand]; 'Social Advocacies on Behalf of Devalued and Disadvantaged People', Adelaide," (unpublished, 1992). 9 Carolyn Frohmader and Women with Disabilities Australia, "Submission to the National Inquiry into Equal Recognition before the Law and Legal Capacity for People with Disability," (Rosny Park, Tasmania: Women with Disabilities Australia, 2014), p. 7. 10 Janine Dillon, "Violence against People with Cognitive Impairments: Report from the Advocacy/Guardianship Program at the Office of the Public Advocate, Victoria," (Melbourne: Office of the Public Advocate, 2010).
13 February 2014 8 project to devise evidence-based strategies for legal, policy and service sector reform, with implications for social inclusion measures.11
OPA has also produced the Interagency guideline for addressing violence, neglect and abuse (IGUANA) for adoption by the service system. IGUANA can help ensure there are better responses to the continuing results of this devaluation and treatment in the lives of Victorians with disability in the form of violence, neglect and abuse.12
This historical exclusion and pervasive devaluation of people with disability or mental ill health, denying them their humanity and dignity, is being increasingly countered. This dehumanising tendency towards the social devaluation of people with disability is persistent however and still has a real effect, particularly upon those people with disability who have higher support needs, communication difficulties, significant cognitive impairment, or continuing behaviours of concern. As noted above, girls and women with disability are even more affected by these tendencies than are men.
OPA also recognises that much more needs to be done to develop measures that are culturally sensitive and appropriate for people from diverse backgrounds. OPA understands that Aboriginal and Torres Strait People with disability confront issues and are treated in ways that require additional and culturally appropriate responses. As well, the treatment of people from culturally and linguistically diverse backgrounds also requires additional consideration. We are very concerned about the social inclusion of people experiencing compounding disadvantage from the intersection of several aspects of their individual identity and background; for example, woman with disability from an aboriginal background.
While noting how the intersection of identity and background can result in heightened jeopardy for individuals belong to different groups, this submission particularly focuses on the situation of people currently accommodated in congregate-care facilities including group homes and Supported Residential Services (SRS). Similar concerns may also apply for some people with disability or mental ill health living for extended periods in their parent or another family carer’s home. These people with disability or mental ill health may have loving relationships in the home; but due to their high support needs, they still live mostly isolated lives. Their interactions with others may be largely functional and limited to their immediate family members or in-home paid staff. Some people with disability attending specialised services may spend large parts of the day travelling to a distant school or day placement. Their family members or carers may hold very low expectations for their opportunities in life, based on their continuing experience of discrimination, exclusion and inadequate support.
This focus of our submission is consistent with the Committee’s statement that it
recognises that people with a disability vary in their capacity to participate in the community and that different approaches are needed to enable the social inclusion of different individuals. OPA agrees that one-size-fits-all thinking for people with disability and mental ill health is not always appropriate, although broad social measures addressing the widespread disadvantage and exclusion of people can also be appropriate.
11 Women With Disabilities Victoria, Domestic Violence Resource Centre Victoria, and Office of the Public Advocate, "Voices against Violence: Assessing the Evidence on Violence against Women with Disabilities," (2012). Reports from this project will be available in the middle of 2014. 12 Office of the Public Advocate, Interagency Guideline for Addressing Violence, Neglect and Abuse (Iguana) (Carlton: Office of the Public Advocate, 2013).
13 February 2014 9 The Committee’s statement does draw attention to the issue of what the terms ‘capacity’, ‘participate’ and ‘community’ mean for people with higher support needs, such as people with a severe or profound intellectual disability or severe autism. The capacity of people with a cognitive impairment to express views and make decisions is an issue that needs a different response to that of people with a different disability.13
OPA notes that the ‘dominant’ service response to people with a significant cognitive impairment or other very high support needs is the staffed group home.14 There are now large numbers of people with disability living in group homes, and these accommodation services will increasingly focus on support for people with more severe intellectual disability. They are unable to make an informed decision about where and how they live because of their impaired decision-making capacity. It is critical that these group homes maximise the social inclusion of residents, otherwise group homes are merely a more dispersed form of institutionalisation.15
These environmental service provision issues have relevance for how we define these key terms — capacity, participation and community, as discussed in the next section — but also for how efforts to increase social inclusion proper take proper account of people’s individual disability, background and experience.
OPA’s position is that we need to ensure that the higher support needs and associated reduced ‘capacity’ of people with severe or profound intellectual disability or severe autism or other disability or mental ill health conditions is not used as a rationale for applying a diminished standard of social inclusion. What social inclusion looks like may vary for different people; however, it is not appropriate to pre-determine options or outcomes according to a person’s diagnosis, past behaviours or level of support. Rather, the person’s opportunities for participation and inclusion should vary according to their developing and changing aspirations, interests, inclinations and relationships.
OPA has another position of central importance to issues of capacity. This position differs from others on the role of substituted decision-making as a response to impaired legal capacity. OPA fully endorses and encourages the greater extension and availability of supported decision-making, as we discuss below. It is also OPA’s view that substituted decision-making in appropriate circumstances is a valid and necessary adjunct for supporting and enabling the legal personhood of the person subject to guardianship or administration.
The Convention contains a number of ‘dignity and equality’ provisions, which flow from Article 3(a):
Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons including the following equal-treatment-before-the-law provisions:
13 See, for example, Christine Bigby and Chris Fyffe, "An Overview of Issues in the Implementation of Individualised Funding" (paper presented at the Achieving their own lives: the implementation of individualised funding for people with intellectual disability, La Trobe University, Bundoora, 24 October 2008). 14 Tim Clement and Christine Bigby, Making Life Good in the Community: As Good as It Gets? An Overview of Methodology and a Synthesis of Findings and Recommendations (Melbourne: Victorian Government, Department of Human Services, 2008), p. 5. 15 After Jim Mansell, in Foreword to Tim Clement and Christine Bigby, Group Homes for People with Intellectual Disabilities: Encouraging Inclusion and Participation (Gateshead: Athenaeum Press, 2010).
13 February 2014 10 Article 5 (1) States Parties recognize that all persons are equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law.
Article 12 1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.
2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. 3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.
4. 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. 5. Subject to the provisions of this article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property…
The Victorian Charter of Human Rights and Responsibilities Act 2006 contains the following provisions in s. 8, Recognition and equality before the law:
(1) Every person has the right to recognition as a person before the law. (2) Every person has the right to enjoy his or her human rights without discrimination…
Some individuals and organisations rely upon these provisions to argue that substituted decision-making is always illegitimate and must be entirely replaced by supported decision- making practices.16 This view was firmly stated with some authority by the UN Committee on the Rights of Persons with Disabilities in its recent report.17
OPA’s position is that substituted decision-making performed as guardianship or administration, in accordance with the rule of law, is compliant with Article 12 of the UN convention. OPA believes that guardianship, properly done, is a positive use of state power that enhances the inclusion and legal personhood of the represented person. In Victoria, under s. 28 of the Guardianship and Administration Act, the guardian must act in the best interests of the person they are representing. To do this they must take account of a number of factors including the
16 See for example: Frohmader and Women with Disabilities Australia, "Submission to the National Inquiry into Equal Recognition before the Law and Legal Capacity for People with Disability," p.39. 17 Committee on the Rights of Persons with Disabilities, "Concluding Observations on the Initial Report of Australia, Adopted by the Committee at Its Tenth Session (2–13 September 2013)," (United Nations, 2013), p. 4.
