Submission from Carers NSW

Date: 17 May 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 Standing Committee on Community Affairs (the Committee) in response to the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 [Provisions] (the Bill). Carers NSW developed this submission with input from Carers ACT, who endorse this submission.

Carers NSW believes that the NDIS Review and associated reforms provide a significant opportunity to improve the disability supports available to people living with disability, their families and carers. However, we believe that greater focus on enabling and improving support for carers must be embedded in the Bill. Additionally, we would like to highlight concerns about the high level of uncertainty created by the Bill, with many amendments reliant on forthcoming National Disability Insurance Scheme (NDIS) rules and legislative instruments that have not yet been developed, and the potential impacts of this on the confidence in and engagement with the scheme.

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.

Thank you for accepting our submission. For further information, please contact Melissa Docker, Senior Policy and Development Officer at or on

Yours sincerely, Elena Katrakis CEO Carers NSW

Introduction

Carers NSW welcomes the opportunity to respond to this important Bill and recognises the significant opportunity to address a number of long-standing issues with the National Disability Insurance Scheme (NDIS). While the NDIS has been transformative for people living with disability, their families and carers, Carers NSW understands that for many family and friend carers, a lack of appropriate recognition and inclusion has created unique challenges for both their caring role and their own individual support needs.

Carers NSW made a number of submissions to the NDIS Review Panel and was pleased to see a broad range of recommendations aimed at addressing challenges and barriers associated with accessing specialised disability supports for those eligible and ineligible for the NDIS and their carers. However, as highlighted by Carers NSW throughout our submissions to the NDIS Review, Carers NSW has significant concerns that despite the high level of engagement of family and carers with the NDIS Review, with carers quoted throughout the final report, limited additional recognition and support for carers was recommended by the NDIS Review Panel or proposed through this Bill. Carers NSW believes that in order to improve NDIS experiences for participants and carers, there must be greater focus on embedding carer inclusion and support in the Bill.

Additionally, Carers NSW also has concerns about proposed amendments that enable the creation of new NDS Rules and legislative instruments before further information or guidance about these complementary elements are provided. Carers NSW urges caution in this approach as it is likely to create a sense of uncertainty that will further erode confidence and trust in the NDIS. It will also likely increase psychological distress for participants and carers who are concerned about the impacts of reforms on their access to the scheme and supports.

Background

Carers NSW believes in the importance of autonomy and self-determination for people with disability and is supportive of policy and practice that facilitates their independence and meaningful participation in community life. Carers NSW has fully supported the transition towards more person-centred approaches to service delivery for people living with disability and believes this human rights approach to disability support continues to enable people living with disability and their families and carers to have more choice and control over their life and wellbeing, including their inclusion and participation in society.

We acknowledge that not all people living with disability receive informal support or would identify with having a ‘carer’. However, current data captured by the Australian Bureau of Statistics (ABS) indicates that approximately 80% of the 2.5 million people with disability in Australia who needed assistance received it from informal supports, just over half required this assistance and support on a daily basis. People living with disability needing assistance were most likely to receive informal support with communication, mobility, and reading or writing tasks.

Carers often provide significant support to the person(s) they care for; from support with nutrition through provision of shopping and assistance with meal preparation, to support with employment and income security, through provision of practical support with administration and finances, and support with decision making. Carers also often support the people they care for to access specialised and mainstream services and supports, such as the NDIS supporting with service navigation, coordination of supports and advocacy. The support provided by carers is complex and varied, influenced by the

Recognising and Supporting Carers through the NDIS

Carers NSW believes that given the invaluable role of carers in the lives of their family member or friend living with disability, appropriate consideration should be given to improving service experiences and support for carers in the design and implementation of disability support. This also aligns with Australia’s Disability Strategy 2021-2031, Policy Priority 3: The role of informal support is acknowledged and supported of Outcome Area: Personal and Community Support.

