Joint Standing Committee on the National Disability Insurance Scheme
e Level 10, 213 Miller Street, North Sydney NSW 2060
e PO Box 7B5, North Sydney NSW 2059 nP 02 9280 4744 F 02 92804755 ni pete vi ag ene nu ia www.carersnsw.org.au
28 February 2022 Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600
Carers NSW welcomes the opportunity to provide a submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) inquiry into the implementation, performance and governance of the NDIS. This submission will focus on the need to improve integration between service systems, increase support to people with disability outside of the NDIS and their carers outside of the NDIS, as well as the need to immediately address NDIS plan cuts eroding carer confidence in the Scheme to ensure that people with disability and their carers can access supports they need, when they need them, enabling optimal outcomes for both parties.
The content of this submission draws heavily on the Carers NSW submission, developed on behalf of the National Carer Network, in response to the National Disability Strategy Position paper, as the submission highlights a number of ongoing issues in the implementation of the NDIS, including access to residual disability supports, supports for carers, integration between the NDIS and other service systems, and data and information sharing.
Carers NSW is the peak non-government organisation for carers in 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.
For further information, please contact Senior Policy and Development Officer
Yours sincerely,
Elena Katrakis CEO Carers NSW
Introduction
Carers NSW thanks the Joint Standing Committee for the opportunity to provide feedback on the implementation, performance and governance of the NDIS. 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. Carers NSW recognises that not all people with disability receive informal support or would identify with having a ‘carer’. However, many 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.
Carers often play a key role in supporting the optimal participation and engagement of people with disability in their home and community life.
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. Furthermore, recent introduction of legislation without thorough consultation and unexpected cuts to NDIS funding for individuals has eroded confidence in the ongoing ability of the NDIS to meet participant and carer needs.
Drawing on the Carers NSW submission, developed on behalf of the National Carer Network, in response to the National Disability Strategy Position paper, this submission will highlight the need to improve integration between service systems, including improving clarity and accountability in relation to service system boundaries and to immediately address the inadequacy of disability supports available to those ineligible for the NDIS to ensure that the needs of people with disability and their carers are met. This submission will also highlight the need to urgently address recent cuts to NDIS plans to ensure the sustainability and success of the scheme and minimise any additional strain on carers to cover increasing service gaps.
Clarifying roles and responsibilities
The introduction of the National Disability Insurance Scheme (NDIS) was a monumental accomplishment for people with disability, their families and carers. However, by shifting the bulk of responsibility for disability policy and service provision from the state and territory governments to the Commonwealth Government, the rollout of the NDIS has created confusion and stalemate in a number of areas where it is not clear which level of government should be responsible for ensuring supports are available and accessible. In NSW, where limited residual disability and carer supports have been maintained, this is acutely
The recent COVID-19 pandemic has only highlighted issues created by the lack of clarity around Commonwealth, state and territory government responsibilities, with vastly different responses across different jurisdictions and considerable confusion and contradiction between Commonwealth Government directions and those provided by Premiers and Chief Ministers. The recent introduction of the Disability Gateway, which is currently out to tender, has further raised questions about the ongoing expectations of state and territory governments to provide direct services as well as service navigation supports to people with disability.
Responsibility for supporting people with disability ineligible for the NDIS
Approximately 1.35 million, or 1 in 6 people in NSW, report living with a disability, however, as at 30 June 2021 only 156,646 people with disability in NSW were receiving supports through the National
Disability Support Systems Post-NDIS Transition
The National Disability Insurance Scheme (NDIS) 4 While the NDIS is intended to support only those with significant and permanent disability, the 2018 SDAC estimates that 451,700 people in NSW are living with a severe or profound core activity limitation, meaning that approximately 300,000 people with severe disability in one or more domains are not receiving support through the NDIS.
For these individuals, as well as the remaining almost 900,000 people with reported disability in NSW, there is very limited support available following the roll-out of the NDIS.
With all states and territories now transitioning or fully transitioned to the NDIS, responsibility for supports for people with disability who are not eligible for the NDIS must be addressed.
