NDIA Accountability Project

Supplementary submission regarding mental health carer support needs

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Towards voice and control: supplementary submission to the inquiry into the NDIS participant experience in rural, regional and remote Australia

Tandem July 2024

Tandem Inc., Wurundjeri Country

70 Trenerry Crescent, Abbotsford 3067 Telephone: 03 8803 5555

Authorised by: Marie Piu

Position in organisation: CEO

About Tandem

Tandem is 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 challenges.

  • ensures state and federal governments recognise the role, contribution and needs of the carers of people with mental health challenges.

  • 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 challenges 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. Page | 3

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.

Contents

Summary ………………………………………………………………………………………………………………………………. 5 RecommendaƟons ……………………………………………………………………………………………………………………………. 6 An overreliance on ‘choice’ can in effect undermine control ……………………………………………………….. 6 Psychosocial disability workforce condiƟons are of significant concern ………………………………………… 8 A number of challenges to quality provision are inherent within a social service market ………………… 8 Reliance upon empowered consumers ………………………………………………………………………………………………… 8 Structure of the individualised funding model ……………………………………………………………………………………… 9 Perverse incenƟves …………………………………………………………………………………………………………………………… 9 Robust regulaƟon is necessary to avoid harm to parƟcipants, their family, carers and supporters, and the psychosocial disability workforce ……………………………………………………………………………………………. 10 Empowering provision requires horizontal approaches to promoƟng quality, transparency and accountability ………………………………………………………………………………………………………………………………………….. 10 Independent advocacy services ………………………………………………………………………………………………………… 12 Community-led commissioning ………………………………………………………………………………………………………… 13 DeliberaƟve networks of providers, open disseminaƟon of outcomes, and co-produced research ……………. 14

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Summary

Tandem welcomes the opportunity to provide a supplementary submission to the inquiry into the NDIS participant experience in rural, regional and remote Australia by the Joint Standing Committee on the NDIS, following Tandem’s appearance at the public hearing in June 2024 and initial submission.1 We wish to contribute further to the discussion about choice and control, and mechanisms to promote service quality as well as an adequately supported workforce.

Tandem’s position is informed heavily by the experiences, insights and ideas of family, carers and supporters of people who experience mental health challenges, many of whom also work in the mental health and psychosocial disability sectors. In the 2023-2024 financial year, Tandem’s Support and Referral Line responded to 3,654 phone calls regarding the NDIS - 58% of the total call volume. Tandem’s position is also informed by data from 105 responses from regional and rural Victorians to Tandem surveys in 2023 and 2024 regarding the NDIS,2 as well as insights from other forms of member consultation.

The central contention of this supplementary submission is that choice within the NDIS is an important principle, yet in practice often entails little to no control due to other vital principles, such as individual and collective voice, being insufficiently promoted. Robust regulation is necessary to avoid harm to participants, their family, carers and supporters, and the psychosocial disability workforce. However, ‘top down’ regulation alone is inadequate; ‘horizontal’ approaches that promote transparency and accountability are also required, and can avoid an over-reliance on top down mechanisms. Relevant horizontal approaches can include: formal independent advocacy services; alternative commissioning (involving local co-production of service design, governance, monitoring and evaluation); grassroots peer support and advocacy networks; deliberative networks of providers, open dissemination of outcomes, and co-produced research. These different methods complement and strengthen the efficacy of one another.

Horizontal approaches promote ‘voice and control’; they create conditions and incentives beyond that offered by conventional market stewardship to stimulate quality, empowering service provision. The benefits of these approaches are well evidenced. A balance between top down and horizontal approaches means that regulation need not undermine participants having meaningful control; indeed, this balance can promote meaningful control. It can also address the NDIS’ over-emphasis on an individualistic approach, towards one that enables participants to develop or strengthen relationships with family and others, and belonging within the community. Such benefits are particularly vital for cohorts and localities that experience strong disadvantage and discrimination, such as people with psychosocial disability in regional, rural and remote areas and their family, carers and supporters.

1 Tandem’s iniƟal submission, ‘Experiences of supporƟng people to access, or who are accessing, the NDIS for psychosocial disability in regional and rural Victoria’ can be found at Submissions and responses (tandemcarers.org.au) 2 Survey responses include those from an online survey to inform this submission was run in early 2024, for people 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.

