NDIA Accountability Project

Submission 65 — VICSERV (Psychiatric Disability Services of Victoria) — The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition

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Submission on

The  provision  of  services under the NDIS  for people with

psychosocial disabilities related to a mental health condition

Contact details:

Debra Parnell, Interim Chief Executive Officer, VICSERV

Introduction

VICSERV is a membership-based organisation and the peak body representing community managed mental health services in Victoria.

The  services  provided by VICSERV members  include programs funded  through  the  Victorian

Government’s Mental Health Community Support Services (MHCSS), and many also receive funding through Commonwealth mental health programs. The National Disability Insurance Scheme (NDIS) will have a significant role to play for many people living with serious mental illness, their families and carers. VICSERV remains committed to the NDIS and the benefits it can bring to the lives of people living with a mental illness, and subsequently to their families and carers. However, as implementation of the NDIS is rolled out across our State, we are becoming increasingly concerned that the design and functionality of the NDIS does not appropriately align with the needs and requirements of people living with a mental illness. Throughout the trial process and now, during implementation of the scheme in Victoria, it is apparent

that the needs and requirements of people  living with a mental  illness have been a secondary

consideration in scheme’s design. We are concerned that, if the needs are not adequately considered and addressed prior to full roll out of the NDIS, benefits of the scheme for the mental health sector will be reduced. In developing our submission we have drawn on the experience and expertise of community mental health organisations and workers, conducting two face-to-face consultations and an online survey, involving a range of mental health stakeholders, some of which have experience implementing the scheme at different phases of its roll-out. Our submission provides detailed discussion of the key issues raised by community mental health organisations during the consultations, including practical examples and views shared by community mental health organisations experiencing first-hand the realities of the NDIS. We also endorse the submission of our national peak body, Community Mental Health Australia (CMHA), which is a coalition of the eight state and territory peak community mental health organisations. CMHA, through its state and territory bodies, has a direct link and contact to mental health organisations delivering services at the community level across Australia. We understand that the Committee may call for witnesses to attend proceedings to provide evidence. VICSERV would welcome the opportunity to attend, or to help coordinate participation by any of our member organisations. Summary of key issues

  1. The need to have a streamlined and more appropriate process for determining the eligibility of individuals with psychosocial disability

  2. The gap in service provision that will be created by the transferring of mental health funds from current State and Commonwealth programs to federally funded disability services, and

consequently the potential loss of psychosocial rehabilitation and the impact of this on consumers

  1. The level of funding being provided under the ILC framework and its limitations for meeting the needs of people with serious mental illness who are ineligible for NDIS supports, their families and carers

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  1. A consistent and appropriate planning and review process that acknowledges the particular needs of people with psychosocial disability, including the importance of pre-planning and engagement

  2. The need for NDIA planners and Local Area Coordinators to understand more fully psychosocial disability and mental illness and the recovery framework

  3. The current lack of a specific funding resource for assertive and active outreach to reach disengaged or hard-to-reach individuals including those from rural and remote areas and indigenous, CALD and homeless groups

  4. The structure of the NDIS pricing schedule which will not support a sustainable workforce with mental health skills and capabilities

  5. The lack of recognition of the importance of roles of families and carers; peer support workers in supporting individuals through their recovery process

Process for testing eligibility for access to the NDIS for people with psychosocial disability The process for assessing the eligibility of individuals with psychosocial disability should be streamlined and adjusted so that it is more appropriate for individuals with a serious mental illness. Currently, the process is found to be lengthy and confusing – with some consumers reluctant/unable to complete the application process. It has also been recognised that consumers need significant support and advocacy from support workers, carers and/or peer workers in order to complete the eligibility forms. This results in substantial unbillable hours for mental health organisations and stress for consumers and their carers. Further, the language used by the NDIA in its processes and materials for testing NDIS eligibility, and in particular the language of ‘permanency’ that underpins the scheme, has been identified as a barrier that has impacted on the access and participation for people with mental illness. In particular consumers have expressed that the language of permanency:

  • Is contrary to current evidence-based recovery practice and the episodic nature of mental illness which makes it very difficult for psychiatrists and GPs to formally state that a consumer has a permanent diagnosis/disability and functional impairment

  • Is contrary to the recovery orientation of service delivery and support which aims to directly reduce the likelihood of a disability developing

  • Is known to create high levels of stigma, distress and a loss of hope for consumers to say they have a permanent disability/impairment

  • Creates a particular barrier to younger people (under 30 years of age) and those with moderate mental health needs, who are likely to recover but may not be eligible for support under the NDIS. These issues continue to distress individuals and families and impacts on the level of participation in the scheme.

