NDIA Accountability Project

Submission 118 — Mind Australia — The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition

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Mind Australia Limited response to the JSC inquiry into the provision of services under the NDIS for people with pychosocial disabilities related to a mental health condition

Mind Australia Limited

Response to the Joint Standing Committee inquiry into the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition

June 2011

10 March 2017

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Introduction

Mind Australia Limited (Mind) is a leading non-government community managed specialist mental health service provider. We have been supporting people who are dealing with the day-to-day impacts of mental illness, as well as their families, friends and carers for 40 years. We deliver a wide range of recovery-oriented services and supports to people challenged by mental illness and psychosocial disability, including: personalised support; group support; care co-ordination; allied psychological services; residential services; family and carer services; and, telephone helplines and online forums.

This year, Mind will provide support to around 12,000 people across four states, delivered from 64 different service locations.

Mind will operate as a provider of services and supports who have NDIS funding packages in multiple locations across Australia. We are currently providing services to over 60 people in the NDIS in the North East Melbourne Area (NEMA).

In addition to our service delivery, over the last six years we have made a substantial investment in a

research program  that has contributed to  public knowledge on mental health recovery and

psychosocial disability. Part of our research program focuses specifically on the NDIS and the inclusion

of people with  disability associated with mental  illness  in the Scheme. We have funded the

development of three literature reviews and two original research studies. The first of these looked at the support preferences of people with individualised funding and was completed in 2014. This can be accessed via our website at:

https://www.mindaustralia.org.au/assets/docs/research/Barwon%20Report_People%20Making%20Ch oices_2014_FINAL.pdf

The second research study, which focuses on the experiences of choice and choice-making people with psychosocial disability in the context of NDIS, is currently underway and is expected to report towards the end of this year.

We  also draw  the Committee’s  attention  to  the  three  high  quality  literatures  reviews we

commissioned as part of our research program. Each is relevant to the operation of the NDIS for people with psychosocial disability. These can be accessed via our website, as follows:

  1. Effective evidence-based psychosocial interventions suitable for early intervention in the NDIS: promoting psychosocial functioning and recovery (2016) https://www.mindaustralia.org.au/assets/docs/research/Mind_report_early_intevention_NDIS_fu ll_version.pdf

  2. Implications for family carers when people with psychosocial disability have individualised funding packages: literature review (2015) https://www.mindaustralia.org.au/assets/docs/News%20&%20Media/Mind_Literature_Review.pdf

  3. Nicholas et al (2014), Mental health and the NDIS: a literature review https://www.ndis.gov.au/html/sites/default/files/files/Mental-health-and-the-NDIS-Literature

Review.pdf

We also draw on a paper prepared by Dr Gerry Naughtin (Mind Chief Executive) and Janet Meagher AM, presented to the Independent Advisory Council (IAC) of the NDIA in 2014, entitled ‘Issues paper: implementing the NDIS for people with disabilities related to mental health issues’ (Meagher and

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Naughtin 2014). We note that this paper was accepted by the NDIA Board, and that the issues it

outlines  remain   current.  The   paper  can  be   accessed   at   the   following   location:

https://www.ndis.gov.au/about-us/governance/IAC/iac-advice-mental-health

This submission focuses issues at the policy and Scheme design level, rather than issues in trial and transition arrangements. At various points in our submission, we will draw on examples of operational issues in order to explain an aspect of policy or Scheme design that we would like to bring the Committee’s attention to.

We have structured this submission to address each of the Terms of Reference (ToR) in turn. Prior to addressing each ToR, we make a number of general comments.

General comments

Mind is a strong supporter of the NDIS and the inclusion of people with psychosocial disability in the Scheme. As the NDIS Act 2013 makes clear, the Scheme is intended to be a primary vehicle to fulfil Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (CRPD), and we believe that its design and operation is largely consistent with the intentions of the CRPD.

The introduction of the NDIS offers much to those people with psychosocial disability who are deemed to be eligible for an individual funding package. In our opinion, the strengths of the NDIS are as follows:

  • It provides a strong funding base for improving the quality of life and social and economic participation of Australians who are significantly functionally impaired by mental illness, and who experience, as a consequence, high levels of psychosocial disability. This cohort of people are unlikely to get assistance that improves their quality of life without inclusion in the NDIS.

  • The Convention on the Rights of Persons with Disability (CRDP) clearly identifies people with long term mental health issues within the scope of the Convention. It would be unfair and discriminatory to exclude this significant segment of the Australian disability population from the advantages of the Scheme.

  • The majority of participants in existing Commonwealth programs such as Partners in Recovery (PIR) and PHaMS (85%) will be eligible for NDIS based on current guidelines and evidence. It is more cost effective and equitable to manage these services through one funding program than it is to withdraw them from the Scheme and run disparate small programs that may be subject to budget cutbacks.

  • The NDIA have recognised weaknesses in some of the operational guidelines and processes in their responsiveness to the specific requirements of people with disability associated with mental illness. In our judgement, the Agency has been open to theses limitations, has consulted widely with the mental health sector about these issues and has put in place strategies to fix these weaknesses – and continues to do so.