While some states and territories have put plans in place or extended existing arrangements to ensure that people with disability outside of the NDIS are adequately supported to access both mainstream and specialist disability services, in other jurisdictions such as NSW, residual resourcing to ensure the inclusion and support of people with disability is limited.
As the Disability Royal Commission has highlighted, many mainstream service systems which are within the remit of state and territory governments, such as health, education and housing, continue to exclude and discriminate against people with disability and their carers. For example, housing has been highlighted as a key issue for people with disability and their carers in WA, where a lack of information and services to assist people with disability in identifying housing options and a shortage of accessible private rental properties indicate the need for additional State Government action to increase the inclusiveness of mainstream services 5.
In NSW, despite an anticipated 50% increase in students with disability accessing public schools, planning for inclusion remains inadequate even for current school populations 6 Further, in a recent review of before and after school care (BASC) programs in NSW, disability inclusion was not a stated priority, despite the difficulty many parents of children with disability report in accessing these services, and the subsequent implications for children’s outcomes and parents’ capacity to remain in paid employment 7.
The additional pressures and disruptions caused by the COVID-19 pandemic have only exacerbated the issues people with disability have experienced in accessing appropriate education and housing, and as in other areas where formal services fall short of need, carers have in many cases stepped into the gap, often to an unsustainable extent.
Inconsistency between states and territories in the delivery of specialist disability and community care services to people with disability who are not eligible for the NDIS has also been continually highlighted especially in NSW, where, in the transition to the NDIS, a number of State-funded disability support programs and carer support programs were rolled into the NDIS, but not replicated within it.
Carers NSW has heard from carers of people with disability
“… we don’t get any NDIS. So I\nhave to pay someone every\nfornight just to come and be a\ncompanion to my son for the\ncouple of hours that used to be\nfunded before. And that funding\nis gone… I don’t know where the\nmoney has gone to, but we’ve\nlost it… He used to come every\nweek, but now it’s cut back too,\nbecause we have to pay for it.”\n For many carers, this means they have no choice other than \nto engage in highly psychologically demanding advocacy, or \nto provide or fund this support themselves, impacting heavily \non the carer’s own health and wellbeing.
The Safe and Support at Home (SASH) program operating within the NSW Ministry of Health Out of Hospital Care Program offers the only direct community care services Carers NSW is aware of, to under 65s in NSW not eligible for the NDIS. SASH offers time-limited support to patients being discharged from hospital who may be at risk of an avoidable admission and people who are accessing Local Health District (LHD) community health or out-patient services. While SASH packages may be repeated, it is not clear whether this support can be provided indefinitely, or only as an interim solution, until another funding source for supports can be located and secured.
Carers NSW is not aware of the volume of clients serviced by SASH or the level of ongoing demand, but has previously urged the NSW Government to continue funding this program as an important safety net for the many people with disability who are unable to access NDIS support. However, Carers NSW has recently heard from stakeholders that the services available through SASH are not sufficient for meeting the needs of persons requiring ongoing, significant levels of support in the home and community who are deemed ineligible for the NDIS, in some cases delaying hospital discharge or resulting in indefinite hospital admissions.
Other states, however, such as Victoria continue to provide ongoing direct supports to people with disability outside the NDIS.8 While NDIS Local Area Coordinators (LACs) were intended to provide ongoing support and referral to people with disability who were not eligible for the NDIS, in many areas, the significant volume of NDIS related planning and plan implementation work has taken priority, with few resources for LACs to support people with disability outside of the NDIS.
Additionally, Information, Linkages and Capacity building grants are not intended for the provision of direct supports. While many aim to improve the inclusion of people with disability within mainstream services, they do not meet the current gap in direct supports experienced those with disability outside of the NDIS and their carers.
