NDIA Accountability Project

Carer recognition and informal caring arrangements within the NDIS

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National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 58

Level 10, 213 Miller Street, North Sydney NSW 2060 PO Box 785, North Sydney NSW 2059 P 02 9280 4744 F 0’2 9280 4755 s contact@carersnsw.org.au Carers NSW Australia Caren NSW www.carersnsw.org.au ASN4S461S788SIACN606277SS2

12 July 2024

Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600 community .affairs.sen@aph.gov .au

Carers NSW welcomes the opportunity to provide a submission to the Senate Standing Committee on Community Affairs (the Committee) in response to the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bi/12024 (the Bill). This brief submission will speak to the same concerns previously raised with the Committee by Carers NSW in relation to this Bill. A copy of this submission is included as an appendix and can be found online through the Committee’s submission page.1

Carers NSW is the peak non-government organisation for carers in New South Wales (NSW). A carer is any individual who provides 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. Carers NSW is part of the National Carer Network and a member of Carers Australia. Our vision is an Australia that values and supports all carers, and our goals are to:

  • Be a leading carer organisation in which carers have confidence
  • Actively promote carer recognition and support
  • Actively support carers to navigate a changing service landscape that will be characterised by ongoing policy reform
  • Promote connected community experiences and opportunities for carers that are inclusive of diverse carer groups
  • Lead and advocate for carer-specific and carer-inclusive policy making, research and service delivery
  • Continue to be a quality-driven, responsive and carer-focused organisation.

Carers NSW commends the Committee for seeking feedback from people living with disability, carers and the sector on these important changes, but stresses that the volume of material to review and the timeframe provided is prohibitive to many stakeholders being able to provide considered, comprehensive and meaningful feedback. Furthermore, as the proposed legislative changes rely on additional policy reform that is yet to be defined, Carers NSW remains concerned that feedback will continue to be limited as there is little indication as to how these changes will work in practice.

Carers NSW stresses once again the need for the Committee and Australian Government more broadly to be proactively consultative and transparent in their National Disability Insurance Scheme (NDIS) policy development and implementation overall. This will support the Australian Government, notably the National Disability Insurance Agency (NOIA), to meet its obligations to “consult carers, or bodies”

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 58

to represent carers, when developing or evaluating care support”2 as a public service care agency under the Commonwealth Carer Recognition Act 2010.

While Carers NSW is encouraged to observe that work has been undertaken to further clarify the role and scope of the Bill, particularly of powers attributed to the Minister for Disability Services and the CEO of the NDIA, including their ability to create and administer NDIS rules, we remain concerned that these powers are still too broad and open-ended and do not provide adequate protections to participants and carers. Carers NSW understands that the Government is taking a staged approach to NDIS reform. However, we believe it is important that proposed changes are presented holistically, so that the disability and carer communities can confidently understand how changes to the legislation, the introduction of other legislative instruments like NDIS rules and the implementation of state and territory based foundational supports (as well as other measures) will be practically realised and integrated.

Beyond the proposed amendments to the Bill, Carers NSW wishes to again reiterate the importance of adequate carer recognition and inclusion within the NDIS and to ensure that ongoing reform to the Scheme reflects the contribution and the needs of family and friend carers. Carers NSW notes in particular, Section 10 of the Bill and wishes again raise concerns regarding appropriate identification of carers. Carers NSW has previously commented on the narrow definition of what constitutes an NDIS support, particularly as it does not explicitly include supports aimed at building the capacity of family and carers to provide care or maintaining informal caring arrangements.

Carers NSW has written extensively on the need for the Australian Government and NDIA to appropriately recognise and protect informal care relationships in NDIS legislation. Where family and friend carers are not adequately supported, they are more likely to report lower wellbeing, higher psychological distress, greater social isolation and poorer health outcomes3 In order to ensure the long-term sustainability of informal caring arrangements, Carers NSW believes that the new Bill must be reviewed to ensure that greater recognition and support for carers is embedded in legislation. This includes reviewing the definition of NDIS supports to include supports that aim to enhance and sustain informal caring arrangements and relationships.

Thank you for accepting our submission.

Yours sincerely,

Elena Katrakis CEO Carers NSW

2 Part 3, Section 8 (2). 3 Carers NSW (2022) National Carer Survey, Unpublished data.