The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition
Submission by Wellways Australia to the Joint Standing Committee on the NDIS February 2017
Wellways Australia, incorporating Australian HealthCall Group, is a member‐based, not‐for‐profit organisation that works with individuals and families whose lives are affected by mental illness and psychosocial disability. Wellways was established in 1978 by families who wanted to improve the services and information available to people affected by mental illness. Today Wellways is a leading national mental health and disability support organisation with services located across Queensland,
Australian Capital Territory, New South Wales, Victoria and Tasmania. Our services span mental
health, disability and community care, and currently reach more than 7,900 people each year.
Wellways’ submission to the Committee is informed by wider consultation with Wellways advocacy members, consumers and carers and staff. Our submission draws on our experience as a provider of Partners in Recovery (PIR), Personal Helpers and Mentors (PHaMs) and Family Services. Wellways has experience of delivery of NDIS services in the trial sites and current roll out areas within Victoria, Tasmania and ACT.
Wellways thanks the Joint Standing Committee for this important opportunity to have input on the future direction of the NDIS and the provision of services to people with a psychosocial disability. Wellways would be happy to attend the Committee to speak to the issues outlined in this document, and to further facilitate the input of the people and families affected by psychosocial disability.
Wellways’ response to the terms of reference
(a) The eligibility criteria for the NDIS for people with a psychosocial disability
Given that Mental Health Australia estimate up to 229,000 people with severe mental illness will not be eligible for support under NDIS, Wellways understands stringent eligibility criteria are needed to ensure equitable access for those who need it most. While we understand NDIS guidelines do not require that people with psychosocial disability must have a “permanent disability” in order to be eligible for the scheme, Wellways is concerned that the current assessment process is inadequate to properly assess the eligibility and needs of people with psychosocial disabilities. Our experience in the trial sites is that the assessment and planning process is frequently undertaken by planners with little or no experience with mental health and psychosocial disability; and that the assessment process does not always effectively recognise the level of need for people experiencing or recovering from more acute or fluctuating episodes of mental illness. In our experience, this has resulted in some people being assessed as having lower levels of need and allocated much lower levels of support than they previously received. Given the economic pressures inherent in such a scheme, we are concerned that this may result in:
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‐ Inequitable access for people with psychosocial disabilities within the scheme as a whole, and within the quantum of places allocated to this cohort ‐ Inadequate allocation of resources to people within their first plans, increasing the potential for relapse
Recommendation: Wellways recommends that assessment of people with psychosocial disability and allocation of plans is undertaken either by ‐ or in consultation with – skilled mental health professionals.
(b) The transition to the NDIS of all current long and short term mental health Commonwealth funded services, including the Personal Helpers and Mentors services (PHaMs) and Partners in Recovery (PIR) programs, and in particular; whether these services will continue to be provided for people deemed ineligible for the NDIS
The Partners in Recovery (PIR) program provides specialised support to people and families who have multiple and complex needs and experience significant barriers to accessing services. PIR was designed to meet the needs of people who were not well‐served by a traditional service system, and has proven to be one of the most successful multi‐sector mental health service models devised in Australia. Published evidence points to positive outcomes for participants as well as a reduction in dependence on the service system.
‐ A study conducted by Brisbane North Primary Health Network found that “90% of the more than 1500 clients in the program reported experiencing a reduction in unmet need, and approximately 85% no longer reported problems with connecting to relevant services (Cheverton & Janamian, 2016). ‐ Wellways’ evaluation of our PIR programs found that participants experienced statistically significant improvement in 20 domains of life on the Camberwell Assessment of Need (Muir et.al., 2016). Wellways PIR participants are supported to transition from the program to natural and community supports, with the average length of service provision nine months.
Wellways recently conducted an internal review of PIR programs in preparation for transition to the NDIS and found that the majority of participants experienced significant barriers to service access prior to PIR, including:
‐ People who had never accessed services before. and presented with significant functional disability and isolation as a result ‐ High levels of carer burden due to the family frequently being the only consistent support ‐ Frequent examples of being barred from mainstream supports such as GP or Home Care services due to behavioural issues ‐ Frequent examples of being deemed ineligible for community mental health services due to not accepting a mental health diagnosis and refusing to engage in planning
Based on our experience, Wellways estimates that 50% of our current PIR participants will have significant difficulty in entering into and engaging with the NDIS, and are therefore likely to miss out on NDIS support as well as losing their current effective support services.
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The effectiveness of PIR is largely due to its capacity to provide flexible and assertive outreach to engage people with a range of supports; brokerage funding to ensure urgent needs are addressed swiftly; and a whole‐of‐family approach to support. Funding for NDIS support coordination is not sufficient to replace a role such as PIR, largely as the funding is significantly lower than current funding for PIR. This means this specialised service will no longer be provided within the NDIS and will essentially be lost within the mental health system. This also means a loss of current skilled staff with the necessary experience and skills to work with this cohort. Wellways is concerned that Local Area Coordinators (LACs) and Information, Linkages & Capacity Building (ILC) programs, which aim to build capacity and support engagement with the NDIS, will not have the required capacity or capability to engage with and meet the needs of participants and families. This will lead to significant disadvantage for individuals and families affected by mental illness who have difficulties engaging with service support.