Recognising and supporting carers through the NDIS

Carers NSW has significant concerns that there is limited reference to carers within the new Bill, with references to carers only found in the explanatory memorandum in the context of examples of malicious practice, such as failing to maintain contact with the NDIA or provide requested documents. Carers often play a significant role in the network and continuum of supports of people with disability, complimenting NDIS services and reducing reliance on formal supports. However, many carers report to Carers NSW that they are not recognised or included in the planning and delivery of NDIS services and supports. Where carers are included, their needs are often not considered or addressed, even where these needs intersect with those of the person they care for. This often results in NDIS plans that do not include adequate funding for support aimed at enhancing or sustaining informal caring arrangements, such as carer education and training and regular breaks from the caring role or respite.

The Carers NSW 2022 National Carer Survey found that of respondents who provided support to somebody accessing the NDIS, 1 in 8 were not included in planning and decisions about services and approximately 1 in 3 (31%) were not provided with the information they needed (Figure 1). The survey also found, that in relation to carers’ own needs, more than half (57.5%) were not asked about their needs as a carer. Subsequently, almost half (45.2%) reported that services did not meet their needs and approximately 1 in 3 (34.9%) reported that services did not provide them with a break from providing care.

Figure 1. Carers’ experiences engaging with NDIS supports

	Strongly disagree	Disagree	Neither agree nor disagree	Agree	Strongly agree
Asked about my needs as a carer	7.8	9.7	11.4	6.3	\
Involved in planning and decisions about services
Provided with all the information I needed
Gave me a break from providing care
Met my needs as a carer

Where carers are not included in planning and decisions about services or their needs are not considered or met, this can have significant impacts on their health and wellbeing. The 2022 National Carer Survey found that compared to the whole sample, carers supporting someone accessing NDIS

and poorer health outcomes (Figure 2).

Figure 2. Health and wellbeing outcomes for carers of persons with disability under 65 accessing NDIS compared to whole sample.

Wellbeing level 56% NDIS carers 75% 48% All carers 52% NDIS carers General reported high/very high 57% All carers population psychological distress

                                                       reported poor or fair health
           66% NDIS carers
           56% All carers           56% NDIS carers
                               49% All carers
                      reported social isolation

Since the formal rollout of the NDIS in 2013, Carers NSW has responded to 37 consultation opportunities regarding the Scheme or its related programs, each time raising concerns regarding the appropriate recognition, inclusion and support of family and friend carers who are navigating this system with or on behalf of the person they care for. The findings of a number of previous reviews of the NDIS have also highlighted the need to improve support for carers and families of NDIS participants, especially in relation to service navigation and respite, and greater support for parents of children living with disability.

Despite this, Carers NSW has concerns that limited actions have been taken to improve carer inclusion and support to date. Inadequate support for carers through the NDIS jeopardises the long-term sustainability of informal care and ultimately, the sustainability of the NDIS, which relies heavily on the informal care provided by family and friend carers.

In relation to the new Bill, Carers NSW has significant concerns that the newly proposed definition of NDIS Supports does not explicitly include supports aimed at building the capacity of family and carers to provide care or maintaining informal caring arrangements. While Carers NSW recognises that these types of supports may fall under Schedule 10, (a)(i) as supports that enable people living with disability to live and be included in the community, concerns remain that where supports for carers that align with participant goals are not explicitly stated, there remains confusion around whether they can be funded under the scheme and are less likely to be considered or included in NDIS plans and budgets as such.

This was previously evidenced by the initial decision to exclude the term “respite” from the NDIS Price Guide when the NDIS was rolled out. Following this decision, many carers reported to Carers NSW that they were advised by NDIS staff and Local Area Coordinators (LACs) that respite was not able to be funded through the NDIS. The re-introduction of the term “respite” to the NDIS in relation to Short Term

Accommodation

Accommodation has seen increased inclusion of this support type, however carers report that they are still unable to access other forms of respite, such as in-home respite, that provide meaningful breaks from the caring role for the participant and carers as these are not explicitly included service categories.

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.

Enabling a family-centred approach to improve participant and carer outcomes

Many carers provide care to more than one person in their household accessing NDS services, or may be also accessing NDIS services themselves. Carers NSW is concerned that more broadly, the Bill does not appear to make amendments that enable a family-centred approach, that assesses or provides support to families as a unit, even where this may be beneficial to families, kinship networks, families of choice or the delivery of the scheme.

