Level 10,213 Miller Street, North Sydney NSW 2060
PO Box 785, North Sydney NSW 2059
P 02 9280 4744 F 02 9280 4755 ~ contact@carersnsw.org.auCarersNSW Can,rs NSW ASN 45461 578851ACN606277 552 Australia www.carersnsw.org.au
1 March 2024
Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100
Parliament House
Canberra ACT 2600
Carers NSW welcomes the opportunity to respond to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) inquiry into the experience of NDIS participants in regional, rural and remote Australia. While the introduction of the NDIS has been an important step in improving access to services and supports services to people living with disability and their carers, systemic challenges including thin markets, workforce shortages and broad geographic dispersion continue to limit the effectiveness of the NDIS in regional, rural and remote areas. Carers NSW has continued to raise concerns about issues affecting NDIS service delivery in regional, rural and remote areas with this Committee and encourages an ongoing, targeted focus on these areas to ensure that all participants and their carers, regardless of where they live, access the services they need and want, when they choose to.
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 Ada Lester, Policy and Research Officer at adal@carersnsw.org.au or on (02) 9280 4744.
Yours sincerely,
Elena Katrakis
CEO
Carers NSW
1
Introduction
Carers NSW welcomes the opportunity to provide input to this important inquiry and recognises it as a significant opportunity to address a number of longstanding issues regarding the delivery of National Disability Insurance Scheme (NDIS) services in rural, regional and remote areas. While the NDIS has been transformative for many people with disability, their families and carers, Carers NSW recognises that many NDIS participants and their carers experience significant barriers to accessing services in rural, regional and remote areas.
Carers NSW commends previous developments aimed at addressing these challenges including the establishment of the NDIA Rural and Remote Strategy 2016-20191, the implementation of multiple recommendations from the Independent Panel Review in the NDIS Price Guide 2019-202 and recent recommendations from the final report of the Independent Review into the National Disability Insurance Scheme (the NDIS Review).3 However, Carers NSW still has significant concerns about the ongoing low availability and accessibility of NDIS services and supports in rural, regional and remote areas and the impacts on carers who may be filling service gaps in these instances.
Background
Carers NSW believes in the importance of autonomy and self-determination for people living with disability and is supportive of policy and practice that facilitates their independence and meaningful participation in community life, which has been a key purpose of the NDIS. Carers NSW acknowledges 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 people living with disability in Australia who needed assistance with everyday tasks received it from informal supports. Just over half required this assistance and support on a daily basis.4
Carers often support the person they care for with navigating and coordinating NDIS services and supports. The Carers NSW 2022 National Carer Survey found that the 2,717 respondents caring for someone accessing the NDIS were providing on average 110.1 hours of care per week, in addition to support provided by formal services. Of these carers 47.2% were providing 24/7 care. The Survey also found that 84.4% of respondents caring for someone with NDIS services assisted with coordinating the services or care workers, 83.3% provided support with decision making, 91.6% provided administrative support and 77% provided advocacy. Carers are therefore an essential stakeholder in the provision of NDIS services.5
Additionally, of respondents to the 2022 National Carer Survey, 27.7% lived in inner regional areas, 12.2% lived in outer regional areas, and 1.4% lived in a remote or very remote place. Therefore, 41.3% of the respondents lived outside of major cities. The Survey found that respondents living in regional and remote areas were slightly older and more likely to identify as Aboriginal and/or Torres Strait Islander than respondents living in metropolitan areas.6
1 National Disability Insurance Agency (2016), Rural and Remote Strategy 2016-2019. 2 National Disability Insurance Agency (2019), NDIS Price Guide 2019-20. 3 Independent Review into the National Disability Insurance Scheme (2023), Final Report. 4 Australian Bureau of Statistics (2019), Disability, Ageing and Carers, Australia: Summary, 2018, Canberra. 5 Carers NSW (2022), National Carer Survey: Summary Report. Available online at: https://www.carersnsw.org.au/uploads/main/Files/3.Resources/Policy-Research/Carers-NSW_2022_National_Carer_Survey-Report.pdf 6 Ibid.
