Independent Advocacy and the NDIS

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:

Copyright © 2012 Disability Advocacy Network Australia (DANA) Ltd

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

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 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 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:

‘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 themselves[21]

·  individual advocacy is integrally linked to systemic and other forms of advocacy[22]

·  neither systemic, nor individual advocacy are well suited to a user pays system so independent advocacy should continue to be block funded[23]

·  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 all[24]

·  the NDIA should not directly fund advocacy support however there may be merit in the NDIA contributing additional untied funds to the existing advocacy programs[25]

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 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 complaint[27]

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 funding[28]

·  facilitate community capacity building[29]

·  assist in resolving minor service issues and providing information about complaints processes and advocacy organisations[30]

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 influences[31]:

·  the Judeo/Christian teachings directed to safeguarding and protecting those in need[32]

·  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 disability[34]

·  the articulation of some influential principles within human services[35]