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Recommendations

Building on the recommendations in Tandem’s initial submission, we further suggest that the federal government:

  1. Take greater responsibility for the wages and conditions of the disability workforce, including mechanisms to ensure workers have ready support from senior staff.

  2. Ensure that Local Area Coordinators and support coordinators are independent from support providers, taking active regulatory measures to mitigate against conflicts of interest.

  3. Facilitate the establishment of deliberative provider networks, such as communities of practice, including for Local Area Coordinators and support coordinators, and the open dissemination of service outcomes between providers.

An overreliance on ‘choice’ can in effect undermine control In their campaign for system transformation that led to the NDIS, the primary aim of disability activists was equity of access to quality support regardless of geographical location, and for people to have control in relation to their service provision. Early in the reforms, choice was posited as the most effective means to achieve this end, rather than being an end in itself.3 However, choice in and of itself has disproportionately become an imperative. The NDIS’ development has relied too heavily upon the assumption that competition between providers motivated by the risk of participant exit will stimulate supply of personalised, effective, efficient and equitable provision.4

Choice often remains a theoretical principle for NDIS participants with psychosocial disability; it has largely failed to promote quality provision and control. As Tandem’s initial submission detailed, our consultation findings echo those of research and the NDIS Review which demonstrate a significant shortfall of skilled, recovery-orientated, and culturally appropriate support. The NDIS Review explained 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’.5 Tandem survey respondents explained that: ‘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… 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’

Indeed, not only can a lack of specialised support forestall recovery, it can also directly harm the mental health of participants; ‘Untrained people doing specialised work with no idea of the individual clients needs often causing more distress’

3 Considine, M. (2022). The Careless State: Reforming Australia’s Social Services, Melbourne University Publishing, p. 117 4 Carey, G, Dickinson, H, Malbon, E & Reeders, D. 2017. ‘The vexed question of market stewardship in the public sector: examining equity and the social contract through the Australian National Disability Insurance Scheme’, Social Policy and Administration. https://doi.org/10.1111/spol.12321, p. 2-4 5 Bonyhady, B. & Paul, L (2023). Independent Review into the National Disability Insurance Scheme: Final report. Working together to deliver

the NDIS | NDIS Review, p. 28

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The NDIS Review reported that this specialised support deficit, including of behaviour support plan practitioners, contributes to the wide and growing use of restrictive practices.6 This concern has been echoed in Tandem member consultation: ‘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’

Moreover, the failure of NDIS psychosocial disability support to collaborate with health and social services to deliver coordinated service responses jeopardises the safety and health of participants. For example, the NDIS Review noted that the lack of an integrated complex care approach between the NDIS and the public mental health system contributes to unnecessarily long hospital admissions and other poor outcomes.7

The inclusion of recovery principles within Australian legislation and policy was hard-won through the advocacy of those with lived experience.8 Not only does the corrosion of recovery-orientated provision entail a shift ‘in the opposite direction from policy and practice trends that have been established nationally, and internationally, to provide effective support as well as longer-term financial benefit’,9 but undermines that which consumers have identified as empowering.

Further, as the NDIS rollout led to not-for-profit disability organisations having to compete rather than work together, their ability to continue being ‘an independent voice for the disadvantaged’ has been stymied. As Professor Mark Considine, an international leader in social service reform scholarship, explains; ‘competitive financial incentives often drive a sector-wide shift in values. We then observe NGOs being either driven out, or reshaped in the image of their private competitors in a process of mission drift.’10 Advocacy support to individuals can also be undermined due to wariness about supporting potential participants constituting possible commercial conflict of interest.11

Access to quality, recovery-focused support has also been greatly limited by the deprofessionalisation of the psychosocial disability workforce. The skilled community mental health workforce, including those within valuable peer support programs, largely dissipated with the NDIS roll out and corresponding lack of training requirements.12 The NDIS Review subsequently found that ‘large and persistent workforce shortages remain in the NDIS under current policy settings’, and that ‘[e]ach year, indicatively between 17 per cent and 25 per cent of NDIS workers leave their job’.13 Further, as the NDIS Review recognised, peer workers have a ‘critical role’ yet are under-represented within the workforce.14 Tandem consultation participants have expressed concern about how high turnover can be destabilising for participants and impede recovery, as building the trust and strong working relationship crucial to recovery coaching takes time.

