NDIA Accountability Project

Submission 29 — Neami National — The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition

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Submission to the Joint Standing Committee on the

NDIS

The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition

Arthur Papakotsias

24 February 2017

neaminational.org.au

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Neami National

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4‐8 Water Road

Preston Vic 3072

p 03 8691 5300 f 03 8678 1106 admin@neaminational.org.au

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Background to Neami National

Neami National is a specialist community mental health organization with 30 years’ experience. We deliver a broad range of recovery oriented programs for people living in the community with a serious mental illness through a number of Commonwealth and State funded programs across

Queensland, New South Wales, South Australia, Western Australia and Victoria. In all, Neami

provides face to face support from 53 office locations across the five States.

Neami works with people across the full spectrum of need and is particularly committed to those who exhibit the most complex needs, including people who have experienced long periods of hospitalization and have been assessed as requiring extensive support to develop life skills and embark on a recovery journey. Over 8,000 people are supported each year through a range of services encompassing community‐based support, sub‐acute services, residential rehabilitation support, homelessness support and service coordination services. All our services are actively integrated with public clinical Mental Health Services.

Neami has experience of NDIS in three trial sites ‐ Hunter, Barwon and Perth Hills – and in the current roll‐out area of North East Metropolitan Melbourne.

Response to the terms of reference for the inquiry

a) The eligibility criteria for the NDIS for people with a psychosocial disability

  1. Our experience is that a broad range of people with psychosocial needs are deemed eligible and are gaining plans.

  2. Eligibility assumes people will identify a need and seek to engage with the NDIS to receive services. With 30 years’ experience Neami understands there is a cohort of people with a psychosocial disability/need for service (people who are clearly eligible) but who are reluctant to engage with services and are unlikely to seek or receive services through the scheme without assertive outreach. Of the 8000 consumers that Neami works with nationally, we estimate in excess of 20% would be in this cohort that would not have engaged in support services without assertive outreach and place based engagement services. We have developed expertise and approaches in engaging with and supporting this group of people with high and complex needs, that otherwise would not receive support in the community thus placing demands on higher acuity services – acute hospitals, justice system.

Recommendation: Expertise within the current service system should be harnessed to ensure those eligible for the NDIS can access and use their plans to their full potential.

b) The transition to the NDIS of all current long and short term mental health Commonwealth Government funded services, including the Personal Helpers and Mentors Services (PHaMs) and Partners in Recovery (PIR) programs, D2D Living Programs, and in particular; i. whether these services will continue to be provided for people deemed ineligible for the NDIS

  1. NDIS was not designed to meet the full spectrum of need experienced by people with mental illness.

  2. There is a large demand for current long and short term mental health funded programs that complement NDIS services. NDIS will not provide for many of current/future users of these services (who do not have permanent psychosocial disability), meaning that they will not have access to required supports.

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  1. PIR does valuable work to enable individuals to access required services within a complex system of health and social supports, but also builds system capacity through cross‐sector collaboration. A functional NDIS requires strong cross‐sector collaboration. Maintaining an effective system that works across sectors to meet people’s complex needs will require ongoing attention and funding. This function is allocated to ILC, however adequate time and funding is needed to effectively deliver on this function. Inadequate funding will likely result in erosion of cross‐sector collaborations, with potential to undermine the scheme leading to poor consumer outcomes.

Recommendations:  That funding of existing services be maintained to meet the needs of people ineligible for NDIS.  That funding be maintained through PIR in transition, with careful review of uptake of this function by ILC/PHNs prior to any change in funding.

c) The transition of the NDIS of all current long and short term mental health state and territory government funded services, and in particular; i. whether these services will continue to be provided for people deemed ineligible for the NDIS.

  1. The NDIS was not designed to meet the full spectrum of need experienced by people with mental illness. Decisions by State Governments to either continue funding services across spectrum of need or cash out state funded services in their entirety will result in wide variation in access to services for people with mental illness and psychosocial disability across Australia. This will have greatest impact for those unable to take up the voluntary services offered through the NDIS due to a range of factors (for example; negative past experience of services, acute symptoms, homeless or with transient housing, co‐ occurring substance use issues, impaired decision making), and for those ineligible for NDIS; those with psychosocial needs but not significant psychosocial disability that is likely to be permanent.

  2. Neami has a strong presence in Victoria where the State is cashing out most community mental health services. This means community mental health support will cease to be funded and provided. Community mental health support provides a range of, rehabilitation and recovery services that keep people well, prevent relapse, support early discharge from more acute services, and bolster supportive community networks that sustain mental health. These services are provided to people with psychosocial disability and to those experiencing/recovering from more acute or fluctuating episodes of mental illness. Removal of these services in their entirety is likely to increase pressure on acute and clinical mental health services by increasing demand and slowing throughput, placing an already burdened system under further pressure. Outcomes are likely to include poorer health, social and vocational outcomes, and increased crisis episodes/events, for this group of people who will have no access to funded community mental health support.

