Submission to the Joint Standing Committee on the National Disability Insurance Scheme on the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition
Wide Bay Partners in Recovery Consortia
February 2017
Contents
1.0 Background …………………………………………………………………………………………………………. 3
2.0 Introduction ………………………………………………………………………………………………………… 3 2.1 Information Sources …………………………………………………………………………………………………… 4 2.2 Challenges in Understanding the Impacts of the NDIS ……………………………………………………. 4
3.0 Recommendations ……………………………………………………………………………………………….. 5
4.0 Mental Health Services in the Wide Bay …………………………………………………………………. 5 4.1 Needs of our region ……………………………………………………………………………………………………. 5 4.2 Efficacy of PIR & PHaMs ……………………………………………………………………………………………… 5 4.3 Limitations of PHaMs & PIR Services ……………………………………………………………………………. 6
5.0 How the NDIS will Impact Service Delivery……………………………………………………………….. 7 5.1 The needs of NDIS-Eligible clients ………………………………………………………………………………… 7 5.2 Barriers to Accessing the NDIS for Eligible Clients ………………………………………………………….. 7 5.3 The Needs of NDIS-Ineligible clients …………………………………………………………………………….. 8 5.3 Barriers to Accessing Services in a post-NDIS Environment …………………………………………….. 8
6.0 Conclusion ……………………………………………………………………………………………………………. 9
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1.0 Background
On 30 November 2016, the Joint Standing Committee on the NDIS was referred for inquiry and report the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition. The terms of reference are:
a. the eligibility criteria for the NDIS for people with a psychosocial disability; 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, and in particular;
i. whether these services will continue to be provided for people deemed ineligible for the NDIS;
c. the transition to 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;
d. the scope and level of funding for mental health services under the Information, Linkages and Capacity building framework;
e. the planning process for people with a psychosocial disability, and the role of primary health networks in that process;
f. whether spending on services for people with a psychosocial disability is in line with
projections;
g. the role and extent of outreach services to identify potential NDIS participants with a psychosocial disability; and
h. the provision, and continuation of services for NDIS participants in receipt of forensic disability services;
i. any related matter. 2.0 Introduction
Wide Bay Partners in Recovery (Wide Bay PIR) Consortia are pleased to provide this written submission to the Joint Standing Committee on the NDIS (the Committee) regarding our experiences and outcomes working with and for regional Queenslanders who experience severe and/or complex mental illness.
Wide Bay PIR is led by the Central Queensland, Wide Bay, Sunshine Coast PHN (PHN) and consists of members from the Wide Bay Hospital and Health Service, Bridges Health and Community Care,
Community Solutions, Flourish Australia, Impact Community Services , Richmond Fellowship
Queensland and Suncare Community Services.
Wide Bay PIR works together by:
Developing a common agenda for improved mental health and wellbeing for our region; Engaging collectively in progressing a mutual plan of action; Enabling consistent, open and ongoing communication; Sharing data collection and measurement activities; and Harnessing the unique skill sets of each partner to establish a collective backbone of support for the Wide Bay region.
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While the consortia welcomes the opportunity that the National Disability Insurance Scheme (NDIS) brings to our region in terms of increased support for people with a psychosocial disability, we wish to ensure that this is done in a way that does not diminish the considerable achievements that PIR and other programs have made in providing effective and integrated care for our community.
This report focuses on providing an insight into the services currently provided via the PIR program in our region, and looks at what barriers may occur for PIR-clients under an NDIS model. The outcomes of the PHaMs program are also noted as a valued consortia member and community collaborator. This paper gives particular focus to the Committee’s terms of reference 1 (b):
The transition to the NDIS of all current long and short term mental health Commonwealth Government funded services, including the 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.
2.1 Information Sources
A considerable amount of data, research and local knowledge influences the commentary provided within this paper, including:
Desktop auditing of Wide Bay PIR clients to determine eligibility for the NDIS; Case Study analysis of anticipated eligible and ineligible NDIS clients to identify opportunities, trends, concerns and gaps; Consultation with Wide Bay PIR Supports Facilitators; Consultation with Wide Bay Health and Hospital Service Community and In-patient mental health services staff; Participation in local NDIS-readiness working groups; Consultation with the National Disability Insurance Agency (NDIA); Consultation with Queensland-wide Partners In Recovery Managers; Consultation and ongoing conversations with local consumers of services; CQ University Evaluation (2016) of the Wide Bay PIR program; and Our PHN Wide Bay region needs analysis.