6 Ibid., p. 218-222 7 Ibid., p.67 8 Department of Health, The State Government of Victoria. (2011). Framework for recovery-oriented practice. Retrieved from https://www2.health.vic.gov.au/mental-health/practice-and-service-quality/service-quality/recovery-oriented-practice-in-mental-health 9 Hancock, N, Bresnan, A, Smith-Merry, J, Gilroy, J, Yen, I, & Llewellyn, G 2018, Mind the Gap: NDIS and Psychosocial disability – the Victorian Story: Insights and Policy Recommendations from Expert Stakeholders. Report prepared for Psychiatric Disability Services of Victoria and SalvoConnect, p.25 10 Considine, M. (2022). The Careless State: Reforming Australia’s Social Services, Melbourne University Publishing, p. 188 11 Hancock, N, Bresnan, A, Smith-Merry, J, Gilroy, J, Yen, I, & Llewellyn, G 2018, Mind the Gap: NDIS and Psychosocial disability – the Victorian Story: Insights and Policy Recommendations from Expert Stakeholders. Report prepared for Psychiatric Disability Services of Victoria and SalvoConnect, p.18 12 Ibid., p. 24 13 Bonyhady, B. & Paul, L (2023). Independent Review into the NaƟonal Disability Insurance Scheme: Final report. Working together to deliver the

NDIS | NDIS Review, p. 193

14 Ibid., p. 194-196

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Psychosocial disability workforce conditions are of significant concern Tandem wishes to highlight that the wellbeing and safety of the psychosocial disability workforce is a vital consideration in and of itself. The NDIS Review found that much of the disability workforce contends with the precarity of casualisation, poor conditions, lack of access to training and high levels of burn out.15 The lack of training requirements places downward pressure on wages; ‘[b]etter qualified staff are… at constant risk of being undercut’.16 High rates of staff turnover ‘places pressure on existing workers, particularly in regional and remote areas.’17

Adequate and ongoing training, supervision sessions and ready access to support from senior staff is imperative to the welfare of the psychosocial disability workforce. This extends beyond workers having a role they find meaningful, and confidence in their ability to be useful to participants. Lacking the necessary knowledge, skills, and supervision can lead to significant stress and moral injury. Workers responding to various kinds of mental health crisis without the knowledge and skill to do so effectively is unjust and harmful. For example, in situations involving suicidal ideation or intent it is imperative for the wellbeing of the worker as well as participant that the worker has received the appropriate training, and know when and where to seek further or urgent support.

A number of challenges to quality provision are inherent within a social service market Whilst severe in regional and rural areas, the deficit of skilled psychosocial support for NDIS participants extends across geographical locations. A tension is evident between the needs of many of those with psychosocial disability for highly flexible, responsive and assertive support, and the limits to support that are arguably inherent in a quasi-market system.

Reliance upon empowered consumers The efficacy of a social service market depends heavily upon peoples’ capacity and motivation to independently perform as informed and empowered consumers.18 People who experience barriers to strong self-advocacy are often prevented from exercising genuine choice and control; therefore, the most socially excluded are the least likely to access quality service provision.19 This inequity further compounds vulnerability and disadvantage.

Limited opportunity to exercise choice is not only a result of insufficient information about options; it also reflects many other challenges, such as lack of time and overwhelm due to complex, stressful situations that can entail also juggling (or attempting repeatedly to access) various services outside the NDIS. Furthermore, complex and relational service types require greater investigation into quality, and involve higher ‘negotiation costs to fit the proposed service to the specific needs of the client’ as well as higher exit costs.20 As the NDIS Review found, although the roles of Local Area Coordinators and support coordinators were designed to mitigate against these challenges, they have broadly been insufficient.