13 February 2014 11 person’s wishes and the encouragement of the maximum amount of community participation for the person.18
It is mistaken to view lawful guardianship in every instance as drastic, unwarranted and coercive. While guardianship and administration can be abused, the function performed by these arrangements is to deliver access to the benefits available from the making of a decision that the represented person is unable to make directly because of their established incapacity. To prevent abuse and exploitation there need to be proper safeguards, which apply in Victoria. These safeguards, which are outlined in Article 12(4) of the Convention itself, include having the application for guardianship tested by a properly constituted tribunal. The guardianship or administration order must genuinely be the least restrictive alternative and a matter of absolute necessity. If these conditions are not satisfied then either autonomy or supported decision- making must apply.
While guardianship will continue to be of necessity for small numbers of people with disability, it is clear that the reach of effective supported decision-making needs to be greatly extended. Supported decision-making offers the opportunity for significant improvement in the social inclusion of people with significant cognitive impairments and mental ill health. The concept is a key recent human-rights development for people with significant cognitive impairments and mental ill health. More needs doing to put this concept into practice, as we discuss below.
3.1.2 Supported decision-making Supported decision-making occurs when people with cognitive impairments or mental ill health are assisted to make and implement their own decisions (rather than have others make those decisions for them). While the term itself does not appear in the Convention, it is central to it. As the United Nations Enable website explains:19
The Convention recognizes that some persons with disabilities require assistance to exercise [legal] capacity, so States must do what they can to support those individuals and introduce safeguards against abuse of that support. Support could take the form of one trusted person or a network of people; it might be necessary occasionally or all the time … Supported decision-making can take many forms.
A number of important supported decision-making developments have occurred in Australia recently as part of an impetus for change generated by the Convention.20 In 2012, the Victorian Law Reform Commission made some significant supported decision-making recommendations in its final report on Victoria's guardianship laws and practices.21 These recommendations, which OPA strongly supported and encouraged, included the recommendation that supported decision-making arrangements should be the subject of legislative recognition. Such arrangements would include both personal appointments of supporters and the appointment of supporters by the Victorian Civil and Administrative Tribunal. The appointment of decision- making supporters would obviate the need for putting substitute decision-makers in place.
18 Guardianship and Administration Act 1986, Reprint No. 5, Act No. 58/1986, (Incorporating amendments as at 1 January 2000). 19 United Nations, "Chapter Six: From Provisions to Practice: Implementing the Convention; Legal," (United Nations Enable). 20 Bernadette McSherry, "Legal Capacity under the Convention on the Rights of Persons with Disabilities," Journal of Law and Medicine 20, no. 1 (2012). 21 Victorian Law Reform Commission, "Guardianship Final Report," (Melbourne: Victorian Law Reform Commission, 2012).
13 February 2014 12 The Victorian Law Reform Commission in its Guardianship Final Report made the following recommendations:
Recommendation 32. A person should be able to appoint a personal supporter or financial supporter through a written "supported decision-making appointment" if they have the capacity to do so.
Recommendation 35. VCAT should be able to appoint a personal or financial supporter to assist a person …
Recommendation 64. VCAT should be able to appoint a co-decision maker to assist a person in need of decision-making support. The Commission also recommended that OPA should host a pilot volunteer supported decision-making program.22
The Victorian government is currently considering these recommendations in the context of its development of new guardianship and powers of attorney laws. Meanwhile, OPA is delighted to have established a pilot supported decision-making program, which has been part-funded by a grant from the Victoria Law Foundation. This novel project will connect isolated people who have cognitive impairment with volunteer supporters who will previously not have had contact with the participants and who will assist them in making significant decisions. OPA would like for this program, which offers significant social inclusion improvements in the lives of Victorians with significant cognitive impairments, to become a permanent volunteer program for the organisation (OPA already has over 700 volunteers in its current volunteer programs).
Other important supported decision-making developments in Victoria include the publication by OPA of two discussion papers on this topic in 2009 and 2010.23 The 2012 publication by the Department of Human Services of Supporting decision making: a guide to supporting people with a disability to make their own decisions was a very important development as it guides practice in state-funded disability services.24 In 2013, OPA hosted a forum on 'Supported decision-making: from theory to practice'. That well-attended forum considered important supported decision-making developments that have occurred, or are occurring, throughout Australia, including a completed pilot program in South Australia and current initiatives in New South Wales and the Australian Capital Territory. Information about these matters is contained on OPA's forum website.25
In another recent development, OPA's Manager of Policy and Education, John Chesterman, undertook a Churchill Fellowship in 2013 on the topic of adult protection. His final report recommended a range of alternatives to protective guardianship orders for at-risk adults, including supported decision-making arrangements.26
22 Recommendation 62. 23 Barbara Carter, "Supported Decision-Making: Background and Discussion Paper," (Melbourne: Office of the Public Advocate, 2009), John Chesterman, "Supported Decision-Making: Options for Legislative Recognition," (Melbourne: Office of the Public Advocate, 2010). 24 Disability Services, "Supported Decision Making: A Guide to Supporting People with a Disability to Making Their Own Decisions," (Melbourne: Disability Services Division, Victorian Government Department of Human Services, 2012). 25 Office of the Public Advocate, "Forums and Events: Supported Decision Making: From Theory to Practice," (http://www.publicadvocate.vic.gov.au/research/133/: 2013). 26 John Chesterman, "Responding to Violence, Abuse, Exploitation and Neglect: Improving Our Protection of at-Risk Adults: Report for the Winston Churchill Memorial Trust of Australia," (Carlton: Office of the Public Advocate, 2013).
13 February 2014 13 At the national level some important developments are also occurring. As Committee members will be aware, the Australian Law Reform Commission is currently undertaking a 'review of equal recognition before the law and legal capacity for people with disability'.27 Potential supported decision-making initiatives will likely be a key aspect of the Commission's work. In its recent report, the UN Committee on the Rights of Persons with Disabilities recommended that Australia:
uses effectively the current [Australian Law Reform Commission] inquiry process to take immediate steps to replace substitute decision-making with supported decision-making and provides a wide range of measures which respect the person’s autonomy, will and preferences and is in full conformity with article 12 of the Convention …28
OPA has collected a number of international resources on the topic of supported decision- making that it is very willing to share with the Committee.
RECOMMENDATION 1 The Victorian Government should adopt and, where appropriate, incorporate into new guardianship and powers of attorney legislation, the supported decision-making proposals made by the Victorian Law Reform Commission in its Guardianship Final Report.
