Submission to the Joint Standing Committee on
the NDIS: Inquiry into the NDIS Participant
Experience in Rural, Regional, and Remote
Australia
23 February 2024
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National Mental Health
Consumer & Carer Forum
23 February 2024
The National Mental Health Consumer and Carer Forum (NMHCCF) is pleased to provide the following submission to the Joint Standing Committee on the NDIS relating to their Inquiry into the NDIS Participant Experience in Rural, Regional, and Remote Australia.
The NMHCCF is a combined national voice for mental health consumers and carers. We listen, learn, influence and advocate in matters of mental health reform.
The NMHCCF was established in 2002 by the Australian Health Ministers’ Advisory Council. It has historically been funded through contributions from each state and territory government, which have now (FY23-24 onwards) been amalgamated and are afforded by the Australian Government Department of Health and Aged Care. It is currently auspiced by Mental Health Australia.
NMHCCF members represent mental health consumers and carers on many national bodies, such as government committees and advisory groups, professional bodies, and other consultative forums and events.
Members use their lived experience, understanding of the mental health system and communication skills to advocate and promote the issues and concerns of consumers and carers.
The NMHCCF chose to respond to this submission opportunity as Australia’s national voice representing Lived and Living Experience of mental ill-health, and the Disability Representative Organisation (DRO) and Disability Representative and Carer Organisation (DRCO) for psychosocial disability in Australia. The NMHCCF believes that the National Disability Insurance Scheme (NDIS) could better serve rural, regional, and remote populations of Australia by drawing on local knowledge, increasing provider incentives to operate in distant geographical areas, building local workforces, restructuring travel costs, improving telehealth access, and engaging in close co-design with Lived Experience.
We would be happy to provide any further information to support the issues raised in this submission. Please contact the NMHCCF via the Secretariat at nmhccf@mbhaustralia.org or 02 6285 3100.
Yours sincerely,
Kerry Hawkins Helen Day
Carer Co-Chair Consumer Co-Chair
Introduction
The NMHCCF appreciates the opportunity to provide a submission to the Joint Standing Committee on the NDIS in relation to its Inquiry into the NDIS Participant Experience in Rural, Regional, and Remote Australia. As the national voice for those with a lived and living experience of mental-ill health, as well as their family, carers, and kin, the NMHCCF believes it vital to provide background, themes, and recommendations to issues relating to what those on the Scheme experience in less populated and more geographically distanced areas. It is paramount that the voice of those who are often unheard yet disproportionately negatively affected by NDIS policy, procedures, and services is considered. Through a consultation process with members of the NMHCCF, this submission uncovers several key issues relating to Australia’s current ineffectiveness in serving those on the NDIS in its rural, regional, and remote regions, including:
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Onerous access requirements, a lack of Internet reliability, and consistent technical issues.
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The application process can be monumentally difficult.
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Navigation elements are more challenging than in metropolitan areas.
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Travel reimbursement for services is capped and, in some cases, travel to rural areas is not feasible.
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The planning process and plan implementation can be severely limited.
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Greater stigma and discrimination and cultural concerns.
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A lack of an appropriate workforce and local training opportunities.
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Further structural barriers to recovery.
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A lack of investment in the psychosocial disability sector. With the NMHCCF being the national voice for and by people with lived and living experience of mental-ill health and their family, carers, and kin, it is in a unique position to provide the following recommendations to the Inquiry:
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Stimulate close engagement and co-design of the NDIS Review recommendations with people with psychosocial disability and their family, carers, and kin in rural, regional, and remote areas.
- The Australian Government to lead and coordinate the State and Territory
Governments in providing NDIS infrastructure to regional, remote, and rural areas and improve cross-governmental processes and communication.
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Increase funding to State and Territory Governments.
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Recruit geographically based support workers and service providers over clinically driven competencies.
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Reevaluate the NDIS’s definition of ‘reasonable and necessary’.
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Provide greater support to promote innovative pilot projects in geographically distant areas.
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Heighten budget adaptation and flexibility for NDIS participants in these regions.
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Adapt services and supports to the particular region. 3
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Improve initiatives and research targeted at reducing stigma and discrimination.
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Develop NDIS Lived Experience Community Co-committees and Champions in rural, regional, and remote areas.
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Allow more flexibility for NDIS participants in choosing services and supports, as well as service providers for travel and providing more teleconferencing options.
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Foster an environment of relationship-building and trust between support workers, service providers, and NDIS participants.
