NDIA Accountability Project

Carers NSW submission to the Inquiry into the National Disability Insurance Scheme Bill 2012

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Carers NSW submission to the Inquiry into the National Disability Insurance

Scheme Bill 2012

January 2013

Summary of recommendations

  1. Carers NSW recommends that Object (1b) in Part 2 Section 3 be amended to: “support the independence and social and economic participation of people with disability and their families and carers” in recognition of the right of carers to social and economic participation.

  2. Carers NSW recommends that Object (1c) in Part 2 Section 3 be amended to: “provide reasonable and necessary supports, including early intervention supports, for participants in the National Disability Insurance Scheme launch, and their families and carers”.

  3. Carers NSW recommends that a ninth Object be added to Part 2 Section 3 to state that the Act will give effect to the Commonwealth Carer Recognition Act 2010 and the principles of the Statement for Australia’s Carers.

  4. Carers NSW recommends that the Bill be amended to provide for a comprehensive, holistic and nationally consistent assessment of carers needs, in line with the recommendations of the Productivity Commission.

  5. Carers NSW recommends that Chapter 3 Participants and their plans be amended to provide for separate carer assessment.

  6. Carers NSW recommends that the Bill be amended to support the provision of funded services and support for carers through the NDIS, in line with the recommendations of the Productivity Commission.

  7. Carers NSW recommends that Section 33 be amended to identify the need for participants’ plans to also respond to the needs and choices of the carer.

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Introduction

Carers NSW welcomes the opportunity to provide a submission to the Senate Standing

Committee on Community Affairs Inquiry into the National Disability Insurance Scheme Bill

(the Bill). Carers NSW strongly supports the introduction of the National Disability Insurance Scheme (NDIS), and recognises that this legislation will be a significant step towards securing its implementation.

Carers NSW and the national Network of Carers Associations have serious concerns relating to some aspects of the legislation. These concerns will be outlined in this submission, and in the submissions from Carers Australia and the other state and territory Carers Associations.

Cares NSW urges the Senate Standing Committee to have a strong focus on the role and needs of carers in their deliberations, to ensure that the NDIS supports people with a disability and their families and carers, and that it redresses the current ‘unreasonable reliance’i on carers. It is vital that we get the detail of the NDIS legislation right. The hopes and dreams of thousands of Australians who have a disability, or care for a person who does, depend on it.

About this submission

This submission will focus on just three significant concerns relating to carers of people with a disability and the Bill, and will make some specific suggestions as to how they could be addressed in the Bill. These concerns are:

  • the need for carer recognition and inclusion
  • the importance of carer assessment
  • the need for funded support for carers Carers NSW has chosen to take a quite narrow focus in this submission, on the issues that we consider to be of critical importance to the role of carers in the NDIS. However, we share many of the concerns of Carers Australia and the national Network of Carers Associations and support the broader and more detailed submission of Carers Australia and the submissions from the other state and territory associations.

About Carers NSW

Carers NSW is the peak organisation for carers in NSW. It is a member of the national Network of Carers Associations and has an exclusive focus on supporting and advocating for all carers in the state.

The vision of Carers NSW is that all carers in NSW are recognised, valued and supported by the community and by governments.

Carers NSW defines a carer as any individual who provides unpaid care and support to a family member or friend who has a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail.

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  1. Carer recognition and inclusion in the NDIS Bill Carers NSW is disappointed at the lack of carer recognition in the Bill. The NDIS is for people with a disability, and must have their interests as its primary focus. However, the NDIS, and therefore the Bill, must consider people with a disability in the context of their family and community, and support the rights of families and carers to choice in the way they live their lives. In the words of Jenny Macklin, Minister for Families, Community Services and Indigenous Affairs and for Disability Reform and Senator McLucas:

An NDIS is focused on the needs of a person with disability – but it can’t be blind to the needs and aspirations of those who love and care for them.ii

1.1 The Carer Recognition Act 2010

The Commonwealth Carer Recognition Act 2010 (the Act) which commenced in November 2010, establishes the Statement for Australia’s Carers. The Statement contains ten key principles that establish how carers should be considered and treated by Commonwealth agencies and relevant organisations funded to support carers. The ten principles are that:

  1. All carers should have the same rights, choices and opportunities as other Australians, regardless of age, race, sex, disability, sexuality, religious or political beliefs, Aboriginal or Torres Strait Islander heritage, cultural or linguistic differences, socioeconomic status or locality.

  2. Children and young people who are carers should have the same rights as all children and young people and should be supported to reach their full potential.

  3. The valuable social and economic contribution that carers make to society should be recognised and supported.

  4. Carers should be supported to enjoy optimum health and social wellbeing and to participate in family, social and community life.