The discussion and analysis detailed in this report is the collective work of the Operations
Management Group of Wide Bay PIR. Collectively, we represent over 50 years’ experience across clinical, operational and psychosocial service delivery as well as business analytics.
2.2 Challenges in Understanding the Impacts of the NDIS As we have observed the NDIS rollout take place in other regions, it has become evident that there is yet to be clarity and consistency to the access, assessment and plan implementation aspects of the program. This has been exacerbated by confusion from the NDIA and community regarding the differences between living with a mental illness and living with a psychosocial disability.
While Wide Bay PIR continues to engage with the NDIA within our region and keep across the information provided from active sites, we acknowledge that anyone’s ability to understand the implications of the NDIS definitively at this stage is significantly limited. Therefore, this paper provides information based on our best understanding of how the NDIS will impact people with a mental illness across the Wide Bay region.
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3.0 Recommendations Accordingly, the Wide Bay Consortia make the following recommendations. We request the inquiry give due consideration to each:
That PIR services are utilised to provide a warm-referral process to the NDIS rather than the NDIA initiating this contact independent of the PIR; and A new program be developed that reflects a hybrid model of the existing PIR/PHaMs programs. This service would provide wraparound supports for clients for a 6 – 12 month period, either transitioning them through to the NDIS (if this is determined to be necessary), or to mainstream community services. This service would be a key collaborator of the NDIAs Local Area Coordinator model.
4.0 Mental Health Services in the Wide Bay
4.1 Needs of our region The Wide Bay (our region) has a number of demographic, geographical, economic and health challenges that influence social determinants and the effective delivery of mental health services. A lack of professional services limits access to specialist care and a resulting lack of choice and control for service users. People in our region have a considerable chance of experiencing socio-economic disadvantage, with significant unemployment issues (especially for young people), high levels of rental stress and a significant number of families with children who have no parent employed.
Our region spans rural, remote and city centres, covering 37,049.8km2 with a combined population of 211,979 across four Local Government Areasi. Communities within our region identify as distinct from each other; often taking different approaches to problem-solving and developing social supports that reflect their location and access to services.
Of particular concern, our region experiences a higher level of psychological distress when compared with Queensland. Further compounding this issue on the Fraser Coast (a section of the Wide Bay) are the significantly lower rates of mental health care plans prepared by GPs compared to Australia-wide figures.
In light of such challenges, the communities we support are likely to experience higher rates of psychological distress. Programs such as PIR and PHaMs assist in tackling these issues through a person-centred approach that enables individuals to guide how their needs are addressed.
4.2 Efficacy of PIR & PHaMs While under-resourced compared to the needs of our region, PIR and PHaMs have made significant contributions to our region. This is reflected in the results achieved in the Bundaberg area, which represents 44.5% of our region’s population. The introduction of PHaMs offered an opportunity to build referral pathways for people exiting the Wide Bay Hospital and Health Service Mental Health Unit (MHU) as well as preventing admissions and readmissions due to a lack of psychosocial services.
The achievements of the PHaMs program were further built upon by the introduction of the PIR program which increased our region’s responsiveness to emerging needs. PIR enabled GPs, Emergency Departments and Community Mental Health Teams’ a smooth referral pathway to the social services commonly needed by people who experience mental distress as a result of circumstance. These situations often leave people with little to no informal networks, can result in homelessness and an increased risk of further traumatisation. Minimal availability of further treatment options through
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their local MHU due to no Axis 1 diagnosis (excluding those who have psychosocial and environmental problems) creates significant barriers. PIR has been able to respond quickly (often within three hours of notification) to connect with people and start working to establish the basic supports and networks that foster recovery.
Local MHU staff have noted that having PIR as a referral point has enabled them to take advantage of the often small windows of opportunity that occur when a person presents at a Hospital to seek assistance. Without such a program to refer to, people would be assessed to ensure that they are not a danger to themselves and/or others and then discharged with recommendations to follow-up with a private psychiatrist or psychologist, which in our region can take anywhere from one to six months.
Prior to the introduction of the PHaMs program, the Bundaberg Community Mental Health Team maintained a caseload of 495 clients (on average). This has been reduced to a caseload that ranges between 215 – 250 clients (~50% decrease) which has been maintained for over five years. MHU reports that this is a direct result of their ability to work hand-in-hand with PHaMs and PIR while focusing on what they do best – therapeutic intervention for people with an Axis 1 diagnosis.