RECOMMENDATION 2 The Victorian Government should monitor the effectiveness of the Office of the Public Advocate's supported decision-making trial, and undertake to consider provision of ongoing funding for this program should it prove to be beneficial to otherwise isolated people with cognitive impairments.
3.2 How should ‘social inclusion’ for Victorians with a disability be defined?
The term social inclusion is used extensively without a widely accepted definition.29 Social inclusion for Victorians with disability should mean that the Victorian government and its communities give effect to the human rights of Victorians with disability or mental ill health. This would mean people with disability or mental ill health having the unquestioned right to individual and social wellbeing via the everyday benefits and opportunities provided by public institutions, community resources and adequate income support or employment.
27 Australian Law Reform Commission, "Legal Barriers for People with Disability," (http://www.alrc.gov.au/inquiries/legal-barriers-people-disability: 2013). 28 Committee on the Rights of Persons with Disabilities, "Concluding Observations on the Initial Report of Australia, Adopted by the Committee at Its Tenth Session (2–13 September 2013)," para. 25. 29 Luke Buckmaster and Matthew Thomas, "Social Inclusion and Social Citizenship Towards a Truly Inclusive Society," (Social Policy Section, Parliamentary Library, Parliament of Australia, 2009), p. 5, Tim Clement and Christine Bigby, "Making Life Good in the Community: Is This as Good as It Gets?" ed. Victorian Government Department of Human Services (Victorian Government Department of Human Services, 2008).
13 February 2014 14 The Committee should make a finding of how social inclusion ought to be defined. OPA recommends the following definition
RECOMMENDATION 3 ‘Social inclusion’ should be defined to mean that all Victorians, including Victorians with disability, are respected and valued, and are encouraged, supported and able to take part fully in the life of our society.
3.3 What is the difference between the concepts of ‘social inclusion’ and ‘participation’ in the context of people with a disability?
Social inclusion is a currently popular term used to encapsulate the idea of achieving access, equity, rights and participation for different disadvantaged groups as called for by large-scale social movements since the Second World War. Emancipation, social justice and (social) citizenship are other terms that have been used with an overlapping meaning. Social activists have also used a succession of other terms to describe the specific human rights problem of the systematic exclusion of people with disability or mental ill health, and its solutions. The main terms used in Victoria to challenge this widespread treatment of people with disability and mental ill health include normalisation, integration and deinstitutionalisation.30
Social inclusion may be used with the sense of subsuming the idea of participation, whereas others may consider participation to be the stronger term. In OPA’s usage, inclusiveness is a high-order value that incorporates the ideal of empowering people with disability to contribute and participate in society. OPA is concerned that the terminology used must reflect a deep and clear understanding of what the problem is and what is required for redress, so that people with disability or mental ill health are treated with the dignity they are owed as human beings.
As indicated above, the concept of participation does need examination for its connection to the concept of economic participation and particularly paid work. These concepts in turn are connected to deep-rooted social concepts such as the idea of the ‘deserving poor’, more recently expressed as ‘mutual obligation’. What needs to be untangled for some people with disability is how the important concept of economic participation — giving back — applies to people with high levels of dependency, where so much positive social valuation is tied in our society to the performance of paid work.
Most people with disability will want to work, and many do, despite the significant access barriers to education, training and the workplace that they face. The poor participation rate in paid employment of people with disability or mental ill health is recognised as a major problem in Australia. We expect that the committee will receive many representations on the under representation of people with disability and mental ill health in paid employment as much needs to be done to redress this significant issue.
In keeping with OPA’s focus, we particularly want to focus on the participation of people with disability or mental ill health who are unable to participate in the paid workforce due to their high support needs. Some people have been supported in disability enterprises, formerly sheltered workshops, but this has not been a generally satisfactory situation for a variety of reasons including the low wages paid.
30 For an outline of these developments in Victoria see: Feigan, "The Victorian Office of the Public Advocate: A First History 1986 – 2007".
13 February 2014 15 The conflation of participation with paid employment in disability policy is long standing. This also occurred with the previously used concepts of normalisation and integration. Roger Trowbridge pointed out the inherent problems with this approach and its doom more than twenty-years ago.31 For people with high support needs, the issue is the selective view of participation so that employment or work-like activities are over emphasised to the exclusion of other life-affirming and meaning-giving alternatives.
OPA supports the reorientation of day services, which have traditionally catered to people with disability considered unable to participate in the labour market. Over the past few years, disability adult day services have moved away from the block treatment of people in groups to more personalised, social inclusion based practices through individualised funding approaches and other reforms. Participation in a service is not the same as participation in society, as has been recognised in the current policy settings.
As already noted, underneath the idea of participation are some multifaceted and foundational social ideals and practices. Participation is concerned with giving purpose and meaning to life, making a contributing to the social good, sharing experiences and community as well as developing and exercising knowledge and skills. When we talk about participation, we are really talking about the person’s life-world and everything that happens (or does not happen) in it.
In re-focusing attention upon social inclusion and participation, it is important that renewed attention be given to increasing the participation rate for people with disability and mental ill health in paid employment. It is also very important that this push not drive out other important efforts that are equally required for participation in other important and life-affirming aspects of the social world including the cultural, educational, sexual, social, recreational and spiritual domains. It is also important that when these other domains are given priority that it not be due to them having been reduced to being only a pathway to paid employment or its substitute. For example, the pursuit of education can be worthwhile for its own sake, as self-discovery and self-development, without it having to be directly connected to paid work. Education should not be substituted for by limited training and skills development in disconnected environments that do not actually lead to sustainable satisfying employment or other valued opportunities.
3.4 What does social inclusion for Victorians with a disability look like now? OPA has pointed out above the reasons why many Victorians with disability lead a precarious life. It is also true that Victoria has moved a long way towards the increased social inclusion of people with disability. OPA itself experienced significant change due to the deinstitutionalisation of disability services and mainstreaming of mental health services in the 1990s. Community Visitors have largely gone from visiting large wards and institutions to visiting much smaller facilities and houses. In a connected development, more beds in private Supported Residential Services became occupied by people with disability and mental ill health, which also needed visitation as an important safeguard and measure for advancing the quality of these services.32
OPA’s guardianship services are not provided to large numbers of people with intellectual disability as may have been thought when guardianship was being modernised in the 1980s.
31 Roger Trowbridge, "Disability and Productive Employment: A Prediction of Failure and a Proposal for Change," Australian Journal of Social Issues 28, no. 1 (1993). 32 Feigan, "The Victorian Office of the Public Advocate: A First History 1986 – 2007", Chapter Eight.
13 February 2014 16 The largest disability-type group to have an OPA guardian are older people with dementia. During 2012/13, 57 per cent of OPA’s guardianship matters were for people aged over 65 years of age. Approximately only one-quarter of new guardianship matters involved a person identified as having an intellectual disability. Very close to the same proportion of matters were for people with mental ill health. In Victoria, the most common issue in guardianship is an accommodation decision. In 2013, this was the issue in three-quarters of all cases. There were 781 new cases in total for that year.33 These are now long established patterns.
