NDIA Accountability Project

Submission to the Joint Standing Committee on the NDIS: Inquiry into the NDIS Participant Experience in Rural, Regional, and Remote Australia

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Submission to the Joint Standing Committee on

the NDIS: Inquiry into the NDIS Participant Experience in Rural, Regional, and Remote Australia

23 February 2024

1

NDIS participant experience in rural, regional and remote Australia

Submission #4

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.

emembers 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,

kerrry 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:

  • Onerous access requirements, a lack of Internet reliability, and consistent technical issues.
  • The application process can be monumentally difficult.
  • Navigation elements are more challenging than in metropolitan areas.
  • Travel reimbursement for services is capped and, in some cases, travel to rural areas is not feasible.
  • The planning process and plan implementation can be severely limited.
  • Greater stigma and discrimination and cultural concerns.
  • A lack of an appropriate workforce and local training opportunities.
  • Further structural barriers to recovery.
  • A lack of investment in the psychosocial disability sector.

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:

  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.
  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.
  3. Increase funding to State and Territory Governments.
  4. Recruit geographically based support workers and service providers over clinically driven competencies.
  5. Reevaluate the NDIS’s definition of ‘reasonable and necessary.’
  6. Provide greater support to promote innovative pilot projects in geographically distant areas.
  7. Heighten budget adaptation and flexibility for NDIS participants in these regions.
  8. Adapt services and supports to the particular region.

NDIS participant experience in rural, regional and remote Australia

Submission 34

[Image not converted to Markdown – “National Mental Health Consumer & Carer Forum Logo” – check the source PDF page for the actual content]

  1. Improve initiatives and research targeted at reducing stigma and discrimination.
  2. Develop NDIS Lived Experience Community Co-committees and Champions in rural, regional, and remote areas.
  3. Allow more flexibility for NDIS participants in choosing services and supports, as well as service providers for travel and providing more teleconferencing options.
  4. Foster an environment of relationship-building and trust between support workers,service providers, and NDIS participants.
  5. Provide more options and flexibility in training local workforces.
  6. Improved Internet access and reliability for rural and regional Australia. The NMHCCF offers its standing as the national voice for Mental Health Lived Experiencandits lived experience expertise to the Joint Standing Committee on the NDIS to assist wheritcanin terms of providing evidence and consultationto inform its final reportrecommendations. It also welcomes the opportunity to work with the Joint StandingCommitteeon the NDIS in improving the Scheme to ensure that equitytoservicesandsupportis achieved regardless of where one is geographically located.

Background/History

“Australians in regional andremoteareas face significant geographical barriers to accessingadequate health care,with data showingthat this population group has higher ratesofhospitalisation, injuries, and death than people in major cities1” (p. 1)2. In addition,people inruralandre mote areas have loweraccess to MBS-subsidised mentalhealth services thant hose in metropolitan regions3 dueto the “challenges of geographic spread, lowpopulationdensity, limited infrastructure, andthehigher costsof delivering ruraland remote health”(p. 1)1. Covid-19andan it aftermathhas disproportionately exacerbated these ongoing inequities1,aswellasthe currentcost of living crisis4. Furthermore, then egative effects of unequal accessdue togetographical residency aredisproportionate on First Nations people, with65% oftheAustralian Indigenous populationlivinginregionaland remotec ommunitiesand havinga 1.5time-high er likelihoodtohaveadisabilityorrestrictive long-termhealth conditionthan non- Indigenous Australians2. About 10%ofthe37,313FirstNationsNDISparticipantsliveinremotepopulations asofMarch20222.

Challenges around accessing healthcare negatively affect NDIS participants by impacting the fundamental values and outcomes of the NDIS. The following information comes from Ark

Submission 34

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.

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 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:

  • 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;

² Wheeler, R. (n.d.). What can be done to improve thin NDIS markets? Ark Support Coordination. https://www.arksc.org/blog/ndis-thin-market ³ Parliament of Australia, Joint Standing Committee on the National Disability Insurance Scheme. (2023). Terms of reference. http://aph.gov.au/Parliamentary Business/Committees/Joint/National_Disability_Insurance_Scheme/RuralRegionalandRemote/Terms_of_Reference

Submission 34

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.

