Experiences of supporting people to access psychosocial disability services in regional and rural Victoria

Experiences of supporting people to access, or who are accessing, the NDIS for psychosocial disability in regional and rural Victoria

Tandem March

submission 2024

Tandem Inc., Wurundjeri Country

70 Trenerry Crescent, Abbotsford 3067 Telephone: 03 8803 5555

Authorised by: Sarah

Irving

Position in organisation: Acting Director Policy and

Advocacy

For more information about this submission please contact:

tandem Sarah Irving, Acting Director Policy and Advocacy

About Tandem

Tandem is proud to be the trusted voice of family, carers and supporters in mental health in Victoria. As the Victorian peak body with a sole focus on the needs and interests of mental health carers, Tandem’s role is to provide leadership, coordination and knowledge for the organisations and individuals who are working to improve outcomes for Victorian people living with mental health challenges. Tandem is committed to ensuring that the importance of the contribution, expertise, experiences and needs of family, friends and other carers is recognised and addressed, and that they will be essential partners in treatment, service delivery, planning, research and evaluation.

What we do

Tandem helps raise community awareness about mental health issues and the challenges faced by family, carers and supporters of people with mental health issues and

provides information, education and training to Members and others involved in caring for people with mental health issues.
ensures state and federal governments recognise the role, contribution and needs of the carers of people with mental health issues.
facilitates communication between carers, government and other stakeholders in the mental health system.
advocates for policy changes and improved services to address carer needs.
supports carer participation in the planning, delivery and evaluation of services for people with mental health issues and their carers.
facilitates the development of relationships between carers and carer-focused organisations and other stakeholders in the mental health service system, and facilitate the establishment of partnerships between carers and service providers; and
encourages research on best practice in carer support. Who is a mental health carer?

a. a family member, partner, friend or other person; b. of any age; who will commonly; c. be actively involved in caring for and supporting a person with mental health challenges, with this role not necessarily a static role, but rather a role that is capable of fluctuation over time according to the needs of the person with mental health challenges and the carer;

d. have their life impacted by the wellbeing of the person with mental health challenges; and

e. undertake for the care of and support of a person with mental health challenges (from Tandem’s Rules of Association, 2023 p. 7)

Acknowledgement of Country

Tandem wishes to acknowledge the Wurundjeri Woiwurrung peoples of the Kulin nation, on whose Country the Tandem office sits, that sovereignty was never ceded, and that it always was and always will be Aboriginal land. Tandem also wishes to acknowledge the wisdom within Aboriginal knowledge systems about relationality, and social and emotional wellbeing.

Acknowledgements

Tandem is grateful to the families, carers and supporters, and members of the workforce, who have responded to the various surveys that have informed this submission. We sincerely thank them for their time, particularly given that families, carers and supporters as a cohort are time poor, and many survey responses conveyed distressing experiences.

Further acknowledgements include Tandem staff involved in the development of this submission, in particular Joanna Pankhurst who led and prepared this response, and Wendy Ayzit, Diane McCarthy, Amaya Alvarez, Kelly Stuart, Jen Bite and Sarah Irving, who all made valuable contributions.

What we do ………………………………………………………………………………………………………………………………….. 4 Executive summary ……………………………………………………………………………………………………………………… 7 Summary of recommendations …………………………………………………………………………………………………… 8 Introduction ………………………………………………………………………………………………………………………………… 13 Experiences of the NDIS for psychosocial disability support as dysfunctional and damaging …………………………………………………………………………………………………………………………………………………….. 14 A lack of understanding of psychosocial disability and of a recovery focus within access, planning and review …………………………………………………………………………………………………………… 14 Access, planning and review processes as dysfunctional and distressing ………………………… 15 Access ………………………………………………………………………………………………………………………………. 15 Planning …………………………………………………………………………………………………………………………….. 16 Review ……………………………………………………………………………………………………………………………….. 17 Poor experiences of NDIA staff ………………………………………………………………………………………….. 17 Commodification at the expense of quality and ethical practice ……………………………………….. 18 Lack of relational recovery, family inclusive practice, and opportunities to build social capital ………………………………………………………………………………………………………………………………………….. 19 Lack of coordination and integration with health and social services ………………………………… 20 Systemic and structural disadvantage, and discrimination, as exacerbated within regional and rural Victoria ……………………………………………………………………………………………………………………….. 21 A severe lack of skilled psychosocial support, allied health, and clinical and community mental health services ……………………………………………………………………………………………………….. 21 Barriers to access due to lack of transport and technology ……………………………………………….. 25 Structural disadvantage exacerbating mental health challenges and preventing recovery .. 26 Stigma and discrimination …………………………………………………………………………………………………. 29 Detailed recommendations ……………………………………………………………………………………………………… 29 Adequate, recovery focused psychosocial disability support within and outside the NDIS that is integrated with related systems, reforms and initiatives …………………………………………… 29 An approach by the NDIS to psychosocial disability that promotes recovery and family inclusive practice ………………………………………………………………………………………………………………. 30 Foundational supports as co-produced, block funded and responsive …………………………….. 32 Exploring commissioning models for disability support that build social capital and community ………………………………………………………………………………………………………………………… 33 Robust co-design, monitoring and active stewardship in partnership with people with lived experience ………………………………………………………………………………………………………………………… 35

Addressing systemic and structural disadvantage, and discrimination ……………………………… 37 Housing and income security …………………………………………………………………………………………….. 37 Stigma reduction ……………………………………………………………………………………………………………….. 40

Executive summary

Tandem welcomes the opportunity to provide a submission to the inquiry into the NDIS participant experience in rural, regional and remote Australia by the Joint Standing Committee on the National Disability Insurance Scheme.

This submission is based on experiences, insights and ideas of families, carers and supporters of people who experience mental health challenges, as well as a number of mental health and psychosocial disability workers, in regional and rural Victoria. In addition to various Tandem surveys, this submission’s development has benefited from Tandem’s Support and Referral Line staff in relation to their experience with regional and rural callers.

Tandem’s findings strongly align with what the NDIS Review heard in relation to accessing, or attempting access to, the NDIS for psychosocial disability support. Tandem survey respondents, and Support and Referral Line callers, in regional and rural Victoria report: a lack of understanding of psychosocial disability and of a recovery focus within access, planning, and review; access, planning and review as largely dysfunctional and distressing; poor experiences of NDIA staff; commodification at the expense of quality and ethical practice; lack of relational recovery, family inclusive practice, and opportunities to build social capital; and a lack of coordination and integration with health and social services.

People with psychosocial disability and their families, carers and supporters experience poorer health and wellbeing outcomes than the general population. Further, in regional and rural areas, this cohort are particularly affected by various challenges, including systemic and structural disadvantages, and discrimination. The effects of severely inadequate mental health and other health and community services, long distances from the services that do exist, lack of transport and access to technology, income and housing insecurity and mental health stigma, as well as extreme weather events and natural disasters, are compounding. These disadvantages also ramify poor experiences of the NDIS, including the severe lack of skilled psychosocial support in regional and rural areas. The potential for psychosocial disability support to have positive outcomes within regional and rural areas is thus greatly undermined.

Tandem wholeheartedly agrees with the NDIS Review that a holistic approach to disability reform in which barriers to full citizenship are identified and addressed is imperative. The central contention of this submission is that, in addition to the implementation of the NDIS Review’s recommendations, disability reform must involve tailored approaches to challenges associated with psychosocial

disability within regional and rural contexts, including strong links to broader strategies to address structural disadvantage.

Tandem supports the NDIS Review’s recommendations for major changes to the approach to psychosocial disability, and improvements to NDIS processes and governance more broadly. Directions within the NDIS Review’s proposed comprehensive reform are positive and necessary, yet there is much detail to be established. The NDIS Review rightly stated that this detail should be developed with those with lived experience. The design of this detail is also a valuable opportunity to ensure that challenges with regional, rural and remote contexts are addressed.

This submission provides detailed recommendations to build upon those of the NDIS Review. Recommendations are made that would benefit people with psychosocial disability and families, carers and supporters regardless of geographical location, however, also address challenges associated with regional and rural contexts. We make suggestions for achieving the provision of psychosocial disability support within and outside the NDIS that is accessible, recovery focused, and integrated with related systems, reforms and initiatives. More specifically, we suggest mechanisms to promote relational recovery, family-inclusive practice, and peer-led service provision.

Tandem welcomes the NDIS Review’s recommendations for alternative commissioning for First Nations and remote communities, and suggests exploring the possibility of extending these approaches within regional areas more broadly. Commissioning models for disability support that build social capital and community can make effective contributions towards addressing systemic and other challenges that are exacerbated within regional and rural areas. Tandem also strongly supports the NDIS Review’s focus upon stronger market stewardship, and robust, independent oversight of the disability system more broadly. We contend that achieving equitable access to safe and effective disability supports will require genuine partnership with people with disability and their families, carers and supporters, throughout all aspects of governance. Building upon the NDIS Review’s recommendations, we suggest mechanisms to ensure that the disability sector, including its reform, is lived experience led and accountable.

Our recommendations also reflect an acknowledgement that, for many in regional and rural areas, action to address disadvantage and discrimination is a necessary precondition to facilitate recovery for people with psychosocial disability. We make a range of suggestions to address systemic and structural disadvantage, and mental health stigma, as well as integration of these measures with disability reforms.

Summary of recommendations

Tandem calls on the federal government to;

Adopt the recommendations of the NDIS Review in full, including all Actions within

Recommendation7:IntroduceanewapproachtoNDISsupportsforpsychosocialdisability,focused

onpersonalrecovery,anddevelopmentalhealthreformstobettersupportpeoplewithsevere mentalillness.

Address barriers to service engagement in regional and rural areas such as transport and technology by providing adequate price caps as well as funding within NDIS packages, to minimise inequities in access.
Ensure Navigators who undertake proactive outreach to people with psychosocial disability have sufficient competencies and resourcing to build trust and relationships, particularly given many have had harmful experiences with the mental health system and/or NDIS. It is also important that Navigators have appropriate competencies in identifying young mental health carers.
Introduce specific mechanisms to promote family-inclusive practice within assessment, planning and review processes, such as ensuring that Carer Impact Statements are considered. Incorporate family inclusive practice within staff training, and culture and capability plans, at the NDIA and National Disability Supports Commission.
Include family-inclusive practice as a domain within the annual independent audit of the NDIA and National Disability Supports Commission, and enable family, carers and supporters in addition to NDIS participants to provide satisfaction scores on engagement with the NDIA.

Tandem recommends that the federal government works with the states and territories to;

Secure a joint, public commitment to adequate funding for foundational supports, and provide the proposed independent Disability Outcomes Council with the powers and resourcing necessary to promote government accountability for investment. This should include funding that is sufficient to address barriers to service engagement in regional and rural areas, such as transport and technology, and enable workers to have reasonable caseloads and time for ongoing training, supervision and engagement in communities of practice.
Block fund foundational supports for psychosocial disability, to ensure that provision is not time-limited and has capacity for intensive, flexible and assertive support including advocacy, support coordination, and close collaboration with other services.
Ensure that people transitioning from the NDIS to foundational and mainstream services receive appropriate support with this process and are not left without service provision either in the interim or ongoing.
Build foundational supports from not-for-profit health and social services, particularly those with strong connections to local communities, including Aboriginal health organisations and those for and by various culturally and linguistically diverse communities. Avoid foundational supports becoming an additional siloed system that exacerbates current fragmentation.
Co-produce foundational supports, whereby people with disabilities and their families, carers and supporters meaningfully participate, including in decision-making, throughout the commissioning cycle – including in design, implementation, evaluation and governance.
Include a strong focus on: relational recovery; family-inclusive practice; competencies regarding supporting people with substance use challenges; and the effects of disadvantage and discrimination upon mental health, within psychosocial Practice Standards for both NDIS and foundational support providers. Training should include First Nations, LGBTIQA+ and culturally and linguistically diverse understandings of mental health as well as culturally appropriate kinship and family inclusive practice. Ongoing professional development, supervision and engagement in communities of practice should also be requirements within the Practice Standards.