The PIR program has a proven track record of connecting with people who often experience considerable challenges in engaging effectively with programs. A recent evaluation of the service identified that its clients found the program to be delivered in a respectful and readily accessible way. Some client feedback provided as part of this evaluation included:
“I don’t feel stupid” “I feel heard” “[they] provided non-judgemental support” “she was willing to listen” “[they] help me with every aspect of my health and wellbeing” “I wish I had found them [PIR] sooner” “I didn’t feel alone” “I was too afraid to leave the house … [but] the support facilitator would come and visit me as often as I needed when I first started with PIR”
We would argue that it is the flexible paths to accessing PIR, the immediacy with which we can respond and our willingness to start where the person is at (both physically and psychology) that has enabled such results. This is a distinctive feature of the PIR initiative when compared to the often confusing and daunting assessment processes people often have to persist with prior to receiving assistance.
4.3 Limitations of PHaMs & PIR Services We openly acknowledge that there is more demand than can be met within the current matrix of federal and state funded programs for people with severe and complex mental illness. In spite of the achievements of these programs, Wide Bay consumers still identify challenges in being connected to the right service at the right time.
For those whose recovery journey is further complicated by the barriers caused by psychosocial disability, the NDIS provides an opportunity to receive flexible supports that can grow and change to reflect their recovery journey. However there are concerns that for those who do not need an NDIS level of support, access to services may decrease further.
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5.0 How the NDIS will Impact Service Delivery
5.1 The needs of NDIS-Eligible clients Case Example – “Trudy” Wide Bay PIR anticipates that approximately 71% of current clients will be considered eligible Trudy is a woman in her 50s living with participants under the NDIS. These participants Schizophrenia and Personality Disorder diagnoses.
most commonly have an Axis 1 diagnosed Trudy has experienced significant trauma
mental illness and more than 50% present with throughout her life, particularly as a young child.
co-existing factors such as chronic disease, Prior to being referred to PIR in 2014, Trudy was
labelled a “frequent flyer” by the Hospital and physical disability and alcohol or drug
Health service due to presenting at Community
dependency. Their needs reflect years of
Mental Health over 25 times in four years. inappropriate or non-existent supports that have further isolated and marginalised their place Trudy’s preference is to be in the “now”, and this within society and, created significant barriers to has made it difficult for her to engage meaningfully effective participation in daily activities. with traditional counselling models. Her PIR Supports Facilitator was able to establish a trusting Similar to the case example of Trudy, PIR clients relationship over a period of time by giving Trudy who will most likely be eligible for services under flexibility in how and when they connected as well an NDIS have a complex history that informs as determining what issues she wanted help with.
their current level of need. This frequently Through this process, Trudy has become connected
to other mainstream services for support. includes significant trauma that often impacts on how an individual builds trust with a service Trudy has a small handful of good friends, but they provider. PIR has played a unique role in being are often unable to help her as intensively as she able to establish connections with people who requires. The flexibility with which PIR can re have refused other services due to a lack of trust. engage and disengage depending on her needs This strength of the PIR program appears to be suits Trudy, particularly when she experiences periods of paranoia. It is anticipated that Trudy will grounded in its approach to working with people be eligible for the NDIS and will experience an on the issues that they find important, rather increase in quality of life outcomes. than placing conditions on their involvement.
5.2 Barriers to Accessing the NDIS for Eligible Clients While PIR is an adjunct program that works with autonomous people, we frequently play a key role in providing a personalised referral process when supporting clients to engage with other services for the first time. In such situations it is common for PIR to be present at initial and follow-up sessions for three to six months.
In other regions, the NDIA has requested data from PIR agencies be provided directly to them so that they can make initial contact directly with PIR clients. Given the levels of trauma often experienced by PIR clients combined with a distrust of services, this poses a high level of risk that, when contacted, people decline the services or worse, it triggers anxiety and distress regarding the assessment process.
While risk cannot always be removed nor should it be, it seems an unnecessary risk to initiate contact in this way when PIR staff are available and skilled in providing a smooth referral process on behalf of the NDIA. It would also reflect the “In-kind” services that we are contractually obliged to provide during transition to the NDIS.
Recommendation 1: PIR services are utilised to provide a warm-referral process to the NDIS rather than the NDIA initiating those referrals.
