Independent Advocacy and the NDIS (A paper to consider the role of Independent Advocacy when there is a National Disability Insurance Scheme) 30 June 2012 For further information please contact: Andrea Simmons Chief Executive Officer Disability Advocacy Network Australia (DANA) Ltd Telephone: (02) 6154 1983 Email: Andrea.Simmons@dana.org.au Copyright © 2012 Disability Advocacy Network Australia (DANA) Ltd [1] Table of Contents Introduction ................................................................................................................................ 3 Policy Context .............................................................................................................................. 3 United Nations Convention on the Rights of Persons with Disabilities ............................................... 3 National Disability Advocacy Program ............................................................................................... 3 National Disability Strategy ................................................................................................................ 4 Productivity Commission Inquiry Report into Disability Care and Support ........................................ 5 Historical Context .............................................................................................................................. 7 National Disability Agreement ........................................................................................................... 8 Definitions of Advocacy ............................................................................................................... 9 What is the Significance of Independence? ................................................................................. 10 Why is Independent Advocacy Support Necessary ..................................................................... 11 What do Independent Advocacy Agencies do? ........................................................................... 12 Self Advocacy, Family Advocacy and Citizen Advocacy ................................................................... 13 Legal Advocacy ............................................................................................................................... 13 Individual Advocacy ........................................................................................................................ 13 Systemic Advocacy ......................................................................................................................... 14 How will Advocacy for Individuals change with an NDIS ............................................................. 15 What about Advocacy for Individuals will remain the same with an NDIS? .................................. 16 How will an NDIS affect Systemic Advocacy? .............................................................................. 18 Disability Support Organisations and Advocacy ......................................................................... 19 Future Advocacy Administration and Funding ............................................................................ 22 [2] Introduction The following paper describes the disability policy framework in Australia and the role of independent advocacy within this framework. It goes on to describe the way in which the framework is likely to change with the introduction of the National Disability Insurance Scheme (NDIS) and the way in which an expanded independent disability advocacy program will assist the Government to meet its overall disability policy objectives. In essence this paper identifies that government policy is directed to meeting Australia’s international obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and to ensuring that people with disabilities are able to fulfil their potential as equal citizens. It shows that ready access by people with disabilities to independent advocacy support is a necessary system element for achieving these policy objectives because it supports people with disabilities to act, directly or through an advocate, in their own interests from a position of increased power and knowledge. It also operates as a protective mechanism in the lives of those people with disabilities who face the most significant barriers to effectively communicating their needs and wishes and it acts as an overall societal safeguard illuminating and seeking improvement in those aspects of our services, systems and society that are failing people with disabilities. Key to enabling independent advocacy to effectively fulfil its intended purpose of promoting, protecting and defending the rights, interests and well being of people with disabilities is to create a system structure that entrenches the independence and freedom from conflicts of interest of disability advocacy at program, governance and operational levels. Policy Context United Nations Convention on the Rights of Persons with Disabilities (CRPD) In July 2008 the Australian Government ratified the CRPD. The CRPD binds States parties to ‘ensure and promote the full realisation of all human rights and fundamental freedoms for all persons with disabilities.’ To this end States Parties undertake, amongst other things, ‘(a) to adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognised in the present Convention...’ and ‘(c) to take into account the protection and promotion of the human rights of persons with disabilities in all policies and programmes...’1 National Disability Advocacy Program (NDAP) The funding of agencies to deliver advocacy support for people with disabilities is a measure taken by Australian Governments to assist in the promotion, protection and implementation of the rights recognised in the CRPD. The objective of NDAP is that ‘People with disability have access to effective 1 United Nations, Convention on the Rights of Persons with Disabilities (CRPD), 2006, Article 4 [3] disability advocacy that promotes, protects and ensures their full and equal enjoyment of all human rights enabling full community participation...’2 NDAP provides advocacy support through a variety of models aimed either at assisting people with disabilities to assert their individual rights and interests or at achieving long term improvements in the rights and interests of people with disabilities collectively.3 The latter model is referred to as systemic advocacy. When acting systemically and on behalf of people with disabilities, advocacy agencies are regarded by the United Nations for the purposes of Article 4 paragraph 3 of the CRPD as representative organisations for people with disabilities.4 As such, advocacy organisations have an important role to play in the development and implementation of legislation and policies to implement the CRPD.5 National Disability Strategy (NDS) A key measure taken by the Australian Governments in 2011 for the implementation of the CRPD rights is the NDS. The NDS ‘will help ensure that the principles underpinning the Convention are incorporated into the policies and programs affecting people with disability, their families and carers…’6 The NDS lays out a vision shared by all the then Australian Governments for ‘an inclusive Australian Society that enables people with disability to fulfil their potential as equal citizens…..’7 The NDS drew on the findings of the ‘Shut Out’ report, the report of a Consultation conducted by the National People with Disabilities and Carer Council in 2008-09.8 This report indicated that issues of rights and discrimination were raised in 39 per cent of submissions, that people with disabilities reported experiencing discrimination in every aspect of their lives,9 and that 31 per cent of submissions contended that action is required to ensure greater protection of rights.10 The suggested actions to be taken included ‘increasing the number of and funding for advocacy services for people with disabilities’, allowing advocacy groups to bring cases to the Human Rights 2 Australian Government Department of Families, Housing, Community Services and Indigenous Affairs, National Disability Advocacy Program – Program Guidelines, Part C Services and Support for People with Disability Program: Application Information for National Disability Advocacy Program, 2010, p. 5 3 Australian Government Department of Families, Housing, Community Services and Indigenous Affairs, NDAP – Program Guidelines Part C, 2010, p. 17 4 This is confirmed by the United Nations Development Group / Inter-agency Support Group for the CRPD Task Team, Including the rights of persons with disabilities in United Nations programming at country level, A Guidance Note for United Nations Country Teams and Implementing Partners, 2010, which says at p.6 that that Governments should enhance participation of people with disabilities and their representative organisations by involving ‘organisations that represent men, women and children with all types of disabilities , including groups representing people with a single impairment, advocacy groups as well as umbrella organisations and those in remote and rural areas, so as to ensure that consultations are representative.’ 