2
Ensuring ongoing availability of services in thin markets
Carers in regional, rural and remote NSW – and across Australia more broadly – have repeatedly reported their frustration with the lack of choice and availability of disability services.7 The Committees Final Report on NDIS Planning8 found that a central issue for rural, regional, and remote participants is a lack of service providers in their area. This may mean that there are no providers available to deliver the required and funded service. Where providers are available, there may be a very long waiting time for service access. This often means that participants are not utilising the full funding outlined in their plan, which may lead to decreases in future funding.9
The reduction of regional, rural and remote participants’ funding within their plan has a cyclical impact, leading providers to discontinue services where there is ‘decreased’ demand or where there are smaller populations. Providers that continue to operate in thin markets report difficulties associated with recruitment and retention of staff, who may be required to manage higher caseloads and more complex cases than qualified for.10 Additionally, where a participant may have more complex or specialised needs, which may not be adequately covered by available funding in their plan, these participants may be turned away. The inability to access services can have significant repercussions for carers who are often required to provide replacement care. It may also increase psychological distress and reduce carers’ ability to participate in social and economic activities.
Prior to the NDIS, in NSW the (former) NSW Department of Ageing, Disability and Home Care (ADHC) held responsibility for ensuring support for individuals living with disability, acting as or implementing provider of last resort arrangements. However, with the roll out of the NDIS, ADHC was closed. This is unlike other states and territories, which maintained a government department including services for people living with disability within and outside of the NDIS. Under the NDIS, no such provider of last resort provision exists and private providers may deny or withdraw their services at an individual or community level when they are financially unsustainable. This may occur even where there are no other providers available, leaving communities with reduced availability or very little choice and control over their services. In some instances, there may simply be no services available where a provider withdraws from a thin market. While Carers NSW understands that the NDIA is continuing to explore and trial provider of last resort approaches, there remains no publicly available provider of last resort policy. This has significant repercussions for carers who may be required to fill service gaps or spend additional time sourcing or coordinating services with or on behalf of the person they care for.
In response to ongoing challenges relating to thin markets, the recent NDIS Review Final Report recommends setting up provider panels to ensure participants have access to supports where they live.11 While Carers NSW is supportive of measures that recognise and seek to fill provider gaps, these policies should also exist alongside a legislated provider of last resort arrangement. As outlined in Recommendation 13 of the NDIS Review, all Australian governments should agree to a provider of last resort policy via the Disability Reform Ministerial Council. Ensuring these arrangements are embedded in legislation will ensure that participants and their carers have ongoing access to supports even when markets are thin or failing. These arrangements should be evidence based and regularly reviewed to ensure that they are effectively meeting participant needs and adapting to changing service landscapes.
7 Galego, G., Dew, A., Lincoln, M., Bundy, A., Chedid, R. J., Bulkeley, K., Brentnall, J. and Veitch, C. (2017), ‘Access to therapy services for people with disability in rural Australia: a carers’ perspective’, Health and Social Care in the Community, vol. 25, issue 3, pp. 1000-1010; Carers NSW (2022). 8 Joint Standing Committee on the National Disability Insurance Scheme (2020), NDIS Planning Final Report. 9 Ibid. 10 National Disability Services (2018), State of the Disability Sector Report 2018. Available online at: https://www.nds.org.au/pdf-file/d3f2aa1f-52e9-e811-80cf-005056ac7853. 11 Independent Review into the National Disability Insurance Scheme (2023), Final Report.
3
Promoting high quality services in regional, rural and remote areas
The NDIA Rural and Remote Strategy 2016-19 was developed in response to the additional challenges related to service access and quality experienced by people living with disability, their families and carers living in regional, rural and remote communities.12 Carers NSW receives ongoing feedback from carers in regional, rural and remote NSW who have concerns about declining quality of services in these areas under the current NDIS funding model. The market-based system embedded in the NDIS is intended to improve service quality through competition. If private businesses want to attract more NDIS clients, then they are required to provide more innovative and effective models of support. However, this often does not apply in regional, rural and remote areas, where there may be a small number of service providers, or in some instances only one provider with a monopoly over local markets.