Require and resource both NDIS and foundational support providers to respond to natural disasters and extreme weather events, such as undertaking welfare checks and outreach. Ensure that the development of protocols, and how protocols are actioned if necessary, is regularly audited, and that the National Disability Supports Commission monitors compliance.
Include a range of adequate, tailored supports to families, carers and supporters of people with psychosocial disabilities, including but not limited to service navigation, advocacy, respite, brokerage, and support to re-engage or maintain activities outside the carer role.
Resource peer support and peer-led advocacy groups on an ongoing basis to promote their reach and sustainability, whilst safeguarding their independence and therefore capacity for individual and systemic advocacy. Investigate and address gaps in peer support and peer-led advocacy groups in rural areas.
Explore community-led commissioning approaches for psychosocial supports in rural and regional areas, for NDIS participants as well as foundational supports, to promote responsive, coordinated and accountable service provision that fosters social inclusion.
Embed genuinely diverse representation – including of people with psychosocial disabilities, families, carers and supporters, and geographic regions – within lived experience leadership of the:

NDIA;
new National Disability Supports Commission;
new Disability Advisory Council;
new Disability Outcomes Council;
new NDIS Review Implementation Advisory Committee; and
current and planned psychosocial steering committees and working groups, including to design the interface between psychosocial disability supports and the broader mental health system.

Ensure that the following initiatives are co-produced with people representing diverse disabilities, families, carers and supporters, and geographic regions;

development of the Disability Supports Quality and Safeguarding Framework;
design, testing and implementation of reforms to the NDIS participant pathway;
development of the Foundational Support Strategy;
the full commissioning cycles of foundational supports (including service design);
development of the Disability Support Outcomes Framework;
design of general and specialised navigator and support worker practice frameworks; and
provider Practice Standards.

Include mental health consumer and carer peaks within advisory bodies and relevant working groups throughout the reform process, to promote the breadth and depth of representation of, and accountability to, people with lived and living experience.
Ensure that the National Disability Supports Commission is independent, sufficiently resourced for assertive regulation, can initiate its own inquiries, and also actively considers the particular challenges within regional and rural areas.

Ensure that family, carers and supporters can also raise concerns and make complaints to the new National Disability Supports Commission.
Co-design outcome measurement frameworks and quality and safety metrics (including with people with psychosocial disability and family, carers and supporters), and which make visible various barriers to recovery posed by systemic and structural disadvantage.
Ensure that regular cycles of monitoring and evaluation of disability supports: also includes data about the experiences of families, carers and supporters; disaggregates data by region to illustrate geographic discrepancies; and produces publicly available reports.
Undertake gaps analyses of the various kinds of disability supports and track the progress of initiatives to address workforce shortages. This work should disaggregate data by region to illustrate geographic discrepancies and produce publicly available reports.
Measure how disability supports affect families, carers and supporters in relation to: their own health and wellbeing; returning to or maintaining paid employment; and community engagement more broadly.
Immediately develop a specific strategy, as part of broader workforce growth initiatives, to address the shortage of behaviour support plan practitioners in regional and rural areas, and capture data (disaggregated by geographic region) on access to behaviour support plan practitioners on an ongoing basis.
Ensure that the National Disability Supports Commission, as part of its broader work to reduce restraint, develops a specific strategy to proactively identify, investigate and also prevent instances of the chemical restraint of people with psychosocial disability.
Require the National Disability Supports Commission to publicly report, within regular specified timeframes, data (disaggregated by geographic region) on the rates of notifications of chemical restraint of people with psychosocial disability and, in each case, whether a behaviour support plan had been developed and followed, whether staff involved were appropriately trained, and the Commission’s response.
Acknowledge, within both disability and housing reform, that appropriate and secure housing is essential to positive outcomes for people with disability – and therefore also the efficacy of disability supports.
Adopt ACOSS’ recommendation for investment in social housing sufficient to meet demand over the long term, to enable people with psychosocial disability to have the housing security upon which recovery depends. Ensure that an appropriate proportion of stock is allocated to people with psychosocial disability and built within rural towns to avoid people having to move away from family and other local connections.
Ensure sufficient resources and training within NDIS and foundational psychosocial supports for tenancy sustainment support and housing advocacy. Work with the states and territories to also improve training and protocols for social housing providers, including to promote collaboration with psychosocial disability and mental health service practitioners.
Identify an appropriate range of tailored, supported housing models for people with psychosocial disability, undertake a gaps analysis of such, and increase provision accordingly. Ensure close integration with any similar state and territory initiatives, as well as strong engagement with

stakeholders such as the mental health sector and lived experience representation.

Include a focus on the quality and safety of supported residential services (SRSs) in the forthcoming National Housing and Homelessness Plan, and encourage state and territory governments to adopt in full the Royal Commission into Violence, Abuse, Neglect and Exploitation of

People with Disability’s Recommendation7.38:Minimumservicestandardsandmonitoringand

oversightofsupportedresidentialservicesandtheirequivalents.

Include affordable and appropriate housing for people with disability – including social housing – in a targeted action plan for housing under Australia’s Disability Strategy, as well as within the remit of the Disability Outcomes Council, to promote government accountability.
Action ACOSS’ recommendations on lifting income support, to prevent mental health deterioration and enable recovery for people with psychosocial disability, and families, carers and supporters who are in receipt of Centrelink payments.
Include consideration of a diversity of disabilities as well as regional, rural and remote contexts within Disability Impact Assessments of proposed transport, social security and other relevant policies.

Tandem recommends that the federal government;

Extends the funding for the National Disability Data Asset (NDDA), to increase visibility of relationships between social determinants of health and outcomes for people with disability, including discrepancies between metro and regional and rural areas.
Expands the National Disability Research Partnership (NDRP) and ensure that setting research agendas and undertaking research projects is genuinely co-produced with people with a diverse range of disabilities as well as families, carers and supporters, and includes those from regional and rural areas.
Release the National Stigma and Discrimination Reduction Strategy as a matter of priority. Ensure that this Strategy is well-coordinated with Australia’s Disability Strategy 2021-2013 and has a strong focus on regional and rural areas, including that grassroots community initiatives to tackle stigma in regional and rural areas are supported.

Introduction

This submission draws heavily upon the experiences, insights and ideas of the families, carers and supporters of people who experience mental health challenges, as well as a number of mental health and psychosocial disability workers, in regional and rural Victoria. The data from 105 responses from regional and rural Victorians to Tandem surveys in 2023 and 2024 were analysed.1 The submission has also benefited from the input of Tandem’s Support and Referral Line staff, in relation to their experience with regional and rural callers experiencing difficulties with the NDIS.

As a cohort, Australians with psychosocial disability as well as their families, carers and supporters experience systemic and structural disadvantage and discrimination, and correspondingly, poor health and wellbeing. The mortality rate of NDIS participants with psychosocial disability in Victoria is five times higher than those of the same age in the general population,2 and they also ‘experience lower community participation, employment and carer employment than other participants in the scheme’.3 Unpaid carers experience considerably poorer health and wellbeing outcomes than the general population, and mental health carers have still poorer outcomes than carers in general.4

Further, regional and rural Victorians have poorer health outcomes than those who live in metropolitan areas, including higher rates of suicide.5 The Victorian Department of Health explains that ‘The Index of Relative Socioeconomic Disadvantage shows that rural local government areas of Victoria are more likely to be classified as most disadvantaged, and that this relative disadvantage is having a significant impact upon health and wellbeing.’6 Tandem consultation findings suggest that inadequate service provision can contribute strongly to living in poverty. It is indicative that 23% of regional and rural respondents to a recent Tandem survey7 reported that their caring role meant they couldn’t study or work at all, and a further 21% couldn’t study or work full-time.

1 An online survey to inform this submission was run in early 2024, for those who had supported one or more people who had accessed, or attempted to access, the NDIS for psychosocial disability, and lived in rural or regional Victoria; 42 people responded (41 survey respondents; and an additional person requested a phone interview). Respondents lived across the five regional Mental Health and Wellbeing regions (Barwon South West; Grampians; Loddon Mallee; Hume; and Gippsland). 72% survey respondents supported one or more people who had a NDIS plan due to psychosocial disability; access had been attempted for the remainder. Data from an earlier survey (in 2023), which had a sole focus on the NDIS, was disaggregated; there were ten rural or regional respondents. Another survey (in 2023) included one question about the NDIS; this data was disaggregated and had 53 rural or regional respondents. All Tandem survey findings and quotes within this submission are from regional and rural Victorians. 2 Commonwealth of Australia. (2023). RoyalCommissionintoViolence,Abuse,NeglectandExploitationofPeoplewith Disability,FinalReport,Volume3: Natureandextentofviolence,abuse,neglectandexploitation, Final Report - Complete

Volume - formats | Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, p. 218

3 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport, Working

together to deliver the NDIS | NDIS Review, p. 128

4 Schirmer J, Mylek M and Miranti R. 2022. ‘Caring for Others and Yourself: 2022 Carer Wellbeing Survey – Full Data Report,’ Carers Australia and the University of Canberra, p. 6-7 5 Productivity Commission. (2020). MentalHealth,Reportno.95, Canberra, Inquiry report - Mental Health - Productivity Commission (pc.gov.au), p. 423

6 Victoria State Government, Department of Health. (2023). Rural and regional Victorians, Rural and regional Victorians |

health.vic.gov.au 7 Survey undertaken in 2023, which had 53 rural or regional respondents.

The submission first details the experiences and observations of regional and rural family, carers and supporters throughout access, planning, service provision, and review in relation to NDIS psychosocial disability support. While these NDIS processes and psychosocial service provision are often dysfunctional and damaging regardless of geographic location, Tandem consultation findings indicate an amplification within regional and rural areas. The submission then explores how challenges that are exacerbated within regional and rural Victoria, such as systemic and structural disadvantage, and mental health stigma and discrimination, can compound poor experiences of the NDIS.

