NDIA Accountability Project

Concerns regarding carer involvement in NDIS processes

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Carers Queensland Inc.

Submission to the Senate Standing Committee on Community Affairs - National Disability Insurance Scheme Bill 2012

January 2013

Submission

Senate Standing Committee on Community Affairs –

Title: National Disability Insurance Scheme Bill 2012

Date: January 2013

Author: sarah walbank, policy and research officer
Approved by: debra cottrell, chief executive officer

####### cars queensland inc. ######## 15 abbott street ######### camp hill 4152 ########## queensland ########### phone: (07) 3900 8100 ############ website: www.carersqld.asn.au ########### © carers queesland inc. 2013

senate standing committee on community affairs ‐ 2 national disability insurance scheme bill 2012

Carers Queensland Inc.

Family carers provide unpaid care and support to family members and friends who have a disability, mental illness, chronic medical condition, terminal illness or are frail aged.

The activity and impact of providing care is best understood in terms of its context; as a relationship between two or more individuals, rooted in family, friendship or community. Caring is a role rarely chosen by most, nor does it discriminate. Children and young people, people of working age and older people, people with a disability, people who identify as culturally and linguistically diverse, indigenous Australians and those living in rural and remote Queensland provide care to a family member or friends on a daily basis. For some caring is a short term commitment whilst for others, it is a role that literally lasts a lifetime.

Carers Queensland Inc. is the peak body representing the diverse concerns, needs and interests of carers in Queensland. Carers Queensland believes that all carers regardless of their age, disability, sexuality, religion, socioeconomic status, geographical location or their cultural and linguistic differences should have the same rights, choices and opportunities and be able to enjoy optimum health, social and economic wellbeing and participate in family and community life, employment and education like other citizens of the State. Carers Queensland’s mission is to improve the quality of life of all carers throughout Queensland.

We aspire to provide an independent platform from which to advance the issues and concerns of carers and believe our knowledge and expertise in carer issues means that we are able to provide the Commonwealth Government with relevant and trusted information that will ensure that the needs of carers will be recognised, respected and acted upon. Our ambition is to ensure that carers are recognised and included as active partners in the development of government social policy and service delivery practices.

INTRODUCTION

Carers Queensland welcomes the opportunity to provide meaningful input to this Senate enquiry. We believe we are in a unique position to consult with, and advocate on behalf of, the 494,2001 carers living in Queensland, many of whom support and care for children and adults with disability.

This submission reflects the concerns of Queensland’s carers, those citizens who provide unpaid care and support to family members and friends with a disability or impairment. This submission has been informed by consultation with Queensland’s carers, the annual C3 (carer) Consultations and Australian and international research.

Senate Standing Committee on Community Affairs ‐ 3 National Disability Insurance Scheme Bill 2012

DISCUSSION

Carers Queensland is pleased to note the acknowledgement of, and respect for carers in the draft legislation.

Notwithstanding, Carers Queensland is of the opinion that the draft legislation ignores the rights of carers as enshrined in both Commonwealth and State/Territory carer recognition legislation and does not seek to advance the social and economic inclusion of carers. In support of our position we provide the following comments.

Carers Queensland is concerned that the discourse and substance of the draft legislation does not reflect the integral role of carers in the lives of the people they care for and support and their significant contribution to the disability sector and Australian society.

The underpinning philosophy of the draft legislation that the provision of adequate support to a person with disability automatically ensures adequate support for the carer may be true in many situations but it fails to reflect the aspirations, needs, issues and concerns of one party to the relationship; those of the carer. The reference to carers and the people they care for as a dyad with similar, if not the same, goals and aspirations is an example of how carers needs and issues have been de‐personalised and objectified in‐common2 with people with disability.

The failure of the NDIS draft legislation to provide carers with the right to an independent determination of need and the integration of the carer’s issues into the participant’s assessment and planning processes, and reflected in the case file data permits the further abstraction of carer issues and will serve to ‘make’ carers, through their necessary reliance on the NDIS, passive, acquiescent subjects who co- operate in their own subordination.

These actions mitigate the principles of the Carer Recognition Act 2010 and the Statement for Australia’s Carers and is not in the spirit of the Productivity Commission’s recommendations. Furthermore, the disparity between the aged care and disability legislation with respect to how carers are acknowledged, respected, and most importantly consulted, creates an undesired dichotomy; one which only services to diminish the value of carers in Australian society.

RECOMMENDATIONS

Carers Queensland welcomes the release of the NDIS Rules for further explanation and clarification of many issues that are under‐developed or not yet specified in the draft legislation and the opportunity to make a further submission.