“My main concern is that clients just don’t understand the process, it is overwhelming for them and many will not apply for NDIS funding. For a large number of clients with mental health issues group based services are all they have known, they are comfortable with the current system that has been around forever and changing to the NDIS is just too difficult to comprehend.” “The move from a strengths-based /goal orientated approach to lack of functionality is obvious and already alienating some to the idea of NDIS packages of support.”

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NDIS funding and the gap in service provision for those ineligible There is significant concern associated with the gap in service provision that will be created with the transferring of funds from federally funded mental health programs, such as Partners in Recovery (PIR), Day to Day Living (D2DL) and Personal Helpers and Mentors (PhaMs), to the NDIS. A number of people currently receiving assistance from these programs will be ineligible for the NDIS. Further, in Victoria, through the bilateral agreement with the Commonwealth Government, the Victorian Government has committed the majority of its mental health services funds to the NDIS (redirected from the Mental Health Community Support Services funds), leaving the NDIS as the only option for most people with mental health issues who require psychosocial support in Victoria. VICSERV estimates that as many as 10,000 Victorians living with serious mental illness will be ineligible for the NDIS and are at risk of not receiving appropriate psychosocial rehabilitation services1. It is imperative that those people living with a mental illness who fall outside the scope of the NDIS still receive community-based mental health support, ensuring that their rehabilitation and support needs are met whether eligible or not. Ensuring continuity of care inside and outside of the NDIS will reduce demand within the system and improve financial sustainability for the Scheme in the longer-term.

Mental health and the Information, Linkages and Capacity (ILC) building framework There is no real benefit to mental health services from the ILC because the funding provided through the framework is so minimal – the ILC doesn’t have the capacity to provide for the scope of what existing services deliver, whilst also responding to the needs of people who won’t be eligible for the NDIS. This issue reconfirms our concerns that mental health continues to be a secondary consideration in the design and functionality of disability supports provided through the NDIS. Throughout the trial process and now, even during implementation of the NDIS in Victoria, the premise of the ILC is not being achieved. For example, Local Area Coordination (LAC) is funded under the ILC framework to connect people who are outside of the NDIS to informal supports, whilst also providing assistance with the planning process for those that are eligible. However, currently the efforts of the LAC’s in Victoria are focused almost entirely on moving in scope and new participants into the scheme to meet targets, creating a gap in meeting the needs of those ineligible for the NDIS.

The planning and engagement process for people with a psychosocial disability During our consultation, community mental health organisations reported how they, and the clients and carers they have worked with, have experienced the current planning and engagement process.

  1. Preplanning and engagement Through our consultations, mental health organisations have reported that consumers receive better outcomes when a support worker, advocate or peer worker have assisted them prior to attending their planning meetings, or plan review meetings. For example, PHaMs programs in Barwon were provided with extended State funding to assist those consumers to transition into the NDIS. Many consumers credited their PHaMs worker with getting them into the scheme, saying that without their worker organising the paperwork and giving them a

1 Based on modelling undertaken for the State Government PDRSS (Psychiatric Disability Rehabilitation Support Services) reforms: Deloitte Access Economics – PDRSS Demand Modelling Report, Oct 2013. 4

stronger voice during the planning stage, they doubt they could have secured eligibility or a funding package on their own. VICSERV has noted a direct relationship between how much time and resources is dedicated to preparing a client (including sourcing and compiling paperwork and reports) and how likely they are to be deemed eligible for a funding package. One service provider reported that this pre-engagement support was attributable to 20 hours of work per client, in addition to trying to meet their day-to day needs. An allocation of funds from the NDIA to facilitate entry into the NDIS and to support a participant through the initial planning phase would inevitably increase the engagement of individuals under the NDIS and the overall outcome for consumers.

“Many people with psychosocial disability benefit from a lengthy engagement period as they often struggle with anxiety, trust, low self-confidence, past history of trauma, paranoia etc. It is easier for them to reject engagement with services if staff are not funded to be able to persist.” “If a participant hasn’t worked with someone to understand the planning process they are often underprepared and unable to articulate their needs or current situation.” “I don’t believe that many clients will understand what services to ask for, many have difficulty planning their day let alone their life and what supports and services and who should provide them.” “For many it all looks TOO HARD and they opt out.”

