Level 10, 213 Miller Street, North Sydney NSW 2060
e PO Box 785, North Sydney NSW 2059 nP 02 9280 4744 FG? 9280 4755 nCc are rs N SW contact@carersnsw.org.au nAu st ra li a Carers NSW ABN 45 461 578 B51 ACN 06 277 552 ni www.carersnsw.org.au
16 December 2022
Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100
Parliament House Canberra ACT 2600 ndis .joint@aph.gov.au
Carers NSW thanks the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) (the Committee) for the opportunity to respond to its inquiry into Culture and Capability of the National Disability Insurance Agency (NDIA). This submission will focus on the experiences of family and friend carers navigating the NDIS with or on behalf of the person they care for and the known barriers that impact their adequate recognition and inclusion. The content of this submission draws heavily on a number of prior Carers NSW submissions provided to the Committee in response to inquiries related to planning, the NDIS workforce and the implementation, performance and governance of the NDIS. This submission will again highlight longstanding issues that we believe have acted as a barrier to the meaningful inclusion of family and friend carers accessing 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:
e Bea leading carer organisation in which carers have confidence
e Actively promote carer recognition and support
e Actively support carers to navigate a changing service landscape that will be characterised by ongoing policy reform
e Promote connected community experiences and opportunities for carers that are inclusive of diverse carer groups
e Lead and advocate for carer-specific and carer-inclusive policy making, research and service delivery
e Continue to be a quality-driven, responsive and carer-focused organisation.
Thank you for accepting our submission. For further information, please contact Policy Officer at oron
Yours sincerely,
Elena Katrakis CEO Carers NSW
SUPPORTS ALL CARERS - AN AUSTRALIA THAT VALUES AND SUPPORTS ALL CARERS - AN
Introduction
The Committee’s inquiry into the culture and capability of the NDIA demonstrates the commitment of the Australian Government to address longstanding concerns held by people with disability, their families and carers about systemic limitations of the NDIS. This review offers a unique opportunity for the sector to comment on broad issues related to the governance, implementation and administration of the NDIS which we believe have contributed to continued challenges for people with disability and their carers to access meaningful and necessary support.
Carers NSW commends the Government and the NDIA for their ongoing work to rectify these issues, and we wish to highlight the many consultation opportunities to date where such concerns and the specific implications they have for family and friend carers have been repeatedly identified. Carers NSW sincerely hopes this inquiry will result in long overdue changes to the NDIS that will see carers of people with disability appropriately recognised, included and supported.
About carers
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 recognises that not all people with disability receive informal support or would identify as having a ‘carer’. However, family members and friends are important in the lives of all Australians, and the Australian Bureau of Statistics (ABS), Survey of Disability Ageing and Carers (SDAC) 2018 reports that the majority of Australians with a reported disability who need assistance receive at least some of that assistance from a family member or friend; in many cases, on a daily basis.[1\
The Commonwealth Carer Recognition Act 2010 (the Act) stipulates that carers should be considered as partners with other care providers in the provision of care, acknowledging their unique knowledge and experience; this extends to recognition of the valuable social and economic contribution of carers, and respect for the relationship between carers and the person(s) for whom they care.[2
Similar values are embedded within the National Disability Insurance Scheme Act 2013 where the relationship between people with disability and their families and carers is to be recognised and respected.
The important role of carers in representing the interests and rights of the person they support is also highlighted in Australia’s Disability Strategy 2021-2031,[3] within Policy Priority 3: The role of informal support is acknowledged and supported of Outcome Area: Personal and Community Support. It was further supported by the Review into Disability Advocacy in NSW: A report by the NSW Ageing and Disabilty Commissioner (the Review),[4] which identified the important role of carers in disabiltiy advocacy as well as the positive outcomes for carers that can be achieved through disability advocacy. It is therefore well established and reinforced through numerous legislative and policy instruments that there is a need to improve the experiences families and carers of people with disability, as supporters.