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Provide more options and flexibility in training local workforces.
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Improved Internet access and reliability for rural and regional Australia. The NMHCCF offers its standing as the national voice for Mental Health Lived Experience and its lived experience expertise to the Joint Standing Committee on the NDIS to assist where it
can in terms of providing evidence and consultation to inform its final report
recommendations. It also welcomes the opportunity to work with the Joint Standing Committee on the NDIS in improving the Scheme to ensure that equity to services and support is achieved regardless of where one is geographically located.
Background/History
“Australians in regional and remote areas face significant geographical barriers to accessing adequate health care, with data showing that this population group has higher rates of hospitalisation, injuries, and death than people in major cities1” (p. 1)2. In addition, people in rural and remote areas have lower access to MBS-subsidised mental health services than those in metropolitan regions3 due to the “challenges of geographic spread, low population density, limited infrastructure, and the higher costs of delivering rural and remote health” (p. 1)1. Covid-19 and its aftermath has disproportionately exacerbated these ongoing inequities1, as well as the current cost of living crisis4. Furthermore, the negative effects of unequal access due to geographical residency are disproportionate on First Nations people, with 65% of the Australian Indigenous population living in regional and remote communities and having a 1.5 time-higher likelihood to have a disability or restrictive long-term health condition than non Indigenous Australians2. About 10% of the 37,313 First Nations NDIS participants live in remote populations as of March 20222.
Challenges around accessing healthcare negatively affect NDIS participants by impacting the fundamental values and outcomes of the NDIS. The following information comes from Ark
1 Australian Institute of Health and Welfare. (2023, September 11). Rural and remote health. https://www.aihw.gov.au/reports/rural-remote-australians/rural-and-remote-health 2 Wheeler, R. (n.d.). NDIS services in rural and remote Australia. Ark Support Coordination. https://www.arksc.org/blog/ndis-rural-remote-australia 3 Nikoloski, C. (2023, February 14). Weekly update, CEO message. https://mhaustralia.org/civicrm/mailing/view?reset=1&id=2174&cid=103630&cs=7675d5a96e3a3e859c132be111e79c1c1707866146168 4 Mental Health Australia. (2023, September 13). Report to the nation 2023. https://mhaustralia.org/sites/default/files/docs/report to the nation 2023.pdf 4
Support Coordination2. Thinner markets in regional and remote areas reduce NDIS participant choice and control over their service provider as provider competition is not incentivised by a scarcer service base. In addition, control is often not achieved by many remote Indigenous NDIS participants and their family, carers, and kin due to the difficulties in achieving a full understanding of their plan to best achieve their goals. Many have issues in accessing the Scheme, obtaining functional capacity assessments, and having an explanation of the Scheme in a First Nations language. Moreover, sparsely located NDIS participants often receive sufficient NDIS funding but are unable to spend it without the infrastructure in place or workforce to deliver appropriate services. This can then have a knock-on effect whereby a participant underutilises their plan and cannot justify receiving the same amount of funding in their next plan.
The NMHCCF appreciates that regional, rural, and remote health care access and inequality issues are difficult to tackle from a Commonwealth perspective, which is why it is necessary to obtain support from all levels of government and local communities, which can be driven from the federal level. The NMHCCF also recognises that there has been ongoing work by the Department of Social Services (DSS) and the National Disability Insurance Agency (NDIA) that attempts to mitigate some of these issues and address supply gaps, such as development of the Rural and Remote Strategy, the Aboriginal Disability Liaison Officer Program, and the Community Connectors Program2. These are promising initiatives, but consumers and carers want the focus to now be geared towards drawing on local knowledge, increasing provider incentives to operate in distant geographical areas, building local workforces, restructuring travel costs, improving telehealth access, and engaging in close co-design with Lived Experience5.