  • The mental health sector, through the strong advocacy of Mental Health Australia (MHA) has highlighted the issue that there are many people with serious mental health issues who do not meet the NDIS eligibility criteria will miss out on access to services. Mind supports the position that it is critical for the Commonwealth, State and Territory Governments to provide

    adequate funding to respond to this population group, beyond what the NDIS and

Information, Linkages and Capacity Building (ILC) Framework can provide. It does not consider

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that it is sensible to withdraw funding from the NDIS to cover the costs of services than were never intended to be covered under the NDIS Act 2103.

Our position is that the implementation of the Scheme poses a significant challenge for the mental health system broadly as it comes to terms with a newly constituted boundary between what is mental health and disability. We are concerned that there are some unintended consequences of the introduction of the NDIS that need to be addressed in order to avoid significant impact on individuals with mental health issues and their families and carers, and on the public purse.

In very general terms, the mental health system is structured around four categories of intervention and support:

  1. Medical and clinical services for people who are acutely unwell, aimed at helping alleviate distressing symptoms, seen as a pre-requisite to beginning to build or rebuild a regular life;

  2. Medical and clinical services that assist people with ongoing management of distressing symptoms, once they are out of an acute phase of illness;

  3. Rehabilitation services and supports to help people get their lives back on track after a period of illness. These do not deal with the symptoms of illness, but with its effects and impacts on people’s ability to function and pursue their regular life; and

  4. Disability supports for those who experience significant and ongoing impairment in their ability to function following illness. Like the rehabilitation services, these do not deal with symptoms, but provide assistance to people to enable them to lead a life of reasonable quality and meaning despite the existence (or otherwise) of symptoms. It is these supports that will be funded through the NDIS.

The four different kinds of intervention do not represent a continuum of care or stepped model of service provision. Some people only need to access medical and clinical services, whilst others need assistance from multiple or all kinds of service – sometimes at the same time. For instance, many people with psychosocial disability who need ongoing support to lead a reasonable life also utilise the services of a GP and psychiatrist to manage the symptoms of their illness, and may need support from a psychologist or allied health professional to help them deal with the emotional dimension of their illness.

We note that the first two categories are clearly health needs, addressed the different parts of the health system including primary and specialist care, public and private, and hospital and community settings. The fourth category clearly relates to a disability need and may be addressed by the NDIS and/or state/territory disability programs. As we move forward into the NDIS world, it is the third category that we are concerned about. We question whether current policy arrangements have unintentionally created a gap in what can be offered to people who experience mental illness to help them recover and return to a valued and purposeful life. An example helps to illustrate this point.

Two women now  in  their  sixties,  both  diagnosed  with  schizophrenia, were  both

institutionalised in their twenties. With de-institutionalisation, both returned to live in the community. Both were provided with housing and both were able to access clinical and medical care to help them manage the symptoms of their illness. One was provided with substantial support to help her build the skills she needed for living independently. She has

spent over  thirty years  in paid employment, achieving a great deal  in a  satisfying

professional career. She also married and now is spending her retirement enjoying her family, undertaking a range of voluntary roles and some paid consultancy work in her professional field. The other received no support other than the medical and clinical assistance, did not enter paid work and has lived all her life on a pension. Her physical and mental health have each suffered, and she now lives in an aged care home.

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We understand that there are many factors that influence an individual’s life course. However, this example is drawn from our personal experience, and serves to illustrate the nature of psychosocial rehabilitative support and the role it can play in assisting someone get their life back on track after even a period of most severe illness. Good cognitive rehabilitation has an important role to play in relation to individual capacity. The literature review on early intervention provides an evidence base for the effectiveness of interventions that may assist people to ‘recover’ and ‘rehabilitate’, as in the third category above.

We note too that the nature of functional impairment associated with mental illness is varied. People with the same diagnosis and similar social and economic status can experience the impact of their illness in very different ways. Generally speaking, the functional impact of mental illness can affect people’s ability to think, relate, communicate, take care of themselves and their home environments and those around them, leave the house and make their way around the community in order to enjoy what it has to offer and to do the ordinary tasks of life that most of us take for granted. However, the way the impairment takes hold is not always obvious to people who are unfamiliar with psychosocial disability. To the untrained or inexperienced eye, it can look like laziness, disorganisation or sheer bloody-mindedness.

Returning to the four parts of the mental health system, we note that policy and funding are spread across Commonwealth, State and Territory governments, making it complex to individuals to navigate and for agencies to govern. At the same time as the NDIS is being rolled out, there are major reforms at Commonwealth level to carer support, primary health and to State/Territory mental health and disability programs. Resources are shifting, and the supports that people could once access may no longer be there, or be unavailable to cohorts used to getting assistance from them.

We would like to draw the Committee’s attention to our views some of the overarching outcomes of the current reform processes in mental health including the NDIS mental health component. These are:

  1. There is a loss of focus on and funding for mental health rehabilitation that we regard as a critical component of a mental health system that wants to both manage people’s experience of symptoms and their ability to lead a life of meaning and purpose – or put another way, deal with immediate mental health crises and diminish the likelihood of disability developing as a result of poorly managed rehabilitation.