5 United Nations, CRPD, 2006, article 4, paragraph 3 6 Council of Australian Governments, National Disability Strategy 2010-2020, Commonwealth of Australia, 2011, p. 9 and p.16 7 Council of Australian Governments, 2011, p. 8 8 National People with Disabilities and Carer Council, Shut Out: The experience of people with disabilities and their families in Australia – National Disability Strategy Consultation Report, Commonwealth of Australia , 2009 9 National People with Disabilities and Carer Council, 2009, p. 14 10 National People with Disabilities and Carer Council, 2009, p. 17 [4] Commission on behalf of groups of individuals and enlisting advocates to ensure the effectiveness of person centred approaches and appropriate outcomes for people with disabilities.11 It is not surprising, then, that the NDS highlighted the role of disability advocacy in enabling and supporting people with disabilities, on both an individual and systemic level, to safeguard their rights and overcome barriers that impact on their ability to participate in the community.12 The NDS has six broad outcome areas. Outcome 2, under the heading of ‘Rights protection, justice and legislation,’ reads ‘people with disability have their rights promoted, upheld and protected.’ The NDS, in respect of this outcome area considers policy directions and actions that ‘seek to promote awareness and understanding of the rights of people with disability, improve responses to people with disability in the justice system, ensure their safety and enable them to participate fully in the economic, civil and social life of our nation.’13 Disability advocacy agencies are identified by the NDS as forming part of the Government’s commitment to achieving this Outcome.14 Support for independent advocacy to protect the rights of people with disability is also identified as an area of future action.15 Senator McLucas, in her ‘Parliamentary Secretary Foreword’ to the recently released Quality Toolkit for the National Disability Advocacy Program said: ‘A well administered, quality assured, disability advocacy sector will be crucial to support Australia’s human rights framework and the achievement of broader disability reforms outlined in the National Disability Agreement, the National Disability Strategy, the United Nations Convention on the Rights of Persons with Disabilities and a National Disability Insurance Scheme.’16 Productivity Commission Inquiry Report into Disability Care and Support Outcome area 4 of the NDS focuses on people with disabilities, their families and carers having access to the specialised supports they need to live independently and actively engage in their communities.17 The areas for future action include considering ‘new approaches to long term disability care and support, including responses to the Productivity Commission Inquiry’.18 The Productivity Commission Inquiry Report into Disability Care and Support was released on 10 August 2011. In undertaking its Inquiry the Productivity Commission considered many submissions that addressed the issue of advocacy support for people with disabilities and directly questioned DANA about matters arising from these submissions.19 It made a number of strong statements in support of the role and value of individual and systemic advocacy in the context of the proposed National Disability Insurance Scheme (NDIS). The Commission said: 11 National People with Disabilities and Carer Council, 2009, p. 17 Council of Australian Governments, 2011, p. 8 13 Council of Australian Governments, 2011, p. 36 14 Council of Australian Governments, 2011, p. 40 15 Council of Australian Governments, 2011, p. 41 16 Australian Government Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA), Quality Toolkit for the National Disability Advocacy Program, 2012 17 Council of Australian Governments, 2011, p. 47 18 Council of Australian Governments, 2011, p. 52 19 Productivity Commission, Draft Report on Disability Care and Support, Transcript of proceedings at Perth on Wednesday, 20 April 2011, at 8:54 am, pp. 930-933 12 [5] ‘Both independent advocacy and systemic advocacy will continue to play an important role under the proposed NDIS. The independence of individual advocacy organisations will allow them to represent the interests of the most vulnerable people in the disability system, whose concerns may be otherwise overlooked...... Part of this role will entail helping people express concern or make a complaint about the quality of service provision, either to service providers themselves, or to local area coordinators as well as the NDIA [National Disability Insurance Agency] directly. Beyond this, individual advocacy will also play an important role in ensuring that the assessment processes properly recognise people’s needs, as well as providing a safeguard with DSOs [Disability Support Organisations] and local area co-ordinators [LACs]. Similarly, systemic advocacy will play an important role in promoting system wide quality of service provision through: uncovering system failures; petitioning for widespread change; disseminating information of best practice to service providers; promoting public awareness of disability issues; and promoting the interests of particular groups such as CALD, indigenous and women with a disability.’20 The Productivity Commission went on to say that: the key feature of good advocacy is that no interest is countenanced other than that of the person themselves21 individual advocacy is integrally linked to systemic and other forms of advocacy22 neither systemic, nor individual advocacy are well suited to a user pays system so independent advocacy should continue to be block funded23 organisations funded to provide advocacy, in order to avoid any conflict of interest, should not also be funded through the NDIS, as DSO’s or service providers, or directly by the NDIA at all24 the NDIA should not directly fund advocacy support however there may be merit in the NDIA contributing additional untied funds to the existing advocacy programs25 It then recommended in Recommendation 10.4 that: ‘The Australian Government, through the Department of Families, Housing, Community Services and Indigenous Affairs should continue to provide funding for general advocacy by non-government organisations, with no involvement by the National Disability Insurance Agency in this funding role. State and territory funding of disability advocacy groups should continue.’26 DANA is of the view that the Productivity Commission has taken a good first step in the direction of understanding the role and function of independent advocacy when there is an NDIS. Importantly it has identified clearly that advocacy is not suited to a user pays model and that independence from service provision and the NDIA (and by analogy the National Injury Insurance Scheme [NIIS]) is a key design consideration for the reformed system. With this in mind, but without consideration or analysis of the relative merits of possible independent alternatives, the Productivity Commission appears to have opted for a no change scenario in relation to the administration and funding of advocacy. Perhaps the Productivity 20 Productivity Commission 2011, Disability Care and Support, Report no.54, Canberra, pp. 507-508 Productivity Commission 2011, p. 524 22 Productivity Commission 2011, p. 524 23 Productivity Commission 2011, p. 524 24 Productivity Commission 2011, p. 525 25 Productivity Commission 2011, p. 525 26 Productivity Commission 2011, p. 525 21 [6] Commission viewed such an analysis as too far removed from the work of designing an NDIS. Alternatively it may have considered it not possible to decide on the most appropriately