While many providers in thin markets are designing and delivering innovative, high-quality services, the lack of competition increases the risk of lower quality services as participants and their carers cannot exercise choice. As such, providers may not be incentivised to improve their performance in order to attract participants. In the context of regional, rural and remote areas, a more nuanced approach is needed to encourage high quality and innovative services where a market-based approach is likely to be less effective. This is especially relevant in the context of the final report from the Royal Commission
into Violence, Abuse, Neglect and Exploitation of People with Disability (the Disability Royal
Commission), which included multiple reports of abuse, violence and neglect resulting from poor quality service provision.13
While some improvements to monitoring and oversight of service quality have been implemented by the NDIS Quality and Safeguards Commission and further improvements are expected with the announcement of the NDIS Provider and Worker Registration Taskforce,14 long-term challenges associated with ensuring high quality disability services and supports in regional, rural and remote areas remain. Carers NSW believes that greater proactive intervention by the NDIA and NDIS Quality and Safeguards Commission is needed to address potential risks to the quality of services and ensure the safety of all participants and their carers.
Ensuring funding models and arrangements reflect costs of service delivery
Specialist intervention including physiotherapy, occupational therapy, speech pathology, and early intervention services are often essential in enabling participants to achieve their goals and increase their independence and community participation. However, some carers have reported to Carers NSW that the NDIS participant they care for has experienced increasing difficulty accessing disability specific or allied health services through the NDIS due to their distance from large cities or regional centres. Many services are centralised in regional centres and major cities, and inadequate or inaccessible public transport often requires carers to drive vast distances to support access to services.15
For carers, who are often time poor, the provision of extensive transport can compound barriers to social and economic participation. Furthermore, where travel costs are not adequately covered through a rural, regional or remote participant’s NDIS plan, carers are more likely to experience additional
12 National Disability Insurance Agency (2016), NDIA Rural and Remote Strategy 2016-2019. Available online at: https://www.ndis.gov.au/media/201/download. Accessed 23 February 2024. 13 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2023), Final Report - Executive Summary, Our vision for an Inclusive Australia and Recommendations. 14 National Disability Insurance Scheme (2024), New Taskforce to help improve NDIS registration. Available online at: https://www.ndis.gov.au/news/9819-new-taskforce-help-improve-ndis-registration. Accessed 23 February 2024. 15 Peel, N., Westmoreland, J. and Steinberg, M. (2002), ‘Transport safety for older people: A study of their experiences, perceptions and management needs’, Injury Control and Safety Promotion, vol. 9, no.1, pp. 19-24.
4
financial costs associated with transport which can further jeopardise their short- and long-term economic security.
Ongoing annual revisions of the NDIS Price Guide have seen increased remote loadings and billable travel time between clients.16 This has demonstrated meaningful recognition by the NDIA of the additional or heightened costs associated with service delivery to regional, rural and remote participants and their carers due to their geographic dispersion. However, these increases are still inadequate in some regional, rural and remote areas of NSW where considerably more travel time is required. A 2016 study found, on interviewing 166 carers in Western NSW, that it took an average of 2.6 hours to access physiotherapy.17 Carers NSW is aware through ongoing consultation with carers in regional NSW that current travel times for service access remains comparative, and in some cases have even increased. Carers NSW believes that NDIA must continue to review travel and transport policies, as well as pricing, to ensure that these adequately reflect the vast distances service providers and participants are required to travel in rural, regional and remote NSW.