15 Ibid., p. 193 16 Considine, M. (2022). The Careless State: Reforming Australia’s Social Services, Melbourne University Publishing, p. 132 17 Bonyhady, B. & Paul, L (2023). Independent Review into the NaƟonal Disability Insurance Scheme: Final report. Working together to deliver the

NDIS | NDIS Review, p. 193

18 Hazelton, M & Clinton, M 2002, ‘Mental health consumers or citizens with mental health problems?’ in S Henderson and A R Peterson

(eds.), Consuming Health: The Commodification of Health Care, Routledge, London, p. 93

19 Carey, G, Dickinson, H, Malbon, E & Reeders, D. 2017. ‘The vexed question of market stewardship in the public sector: examining equity and the social contract through the Australian National Disability Insurance Scheme’, Social Policy and Administration. https://doi.org/10.1111/spol.12321, p. 14 20 Considine, M. (2022). The Careless State: Reforming Australia’s Social Services, Melbourne University Publishing, p. 135

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Structure of the individualised funding model Individual packages with specified time limits challenge the ability of psychosocial disability workers to respond to fluctuating and unpredictable need that may at times require intensive support. They are also not conducive to providing group-based services or support to families, carers and supporters21, and thus far have had an inadequate focus on relational recovery, family inclusive practice, and opportunities to build social capital. The structure of individual packages has also undermined ‘the more collective structures in the disability sector through which groups of participants and their families and friends build capacity and fashion services’.22 Further, it has been argued that the quality of the relationship with a psychosocial disability worker, which is often central to recovery, is undermined if support is constituted as a market-based ‘transaction’.23

Perverse incentives As Tandem’s initial submission outlined, 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; ‘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’

Survey respondents also reported experiences of providers overcharging, charging for services that were not delivered at all, and higher fees for NDIS participants than for those not on the scheme. Further, Tandem’s Support and Referral Line have received phone calls about instances of NDIS providers attempting to obtain guardianship of the participants they are providing services to, to enable the provider to make decisions about living arrangements and supports, and therefore where funds are spent.

Profit seeking as a motivator of provider behaviour, and the corresponding risk of conflict with the interests of participants, is of course inherent within a social service market. There is an intrinsic contradiction between retaining large package funds and supporting participants to experience greater independence, an intrinsic possibility that ‘providers cream only the most lucrative clients and generate a new set of costly obligations for government in their wake’, and ‘the ever-present risk of fraud in schemes which rely upon private providers of services negotiating directly with individual clients.’24 Further, providers ‘can choose to provide the best to some and much less to others, or they may not bother to innovate at all if profits are strong and price signals are weak’, and ‘particularly where these are for-profit, may be unwilling to risk providing services to meet the needs of small client populations if this involves costly investments’.25 There is also no incentive for a provider to refer participants to the other types of health and social services they may need, however, there is an incentive for it ‘to concentrate its efforts on those things that bring funds to its own service, not to another’.26

21 Ibid., p. 129 22 Ibid., p. 137 23 Shepard, G., Boardman, J., Rinaldi, M., & Roberts, G. (2014). Supporting recovery in mental health services: Quality and Outcomes. ImplemenƟng Recovery through OrganisaƟonal Change (ImROC), p. 6 24 Considine, M. (2022). The Careless State: Reforming Australia’s Social Services, Melbourne University Publishing, p. 132-134 25 Ibid., p. 133-139 26 Ibid., p. 201

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The profit imperative also discourages providers from providing workforce training. As Considine explains, social service markets have:

a strong bias against deepening the role of service expertise. Significant investments in human capital are rare. This in turn creates a scarcity in the supply of higher qualified staff, of well-trained frontline teams and of advanced skills in problem-solving for complex clients. These are systemic conditions… Any effort to significantly improve one’s own workforce quickly risks other firms simply hiring away one’s staff instead of investing in training their own. Or it lifts one’s own costs…27

Robust regulation is necessary to avoid harm to participants, their family, carers and supporters, and the psychosocial disability workforce The inherent potential within a public sector market for those with psychosocial disability to experience barriers to appropriate support requires active government intervention. As the NDIS Review has acknowledged, inadequate regulation has contributed to poor quality provision and ‘opened the door to exploitation and abuse’.28 This failure has compounded the social exclusion of an already disadvantaged population. It is unjust that the burden of responsibility and consequences for harmful provision in effect falls largely upon participants and their family, carers and supporters. Appropriate regulation need not undermine participant control, and is clearly necessary to avoid harm to participants and workers, as well as to family, carers and supporters. As mentioned in Tandem’s initial submission, Tandem strongly supports the NDIS Review’s various recommendations to strengthen market stewardship, including those regarding: proportionate registration requirements; a specific Practice Standard that includes workforce competencies and training for psychosocial providers; a strong National Disability Supports Commission, and public reporting. Tandem’s initial submission also emphasised the importance of lived experience participation within these oversight and governance mechanisms. Tandem further recommends that the federal government;

  1. Take greater responsibility for the wages and conditions of the disability workforce, including mechanisms to ensure workers have ready support from senior staff.