Federal Ministers and agencies9 continue to argue that state and territory governments are responsible for providing continuity of support to people outside of the NDIS, however while state and territory governments differ in their response to this expectation, direct support for large numbers of Australians with disability and their carers varies widely. This disparity will only become more apparent as the Disability Gateway project commences, as its expectation of providing a central
Improving intersections between service systems
Many carers of people with disability receiving supports through the NDIS have reported to Carers NSW significant difficulties obtaining an acceptable outcome where support needs arise at the interface of two different service systems, such as health and disability services, especially 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 Administrative Appeals Tribunal, 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) 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 they are required to advocate so heavily to get the formal services they need, while not receiving any service in the meantime. While the Government has supported the Tune Review’s recommendation to clarify service boundaries, concerns remain that these issues will continue.
Carers NSW commends the recent acknowledgement by the DRM of the responsibility of all governments to coordinate services to support prompt discharge from hospital for NDIS participants and agreement to consider actions to enhance coordination and information sharing between agencies and jurisdictions across the health sector. Carers NSW also commends the DRM on their agreement to continue to work to develop options to improve the supply of affordable and appropriate mainstream housing and NDIS funded accommodation for people with disability, including the acknowledging the importance of engaging the relevant Housing Ministers in each jurisdiction.
Coordinated Approach Needed
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 to work together effectively in order to clarify boundaries between the NDSI 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 NDIS, carers have also faced increasing difficulty accessing support to continue in their caring role. Inconsistent residual disability supports and investment in carer supports across states and territories have meant that many carers of those ineligible for the NDIS have been unable to access carer focused supports. Furthermore, despite many carer support programs being rolled into the NDIS, the term ‘respite’ was intentionally omitted from NDIS language until it was recently reintroduced to the Price Guide in late 2019. Carers of those who are receiving supports through the NDIS 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 the new Carer Gateway will provide some support to carers through counselling, coaching, carer directed supports and emergency respite, it is intended that established service systems, including the disability service system, will continue to provide ongoing support for carers, including planned breaks from the caring role. The AAT, in a number of hearings related accessing carer supports through the NDSI$ 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 of all levels of government in providing carer-specific supports to ensure that carers can access the support that they need, and continue in their caring role.
Accessible guidance on responsibilities
Current publicly available information on the roles and responsibilities of different levels of government in regards to supports for people with disability who are not eligible for the NDIS is limited, vague and legalistic. For carers who are supporting people with disability to navigate complex, disjointed mainstream services and supports that are not adequately equipped to support people, this often means that it is difficult to determine who is responsible for providing the support needed. Furthermore, complicated redress pathways create another level of complexity that people with disability and their carers must navigate to access the appropriate support.
The Carers NSW 2018 Carer Survey found that since the rollout of the NDIS in 2016, over two thirds of respondents caring for an NDSI participant in NSW and almost half of respondents caring for a person under the age of 65 who was not accessing the NDIS had experienced an increase in time spent organising supports for their care recipient.$ Further, many carers have reported to Carers
Improved data collection and sharing
In order to ensure that the needs of people with disability and their carers are met, adequate data must be collected and analysed to enable Government and Policy makers to identify ongoing and emerging issues as well as gaps in services. However, Carers NSW has concerns that current data collection on a range of domains is limited, not adequately shared and therefore does not enable a full understanding of the experiences and needs of people with disability and their carers.
Current national surveys that collect data on people with disability and their carers are infrequent and limited in their depth of information. The Survey of Disability, Ageing and Carers (SDAC), while focusing on people with disability and their carers is conducted every three years and the Census is conducted on a 5 yearly basis and does not captured nuanced issues for people with disability or carers. Furthermore, the cessation of the Disability Services Minimum Data Set (2019) has seen a reduction in the amount of data collected about the service use of people with disability outside of the NDIS and the NDIS Participant and Family and Carer outcome measures do not adequately capture enough data to report on all aspects of participants and their carers lives.
Limited data sharing between levels of government and different government agencies creates further difficulties in identifying and monitoring intersectional issues, such as older people with disability. Recent comments made by the minister for the NDIS, the Hon. Stuart Robert MP.,18 in regards to the limited collection or coordination of state and territory disability information at a federal level during COVID-19 raises greater concerns about the limited availability of nationally collected and consistent data on people with disability, especially those who are not eligible for the NDIS.