The NDIS Review explained that improving outcomes for people with disability and ensuring the sustainability of the NDIS requires disability support to be considered ‘holistically — both inside the NDIS and beyond — and to consider what needs to be done to ensure people with disability are able to realise their rights as full citizens’.8 Tandem wholeheartedly agrees that a holistic approach in which barriers to full citizenship are identified and addressed is vital. This submission therefore provides detailed recommendations towards achieving: adequate, recovery focused disability support within and outside the NDIS that is integrated with related systems, reforms and initiatives; exploring commissioning models for disability support that build social capital and community; robust co-design, monitoring and active stewardship in partnership with people with lived experience; and addressing systemic and structural disadvantage, and discrimination

Experiences of the NDIS for psychosocial disability support as dysfunctional and damaging

A lack of understanding of psychosocial disability and of a recovery focus within access, planning and review

The NDIS Review found that the NDIA and partners, as well as psychosocial support providers in general, lack understanding of psychosocial disability, and that the ‘NDIS has not structured its processes or stewarded the provider market to support independence and personal recovery’.9 These findings were echoed strongly by Tandem survey respondents, who expressed concern that staff who determined whether access would be met often had very limited knowledge about mental health and psychosocial disability, as well as how mental health and physical conditions, and other intersectionality, can impact one another;

‘I was told because he could cook his food he was not eligible’

It was reported that ‘psychosocial required a lot more clarification and justifications [than when the disability was a] physical or development concern’. The access process was also described as ‘extremely deficit based’ and as setting people back in their recovery, and people felt ‘doubted’;

‘[The application process] caused distress to my son who constantly had all the negative aspects of his condition explained to many people. This then impacted on his mental health

8 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 18

9 Ibid., p. 128-129

and caused him to be very negative about life and his own ability to be independent’

‘They have to prove they need help in ways that actually make their situations worse’

The NDIS Review also found that plans are generally not geared towards providing the often long term, outcomes-focused support that is necessary to progress recovery.10 Correspondingly, Tandem survey respondents reported that;

‘The difficulties of people with psychosocial disability are not well understood by planners… Appropriate funding is often declined because of this’

‘NDIS has no idea what appropriate support for psychosocial is to begin with, it is not designed for it, there’s a deep seated attitude and stigma about mental health’

’90 pages of evidence was provided but because my son presents well in appearance and diction the planner didn’t review documentation thoroughly enough. Then the NDIS planner only provided a minimal amount of services with did not include Psychological services. Nothing that my loved one asked for which distressed him severely considering how long he had to wait and especially due to BPD [borderline personality disorder] and CPTSD [complex post-traumatic stress disorder] he suffers’

‘Goals are often not accurate, they r written to maximise funding and acceptance. It feels like selling your soul’

‘It is focused on a scaffolding that is about ticking boxes. The individual is fitted into a pre determined formula Rather than investigating what might be the best possible pathway for the individuals best possible outcomes’.

Access, planning and review processes as dysfunctional and distressing

The findings from Tandem surveys in relation to access, planning and review processes strongly align with those of the NDIS Review. The NDIS Review found that these processes can be highly complicated, confusing, adversarial, inconsistent, deficit-based, and involve heavy administrative loads, including great difficulty and expense gathering sufficient evidence and repeatedly demonstrating the severity of disability.11 These barriers can in effect exclude people from the scheme.12 The NDIS Review makes the important point that those most affected are ‘participants and families who have multiple forms of disadvantage. This means people with the greatest need often get very poor outcomes’.13

Access

Only one in five respondents to a recent Tandem survey reported a positive experience of applying to the NDIS. Various difficulties with the access process were reported, including:

clinical assessments and reports required being prohibitively expensive;
unreasonable volumes of evidence being required that clinical services aren’t resourced to produce and therefore applicants couldn’t obtain;

10 Ibid., p. 129 11 Ibid.,p. 255-256 12 Ibid.,p. 82 13 Bonyhady, B. & Paul, L (2023). WhatWeHaveHeard–Movingfromdefiningproblemstodesigningsolutionstobuildabetter NDIS, What we have heard report (ndisreview.gov.au), p. 7

needing to repeatedly have assessments to provide further evidence;
delays of many months in processing applications;
access only being granted after multiple applications had resulted in rejections;
a lack of information and explanation about the process from NDIS staff, including updates about the processing of applications;
incorrect advice being given that could lead to significant delays; and
inconsistency in decision-making. The process was described as ‘obstructive’, ‘very confusing’ and ‘overwhelming’, to the point that the mental health of applicants could deteriorate, the mental health of carers could also be impacted, and many had to abandon the application attempt.

‘We applied five times and it took many hours of rewriting all the details and producing many reports from many different allied/mental health personnel’

‘I explained the reason for application was schizophrenia not responding to treatment. Applied with what was sent out. After a month we had not heard anything so I started making calls. Noone could tell me anything. I asked for a manager after about 4 calls. She blatantly lied and said “there is a letter in the mail” that never arrived. I then sought out an NDIS advocate who told me to email. I did this and got an automatic reply. I then looked up the NDIS Act and sent an email saying which clause they were breaching in terms of timeframes. Finally we got a reply after this and he was rejected. I explained his situation and was told that he should be eligible but it did not translate well on the application form as there was nowhere to explain his particular difficulties. That is when I was told about the psychosocial assessment form! I was told to reapply with this which I did and he was approved reasonably quickly that second time but it was about 5 months from the original application and we were really struggling in that time after 3 years of illness and a dozen hospital admissions. The whole process just added to my stress load so much. The lack of support and knowledge from the general enquiry line was abysmal’

‘The NDIS is almost impossible for poor people to access. Requiring expensive reports to be written’

‘To be denied something that is vital to his health and wellbeing… creates more stress and anxiety. We did consider a tribunal review but they started sending letters from solicitors and taking about hearings – and it was too much for my son’

‘It was only when as part of the appeal process that the NDIS agreed to fund a OT report that we got some progress. If we had known about those options, we may have been able to save a couple of years’

Planning

A lack of support to understand how to use funds to implement a plan was identified within Tandem survey responses;

‘I had no idea what I was doing. What a plan involved, or how it would assist my son. We did not use the allocated funds for a long time because I did not understand how to use it. I really had no idea how the whole system worked’

It was also explained that inadequate funding in plans to meet the needs and to further the goals of people with psychosocial disability can mean that plans are of little to no use.

‘Support coordinators and psychosocial recovery coaches are rarely provided with sufficient funding to meet the needs of participants who require high levels of support to engage’

‘The first plan my daughter got had so little funding that the plan was useless and we had to have a review to get more funding so my daughter’s goals could be funded.’

‘the current plan did not have enough resources by means of funding to actually fund what the NDIS person agreed to fund. For example she got 4 hours of groups per week and was meant to have a worker with her but the funds were not there when calculated by the number of weeks per funding given, so my daughter did not attend groups’

Despite their vital importance, insufficient funding can also mean that support coordination and respite cannot be accessed at all; it was suggested that this lack can be exacerbated in rural and regional areas where other forms of support are limited.

‘Not knowing what is available and how to find out how to access’

‘The initial plan was made with minimal questions from the worker and not intensive enough for my sons needs as he did not try to get a good understanding of what was happening’

‘it depends which planner is involved, some are very understanding. However others are dismissive and don’t seem to understand mental health difficulties or the stress on unpaid carers’

Review

Many respondents reported that reviews were significantly delayed or denied, including when requested due to an acute deterioration in mental health or in otherwise urgent circumstances, and were dysfunctional;

‘Have put in for a COC [change of circumstances]… which was a high priority and still nothing. The participant is homeless’

‘Every plan review I have attended with psychosocial participants has been a debilitating experience for the participant and they are often treated as though they are making things up. They are constantly told they cannot be funded for certain things and that they don’t need certain supports. The most difficult thing for these participants is to ask for help and then they are told they can’t have it’.

‘Reviews have been unnecessarily anxiety provoking, carers have been left wondering what they will do if the current level of funding is not sustained for example, will they have to reduce their paid employment to provide increased level of care. Individuals have been anxious about “losing supports” as a result of plan reviews’.

‘Often services have to continually provide the same information over and over, when little has changed’

Poor experiences of NDIA staff

Inquiries have established that the NDIA workforce has a deficit of appropriate knowledge and skills.14 Although a few Tandem survey respondents provided examples of NDIA staff being knowledgeable, helpful and respectful, the predominant experience of NDIA staff was poor. Giving incorrect advice, not communicating with participants in a way that could be understood, and making file errors resulting in a lack of funding for support that took years to rectify, were all reported by

14 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review,p. 255-256

survey respondents.

‘the person assisting gave incorrect advice and hope’

‘It was not clear as to what my son may be eligible for as the NDIS representative was not knowledgeable’

‘In reviews the person you see should be nice and respectful and not talk down to us, point her finger at my daughter and tell her she does not have a physical disability… We were both crying, she did not answer our question… said she did not have reports but I saw them in her pile of paperwork’

‘many ndis staff do not know how to relate to participants and they make them uncomfortable. Particularly people with psychosocial disabilities’

Commodification at the expense of quality and ethical practice

Responsibility for service quality, and safe and ethical business practice, has in effect been displaced onto NDIS participants and their families, carers and supporters, to their significant detriment. The NDIS Review explains that providers are incentivised for quantity rather than quality due to reasons such as the ‘fee for service’ model, and there is a deficit of providers with psychosocial competencies.15 Moreover, due to a lack of oversight mechanisms ‘the NDIS Commission cannot effectively monitor the market or proactively intervene to prevent harm and promote quality improvement, and has fewer options for taking action against providers if something goes wrong’.16

Tandem survey respondents expressed strong concern that providers are, in effect, incentivised towards maximising profit rather than providing the time and skill required for positive outcomes;

‘I was hopeful and we thought that finally the person was going to get the assistance… [we] put the needs and goals forward which was met with promises… However… it became aparent that as soon as an NDIS plan is mentioned it seems to be considered an opportunity for maximum fee and slap dash service. It has been so with the support coordinator who sends a text now and then but bills 100s of dollars monthly directly to the NDIA’

‘it’s about getting the package and putting in any support worker… doing the hours and making the money rather than coordinating services and providing quality’

‘even ones that profess to be not for profit, maximise their payment entitlements and charge for services that they say they provide but just being in attendance does not translate into providing a specific service from a properly trained practitioner’

Providers charging for services that were not delivered at all was reported;

‘Service providers make times, dont turn up but bill for the time anyway. It appears to be unregulated and an outright rort bordering on fraud’

‘My sons funds are self managed and I have often been charged for no service. Many of the providers are unethical in their practice.’

Other examples included: charging for attendance and travel costs for multiple home visits due to the

15 Ibid., p. 168 16 Ibid., p. 208

support coordinator repeatedly forgetting to bring the service agreement; and charges for kilometers travelled when the participant was driving their own car.

In addition to participants not receiving required support, concern was expressed about the psychological impact of being taken advantage of;

‘Being ripped off and pursued by providers often destroys people’s soul and trust’

This may be particularly detrimental for participants with psychosocial disability; a respectful working relationship with a recovery coach whom the participant can tell cares about them and their goals can be essential to building self-esteem and progressing recovery.

The NDIS Review heard that many people find that ‘the NDIS Commission “lacks teeth” to respond to concerns about provider conduct, and does not do enough when faced with inappropriate or illegal conduct’.17 Tandem survey respondents also expressed consternation about a lack of accountability;

‘Feedback on poor, corrupt providers has also disappeared into the ether’

‘I know people that overcharge and they’re getting away with it… I’ve seen that a lot’

Furthermore, nine times as many survey respondents did not believe that NDIS psychosocial services are reasonably priced, as those who believed the cost was reasonable. This aligns with the findings of the NDIS Review, which stated that ‘Price caps have become price floors.’18

‘Service providers seem to increase prices if they know the person has NDIS funding’

It is important to note that due to thin markets, people in regional and rural areas are often unable to change providers and may not feel able to report malpractice due to the fear of losing any kind of support.