  2. Ensure that Local Area Coordinators and support coordinators are independent from support providers, taking active regulatory measures to mitigate against conflicts of interest.

Empowering provision requires horizontal approaches to promoting quality, transparency and accountability Proactive market stewardship, including top down regulation, is necessary yet insufficient to address a quasi market’s inherent challenges. As Considine explains,

For advocates of the choice approach, governments simply need to get better at shaping and adjusting these service markets and thus improving the choice menu… tighter procurement methods and even greater regulatory control… We can describe this as a top-down approach: Promote more aggressive competition between agents, use more regulation to stop fraud, put more effort into informing the

27 Ibid., p. 200 28 Bonyhady, B. & Paul, L (2023). Independent Review into the NaƟonal Disability Insurance Scheme: Final report. Working together to deliver the

NDIS | NDIS Review, p. 28

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consumers before they make fateful choices. But this has not worked until now and it has surely been given ample opportunity.29 Further, the assumption of lifting price caps for provision to particularly vulnerable participants, in order to improve their support, is flawed; providers ‘tend to find ways to take the money without giving much extra service’. This can entail an ongoing cycle of tightening regulations and subsequent efforts by some providers to circumvent them.30 The expectation that choice will stimulate quality leads to what Considine calls ‘black-box provision’ – whereby government does not have insight into and understanding of the services themselves, nor directly participates in creating quality service development. Black-box provision undermines the control of participants – those equipped to do so might choose and exit services, however participants do not have ‘any ongoing voice in the actual delivery of that service’.31 Considine explains that ‘horizontal’ mechanisms enabling stakeholders to meaningfully participate in service provision can promote control, through ‘shifting the weight of service design from choice to voice. While both are needed, the pendulum needs to swing back towards the real experiences of those inside the services… [which] requires an open system informed by ongoing and authoritative dialogue with the clients. And not just at the point of signing up, but throughout the service experience…’32

As mentioned above, the roles of Local Area Coordinators and support coordinators were designed to support participants and their families to exercise agency throughout. These roles are also designed to provide the check and balance of a ‘horizontal line of sight’ to provider performance and conduct. However, these roles only provide one type of horizontal mechanism, and under current settings,

‘… support coordinators are also market players… [they] form relationships with service providers and have a role in negotiating price and access. Some are service providers themselves. Some participants and their support networks are aware of the potential conflict of interest inherent here and their websites typically advise participants not to reveal all the details of their approved plan (their ‘package’) to the support coordinator. There are no formal qualifications for [the role] and those employed vary greatly in experience, knowledge and quality. Some LACs report ‘a certain amount of predatory behaviour’…’33

A Tandem survey respondent explained of their experience; ‘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’

Stronger regulation can avoid becoming unreasonably restrictive for providers, and participant empowerment can still be promoted if active quality development, and transparency and accountability, are also achieved through a number of ‘horizontal’ methods.

Tandem’s initial submission explained the crucial importance of grassroots peer support networks for people with psychosocial disability and their families, carers and supporters, particularly in regional and rural areas affected by social exclusion and strong mental health stigma. The opportunities for peer support and social and

29 Considine, M. (2022). The Careless State: Reforming Australia’s Social Services, Melbourne University Publishing, p. 189 30 Ibid.,, p. 191-2 31 Ibid.,, p. 188-192 32 Ibid.,, p. 204 33 Ibid.,, p. 127

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community connection represent invaluable ‘natural safeguarding’.34 Such networks contribute 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.’35 These networks also participate in and strengthen initiatives that promote social inclusion for people with disability, such as grassroots projects that tackle stigma. Tandem’s initial submission recommended 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.

Tandem’s initial submission also mentioned the value of alternative commissioning, formal advocacy services, and research in improving participant control, transparency and accountability - and therefore service quality. We wish to briefly expand upon the benefits of these approaches, and suggest that deliberative provider networks and sharing outcomes also be explored as additional valuable methods.