33 Office of the Public Advocate, "Office of the Public Advocate Annual Report 2012-13."
13 February 2014 17 4. Victorians with a disability and social inclusion
4.1 What are the barriers to meaningful social inclusion for Victorians with a disability?
There are discussions throughout this submission of some of the barriers to meaningful social inclusion. For this question, OPA is focussing on the continued segregation and congregation endured by people with disability so that they may access state funded supports.
OPA and its Community Visitors Program have had a longstanding involvement in the deinstitutionalisation of people with disability and mental ill health. This position was developed based on the experience of Community Visitors uncovering systemic abuse and neglect in Victoria’s institutions.
Community Visitors were horrified by what they found when they started visiting Caloola, one of Victoria’s large institutions for people with intellectual disability in Sunbury. They detailed the human rights abuses and wrongs routinely meted out to the hundreds of residents who lived there in their 1988 report, Violence at Caloola, leading to its closure in 1992.34
OPA held an event on 7 November 2013 in Preston, known as Caloola21, to commemorate Caloola’s closure, because of the importance of deinstitutionalisation to people with disability.35 During the proceedings people heard about the conditions at the institution discovered by the Community Visitors and what needs to be done in the future to promote the social inclusion of people with disability from a range of presenters.36
In his presentation at Caloola21, Professor Trevor Parmenter presented an overview of relevant research. He suggested that for people with intellectual disability, despite the commitment to deinstitutionalisation, ‘the spirit of that era remains pervasive’. This is because the ‘beliefs’ that led to ‘segregation live on in public policy; in the ways support services are provided, and in the denial of citizenship for people with intellectual disabilities’. He discussed how a review of empirical research by M.M. L. Verdonschot and others published in 2009 shows:
… on the level of active participation of people with intellectual disabilities in the community revealed some disturbing results: The average number of persons in their social network was 3.1; one of which was a paid support worker They are 3-4 times less employed than non-disabled peers They were less likely to be employed competitively and were more likely to work in sheltered workshops or segregated settings than those with other disabilities They were less likely to be involved in community groups Leisure activities were mostly solitary and passive in nature They were generally accompanied to an activity by support staff.37
34 Feigan, "The Victorian Office of the Public Advocate: A First History 1986 – 2007". 35 Mark Feigan, "Caloola21: Celebrating 21st Anniversary of Caloola Training Centre Closure," (2013). 36 A recording of the key presentations, produced by Helen Gwilliam of Radio Station 3CR, can be streamed or downloaded at: http://podcast.3cr.org.au/audio/3CRCast-2013-12-02-88486.mp3 Helen Gwilliam, "Disability Day 2013: Welcome to Our World- Shut Down, Caloola21," (3CR, 2013). 37 M. M. L. Verdonschot et al., "Community Participation of People with an Intellectual Disability: A Review of Empirical Findings," Journal of Intellectual Disability Research 53 (2009.).
13 February 2014 18 In considering inclusion as a process, Professor Parmenter then asked whether it might be the case that policies have been developed:
as a reaction to past practices such as institutionalization, rather than taking a more proactive approach which asks the question “what type of life would I want to live if I had a disability?
OPA shares his concern that the ‘true test’ of deinstitutionalisation is the lived experience of people with intellectual disability:
their acceptance as an integral part of the community … this acceptance and the opportunity to forge meaningful relationships with friends of their choosing is an essential contributor to their sense of well-being and a life of quality. Inclusion implies a sense of reciprocity and interdependence, rather than simply a physical community presence.
Other presentations at Caloola21 were concerned with what are the current intentions for Victoria’s remaining institutions and what are the barriers to appropriate services and meaningful inclusion for their residents.
OPA has advocated for the closure of Victoria’s remaining institutions through the publication of its position paper in 2013.38 OPA seeks the closure of all congregate-care facilities (institutions) in Victoria for people with a disability before 2015. These include Colanda Residential Services in Colac, Oakleigh Centre, and Plenty Residential Services in Bundoora. Our published position, which was discussed at Caloola21, also states that
The main approach will continue to be small group homes, although other more individualised options also need to be available. Group homes should have no more than six residents so they can properly meet the residents’ individual needs. Individuals must not be compelled to live in a particular setting to gain access to support, unless ordered by lawful authority. In meeting the individual’s needs, all accommodation support needs to be personalised, planned and flexible; provide the maximum autonomy and choice for the individual; enable the person to maintain and develop relationships; and minimise and address potential barriers to community participation.39
During her opening address for Caloola21, the Parliamentary Secretary for Families and Community Services, Andrea Coote, was able to confirm the closure of Sandhurst. She agreed that further attention to the future of Colanda and Plenty Residential Services was needed. She also noted how Colanda is located in the Barwon launch site of the National Disability Insurance Scheme (NDIS), and how there was an agreement with the Commonwealth governing the transition process to the NDIS.
Senior representatives of the Department of Human Services and the National Disability Insurance Agency spoke later in the proceedings. They agreed that the details of how people with high support needs currently living in (large) group homes will be transitioned and accommodated under the different approach to housing of the NDIS were not yet worked out.40 OPA’s recommendations addressing this overall situation are made below.
38 Office of the Public Advocate, "Position Statement: Congregate-Care Facilities (Institutions) for People with a Disability," (Carlton: Office of the Public Advocate, 2013). 39 Ibid. 40 The guest speakers in the panel discussion were: DHS Director, Service Development and Design, Angela Connors; and Director, Engagement NDIS, Launch Transition Agency, Alex Gunning.
13 February 2014 19 4.2 In what ways do Victorians with a disability participate in the economic, social and civil dimensions of society?
OPA makes no submission on this question beyond making these two simple observations: – In every way – In not enough ways.
4.3 What do you see as the emerging issues for Victorians with a disability over the next 20 years and how might these influence their social inclusion?
4.3.1 Institutionalisation Formal recognition of the terrible injustice associated with the institutionalisation of people with disability in state care facilities is long overdue. While there have been recent inquiries and responses into the past historical treatment of some other vulnerable groups there has not been a sufficient response or acknowledgment of the terrible treatment and conditions in Victoria’s institutions. In 1997, the State Coroner found that years of neglect by successive state governments had contributed to the death of nine men in a fire at Kew Cottages on the night of 8 April 1996.41 The terrible death of these men was only one of the awful outcomes of longstanding neglect of people with disability and mental ill health in our state institutions.42
This tragic history of violence, abuse and neglect has long been documented and recognised, but little has been done to redress the suffering and effects that still affect many people with disability and mental ill health. OPA is aware that some individuals have successfully sought recompense for the failure of the State to meet its duty of care to the residents of institutions. This issue became known at Caloola21 where participants called for individual and collective legal action to pursue this issue.43
It is important that in looking to the future that we as a society deal with our past in a way that promotes belonging and acknowledges hurt and suffering. It is also important that this history be properly remembered so that mistakes of the past are not repeated in the future. The role of activism by people with disability and their supporters in bringing about deinstitutionalisation also needs to be remembered and commemorated. Professor Parmenter noted at Caloola21 that he could not remember any other public celebration of the closure of an institution.