Lack of relational recovery, family inclusive practice, and opportunities to build social capital

The efficacy of psychosocial disability support often greatly depends on the facilitation of ‘relational recovery’, which recognises that identity and wellbeing cannot be separated from social context. A relational recovery practice approach therefore actively supports relationships and community connectedness to be built and sustained.19 However the NDIS Review found that, ‘Critically, the focus on market competition has neither driven inclusion nor helped to nurture connections with family, friends and community. In fact, sometimes the exact opposite has occurred’.20

A number of Tandem survey respondents were worried about a lack of social group provision and other opportunities for the people they support to develop social connections;

‘Repeated requests for an opt-in letter inviting participants with similar conditions to meet each other have been ignored… It’s all constipated by privacy, so participants remain lonely

17 Ibid., p. 230 18 Ibid., p. 230 19 Price-Robertson, Obradovic, & Morgan. (2016). Relational recovery: Beyond individualism in the recovery approach. AdvancesinMentalHealth, 15(2). DOI:10.1080/18387357.2016.1243014; Meltzer, A. & Davy, L. (2019). Opportunities to enhance relational wellbeing through the National Disability Insurance Scheme: Implications from research on relationships and a content analysis of NDIS documentation. AustralianJournalofPublicAdministration, 78, p. 250-264 20 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 28

and isolated and carer voice is not heard.’

The NDIS Psychosocial Disability Recovery-Orientated Framework states that ‘The support families and carers provide in helping participants to reach their recovery goals is recognised and valued. Family and carer inclusive practice is an important element of recovery-oriented practice’. 21 However only 9% of regional and rural Tandem survey respondents ‘agreed’ or ‘strongly agreed’ that ‘The NDIS engages well with unpaid carers who support people with mental health challenges’; 62.5% ‘disagreed’ or ‘strongly disagreed’.22 Their experiences suggest that family, carers and supporters are often not included with access, planning, review, and psychosocial support provision, to the detriment of themselves as well as participants.

Leaving informal support out of the frame can lead to inaccurate assessment of functioning and support needs;

‘NDIS. Didn’t pass my son. They seem to think that he is coping ok. They didn’t take into consideration that I do many things for him. He has severe schizophrenia. Anxiety and depression.’

‘not listening to Carers feedback with regards to the support needed for the person I care for and not taking into consideration the amount of care I provide to the person I care for’

Exclusion of family, carers and supporters can create barriers to ‘natural safeguards’ and support to engage with and advocate to services;

‘have not had any contact with the recovery coach… No attempt to contact me as the carer has been made. In fact I was just called by my son who is so lonely and desperate for someone to care and help him’

Family, carers and supporters can also miss out on being linked to vital supports and resources for themselves;

‘The ndis seems to want to separate the needs of the person and the carer and only attend to the needs of the individual with the disability’

‘I also think that it is reasonable for unpaid carers who have a live in person they care for should be easily able to access practical support (cleaning and/or gardening) etc as carers don’t have the time and/or energy to do these tasks after their caring roles. This side of care is often not considered (or funding declined) by the NDIS’

A survey response that conveyed a very different experience illustrates some of the benefits of family inclusive practice;

‘My most recent experience with a NDIS LAC in rural Vic was fantastic! I truly felt heard and respected in my communications in a review for my loved one. This was a very empowering experience and made me feel confident in my role as my loved one’s chosen Nominee’

Lack of coordination and integration with health and social services

Effective psychosocial disability support often entails strong communication and collaboration with

21 National Disability Insurance Scheme. (2021). NationalDisabilityInsuranceScheme-PsychosocialDisabilityRecovery

OrientatedFramework, Mental health and the NDIS | NDIS, p. 7

22 NB. Other respondents indicated that the question was not applicable.

mental health and various other services. The NDIS Review found, however, there are ‘significant problems with how the NDIS interacts with specific mainstream service systems… [which] can put the health, wellbeing and safety of people with disability at significant risk’.23 Particular note was made of the lack of an integrated complex care approach between the NDIS and the public mental health system, which contributes to unnecessarily long hospital admissions and other poor outcomes.24 As the Brotherhood of St Laurence explains; ‘where services cater to disadvantaged people with multiple, complex needs, competition between providers can worsen system fragmentation and create disincentives for agencies to work together to achieve better outcomes.’25

A rural NDIS psychosocial support worker with over 20 years of mental health sector experience and mental health carer peer support group member ‘Sue’ recently contacted Tandem to express strong concern about the NDIS and broader service landscape in her area. One particular worry for Sue is the current deficit in coordination between services. She explained that service provision has become fragmented since the NDIS rollout, to the significant detriment of participants. For example, a participant Sue supports continues to live in squalid conditions as her various services don’t communicate and collaborate as would be needed to address the issue. Sue explained that;

‘services aren’t networking enough, they’re not talking to each other, it’s siloed, the NDIS workers aren’t talking to the GP, to mental health, to housing, to the family… it’s changed, we all used to talk to one another and nut out a problem’

Systemic and structural disadvantage, and discrimination, as exacerbated within regional and rural

Victoria

People with psychosocial disability and their families, carers and supporters often face a myriad of compounding systemic and structural disadvantages and other difficulties that are particular to, or exacerbated within, regional and rural areas. Lack of health and other services, long distances from the services that do exist, socioeconomic disadvantage, mental health stigma, lack of transport and access to technology, and natural disasters ramify one another, to the great detriment of people who already face the inherent challenges of psychosocial disability.

A severe lack of skilled psychosocial support, allied health, and clinical and community mental health services

The pressing issue of ‘large and persistent’ NDIS workforce shortages, particularly within regional and remote areas, 26 as well as the shortfall of allied health supports within regional and rural Australia, was acknowledged by the NDIS Review.27 Also discussed was the ‘major shortage of psychosocial supports outside the NDIS’, including the Productivity Commission’s estimate in 2020

23 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p.67

24 Ibid., p.130 25 Brotherhood of St Laurence. 2017. Reformstohumanservices:ResponsetotheProductivityCommission, The mission of the

community service sector in a time of change | Brotherhood of St. Laurence (bsl.org.au), p. 57

26 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 193

27 Ibid., p. 180

that ‘154,000 non-participants with severe and persistent mental illness were missing out’ across

Australia.28

The NDIS Review also brings attention to the significant shortages of clinical and community mental health services, and the importance of people with psychosocial disability having concurrent access to these services as well as psychosocial disability support.29 The Royal Commission into Victoria’s Mental Health System acknowledged that the system is ‘broken’; mental health services are often difficult, or can be impossible, to access, including in mental health crises, and the quality of care can be deficient to the extent of causing harm. Consumers and their family, carers and supporters are therefore placed in untenable situations, often for many years, to their great detriment.30

Tandem survey respondents expressed strong concern about the significant shortages of these services within regional and rural areas, and the ramifications upon the people they support. Respondents explained that access to the NDIS can be significantly delayed due to waitlist lengths for the clinical appointments required to gather evidence;

‘the wait time to get into a child psychiatrist or paediatrician is at least 6 months, then you have to wait many more months to get into other specialists like psychologist or OT just for basic assessments, then wait to get back into the paediatrician. It can take in excess of a year just to get the assessments necessary to apply to the NDIS. This is too long to leave people without vital support.’

A complete absence of local clinicians was also reported;

‘No option for mental health OT locally. Waitlists dont exist for this support’.

‘We have had to travel 7 hours each time we have needed an assessment’.

Indeed those who cannot afford assessments from private clinicians may not be able to apply to the NDIS at all;

‘not everyone can afford to get a diagnosis’

‘could not afford the supporting reports that are required and the public system is almost impossible to access in rural areas’

‘No doctors/psychiatrists/psychologists are taking new patients so finding one that doesn’t cost or hasn’t got big waiting lines is impossible.’

Not having a regular GP was also a barrier, which reflects a Productivity Commission finding that ‘consumer access to GPs is generally more limited in rural and remote areas’.31

‘If a person hasn’t got a history with a GP (which is very common) then accessing the NDIS is a massive problem…people fall through the cracks’.

Access to the NDIS could also in effect be denied due to mental health treatment having been inaccessible, which then meant there was no funding to assist with transport to access treatment;

28 Ibid., p. 131 29 Ibid., p. 70 30 State of Victoria. (2021). RoyalCommissionintoVictoria’sMentalHealthSystem,FinalReport. Accessed from https://finalreport.rcvmhs.vic.gov.au/ 31 Productivity Commission 2020, Mental Health, Report no. 95, Canberra, Inquiry report - Mental Health - Productivity Commission (pc.gov.au), p. 455

‘Instant rejection based on “not being fully treated” however is unable to get that sort of medical treatment in such a rural area.’

‘rejection based on being “not fully treated” is a catch 22 because people need help and assistance getting the treatment they need, e.g. driving to appointments as they are further away. The system isn’t designed to actually support them.’

For Tandem survey respondents who supported someone who had been granted access, only 2.5% had a ‘very positive’ and 12.5% had a ‘positive’ experience of being able to find appropriate NDIS psychosocial service/s without long waiting lists. Many reported an absence of alternative provider options, or that no service at all was locally available;

‘the wait is distressing him to the point he is losing hope’ ‘Services are non existent’

‘In the rural and remote area where I work, the NDIS participant will often have funds to purchase certain services (such as a psychosocial recovery coach) however there are no support workers’

This reflects the NDIS Review’s finding that the introduction of NDIS markets has led to ‘poor, or even no services’ in some cases.32 Tandem survey data also strongly supports the NDIS Review’s conclusion that ‘there are currently too few providers with psychosocial competencies’ and that the ‘NDIS is not stewarding the market to deliver a recovery-focused approach’.33

‘Support services in rural areas often have untrained and unskilled support workers “filling shifts” rather than workers who understand recovery-focused practices. Very few support services have an understanding of dual diagnosis, for example, schizophrenia and intellectual disability. This can make it difficult for services to work with the person on relapse prevention plans or to identify early warning signs or to seek supports if the person’s mental health deteriorates.’

‘Some of the workers literally just sit around having coffee or taking him for a drive, just passing time when he is meant to be trying to reintegrate socially’

‘It is beyond difficult to access suitably skilled providers for participants with psychosocial disabilities. Collaborative multidisciplinary practice is often hampered by the lack of skilled professionals to meet the specific needs of participants with psychosocial disabilities’

Indeed, not only can a lack of training forestall recovery, it can also directly harm the mental health of participants;

‘I asked for a male trained mental health worker. The worker they sent was employed as a gardener but he was matched with my son because he was around the same age. He had no idea how to interact with someone with anxiety. Nor did he have any idea of appropriate activity. He took him out to a shopping centre and walked him around for 1.5 hours. My son came back in a highly agitated and exhausted state which took him days to recover from’

‘My son has been very damaged by my inability to source appropriately qualified support staff’

32 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 29

33 Ibid., p. 129

‘Untrained people doing specialised work with no idea of the individual clients needs often causing more distress’

Concern was also expressed about high staff turnover;

‘Frequent changes in staff members can be de-stabilising for individuals and their families and carers’

‘He has had to change support workers twice in less than a year so that has been hard for him. Building trust is a huge issue with mental health clients’

Frequent staffing changes can be particularly problematic for recovery coaching, to which a strong working relationship is vital.

Six respondents to a recent Tandem survey supported one or more people who access or attempted to access NDIS psychosocial disability support, live in regional or rural Victoria, and also identify as Aboriginal or Torres Strait Islander. Their insights echo the findings of the NDIS Review, whereby, particularly in rural and remote areas, culturally appropriate NDIS services for First Nations participants are scarce, which ‘often means First Nations people need to choose between supports that are not culturally safe or not getting supports at all’;34

‘Culturally appropriate V KPI’s and agency interests’

‘Indigenous services at capacity with extensive waitlists’

Of grave concern is the potential for a lack of specialised expertise to lead to restrictive practices. The NDIS Review reported that restrictive practices are widely used and continue to grow, in part due to a lack of funding for behaviour support plan development and implementation.35 Tandem survey data suggests that shortage of behaviour support practitioners in regional and rural Victoria exacerbates this funding issue. A respondent explained that;

‘Service providers will often use GPs to prescribe medications that are used as chemical restraints without individuals having positive behaviour support plans or understanding reporting requirements for such medications. For example, a service provider attends the GP with the person and asks for diazepam for the individual. Instead of using the person’s positive behaviour support strategies – often these have not even been developed because the NDIS Support Co-Ordinator cannot find a behaviour support practitioner.’