independent administrative mechanism for independent advocacy until the administrative framework for the NDIS and NIIS is settled. Either way there is clearly a case for a more detailed consideration of this issue. In addition to the continuation of funding for independent advocacy organisations, the Productivity Commission in its Inquiry Report recommended that the NDIA have its own LACs and fund DSOs. Some of the functions envisaged for these roles seem, at first glance to have similarities to, or overlap with each other and with those of advocacy agencies. On closer investigation, however, it can be seen that where the functions are similar, they are performed in each role in different ways, to different degrees, applying different skills and responding to a different set of accountabilities. This is discussed later in this paper. LACs are intended by the Productivity Commission to: provide a local/regional point of contact and advice for people with disabilities in their dealings with the NDIS, oversight the delivery of their services and collect service performance information liaise with other government services on behalf of people with disabilities assess the capacity of a person to use self-directed funding, and assist in the development of spending plans manage a limited pool of funding to address emergency respite and other special circumstances negotiate, if requested, with service providers in the event of a dispute or complaint27 DSOs are envisaged by the Productivity Commission as being available to people eligible for Tier 3 individualised supports to: provide personal planning services beyond what is available from the LAC help them to get the best value from their allocated self-directed funding help them develop the skills and confidence to practically exercise choice provide them with information about the available support services assemble ‘packages’ of supports from specialist and mainstream providers undertake administrative tasks associated with their self directed funding28 facilitate community capacity building29 assist in resolving minor service issues and providing information about complaints processes and advocacy organisations30 Historical Context So far this paper has sought to contextualise advocacy within the human rights framework adopted though ratification of the CRPD. It is important to understand, however, that today’s advocacy has a long history and draws from a range of ideological movements and societal influences31: 27 Productivity Commission 2011, Productivity Commission 2011, 29 Productivity Commission 2011, 30 Productivity Commission 2011, 28 p. 413 p. 416 p. 417 p. 421 [7] the Judeo/Christian teachings directed to safeguarding and protecting those in need32 the Hegelian/Marxist promotion of equity and egalitarianism societal recognition of the self serving characteristics of human organisations and their tendency towards ‘decay, mediocrity and worse...’33 the 1940’s and 50’s parent rejection of institutional living for their sons and daughters with disability34 the articulation of some influential principles within human services35 the self help movement’s focus on skill development to enable independence, control and inclusion36 The National Disability Advocacy Program (NDAP) was ‘established after the introduction of the Disability Services Act 1986 with a mandate to provide advocacy services independent of direct service provision that would protect and promote the rights of people with disabilities. The program is an integral part of the rights protection framework which includes the Disability Discrimination Act 1992 as well as bodies such as the Human Rights and Equal Opportunity Commission, Offices of Legal Aid, the various offices of Public Advocate/Public Guardian and Ombudsman Offices....’37 At the time advocacy was regarded by the Federal Government as being needed to assist the significant process of change being embarked upon through the Disability Services Act, and as recognition that the life experience of people with disabilities was commonly associated with oppression, discrimination and disadvantage. 38 National Disability Agreement (NDA) Advocacy for people with disabilities today is funded and administered, jointly by the Commonwealth and the States under the NDA, as a specialist disability service. For NDA purposes a specialist disability service is probably one which falls in the category of services described in Item 8 of the NDA agreed outputs as follows: ‘(a) services that provide skills and supports to people with disability to enable them to live as independently as possible; (b) services that assist people with disability to live in stable and sustainable living arrangements;............and (d) services that assist families and carers in their caring role.’39 31 W Wolfensberger, A Balanced Multi-component Advocacy /Protection Schema, Association Resources Division Canadian Association for the Mentally Retarded, 1977, pp. 3-6 32 For example see Proverbs 31:8-9 ‘Speak up for those who cannot speak for themselves, for the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy.’ 33 Wolf Wolfensberger, 1977, p. 4 34 E Cocks & G Duffy, The Nature and Purpose of Advocacy for People with Disabilities, Centre for the Development of Human Resources, Social Research and Development Monograph No.4, 1993, p. 39 35 E Cocks & G Duffy, 1993, p. 40 provides as examples Normalisation, The Least Restrictive Alternative, The Dignity of Risk, The Developmental Principle/Model and Social Role Valorisation. 36 E Cocks & G Duffy, 1993, pp. 40-41 37 Social Options Australia; Evaluation of the National Disability Advocacy Program Final Report; FaHCSIA, 2006, p. 10 38 J Cross & L Zeni, Safeguarding Advocacy for People with Disabilities in Australia , A report to the Disability Advisory Council of Australia, 1993, p. 14 39 Council of Australian Governments (COAG), National Disability Agreement, 2009, p. 4 [8] There can be little doubt that independent advocacy agencies fall within the descriptions at a), b) and d) above and are regarded by people with disabilities as a necessary specialist disability support. As part of the NDA, all governments: ‘agreed to create a service system which enhances the social and economic participation for people with disability and supports their families and carers. The agreed policy directions to achieve this are to: (a) improve provision of the skills and opportunities to enhance the capability of people with disability to participate in social, economic and community activities; (b) ensure services are person centred and provide timely access to supports based on assessed needs; (c) identify, plan and respond to the development and support needs of people with disability at an early stage and at key life transition points; and (d) support the role of families and carers including strengthening their informal support networks.’40 The work of advocacy organisations funded under the NDA make a significantly contribution to the governments’ implementation of each of these policy directions. This will be addressed in more detail later in this paper. Under the NDA the various governments have agreed to ‘consider improvements in administration of advocacy services, with a focus on improving service delivery and access to advocacy services for people with disability.’41 Definitions of Advocacy The term ‘Advocacy’ is derived from the Latin verb vocare, which means ‘to call or speak’. When joined with the prefix ad, it becomes ‘to speak on behalf of or in favour of’42. English language dictionaries commonly define advocacy in terms similar to the following: ‘The act of pleading or arguing in favour of something, such as a cause, idea, or policy; active support.’43 The definition of advocacy used by NDAP throughout the life of the Program has been something like: ‘In broad terms, advocacy for people with disability can be defined as speaking, acting or writing with no conflict of interest on behalf of the interests of a person or group, in order to promote, protect and defend the welfare of and justice for either the person or group by: being on their side and noone else’s; being primarily concerned with their fundamental needs; and remaining loyal and accountable to them in a way which is empathetic and vigorous.’ 44 The DANA definition of advocacy, below, has been derived taking all of the above into account. 