  2. Where there is a shortfall in support, the work of caring falls back on family members and friends. Many informal mental health carers have had to give up employment to undertake their caring role, are socially isolated and experience poor mental health and wellbeing associated with being a carer. Current reforms threaten to remove or reduce supports available for mental health carers at a time when more, not less, support is needed.

  3. Inadequate focus on mental health rehabilitation will also impact on mainstream service systems that are not well placed to accommodate people with psychosocial disability. Rehabilitation support is a vital component of being able to access these broader social and economic resources. This has implications for the effectiveness of the Information, Linkages and Capacity-building (ILC) framework of the NDIS.

Because of its scale and geographical reach across four states, Mind is able to identify and recognise the weaknesses in the current mental health systems in Australia. Our position is that there is a need for on-going policy reform and additional funding for mental health support. We also recognise that a key priority is to get the NDIS right for the 64,000 people with mental health issues who are estimated to be eligible for it. This is their right and they have been neglected for too long in Australia.

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We do not support a strategy where funding is removed from the NDIS to fix funding gaps in the broader mental health system. Rather Mind considers that it is critical to leave the funding in the Scheme, and continue to work to ensure services work effectively for this specific target group.

Mind recognises that there are a range of areas where further policy work is required and practice within the Scheme could be improved. The remainder of this submission highlights some of these areas.

Terms of Reference

a) Eligibility criteria Assessment process and criteria

The current scope of the NDIS means that only those Australians who are substantially and permanently impacted by psychosocial disability are eligible for the NDIS. We agree that this is an appropriate scope for the Scheme, and consider the disability requirements as laid out in the NDIS Act to be an adequate expression of this scope. Whilst the Act makes adequate provision for the episodic nature of mental illness (reinforced in the 2015 review of the Act, undertaken by Ernst and Young), it provides limited guidance on the definition of ‘permanence’. As the IAC issues paper makes clear, there are a number of problems that stem from this (Meagher and Naughtin 2014, pps 13-16). These are both conceptual and practical in nature.

Firstly, there are a large number of people who experience some degree of psychosocial disability and who need assistance for some period of time or permanently in order to lead a reasonable life. Since there are many more people who have some degree of psychosocial disability and/or need some support to gain or regain a meaningful and contributing life, having a mechanism for assessing eligibility that can distinguish between degrees of severity of functional impairment and the likelihood of permanence is critical. This is a matter for both Scheme sustainability and individual outcomes. Without a reliable, standardised, validated means of assessing functional impairment for this cohort, people may not get timely assistance they need from the right part of the service system. We are concerned that current practice, where diagnosis is used as a proxy for this kind of reliable assessment of functional impairment can result in a situation where someone with well-managed schizophrenia and relatively high capabilities for independent living is more likely to get into the Scheme than someone with a diagnosis of Borderline Personality Disorder (BPD), a history of complex trauma and significant need for support in order to live independently.

A systems view of this situation illustrates that, as well as the over-provision of support for the person with schizophrenia, the shortfall in support for the person with BPD is likely to lead to greater impost on the public purse through use of intensive services like hospital, income support and criminal justice. Although the overall cost to the NDIS may be less, it is likely to be greater for the Australian tax-payer overall.

The literature review undertake by Nicholas and colleagues (2014) examined existing evidence for the long-term course of mental illness, and made the following findings (pps 27-28):

  • The functional impairment arising from mental illness can last for a long time – for some people, for decades after the first onset of illness

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  • It is also relatively rare to experience a persistent, unremitting long-term course of mental illness without periods of remission or recovery

  • Severe mental illness is most likely to be characterised by a course that combines illness episodes with periods of recovery (including long periods), where symptoms abate and functioning improves

  • It is difficult to predict the course of severe illness and the impact it will have on functioning: what research evidence there is relates to recovery at a group level (ie for any category of illness or diagnosis). There is very little evidence to assist in prediction of outcomes at an individual level

    • Additionally, at an individual level, it is important to distinguish between fluctuations in

symptoms and in changes in functioning or relative disability. The evidence demonstrates that these do not act consistently across illness types, population groups or for individuals. Whilst there is a definite link between symptom severity and level of functioning, symptoms may interact with other personal, social and environment factors and this then determines the individual’s level of functioning.

As mentioned above, current practice in assessment of eligibility for people with mental illness relies heavily on diagnosis and evidence from GPs and psychiatrists. As a means of determining disability, this is a blunt instrument because it fails to take into account the complex interplay between symptom severity and individual context over time – including the cumulative impact of episodes of illness on a person’s broader life and ability to participate socially and economically.

The episodic nature of mental illness and its highly individual trajectories in terms of recovery and return to an independent level of functioning makes the task of assessment of eligibility very tricky. Unlike some other disability types (for instance, spinal cord injuries, autism or Acquired Brain Injury), there is no validated, standardised instrument to quantify either ‘permanence’ or the degree of functional impairment that someone experiences as a result of mental illness.