Wellways is likewise concerned about the potential impact of the transition of Personal Helpers and Mentors (PHaMs) programs on people with psychosocial disabilities who have complex needs and difficulties in engaging with services. Like PIR, PHaMs was designed to be highly flexible and reduce barriers to access. This included a focus on employing skilled peer workers. Wellways’ 2016 external evaluation of our PHaMs service showed:
- High levels of complexity ‐ 35% of the 428 people in our program had multiple psychiatric diagnoses and 25% experienced multiple disabilities in addition to psychosocial disability
‐ Effective outcomes – PHaMs participants experienced statistically significant improvements in recovery (Muir et.al., 2016)
Wellways further notes another flexible element of the PHaMs program is that it does not specify an older age limit, unlike the NDIS. Therefore, we can anticipate that a number of PHaMs participants are likely to be excluded from the NDIS due to age. Given that there may not be state or federal funding for this group of people once current programs are cashed out to the NDIS, some flexibility may need to be considered.
Recommendations: Wellways recommends that the federal government continues to fund effective, low‐barrier programs such as PIR and PHaMs alongside the NDIS; and that consideration is given to the potential of these services to engage people with the greatest need for the NDIS. Wellways further recommends that consideration is given to the cohort of people who are older than 65 and who are likely to lose community mental health support services as a result of program funding being cashed out to the NDIS.
(c) The transition to the NDIS for all current long and short term mental health state and territory government funded services, and in particular; whether these services will continue to be provided for people deemed ineligible for the NDIS
In their submission to this Committee, Mental Health Australia estimate that up to 290,000 people each year require community mental health services. They further estimate that 153,600 people have carers who will require some level of support. Given the current modelling for NDIS describes a target of 57,000, and that carer support is not in scope for the NDIS, this leaves a large group of people who will not be deemed eligible for the NDIS but will still require some level of community‐
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based mental health support. With the transition of state and territory funded services into the NDIS, it is unclear who will hold responsibility for this group.
Community mental health support provides a range of rehabilitation and recovery services that are distinct from those services delivered by clinical services and under the NDIS. Community mental health services help people recover and stay well through: preventing relapse; supported discharge from acute services; peer support; building engagement with mainstream services; support for families and carers; and activating informal networks of support that sustain mental health recovery over time. Wellways understands that the NDIS was not designed to meet the full spectrum of need experienced by people with mental illness. However, decisions by State Governments to either continue funding services at a lower level than previously or cash out state funded services in their entirety are likely to result in significant impact, including:
‐ Inequities in access to services for people with mental illness and psychosocial disability. For example, Victoria is cashing out most community mental health services. This means community mental health support will largely cease to be funded. ‐ Increased pressure on the acute and clinical mental health services system as a result of increasing demand. ‐ Poorer health, social and vocational outcomes, and increased crisis episodes/events, for those people who are not eligible for the NDIS and have no or limited access to funded community mental health supports.
In addition to the likely impacts of PIR and PHaMs programs being cashed out to the NDIS, Wellways sees two urgent issues that must be considered in the transition of state and federally funded programs:
Family Support
Families and carers of people with psychosocial disability are not automatically entitled to NDIS support and are at risk of receiving limited to no support through the scheme. Despite there being some potential for family support to be included within NDIS plans, Wellways have yet to see a single plan in our NDIS services that has included this.
It is essential that families and carers receive social, emotional, financial and practical supports to sustain their caring role and for their own social and emotional wellbeing. Evidence shows that families and carers of people with psychosocial disability experience high rates of grief, trauma, stress, depression, anxiety and poor physical health. Family members and carers also experience stigma, discrimination and social isolation resulting in the breakdown of relationships and disconnection from family, friends and community. Families and carers must be able to access support in their own right, regardless of whether their family member or loved one is accessing services.
Wellways understands that current proposed reforms to DSS funding are intended to address the support needs of carers, but we would caution that this funding may not replicate current service levels and will not address the needs of carers within the NDIS.
Peer Support
Accessing peer support services is essential to recovery. Currently peer support is not available as a dedicated support item under the NDIS, and generic support items are not paid at a sufficient level to enable organisations to employ and train skilled peer specialists. This emerging discipline has
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been well‐supported in community mental health services, particularly in programs like PHaMs, and is at risk of disappearing as an effective support option for people with psychosocial disabilities.