40 Council of Australian Governments, 2009, p. 8 Council of Australian Governments, 2009, p. 9 42 M Kendrick, Advocacy as Social Leadership, The International Journal of Leadership in Public Services, vol. 4 issue, October 2008, p. 63 43 The American Heritage®, Dictionary of the English Language, 4th edn, Houghton Mifflin Company, 2009, viewed 30 June 2012, http://www.thefreedictionary.com/advocacy 44 Australian Government Department of Families, Housing, Community Services and Indigenous Affairs, NDAP –Program Guidelines Part C, 2010, p. 9 41 [9] We have also defined what we mean by independent so that a reference in our paper to independent advocacy will be distinguishable from the incidental advocacy support provided by services as an adjunct to or offshoot from their general service provision. ‘Advocacy’ is taking action to promote, protect or defend the rights, interests or well-being of a person or group.45 ‘Independent’ means freedom from influence by agencies or government entities with responsibility for the provision of supports and services to people with disabilities. (Consistent with the Productivity Commission view detailed above) What is the Significance of Independence? Disability advocates are compromised in their capacity to effectively advocate for people with disabilities if they, at the same time, have interests to serve that are in conflict with those of people with disabilities. This is because the more powerful interests of service providers and government agencies usually prevail. Service provider interests will conflict with those of people with disabilities whenever a service is to be the object of advocacy because: service providers have similar interests to each other and so are constrained in their advocacy against other services for things that may apply equally to them; and service providers need good working relationships with other services to carry out their work effectively and so are constrained in the strength of their advocacy against other services. Service provider interests will conflict with those of people with disabilities whenever the NDIA or NIIS is the object of advocacy because services will rely on the goodwill of these government agencies for their block (Tier 2) funding, for their eligibility to receive individualised funding and for LAC or NIIS equivalent recommendations to people with disabilities. DSOs are proposed to perform many important services for people with disabilities including planning, brokering, administering and managing and will receive both block and individualised funding. They will therefore be subject to the same conflicts of interest identified above for services. The NDIA and NIIS will be conflicted in also providing or funding advocacy for people with disabilities whenever a decision, policy or process of the NDIA or NIIS is called into question and when the service provider subject to advocacy is one that they have promoted to people with disabilities, directly funded or quality approved. Disability advocates thus seek structural arrangements for advocacy provision that avoid these conflicts occurring and allow them to advocate solely in the interests of people with disabilities. The structural arrangements that have long been thought of as important involve: 45 Lobbying is generally understood to be a form of advocacy directed to influencing the actions of the members of a legislative body. [10] ensuring that the agencies that deliver advocacy support do not also provide disability services; and ensuring that advocacy agencies are funded and administered by a part of government that is unlikely to be subject to disability advocacy. Why is Independent Advocacy Support Necessary? Australian Governments fund services and supports for people with disabilities to enable them to achieve economic and social participation and to enjoy choice, well-being and the opportunity to live as independently as possible.46 The capacity to take action, to effectively promote, protect and defend your rights and interests is a necessary enabler for each of these goals. It is necessary for things as simple as remedying an overcharge on a phone bill and for things as complicated and emotionally challenging as taking action to address or prevent a situation of abuse. Our systems of redress for wrongs done to people take for granted that those affected will have the personal and fiscal resources to take up the issue with the relevant person or body and, if necessary, to push it through a plethora of complaints mechanisms to a successful conclusion, engaging with suitable professional support as needed along the way. If someone does not have the personal resources to do this and does not have family or friends able to take on the role, then independent advocacy support is required. When the issue concerned is complicated, intractable or challenging, advocacy support from someone knowledgeable about advocacy and about the subject matter is required. If it is not readily available then only the most skilled, knowledgeable and empowered or well supported (by families or friends) people with disabilities will have their issues addressed. People with disabilities are more likely than the rest of the population to be in a poor position to advocate for themselves, more likely to lack family advocacy support and more likely to face complicated, challenging or intractable challenges to their rights and well-being. This situation arises from the interaction people’s disabilities with their environment and societal factors. It is particularly the case for those who are reliant on the services of others for their most basic needs;47 those who lack effective communication, negotiation or comprehension skills and those who lack knowledge about their rights and how to exercise them. For these same reasons people with disabilities are more likely than the rest of the population to experience abuse, neglect, injustice and a denial of their basic human rights and fundamental freedoms.48 This is a universal phenomenon and was part of the driver for the development of the UNCRPD. The international community recognised that, despite broad acceptance of the general 46 Council of Australian Governments, 2009, p. 4 ‘...people with disabilities are often denied the friendships, educational opportunities, information and self esteem to stand up for their rights and get their opinion heard’. J Cross & L Zeni, 1993, p. 13 48 See for a variety of examples National People with Disabilities and Carer Council, 2009 and the Disability Representative, Advocacy, Legal and Human Rights Organisations, Australian Civil Society Shadow and Baseline Report to the UN Committee on the Rights of Persons with Disabilities, 2012 47 [11] International Human Rights Instruments,49 intended to apply to everyone without distinction of any kind, ‘persons with disabilities continue to face barriers to their participation as equal members of society and violations of their human rights in all part of the world.’50 ‘Advocacy identifies and draws attention to mistreatment, injustice and oppression. It seeks to ensure that injustice is exposed and practices that are unacceptable are discontinued. Advocacy aims for people with disabilities to be afforded the same benefits and opportunities as are available to other citizens and continually strives for a fairer society for all people with disabilities’. 