Independent advocacy services The significant need for strong advocacy that is free of conflicts of interest was highlighted by the NDIS Review. It is further illustrated by the experience of the Tandem Support and Referral Line, which provides independent non-legal advocacy support to family, carers and supporters regarding the NDIS and the Victorian mental health system. 58% of the 6296 calls received in the 2023-2024 financial year were NDIS-related, and the volume of such calls has quadrupled since 2021.

Insufficient formal advocacy often means that family, carers and supporters attempt to fill the gap; the considerable time and stress involved adds to often already unsustainable carer roles and therefore poor health outcomes and financial insecurity. Many callers to Tandem’s Support and Referral Line are overwhelmed and distressed. As Tandem survey respondents have explained:

‘Looking after an adult child who cannot function with her number of co-morbidities is all consuming, and continually trying to access the correct services to help her only to find the services cannot take any more clients, has destroyed any sort of career and almost rendered us homeless’

‘I support two children with disabilities and comorbid conditions. It has taken six years of negotiating services & supports to have them supported enough to enable me to re-enter the workforce on a part time basis’

‘The whole system is very hard to navigate and takes a lot of time. Very hard to do when you are caring for someone 24/7 who is suicidal’

Advocacy is required for a broad range of challenges, such as those related to: attempting access (often repeatedly); developing a sufficient plan; avoiding necessary supports being reduced upon plan reviews; responding to sharp practices and poor service provision, including neglect and abuse; and attempting to manage the consequences of the NDIS and mental health care as siloed systems. The NDIS Review also noted the considerable pressures upon family, carers and supporters to take on the role of providing support for decision

34 Bonyhady, B. & Paul, L (2023). What We Have Heard – Moving from defining problems to designing soluƟons to build a beter NDIS, What we have heard report (ndisreview.gov.au), p. 24 35 Brotherhood of St Laurence. 2017. Reforms to human services: Response to the ProducƟvity Commission, The mission of the community service

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

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making in the absence of adequate formal support to do so.36 Independent advocacy for family, carers and supporters in relation to their own needs is also necessary. As a Tandem survey respondent recounted;

‘Too often I have been told, it’s about the client (even when the client clearly can’t advocate for themselves). They do not take into account the needs of the full time carer who would be able to do more for the person they care for if some services were put in to help both the client and carer’

Tandem wishes to highlight the value of advocacy support that is tailored, and provided by peers. As the NDIS Review acknowledges, people with psychosocial disability and their family, carers and supporters face unique challenges in relation to attempting access to, and engaging with, the NDIS. Tandem’s Support and Referral Line illustrates the importance of a tailored, peer-worker model. By way of just one example, the Support and Referral Line staff can explain the complexities and nuances of psychosocial NDIS access requirements, and support callers to write a carer impact statement as part of the evidence to support access. This can ensure the potential participant’s needs and the extensive support the caller provides in relation to a non-physical disability is accurately captured (such as, for example, when a person experiencing persistent paranoia is physically able to eat, however, requires considerable time and support to do so if they believe the food may be unsafe).

While NDIS Navigation and support coordination are essential and the NDIS Review’s proposals to improve these functions are positive, external tailored support is also critical to avoid detrimental outcomes. Navigators providing this support can represent a conflict of interest, therefore advocacy that is entirely independent of the NDIS provides a necessary check on the system. While upcoming disability reform may address the NDIS’ current knowledge and skill deficit in relation to psychosocial disability, adequate improvement will likely take considerable time. Within a market-based model, ongoing advocacy is also critical to empower participants and their families to respond to and report exploitative, neglectful or abusive service provision.

The NDIS Review identified that there is ‘approximately twice as much demand for advocacy in comparison to supply’, and that funding is insufficient.37 Tandem’s Support and Referral Line is also illustrative here; despite the volume of NDIS-related calls having quadrupled in recent years, its funding for NDIS advocacy was reduced by a third in the 2023-2024 financial year. The Support and Referral Line has therefore lost staff when the need for their service continues to grow exponentially. As mentioned within Tandem’s initial submission, Tandem strongly supports the NDIS Review’s recommendation for increased funding for independent advocacy.