The NDIS Review has acknowledged that ‘a failure of competition and regulation has opened the door to exploitation and abuse’.36

Although the Victorian government has committed to implementing the recommendations of the Royal Commission into Victoria’s Mental Health System, which handed down its final report in 2021 and included a focus on addressing workforce shortages in regional and rural areas,37 Tandem survey responses suggest significant progress still needs to be made;

34 Ibid., p. 186 35 Ibid., p. 218-222 36 Ibid., p. 28 37 State of Victoria. (2021). Chapter 24: Supporting the mental health and wellbeing of people in rural and regional Victoria, in

RoyalCommissionintoVictoria’sMentalHealthSystem,FinalReport,Volume3:Promotinginclusionandaddressinginequities,

Parl Paper No. 202, Session 2018–21 (document 4 of 6). Accessed from https://finalreport.rcvmhs.vic.gov.au/

‘Mental health services are lacking, Access to a Psychiatrist is almost non-existent… Unless it is an absolute crisis with lives at risk. Otherwise we are told to go to emergency. For those with Mental Health conditions a chaotic, busy emergency room with a 6 to 8 hour wait is not even a viable option’

One respondent suggested that NDIS participants were ineligible for a particular public mental health service;

‘HOPE [Hospital Outreach Post-Suicidal Engagement] program new initiative will not support clients on the NDIS. A directive of Vic Health Dept. This is so wrong where a suicide is looming’

The extent of the loss of community mental health services as a consequence of the NDIS roll out has been devastating within Victoria. Research has described the myriad detrimental effects of this support ceasing for non-NDIS participants upon both people with psychosocial disability and their families, carers and supporters, including to their health.38 Tandem survey data suggests that some within regional and rural Victoria may in fact not be able to access any health or disability services at all;

‘Unable to access appropriate services to support no capacity with public health services private are unaffordable’

Another consideration is that of people with psychosocial disability who require significant support however do not, for various reasons, wish to engage with the NDIS;

‘My adult son does not have an NDIS Package because he will not apply for one, he has Anosognosia and so has no insight into his serious mental health condition. I cannot apply on his behalf unless I am his legal Guardian, and as the process to gain Guardianship is so difficult, I can only watch on as his mental and physical health deteriorate without the treatment and supports that he requires’

‘He would qualify for the NDIS but because of the trauma caused [by the mental health system] there is no way he will want to relive those traumatic years by answering the multitude of questions NDIS ask; so NDIS is out of the question which leaves my husband and me who are in our 70’s to ‘keep on keeping on’ and hope for the best’39

This issue further highlights the vital importance of accessible, inclusive mainstream and foundational supports, including within regional and rural areas.

Barriers to access due to lack of transport and technology

Insufficient transport and technology support appears to be a barrier to accessing psychosocial support for many participants in regional and rural Victoria. Twice the number of Tandem survey respondents answered ‘no’ rather than ‘yes’ to the following question: ‘In general, can the NDIS participant/s you support access their psychosocial service/s in a way that works for them

38 Smith-Merry, J., Hancock, N., Bresnan, A., Yen, I., Gilroy, J. & Llewellyn, G. (2018) Mind the Gap: The National Disability Insurance Scheme and psychosocial disability. Final Report: Stakeholder identified gaps and solutions. University of Sydney: Lidcombe, Report identifies NDIS gaps for people living with mental illness - The University of Sydney; Loddon Mallee Mental Health Carers Network. SubmissiontoMentalHealthProductivityCommission, Submission 52 - Loddon Mallee Mental Health Carers Network (LMMHCN) - Mental Health - Public inquiry (pc.gov.au)

39 Loddon Mallee Mental Health Carers Network. SubmissiontoMentalHealthProductivityCommission, Submission 52 -

Loddon Mallee Mental Health Carers Network (LMMHCN) - Mental Health - Public inquiry (pc.gov.au)

(i.e. face-to-face if preferred, not having to travel far etc.)’. Difficulties included services not travelling to visit participants as well as participants being unable to travel to, and therefore engage with, services due to insufficient funding for transport in their plans, as well as public transport not being available. As a result, participants can require family, carers and supporters to drive them to frequent appointments, or they are unable to attend if their family, carer or supporter/s are ill or otherwise unavailable. Participants can require family, carers and supporters to drive them to frequent appointments and therefore cannot attend if they are ill or otherwise unavailable.

‘Participants will spend hours travelling to access appropriate supports or be unable to engage as travel to participants is too costly given limitation of price guide’

‘Participant needs to travel 4 hours to get help and there is not always seats on the train’

It was also pointed out that some participants are unable to travel or use technology, including during periods of being acutely unwell, or do not have a device. Furthermore, in some regional and rural areas the potential to access services via phone or internet is not an option, as connectivity can be unreliable or even completely unavailable in ‘black spots’; needing to travel in order to access the internet was mentioned. Moreover, it is important to note that many people strongly prefer in-person support, and that phone or online sessions may not be conducive to effective provision.

Structural disadvantage exacerbating mental health challenges and preventing recovery

Socioeconomic disadvantage leads to poorer health outcomes in general for regional and rural Victorians, including, more specifically, worse mental health outcomes. The Royal Commission into Victoria’s Mental Health System acknowledged that people in regional and rural areas are ‘disproportionately affected by social determinants of poor mental health. When coupled with a lack of services and supports, people’s mental health and wellbeing can suffer.’40

In speaking with Tandem, rural NDIS psychosocial support worker ‘Sue’ stressed that poverty inhibits progress towards recovery. Sue explained that for the participants she supports who receive Centrelink income, the inadequate payments are;

‘100% affecting their mental health… if you can’t afford bills, food, can’t go out… they’re stressed, they can’t eat properly’

Tandem survey respondents also mentioned ‘undue stress [caused by] Centrelink and job agency demands’, and experiences of Centrelink as ‘judgmental’ and ‘punitive’, in part due to a lack of staff training in engaging with people experiencing mental health challenges and their families, carers and supporters. This compounds the fact that ‘Commonwealth income supports have not risen as much as the cost of rent in recent years. This has caused severe housing stress amongst low income households and left them vulnerable to homelessness’.41

Australia’s longstanding, accelerating housing crisis has dire consequences for people with psychosocial disability and their families, carers and supporters in regional and rural Victoria. The NDIS Review acknowledges the disproportionate effects that the housing crisis has upon people with

40 State of Victoria. (2021). RoyalCommissionintoVictoria’sMentalHealthSystem,FinalReport,Volume3:Promotinginclusion andaddressinginequities, Parl Paper No. 202, Session 2018–21 (document 4 of 6). Accessed from https://finalreport.rcvmhs.vic.gov.au/, p. 446 41 Legislative Council Legal and Social Issues Committee, Victorian Parliament. (2021). InquiryintohomelessnessinVictoria: Finalreport. Reports (parliament.vic.gov.au), p. 69

disability, ‘particularly those with high support needs, who are more likely to have fixed or low incomes.’42 In 2020, up to 11,000 Victorians with severe mental illness were experiencing homelessness and a further approximately 20,000 were residing in inadequate or unsustainable housing.43 These figures will have since grown due to the subsequent worsening of the housing crisis. It is indicative that the Royal Commission into Victoria’s Mental Health System found an increasing reliance on supported residential services (SRSs), despite various inquiries having raised grave concerns about substandard, unskilled care, and sexual, physical and financial abuse.44

Only 14% of Tandem survey respondents indicated that the housing of the people they support, who experience psychosocial disability and live in a regional or rural area, is appropriate and affordable, whereas 39% indicated it was not.

‘Extremely overpriced rent in the area and lack of affordable housing’

‘This is a huge issue as there is no housing available or support services to help keep the clients safe. The person would have to move [from their small town] to Bendigo or a larger town [to access support services] but there is no housing available from Mildura to Bendigo’

Loddon Mallee Mental Health Carer Network (LMMHCN) and La Trobe University undertook a study into the lack of appropriate and accessible housing for people experiencing mental health challenges in Victoria’s Loddon Mallee region, and the consequences for both them and their families. The study found examples of people in regional and rural areas sacrificing their own financial and housing insecurity to provide housing for the family members they support.45 This was echoed within Tandem’s survey findings;

‘I built a specially modified home for my son and also built a home all paid for, for my daughter. Unfortunately, this has left me in debt and I had to sell my home and move further inland into central Victoria’

As some people who experience psychosocial disability do not for various reasons engage with psychosocial support or mental health services, housing that is accompanied by formal support (whether on-site or via outreach) may not be applicable.

‘My son isn’t interested in engaging with support… It’s not as simple as, oh, okay, so if there was a place that was available that was affordable, and he had somebody working with him regularly around independent living skills, it would all be fine. He wouldn’t accept that … he would find that quite humiliating’.46

Tandem survey respondents were also asked; ‘If the person/people you support receives NDIS psychosocial support and also needs help to access or maintain housing, how adequate has the NDIS been in meeting this need?’ Just over 60% indicated that this type of support was needed, yet only 8% reported it was adequate, while 39% found it inadequate.

‘No help at all with housing’

42 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 148

43 State of Victoria. (2021). RoyalCommissionintoVictoria’sMentalHealthSystem,FinalReport,Volume2:Collaborationto supportgoodmentalhealthandwellbeing, Parl Paper No. 202, Session 2018–21 (document 3 of 6). Accessed from https://finalreport.rcvmhs.vic.gov.au/, p. 401 44 Ibid., p. 407-408 45 Theobald, J., Sanders, R. & Lehmann, J. (2016). The perspectives of carers on housing needs and mental illness: a Loddon Mallee Mental Health Carers Network housing project. https://doi.org/10.26181/22240174.v1 46 Ibid., p. 34

‘Didn’t care that participant has been made homeless’

‘I am an ageing Carer who would like to see my son settled into appropriate accommodation before I am no longer able to care for him… He will still need Supports but to encourage his independence is of the utmost importance. I do feel that because he lives with me 24/7 that NDIS don’t see the importance of his need for suitable accommodation. My son is quite stressed about where he could live. He is aware that my health is not good and worries about what will happen to him’.

One respondent explained that support to find affordable housing couldn’t be effective regardless, because of the lack of stock;

‘You cannot put people in homes where there are none!’