  5. Carers should be acknowledged as individuals with their own needs within and beyond the caring role.

  6. The relationship between carers and the persons for whom they care should be recognised and respected.

  7. Carers should be considered as partners with other care providers in the provision of care, acknowledging the unique knowledge and experience of carers.

  8. Carers should be treated with dignity and respect.

  9. Carers should be supported to achieve greater economic wellbeing and sustainability and, where appropriate, should have opportunities to participate in employment and education.

  10. Support for carers should be timely, responsive, appropriate and accessible.iii The principles of the Statement for Australia’s Carers, and the obligations created by the Act, must be upheld in the Bill.

1.2 Carer recognition in Chapter 1 Part 2 Objects and principles

Greater recognition of carers needs to be incorporated into the Objects and Principles of the Bill (Chapter 1 Part 2), in line with the Statement for Australia’s Carers. Currently there are no objects that relate to carers, despite the significant role of carers in supporting people 3

with a disability, and the significant impacts that have been borne by carers, as a result of the ‘fragmented, underfunded, unfair and inefficient’ disability service system.

Object (1b) “support the independence and social and economic participation of people with disability” should be amended to “support the independence and social and economic participation of people with disability and their families and carers”. As established in the Statement for Australia’s Carers:

Carers should be supported to achieve greater economic wellbeing and sustainability and, where appropriate, should have opportunities to participate in employment and education.

The right of carers to social and economic participation should be explicitly recognised in the Objects, particularly given the high levels of social isolation and low levels of workforce participation that are currently associated with caring.

Recommendation 1: Carers NSW recommends that Object (1b) in Part 2 Section 3 be amended to: “support the independence and social and economic participation of people with disability and their families and carers” in recognition of the right of carers to social and economic participation.

The Objects of the Act should also recognise the need of families and carers for services and support. Minister Macklin has acknowledged the need of carers for services and support, stating:

Carers will be critical to the success of an NDIS, providing care and support for people with significant and permanent disability. And we need to make sure that an NDIS supports them. A key part of an NDIS is that it supports carers to sustain their caring role, and takes account of their needs, goals and aspirations.iv

Recommendation 2: Carers NSW recommends that Object (1c) in Part 2 Section 3 be amended to: “provide reasonable and necessary supports, including early intervention supports, for participants in the National Disability Insurance Scheme launch, and their families and carers”.

An additional Object should be added to Section 3, to explicitly recognise the need to give effect to the Commonwealth Carer Recognition Act 2010 and the Statement for Australia’s Carers.

Recommendation 3: Carers NSW recommends that a ninth Object be added to Part 2 Section 3 to state that the Act will give effect to the Commonwealth Carer Recognition Act 2010 and the principles of the Statement for Australia’s Carers.

  1. Carer assessment Carers should have the right under the NDIS to their own assessment, as individuals in their own right, with needs of their own. Carer assessment in the NDIS would take into account

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the carer’s own life and priorities, their situation, the supports available to them, the impacts of their caring role, and their own health and wellbeing.

Carers NSW strongly recommends that the NDIS incorporate a comprehensive, holistic and nationally consistent assessment of carers needs, as recommended by the Who Cares…? Report on the inquiry into better support for carersv and the Productivity Commission in its Final Report on the Disability Care and Support Inquiry. The Commission recommended:

Recommendation 7.6: Where an informal carer provides a substantial share of the care package, they should receive their own assessment if they wish. This should seek to identify their views on the sustainability of arrangements and the ways in which the NDIS should support their role, including through the initiatives recommended in recommendation 15.3.

The Commission stated that carer assessment should give carers with high needs access to NDIS-funded specialist assistance.vi Without carer assessment, the NDIS will be unable to adequately or fairly assess and meet the needs of carers and of people with a disability.

The Bill currently states in section 34 Reasonable and necessary supports that

(e) the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide.

Without a separate carer assessment, it will not be possible to fairly and consistently judge what is or what is not reasonable to expect of carers and families. This subsection, without carer assessment, exposes carers to the significant risk of being forced to continue to provide existing levels of care, regardless of whether or not this is in their own best interests, or in the interests of the person with a disability; and regardless of whether or not it is the choice of either party for existing arrangements to continue.

The rights of carers to choice in their own lives, to social and economic participation, and to the services and supports that they need, must not be allowed to be sacrificed in the interests of the ‘value for money’ described in 34(c)

the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support.

People with a disability should not be forced to rely on informal supports just because they are available to them. Denying the right people with a disability to choice contravenes the principles of the Convention on the Rights of Persons with Disabilities and undermines the person centred principles that were to inform the operation of the NDIS.

Recommendation 4: Carers NSW recommends that the Bill be amended to provide for a comprehensive, holistic and nationally consistent assessment of carers needs, in line with the recommendations of the Productivity Commission.