With no Department dedicated to disability policy and services in NSW there is little opportunity to collect coordinated data on the experiences and needs of persons with disability and their carers in NSW, which has been further highlighted by the significant challenges experienced by people with disability and their carers during recent crises.19 It is therefore imperative that federal and state governments coordinate to collect data on the experiences of people with disability and their carers
Long term viability and success of the Scheme
Maintaining carer confidence in the NDIS
Carers NSW has recently heard from carers of NDIS Participants, that the person they care for has experienced cares for her daughter significant unexpected and unexplained cuts to their NDIS who has autism, and plans. Carers NSW has previously on a number of occasions raised concerns about the inadequacy of NDIS Plans, the lack of plan increases with increases to prices in the NDIS price guide and the subsequent impact on carers, who are being required to fill growing gaps in support.
Additional, unexpected plan cuts are likely to only exacerbate the strain on carers to fill these gaps and jeopardise the sustainability of caring arrangements. told Carers NSW that a number of other parents of children with autism living nearby had reported to her similar experiences. reported that this is placing significant pressure on these families and carers, as well as the children they care for.
Additionally, sudden and unexpected plan cuts have continued to erode confidence in the Scheme, with many carers reporting increasing anxiety about the future, fearing that their care recipient’s eeds may not be met into the future by the NDIS, especially where the carer is ageing and unable to
- Provide support indefinitely.
Carers NSW previously highlighted the significant, detrimental impacts of erosion of trust in the Scheme for carers with this Committee in relation to the proposed introduction of Independent Assessments.22
Carers NSW believes that these cuts must be immediately suspended, with a thorough investigation into recent plan cuts to better understand the reasoning for these cuts, as well as to ensure that NDIS plans, especially those that have been significantly reduced, are adequately meeting participant and carer needs in relation to reasonable and necessary supports. This is particularly pertinent in cases where the reasoning for plan cuts is that previously funded supports will be ceased as these supports should be considered “parental responsibility” or where supports were deemed “not value for money”.
Carers NSW has previously highlighted the need for additional support for carers of children with disability, whose care needs exceed “parental responsibility” in order to provide carers with a break from their caring role, promoting optimal health and wellbeing and sustaining the caring role.23 While Carer Gateway can provide some short-term planned or emergency respite for carers of NDIS participants, it is expected that the NDIS will meet carer’s needs in relation to ongoing breaks from the caring role. Carers NSW, as a provider of Carer Gateway supports in NSW has experience significant challenges with supporting carers of child NDIS participants in these situations due to limitations of the Carer Gateway model, and an unwillingness of the NDIA to provide this support, resulting in a number of carers presenting in crisis.
Additionally, Carers NSW has concerns that where supports may be deemed ‘not value for money’, the impact of removing these supports on informal carers has not been adequately considered, especially the economic and wellbeing impacts of their potential withdrawal from the labour force to provide this necessary care. Carers NSW believes that where the NDIA may have concerns the cost or value of funded supports, this should be raised with the participant and their carer, with an opportunity to discuss participant and carer needs, as well as explore alternative models or types of support which may appear to provide more value but have minimal impact on a participant’s access to reasonable and necessary supports through the NDIS.
Carers NSW believes that in addition to further investigation of recent plan cuts, where reductions in NDIS plans have already occurred, there should be an immediate review of a participant’s available funding and current needs, including the needs of their carer. This will ensure that any required funding that has been removed is restored and that any reduction in funding has not created an overreliance on informal carers that is likely to lead to unsustainable caring arrangements or worse outcomes for the participant and their carer.
Conclusion
Carers NSW again thanks the Committee for the opportunity to provide a submission on the implementation, performance and governance of the NDIS. Carers NSW believes that in order to ensure the ongoing sustainability and success of the Scheme, urgent action is needed to address ongoing and widening barriers to support placing additional strain on carers that jeopardise the caring, and in some cases living, arrangements Ensuring adequate support within and outside of the NDIS, is likely to see improved outcomes across a range of domains for people with disability and their carers, both now and into the future.