Senate Standing Committee on Community Affairs

PO Box 610 Parliament House Canberra, ACT 2600

25 January 2013

Dear Senator Moore and Committee Members,

We are a Disability Support Organisation in the Hunter, recently established in anticipation of the launch of NDIS in our region. The establishment of the Hunter Disability Support Organisation is hosted the Physical Disability Council NSW, In Control Australia and Resuring Families.

We thank you for this opportunity to comment on the National Disability Insurance Scheme (NDIS) Bill currently before Parliament.

Yours sincerely

Linda Hughes & Catherine Mahony

Community Development Workers Hunter Disability Support Organisation On behalf of In control Australia

Introduction

We are a new Disability Support Organisation (DSO) based in the Hunter region of NSW. While we are in the process of establishing ourselves - not yet incorporated nor formally named - we are off to a good start with twenty people active as a working group and a growing number of people interested in being involved. The Hunter DSO is a new type of organisation as was recommended in the Productivity Commission (PC) report (2011). The PC report acknowledged that in order to gain the full benefits of the NDIS persons with disability and their families will require additional support and assistance as “the changes implicit in a shift to a model based on personal choice and decision-making are fundamentally different from the current arrangements” (p. 416). The development of the Hunter DSO has been supported through funding from the Federal Government’s Practical Design Fund and we are hosted by the Physical Disability Council NSW, In Control Australia and Resourcing Families. We believe we have a valuable contribution to make and will be documenting our experience to create a record of learning for establishing DSOs in other areas of Australia. The Hunter DSO is a user led organisation, that is, an organisation of and for persons with disability and their families. We are a collective voice of persons with disability, independent of government and service provision and committed to building the capacity of persons with disability as full citizens.

Aim of submission

This submission highlights the important and unique role of DSOs in ensuring people with disability have genuine opportunities to exercise control and choice, direct their supports and lead the lives they choose, thereby achieving active citizenship. We consider the legislation needs to incorporate principles that enable and actively support the establishment of organisations thats are independent of service provision and government, that empower people with disability and build our capacity to achieve active citizenship through economic and social participation in Australian society.

Functions of DSO as described by the Productivity Commission

The PC report recommended the establishment of a new organisation (DSO) with the principle role of acting “as an agent for a person with a disability on a range of matters, including in relation to the implementation of that person’s package of services from the NDIA” (p.414).

People could choose to use DSOs to:

• provide them with personal planning services over and above what they obtain from the NDIS
• help them get the best value from their self-directed funding, once that has been determined under NDIS procedures
• help them develop the skills and confidence to practically exercise choice
• provide them with information of the quality and choice of support services available from specialist and mainstream providers
• assemble ‘packages’ of supports from specialist and mainstream providers
• undertake administrative tasks such as record-keeping and tax returns (Box 9.2, p. 416).

Further the PC report noted DSOs’ role in building the capacity of generic community services to become more accessible and inclusive of people with disability.

The PC envisaged DSOs facilitating “greater innovation in the provision and coordination of services to people with disabilities” (p. 416).

DSO support for individuals will be invaluable in assisting them to plan while simultaneously increasing their capacity to research, develop and implement their own plans, particularly critical in the early days of the NDIS when so few people have had any real experience in exercising choice and control. This will reshape what people with disability seek for their support, moving people from dependent users of service to people with capacity, whose initiative is rewarded. This in turn will lead to significant service reform in response to people with disability becoming more informed and empowered. Assistance of this nature is unlikely to come from within the NDIA or from service providers

A Case for a User Led DSO

A user led DSO is a unique type of organisation inhabiting a new space independent of service provision and government. With minimal conflict of interest, user led DSOs are well placed to assist people with planning, capacity building and empowerment.

Overseas, in particular the United Kingdom, there are numerous examples of user led organisations providing a range of supports including: information and advice; capacity building and peer support. These user led organisations have been most successful in assisting people with disability make the most of their individualised funding and self-directing their support. The UK Government has acknowledged the unique and valuable role played by user led organisations by providing significant funding for their services and support.

With the lived experience of people with disability and their families, a support organisation led by its users, understands the complexity of building a life included in the community and the importance of building the knowledge, skills and confidence in people to lead the lives they want. We know it takes more than a funding package to build a good life.

For the NDIS to truly transform the lives of people with disability, local DSOs are essential. As a user led organisation we work alongside our peers, providing information, tools and supports, as well as opportunities to share and learn from each other.

Current situation

NDIS without DSO NDIS with DSO

People with disability as People with disability as People with disability as dependent users of service consumers of service who active citizens, exercising have some choice but choice and control, limited opportunity to engaging in social, avail themselves of the political, employment and choice and control community anticipated in the NDIS

There are currently few DSOs operating, particularly outside major cities. The Hunter DSO believes the NDIS Bill should endorse the development of DSOs throughout Australia. This could be through grants, startup funding, and action learning projects that build the capacity of people with disability and support community awareness and inclusion.

5. Recommendations

a) The Hunter DSO recommends the NDIS Bill recognise the unique and vital role of local DSOs and incorporate principles that enable and actively support the establishment and operation of organisations that are: independent of service provision and government; that empower people with disability and build their capacity to achieve active citizenship through economic, social and political participation in Australian society

We believe this recognition can be built on:

• s3(4)(4) “people should be supported to exercise choice and control”
• 3(4)(9) “people with disability should be supported in all their dealings and communications with the agency so that their capacity to exercise choice and control is maximised in a way that is appropriate to their circumstances and cultural needs”
• s13(2)(b) where the definition of general support is “an activity engaged in by the agency in relation to a person”

2. The Hunter DSO recommends that the role of DSOs in assisting people to plan be enabled through a new s32(3) indicating that “the CEO may provide assistance to enable people with disability to prepare a plan”