51 Advocacy is a safeguarding mechanism which gives people with disabilities the means by which to ‘challenge the societal devaluation they experience, the discrimination, the limitations of opportunity and the inadequacy of our society’s response to people with disability and their family.’52 What do Independent Advocacy Agencies do? Through NDAP, advocacy agencies are funded to carry out advocacy activities according to six different models. Most advocacy agencies are funded by the Commonwealth or the States and Territories to deliver a variant on one or more of these models. The six models are now reasonably well established and understood within government. They were the subject of extensive consultation and refinement over a number of years resulting in a Report by Jenny Pearson in 200953 which explained in some detail how they work. NDAP funded agencies agree through their funding Agreement to deliver one or more of these models of advocacy54 and to submit to quality assurance processes that consider evidence (specific to their form of advocacy55) of compliance with the Disability Advocacy Standards. The models of advocacy are described slightly differently in different documents however they are generally understood as follows: Individual Advocacy, where a person with disability is supported to exercise their rights on a one to one basis Self Advocacy, where people with disabilities are supported to advocate on their own behalf Family Advocacy, which supports family members to advocate with and on behalf of a family member with disability Citizen Advocacy, which matches a person with disability with a community member who makes a commitment to stand beside the person as their advocate over the longer term Legal Advocacy, where a legally trained advocate supports a person with disability on a one to one basis to address legal issues 49 United Nations, The Universal Declaration on Human Rights, 1948; United Nations, International Covenant on Civil and Political Rights, 1976 and United Nations, International Covenant on Economic , Social and Cultural Rights, 1976 50 United Nations, CRPD, 2006, Preamble, paragraph (k) 51 J Cross & L Zeni, 1993, p. 13 52 J Cross & L Zeni, 1993, p. 12 53 Jenny Pearson & Associates Pty Ltd, Research of the Models of Advocacy funded under the National Disability Advocacy Program - Final Report, 2009 54 Commonwealth of Australia, Terms and Conditions - Standard Funding Agreement: For Agreements entered into from 11 May 2011, Schedule Version 3.5, July 2011, Item B 3.8 55 (FaHCSIA), Quality Toolkit for the National Disability Advocacy Program, 2012, p. 45 and Attachment 5. [12] Systemic Advocacy which seeks changes to legislation, policy and service practices to benefit a significant number of people with disabilities Self Advocacy, Family Advocacy and Citizen Advocacy These models all focus on reducing the susceptibility of an individual with disability to abuse, neglect or injustice by working to ensure that they and/or other people in their lives are ready and able, with the necessary advocacy knowledge and skills, to advocate for them should the need arise. These three models also involve the advocacy agency providing the advocate (self, family or citizen) with information and advocacy advice when requested on individual advocacy matters. They have the benefit of enabling many issues to be resolved quickly and effectively, with minimum disruption to key relationships and before anything of a serious nature occurs. Legal Advocacy This model applies professional legal skills coupled with specialised disability knowledge to individual advocacy matters. As such it is a legal variant on the Individual Advocacy model. Individual Advocacy The individual advocacy model operates reactively on issues that are brought to the advocacy agency by a person with disability or someone acting on their behalf. Referrals are commonly made by government officials or service providers who recognise the need for independent individual advocacy support. In most cases, they will refer on only those issues that are difficult to resolve or in which they have a conflict of interest. Where everything is going well for a person with disability and their relationships with their families, service providers and local communities are respectful and sustaining they do not seek individual advocacy support. Thus individual advocacy operates primarily as a trouble shooter or circuit breaker in difficult situations where there are no easy answers. The individual advocacy model commonly involves an advocate working with a person with disability to identify: their advocacy issue/s and any relevant information what the person wants to achieve the strategies available to address the issue the likely outcomes from using a particular strategy the strategy/s that the person wishes to pursue who will do what and when When the agreed actions have been taken, the advocacy work involves a review of what has been achieved and a consideration of what more needs to be done following the same process as before. The intention is that the advocacy work is issues based and short term; and that the person with disability is supported and enabled, as far as possible and to the extent that they choose, to be the decision-maker and to self advocate. Thus the agency advocate will, at different times, act as representative of, assistant to, or behind the scenes supporter of, the person with disability. [13] Individual advocacy thus supports the person with disability to make decisions and exercise control over both the advocacy process and the outcomes achieved. The range of issues addressed through the work of individual advocacy organisations is broad. NDAP funded agency performance reports to The Department of Families Housing Community Services and Indigenous Affairs (FaHCSIA) until June 2009 provided useful information about the kinds of issues addressed. Some agencies continue to collect and publically report this information56. An example of the range of issues addressed though individual advocacy is found in the Disability Advocacy section of the Advocacy Law Alliance Annual Report 2010/1157. Advocacy Issues abuse/neglect accommodation discrimination or rights education employment % 3.7 12.8 8.8 6.6 1.9 equipment finances health 1.5 10.6 3.8 Advocacy Issues independent living legal physical access recreation, social or family service (gaps, access, policy, reduction or complaints) transport vulnerable/isolated other % 5.9 16.9 1.2 1.9 15.3 1.6 6.6 1.2 The CRPD Shadow Report58 and the Shut Out Report59 provide examples of the kinds of matters that advocacy agencies become involved in alongside people with disabilities. Systemic Advocacy Systemic advocacy seeks changes to legislation, policy and service practices to benefit a significant number of people with disabilities. It takes up, on a regional, state or national level, rights and wellbeing issues for people with disabilities that are not suited to individualised solutions. Advocacy agencies seek systemic change on behalf of people with disabilities: when a systemic barrier prevents the successful resolution of a number of individual advocacy matters; and/or on the advice of a consumer representative committee established to provide advice in this area and/or at the direction of a governing board with a majority of people with disabilities Every NDAP funded agency that carries out systemic advocacy will, in the next 18 months, for quality assurance purposes, be required to provide evidence of how people with disabilities are involved in their systemic advocacy decision-making.60 56 For example ACT Disability, Aged and Carer Advocacy Service (ADACAS), Annual Report 2010-2011, 2011 p. 20; Advocacy Law Alliance Inc. Annual Report 2010-2011, 2011 pp. 9-10, viewed 30 June 2012, http://advocacylaw.org.au/wp-content/uploads/ALA-Inc-Annual-Report-Audit-short-form.pdf 57 Advocacy Law Alliance Inc. Annual Report 2010-2011, 2011 pp. 9-10, viewed 30 June 2012, http://advocacylaw.org.au/wp-content/uploads/ALA-Inc-Annual-Report-Audit-short-form.pdf 58 Disability Representative, Advocacy, Legal and Human Rights Organisations, 2012 59 National People with Disabilities and Carer Council, 2009 [14] How will Advocacy for Individuals change with an NDIS? With the NDIS61 DANA would expect to see:62 people with disabilities growing in their desire to address rights and well-being issues in their lives because they are becoming accustomed to exercising power over their lives and because they begin to see a different picture of what their life might be Example: A man, for twenty years of his adult life, has lived with his parents (his legal guardians). When he receives his NDIS entitlement he wants to use it to move to the other side of the city to live closer to his work and his workplace colleagues. He wants advocacy support to deal with his parent’s total opposition to the move and their refusal to allow the DSO to work with their son to plan for and manage the move. people with disabilities growing in their confidence to self-advocate i.e. requiring more self advocacy support and less representational support Example: A woman, now in her 50’s, has through her life, required significant levels of support to manage her personal care needs and had multiple experiences of abuse and neglect at the hands of service providers. Prior to the NDIS, she asked her advocate to look for avenues of resolution that did not involve her confronting