Victoria still has operating institutions at Bundoora, Colac and elsewhere. It is critically important that in the very first part of the next 20 years that these institutions are closed down. While this is important for the social inclusion of people with disability still living in those institutions, this has a critically important symbolic meaning too. Deinstitutionalisation became state policy in 1979.44 While we keep telling people with disability to wait for the availability of resources we are saying as a society that it is okay to socially exclude people on the basis of disability. Finally closing the institutions, remembering, celebrating, and offering restitution is a necessary step towards Victoria emerging into a new paradigm of social inclusion for all.
One possibility would be for the government to consult with OPA, the Equal Opportunity and Human Rights Commission, and organisations representing people with disability on how the
41 Gabrielle Costa and Sandra McKay, "Kew Inferno Kills 9," Age, 9 April 1996, Sushila Das, "State to Blame - Repeated Warnings Were Ignored," Age, 18 October 1997. 42 Kendall Hill and Sandra McKay, "Ignored in Life, Noticed in Death," Age, 13 April 1996. 43 Feigan, "Caloola21: Celebrating 21st Anniversary of Caloola Training Centre Closure." 44 Feigan, "The Victorian Office of the Public Advocate: A First History 1986 – 2007", p. 51.
13 February 2014 20 wrongs, suffering and harm brought about by institutionalisation of people with disability and mental ill health in Victoria may be best investigated and addressed.
A related practical step that the government could consider is to explore the establishment of a proper living memorial and archive that could provide a focus for efforts to collect memories, life histories, artefacts and historical documentation; marking the end of an era and honouring the experience of the people that survived those conditions. Establishing a disability and deinstitutionalisation archive and museum, in the right site and under appropriate auspices, could generate a range of direct and indirect social inclusion outcomes including community education on disability issues and jobs and training for people with disability.
RECOMMENDATION 4 The government, in liaison with the National Disability Insurance Agency, should develop and implement a plan for the closure of all remaining residential institutions for people with disability in Victoria.
4.3.2 Incarceration While institutions have been closed, there is real concern that this has been accompanied by an increase in the incarceration rate of people with disability and mental ill health. For example, initial research into the prevalence of traumatic brain injury in Victoria’s prisons suggests it is very high, affecting somewhere around half of the prison population.45
OPA is very concerned about this issue of over representation of people with disability or mental ill health and believes that our state’s prisons should not be allowed to become the new institution for people with disability in an era of social inclusion. The reasons for the over representation of people with disability and mental illness in our prisons indicate inadequate support of people with disability or mental ill health.46 This issue has been highlighted in the recently published Equal before the law report of the Australian Human Rights Commission.47
The consultation process of the Australian Human Rights Commission for this report found a number of serious deficiencies in the current situation:
Inability to access effective justice compounds disadvantages experienced by people with disabilities. Many people with disabilities are left without protection and at risk of ongoing violence. People with disabilities experience a relatively high risk of being jailed and are then likely to have repeated contact with the criminal justice system. Many offenders with disability have themselves been victims of violence and this had not been responded to appropriately, contributing to a cycle of offending.
45 Martin Jackson et al., "Acquired Brain Injury in the Victorian Prison System," in Corrections Research Papers Series (Melbourne: Department of Justice, 2011). 46 Magdalena McGuire, "Breaking the Cycle: Using Advocacy-Based Referrals to Assist People with Disabilities in the Criminal Justice System," (Carlton: Office of the Public Advocate, 2012). 47 Australian Human Rights Commission, "Equal before the Law: Towards Disability Justice Strategies," (Australian Human Rights Commission, 2014).
13 February 2014 21 There is widespread difficulty identifying disability and responding to it appropriately. Necessary supports and adjustments are not provided because the need is not recognised. When a person’s disability is identified, necessary modifications and supports are frequently not provided. People with disabilities are not being heard because of perceptions they are unreliable, not credible or incapable of being witnesses. Erroneous assessments are being made about the legal competence of people with disabilities. Styles of communication and questioning techniques used by police, lawyers, courts and custodial officers can confuse a person with disability. Appropriate diversionary measures are underutilised, not available or not effective due to lack of appropriate supports and services. People with disabilities are less likely to get bail and more likely to breach bail because they have not understood the bail conditions.48
This situation is intolerable for a civilised society based on the rule of law. Solutions to this set of issues must be better understood, but most importantly it needs to be acknowledged as one of our most serious problems that needs to be successfully tackled by government as a matter of urgency.
OPA supports the key recommendation of this report that
each jurisdiction in Australia should develop an holistic, over-arching response to these issues through a Disability Justice Strategy.
The Strategy should focus on the following outcomes:
1. Safety of people with disabilities and freedom from violence 2. Effective access to justice for people with disabilities 3. Non-discrimination 4. Respect for inherent dignity and individual autonomy including the freedom to make one’s own decisions 5. Full and effective participation and inclusion in the community These outcomes reflect the understanding that people with disabilities:
have the right to be heard and informed
should feel safe and be free from violence so that they can live in safety and with dignity
should be able to access the support, services and programs they need to prevent disadvantage and address a range of health and social risk factors
are able to easily identify and access appropriate high quality services if they experience violence, or feel they are unsafe and at risk of experiencing violence
48 Ibid., pp 5-6.
13 February 2014 22 are treated with dignity when they begin or defend criminal matters, or participate in criminal justice processes, and the legal system provides the modifications, supports and aids needed to participate
when lawfully deprived of their liberty are treated humanely and provided with supports, adjustments and aids needed to participate in prison life and transition successfully to the community.49
OPA also supports the following principles of the report:
Appropriate communications – Communication is essential to personal autonomy and decision-making. Securing effective and appropriate communication as a right should be the cornerstone of any Disability Justice Strategy. Early intervention and diversion – Early intervention and wherever possible diversion into appropriate programs can both enhance the lives of people with disabilities and support the interests of justice. Increased service capacity – Increased service capacity and support should be appropriately resourced. Effective training – Effective training should address the rights of people with disabilities and prevention of and appropriate responses to violence and abuse, including gender-based violence. Enhanced accountability and monitoring – People with disabilities, including children with disabilities, are consulted and actively involved as equal partners in the development, implementation and monitoring of policies, programs and legislation to improve access to justice.
Better policies and frameworks – Specific measures to address the intersection of disability and gender should be adopted in legislation, policies and programs to achieve appropriate understanding and responses by service providers.50
The thrust of these principles also have a general applicability for what needs to be done more broadly to promote the social inclusion of people with disability.
OPA has recently provided support for a submission process that involves an anonymous benefactor providing significant funds for projects to address this issue for people with an acquired brain injury. Social inclusion will require the government to do its part in reversing this situation so that people with disability and mental ill health get the services they need rather than costly, harmful and futile imprisonment.