Recommendations: Wellways recommends that states and territories continue to fund recovery‐ focussed community mental health services at an appropriate level to ensure those people who are ineligible for the NDIS, including carers, are effectively supported. These services should focus on support for wellbeing; reconnection to community; reactivating meaningful activities; finding stable housing; peer support; employment and physical health treatment. Wellways further recommends that peer support services be included in the NDIS and funded at an appropriate level.
(d) The scope and level of funding for mental health services under the Information, Linkages and Capacity building framework
Wellways acknowledges the principles and direction outlined in the Information, Linkages and Capacity building framework, in particular the focus on community inclusion and the valuing of lived experience. However, the true capacity of the ILC to deliver on the intended deliverables remains unclear. In our experience, the Local Area Coordination function ‐ which receives the lion’s share of ILC funding – is struggling with the demands of rolling out the scheme roll‐out and have limited capacity to support people to link with mainstream services and their community. The current level of funding remaining in the ILC is minimal and unlikely to be adequate to support significant gaps such as carer support, peer support and community education and connection.
Recommendation: Wellways recommends that the scope and level of funding for mental health services under the Information, Linkages and Capacity Building framework be expanded to ensure an effective and coordinated network of services and supports is in place to sustain the NDIS.
e) The planning process for people with a psychosocial disability, and the role of primary health networks in that process
Wellways understands that the current NDIS planning process presents significant challenges for people affected by psychosocial disabilities. Our experience in the trial sites and the current roll‐out site in North Eastern Melbourne has raised the following issues:
‐ The planning process has frequently been conducted by practitioners with limited knowledge of the needs of people with psychosocial disabilities; and with limited capacity for flexible engagement in planning. For example, in North East Melbourne the majority of first plans are being conducted via phone interview. In our experience, this has directly disadvantaged people with complex needs and those from marginalised groups. ‐ The planning process has frequently excluded carers, families and advocates. 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.
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Wellways believes that the current combination of Local Area Coordination and Planning services into a single function is stretching resources too thinly; resulting in a focus on efficiencies rather than the most effective process to ensure people are able to combine NDIS plans with other specialist and mainstream supports in their community. Primary health networks may be well placed to play a role as they are funded to understand the psychosocial needs of their communities and experienced in the commissioning of PIR services. Current resource allocation and focus areas have limited PHN capacity to work with people with severe psychosocial disability, except for those involved in PIR. Wellways believes that existing resources within PHN and PIR programs could be employed to good effect to support the Local Area Coordination and planning processes.
Recommendation: Wellways recommends that the NDIS support the provision of a well‐resourced assessment and planning function that is skilled in understanding the needs of people with psychosocial disability, and has adequate resources to engage with people effectively and includes families, carers and advocates as required.
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
Wellways understands there is a cohort of people with a psychosocial disability who will be likely to be eligible for NDIS, but who are unlikely to seek or receive services through the scheme without assertive outreach. In our experience, people with complex needs are often most effectively engaged through assertive outreach and personalised approaches. Wellways estimate that over a quarter of the people we currently serve are likely to require assertive outreach to engage in the NDIS, based on the level of complexity in our current programs:
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35% of the 428 people in our PHaMs program in 2015‐16 had multiple psychiatric diagnoses and 25% experienced multiple disabilities in addition to psychosocial disability
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26% of the 1,434 people in our PIR program in 2015‐16 had multiple psychiatric diagnoses and 28% experienced multiple disabilities in addition to psychosocial disability
In our understanding, Local Area Coordination services do not have current capacity to provide this type of assertive outreach to people with complex psychosocial disabilities.
Wellways also sees outreach as critical in engaging with Aboriginal and Torres Strait Islander communities and Culturally and Linguistically Diverse (CALD) communities. Marginalised groups are less likely than the general population to use mental health services, and are more acutely unwell when they do. Working with people from diverse community backgrounds requires a flexible and open approach to understanding needs, genuine engagement with families and commitment to working in partnership with the cultural communities (Farnan, 2010)
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Recommendation: Wellways suggests that expertise within the current service system should be utilised to ensure people eligible for the NDIS can access the scheme and to support effective planning and service delivery to people with psychosocial disability.
h) The provision and continuation of service for NDIS participants in receipt of forensic disability services
No response.
i) Other matters No response.
References
Cheverton, J. & Janamian, T. (2016) The Partners in Recovery program: mental health commissioning using value co‐creation. Medical Journal of Australia, 204 (7 Suppl): S38
Farnan, S. (2010) Recovery principles for culturally and linguistically diverse communities. Master’s thesis completed with the support of Wellways Australia.
Muir, S., Meyer, D. & Thomas, N. (2016) Evaluation of outcomes for Wellways Australia – Recovery Star and Camberwell Assessment of Needs data analysis. Commissioned from Swinburne University of Technology by Wellways Australia.
Mental Health Australia (2016) The implementation and operation of the psychiatric disability elements of the National Disability Insurance Scheme: A recommended set of approaches. Technical paper prepared by David McGrath Consulting for Mental Health Australia.
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