A clear, direct link was made between housing insecurity and poverty, and mental ill health;

‘We are in the midst of a housing crisis all my participants are under financial stress with rent accounting for nearly 75% of their income. For those that are trying to access housing the impact is profound with many having further hospitalisation as a result’

The following example, drawn from the LMMHCN and La Trobe University study, illustrates how the lack of adequate housing, transport, support services and income support can interrelate in regional and rural areas;

Laura explained that Tom had a long history of residing in substandard housing and homelessness, which included sleeping rough. These conditions contributed to Tom becoming frequently psychotic and receiving admission to psychiatric inpatient units several times a year in Mildura and Bendigo. He was, as Laura recounts, often discharged from hospital to inappropriate housing or homelessness without support: It’s cruel how he has had to live … once I went up there and he was living out a dirt track, going towards the river, in an old caravan with three other people in the same condition as what he is … so not able to get into to town or anything like that. He got, I think it was a $50 food voucher and it was 45 degrees’ heat … I’d been up there for about eight days trying to organise this, and that’s what they gave him in the end … Another time I went there screaming for somewhere for him to go and they gave me a tent and a sleeping bag.47

A carer in the Loddon Mallee said of her son’s experience of living in a small town, having high travel costs, and having to move three times in the past year;

‘The housing is a huge issue and I think it compounds their problems… their recovery is so much slower because of this extra stress and worry. With that is the financial stresses and worry which [is greater] because of the distance’48

The LMMHCN make the important point that the housing crisis and lack of professional support in rural communities creates pressure for people to move to a regional centre, thereby distancing them from family support.49

47 Ibid., p. 36 48 Ibid., p. 35

49 Loddon Mallee Mental Health Carers Network. SubmissiontoMentalHealthProductivityCommission, Submission 52 -

Loddon Mallee Mental Health Carers Network (LMMHCN) - Mental Health - Public inquiry (pc.gov.au)

Stigma and discrimination

Although rural and regional communities can be perceived as closer knit than metropolitan areas, this is often not the experience of people with psychosocial disabilities and their families. The strength of stigma attached to mental ill health in Victoria’s regions has been emphasised in various Tandem consultations as well as in the LMMHCN’s research and policy work.50 The LMMHCN explains that ‘Stigma is a large problem in rural communities affecting both patient and carers, causing the carer/patient to be isolated and retreat from the community activities’.51 Rather than being able to benefit from and contribute to rural communities, many are excluded from rental accommodation and the broader community.52 As a participant in the LMMHCN and La Trobe University’s housing study explained;

‘Carers are still suffering isolation and poor health … Small town syndrome (stigma) for carers who live in rural towns is very real; they suffer in silence and eventually become a shadow in their own community’.53

As a barrier to community inclusion, stigma undermines progress towards recovery, and therefore also the utility of psychosocial supports. Indeed, stigma can lead to people avoiding applying to the NDIS,54 as well as contributing to lower rates of access to mental health services in regional and rural areas than in urban areas.55

Mental health stigma can compound other forms of discrimination. A Tandem survey respondent mentioned; ‘LGBTQI. Support non existent for adults in the area, no groups and lots of discrimination’. This reflects an important point made by the NDIS Review – that women, First Nations people, LGBTIQA+SB people and culturally and linguistically diverse people who also experience disability face ‘intersecting layers of individual and structural discrimination impacting all aspects of their lives’.56

Detailed recommendations

Adequate, recovery focused psychosocial disability support within and outside the NDIS that is integrated with related systems, reforms and initiatives

50 Theobald, J., Sanders, R. & Lehmann, J. (2016). The perspectives of carers on housing needs and mental illness: a Loddon Mallee Mental Health Carers Network housing project. https://doi.org/10.26181/22240174.v1

51 Loddon Mallee Mental Health Carers Network. SubmissiontoMentalHealthProductivityCommission, Submission 52 -

Loddon Mallee Mental Health Carers Network (LMMHCN) - Mental Health - Public inquiry (pc.gov.au) 52 Ibid. 53 Ibid. 54 Mellifont, D., Hancock, N., Scanlan, J.W. & Hamilton, D. (2023). Barriers to applying to the NDIS for Australians with psychosocial disability: A scoping review. AustralianJournalofSocialIssues, 58, 262–278, https://doi.org/10.1002/ajs4.245, p. 269 55 Productivity Commission 2020, MentalHealth,Reportno.95, Canberra, Inquiry report - Mental Health - Productivity Commission (pc.gov.au), p. 423 56 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 31

An approach by the NDIS to psychosocial disability that promotes recovery and family inclusive practice

Tandem supports the NDIS Review’s recommendations for major changes to the approach to psychosocial disability, such as:

a new psychosocial disability pathway that includes tailored and improved access, assessment, planning and specialist Navigation, wherein NDIS staff and Navigators have appropriate specialised training;
psychosocial disability supports that are recovery-focused, responsive to episodic needs, trauma-informed, and family-inclusive;
a significant increase in psychosocial supports outside the NDIS as well as improved access to clinical mental health provision;
early intervention, and support that is well coordinated with the broader mental health system and includes integrated complex care coordination;
a requirement that psychosocial providers – including of Navigation – must be registered and meet a new support-specific Practice Standard that includes workforce competencies (such as those outlined in the Victorian Mental Health and Wellbeing Workforce Capability );
investment in training for the psychosocial support workforce; and
improved support for the families of people with psychosocial disability; and
integration of psychosocial disability supports with broader mental health reform. Other proposals within the NDIS Review’s final report that Tandem wishes to highlight and endorse are;
an improved, simplified access process, in which any additional evidence is government funded;
an assessment process that: focuses on support needs and goals rather than ‘proving deficits’; involves significant people in the participant’s life where appropriate; enables the participant to elect to break the assessment up over a number of sessions, at a location where they feel most comfortable; and is undertaken by qualified allied health practitioners with disability expertise;
Navigation for people both in and outside the NDIS that does not involve individualised, fixed budgets and that is: consistently available and responsive to fluctuating need; proactive (with capacity for outreach, ‘progress check-ins’, and advocacy); supports the setting and achievement of goals; and that finds and coordinates services (including mental health and housing services);
local design for Navigation function, to enable responsivity to each particular local area;
individual Navigators embedded in, and with a strong understanding of, local communities and service systems, with community capacity building as part of their role;
foundational supports that are widely available and outcomes-focused;
expanding the peer workforce (consumer and carer), and mutual peer support;
providing more support for NDIS nominees with their role;
exploring how to shift away from the fee-for-service model to an approach that promotes a strong focus on outcomes; and
commitments and targets for the accessibility and inclusivity of both foundational and mainstream services within a new Disability Intergovernmental Agreement.

Tandem wishes to highlight the following declaration by the NDIS Review; ‘A good life is one enriched by connections to family, friends and community. These connections need to be nurtured by the scheme. This means individualised, market-based delivery needs to be balanced

with approaches that build social capital’.57

The NDIS Review’s vision for psychosocial disability support aligns with what Tandem has heard from families, carers and supporters;

‘greater care for the individual and less for their own KPI achievements’

‘Streamline, more collaborative, less “power over” individuals from planners and less uncertainty for carers’

‘get them in early so they do not get worse waiting for the help that they so desperately need’

‘the person asking the questions should have a good knowledge of psychosocial disability so there would be an understanding and not an interrogation’

‘staff who actually understand the barriers’

‘should be trained in how to listen, rather than just getting through the process’

‘[For planners to have] [q]ualifications and experience, trauma informed (not the pretend kind) Time, consultation, checking in with drafts with participant’

‘team approach’

‘Make funding for social activities more available’

Tandem calls on the federal government to –

Adopt the recommendations of the NDIS Review in full, including all Actions within

Recommendation7:IntroduceanewapproachtoNDISsupportsforpsychosocialdisability,focused

onpersonalrecovery,anddevelopmentalhealthreformstobettersupportpeoplewithsevere mentalillness.

Address barriers to service engagement in regional and rural areas such as transport and technology by providing adequate price caps as well as funding within NDIS packages, to minimise inequities in access.
Ensure Navigators who undertake proactive outreach to people with psychosocial disability have sufficient competencies and resourcing to build trust and relationships, particularly given many have had harmful experiences with the mental health system and/or NDIS. It is also important that Navigators have appropriate competencies in identifying young mental health carers.
Introduce specific mechanisms to promote family-inclusive practice within assessment, planning and review processes, such as ensuring that Carer Impact Statements are considered. Incorporate family inclusive practice within staff training, and culture and capability plans, at the NDIA and National Disability Supports Commission.
Include family-inclusive practice as a domain within the annual independent audit of the NDIA and National Disability Supports Commission, and enable family, carers and supporters in addition to NDIS participants to provide satisfaction scores on engagement with the NDIA.

57 Ibid., p. 32

Foundational supports as co-produced, block funded and responsive

It is vital that all people with psychosocial disability who are not NDIS participants have access to skilled support to progress recovery, and that their families, carers and supporters are also appropriately supported. Tandem welcomes the NDIS Review’s acknowledgement that a major expansion of foundational supports is required. The recent agreement by federal and state governments to share the costs of foundational supports is encouraging, however Tandem is concerned about the possibility that funding could be insufficient to meet demand, particularly into the future. Many people with psychosocial disability who in future might receive foundational rather than NDIS provision may require long-term support that is highly responsive to fluctuating need, can be intensive if and when needed, and involve assertive outreach, advocacy, and close collaboration with other service providers. Commissioners of foundational supports must also acknowledge their responsibility to resource the psychosocial supports workforce to have viable workloads and appropriate training and support, to avoid burnout and high staff turnover. Funding models that are conducive to these kinds of capacities are therefore essential.

Tandem recommends that the federal government works with the states and territories to;

Secure a joint, public commitment to adequate funding for foundational supports, and provide the proposed independent Disability Outcomes Council with the powers and resourcing necessary to promote government accountability for investment. This should include funding that is sufficient to address barriers to service engagement in regional and rural areas, such as transport and technology, and enable workers to have reasonable caseloads and time for ongoing training, supervision and engagement in communities of practice.
Block fund foundational supports for psychosocial disability, to ensure that provision is not time-limited and has capacity for intensive, flexible and assertive support including advocacy, support coordination, and close collaboration with other services.
Ensure that people transitioning from the NDIS to foundational and mainstream services receive appropriate support with this process and are not left without service provision either in the interim or ongoing.
Build foundational supports from not-for-profit health and social services, particularly those with strong connections to local communities, including Aboriginal health organisations and those for and by various culturally and linguistically diverse communities. Avoid foundational supports becoming an additional siloed system that exacerbates current fragmentation.
Co-produce foundational supports, whereby people with disabilities and their families, carers and supporters meaningfully participate, including in decision-making, throughout the commissioning cycle – including in design, implementation, evaluation and governance.

It is imperative that psychosocial disability support workers have an appropriate level of knowledge and skill regarding supporting people with alcohol and other drug challenges. Particularly for people with the most complex support needs, rates of co-occurring mental health and substance use challenges are such that effective support requires approaches that understand and respond to both in an integrated manner.58

58 State of Victoria. (2021). Chapter 22: Integrated approach to treatment, carer and support for people living with mental illness and substance use or addiction, in RoyalCommissionintoVictoria’sMentalHealthSystem,FinalReport,Volume3: Promotinginclusionandaddressinginequities, Parl Paper No. 202, Session 2018–21 (document 4 of 6)., https://finalreport.rcvmhs.vic.gov.au/

Tandem therefore recommends that the federal government works with the states and territories to;

Include a strong focus on: relational recovery; family-inclusive practice; competencies regarding supporting people with substance use challenges; and the effects of disadvantage and discrimination upon mental health, within psychosocial Practice Standards for both NDIS and foundational support providers. Training should include First Nations, LGBTIQA+ and culturally and linguistically diverse understandings of mental health as well as culturally appropriate kinship and family inclusive practice. Ongoing professional development, supervision and engagement in communities of practice should also be requirements within the Practice Standards.
Require and resource both NDIS and foundational support providers to respond to natural disasters and extreme weather events, such as undertaking welfare checks and outreach. Ensure that the development of protocols, and how protocols are actioned if necessary, is regularly audited, and that the National Disability Supports Commission monitors compliance.

It is important to note that family, carers and supporters of people with psychosocial disability experience challenges that are often different to those related to supporting someone with other disabilities, such as mental health crises (and accompanying hypervigilance) and stigma. Tandem therefore strongly recommends that in implementing disability reform, the federal government;

Include a range of adequate, tailored supports to families, carers and supporters of people with psychosocial disabilities, including but not limited to service navigation, advocacy, respite, brokerage, and support to re-engage or maintain activities outside the carer role.