Themes/Issues Identified by the NMHCCF
The NMHCCF considered the Terms of Reference of the Inquiry6 in its responses, with particular reference to:
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the experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews;
• the availability, responsiveness, consistency, and effectiveness of the National
Disability Insurance Agency (NDIA) in serving rural, regional, and remote participants;
- participants’ choice and control over NDIS services and supports including the availability, accessibility, cost, and durability of those services;
5 Wheeler, R. (n.d.). What can be done to improve thin NDIS markets? Ark Support Coordination. https://www.arksc.org/blog/ndis-thin-market 6 Parliament of Australia, Joint Standing Committee on the National Disability Insurance Scheme. (2023). Terms of reference. https://www.aph.gov.au/ParliamentaryBusiness/Committees/Joint/NationalDisabilityInsuranceScheme/RuralRegionalandRemote/TermsofReference
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• the particular experience of Aboriginal and Torres Strait Islander participants,
participants from cultural and linguistically diverse backgrounds, and participants from low socio-economic backgrounds with the NDIS; and
- any other related matters. The following themes and issues were identified as requiring solutions:
Onerous access requirements, a lack of Internet reliability, and consistent technical issues
“I was required to submit an application in pdf form one day, which I did but was then asked for the specific NDIS pdf format. As the application included large amounts of medical information that spread to over 130 pages, the file size under the NDIS pdf format was then too big so I had to find a way to compress it. Internet access is also incredibly unreliable and slow, so this took far more time than necessary” – NSW Consumer Representative.
“We held workshops a few years ago with Indigenous communities based in rural WA. They had no Internet access and despite Aboriginal and Torress Strait Islander populations already being highly disadvantaged, there were no registered providers at all and no psychosocial peer workers available to help” – WA Carer Representative.
The application process can be monumentally difficult
Metropolitan NDIS-based participants have better access to peer advocates and training offered on applying to the NDIS is usually only offered in metropolitan areas.
“There is a general inaccessibility of getting on the Scheme as the NDIS maintains an inherent assumption that one’s carer will be able to help with or do an application for their loved one. This is part of the reason why there is a carer drain in the country” – NSW Carer Representative.
Navigation elements are more challenging than in metropolitan areas
A rural, regional, or remote NDIS participant with psychosocial disability often has their family, carer, kin, or support worker in a different location.
Support coordination is often not offered locally, and participants say that face-to-face contact is overwhelmingly beneficial with this service when it comes to communicating needs and picking up on clues.
Travel reimbursement for services is capped and, in some cases, travel to rural areas is not feasible
Travelling hours to a meeting is just not viable for people on the NDIS living in distant geographical locations. Furthermore, support people often do not live in the town or area due to privacy and/or cultural reasons.
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Due to workers usually commuting into communities, Tasmanian families on the West Coast note an increase in cancellations in winter when extremes of weather impact travel. In rural Queensland, there are NDIS participants who have not been able to receive services because access is limited to four-wheel drives, which would be regularly cut off from major roads due to fires and flooding.
Remoteness actually increases package size for NDIS participants but does not allow for how difficult it is to spend the extra funds. In addition, there are provider travel caps that apply in the price guide for regional (MMM4-5), remote (MMM6), and very remote/rural (MMM7) areas, which need to be made a lot more flexible for providers7. These costs should not have to come out of a participant’s plan.
The planning process and plan implementation can be severely limited
People in rural, regional, or remote areas are limited to the services they can be offered and planning for services does not include the impact of travel. There are limits to how much an NDIS provider can claim on the NDIS for travel, which is a systemic impediment to those based in locations outside of metropolitan areas. In addition, an NDIS participant is often offered the closest professional services rather than services catering to their specific needs.
Getting functional assessments through core supports is impacted depending on location. There are often huge wait times and limited availability of fly-in, fly-out (FIFO) allied health professionals.
It often takes a crisis situation to have people in remote communities heard, such as the recent crime wave experienced in Alice Springs8.
Greater stigma and discrimination and cultural concerns
There is heightened stigma and discrimination towards people with psychosocial disability in general9, which is then amplified in distant regions.
There is often a strong cultural narrative around not seeking government support in these areas, which means even considering applying for the NDIS is not an option.
NDIS processes typically cater to the expectations of metropolitan participants.
7 National Disability Insurance Scheme. (2023, November 28). Pricing arrangements and price limits 2023-24. https://www.ndis.gov.au/providers/pricing-arrangements (pp. 19-22) 8 Garrick, M., & Truu, M. (2023, January 13). A dangerous game. https://www.abc.net.au/news/2022-12-18/a-dangerous-game-youth-crime-crisis-alice-springs/101735492 9 Australian Institute of Health and Welfare. (2002, July 5). People with disability in Australia. https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/justice-and-safety/disability-discrimination 7
A lack of an appropriate workforce and local training opportunities
Burnout of psychologists is common in rural, regional, and remote areas as they get flooded with appointments and have to leave sooner or later.