While Carers NSW recognises the importance of individualised supports that enable participants to achieve their goals, in many instances, streamlined or integrated supports that meet the needs of multiple family members may support aligned or common goals, such as where two adolescent siblings accessing the NDIS would both like support to build and maintain independence with activities of daily living within the same household. Additionally, where a carer is caring for multiple NDIS Participants, consideration of how participant plans intersect to enable carers to access adequate breaks from the caring role is likely to support greater access to meaningful breaks and improved outcomes for participants and carers. Carers NSW recommends that the definition of NDIS supports and the proposed new assessment approach be reviewed to ensure that these enable a family-centred approach where appropriate.

Reducing assessments and safeguarding against undue exit from the Scheme

Since the establishment of the NDIS, carers have reported to Carers NSW significant psychological and financial impacts of coordinating, facilitating, and funding frequent, duplicative assessments and reports for the person they care for to access the scheme or justify their ongoing need for funding. While Carers NSW has previously raised concerns about these impacts, the new Bill proposes even greater powers for the NDIA to request information and assessments to determine ongoing eligibility to the scheme. Additionally, amendments will also enable participants to be exited from the Scheme where they do not provide information or assessments within a proposed timeframe. Where participants are exited from the scheme, this is likely to cause significant distress for participants and carers, and place significant strain on carers to fill service gaps.

Carers NSW acknowledges that there is some scope within the Bill for discretion where there may be delays accessing assessments or reports due to wait times. However, Carers NSW has concerns that the significant wait times for many assessments due to health and allied health workforce shortages, especially in regional, rural and remote areas, may result in participants being unduly exited from the scheme. These changes are also likely to exacerbate inequities, as those with the means to do so may be able to access private services or pay additional fees to have their assessments fast tracked, further delaying assessments for participants with lower means. Carers NSW believes that these provisions should be reviewed to ensure that NDIS participants and carers are adequately safeguarded against being inappropriately exited from the scheme where they experience delays that impact their ability to provide requested information and assessments.

Minimising uncertainty and maintaining confidence in the NDIS

Carers NSW has concerns about the nature of many of the elements of the Bill which create powers for the NDIA or Minister to establish new NDIS Rules or legislative instruments to implement intended reforms.

Carers NSW acknowledges that there are some benefits of the utilisation of rules which may enable a more agile scheme as they can be more easily updated or changed to better meet participant needs or address emerging issues without legislative process. Additionally, Carers NSW acknowledges that there are processes in place for the establishment of NDIS Rules and legislative instruments that provide safeguards and ensure consultation with participants and carers, as well as oversight of rulemaking. However, Carers NSW has concerns that at this time it difficult to comment on many of the proposed changes that the Bill will enable, as drafts of forthcoming rules or instruments have not been provided. Additionally, there are concerns that rules could be changed more easily than legislation following establishment if there is a shift in government priorities, which could negatively impact on participant and carers access to services and supports. This lack of insight into new rules and instruments, paired with the perceived risk of changes to the NDIS have created high levels of uncertainty and concern for many NDIS participants and carers, as well as the sector more broadly.

Carers NSW believes that caution must be taken in creating powers to establish rules and instruments to maintain trust in the NDIS and minimise potential distress for NDIS participants and carers. Where possible, the Government or NDIA should provide an outline of intended rules and instruments before legislation is passed to enable genuine consultation on the NDIS Bill, its intent and implications.

Conclusion

Carers NSW again thanks the Committee for the opportunity to respond on this important matter. The design and implementation of the NDIS has been transformative for many people with disability, their families and carers and Carers NSW wishes to acknowledge the work of the Australian Government and NDIA over recent years to improve participant and carer experiences of the NDIS. Carers NSW believes that this Bill provides a timely opportunity to embed greater and recognition and support for carers within the NDIS to improve the outcomes and experiences for people with disability, their families and carers. However, Carers NSW believes that far greater detail and consultation is needed in the development of the Act and associated rules and legislative instruments to support ongoing confidence and trust in the Scheme.