  1. Planning  The planning process needs to be appropriate and sensitive to people with psychosocial disability The current system put in place to connect with consumers to commence the planning process has been found to be inadequate and stressful for consumers. For example, currently the NDIA attempts to engage with consumers via a maximum of three phone calls and a follow-up letter. However, service providers have reported that some of the people they work with are not comfortable speaking on telephones or answering calls from numbers they do not know. Some do not even own mobile phones or landlines. Phone calls as a means to facilitate engagement can cause significant distress for some individuals and will often result in disengagement. Whilst in transition, some service providers can still provide PHaMs, MHCSS or other staff to assist with supporting disengaged individuals, however when this funding ceases it is uncertain what will happen to those individuals. In addition, some service providers have reported that conducting engagement and planning via the phone limits the assessor’s ability to get a true understanding of an individual and their situation particularly given a large proportion of communication is non-verbal.
Non-verbal communication  is an  essential part  of  building rapport with people with a

psychosocial disability. This is especially true for people who experience symptoms such as depressive thoughts or paranoia. While using technology plays an important role in increasing access to services, a move away from face-to-face consultations will also mean a lack of rapport and an increase in the number of people who will disengage from services. Further, participants who are not currently engaged with mental health services may need even greater support to engage with the service.

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In order to be effective, the process should be consistent and acknowledge the particular needs “I don’tofunderstandpeople withhowpsychosocialthe client’s needsdisability.can be assessed accurately without a face to face meeting with them, how can a person’s needs be assessed without knowing that person. As workers the rapport that we build with the client determines the level of trust that they have in us and how much they will disclose to us about their personal circumstances and the struggles that they are facing which determines what supports we put in place for them.” “One of the main issues is that of trust. This can take a long time to establish and needs to be considered. Many people will not even make the effort and consequently be worse if no better off.”

“Some people with psychosocial disabilities may not engage in the assessment or planning process if there are no face to face consultations available.”

 Peer workers and carers should be involved in the planning process

The NDIS could enable more consideration to the support of carers and peer workers by better involving them in the planning process. A lack of insight is often a factor to consider for people with psychosocial disability and often a peer worker or carer’s involvement in the assessment and planning phases is beneficial to all parties.  NDIS Planners should have knowledge and experience with psychosocial disability and mental illness and the overarching recovery framework Individuals don’t always know what they can ask for or how to articulate their disability and it has been reported that NDIA planners do not have an adequate understanding of psychosocial disability and mental illness to support them through the planning process. If a planner understands the depths of a person’s disability and what is needed to support the individual, the package developed will suit them over a longer term. This reduces the need for a plan to be amended, thereby reducing administrative burden on the NDIA and build confidence in the process for the consumer.

“Many people with long-term psychosocial disability have become so institutionalised by the MH system (even if they have never been in a psychiatric institution) that they are not familiar with exercising choice, and have difficulty conceptualising what is possible. Unless planners are skilled and experienced in working with people with psychosocial disability it will be difficult for them to understand this and to adapt their processes accordingly. As above, socially isolated consumers are likely to be highly anxious about meeting with planners and may have difficulty conceptualising the planner as being a person who is ‘on their side’ – they are far more used to dealing with agencies and officials who want to narrow their options rather than expand them.”

 Inclusion of a risk assessment framework VICSERV supports the development of a risk assessment process as set out under the recently released NDIS Quality and Safeguarding Framework. As outlined in the framework, “a holistic assessment of the risks a participant faces, which takes into account their family circumstances, informal supports and individual capabilities, is critical to enabling informed choice. It is also critical to identifying those who may be most at risk of abuse,

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violence, neglect and exploitation or who may be vulnerable to other risks, such as service provider failure”. The recognition that families and carers and peer workers, in particular, can play an important role supporting individuals to make choices about their supports is also important.

  1. Review There needs to be an adaptive and flexible approach to the planning process, providing consumers with the opportunity to review plans prior to them being finalised by the NDIA. There are incidents where people don’t know what they are going to get until the plan is submitted – and there is currently no opportunity to take time to consider the plan before it is finalised. Then, if it turns out that the plan is not working for them they need to go through a lengthy appeal process. Plan errors and inconsistencies not only create confusion and frustration for consumers, their families and carers, they also place a heavy administrative burden on community mental health organisations and the NDIA.

“20-30% of plans needed to be reviewed as supports outlined in the plans were inadequate. There are delays of up to 4 months in getting a plan reviewed by the NDIA.”