A range of FIFO allied health professionals are not understanding of the environment and culture of the distant location. This lack of continuity and turnover means that speaking with different health professionals about their story often retraumatises NDIS participants with psychosocial disability, impeding their chances to move ahead in one’s recovery. Trust is vital between workers and NDIS participants in their recovery, which takes time to build.
Families on the West Coast of Tasmania express concerns that the lack of workers in remote areas impacts their choice and control, which is compounded by a lack of sensitivity and understanding of the remote culture that their work sits in.
Community members seeking to be trained up as support workers have expressed disappointment and concern that their placement cannot be done locally and therefore requires travel to the service providers that sit away from the community, which impacts local recruitment. Desperate for more support workers, regional and remote communities have asked state and territory governments if there can be any flexibility around NDIS support workers being used across aged care to fill the gaps in services.
Further structural barriers to recovery
There are structural barriers to one’s recovery in rural, regional, and remote areas. In addition to the second point in the above section (‘A lack of appropriate workforce and local training opportunities’), the recovery principle of hope is often not addressed as hope becomes rare in rural communities that have seen “the worst of it”. In many areas, without access to care, recovery is not even on the agenda, which the NDIS should be addressing.
There is no accommodation for language issues, especially with First Nations and Culturally and Linguistically Diverse (CALD) communities. There are structural limitations for these communities in understanding NDIS documents, as, unlike Centrelink, there is no requirement for the NDIS to translate their documentation.
“There are minimal to no service providers in the country as it is difficult to structure supports around people who do not ask for help and do not necessarily want it due to the geographical culture” – QLD Consumer Representative.
“There is often a choice from less, where there are less suppliers of certain products (e.g., dental appliances) in remote areas, which results in inflated NDIS prices for those products. In addition, there is the lottery of what support coordinator and planner one will receive in more remote areas. Less choice of planner means the outcomes can be completely different, as some planners come with the mindset that they are there to stop participants receiving what they do not need” – NSW Carer Representative.
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A lack of investment in the psychosocial disability sector
“There are no fit-for-purpose supports in regional areas and participants are disengaged as the services they do receive deliver more harm than good” – WA Carer Representative.
There is a lack of access to the right supports, meanwhile the NDIS maintains the illusion of choice and control for participants – 6% of the entire WA health budget is in community supports!” – WA Carer Representative.
Recommendations
Recommendation 1: Stimulate close engagement and co-design of the NDIS Review
recommendations with people with psychosocial disability and their family, carers, and kin in rural, regional, and remote areas
It has been recommended that the planning process be humanised in the NDIS Review Final Report, which includes planners meeting with participants. There is a challenge as to what this will look like and how choice and control will be protected under this recommendation if the Australian Government decides to implement it. Therefore, close co-design needs to be undertaken with people with psychosocial disability and their family, carers, and kin to get this right.
Recommendation 2: The Australian Government to lead and coordinate the State and Territory Governments in providing NDIS infrastructure to regional, remote, and rural areas and improve cross-governmental processes and communication
The current approach seems to be in providing more money to service providers, leaving it an assumed job of the states and territories to implement infrastructure and services. This has resulted in issues of siloing, non-communication, and delegation of
responsibility in interactions between the federal and decentralised levels of
government. Ultimately, this causes further harm to participants for whom this Scheme is supposed to be helping. The federal government needs to be the one to take a strong stance on the expected responsibilities of each level of government and offer solutions to work with the states and territories in order to benefit rural, remote, and regional participants.
Recommendation 3: Increase funding to State and Territory Governments
In implementation of Recommendation 2, once State and Territory Government roles have clearly been delineated from those of the Australian Government, it is important that the latter provides an increase in funding to states and territories to improve regional, rural, and remote NDIS infrastructure and services, as well as incentivise service providers to operate in these areas.
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Recommendation 4: Recruit geographically based support workers and service providers over clinically driven competencies
There is a need for competent local area coordinators and planners recruited from the regions rather than a clinically based workforce. The geographical location of workers is paramount to understanding the culture and nuances of a particular region. This is especially important for continuity.
Recommendation 5: Reevaluate the NDIS’s definition of ‘reasonable and necessary’
There needs to be a reevaluation of the NDIS’s definition of ‘reasonable and necessary’ to include access to basic needs. In many regional, remote, and rural areas basic needs and supports, such as running water, adequate housing, and personal safety, are not met, which are necessary for a person with psychosocial disability to then begin working on their personal goals and recovery.