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2.1 Carer assessment in Chapter 1 Part 2 - Objects and principles

To support the inclusion of carer assessment, a new subsection should be inserted following 4(11) to provide for carer assessment. It should specify that a separate and formal carer assessment would be conducted to take into account :

  • the carer’s willingness to continue to provide the current level of care

  • the support that the carer is (and is not) willing to provide

  • the reasonableness of the current level of care given the carer’s individual circumstances

  • the capacity of the carer to continue to provide the existing level of care

  • the carer’s goals, objectives and aspirations to the maximum extent possible. The assessment of the person with a disability should have identified their preferences about what care is provided to them by their carer, and what support they receive from formal services. The development of the participant’s plan must balance the right to choice in their lives of both the person with a disability and their carer (as identified in their separate assessments).

2.2 Carer assessment in Chapter 3 Part 2 – Participants’ plans

Separate carer assessment should also be provided for in Chapter 3 Part 2 in relation to the preparation of participants’ plans.

Recommendation 5: Carers NSW recommends that Chapter 3 Participants and their plans be amended to provide for separate carer assessment.

  1. Funded carer support The NDIS should provide carers with funded services and support to assist them in their caring role. Section 34 of the Bill, Reasonable and necessary supports, only refers to supports for the ‘participant’, and does not make any reference to supports for carers.

The Productivity Commission recognised the critical role played by carers in the care and support of people with a disability, and the need for them to be supported. In the Final Report of the Disability Care and Support Inquiry, the Commission recommended:

In order to sustain informal care and support, the NDIS should:

  • assess carer needs as well as those of people with disabilities (recommendation 7.6) and, where needed, use the assessment results to:

  • refer people to specialist carer support services including the ‘Carer Support Centres’ recommended in the Commission’s parallel inquiry into aged care and to the National Carers Counselling Program

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  • include the capacity for accessing counselling and support services for carers as part of the individual support packages provided to people with a disability

  • assess the best training and counselling options for carers of people.vii Recommendation 6: Carers NSW recommends that the Bill be amended to support the provision of funded services and support for carers through the NDIS, in line with the recommendations of the Productivity Commission.

2.2 Carer support in Chapter 3 – Participants and their plans

Under section 33 Matters that must be included in a participant’s plan an additional subsection should be added following 33(1) which identifies the need for the plan to respond to the needs of the carer.

Recommendation 7: Carers NSW recommends that Section 33 be amended to identify the need for participants’ plans to also respond to the needs and choices of the carer.

Conclusion

Carers NSW appreciates the opportunity to provide a submission to this Inquiry, which is of the utmost importance to the thousands of Australians with a disability, and to their families and carers.

The establishment of the NDIS has the potential to be a historically significant and transformative reform. Many Australians with disability, and their families and carers, have high hopes and expectations of the NDIS and the changes it will bring to their lives. In its deliberations on the Bill, Carers NSW urges the Committee to give careful consideration to the full range of issues raised in submissions to the committee, including those relating to the recognition, inclusion and support of carers, discussed here and in the submissions from Carers Australia and the state and territory Carers Associations. The Committee must ensure that this Bill, and the NDIS that it establishes, will not “be blind to the needs and aspirations” viii of the families and carers of people with a disability.

For further information please contact Alison Parkinson, Senior Policy and Development

Officer

Yours sincerely,

Elena Katrakis

CEO

Carers NSW

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Endnotes

i Productivity Commission, Disability Care and Support, Report no. 54, Final Inquiry Report, Canberra, 2011, p 331. ii Jenny Macklin and Jan McLucas, ‘National Disability Insurance Scheme Update 24’, 15 October 2012, available online at: http://www.ndis.gov.au/talking-about-ndis/sign up/previous-ndis-updates/ iii Carer Recognition Act 2010, part 2. iv Jenny Macklin and Jan McLucas, ‘National Disability Insurance Scheme Update 24’, 15 October 2012, available online at: http://www.ndis.gov.au/talking-about-ndis/sign up/previous-ndis-updates/

v House of Representatives Standing Committee on Family, Community, Housing and Youth,

Who Cares…? Report on the inquiry into better support for carers, Canberra, 2009. vi Productivity Commission, Disability Care and Support, Report no. 54, Final Inquiry Report, Canberra, 2011, p 332.

vii Productivity Commission, Disability Care and Support, Report no. 54, Final Inquiry Report,

Canberra, 2011, p 728. viii Jenny Macklin and Jan McLucas, ‘National Disability Insurance Scheme Update 24’, 15 October 2012, available online at: http://www.ndis.gov.au/talking-about-ndis/sign up/previous-ndis-updates/

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