her abuser or in any way threatening her relationship with her service provider. With the NDIS and an ongoing entitlement to support, for the first time she may feel free to challenge any abuse or neglect directly, by reporting the perpetrators to the appropriate authorities, refuting their version of events and seeking justice for herself and others in a similar position. She will now want advocacy support to enable her to speak up effectively and safely. a shift in the kinds of disability service issues to be addressed, with a lesser focus on service access issues and a greater focus on dealing with contractual and consumer rights issues Example: The NDIS will entitle a person with disability to choose their services from a range of providers or individuals. The ongoing relationship between the person with disability and the service provider will be defined by the nature and terms of the service or employment agreement entered into. An agreement of this kind will give rise to legal rights and responsibilities. If a relationship turns sour, significant and complicated issues can occur. Where the service provider is a large organisation, it will have specialised complaints handling teams ready to respond. Where the service is provided by an individual as an employee of the person with disability the individual will have Union support. The person with disability will likewise want support from an advocacy specialist to assist them to exercise their rights as consumers, employers and service users. 60 Australian Government Department of Families, Housing, Community Services and Indigenous Affairs, Disability Services Standards (Advocacy Standards) (FaHCSIA) Determination 2012 61 In the form recommended by the Productivity Commission, 2011 62 The examples in this section of the paper are derived from the experiences of advocates, working alongside people with disabilities who have had the additional freedom, personal power and responsibilities associated with managing or directing an individual support package or a compensation payout. [15] a shift in the kinds of issues to be addressed, with a lesser focus on disability specific issues and a greater focus on using the support to engage in mainstream activities. This is because the absence of necessary specialist disability support is a preliminary barrier to broader economic, community and social inclusion of person with disabilities. If this barrier is removed, other barriers will become more visible and require advocacy knowledge, skills and involvement to resolve Example: A boy with both intellectual and physical disabilities is excluded from involvement in a nature studies project his class is working on because the project requires traversing rough terrain. Prior to having an NDIS entitlement the boy could not access a suitable wheelchair for the purpose. When the NDIS package is used to secure the loan of a rugged terrain wheelchair, the teacher continues to exclude the boy because his involvement would require a change in the way the project activities are conducted. The boy’s parents want advocacy support to try to address this situation without damaging their son’s relationship with his teacher. People with disabilities growing in their desire to make choices consistent with their interests because they see the NDIS entitlement and flexibility offering them a greater likelihood of being able to get a reasonable outcome. Example: A woman has worked for many years in a supported employment service and has a goal of ultimately working in a large hotel. She has been unable to achieve this because her service provider/employer resisted unbundling her support dollars and downplayed her skills. With her NDIS entitlement and self advocacy support she is now a better position to convince her family and friends, her NDIS LAC, her DSO and a potential new employer that this is achievable and she has the DSO and financial resources to make it happen. What about Advocacy for Individuals will remain the same with an NDIS? Significant numbers of people with disabilities will continue to face major barriers to expressing and implementing their wishes and be lacking in family support for this purpose. These people will continue to need the support of individual advocates to ensure that their needs and wishes are respected and addressed to the same extent as those with strong personal or family advocacy resources. There will continue to be public pressure to reduce taxes and hence to reduce the entitlement of people with disabilities to ongoing support. Individual advocates will continue to assist individuals with disability to make their case for a reasonable level of entitlement and support. Polices and processes adopted by Government and service providers will continue to disproportionately disadvantage certain individuals. Individual advocates will continue to assist affected people with disabilities to make the case for an alternative approach that meets their individual circumstances. In doing so, advocates assist in identifying and addressing system gaps. Government and service workers will continue to make mistakes that they are unwilling to recognise and correct. Individual advocates will continue to assist in the process of bringing errors to the attention of the relevant authorities and seeking redress and rectification for affected individuals. [16] This work commonly has the effect of stopping small issues becoming significant problems, preventing substantial damage to individuals and saving time and money in the long run. Funding bodies will maintain a preference for ever increasing levels of control at the expense of flexibility and autonomy for the person with disability.63 This is because inevitably some individualised arrangements will come to public attention because they do not work well and governments will respond with increasing regulation to manage the perceived risk. Individual advocates will continue to assist the person with disability to assert their autonomy and right to individualised self directed services. Government and service workers will continue to bring to their work the same prejudices and misunderstandings that are held in the broader community and many will come with an unhelpful history of exercising control over people with disabilities. Independent individual advocates will continue to model respectful ways of providing services and support to a person with disability and make available information about alternative power sharing arrangements. Individuals with disability will continue to be disadvantaged when their interests are in conflict with those of their service provider, particularly if the service provider is a large organisation with substantial resources and if it is not easy for the person with disability to move elsewhere. Individual advocates in these circumstances will continue to assist in redressing the power, information and skill imbalance. People with disabilities will continue to experience multiple and many-faceted issues that are incapable of resolution without the involvement of a variety of people and agencies (from across government and the service system), each with their own scope of operation and limitations. Individual advocates will continue to stand beside people with disabilities in such situations to insist that the people and agencies with the potential to make a difference remain involved until appropriate solutions are found. Government funders and service organisations will continue to engage in quality assurance processes that involve the consumers of their services. Individual advocates will continue to support people with disabilities to engage effectively in these processes64 so that the processes are more likely to lead to better service quality from a consumer perspective. People with disabilities will continue to face barriers to effective inclusion and the realisation of their rights in many areas of their life. Individual advocates will continue to support people with disabilities to effectively assert their rights whenever they experience injustice, exclusion or discrimination because of their disability. People with disabilities who do not qualify for individualised supports through an NDIS will continue to be unable to access necessary disability supports and so seek advocacy assistance and personally tailored information to address rights, well-being and inclusion issues. 