Carers Queensland recommends the following amendments to the draft legislation:

  • the definition of a carer to reference to the Carer Recognition Act 2010 and the State and Territory carer recognition legislation (Section 9)

  • and the right of carers to be acknowledged and treated as an individual with their own aspirations within and beyond their caring responsibilities

  • the consistent use of terminology when referring to carers and families

  • the inclusion of carers as the third option when determining who to appoint plan management responsibilities to when the participant is unwilling or unable to nominate (Section 43 (4))

  • an expansion of the definition of ‘parental responsibility’ (Section 75) to include the diversity of relationships in which an adult provides appropriate care, support and guidance to a child with disability

  • clarification of what is meant by the phrase “what is reasonable to expect families, carers, informal networks and the community to provide”, with particular reference to the definition of ‘community’

  • the right for carers to have an independent assessment of their circumstances including their ability and/or willingness to continue to provide care and support, their aspirations and goals and their economic and social inclusion

  • to enable carers and families of adults to access assessments and interventions that would strengthen their capacity to continue providing support where a potential crisis is imminent and where the carer/family may have to or are considering relinquishing the support of the person they care for to the State

  • that the NDIS Rules contain policies with regard to the identification of potential conflict between the participant and the carer/family with regard to the planning processes and suitable management strategies are incorporated into the operational protocols

COMMENTS

Of particular concern are the following issues:

Carer Recognition

  • carers are not mentioned as a group of people who, potentially, could benefit from the NDIS (Objects and Principles)

  • no reference is made to the Carer Recognition Act 2010 or State or Territory carer recognition legislation (Definitions)

  • the recognition of carers, their role and the right to be treated as an individual with their own aspirations and needs within and beyond their caring role is not embedded in the draft legislation

  • that the definition of those with parental responsibility (Section 75) is very narrow and does not embrace the diversity of caring relationships1

  • there is no acknowledgement of carers as partners with other providers in the delivery of support and assistance despite their invaluable contribution

  • carers and families appear to be variously referred to as ‘informal supports’ or the person with disability’s ‘personal context’ (Section 33) diminishing the role of carers and families

Discriminatory Principles and Practices

Carers Queensland is of the opinion that the draft legislation discriminates between two groups of carers; that is carers of children and the carers of adults. The provision of support that “is likely to, strengthen and build capacity of families and carers to support participants who are children” (Sections 25 and 27) suggests that carers of children are more worthy of NDIS assistance than carers of an adult with disability.

Further: 1. this implies that carers and families of eligible children have been offered and participated in an assessment of their capacity, skills or knowledge in relation to the participant’s disability and early intervention support needs, a service not available to carers of adults with disability and that

2.  a measurement tool will be introduced by which to ascertain the carer's capacity and the sustainability of their support and that

1 The Carer (Recognition) Act 2008 (Qld) recognises grandparents who assume and have responsibility for raising their grandchildren as carers

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Participant Plans

In Carers Queensland’s opinion the processes of developing and articulating the participant’s plan is unclear and that the use of various terminology creates inconsistent interpretation and some confusion (Sections 31 and 33).

The draft legislation:

  • makes no explicit reference to how “the environmental and personal context” of the participant’s living arrangements is to be conducted and who should be involved

  • makes no explicit reference to views of carers or family in the planning process (rather it refers to “personal context” of the participant’s living arrangements)

  • does not provide for a separate assessment of the carer’s goals, aspirations and needs beyond their caring role and/or their capacity to sustain their caring responsibilities or commitments

  • whether carers will be offered the opportunity to contribute to the process, independently of the person they care for and support

  • makes no reference to policies and processes for managing potential conflict between the carer/family and the participant in relation to the planning process

  • makes no explicit reference as to how the carer and/or informal support provided to the participant will be measured or its sustainability determined

Reasonable and Necessary Supports

Carers Queensland notes that the “funding of support takes account of what it is reasonable to expect families, carers … to provide” (Section 34 (e)) and that Section 35 refers to a protocol for determining what supports is considered reasonable and necessary after a determination of what is reasonable to expect of families, carers and others.

Plan Management and Nominees

Without reference to the NDIS Rules we are unable to provide a more detailed interpretation of how carers will be involved in these two processes. Notwithstanding, the two clauses speak of a ‘determination’ of the support provided and the sustainability of the carer’s commitment without an independent assessment of the carers needs and aspirations.

Carers Queensland can see of situations where conflict can arise between the expectations of the NDIA by the participants and the carers, inflamed by the underpinning policies and ‘assessment/planning’ practices of the NDIA.

Section 43 refers to the appointment of plan managers. Carers Queensland is concerned about two issues:

1.  carers can be appointed as plan managers by the NDIA without reference to any specific consultation re their willingness or competencies to accept the responsibility (Section 43 (1) (e)) and that

2. where the participant cannot or will not nominate a plan manager (Section 43 (4)) the legislation specifies that only registered plan management providers or the NDIA itself can assume plan management responsibilities. This completely disregards the carer who may still be providing a substantial amount of care and support to the participant and who may be willing to assume the responsibility.

1 Australian Bureau of Statistics. (2009). Survey of Disability, Ageing and Carers: Summary of findings. Cat. No. 4430.0. Canberra: Australian Bureau of Statistics. 2 Smith, Dorothy. E., (1990). Texts, facts and femininity. Exploring the relations of ruling. London: Routledge