Ongoing systemic limitations and the impacts on carers
The NDIS has enabled many people with disability and their carers to access support for the first time. However, many carers have reported to Carers NSW that the roll-out of the NDIS has created significant barriers to accessing supports, especially for those ineligible for the NDIS, or those accessing support across multiple, intersecting service systems. In addition to larger, enduring structural limitations of the Scheme, the swift and significant reform that has been undertaken by the Government in recent years
- often with limited community consultation - has further eroded confidence in the ongoing ability of the NDIS to meet participant and carer needs.
Access and eligibility
Eligibility and access to the NDIS has been a known and ongoing issue for many people with disability and their families and carers. Approximately 1.35 million, or 1 in 6 people in NSW, report living with a disability,$ however, as at 30 June 2022 only 161,055 people with disability in NSW were receiving supports through the NDIS.$
The NDIS is intended to support only those with significant and permanent disability under the age of 65$ The 2018 SDAC however estimates that 222,500 people in NSW aged under 65 are living with a severe or profound core activity limitation, meaning that almost 61,000 people with severe disability who may be eligible for the NDIS are not receiving support through the scheme. For these individuals, as well as for the remaining almost 500,000 people with reported disability in NSW who are under the age of 65 and do not meet the eligibility criteria for the NDIS, there is very limited alternative support available. Additionally, while those living with disability aged over 65 in NSW may be able to access services and supports through the aged care system, aged care services and supports often do not adequately meet the needs associated with their disability.
Carers NSW has continued to raise concerns about adequate support for people with disability who are ineligible for the NDIS, particularly as family and friend carers are often required to provide care in the absence of formal care services, usually at significant personal cost to their own health and wellbeing and social and economic participation. While we acknowledge work has been undertaken by the NDIA to streamline access and eligibility for people with disability through the introduction of the Participant Service Guarantee and ongoing amendments to the NDIS Act 2013, there remains little clarity about the support options available to people with disability who continue to experience ineligibility. Further, when consulting carers about issues related to access and eligibility, many have also commented that they are not always provided with the opportunity to provide input or express their own needs, or if they are, this information is not necessarily captured or reflected in the participant’s plan. This can be a particular problem for participants who require support with communication, including those with cognitive impairment and those from culturally and linguistically diverse (CALD) backgrounds.
For those who wish to challenge or appeal access decisions made by the NDIA, people with disability, his families and carers are often required to undergo complex, legalistic and highly administrative appeals processes that usually comes at a significant cost to them financially and emotionally. Indeed, data from 2018 highlighted that only 2.4% of cases brought to the Administrative Appeals Tribunal (AAT) were actually heard$ and approximately one in three cases were withdrawn by participants before a hearing had taken place. Carers NSW welcomes the recent introduction of the independent expert review (IER) panel which will aim to reduce the number of cases going through AAT, however it is not
Improving intersections between service systems
As highlighted in previous JSC inquiries, many carers of people with disability receiving supports through the NDIS continue to report significant difficulties obtaining an acceptable outcome where support needs arise at the interface of two different service systems, such as health and disability services. This is especially so where one system (such as health services) is predominantly State managed and funded, and the other (in this case, disability services) is predominantly managed and funded by the Commonwealth.
A number of these cases have been tested in the AAT, for example, in NSW the coverage of people living with cystic fibrosis under the NDIS has been a significant issue, with NSW Health challenging their exclusion from eligibility for the Scheme. The Review of the NDIS Act (the Tune Review)[9] emphasised the need to address these kinds of interface issues by better defining the responsibilities of different levels and parts of government to ensure holistic, streamlined support for people with disability.
Carers NSW acknowledges the work of the Disability Reform Ministers (DRM) (and former Disability Reform Commission) in clarifying the boundaries between the NDIS and other service systems, including the health service system, and the existence of the Applied Principles and Tables of Support (APToS). However, carers in NSW report ongoing difficulties in sustainably supporting the people they care for when the responsibility falls between two service systems, while not receiving any service in the meantime. While the Government has supported the Tune Review’s recommendation to clarify service boundaries,[10] concerns remain that these issues will continue.
