Submission 67 — Orygen, The National Centre of Excellence in Youth Mental Health — The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition

Submission

Joint Standing Committee on the NDIS: Provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition

Orygen, The National Centre of Excellence in Youth Mental Health (Orygen) welcomes the opportunity to provide a submission to the Joint Standing Committee on the NDIS review into the provision of services for people with psychosocial disabilities related to a mental health condition.

Orygen is the world’s leading research and knowledge translation organisation focusing on mental ill health in young people. At Orygen, our leadership and staff work to deliver cutting-edge research, policy development, innovative clinical services, and evidence-based training and education to ensure that there is continuous improvement in the treatments and care provided to young people experiencing mental ill-health.

This submission discusses n the impact and implications of the NDIS where relevant to young people (12-25 years) experiencing mental ill-health. Orygen would like to recognise the opportunities and challenges already identified through NDIS consultations with the mental health sector, and from the lessons learned in the trial sites. These include:

• The large numbers of people who will require community mental health services but who will fall out of the scope of the NDIS Individually Funded Packages (IFPs): currently expected to service 64,000 Australians with a psychosocial disability at full implementation.1

• The ongoing lack of clarity on the eligibility criteria for the NDIS as it relates to individuals experiencing a psychosocial disability and the difficulties applying current NDIS language such

  as ‘permanent’ and ‘impairment’ to determine eligibility. Particularly for individuals

experiencing fluctuating mental ill-health and where there is an expectation of clinical recovery.1,2

• The experience at NDIS trial sites where many people with mental health conditions found it initially difficult to understand and navigate the NDIS, suggesting the need for further outreach, advocacy and support.3

1 Mental Health Australia (2017) Submission Joint Standing Committee on the NDIS – Provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition. 2 Independent Advisory Council (2014) Advice on implementing the NDIS for people with mental illness, https://www.ndis.gov.au/about-us/governance/IAC/iac-advice-mental-health. 3 Mental Health Coordinating Council (2016) Navigating the NDIS: Lessons learned through the Hunter Trial, http://mhcc.org.au/media/85852/ndis_lessons_final_200117.pdf.

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Young people in Australia experiencing severe/complex mental ill-health In 2016 the resident population of young people in Australia aged 12-25 years was approximately 4.37 million.4 One in four young people will have a mental disorder, of which an estimated 17 per cent will

experience  severe  impairment.5  Utilising  these  statistics and what we know from  recent

epidemiological research Orygen estimates that upwards of 200,000 young people across Australia are experiencing a severe mental ill-health. This is three times the number of individuals with a psychosocial disability (across all ages) who are expected to receive IFPs through the NDIS.

We also know from studies on the demographics and clinical characteristics of young people seeking help at youth mental health services during 2013-14 that around 11,000 were experiencing recurrent or chronic mental ill-health6, while 16,337 young people aged 16-24 years with a primary psychological/psychiatric condition received the disability support pension in 2013.7 Youth mental health care principles, practices and NDIS eligibility criteria Evidence-based youth mental health service models focus on early intervention in onset, and in stage, of mental ill-health. They are also centred on the promotion of recovery and a return to functioning.8

As described by the Independent Advisory Council (IAC) in their advice on implementing the NDIS for people with mental health issues, it will be difficult for young people with a psychiatric disability or condition to enter the NDIS (via the IFPs) because most of these young people will not receive a diagnosis of a permanent disability.9 Even for young people experiencing severe and functionally disabling mental ill-health, current NDIS eligibility criteria would exclude access on the basis that it would not be not possible (or clinically advisable) to diagnose the illness as a ‘permanent’ condition. It is therefore problematic that this term is used to define eligibility for the NDIS (Committee Terms of Reference 1.a).

Determining eligibility for the NDIS through the production of evidence from a clinician or service provider could also be problematic for this age group. Young people are reluctant to present to primary care or access mental health services10, although those with severe experiences of mental ill health appear more likely to use a mental health service (51 per cent) than those with mild-moderate conditions (18 per cent).5

The introduction and roll-out of headspace centres nationally, now provides many young people in Australia with an appropriate, accessible and acceptable entry point into mental health care. However, these services are designed and resourced to respond to mild to moderate presentations of mental ill-health. Even among those young people who do seek professional help, many may be reluctant to describe their condition as ‘permanent’ or ‘disabling’.