Carers NSW is also aware that there has been increasing incentives and support to use telehealth and videoconferencing for service provision in regional, rural and remote areas.18 However, many services cannot be adequately administered online, especially for participants with complex behaviours and diverse needs associated with their disability. Where services and supports are limited to online or telehealth delivery modes in rural, regional or remote areas, this can have significant flow-on affects for carers, especially where this creates gaps in service delivery or requires carers to facilitate complex therapeutic interventions or appointments with participants. Furthermore, given that participants in regional, rural and remote areas may not have access to a digital device or network connectivity, it is important that face-to-face services remain accessible. Carers NSW believes that the NDIA must ensure that – if online approaches are continually encouraged – this is accompanied with programs to improve digital confidence and access to participatory technologies, as outlined by the NDIS Review in recommendation 14.19
Ensuring support for Aboriginal and/or Torres Strait Islander participants and carers
Aboriginal and Torres Strait Islander carers may be particularly impacted by the lack of available, high quality services in regional, rural and remote areas. In the 2022 National Carer Survey, the rate of carers identifying as Aboriginal and/or Torres Strait Islander was 3.4% in regional and rural areas, twice as high as in major cities (1.7%).20 Aboriginal and Torres Strait Islander people living in regional, rural and remote communities face significant challenges to service access. In remote communities, for all people who have been in the NDIS scheme for a year, around two in five are not getting daily activity supports and over one in three are not getting therapy services.21 The NDIS Review found that competition alone in these communities will not deliver adequate services and that there needs to be alternative arrangements to ensure that NDIS participants and their carers are receiving adequate supports.22
16 McKinsey & Company (2018), Independent Pricing Review, National Disability Insurance Agency. Available
online at: https://www.ndis.gov.au/media/359/download. 17 Galego, G., Dew, A., Lincoln, M., Bundy, A., Chedid, R. J., Bulkeley, K., Brentnall, J. and Veitch, C. (2017), ‘Access to therapy services for people with disability in rural Australia: a carers’ perspective’, Health and Social Care in the Community, vol. 25, issue 3, pp. 1000-1010. https://doi.org/10.1111/hsc.12399
18 McKinsey & Company (2018), Independent Pricing Review, National Disability Insurance Agency. Available
online at: https://www.ndis.gov.au/media/359/download. 19 Independent Review into the National Disability Insurance Scheme (2023), Final Report. 20 Carers NSW (2022), National Carer Survey: Summary Report. Available online at: https://www.carersnsw.org.au/uploads/main/Files/3.Resources/Policy-Research/Carers-NSW_2022_National_Carer_Survey-Report.pdf 21 Independent Review into the National Disability Insurance Scheme (2023), Final Report. 22 Ibid.
5
The provision of adequate services in regional, rural and remote areas is especially important for Aboriginal and/or Torres Strait Islander carers who are far more likely to be caring for multiple people and report worse outcomes in relation to health, wellbeing and social connectedness. According to the 2022 National Carer Survey, 43.1% of identified respondents were caring for more than one person, and 17.4% were caring for three or more people.23 Additionally, the Survey found that Aboriginal and Torres Strait Islander carers reported significantly lower wellbeing (50.2%) than the Survey average (57.5%). The majority reported being socially isolated (69.4%) and experiencing high to very high psychological distress (61.2%).24
Where services are available, it is important that these supports are high quality and culturally safe to support engagement and uptake.25 Where services and supports are not culturally safe, Aboriginal and/or Torres Strait Islander participants and carers may find that they have to choose between supports that are not culturally safe or not receiving any supports at all. This may also leave them with very little choice or control over their service experience, creating significant stress for participants and carers. Carers NSW is supportive of the recommendation that governments actively purchase and coordinate services, while working in partnership with community leaders to ensure that the needs and desires of the local community are represented. Furthermore, Carers NSW supports the exploration of direct employment of family and friend carers in remote communities under the NDIS where appropriate paid care services may be unavailable.
Conclusion
Carers NSW again thanks the Committee for the opportunity to provide a response to the inquiry into experiences of NDIS participants in regional, remote and rural areas. While the NDIS has had a significant positive impact on the lives of people living with disability and their carers, there are still significant service gaps in regional, rural and remote areas that must be addressed to ensure equity, while supporting improved outcomes for participants and carers in these areas.
23 Carers NSW (2022), National Carer Survey: Summary Report. Available online at: https://www.carersnsw.org.au/uploads/main/Files/3.Resources/Policy-Research/Carers-NSW_2022_National_Carer_Survey-Report.pdf 24 Ibid. 25 Ibid.
6