  3. States, such as NSW, where the decision making has been less binary, will continue to provide a flexible range of supports to meet the psychosocial needs of people with short‐ term and fluctuating mental illness, ineligible for NDIS. The likely outcome will be reduced pressure on the acute service system, reduced inappropriate/ineligible referrals to NDIS, and improved health, social and vocational outcomes for this group of people who are ineligible for NDIS.

Recommendation: We believe continued funding of community mental health supports for those with short to medium term/fluctuating psychosocial needs will be a positive investment by State Governments, in that it will both improve outcomes for individuals, and contain demand on more acute state‐funded mental health services.

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d) The scope and level of funding for mental health services under the Information, linkages and Capacity building framework;

  1. The capacity of this program to deliver on the stated ILC deliverables that are critical to overall NDIS functioning remains unclear. The competing demand of scheme roll‐out and need to enrol large numbers into the NDIS over the next three years will limit the scope of the ILC during this time. The current level of funding relegates this linkage and capacity building component of the NDIS, undermining what was conceived as essential to the architecture of the overall scheme.

Recommendation: ILC needs to be well funded to ensure a strong and coordinated network of services and supports is available to underpin and sustain the scheme.

e) The planning process for people with a psychosocial disability, and the role of primary health networks in that process.

  1. Consumer feedback and our observations across several jurisdictions indicates challenges within the current NDIS planning process. We understand these as having two central causes;

A) Within the NDIS, planning is comprehended as relatively simple process of information gathering and interpretation, with needs converted into actions through a plan that will last 12 months. This works for some but not all people with a psychosocial disability. For some people planning is a process, dependent on an interactive relationship developed over time, with needs revealed through this relationship, and required actions negotiated between the consumer and planner over time. This form of planning is best undertaken within the support coordination process of the NDIS, with the plan developed in an iterative manner. The current NDIS process does not accommodate this more iterative approach to planning that has been a strength of community provided mental health services, in particular in meeting the needs of people who are disengaged or marginalised.

B) Required system efficiencies are driving processes that undermine the strength of effective planning. For example, in North East Metropolitan Melbourne the majority of first plans are being undertaken over the phone. Consumers report being taken off‐guard by phone calls from LACs and not fully understanding the assessment process. Some consumers have reported they were not aware that the phone call represented the full NDIS assessment/planning process. This leads to them not feeling they can express their needs effectively and feeling pressured to agree on plans they do not fully understand.

Rapid planning by LACs without extensive experience in supporting people with psychosocial disability results in plans that attempt to replicate status quo in service provision without fully understanding the complexity of that service.

  1. Consumers without English as their first language describe difficulties in participating in planning and in getting plans that they can fully implement on account of their language needs.

  2. Our experience across 4 NDIS regions in 3 states reveals wide variation in plans for people we understand to have similar levels of need.

  3. Primary health networks are well placed to understand the psychosocial needs of their communities. Ongoing data collection will build increasing understanding of need along

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the stepped model of care. Currently allocated resources limit PHN capacity to deliver across the full spectrum of identified need.

Recommendations:  Developing a more iterative planning process for the group of people for whom single‐ event planning is challenging. This may involve short term plans for high level support coordination, with the goal of developing a longer term plan well aligned with the person’s complex needs.  There will be long‐term efficiencies in ensuring well‐resourced planners – skilled in understanding the needs of people with psychosocial disability, and with adequate time to conduct most assessments face‐to‐face.  That people from culturally and linguistically diverse backgrounds can fully participate in planning and can fully implement developed plans through adequate provision of interpreter funding throughout the process.  Variation in planning across regions needs to be explored with efforts to identify areas of best/better practice and supporting dissemination of this practice more broadly across Australia.

f) Whether spending on services for people with a psychosocial disability is in line with projections

No response.

g) The role and extent of outreach services to identify potential NDIS participants with a psychosocial disability

  1. Outreach services play an important role in reaching out to people about their rights and options to access support for their mental illness and psychosocial needs. This includes people who may be unsure of eligibility, or reluctant or unable to access services for a range of reasons (for example negative past experiences, fear, stigma, symptom related distress or paranoia, disorganisation, transient housing, seeking to manage independently). With 30 years’ experience in reaching out to this group of people we have developed an approach that is effective in engaging and linking this hard to reach population. We have demonstrated that assertive outreach does enable people to connect with required supports and work toward their dreams and aspirations – a home, friends, and a meaningful role in their community. It is likely that a group of people who are eligible will not access services through NDIS, or will not make full use of allocated plans, without active outreach. For some people short term outreach will be effective, while others will require continuing or intermittent outreach, dependent on their circumstances and mental state.

  2. States cashing out all community mental health support will not have access to outreach to bring people into the scheme, to optimise package use, or to reconnect them if they withdraw from contact. The burden of outreach in these states will shift to carers, GPs, primary health professionals and police, who may not have the capacity or skills to support engagement in the NDIS.