Tandem also wishes to emphasise the vital importance of grassroots peer support networks for people with psychosocial disability and their families, carers and supporters. Not only do they build mutual support and social connectedness, ‘the presence of flourishing peer-to-peer and personal support networks, in addition to professional networks and services, contributes to a diverse and responsive service eco-system and helps amplify the voice of those whose needs are often overlooked or inadequately catered to by conventional service offers.’59 Particularly in regional and rural areas, these networks are often essential to the health and wellbeing of people who experience exclusion and isolation due to mental health stigma. Tandem therefore recommends that the federal government works with the states and territories to;

Resource peer support and peer-led advocacy groups on an ongoing basis to promote their reach and sustainability, whilst safeguarding their independence and therefore capacity for individual and systemic advocacy. Investigate and address gaps in peer support and peer-led advocacy groups in rural areas.

Exploring commissioning models for disability support that build social capital and community

The upcoming disability reforms present an exciting opportunity to explore models of commissioning that foster collaborative, community-led approaches to disability support and build community connections in regional and rural areas.

The NDIS Review acknowledges that ‘thin markets have been, and will continue to be, a persistent feature of the disability support sector. In the absence of government intervention there will be

59 Brotherhood of St Laurence. 2017. Reformstohumanservices:ResponsetotheProductivityCommission, The mission of the

community service sector in a time of change | Brotherhood of St. Laurence (bsl.org.au), p. 26

greater shortages, less competition, and ultimately poorer outcomes for participants’.60 It therefore proposes that the NDIA becomes more adept at identifying thin markets, and governments ‘become more active and flexible to help ensure markets work for everyone’ (p. 179-180). This aligns with the call within Tandem survey responses for ‘engagement from NDIS to build up services to ensure that the scheme is working effectively’, and the Loddon Mallee Mental Health Carers Network’s suggestion that multiple participants in the same area who share a service provider could also share travelling expenses, to assist in returning services to rural areas.61

The NDIS Review recommends that the NDIA should establish: provider panels and ‘ensure panels are lowering the cost of service delivery through greater coordination of travel and sharing costs and resources among providers’; matching tools that ‘help participants who have similar needs connect with each other and with providers to get the supports they collectively need’; and a provider of last resort policy, as well as encourage small, local organisations to form consortia to provide Navigation.62 These ideas are welcome, however, are unlikely to, in themselves, make a significant contribution towards reducing exclusion and isolation in regional and rural areas.

An approach more conducive to fostering social inclusion is that recommended by the NDIS Review, of community-led and place-based alternative commissioning for participants in First Nations communities, as well as all participants in remote communities. The NDIS Review explains that alternative commissioning models can enable local communities to design their own services in partnership with government to improve access, culturally safe provision and links to other types of services, in a ‘whole-of-community’ approach that builds on the community’s strengths. The NDIS Review emphasised the importance of governments sharing power with First Nations communities, including genuine partnership with local Aboriginal Community-Controlled Organisations (ACCOs), throughout commissioning.63

The substantial benefits of community-led commissioning need not be limited to First Nations and remote communities. Tandem survey data that thin markets for psychosocial disability supports extend beyond rural areas, and that regional centres can be affected. Moreover, as the Brotherhood of St Laurence explains, ‘wherever human needs are complex and multi-faceted and positive outcomes require the expertise of multiple providers, a system based on competition is likely to be counterproductive’.64 A marketised model is particularly ill-suited to the types of disadvantage and discrimination that can be exacerbated in regional and rural areas, as Tandem’s survey data further illustrates.

There is growing impetus for co-produced commissioning that strengthens smaller organisations that understand and are embedded in local communities, and can ‘adapt services to local conditions or harness community effort’65 due to the depth and reach of their networks. Such models can be more cost-efficient as well as effective.66 Importantly, they can engender more meaningful agency for service participants in relation to their provision than conventional ‘choice and control’; lived

60 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 46

61 Loddon Mallee Mental Health Carers Network. SubmissiontoMentalHealthProductivityCommission, Submission 52 -

Loddon Mallee Mental Health Carers Network (LMMHCN) - Mental Health - Public inquiry (pc.gov.au) 62 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 183-185

63 Ibid. 64 Brotherhood of St Laurence. 2017. Reformstohumanservices:ResponsetotheProductivityCommission, The mission of the

community service sector in a time of change | Brotherhood of St. Laurence (bsl.org.au), p. 9

65 Ibid., p. 10 66 Australia Cares - Sydney Policy Lab; Goodwin, S., Stears, M., Riboldi, M., Fishwick, E., Fennis, L. (2020). ‘Alltogether:Anew futureforcommissioninghumanservicesinNewSouthWales’. Sydney Policy Lab, University of Sydney, All together a new future for commissioning human services in NSW - The University of Sydney; Brotherhood of St Laurence. 2017. Reformsto

humanservices:ResponsetotheProductivityCommission, The mission of the community service sector in a time of change |

Brotherhood of St. Laurence (bsl.org.au)

experience representation throughout the commissioning process, including from peer-led organisations, can create genuinely responsive and accountable provision.67 Participants can also benefit from greater opportunities for peer support and to develop social and community connections – thereby also developing ‘natural safeguards’68 – and from integrated service provision. This approach is also conducive to services and people with lived experience participating in initiatives to address disadvantage and discrimination, such as grassroots projects that tackle stigma. Tandem recommends that the federal government work with the state and territory governments to;

Explore community-led commissioning approaches for psychosocial supports in rural and regional areas, for NDIS participants as well as foundational supports, to promote responsive, coordinated and accountable service provision that fosters social inclusion.

Robust co-design, monitoring and active stewardship in partnership with people with lived experience

Achieving equitable access to safe and effective disability supports will require proactive governance, including market stewardship and independent oversight, in genuine partnership with people with disability and their families, carers and supporters. Clear mechanisms must be developed to ensure that the sector, including the reform process itself, is lived experience-led and publicly accountable.

Insufficient visibility of and consequences for poor provider performance and conduct,69 in conjunction with perverse incentives, has created service provision that is not only often poor quality but also exploitative and abusive. Tandem endorses the NDIS Review’s emphasis upon the crucial importance of robust stewardship of the NDIS, of proportionate and proactive regulatory oversight of the disability sector as a whole, and that these ‘processes need to be transparent, valid and based on lived experiences so they can be trusted’.70 Tandem welcomes the NDIS Review’s recommendation for a new National Disability Supports Commission that has sufficient powers and resourcing for: clear oversight of all providers; a proactive focus on quality, and safeguards against exploitation and abuse; robust monitoring that directly reflects the experiences of people with disability; assertive responses to quality and safety failings; and public reporting of provider performance against quality and safety metrics.71

As the NDIS Review noted, existing consultation mechanisms do not enable people with lived experience to have real influence in decision-making about policy, planning and implementation. Furthermore, people experiencing certain types of disability, including psychosocial disability, are further under-represented in these processes.72 The NDIS Review explained that much greater detail needs to be developed from its ‘reform blueprint’ , and it is ‘vitally important that implementation is done by all governments working together in partnership with people with disability, their families and carers.’73 Various new bodies it proposes present an exciting opportunity to embed under

67 Brotherhood of St Laurence. 2017. Reformstohumanservices:ResponsetotheProductivityCommission, The mission of the

community service sector in a time of change | Brotherhood of St. Laurence (bsl.org.au)

68 Bonyhady, B. & Paul, L (2023). WhatWeHaveHeard–Movingfromdefiningproblemstodesigningsolutionstobuildabetter NDIS, What we have heard report (ndisreview.gov.au), p. 24 69 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 240

70 Ibid., p. 41 71 Ibid. 72 Ibid., p. 241 73 Ibid., p. i

represented voices throughout system governance, including full commissioning cycles wherever applicable. The proposed Disability Advisory Council – which ‘should ensure people with disability are included in all aspects of planning, design, monitoring and evaluation of disability support’, and that will report on ‘disability community perspectives on the performance of governments’ – is imperative.74 Tandem recommends that the federal government work with the states and territories to;

Embed genuinely diverse representation – including of people with psychosocial disabilities, families, carers and supporters, and geographic regions – within lived experience leadership of the:

NDIA;
new National Disability Supports Commission;
new Disability Advisory Council;
new Disability Outcomes Council;
new NDIS Review Implementation Advisory Committee; and
current and planned psychosocial steering committees and working groups, including to design the interface between psychosocial disability supports and the broader mental health system.

Ensure that the following initiatives are co-produced with people representing diverse disabilities, families, carers and supporters, and geographic regions;

development of the Disability Supports Quality and Safeguarding Framework;
design, testing and implementation of reforms to the NDIS participant pathway;
development of the Foundational Support Strategy;
the full commissioning cycles of foundational supports (including service design);
development of the Disability Support Outcomes Framework;
design of general and specialised navigator and support worker practice frameworks; and
provider Practice Standards.

Include mental health consumer and carer peaks within advisory bodies and relevant working groups throughout the reform process, to promote the breadth and depth of representation of, and accountability to, people with lived and living experience.
Ensure that the National Disability Supports Commission is independent, sufficiently resourced for assertive regulation, can initiate its own inquiries, and also actively considers the particular challenges within regional and rural areas.
Ensure that family, carers and supporters can also raise concerns and make complaints to the new National Disability Supports Commission.

Tandem supports a rigorous monitoring and evaluation approach with a strong focus on outcomes and intersectional indicators, and that also makes visible discrepancies between rural, regional and urban areas. Tandem recommends that the federal government work with the states and territories to;

Co-design outcome measurement frameworks and quality and safety metrics (including with 74 Ibid., p. 245

people with psychosocial disability and family, carers and supporters), and which make visible various barriers to recovery posed by systemic and structural disadvantage.

Ensure that regular cycles of monitoring and evaluation of disability supports: also includes data about the experiences of families, carers and supporters; disaggregates data by region to illustrate geographic discrepancies; and produces publicly available reports.
Undertake gaps analyses of the various kinds of disability supports and track the progress of initiatives to address workforce shortages. This work should disaggregate data by region to illustrate geographic discrepancies and produce publicly available reports.
Measure how disability supports affect families, carers and supporters in relation to: their own health and wellbeing; returning to or maintaining paid employment; and community engagement more broadly.

Tandem strongly supports the NDIS Review’s recommendations to urgently reduce and eliminate restrictive practices, through addressing the causes of these practices as well as stronger compliance action.75 More specifically, Tandem recommends that the federal government work with the states and territories to;

Immediately develop a specific strategy, as part of broader workforce growth initiatives, to address the shortage of behaviour support plan practitioners in regional and rural areas, and capture data (disaggregated by geographic region) on access to behaviour support plan practitioners on an ongoing basis.
Ensure that the National Disability Supports Commission, as part of its broader work to reduce restraint, develops a specific strategy to proactively identify, investigate and also prevent instances of the chemical restraint of people with psychosocial disability.
Require the National Disability Supports Commission to publicly report, within regular specified timeframes, data (disaggregated by geographic region) on the rates of notifications of chemical restraint of people with psychosocial disability and, in each case, whether a behaviour support plan had been developed and followed, whether staff involved were appropriately trained, and the Commission’s response.