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5.3 The Needs of NDIS-Ineligible clients
Wide Bay PIR anticipate that 29% of current clients Case Example – “John” will not be eligible for NDIS services. The needs of John is in his mid-twenties and self-referred to PIR this cohort tend to be as a result of life events or when he was a patient at the MHU. John had been environmental pressures. They also tend to have admitted as a result of anxiety, depression, self- stronger informal networks that while they may harm and self-medication. Things had gotten on have been temporarily displaced from, they are top of him and over a period of time he had able to re-establish these reconnections over a become detached from his family and felt he short period of time (i.e. 6 – 12 months). Their couldn’t live up to others expectations. needs can often be met by mainstream services, At the point of discharge, John had a limited social however the engagement process still remains a network due to giving up cannabis and choosing considerable challenge. not to socialise with friends who still use.
PIR has played a key role in establishing
Over six months, PIR assisted John to reconnect relationships that can persist with, and on behalf
with his family, link with an employment agency of, the often difficult process of connecting
and connect with services that could assist him to people to these services. Psychological distress address the issues that triggered his anxiety and commonly impairs both receptive and expressive depression. PIR played a key role for John, who communication, and this is further compounded had previously been linked with online and over
by the lack of a specialised skillset when the-phone services but found these impersonal
and disingenuous. connecting people to mainstream services with little specialised awareness or skills in supporting It is anticipated that John will not be eligible for people with mental illness. NDIS services. While this is an accurate reflection of his needs, the NDIS will mean that services such By engaging in the window of opportunity and as PIR that are able to engage with people for applying a high level of mental health awareness short periods will no longer be accessible. and knowledge to an individual’s situation, PIR is able to provide a safe space during the early stages of a person’s recovery journey.
While we would agree that those clients who we anticipate will be ineligible do not require NDIS specific services, they do need services. The case example of John highlights this need. Without timely support, John’s transition back to community living, his ability to engage with the services he needed and, re-establish his support networks would have been considerably limited.
5.3 Barriers to Accessing Services in a post-NDIS Environment Removing PHaMs and PIR effectively removes all discharge referral planning options available to the HHS in our region. It removes the psychosocial service options for people who do not have an Axis 1 diagnosis and therefore are unlikely to secure services from the NDIS.
When reviewing current cases and asking the question “what psychosocial service could this person be referred to post-NDIS”, the answer was none: all available services are expected to transition to NDIS service provision only. While the Primary Health Network (PHN) will have responsibilities regarding a stepped-care model, this cannot be used to fund psychosocial supports (outside of a
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specified budget in suicide prevention). This is further compounded by the current understanding that state-funded mental health care packages are intended to transition to the NDIS.
This loss of service will significantly limit the ability of individuals to receive timely support from a relevant service when they identify that they are in distress and need some temporary supports. Users of Mental Health Services in our region consistently speak of the frustration they experience in supporting and encouraging loved ones to seek help and the sense of hopelessness they feel when instead of a helpful response they are told there is none available. Removing services such as PHaMs and PIR in our region will increase these experiences.
In the long-term, there is a risk in services such as PIR and PHaMs not being provided while people await the assessment and planning process with the NDIS. Outcomes demonstrate that strong psychosocial services provided in the early stages of recovery increase positive outcomes. While the NDIAs Local Area Coordinator (LAC) program is indicated to have an ability to refer people to available services while the assessment process is occurring, in regional Australia it is highly likely that current services will no longer exist as a referral point. Our Consortia is hopeful that funding available via the Information, Linkages and Capacity Building (ILC) arm of the LAC can form part of an appropriate solution. However, the practical application of ILC funds to address these service gaps in unknown.
Recommendation 2: A new program be developed that reflects a hybrid model of the existing PIR/PHaMs programs. This service would provide wraparound supports for clients for a 6 – 12 month period, either transitioning them through to the NDIS (if this is determined to be necessary), or to mainstream community services. This service would be a key collaborator of the NDIAs Local Area Coordinator model.
6.0 Conclusion The Wide Bay PIR Consortia is grateful to the Committee for this opportunity to inform you about the needs of our region and the ways we are anticipating NDIS impacting the services available to our communities. We are committed to working with the communities we support to collaborate with local, state and federal governments and the NDIA to implement this historical change in the way we deliver services. We are equally committed to ensuring that people are not forgotten or lost in the process.
We would welcome any additional opportunities to provide information or insights into our region and the needs of the communities we support.
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