RECOMMENDATION 5 The government should develop in consultation with relevant parties a holistic disability justice strategy that gives priority to evidence-based ways of quickly and sustainably reducing the number of people with disability incarcerated due to inadequate support for their disability needs.
49 Ibid., pp 6-7. 50 Ibid., p. 7.
13 February 2014 23 4.4 How effective have awareness campaigns been in improving social inclusion for people with a disability in Victoria?
OPA is not aware of any sustained well-resourced raising-awareness campaign by government. There have been a series of sporadic campaigns, commencing with the activities of more than 30 years ago for the International Day of Disabled Persons in 1981. The advertising to promote the NDIS by the Commonwealth was a more recent and short-term example of positive awareness raising. The launching of Disability State Plans has also been accompanied by small-scale campaigns promoting a positive image of disability.
The non-government sector also does some awareness-raising promotion. OPA refers the Committee to the ‘see the person, not the disability’ advertising conducted by Scope (Vic) Ltd a few years ago.51 Yooralla also does some advertising to promote a positive image of disability.
In the past, fund raising by charitable organisations has not always promoted a positive image of disability. Particularly before the 1990s, there was considerable emphasis on pity as a motivating force for charitable giving.
Through the advocacy of people with disability and their organisations, a lot of this negative imaging in popular media reporting and advertising has been significantly reduced but not eliminated. Some newspapers and other media outlets continue to use very negative stereotypes to demonise people with disability requiring specific behavioural support. Government can be uncertain of how to best respond to these harmful, unethical and fear- inspiring practices and will not usually publically challenge them.52
While these negative campaigns do sometimes erupt, there are positive developments too. Anti-discrimination measures and connected public campaigns around discriminatory practices have had an effect, but more needs doing. OPA itself does some awareness raising as a component of community education and advice services.
Unfortunately, a lot of awareness raising efforts, although coming from a positive motivation, still unnecessarily reinforces a distorted view of the social relations at issue. The problem is particularly evident in efforts to promote the paid employment of people with disability, with ties to the issues discussed above.
This issue can be seen more easily in the employment context. Disability employment services trying to assist and place people with disability and mental ill health into mainstream employment have to do a lot of marketing like activities to find employment opportunities. They have to counter the ‘myths and misconceptions’ of the still prevalent social attitudes discussed at the beginning of this submission and the consequent illegal discrimination of resistant employers. These marketing efforts often rely upon portraying people with disability and mental ill health as ‘deserving’, playing into negative historical stereotypes, rather than being entitled to access and equity on the basis of their humanity.
The big concern with this tendency towards promoting ‘deservingness’ over ‘entitlement’ in awareness raising, is that the focus of ‘reasonable adjustment’ is put upon people with disability, rather than the barriers and exclusionary practices of broader society. In its extreme form, people with disability are homogenised and portrayed as being more reliable, taking less sick days and as being more diligent than the average person, in an effort to make them more
51 Scope Victoria, "See the Person, Not the Disability," (YouTube: 2010). 52 See, for example, "Close Down Creep School," Herald Sun, 29 October 2013, Julian Gardner, "Young Offender Given Bad Rap," Herald Sun, 9 February 2004.
13 February 2014 24 acceptable to employers. This is done in reaction to the totalising historical portrayal of people with disability as being a burden and object of charity. Unfortunately and perversely, it ultimately reinforces these kinds of attitudes.53
Another expression of this underlying problem can be seen in past efforts to promote the inclusion of people with disability through the use of the term disAbled (sic). This term is supposed to highlight that people with disability have abilities and capacities, alongside their impairments and the restrictions that follow from these in interaction with their environment. The problem with this approach is the implicit requirement that people with disability are contrasted against ableist values. In this approach people are worthy to the extent that they are able- human-beings, rather than being worthy of decent treatment and entitled to human rights simply because they are human. It also subtly tells people with and without disability that having a DISability is not a source of pride or value, only being Able is valued.
This is a real problem, not just a theoretical or activist concern, because people downplay the quality of life of people with disability based on these ableist values, rather than the actual experience of life lived with disability.54 It leads to a lot of unnecessary shame and despair, which can be deadly for people with disability. As Sheila McLean and Laura Williamson have pointed out; how the fact found through research that people with disability report a high quality of life is repeatedly represented as a paradox shows how deeply entrenched the negative valuation of disability is in our society.55
For the long-term success of social inclusion, the unrelenting portrayal and understanding of disability as always being only a negative occurrence must be sensitively challenged. We need to have a more sophisticated understanding of how, for many people with disability or mental ill health, their condition is a big and defining part of them, and their experience of the good life, without it being the only thing about them as a person.
There still needs to be much demystification of disability and mental ill health, and having it tied to human rights rather than health. Most people with disability and mental ill health are required to be ambassadors for awareness raising whether they like it or not. Some people really like this and are great at it. They need to be at the centre of awareness raising campaigns.
RECOMMENDATION 6 The government should embark upon a well-conceived and sustained awareness-raising campaign that promotes the social inclusion of people with disability and mental ill health.
53 See for example this newspaper report from Canada: Justina Reichel, Hire People with Disabilities, Urges Tim Hortons Franchisee (1 January 2014 [cited 4 February 2014]); available from http://www.theepochtimes.com/n3/427998-hire-people-with-disabilities-urges-tim-hortons- franchisee/#?photo=2&_suid=139147437147809024716703787046. For a short video discussion of why this approach is misconceived see: Campbell, Discover: Ableism with Fiona Kumari Campbell. 54 See for example: Peter A. Ubel et al., "Do Nonpatients Underestimate the Quality of Life Associated with Chronic Health Conditions Because of a Focusing Illusion?" Medical Decision Making 21 (2001). 55 Sheila McLean and Laura Williamson, Impairment and Disability: Law and Ethics at the Beginning and End of Life (New York: Routledge, 2007), p. 99.
13 February 2014 25 4.5 How can social inclusion and the participation of people in the community be effectively measured?
While not being in a position to answer this question comprehensively, OPA believes that the take-up of supported decision-making arrangements can be one useful index for recognising the social inclusion of people with impaired decision-making capacity need who only need a little additional support.
Formal supported decision-making arrangements for people with disability are likely to focus on people who are socially isolated and lack the formal and informal supports they need to facilitate and build their decision-making capacity.
If people who are isolated and lacking supports are gaining access to these new arrangements, to help them make decisions about how they live, then this might suggest that the inclusion of formerly isolated people is being advanced.
It is likely that a whole range of proxy measures will need to be established through a properly resourced and implemented research plan. Because so much of the issues around inclusion are deeply connected with entrenched ableist values, it will be necessary to look for sustained and measurable attitudinal changes as well as other findings relating to participation rates and other behavioural measures.
The government could consider how it might work in partnership with universities and organisations that represent people with disability to develop robust indicators of meaningful social inclusion, that markedly improve upon basic participation rates that are of limited value for measuring real progress towards full social inclusion.