Outreach services to identify potential NDIS participants with a psychosocial disability It has become apparent that there is a lack of a systemic outreach process under the NDIS. Community mental health organisations are concerned about how consumers, who may be eligible for a plan, will be engaged and supported to access the NDIS. This is particularly concerning for vulnerable and dis-engaged people, including indigenous, CALD and homeless groups. The issues raised by community mental health organisations at our consultation include:

  • There are cohorts of people that can sometimes be difficult to reach and connect with and pressure is being placed on the community mental health organisations to get out there and do the outreach work, but this is unfunded

  • The mechanics of the NDIS provide no incentive for community mental health organisations to persist with hard-to-reach clients because work is not funded until they are engaged and in order to stay financially viable community mental health organisations have to take this into consideration

  • People living in rural and remote areas have less access to services. Identifying people within these communities requires a significant investment of time and resources.

“Intensive, long-term individualised support (PHaMs model) has been very effective in reducing social isolation, linking consumers to relevant services, increasing daily living skills at home and in the community, and improving relationships with families and friends – all of which has resulted in improvements in quality of life for a large number of participants. A key feature of this model is the ability of staff to travel to the consumer’s home or preferred location (we are located in NE Vic, so this can be a round trip of up to 200kms), and the ability of staff to persist with engagement and relationship building with the consumer. Many people with psychosocial disability benefit from a lengthy engagement period as they often struggle with anxiety, trust, low self-confidence, past history of trauma, paranoia etc. It is easier for them to reject engagement with services if staff are not funded to be able to persist.”

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The interface between the NDIS and wider mental health system The issues associated with the continuation of services for NDIS participants in receipt of forensic disability services highlights the difficulties associated with the current interface of the NDIS with the wider mental health system. It is not uncommon for an individual with psychosocial disability to move between systems. Previously, mental health organisations would have ensured in-reach, relationship-building activities for people who have been incarcerated or held in 24-hour facilities as this would allow for a case to be built for community transition when the individual was ready to be released. However, as the NDIS now sits outside of forensic services, the types of services community mental health organisations would have previously offered will not occur and providing continuity of care for individuals that move between systems will be challenging. To ensure better outcomes for individuals living with mental illness, a greater focus needs to be placed on designing an effective systematic process that spans the wider mental health system.

Impacts of the NDIS on the mental health workforce A key concern with the NDIS, for the community mental health sector, is how it will respond to people with psychosocial disability to both reduce the disabling impacts of their illness whilst maintaining high quality disability support. Community mental health organisations within the community managed mental health sector prioritise community-based rehabilitation to support individuals to recover, and through this the sector has developed a workforce that is appropriately qualified and skilled to deliver these services and a culture that reflects the appropriate standards. In Victoria for example, 90 per cent of the community mental health sector holds a diploma or higher qualification2. However, the hourly rates included in the NDIS pricing structure demonstrate a lack acknowledgement and understanding about the level of skills and expertise that are required to provide disability support to individuals with serious mental illness. This imparts several challenges for mental health organisations, such as:  A significant decrease in the level of salary providers will be able to afford to pay staff  The potential of moving to a highly casualised staffing structure  An inability to retain the highly skilled and experienced workforce we currently employ  An inability to provide a supportive and nurturing team structure and culture when staff may be working off-site and on irregular shifts

     Difficulty  in being able to afford time for essentials such as supervision and professional

development  Inability to provide a consistent worker for individuals who seek this

   Workplace health and safety concerns  for  staff working  in  isolation and  in uncontrolled

environments such as people’s homes, etc. A key piece of work that is required is an examination of the overall workforce in mental health, including the community mental health sector, to ensure there is an informed and properly planned approach to

2 Psychiatric Disability Services of Victoria (VICSERV) (2017), Organisational Capability Framework Project for Mental Health Community Support Service – Pilot Survey – Final Report, available at http://www.vicserv.org.au/training/new-training projects/267-article-1 8

developing, supporting and maintaining the workforce to deliver the range of mental health reforms that are occurring. The development of a national workforce strategy would support both the mental health workforce and primary health workers to prepare for and manage through mental health reforms, including the NDIS.

The role for families and carers There is currently no recognition of the roles of carers in the NDIS. Carers and families have expressed concern that this lack of recognition will reduce their capacity to provide informal support and to maintain their own health and wellbeing. For some carers, the NDIS can offer respite as support workers take on some of the responsibilities, but it does not fund the much-needed emotional support. Consultations with carers revealed that respite works well for carers whose loved one is actively engaged with their supports, but respite is not being felt by carers who are still required to support their loved one to access supports. Carers play a key role in the recovery of their loved ones and an allocation of funds should be provided from outside the NDIS, to support carers in undertaking the support role.

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