63 D Schwartz, Crossing the River, Creating a Conceptual Revolution in Community & Disability, 1992 64 See, for example, Joint Accreditation System of Australia and New Zealand, Procedure Number 18 – Requirements for bodies providing audits and certification of disability employment organisations, Issue No 3, 2008, pp. 3, 9 & 24 [17] People with disabilities, their families and allies will continue to need information tailored to their particular purposes about the rights and entitlements of people with disabilities and about advocacy strategies that have previously been successful. They will also continue to need specifically targeted training and advice to support their advocacy efforts. For the reasons detailed above many people with disabilities will therefore continue to want the support of an independent advocate (family member, citizen or paid) and/or access to information personalised to suit their circumstances: during eligibility or assessment processes to challenge the merits of a decision to challenge the validity of a procedure or process when an issue or conflict arises with the funding body or specialist disability service provider to resolve rights or well-being issues to effectively engage in service quality processes when an issue arises with a mainstream provider or system This will be true even though a DSO or NDIA case manager may offer support because that support will be incidental to their primary function, will probably not bring with it highly developed advocacy skills or knowledge and will not reliably be partisan to interests of the person with disability due to competing government and service interests. How will an NDIS affect systemic advocacy? It is anticipated that a properly funded NDIS should lead to a reduction in the requirement for systemic advocacy to secure specific disability supports for those people who are identified as being eligible for Tier 3 supports. It is not clear however whether the support situation will improve under an NDIS for the very significant numbers of people with disability who will not qualify for Tier 3 supports but will still require a level of assistance to manage the ordinary activities of daily life. Systemic advocacy will also continue to be required to address, on a systems level, many of the same issues that have been identified above in relation to individual advocacy. It will therefore be needed to: ensure that all people with disability are able to access necessary supports and services counter external forces seeking to reduce the public contribution to disability support Identify and respond to gaps in the supports provided Promote support options for people with disabilities that comply with the CRPD Address the barriers to rights realisation, economic participation and social inclusion for people with disabilities across all parts of society Counter the tendency of governments to continually increase control over the expenditure of public monies [18] DSOs and Independent Advocacy Below, reproduced in it’s entirely, is the Productivity Commission Table 9.265 which provides a comparison between the roles of LAC’s and DSO’s. A further column has been added to enable a direct comparison of their roles with that of independent advocacy agencies. Not addressed here but equally important is that independent advocacy organisations have similar roles to play alongside people with disabilities in their interactions with the NIIS and in other government, business and community spheres. The key roles, described in Table below, of LAC’s ( administering NDIA funding in accordance with NDIA policies and processes) and DSO’s ( assembling, brokering, administering and managing packages of support) will commonly require LACs (as funder) and DSOs (as service provider) to give priority to agency interests over those the person with disability. This means that their advocacy support will be limited to matters incidental to the performance of their key roles and to matters that do not conflict with their organisational interests. Additionally, they will bring predominately administration and governance (LACs), planning and management (DSOs) knowledge and skills to a situation rather than advocacy and justice knowledge and skills. 65 Productivity Commission 2011, p. 421 [19] Role or Function Local area coordinator (NDIA) Disability Support Organisation Independent Advocacy Assessment As the key NDIA point of contact with the person, their early involvement (visits, learning about the person, providing early guidance and advice) will help inform the draft assessment package. Helps the person think more broadly about the supports they will need, and their life aspirations (allows the person to approach the NDIA assessment better prepared). Planning Immediate service planning, including providing information and advice on available supports; indicators of quality; available local community supports, resources and activities to fulfil needs or aspirations; and how to access other government supports. No role Where needed, assist with short and longer-term planning, focusing on life possibilities, succession planning etc. Will tend to be wide ranging, iterative and require creative solutions. (Some not-forprofits do this now.) NDIS-funded where need has been assessed. Additional funds provided as part of the entitlement may be used for brokerage if the NDIA assesses that need. For others, hire DSOs on fee for- service basis. If the person wants self-directed funding administration to be done by the DSO, costs should be met from the person’s cashed out individual package On request provides support (independent and partisan) to the person to express their needs and wishes during the assessment process. On request supports (with advocacy skills and knowledge) the person to challenge the validity or merits of an assessment. On request supports the person to express their views in NDIA Quality Improvement processes. Conducts systemic advocacy to improve the assessment process and outcomes for people with disabilities. On request supports (with advocacy skills and knowledge) the person to assert their right to be the decision-maker in the planning process, for example, where any disagreement arises with the LAC, guardian or the DSO. On request supports the person to express their views in NDIA and DSO Quality Improvement processes. Conducts systemic advocacy to improve the planning process and outcomes for people with disabilities. On request supports (with advocacy skills and knowledge) the person to take action in relation to concerns about the quality of the brokerage that is provided. On request assists/supports the person to express their views in DSO Quality Improvement processes. On request supports (with advocacy skills and knowledge) the person to challenge decisions taken by others that prevent or limit them in self directing their funding. On request supports the person to express their views in quality improvement processes connected with self-directed funding policy and processes. Systemic advocacy to improve government policy and processes in relation to self directed funding. On request supports (with advocacy skills and knowledge) the person to claim equivalent rights to others across all aspects Brokerage Administration of self-directed funding packages Provides guidance on suitability for the person, and undertakes compliance checking Community access Operates on an individual level through planning and assessment as May be block funded to offer community brokerage, community [20] and inclusion described above capacity building and community awareness (chapter 4) Regulatory oversight Would pass evidence of breach of service standards or other service problems to LAC Resolution of disputes between service providers and NDIS participants Periodic checks on people, (according to degree of vulnerability). Contact point for complaints and breach of standards (as LACs would be the major source of information for NDIS participants about service providers). Able to initiate investigation against service providers, or pass to Office of Inspector–General Would seek to resolve more serious conflicts. Has access to past information on both person and provider and authority to initiate further investigation if necessary (or to involve Office of Inspector– General) Where needed, may be involved in resolving minor issues concerning services the DSO has helped organise, or