13 February 2014 26 5. Disability Act (2006)
5.1 To what extent have the inclusion and participation of Victorians with a disability been advanced following the introduction of the Disability Act 2006 (Vic)? & 5.2 What impact has the Disability Act 2006 (Vic) had on the social inclusion of people with a disability with respect to Victorian government services?
The Disability Act was an important reform that has continued the gradual reform process that has been implemented in Victoria since the 1970s. OPA welcomed the innovations such as the creation of the Disability Services Commissioner and the Senior Practitioner role. Another key strength of the Act was the bolstering of provisions relating to personalised services, with the three components of individualised planning, individual choice and individualised funding.
Some shortcomings arise from the limitation of important provisions to only applying to people with intellectual disability. While appreciating the historical development of these separate provisions and the particular importance of safeguards for people with intellectual disability there are serious problems with the continuing exclusion of people with other cognitive impairments from these same safeguards. The safeguards should apply based on established support needs arising from cognitive impairment, rather than a diagnosis of intellectual disability. For example, people with an acquired brain injury who could benefit from planning support and other assistance from the Department of Human Services are not entitled to the same support as people with an intellectual disability. Another limitation relates to the legal safeguards for compulsory treatment that apply only to people with an intellectual disability, rather than a cognitive impairment, despite the recommendation of the Victorian Law Reform Commission. These issues need to be rectified as they create serious difficulties for our community and some of its members.
Under Section 30 of the Act, one of the functions of the Community Visitors is to inquire into the adequacy of opportunities for inclusion and participation by residents in the community. OPA is aware of some good practice in group homes managed by both the Department of Human Services and community service organisations. Examples of this good practice are documented in their annual reports.56 There is however an issue, reported by the Community Visitors, around the capacity of the community service organisations in particular to manage their obligations under the Act. Last year, Community Visitors reported serious concerns affecting three large organisations. The Community Visitors have accepted that underfunding of the organisations for the services provided is a contributing factor and have called for an increase in the unit price paid to organisations.57
The Act extended the idea of individual planning in service delivery, which is a critical element of more personalised services. OPA is concerned that the quality of these plans and the realisation of them in practice is subject to a wide degree of variation. At their best, these individual support plans are part of a meaningfully process and are a living document that incorporates the person’s aspirations and works as an effective tool for ensuring that everyone is working towards the realisation and review of these personal goals. At the other extreme,
56 See for example, Community Visitors Disability Board, Community Visitors Residential Services Board, and Community Visitors Mental Health Board, "Community Visitors Annual Report 2012-13," (Carlton: Office of the Public Advocate, 2013), p. 22. 57 Ibid., p. 18.
13 February 2014 27 when this process does not work well, it might mean that last year’s plan is got out from the draw where it has sat for 12 months so the date can be changed. The variability largely depends on organisational capacity and the skills and attitudes of the staff working on developing and implementing the plan.
While there are still many improvements that can be made, Victoria actually has a lot of legislative and public policy tools to promote social inclusion, of which the Act is a key component. For example, the establishment of the Office of the Senior Practitioner has put into place clinical supervision and research necessary for properly regulating and improving the behavioural interventions routinely practiced in disability services. More regulatory and policy reforms are necessary, but what might be even more important for the social inclusion of people with disability is dedicating adequate resources and strong leadership to overseeing and improving the measures and tools that we already have.
RECOMMENDATION 7 The government should increase funding for all aspects of disability service delivery so that funded services, advocacy organisations and safeguarding bodies can meet the requirements of the Disability Act and the goals of the Victorian State Disability Plan.
RECOMMENDATION 8 The Parliament should consider amending the Disability Act so that its important safeguards and positive measures for people with an intellectual disability are extended to people with other forms of established and significant cognitive impairment.
6.1 How effective are services and initiatives designed to enhance the social inclusion of Victorians with a disability?
Further measures to promote the meaningful social inclusion of people with severe and profound intellectual disability in the community are necessary. This requires some experimentation, based on existing knowledge and best practice. OPA has limited knowledge of these services and initiatives and cannot make detailed comment on their effectiveness. One example of the kind of innovation that is needed that OPA is aware of is the Hanging Out Program that is supported by the Centre for Developmental Disabilities Health Victoria.58
6.2 What other sectors and sections of the community should have a greater role in improving the social inclusion of Victorians with a disability?
All sectors and sections of the Victorian community clearly have a role in promoting the social inclusion of people with disability. There will be a shifting combination of good will and resistance from different members and positions of the community. Unfortunately, people with disability cannot expect good will in every situation, requiring continuing and helpful responses
58 Sheridan Forster, Hanging out Program: Interaction for People at Risk of Isolation (Oakleigh: Sheridan Foster, 2008).
13 February 2014 28 from government including community education and anti-discrimination measures. These should not always depend on the making of individual complaints by the directly affected individuals with disability. The general encouragement of a human rights culture from the operation of the Victorian Charter of Human Rights is very gradually increasing the communities awareness of human rights issues but there is a long way to go. The Victorian Equal Opportunity and Human Rights Commission plays a key role to play in promoting this cultural and behavioural change.
6.3 Are there examples of good practice in advancing social inclusion and participation driven by local government and the community sector?
Due to its focus on eliminating abuse, neglect and exploitation, OPA has limited exposure to examples of good practice. OPA would like to acknowledge the critical role of community based organisations in providing advocacy for people with disability or mental ill health. These efforts by organisations such as AMIDA59, Australian Federation of Disability Organisations60, Disability Justice Advocacy61, Reinforce62, VALID63, Victorian Mental Illness Awareness Council64 and other organisations. These are also supported by the very important advocacy development work of the Disability Advocacy Resource Unit65, Disability Advocacy Network Australia66 and the Self Advocacy Resource Unit67.
OPA would also like to acknowledge the critically important work of universities and university- based researchers and teachers who are actively working to promote evidence-based understandings of the implications of social inclusion for people with disability. OPA has many useful collaborations on different projects, and relies upon the production and distribution of knowledge that universities foster and provide. One example of this important role of encouraging an informed awareness of the issues at stake, and having these connected to actual on-the-ground practice are the Roundtable discussions that have been principally organised and reported by Prof Chris Bigby of La Trobe University. These seminars have been influential in building a culture of research-based practice on social inclusion and intellectual disability related themes.68 This continuing seminar series provides an excellent example of the importance of linking knowledge and practice, which builds sector capacity. There are other examples of joined-up thinking and practice, which also connect to the point already made that much of what needs doing is already known, or in development.
59 See http://www.amida.org.au/ accessed 11 February 2014 60 See http://www.afdo.org.au/ accessed 11 February 2014 61 See http://www.justadvocacy.com/ accessed 11 February 2014 62 See http://www.reinforce.org.au/ accessed 11 February 2014 63 See http://www.valid.org.au/ accessed 11 February 2014 64 See http://www.vmiac.org.au/ accessed 11 February 2014 65 See http://www.daru.org.au/ accessed 11 February 2014 66 See http://www.dana.org.au/ accessed 11 February 2014 67 See http://www.saru.net.au/ accessed 11 February 2014 68 For Roundtable publications, see the staff profile page for Prof. Chris Bigby: http://www.latrobe.edu.au/health/about/staff/profile?uname=cbigby accessed 11 February 2014
13 February 2014 29 OPA would also like to acknowledge the very important community development and related work of Metro Access and Rural Access Project Officers in local communities. OPA hopes that this important work will continue to be given a high priority by local and state government.