Recommendation 6: Provide greater support to promote innovative pilot projects in
geographically distant areas
Innovative pilot projects should be adapted to regional, rural, and remote areas. For example, the successful Looking Forward, Moving Forward project run in Western Australia co-designs a service evaluation capturing organisational change based on culturally secure, fit-for-purpose psychosocial services for Aboriginal and Torres Strait
Islander peoples. The Allawah! Burdiyas! Community Conference Call to Action was a
key outcome, as well as significant learnings around how community engagement between Elders and service leaders can lead to more culturally accessible services through a closer co-design process. Pilot projects such as this one should be urgently implemented and adapted, especially in the Torres Strait. In addition, it is important to
trial innovative programs around families to better integrate families in NDIS
processes. One way to do this could be to leverage off of Infant, Child, and Family Wellbeing hubs in Victoria.
Recommendation 7: Heighten budget adaptation and flexibility for NDIS participants in these regions
There needs to be decreased limitations around travel and housing in geographically distant areas, where a participant’s budget could be more adaptable and flexible to meet their needs as opposed to being prescribed by the NDIS. Furthermore, the NDIS needs to be flexible in not prescribing particular services and supports. Understanding the needs of participants and allowing for creative approaches to meeting unmet participant needs in rural, regional, and remote locations is key.
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Recommendation 8: Adapt services and supports to the particular region
There should be an expectation that services and supports are adapted to the particular region. For example, the Partners in Recovery program required support workers to work in the local area. This approach was supposed to be used by the Primary Health Networks, which has unfortunately not been the case. This requires the concept of ‘regionalising’ the NDIS with services delivered by an area, not for an area from elsewhere.
Recommendation 9: Improve initiatives and research targeted at reducing stigma and
discrimination
There is a need to address mental health-related stigma and discrimination within the NDIS and funding should be put toward more research in this area. The National Mental Health Commission opened a consultation process in early 2023 to develop a National Stigma and Discrimination Reduction Strategy, which is still yet to be developed. The NDIA should develop its own strategy on reducing stigma and discrimination, which targets inherent stigma and discrimination in NDIS structures and processes.
Recommendation 10: Develop NDIS Lived Experience Community Co-committees and
Champions in rural, regional, and remote areas
The development of Lived Experience NDIS Co-committees in rural, regional, and remote areas, leveraging lived experience perspectives from the local community is important to build community capacity and allow for a mechanism to feed back to the NDIS what the participants within a local region need. Another option is to use Community Champions of Lived Experience rather than bring in ‘experts’ to diagnose and address issues.
Recommendation 11: Allow more flexibility for NDIS participants in choosing services and supports, as well as service providers for travel and providing more teleconferencing options
The NDIS should reasonably allow for greater flexibility for participants in
geographically distant areas to choose their supports with localised services that may not fit the plan’s prescription. Furthermore, allowing for more teleconferencing options will provide greater access for remote NDIS participants with psychosocial disability and increase service provider productivity. Where this is not an option due to the nature of the service or support coordination, increased travel allowances for service providers needs to be made available from the NDIS.
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Recommendation 12: Foster an environment of relationship-building and trust between support workers, service providers, and NDIS participants
Fostering an environment of relationship-building and trust is very important to families who see a high turnover of workers, the fallout of discontinuation of support, and appointment cancellations. This can be better managed at a practical, structural level from the NDIS in relation to its remote workers and service providers by having more flexibility around financially covering travel and the services and supports that participants can choose from. From a more conceptual level, the NDIS can provide guidance to service providers in the form of an updated Strategy10 or Action Plan geared towards regional, remote, and rural areas.
Recommendation 13: Provide more options and flexibility in training local workforces
This could be achieved by implementing more local-run initiatives, providing more funding to local employers to run programs, making travel costs more adaptable and case-specific, and creating flexibility around support workers performing placements locally.
Recommendation 14: Improved Internet access and reliability for rural and regional Australia
Improvements should be made in the Department of Infrastructure’s Better
Connectivity Plan to better connect rural and regional Australia, especially related to place-based digital connectivity infrastructure. This could include more overall funding to the Plan or a great portion of the funding to place-based connectivity to ensure reliable and consistent Internet is accessible in these regions.
10 The most recent NDIS Rural and Remote Strategy 2016-2019 does not appear to have been renewed or updated (https://www.ndis.gov.au/about-us/strategies/rural-and-remote-strategy). 12