Recommendation:  Funded outreach available external to NDIS, to support those who are eligible to negotiate a first plan. (Acknowledging that some people with mental illness/psychosocial disability may have difficulty negotiating the system to exercise choice and control)  Provision of adequate high level support coordination within NDIS for those who require more active support to engage with and remain engaged in planned supports.

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h) The provision and continuation of service for NDIS participants in receipt of forensic disability services

  1. Mental health community services have developed expertise in working collaboratively with the forensic system to support people in transition from forensic settings to the community. This requires extended in‐reach with consumers while they remain in prison/secure‐care in preparation for discharge. The voluntary and recovery focused service provided by the community mental health sector, is critical in sustaining safe and effective discharge, as an adjunct to strong clinical mental health care. This group of consumers will not be eligible to receive NDIS services while they are in prison/secure‐ care. To maintain safe and successful discharge, and to reduce risk of reoffending in the short term, provision of these critical in‐reach services requires adequate funding.

Recommendation: A more flexible NDIS, that can provide in‐reach into prison/secure‐care, is well placed to effectively meet the needs of this small number of people with complex needs.

i) Related matters: Delivering mental health services in support of recovery

  1. The community mental health sector has spent the last 20 years developing a practice approach consistent with contemporary understandings of recovery oriented support. This includes use of language focused on strengths and hope rather than deficit and disability. While psychosocial disability and recovery are not incompatible concepts, the language used and the focus on disability within the NDIS, has been experienced by consumers, carers and sector workers as unfamiliar, confusing and/or jarring. The updated factsheet (Psychosocial disability, recovery and the NDIS, Nov 2016) provides useful guidance on how these concepts can be partnered, and less directive plans as the scheme matures, provide greater opportunity for consumers to choose services they need and for providers to deliver these more flexibility in the context of fluctuating need.

Recommendation: The NDIS, service providers, consumers and carers require opportunities to negotiate together how important concepts such as disability and recovery are understood and addressed within the parameters of the NDIS.

  1. Emphasising what is to be done in plans, has been interpreted in the sector as devaluing or dismissing how this is to be done. Consumers remind us that how services are delivered underpins the quality of support and recovery‐focused engagement depends more on how services are delivered than on what is provided. This does not preclude the importance of service choice and control, and the sector will no doubt learn much as people assume real choice and control over the supports they request and receive. However it does allude to investment in identity‐enhancing relationships as the foundation for service provision that will enable people to have ongoing choice and control in their lives beyond mental health services. This investment requires skilled staff provided with continuing opportunities for reflection and professional development. Maintenance of a workforce able to deliver on identity‐enhancing relationships requires investment in staff support and professional development which remains unfunded in the NDIS.

Recommendation: A funding model that acknowledges the ongoing need for service delivery staff to build the knowledge, skills and attitudes that best meet the needs of people with psychosocial disability, ensuring they deliver quality care and can manage risk and complexity.

  1. Neami has committed to collecting needs and outcome data over the past 20 years allowing service improvement that is based on a comprehensive understanding of consumer need and the outcomes of services provided. We use a suite of outcome measurements (e.g. Camberwell Assessment of Need, BASIS 32, and K‐10) that tell us

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that over the first 12‐18 months of Neami services, people’s unmet needs and levels of distress decrease significantly. Neami offers a range of evidence‐based interventions underpinned by the Collaborative Recovery Model (CRM), developed by the University of Wollongong, and the Optimal Health Program (OHP), developed by St Vincent’s Hospital, Melbourne. These support recovery, address physical health needs, and facilitate people’s participation in their communities, employment and education. This comprehensive outcome data in combination with qualitative data from consumers and carers have built an evidence base that has strengthened services and ensured they have become more closely aligned with consumer need and choice.

With NDIS we are moving from a system of care and suite of services that we know works, to the unknown. The evidence of effectiveness of an NDIS model of care remains unclear. The intermediate evaluation from the NDIS trial sites indicate mixed levels of success and satisfaction in relation to key NDIS outcomes: consumer choice, control, participation, wellbeing and aspirations (Mavromaras, Moskos & Mahuteau, 2016). Of particular concern is the lack of comprehensive evaluation strategy within the NDIS.

It will be important to capture positive outcomes, along with the experiences of those for whom the NDIS does not deliver improved quality of life for whatever reason – issues with eligibility, access, planning, coordination support, type of support, support flexibility, workforce/service availability – so this understanding can be used to inform future iterations of the scheme.

Recommendation: Building a comprehensive method to evaluate outcomes into the Scheme in order to capture effectiveness of the Scheme in meeting its stated goals and the longitudinal impact of the NDIS on people’s lives.

Neami would be pleased to attend the Committee in person to speak to the issues outlined in this document. In addition we would be pleased to facilitate attendance by one or more people with a psychosocial disability to speak directly about their experience of the NDIS.

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References

Mavromaras, Moskos & Mahuteau (2016). Evaluation of the NDIS: Intermediate report. Flinders

University,

https://www.dss.gov.au/sites/default/files/documents/11_2016/final_intermediate_report_wcag_c ompliant_24_nov_2016.pdf

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