The lack of guidance on assessment of permanence and severity of impact means that eligibility and level of support are established on a medical basis, where a clinician or medical practitioner has made the judgment that there are no effective treatments available that would remedy the symptoms that the individual experiences. In the first place, this conflates a judgement about treatment efficacy and suitability with a judgement about the likelihood of current levels of functioning being permanent.

This  is particular problematic for people with mental  illness because of the variations in how

individuals respond to available treatments. Not all consumers of medical and clinical mental health interventions go on to develop a psychosocial disability that requires support to participate in the community. Many will, with the right support at the right time, go on to achieve a quality of life that enables independent participation in social and economic activity. Others will require supports continuously and intensively, whilst others will need them only episodically. Even amongst those with diagnoses that are regarded as ‘severe and permanent’ (for instance, schizophrenia), there are some who are left with minimal impairment and remain independent and capable. For others, impairment may continue long after symptoms have disappeared.

Without access to a medical practitioner who knows the individual well, and has been able to observe

them over a period of time,  it  is very  difficult for individuals to produce ‘evidence’ that  will

demonstrate their eligibility under the disability requirements of the Act. This means that access to the Scheme risks being inconsistent, with unintended consequences that some people will get in who do not need the level of support intended to be provided by the Scheme, and others who do need it will not get in.

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The development of a standardised assessment tool for psychosocial disability would go a long way to ensuring that there is access to the Scheme that is consistent with access provisions in the NDIS Act

  1. A tool would also place greater weight on assessment of functional impairment rather than the proxy of severity of diagnosis. We believe that this would help overcome the problems we have outlined, and ensure that the people who need ongoing disability support associated with mental illness would be the ones who were most likely to get it.

We encourage the NDIA to:

  • develop working definitions for psychosocial disability; and
  • fund work to establish standardised and validated assessment tools to apply to people with functional impairment associated with mental illness.

Assessor/planner capabilities

According the most recent NDIA quarterly report, across the Scheme as a whole 86% of access requests have been found eligible (NDIA 2017, p56). However, for people with psychosocial disability the rate of eligibility determination is 71.3%, the fourth lowest of any disability group. Only other physical and other sensory disabilities were lower. Our experiences in the North East Melbourne Area (NEMA) indicate that the majority of the current participants who are coming to us to purchase psychosocial disability supports with an NDIS funding package have got into the Scheme on the basis of a second disability type. We are aware of other clients who are equally impaired in terms of their psychosocial functioning and yet have been deemed ineligible. Some of these are people we have been working with in our Individual Client Support Packages (ICSP), Personal Helpers and Mentor Scheme (PHaMS) or Partners in Recovery (PiR) programs that we run in NEMA and know well. Our

observation at this early stage of transition to full Scheme  is that  it  is particularly those whose

psychosocial disability is associated with difficult life situations arising from complex experiences of familial and institutional abuse and trauma who are missing out.

We argue that a key factor in this pattern of eligibility is impacted by the knowledge within the NDIA of psychosocial disability, particularly amongst those officers making decisions on access requests where judgements around what constitutes ‘permanence’ are critical. We have a similar concern about the level of capability amongst NDIA/LAC planners and their ability to make sound judgments about what might constitute ‘reasonable and necessary supports’ in any given situation. Assisting someone with a

psychosocial  disability to identify goals and supports  specific knowledge of mental  illness and

psychosocial disability, as well as the right skills and attitude for working with this cohort. Many people with psychosocial disability have significant experiences of stigma and discrimination, including in service systems, and are rightly fearful or anxious about processes such as planning meetings. They do not always know what is best for them, and may want professional guidance and advice on what will work best for their situation. Since many may also have difficulties in cognitive processing, this cannot always be solved by the provision of information – particularly information that is written or web based.

Our experience in NEMA suggests that not all LACs have the capabilities to understand and make judgements about the effects of psychosocial disability on an individual, nor to understand what their family and friends do already or can reasonably be expected to do.

In relation to the involvement of those people who provide informal support and care to the NDIS participant, we note that the NDIS rules make provision for families and carers to have a separate conversation with planners and LACs. However, this is not widely known about. In addition, not all planners understand or appreciate the enormous amount of support that informal carers may provide

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to people with psychosocial disabilities – and the participants themselves may also be unaware or unwilling to acknowledge this. As a result, families and carers may miss out on the provisions within the NDIS price guide to get support to help them in their caring role.

Finally, we note that the majority of committed funding in NDIS plans for people with psychosocial disability is in Core funding. We argue that planning capability plays a role in which funding categories support dollars are committed to. We argue that planning based on a good knowledge of psychosocial disability – like good recovery rehabilitation practice – will result in greater commitment of funding to Capacity Building, and ultimately to better outcomes and enhanced independence for participants with psychosocial disability.