Given the complexity in jurisdictional responsibility across service systems, Carers NSW believes a coordinated, whole of government approach is needed to ensure that the needs of people with disability, as well as their carers are met. Carers NSW believes that the DRM should work to clearly identify and outline responsibility and accountability for different departments and agencies, including the NDIA, to work together effectively in order to reduce and overcome service gaps arising from unclear or poorly defined boundaries between the NDIS and other service systems, and ensure streamlined holistic support for people with disability and their carers.
Furthermore, there should be clear guidance for people with disability and their carers around accountability where service systems cannot come to an agreement on responsibility, to ensure that people with disability can access essential supports and that carers are not placed under additional strain to engage in significant advocacy or fill service gaps.
Access to carer-specific supports
With many carer support programs rolled into the NDS, carers have also faced increasing difficulty accessing support to continue in their caring role. Furthermore, despite many carer support programs being rolled into the NDS, the term ‘respite’ was intentionally omitted from NDLS language until it was recently reintroduced to the Price Guide in late 2019. Carers of those who are receiving supports through the NDS have reported difficulty accessing the support they need through the Scheme, including respite, to continue in their caring role and some have reported that the expectation on them to provide care has resulted in reduced funding available for formal supports for their care recipient.
While Carer Gateway provides a range of support to carers through counselling, coaching, carer directed supports and emergency respite, it is intended that established service systems, including the disability service system, continue to provide ongoing that includes planned breaks from the caring role. The AAT, in a number of hearings related accessing carer supports through the NDIS$ and the Tune Review$$ have highlighted the need for better recognition and support for carers through the NDIS as this is in the interest of the person with disability who is likely to have better outcomes if their carer is better supported. Carers NSW believes that all levels of government must negotiate and agree to clear responsibility for carer-specific supports to ensure that carers can access the support that they need, and continue in their caring role.
Strengthening carer recognition and inclusion
Carers NSW believes the NDLS holds the potential to significantly improve the lives of people with disability and their families and carers. While there remains a clear need to improve the structural barriers that inhibit the meaningful inclusion and participation of carers within the NDS, we wish to highlight current measures enacted by the NDIA to rectify these issues. Carers NSW acknowledges the ongoing work of the NDIA to facilitate better collaboration with carers of people with disability, and notes in particular key principles of the Carer Recognition Act (2010) that are embedded with the NDS Act and Operational Guidelines. Carers NSW believes the commitment of the NDIA to uphold the rights of carers while also respecting their relationship to the person they care for, is reflective of shifting cultural attitudes towards family and friend carers.
While these developments are promising, the Carers NSW 2022 National Carer Survey (the Survey)$ found that despite recent improvements, approximately $in 7 ($4.2%, n=2629$ respondents providing support to someone accessing the NDIS disagreed that they were included in planning decisions about services. Furthermore, the Survey$$ also found that while 29% of these respondents agreed they were asked about their own needs as a carer when supporting the person they care for to access the NDS, a majority ($6.9%) disagreed. As such, Carers NSW believes that existing measures aimed at improving carer inclusion and support under the NDS can be further strengthened to support those working within the Agency and Scheme to better recognise and include carers, as well as understand and provide support for their unique needs.
As highlighted in the NSW Carers Advisory Council’s submission to this inquiry, we believe it is important for the NDIA to clarify the specific processes in place that support and facilitate carer inclusion at various stages of service access, particularly in instances where they are providing advocacy for the
Conclusion
Carers NSW thanks the Committee for the opportunity to provide a submission in response to its inquiry into the culture and capability of the NDIA. This inquiry demonstrates an ongoing commitment of the Australian Government to improve longstanding systemic limitations of the Scheme, and to ensure people with disability, their families and carers are adequately supported. While Carers NSW looks forward to changes that seek to address concerns related to governance, implementation and administration of the NDIS, we wish to reiterate the importance of appropriate carer recognition and inclusion at all levels of the Scheme, so that carers can confidently expect to have their needs and rights upheld.
person they care for.15 Furthermore, we believe it is important for the NDIA to have clear guidelines and policies that build the capacity of their workforce to work collaboratively with family and friend carers.