NDIS participant experience in rural, regional and remote Australia

Submission 34

The National Mental Health Consumer & Carer Forum

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 providers[1]. 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.

A crisis situation is frequently required before people in remote communities feel heard; such as the recent crime wave experienced in Alice Springs [2].

Greater stigma and discrimination and cultural concerns

There is heightened stigma and discrimination towards people with psychosocial disability in general [3], 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.

The 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) 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 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

A lack of an appropriate workforce and local training opportunities

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 fewer 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.

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\nservices 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\nchoice and control for participants – 6% of the entire WA health budget is in community \nsupports!” – 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

A challenge exists regarding what this will look like and how choice and control will be protected under it if the Australian Government decides to implement it.\nThe planning process has been recommended that the planning process be humanised in the NDIS Review Final Report which includes planners meeting with participants. Therefore,\nclose 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 involve providing money to service providers leaving an assumed job of states/territories implementing services & infrastructure. This results in siloing noncommunication delegation between federal decentralized levels causing harm to Scheme recipients. It’s imperative Federal government takes a strong stance on expected responsibilities offering solutions working w States Territories benefit Rural Remote Regional Participants

Recommendation 3: Increase funding to State and Territory governments

in implementation of recommendation two once state territory roles are clearly delineated from those Australia’s important provide increase fund support regions incentivize provider operation

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’

A reevaluation of the NDIS’s definition of “reasonable and necessary” needs to occur 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. It is also important to trial innovative programs around families to better integrate families into NDIS processes; One way to do this could be leveraging Infant, Child, and Family Wellbeing hubs in Victoria.

Recommendation 7: Heighten Budget Adaptation and Flexibility for NDIS Participants in These Regions

A decrease of limitations surrounding travel and housing needs to occur in geographically distant areas where participant budgets may become adaptable and flexible enough to meet individual’s specific requirements rather than being prescribed by the NDIS. Furthermore, flexibility within the NDIS must allow it not prescribe particular supports or services. Understanding participants’ unique circumstances while allowing creative approaches towards meeting unmet need across all locations remains essential.

Recommendation 8: Adapt services and supports to the particular region

A recommendation was given stating 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 Primary Health Networks; however, it has unfortunately not been implemented. This requires a concept of ‘regionalising’ the NDIS where services are delivered locally rather than provided remotely.

Recommendation 9: Improve initiatives and research targeted at reducing stigma and discrimination

The need exists to address mental health-related stigma and discrimination within the National Disability Insurance Scheme (NDIS), requiring funding towards further research on these issues. The National Mental Health Commission initiated consultation processes early in 2023 with plans to develop a national Stigma and Discrimination Reduction Strategy which is still yet to be developed. The NDIA must create its own strategy focused on decreasing inherent stigmas and discriminations present throughout existing structures and procedures related to the NDIS.

Recommendation 10: Develop NDIS Lived Experience Community Co-committees and Champions in rural, regional, and remote areas

The development of lived experience co-management committees for participants across rural, regional, and remote locations can leverage perspectives from those living nearby—this builds community capacity while providing feedback mechanisms regarding participant needs directly back into the system. Alternatively, utilizing champions who have personal experiences may prove more effective compared to relying solely upon external experts when diagnosing or addressing challenges faced by individuals participating in this program.

Recommendation 11: Allow greater flexibility for NDIS Participants

A recommendation was given stating that it should reasonably allow increased flexibility where geographically distant people choose their supports using local services not necessarily outlined under current plan prescriptions; furthermore allowing additional teleconferencing options will provide better access opportunities specifically tailored toward psychosocial disability among isolated populations as well increase productivity levels amongst service providers involved within said programs – if such alternatives aren’t available due nature/scope provided support coordination then enhanced travel allowances need made accessible through National Disability Insurance Scheme funding.

Recommendation 12: Foster an environment of relationship-building and trust between support

workers, service providers, and NDIS participants

e 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

e 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

e 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).