We encourage the NDIA to:

  • Monitor who gets into the Scheme and who does not in order to determine patterns as they apply to people with psychosocial disability across both primary and secondary psychosocial disabilities;

  • Monitor commitment of funding for participants with psychosocial disability across Core, Capacity Building and Capital to determine whether there is a flow from Core to Capacity Building as people use the Scheme over a number of years; and

  • Provide training for a small number of planners in each NDIS region to undertake functional assessments that can then be used as the basis for referring people to NDIS, other community supports and/or mainstream supports.

b) Transition of Commonwealth Government funded MH programs and provisions for people who are ineligible for NDIS

Broadly speaking, we agree with the figures put forward by Mental Health Australia (MHA) in their paper on mental health and NDIS (Mental Health Australia 2016). MHA estimate that the number of people each year who need psychosocial supports for functional impairment caused by mental illness is far greater than the 64,000 allowed for in NDIS projections. MHA’s figures are based on the National Mental Health Service Planning Framework 2015. Although this document was not made public, MHA have been able to use it to estimate that there were an estimated 290,000 individuals in 2016 with severe mental illness who required some form of community support, including 180,000 adults who required individual community support. The NDIS revised modelling only provides individual funding to 64,000 of this cohort.

In addition to these figures, there were 154,000 mental health consumers whose carers require some form of support.

We do not think that the total cohort of 290,000 people with ongoing psychosocial support needs in the community should be included in the NDIS, but we are concerned that the current cashing out of community mental health funding and funding for carers in some States and Territories will leave a gap in the provision of supports for some consumers and some mental health carers. Aside from the transfer of State and Territory funding to the NDIS, we make the following comments about the PIR program.

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Partners in Recovery (PiR)

The target group for this program is marginalised people with mental health issues who need to access and utilise a wide range of services, and who need help to co-ordinate their care and support. We consider that the target groups for PiR is consistent with the target group for the NDIS ie people with permanent and severe psychosocial disability. We argue that there is no need for a PiR program outside of the NDIS.

As stated, we believe that the vast majority of PiR clients would be accounted for in the estimated 64,000 people with psychosocial disability in the NDIS projections. This group is likely to require ongoing access to support co-ordination as part of their NDIS package. They will also need support provided by organisations who have deep expertise in working with people with psychosocial disability and complex needs. Our view is that mainstream disability providers do not have the capabilities to provide supports to this group, and we are concerned that the current price guide fails to recognise the complex capabilities involved in providing Core supports to people in the PiR group.

We would like to see a model of support co-ordination that is conceptualised as an ongoing function, aimed at assisting people with complex needs build their capacity over a long period of time. Whilst we consider that the current NDIS price of $92 per hour is adequate for the support co-ordination work for this cohort, we are concerned that the price for many kinds of core and capacity building supports are too low.

Finally, we argue that further work is required to ensure that planners understand the support co ordination need for this group, and build it into people’s plans over multiple years.

Implications of funding transition for mental health families and carers

In 2015, Mind commissioned the University of Queensland to undertake a major research study on the economic value of informal mental health caring in Australia (Diminic et al 2017). The report quantifies the number of informal mental health carers in Australia, the work they do and the estimated cost of replacing this work with paid care. It will be launched on 23rd March 2017 in Canberra. On the basis of this research and other work, we estimate that around 90,000 carers of people with a mental illness will be left without vital supports once the NDIS is rolled out. Without adequate support, carers are forced to give up paid employment and eventually will be unable to continue in their caring role, with personal and public consequences. When carers burn out, the consequences can be personally devastating. Australians also cannot afford an informal care system that no longer works.

If programs that support people who are not NDIS eligible disappear (ie PHaMS and D2DL), the burden will fall on carers. The University of Queensland report indicates that around half of primary mental health carers have unmet support needs, and around a third are not aware of the supports that are available to help them in their caring role – including payments, income support and services. This situation is made worse when informal carers loose access to respite and supports that they have defined as being helpful to them. The MHR:CS is one such program that provides flexible supports to carers, to assist them maintain their caring role.

We understand that half of the funding for MHR:CS is in scope for NDIS. We are concerned that many people who are caring for someone outside of the NDIS will no longer be able to access the supports they need. As mentioned in the introduction to this submission, the extent of reforms across various sectors may inadvertently impact on mental health carers and on their care recipients. We are very concerned that there may be a reduction in available support at a time when existing supports for

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mental health carers need to be protected and funding increased to ensure that they can continue in their caring role without deleterious effects on their health and quality of life.

Late in 2016 the Department of Social Services (DSS) released the service delivery model for its proposed carer support service system. We note that this model appears to be based on the assumption that carers will be able to access respite services through the service system that their care recipient uses. We believe that the situation for people caring for someone who is an NDIS package recipient is not straightforward. It is possible for carers to get respite if the individual they care for includes in their plan activities that would give their carers respite. This is an indirect form of respite, and can only be included in the individual’s plan if the individual asks for it. Many individuals are unaware of the work that their families and friends put into their care, and many families would not want to see funding diverted away from their care recipients’ needs. Although carers can ask for a separate meeting with planners, our observations are that very few people are aware of this, with the result that carers needs are not taken into account. These, and other issues pertaining to the impact of NDIS on mental health carers, are well documented in various publications from a range of organisation, in particular MHA and Carers Australia. There is the risk that, without consistent and recognition of participants’ informal care situation and appropriate accommodation in individual plans, carers may become unable to provide informal supports and a greater burden be placed on NDIS to provide funded supports to individual care recipients.