7.1 What needs to happen in the implementation of the National Disability Insurance Scheme to improve the social inclusion of Victorians with a disability into the future?
The current expectation is that about 460,000 Australians will ultimately benefit from the NDIS that began operating in Barwon in Victoria and in other launch/pilot sites throughout Australia in July 2013.69 The NDIS offers the prospect of substantial improvements to the lives of eligible people with disability. One of the underpinning ideas behind the NDIS is that people with disabilities themselves are best placed to work out how money should be spent to support them.
Victoria has already enshrined this philosophy through the use of individual support packages for funding disability support. This is a critical element of the ‘contemporary approach’ to reforming the disability service system, one of the main goals of the Victorian State Disability Plan 2013-2016. An important strategy for achieving this goal is to 'maximise choice and control through self-directed supports'. 70
OPA believes the implementation of this philosophy will bring about substantial improvements to the lives of people with disability. At the same time, OPA is concerned about any potential detrimental impacts of the operation of this consumer-choice paradigm for people with significant cognitive impairments and mental ill health. As Prof. Parmenter pointed out at Caloola21:
The concepts of individual choice, self-determination and the right to live a life of one’s choosing have become accepted …The devil will be in the detail, however, as the roll out of the [NDIS] scheme will present particular challenges for people with intellectual disabilities and their families.71
OPA is monitoring this unfolding situation and is interested in the extent to which formal and informal supported and substitute decision-making processes are being utilised by or on behalf of NDIS participants with significant cognitive impairments and mental ill health.
OPA has advocated in the past for the NDIS Act and Rules to be drafted in such a way as to ensure that people are supported wherever possible to make and implement their own decisions. OPA is particularly interested in the operation of 'nominees' under the NDIS, who can be appointed to make spending decisions on behalf of participants. OPA has also advocated for, and is monitoring, the development of new national safeguarding and quality management processes under the NDIS. Developments in each of these areas are likely to impact on the ability of NDIS participants to realise meaningful social inclusion.
69 Peter Van Onselen and Mitch Fifield, "Transcript, Pvo News Hour with Peter Van Onselen, Sky News, 29 January 2014, 7:30pm," (2014). 70 See Goal Four and Outcome Ten, Department of Human Services, "Victorian State Disability Plan 2013–2016," pp 20-21. 71 Trevor Parmenter, "Theme of Address" (paper presented at the Caloola21: reuniting for the 21st anniversary of Caloola’s closure, Preston, September 2013).
13 February 2014 30 One challenge that the consumer-choice paradigm introduces is the creation of new relationships between service providers and participants that differ from relationships under earlier 'block-funded’ models of service delivery. While many positive outcomes are anticipated to come about because of this change, there are also potential dangers. The onus is now entirely upon the person with a disability or mental ill health, with or without the support or intervention of a nominee, to correctly identify their aspirations and needs through a planning process at the initiation of support.
At least two undesirable outcomes may eventuate for some people with significant cognitive impairments and mental ill health as they attempt, in this new context, to identify the services and responses that they need to purchase to deliver them a life where their aspirations are realised and their needs met.
If they have had to struggle for services, and have been able to exercise very limited choice over their options in the past, they may simply feel that the safest course is to purchase the already familiar services that have previously been receiving. Even though they may not be happy with the current service they may feel that the effort of making changes is not worth the risk of moving to an unknown service that may actually end up being worse that their current provider. Alternatively, the person may become even more socially isolated when they 'buy in' very specific services for what they consider their pressing and continuing disability-related needs, without them having the real opportunity to consider how they will live a life connected to the outside world.
It is also expected that there will be a significant rise in the number of for-profit disability service providers. These new entrants may not have the same philosophical commitment to social inclusion as existing not-for-profit providers. Moreover, as Daniel Leighton from Inclusion Melbourne has argued, the new focus on payment for the delivery of particular services to individuals may indirectly influence the social capital potential of service providers. For instance, some service providers have historically attracted significant numbers of volunteers whose involvement in the lives of people with disabilities significantly improves their level of social inclusion. Such arrangements may be jeopardised by new funding models, which may not enable service providers to resource such initiatives.72
In each case, the onus rests upon the person, potentially with the support or decision of a nominee, to make a good choice that maximises social inclusion, and the support that they receive through the planning process. The National Disability Insurance Agency staff will need to provide considerable support to people with a significant cognitive impairment or mental ill health to think about all aspects of their life and in providing information about services being offered, in an expanding market. It will be necessary to identify any what pitfalls of this approach so that they may be quickly remedied, rather than leaving it to market forces which will inevitably result in further harm to people living already precarious lives.
RECOMMENDATION 9 The Victorian government should monitor, evaluate and address the effect that the consumer choice philosophy, which is central to the operation of the National Disability Insurance Scheme and recent state disability funding reforms, is having on the social inclusion of Victorians with significant cognitive impairment or mental ill health.
72 National Disability Services Victoria, "Ndis Ready, Capacity Building for an Ndis, Case Study: Making Individual Costing Work," in NDIS Update (Parkville: National Disability Services Victoria, 2012).
13 February 2014 31 7.2 What should be the role of governments and the community sector in increasing social inclusion for Victorians with a disability?
7.3 In what way could collaboration between government departments, organisations, services and the community sector be improved to enhance social inclusion for people with a disability?
A key role of the Victorian government is to work collaboratively in genuine partnership with the community sector. This need has been identified in the recent project independently headed by Prof. Peter Shergold. This project has produced “A roadmap for community and human services reform” that can establish a sustainable base for social inclusion efforts.73 The government should consider how it may develop a planned approach to implementing the recommendations of the Shergold Service Sector Reform Report.
73 Peter Shergold, "Final Report, Service Sector Reform: A Roadmap for Community and Human Services Reform," (Melbourne: Victorian Council of Social Services, 2013).
13 February 2014 32 6. Looking to the future
8.1 What needs to happen to improve the social inclusion of Victorians with a disability into the future?
The government needs to develop an overarching framework to bring about the vision of an inclusive state in which every member is supported and able to take part fully in the life of our society. It is critically important that we resolve what measures are necessary as Victoria grapples with becoming a post-manufacturing economy. With a likely increased emphasis on highly skilled and knowledge-based jobs, the prospects for people with significant intellectual impairment or mental ill health in paid employment might seem even more challenging.
What we can do at this turning point for Victoria is reconsider our past approaches and build effective human service systems that promote inclusion in all realms, including the economy.
For people with disability this largely means looking at how the UN Convention on the Rights of Persons with Disabilities can be fully implemented in Victoria during the lifetime of most Victorians living with disability.
13 February 2014 33 7. References
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