Addressing systemic and structural disadvantage, and discrimination

Particularly in rural and regional areas, quality psychosocial disability and other services are necessary, however, are insufficient to facilitate recovery for many; action to address disadvantage and discrimination is an essential precondition. Achieving social inclusion for people with disability requires changes within society beyond service provision, as the NDIS Review acknowledges.76 Therefore, in addition to an imperative for mainstream services and systems to become more inclusive,77 it is vital that broader challenges such as structural drivers of poverty and mental health stigma are proactively addressed.

Housing and income security

Participants within Loddon Mallee Mental Health Carers Network (LMMHCN) and La Trobe

75 Ibid., p. 218-226 76 Ibid., p. 33 77 Ibid., p. 31

University’s housing study, as well as within Tandem surveys and consultations, have strongly emphasised the need for urgent action to address both the lack of appropriate supported housing and affordable ‘mainstream’ rentals. Tandem welcomes the NDIS Review’s acknowledgement of the severe housing crisis,78 that ‘Secure and affordable housing is foundational to the lives of all Australians’,79 and that ‘Achieving better housing and living outcomes is critical to the [NDIS] scheme delivering greater inclusion for people with disability and connection to family, friends and community’.80

Tandem survey respondents explained the need for a variety of models with different combinations of housing and support that range from intensive to largely independent. While this aligns with the NDIS Review’s findings, the final report’s primary focus here was upon housing and living supports for those who require 24/7 support. Although the recommendation for more specialist disability accommodation (SDA) in locations where participants can sustain connections to family and other informal supports81 is welcome, a strong focus is also needed upon non-SDA models tailored to psychosocial disability. This may, for example, include assistance with sustaining a mainstream tenancy or other living tasks, the intensity of which likely fluctuates over time. Research has demonstrated that if ‘government were to spend $0.5 billion on integrated housing and support solutions for young people with mental illness, this would generate approximately $1.5 billion in savings in the short term and $4.8 billion in the longer term’, due to lower engagement in the healthcare and criminal justice systems, and higher employment.82 The scale of these figures indicate the profound benefits secure housing with adequate support has upon mental health as well as demonstrating that, for governments, such models are an investment rather than a cost.

Further, although increased ‘supports to find and maintain housing’ are important – as acknowledged by the NDIS Review83 - if undertaken in the absence of sufficient social housing stock it would be largely ineffective. The recent InquiryintohomelessnessinVictoriaby the Legislative Council’s Legal and Social Issues Committee heard that the efficacy of housing and homelessness support programs is severely curtailed by the extent of the social housing shortfall.84 Private rental is not viable for those who must rely entirely upon social security. Anglicare Australia’s 2023 Rental Affordability Snapshot found that .1% of rentals were affordable for people receiving the Disability Support Pension, and none were affordable for those on JobSeeker.85 Social housing can both protect against homelessness occurring and end episodes of homelessness. As the Inquiryintohomelessnessin Victoriastated, the protective nature of social housing is particularly salient for people experiencing complex needs due to rent being a proportion of income and greater security of tenure than in the private market.86

Although some progress to increase social housing stock is currently being made in Victoria via the ‘Big Housing Build’, it will fall well short of meeting demand.87 Addressing the current and projected

78 Ibid., p. 44 79 Ibid., p. 150 80 Bonyhady, B. & Paul, L (2023). WhatWeHaveHeard–Movingfromdefiningproblemstodesigningsolutionstobuildabetter NDIS, What we have heard report (ndisreview.gov.au), p. 22 81 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 150

82 State of Victoria. (2021). RoyalCommissionintoVictoria’sMentalHealthSystem,FinalReport,Volume2:Collaborationto supportgoodmentalhealthandwellbeing, Parl Paper No. 202, Session 2018–21 (document 3 of 6). Accessed from https://finalreport.rcvmhs.vic.gov.au/, p. 405-406 83 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 135

84 Legislative Council Legal and Social Issues Committee, Victorian Parliament. (2021). InquiryintohomelessnessinVictoria:

Finalreport. Reports (parliament.vic.gov.au)

85 Australian Council of Social Service (ACOSS). September 2023. SubmissiontoInquiryintotheworseningrentalcrisisin

Australia, Submission-to-Inquiry-on-rental-crisis-September-2023.pdf (acoss.org.au)

86 Parliament of Victoria, Legislative Council, Legal and Social Issues Committee, InquiryintohomelessnessinVictora:Final report, inquiry-into-homelessness-in-victoria—final-report.pdf (parliament.vic.gov.au), p. 168 87 Ibid., p. 287

shortfall also requires a re-configuration of priorities within federal spending on housing. Existing settings are such that ‘[i]n 2023-2024, federal investor tax breaks will be worth more than ten times the amount spent by the Federal Government on social housing and homelessness services through

the National Housing and Homelessness Agreement’.88

As the NDIS Review acknowledges, the majority of NDIS participants require access to affordable mainstream housing, for which all governments have a responsibility.89 Tandem strongly endorses their recommendation for Australian Governments to ensure that housing and disability reform is integrated, whereby a targeted action plan for housing is published under Australia’s Disability Strategy, which is linked to the forthcoming National Housing and Homelessness Plan (NHHP).90 Tandem also strongly supports the Australian Council of Social Services (ACOSS)’s recommendations for the forthcoming NHHP, including for ambitious and clear targets with specific timeframes to be set, particularly to increase social housing stock to fully meet demand.91

Tandem therefore recommends that the federal government;

Acknowledge, within both disability and housing reform, that appropriate and secure housing is essential to positive outcomes for people with disability – and therefore also the efficacy of disability supports.
Adopt ACOSS’ recommendation for investment in social housing sufficient to meet demand over the long term, to enable people with psychosocial disability to have the housing security upon which recovery depends. Ensure that an appropriate proportion of stock is allocated to people with psychosocial disability and built within rural towns to avoid people having to move away from family and other local connections.
Ensure sufficient resources and training within NDIS and foundational psychosocial supports for tenancy sustainment support and housing advocacy. Work with the states and territories to also improve training and protocols for social housing providers, including to promote collaboration with psychosocial disability and mental health service practitioners.
Identify an appropriate range of tailored, supported housing models for people with psychosocial disability, undertake a gaps analysis of such, and increase provision accordingly. Ensure close integration with any similar state and territory initiatives, as well as strong engagement with stakeholders such as the mental health sector and lived experience representation.
Include a focus on the quality and safety of supported residential services (SRSs) in the forthcoming National Housing and Homelessness Plan, and encourage state and territory governments to adopt in full the Royal Commission into Violence, Abuse, Neglect and Exploitation of

People with Disability’s Recommendation7.38:Minimumservicestandardsandmonitoringand

oversightofsupportedresidentialservicesandtheirequivalents.

Include affordable and appropriate housing for people with disability – including social housing – in a targeted action plan for housing under Australia’s Disability Strategy, as well as within the remit of the Disability Outcomes Council, to promote government accountability.

88 Centre for Equitable Housing, Per Capita, (2024). OnWhoseAccount?GovernmentSpendingonHousing, On Whose

Account? Government Spending on Housing - Per Capita, p. 6 89 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 150

90 Ibid., p. 155 91 Australian Council of Social Service (ACOSS). October 2023. DevelopingtheNationalHousingandHomelessnessPlan. Final-submission-to-National-Housing-and-Homelessness-Plan-20.10.2023.pdf (acoss.org.au)

Tandem endorses the call by the Australian Council of Social Services (ACOSS) to raise income support to a level that enables essential living costs to be met,92 and recommends that the federal government;

Action ACOSS’ recommendations on lifting income support, to prevent mental health deterioration and enable recovery for people with psychosocial disability, and families, carers and supporters who are in receipt of Centrelink payments.

Tandem supports the NDIS Review’s recommendation for Disability Impact Assessments to be incorporated within new policy proposal assessment processes by all Australian governments. Importantly, the NDIS Review noted that new polices should align with the new Disability Rights Act recommended by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.93 Tandem also suggests that the federal government works with the states and territories to;

Include consideration of a diversity of disabilities as well as regional, rural and remote contexts within Disability Impact Assessments of proposed transport, social security and other relevant policies.

Tandem agrees with the NDIS Review that the establishment of a National Disability Data Asset, which will link NDIS data with social security, health, housing, employment and other forms of data, is a significant opportunity ‘to examine the impact of a very broad range of policies’. However, funding for the NDDA has only been guaranteed for two years. Funding for academic and other research projects to improve the disability sector is also currently insufficient, however the NDIS Review welcomed the establishment of a new National Disability Research Partnership (NDRP) and suggested that, while small, it has ‘significant potential to grow’. It is encouraging that the NDRP is to involve people with disability and their families, carers and supporters.94 Tandem recommends that the federal government;

Extends the funding for the National Disability Data Asset (NDDA), to increase visibility of relationships between social determinants of health and outcomes for people with disability, including discrepancies between metro and regional and rural areas.
Expands the National Disability Research Partnership (NDRP) and ensure that setting research agendas and undertaking research projects is genuinely co-produced with people with a diverse range of disabilities as well as families, carers and supporters, and includes those from regional and rural areas.

Stigma reduction

Consultation on a draft National Stigma and Discrimination Reduction Strategy concluded in February 2023, however a finalised Strategy does not appear to have been released.95 Tandem recommends that the federal government;

Release the National Stigma and Discrimination Reduction Strategy as a matter of priority. Ensure that this Strategy is well-coordinated with Australia’s Disability Strategy 2021-2013 and has a strong focus on regional and rural areas, including that grassroots community initiatives to tackle stigma in

92 Lifting income support so everyone can cover the basics - ACOSS 93 Bonyhady, B. & Paul, L (2023). IndependentReviewintotheNationalDisabilityInsuranceScheme:Finalreport. Working

together to deliver the NDIS | NDIS Review, p. 75

94 Ibid., p. 262-263 95 Australian Government, National Mental Health Commission, National Stigma and Discrimination Reduction Strategy

National Mental Health Commission

regional and rural areas are supported.

Tandem March

Tandem Inc., Wurundjeri Country

Authorised by: Sarah

Irving

Advocacy

tandem Sarah Irving, Acting Director Policy and Advocacy

About Tandem

Acknowledgement of Country

Acknowledgements

Table of Contents

Recommendation7:IntroduceanewapproachtoNDISsupportsforpsychosocialdisability,focused

People with Disability’s Recommendation7.38:Minimumservicestandardsandmonitoringand

Introduction

Access

Planning

Review

Victoria

Australia.28

RoyalCommissionintoVictoria’sMentalHealthSystem,FinalReport,Volume3:Promotinginclusionandaddressinginequities,

39 Loddon Mallee Mental Health Carers Network. SubmissiontoMentalHealthProductivityCommission, Submission 52 -

49 Loddon Mallee Mental Health Carers Network. SubmissiontoMentalHealthProductivityCommission, Submission 52 -

51 Loddon Mallee Mental Health Carers Network. SubmissiontoMentalHealthProductivityCommission, Submission 52 -

Recommendation7:IntroduceanewapproachtoNDISsupportsforpsychosocialdisability,focused

61 Loddon Mallee Mental Health Carers Network. SubmissiontoMentalHealthProductivityCommission, Submission 52 -

Participants within Loddon Mallee Mental Health Carers Network (LMMHCN) and La Trobe

Finalreport. Reports (parliament.vic.gov.au)

Australia, Submission-to-Inquiry-on-rental-crisis-September-2023.pdf (acoss.org.au)

the National Housing and Homelessness Agreement’.88

People with Disability’s Recommendation7.38:Minimumservicestandardsandmonitoringand

88 Centre for Equitable Housing, Per Capita, (2024). OnWhoseAccount?GovernmentSpendingonHousing, On Whose

National Mental Health Commission