4 ABS (2016) 3101.0 - Australian Demographic Statistics Table, 2016, Table 8. 5 ABS (2007) 4840.0.55.001 - Mental Health of Young People. 6 Purcell R, Jorm AF, Hickie IB, Yung AR, Pantelis C, Amminger GP, et al.(2015) Demographic and clinical characteristics of young people seeking help at youth mental health services: baseline findings of the Transitions Study. Early Interv Psychiatry. 9(6):487-97. 7 Services DoS. Characteristics of disability support pension recipients. Canberra: Australian Government; 2013. 8 Stavely, H., Hughes, F., Pennell, K., McGorry, P. & Purcell, R. (2013) EPPIC Model and Service Implementation Guide, Orygen Youth Health Research Centre, Melbourne. 9 Independent Advisory Council (2014) ibid. 10 Rickwood, D., Deane, F. & Wilson, C. (2007) When and how do young people seek professional help for mental health problems. The Medical Journal of Australia. 187(7):S35-S39. 2

Orygen recommends:

1. Clarifying eligibility for the NDIS as it relates to psychosocial disabilities; and
2. Providing assertive outreach and assistance in service navigation particularly to identify and support young people who are eligible for the NDIS but may not make contact with services (Committee Terms of Reference 1.g)

Information, Linkages and Capacity Building Framework

Given young people experiencing mental ill-health will mostly likely encounter difficulties accessing the IFPs, the role of the Information, Linkages and Capacity Building (ILC) Framework and associated funding will be of particular importance (Committee Terms of Reference 1.d). Current targets are for this platform to reach 4 million people and 800,000 primary carers (across all disabilities)11. A pilot of the ILC is about to commence in the ACT, however the current ILC Commissioning Framework (as at November 2016) does not include (among other things):

• specific guidance on psychosocial disabilities or a ratio/formula of funding to be allocated to activities which focus on this group; or

• detail on the governance arrangements or how the activities will connect with (and not duplicate) broader community mental health services.

In designing and implementing the ILC Framework activities (such as community and individual awareness raising and capacity building and facilitating linkages and referrals into community-based mental health supports) particular consideration should be given to the addressing the needs of young people. This would require the direct involvement of education settings, employment providers, as well as young people and their families. These activities will also need to identify and utilise technology and other systems that young people are engaged in.

Orygen recommends:

1. That a commensurate proportion of resources commissioned through the ILC Framework are provided to support individuals experiencing psychosocial disabilities, in particular young people and their families who are even less likely to be eligible for the IFPs.

2. Activities delivered through the ILC Framework must be co-designed, implemented and evaluated in partnership with people and their families experiencing psychosocial disabilities, to ensure the needs of this group are included.

Role of headspace, state/territory mental health services and PHNs Around one in four young people on their first presentation to headspace centres are assessed on the Social and Occupational Functioning Assessment Scale (SOFAS) as experiencing a serious impairment in functioning and 1.9 per cent experience an inability to function in almost all areas.12

As identified by the IAC, headspace and other early intervention services for young people experiencing mental ill-health will play a key role in determining the future demand for NDIS programs. This includes the provision of evidence-based interventions for mental ill-health which will ensure the illness does not become permanently disabling. It noted “stronger investment in such

11 Mental Health Coordinating Council (2016) ibid. 12 Hilferty, F., et.al. (2015). Is headspace making a difference to young people’s lives? Final Report of the independent evaluation of the headspace program. (SPRC Report 08/2015). Sydney: Social Policy Research Centre, UNSW Australia. 3

services will reduce demand for National Disability Insurance Agency (NDIA) services over the medium and longer and will be a factor in Scheme financial sustainability.”13

There has been increased service demand experienced by headspace centres14 including from young people with more severe and complex experiences of mental ill-health. As headspace is currently designed for young people with mild to moderate mental ill-health this group remains at risk falling through the gaps in service platforms (including the NDIS) rather than accessing evidence-based care as early as possible. Stronger investment in these services, as recommended by the IAC, should be directed to enhance the response to this group. Priority should be given to scaling-up services developed and delivered by Primary Health Networks (PHNs) for young people with severe mental illness, where evidence emerges for their efficacy. This includes existing evidence-based models such as the youth early psychosis program.

The PHNs will also have a key role working with and supporting the NDIA to assess demand for services and facilitate pathways through the NDIS platforms, youth mental health primary care (headspace) and state and territory youth mental health services (Committee Terms of Reference 1.e). For young people experiencing severe and complex mental ill-health, PHNs will need to assertively identify any existing or emerging gaps in care for this vulnerable and often ‘missing’ group and present the case to governments for additional funding, resources and service coordination.

Orygen recommends:

1. Continued and increased investment by governments in youth mental health services such as headspace, youth early psychosis program and other interventions for young people

experiencing severe and complex mental ill-health with a focus on increasing access to care and tracking service utilisation.

2. Prioritising improvements in service coordination between the NDIS, primary care and state and territory youth mental health systems with a focus on reducing and preventing duplication of responses.

3. That the PHNs assume a key role in working with the NDIA, NDIS service planners and the commissioners of the ILC Framework to identify existing or emerging gaps in care for young people with severe mental ill-health and advocate for more resources where required.

Further information For further information and follow up relating to this submission, please contact:

Kerryn Pennell

Director, Strategy and Development

Orygen, The National Centre of Excellence in Youth Mental Health

13 Independent Advisory Council (2014) (ibid.) 14 Rickwood, D. (2015) The services provided to young people through the headspace centres across Australia.

The Medical Journal of Australia, 202(10):533-536

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