in advising people how to take their complaint further, including how to contact advocacy services On request supports (with advocacy skills and knowledge) the person throughout the entirety of any dispute with a service provider. Assist in transitioning from one service provider to another Can provide information, advice and support to people transitioning (if required). Where transitions occur due to quality problems, LAC would advise Office of Inspector-General (see below). People with a longstanding and positive relationship with a DSO may be most comfortable with their advice and assistance in transitioning. DSO would keep LAC informed. On request provides support (independent and partisan) to the person to express their needs and wishes during a transition process. [21] of the life. Conducts systemic advocacy activity directed at rights protection and promotion and community inclusion. On request supports (with advocacy skills and knowledge) the person to effectively present their viewpoint and supporting evidence in any complaints process. On request supports the person to express their views in quality improvement processes connected with complaints handling schemes. Conducts systemic advocacy to improve the quality and effectiveness of complaints processes in delivering positive outcomes for people with disabilities. Future Advocacy Administration and Funding Having clearly established the role of independent advocacy into the future it then becomes important to consider how this is best provided and to what level. To some extent the level of advocacy support required in the future depends on how well the established system of services and support responds to the needs, rights and interests of people with disabilities. This is difficult to estimate ahead of time, before it is known what the system will look like, how well it will be funded and the extent to which it provides for consumer control and service individualisation. What is known, however, is that there is a vast pool of unmet need for advocacy support at present and that agencies in some locations report prioritising to such an extent that people with very serious issues are turned away in favour of those with survival level issues. We know also that advocacy support is even more important at times of system change: to ensure that the experiences and knowledge of the people most affected by it are able to influence the change process and the overall outcomes; and so that the unintended impacts of previously untried policies and procedures and any system gaps are quickly identified and addressed on an individual and system level. Additionally we have identified above, ways in which the demand for advocacy is likely to grow and change in the proposed new system. This all points to a need to ensure that the accepted models of independent advocacy support are available on request to people with disabilities and their allies throughout the country to safeguard the rights and well-being of people with disabilities entering the new system and to assist in the implementation of the NDS. Currently, not all forms of advocacy support are equally available to people with disabilities in all locations. The mapping exercise recently undertaken by FaHCSIA will hopefully point to the gaps and limitations in the current availability of the different models of advocacy across the country. A gap analysis, when added to the information provided in this paper, can then pave the way for a sensible discussion about how to address the unmet need for independent advocacy support in this country. This paper has shown the important contribution that independent advocacy makes, as one of the suite of disability specific NDA funded supports, to enabling people with disabilities to achieve the NDA objectives of an enhanced quality of life and valued community participation. It has also shown that independent advocacy will continue to be important,66 for these purposes when we have an NDIS and NIIS and that its ‘independence’67 is critical to its effectiveness. For this reason the minimum level of funding dedicated to independent advocacy support should be a defined percentage of the NDIS and NIIS (and any other disability specific) funding pools. This funding should however be administered by a government agency that is at arms from the NDIS or NDIS. For some time DANA has argued that the work of administering the government funding program for independent advocacy support for people with disabilities should be carried out by a national statutory authority. This authority, operating free from the influence of the NDIS or NIIS, would take receipt of the defined percentage (discussed above) of the insurance (and any other disability specific) monies and distribute it to independent advocacy agencies through direct funding arrangements.68 66 For people who fall within Tier 2 or Tier 3 From service providers and from the NDIS and NIIS 68 As recommended in Productivity Commission 2011, p. 524 because advocacy work undertaken is in the nature of a public good with potential to benefit many people with disabilities. 67 [22] The authority would also take responsibility for Promoting the value and importance of independent advocacy Advocacy sector planning and development Management of core recurrent advocacy funding perhaps via State based officers Oversight of the Performance Reporting and Quality Assurance Framework for advocacy providers Research in relation to advocacy practice, administration and demand If the proposal to create a National Statutory Advocacy Authority is not accepted, the next best alternative would be for independent advocacy funding to be administered by one of the following: A Commonwealth Department that is not linked to the NDIA or NIIS State Departments not linked to the NDIA, the NIIS or to other services commonly subject to advocacy. In making this decision and in designing an Advocacy Program for the future it will be important to have regard to the intended governance arrangements for the NDIS and NIIS, the implementation plan for the NDS and the key principles identified in DANA’s 2010 paper ‘A Proposal for A New Administrative and Leadership Framework For Disability Advocacy’ as follows: 1. ‘Government should provide core recurrent advocacy funding on the basis that independent advocacy is a fundamental and essential support for vulnerable people with disabilities. 2. Program administration and funding should be separate from political or government influence because advocacy is commonly directed against government agencies or services provided under government funded programs. 3. To minimise the possibility or the perception of conflict of interest, advocacy support should be provided only by dedicated advocacy organisations that do not also undertake service provision. 4. Individual advocacy support should be available in a variety of forms to all people with disability. 5. Systemic advocacy capacity should exist in each state/territory to respond to the range of issues that impact on the rights, interests and needs of people with disabilities. 6. Specialist advocacy support and advice should be available across Australia for specific population groups and where specific advocacy knowledge is required. 7. Advocacy organisations should be formed in consultation with and remain connected to local communities. 8. Advocacy organisation funding should provide for advocacy development... 9. Advocacy organisation funding should provide for the development of relationships with key organisations and agencies... 10. Advocacy organisation funding should be at a level to ensure the viability and sustainability of the organisation... 11. Government funding for the Advocacy Program should respond to the unmet need for advocacy...’69 This publication has been prepared by the Disability Advocacy Network Australia (DANA) Ltd for the Australian Government, represented by the Department of Families, Housing, Community Services and Indigenous Affairs. The views expressed in this publication are those of Disability Advocacy Network Australia (DANA) Ltd and do not necessarily represent the views of the Australian Government. 69 Disability Advocacy Network Australia (DANA) Ltd, A Proposal for A New Administrative and Leadership Framework For Disability Advocacy, 2010, p 19, viewed on 30 June 2012, http://dana.org.au/submissionspublications/submissions/ [23]