We encourage:

  • DSS to review the broader arrangements for mental health carers, including the transition of MHR:CS funds into the NDIS and the provisions in new carer support system to ensure there are not unintended gaps; and

  • NDIA to monitor the take-up of the provisions for carers to be involved in planning meetings and patterns of use of items in the price guide aimed at supporting carers, and publicise the arrangements through national and State/Territory mental health carer peak bodies.

c) Transition of state and territory Government funded MH programs and provisions for people who are ineligible for NDIS

See previous ToR.

d) Scope and level of funding for MH under ILC Framework We understand that the level of funding set aside for mental health within the ILC funding is in the order of $30 million. We do not consider this sufficient to meet with the psychosocial disability support need of people who will not be eligible for NDIS. Nor will it accommodate the mental health rehabilitation needs of people who need time and help to get their lives back on track after a period of mental illness.

Once again, we run into the conceptual and practical problem of the need to rethink the boundary between what constitutes a psychosocial disability versus a mental health rehabilitation need. Prior to the introduction of the NDIS, State and Territory Governments funded supports that were badged as ‘psychiatric disability rehabilitation’. The separation of what constituted a disability support and what was a mental health rehabilitation support was less relevant because both were provided for through a range of State/Territory and Commonwealth programs aimed at providing broad rehabilitation and

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disability support for people who experienced mental illness. Services were provided by NGOs, and were understood to be meeting a different kind of need to the clinical support and case management that area mental health services provided. As mentioned previously, the Commonwealth government supplemented the mental health rehabilitation component with programs such as PHaMS, D2DL and PiR. This structure clearly recognised the cascading needs across health, rehabilitation and disability.

As we have said a number of times in this submission, the introduction of the NDIS appears to have

inadvertently knocked out the  rehabilitation component, and  left the funding of  less severe

psychosocial disability to the ILC. Whilst the figures for levels of funding are not available, we argue that the $30 million ear-marked in the ILC for psychosocial disability is in the order of a tenth of what was previously available for rehabilitation and recovery support just through Commonwealth funded programs, without taking into account the loss of State/Territory programs that have been cashed out into the NDIS.

As well as leaving many many people without access to supports they need to recover and regain a

degree of independence and  life quality, we believe that Australia will not be able to meet  its

obligations to people with psychosocial disability under the CRPD.

We are also concerned that the current approach for ILC, combining competitive funding for LACs and a series of grants, will not deliver the co-ordinated and consistent response to the lower levels of psychosocial disability support needed in the community.

At this stage, we believe that many mainstream services lack sufficient understanding of mental illness and psychosocial disability to be able to provide welcoming, competent and high quality service to people. Many of our clients experience stigma and discrimination on a daily basis in their interactions with mainstream services. This further limits the efficacy of the approach posed in the current ILC policy.

We would like to see a stronger approach to dealing with attitudinal discrimination against people with psychosocial disability and mental illness more generally, and a centralised program to develop community capacity to respond inclusively. We believe that the work of tackling discrimination and building community capability be delivered by a network of mandated lived experience organisations. Such a program could be administered by DSS but with control lying with peer organisations. We believe that this co-produced element would reflect a contemporary approach to governance and community development.

In support of this position, we note the concluding observations in the first report on Australia’s implementation of the CPRD (United Nations 2013, section III.A.8-12). The Committee on the Rights of

Persons with  Disability determined  that,  whilst  Australia had made good headway with the

introduction of the NDIS, the funding available for peer-led disability advocacy organisations remained inadequate, and people with disability were still insufficiently represented in the development of mechanisms to ensure their full participation in all aspects of Australian life.

e) Planning process, and role of PHNs As we mentioned in relation to the first ToR, we are concerned that the implementation of the participant planning process needs further knowledge and skill development amongst planners to ensure that it works as well as possible for people with psychosocial disability.

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This view is informed by our substantial experience of working with people with psychosocial disability, our experience in NEMA and our work on a research project that Mind is currently leading in the Barwon, Hunter and Perth Hills trial sites. The study is exploring the lived experiences of ‘choice’ and ‘choice-making’ in the context of NDIS of participants with psychosocial disability. The planning process and planner capabilities have emerged as a key topic of concern for participants.

People with psychosocial disability have some specific needs in terms of engagement that need to be taken into account in plan preparation. As well as degrees of cognitive impairment that affect organisational and planning abilities, many people with mental illness have significant experiences of stigma and discrimination. They find it difficult to engage with services unless they have been able to establish a trusted relationship with those who support them and work with them. These factors impact on the length of time people need to think through and articulate life goals, and who is best placed to help them do this and to make decision about what is in their best interests. This is not a diminishment of their capacity to choice, but an important component of how they make an informed choice that is in their best interests. A process that involves a one-off interview or a phone call in place of a face-to-face meeting does not work for many people in this group. This is compounded by staff turnover over within the NDIA, meaning that participants rarely see the same planner in second and subsequent plans. As well as the lack of trust, some participants are unable to talk about some aspects of their life without serious distress. In these instances, even the presence of an advocate or support person is not enough to ameliorate the distress.