Community-led commissioning Tandem’s initial submission encouraged exploration of community-led commissioning approaches for psychosocial supports in rural and regional areas, to promote accessible, quality provision that is integrated within the local service landscape and that fosters social inclusion.

These models may involve funding arrangements other than personalised budgets which some can perceive as potentially disempowering and ‘one size fits all’. However, particularly in a thin market, alternative commissioning can have far greater potential to ensure quality service wherein participants have real agency, than a system dependent upon competition. Genuinely person-centred provision is promoted by shared decision-making throughout design, implementation, evaluation and governance, between people with lived

36 Bonyhady, B. & Paul, L (2023). Independent Review into the NaƟonal Disability Insurance Scheme: Final report. Working together to deliver the

NDIS | NDIS Review, p. 110

37 Ibid.,, p. 57-61

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experience (such as via peer led organisations), government and local service providers. Co-production is conducive to services having a strong outcomes focus rather than providers being incentivised by outputs. The transparency and accountability afforded by ongoing shared decision-making promotes genuinely responsive services that are provided with integrity. Alternative funding models can be conductive to staff having viable workloads and appropriate support, to avoid burnout and high turnover. A growing evidence base demonstrates how community-led commissioning can be cost-efficient as well as more effective.38 The process and benefits of co-production could also make a significant contribution to the important task of rebuilding trust in the NDIS.

Community-led commissioning has a more extensive history in countries such as New Zealand and the UK, however the current ‘Australia Cares’ project by Sydney Policy Lab is exploring this approach within the Australian context. Their All Together: A new future for commissioning human services in New South Wales report details benefits such as strengthening communities and expanding peoples’ opportunities, building relationships and trust, and experimentation and innovation. The report explains that the intention of community-led commissioning is ‘to shift systems away from a focus on narrow problem solving towards fostering wellbeing, from managing need towards developing agency and capability, from transactions towards relationships, and from containing risk towards creating possibility.’39

Deliberative networks of providers, open dissemination of outcomes, and co-produced research There are various mechanisms which strengthen provider expertise whilst increasing visibility of their performance and conduct that could make a significant contribution to improving disability support. The benefits of communities of practice - in which multiple providers regularly meet to share knowledge and insights, and discuss challenges and solutions – are well evidenced. Communities of practice afford providers support and guidance to continually improve service provision, and are conducive to workforce retention.

Methods to disseminate service outcomes (such as peer-to-peer reviews and benchmarking), as well as co produced research findings, are also effective in stimulating continual learning, accountability, and ‘voice and control’. As Considine explains;

‘a good general indicator of transparency involves what we might term ‘peer comparison’ of services in which the whole experience of the client is benchmarked and made part of ongoing dialogue. This is what dynamic customisation should look like. It has far less to do with the number of menu choices available in the marketplace at point of entry, and far more to do with the way a service is experienced by those inside.’40 These approaches require government be involved in facilitating their development.41

As Tandem’s initial submission recommended, ongoing professional development, supervision and engagement in communities of practice should be included within the Practice Standards. It also suggested the routine public reporting of outcomes and family, carer and supporter as well as participant experiences of service delivery. The

38 Australia Cares - Sydney Policy Lab; Goodwin, S., Stears, M., Riboldi, M., Fishwick, E., Fennis, L. (2020). ‘All together: A new future for commissioning human services in New South Wales’. 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. Reforms to human services: Response to the ProducƟvity Commission,

The mission of the community service sector in a Ɵme of change | Brotherhood of St. Laurence (bsl.org.au)

39 Goodwin, S., Stears, M., Riboldi, M., Fishwick, E., Fennis, L. (2020). ‘All together: A new future for commissioning human services in New South Wales’. Sydney Policy Lab, University of Sydney, All together a new future for commissioning human services in NSW - The University of Sydney, p. 10 40 Considine, M. (2022). The Careless State: Reforming Australia’s Social Services, Melbourne University Publishing, p. 206 41 Ibid.,, p. 208

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initial submission also echoed the NDIS Review’s call for greater funding for academic and other research projects to improve provision, and recommended that such projects are co-produced with people with a diverse range of disabilities as well as family, carers and supporters.

Tandem further recommends that the federal government;

  1. Facilitate the establishment of deliberative provider networks, such as communities of practice, including for Local Area Coordinators and support coordinators, and the open dissemination of service outcomes between providers.
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