Less reliance on paperwork, being able to meet with the planner more than once, having a trusted professional represent certain needs or aspects of their life without having to be present are all suggestions for improving the planning process that participants have made to us. The more marginalised an individual is, the less able they are to engage with the planning process. For people who have had long periods of homelessness or institutionalisation, or for those who have been subject to compulsory treatments, any engagement with ‘authority’ can be very difficult. Yet these are often the people who most need the assistance of the NDIS.

Finally, high quality, effective planning is essential for achieving capacity building intention of the NDIS. There needs to be a particular focus on the period after My First Plan, with a six month focus on preparing for the next plan so that it focuses more on capacity building. For many people in this cohort, ongoing support co-ordination will facilitate this kind of development. We also suggest that work needs to be completed on reference packages for people with psychosocial disability, and then used to guide the individual planning process. Reference packages would assist planners and support providers to focus on capacity building over subsequent plans.

To this end, we reiterate our statement under the first ToR that planners need specific expertise and experience to work with people with psychosocial disability. Our experience indicates that some offices are building capabilities to work with diverse needs, but not universally.

In relation to the role of PHNs, we do not believe that this is relevant to planning at the individual level, and suggest that NGOs are better placed to do this because of their experience and expertise in working to support recovery. We would like to see the NDIA consider funding NGOs to do plan preparation work with people with psychosocial disability who are marginalised or excluded along multiple dimensions.

PHNs may have a role in regional planning, market development and identification of possible market failures. However, their current guidelines on mental health are of a more limited scope. They would need to be given a specific brief in order to undertake a regional planning and market monitoring role.

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Moreover, it is unclear how this would relate to NDIA’s responsibilities in market stewardship and the LACs role in planning and market development.

f) Spending and projections on people with psychosocial disability The most recent publically available figures that give a break down by disability type on planned/actual expenditure per participant plan indicate that an average of around $35,000 had been committed per plan per 1571 participants with psychosocial disability (NDIA 2016, p40). Assuming this pattern continues as the NDIS is rolled out, this is in line with the revised projection of around $2.2 billion being spent on 64,000 people with psychosocial disability.

However, the most recent quarterly report indicates that only 53% of the committed funds for people with psychosocial disability had been spent (NDIA 2017). We are concerned that difficulty in accessing the right kind of support from organisations that participants trust is contributing to this low expenditure.

We suggest that the conceptualisation of ‘disability’ and its operationalisation through the price guide may be too narrow to offer the kinds of supports that people with psychosocial disability need – or support in the way they need it. Seemingly straightforward tasks, like going shopping, dealing with a bank or Centrelink or using the local gym can be very difficult for someone who, for instance, experiences anxiety or panic in public places or crowds, or who dissociates when they find themselves in a difficult or unexpected situation. Supporting someone in these tasks often requires a worker with a higher level of competency than the entry level for disability support work. Whilst the price guides for the NDIS recognise varying levels of ‘intensity’ in support provision, the application of this for people with psychosocial disability is less well understood (again, relating back to planner capabilities as well we the need for ongoing support co-ordination). The revenue impact on experienced mental health NGOs is such that many are no longer able to offer their traditional array of services, with a flow on effect for participants.

Narelle needs assistance with housework, shopping and cooking. She has used her NDIS package to purchase assistance from several different organisations, but has not been able to find a worker who she feel safe with. Extreme anxiety in public places, associated with a history of trauma, makes it difficult for her to leave her house. She needs a worker who will support her in exactly the way she wants them to. Unfortunately, although workers start off well, few are able to maintain the regime she sets and arguments ensue about how things should be done. This is very stressful for Narelle, and on two occasions, needing to change worker has also seen her hospitalised because of deterioration in her mental health.

We are concerned that the current pricing structure, without a comprehensive assessment process, reference packages and planners with specific expertise in psychosocial disability and mental health, will be restrictive for organisations who specialise in supporting this population – and ultimately limit choice and control in the NDIS market for participants with psychosocial disability.

g) Role and extent of outreach services to identify potential NDIS participants There is a role for mental health NGOs in identifying and engaging with people who are marginalised to support them to access NDIS – as well as other services that they may need. To the extent that a single outreach function could assist people access more than one service system, it is a shared responsibility between the NDIA and State/Territory governments.

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NGOs are well placed to undertake this work. They are often already in touch with such individuals or aware of where they are. They have models of assertive outreach that they can deploy, and staff with skills to undertake this work. However, it is not cost-neutral and needs to built as a funded service within NDIS.

One approach would be to build it into LAC guidelines, and require that they implement strategies to proactively identify people who may require NDIS support but who, for various reasons are unable or unwilling to make application without assertive intervention. LACs would then need to develop a model of assertive outreach and engagement, for instance using community development principles and approaches.

Since the NDIA intends to invest significantly in the LAC, it is important that they have specifications about who they need to market their services to. Guidelines should cover the need to outline what they are going to do about people who are disengaged, excluded, vulnerable and marginalised from services and how they will link to people who do have contact with them, but need more support to access services through NDIS.

h) Provision of service for NDIS participants in forensic settings People need disability support regardless of context, to ensure that Australia complies with the CRPD. The question of which government and agency should fund disability support for people who are detained needs to be resolved. We note that people who are currently detained in the Victorian forensic residential service continue to receive the Disability Support Pension. A similar arrangement could be extended to NDIS funding.

We suggest that a plan review should take place at entry/exit to/from a forensic/criminal justice service, and supports continued whilst the individual is incarcerated, funded either by NDIA or the forensic or criminal justice systems. Our current experience is that this only happens within program streams that are specifically funded to do pre-release, for instance, the Victorian Multiple and Complex Needs Initiative (MACNI).

We also suggest that this is an area that needs more attention, from both practice and legal perspectives.

i) Any related matter We strongly hold the view that there needs to be a review of broader policy and system arrangements to identify unintended gaps that have arisen as a result of the implementation of NDIS. Put another way, the review should focus on the intersection between health and disability. This is not just a question of reviewing existing provision, but requires consideration of how the mental health need is conceptualised or understood in health and disability settings, and the implications of this in terms of current system configuration. We are particular concerned that there is now incomplete coverage of

psychosocial  rehabilitation – a  matter  that  sits  across  State/  Territory and Commonwealth

jurisdictions. Without focused provision of support for psychosocial rehabilitation, many people who

would otherwise gone on  to  gain or  regain independent and  productive  lives  risk become

incapacitated and disabled by their illness experience.

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Finally, we commend the NDIA for shifting from its initial stance in relation to language that focused on ‘permanent disability’. In the early days of the NDIS trials, considerable concern was raised particularly from the consumer movement about the perceived incompatibility between the language of disability (permanence, acceptance, inclusion and a rejection of rehabilitation or recuperation) and the language of mental health (recovery, rehabilitation, hope and self-determination). The language of recovery has been important to the mental health sector and to the consumer movement because it offers an alternative narrative to the medical version of illness, deficit and deviance. It is important that we do not lose the gains of the last two decades by sticking rigidly to the language of the NDIS Act, but that we find ways to allow people with disability associated with their experience of mental illness to self describe and self-define. Language is important because it is about the ability to describe one’s self in a preferred way: choice and control over identify is a core tenet of recovery and wellbeing and is consistent with the aims of the NDIS. It is also important in quite pragmatic ways. Clarke and Newman found that people were reluctant to engage with public services in the UK where they were required to identify themselves as ‘customers’ (Clarke and Newman 2009). It is important that the NDIA builds flexibility in the language it uses for diverse groups and communities of participants across Australia.

As well as a review of broader policy and system arrangements, we encourage:

  • NDIA to continue to find ways in which the language of recovery and mental health can be adopted in official communications, information and resources, and to seek the involvement of participants with lived experience of psychosocial disability to assist them in this endeavour;

  • NDIA to continue to offer leadership on mental health in the Scheme and to retain a specific focus in this area until there is greater clarity on assessment of eligibility, the development of reference packages is completed and the issues around the capability of planners are resolved; and

  • NDIA, DSS and Department of Health to pay serious attention to the place of early intervention interventions aimed at building capacity for participants early in episode or early in experience of mental illness, and to raise this matter through the COAG process to ensure that there is funded provision made for early intervention either within the NDIS or through another government portfolio.

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References

Clarke, J. and Newman, J. (2009). Elusive publics: knowledge, power and public service reform. In S. Gerwirtz, P. Mahony, I. Hextall, A. Cribb (Eds), Changing teacher professionalism: International trends, challenges and ways forward. Routledge. UK

Diminic, S. et al (2017). The economic value of informal mental health caring in Australia: technical report. Report commissioned by Mind and prepared by the School of Public Health. University of

Queensland. Brisbane

Hayes, L. (2016). Effective evidence-based psychosocial interventions suitable for early intervention in the NDIS: promoting psychosocial functioning and recovery. Report commissioned by Mind and prepared by the Centre for Mental Health. Melbourne University. Melbourne

Meagher, J. and Naughtin, G. (2014). Issues paper: implementing the NDIS for people with disabilities related to mental health issues. Paper prepared for the Independent Advisory Council to the NDIA

Board. Canberra

MHA (2016). The implementation and operation of the psychiatric disability elements of the National Disability Insurance Scheme: a recommended set of approaches. Prepared by David McGrath Consulting for MHA. Canberra

NDIA (2016). Quarterly Report to COAG, 30 June 2016. National Disability Insurance Scheme. Canberra

NDIA (2017). Quarterly Report to COAG, 31 March 2017. National Disability Insurance Scheme.

Canberra

Nicholas, A. et al (2014). Mental health and the NDIS: a literature review. Commissioned by Mind and prepared by the Centre for Mental Health. Melbourne University. Melbourne

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