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
Submission by Tandem Inc.
Representing Victoria’s Mental Health Carers
February 2017
Table of contents Executive Summary of Recommendations …………………………………………………………………………………………………………2 About Tandem …………………………………………………………………………………………………………………………………………….2 Introduction ………………………………………………………………………………………………………………………………………………..4 Families and carers of a person living with a mental illness (psychosocial disability) ………………………………………………… 4 How the supporting and caring role impacts families and carers ………………………………………………………………………… 4 Families and carers under the NDIS ………………………………………………………………………………………………………………….. 5 Families and carers require targeted supports in the NDIS …………………………………………………………………………………. 6 Families and carers require adequate funding for carer specific supports and services external to the NDIS …………. 6 Response to the Terms of Reference ………………………………………………………………………………………………………………..7 The eligibility criteria for the NDIS for people with a psychosocial disability. …………………………………………………………… 7 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; and whether these services will continue to be provided for people deemed ineligible for the NDIS. ………………………………………………………………………………………………………………………………………… 7 The transition to the NDIS of all current long and short term mental health state and territory government-funded services, and in particular; and whether these services will continue to be provided for people deemed ineligible for the NDIS. ………………………………………………………………………………………………………………………………………………………. 9 The scope and level of funding for mental health services under the Information, Linkages and Capacity Building framework. ………………………………………………………………………………………………………………………………………………………… 9 The planning process for people with a psychosocial disability, and the role of primary health networks in that process. …………………………………………………………………………………………………………………………………………………………… 10 The role and extent of outreach services to identify potential NDIS participants with a psychosocial disability……….. 14
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Executive Summary of Recommendations
R1 The NDIA recognises that nearly 60% of mental health carers report that they need support, compared to a third of carers in other situations. R2 The NDIS meaningfully acknowledges and responds to the support needs of families and carers to ensure the sustainability and strength of informal supports. This needs to extend beyond the current limitations which restrict support within the NDIS to be directly related to NDIS participant outcomes or included within the IFP at the participant’s discretion. R3 There is adequate support for people who are experiencing mental health challenges who are not eligible for the NDIS. A loss of adequate supports outside of the NDIS will have a devastating impact for those who are not eligible, their families and carers. R4 Assessments and conversations centre around functional capacity and impact on one’s life, rather than focus on the language of ‘permanence’ and disability. R5 NDIS access and planning staff be adequately trained to appropriately assess psychosocial disability and be skilled in trauma informed care to adequately reduce or avoid intrusive, triggering and unsupportive conversations for both the participants and their families and carers. R6 Care is taken to ensure the Commonwealth Government’s decision that PHaMs will be absorbed in total by the NDIS does not shift the burden for support – previously provided through this program – to families and carers of those not eligible for assistance under the NDIS. R7 Tandem recommends that NDIA ensures the transition of services such as the PIR does not shift responsibility to families, carers and other informal supports to compensate for service gaps. R8 Due to the serious limitations of carer support options for families and carer health and wellbeing included within the NDIS IFP and ILC, it is crucial that adequate funding and programs remain to ensure that families and carers are appropriately supported to maintain their own wellbeing and their caring relationship. R9 The Government honours the commitment made to the ‘principle of no disadvantage’ through the Intergovernmental Agreement for the NDIS Launch (IGA) that ‘no one will be worse off’ under the scheme, and to ensure that this commitment is in no way undermined by the limitations and lack of scope of ILC funding available to support families and carers. R10 The planning process be amended to ensure that informal supports are adequately recognised throughout the planning process. R11 Planning meetings with those with a psychosocial disability and their families and carers be held face-to-face wherever possible or families and carers routinely be invited to provide a Carers Statement. R12 All planners are trained to understand the principles of family inclusive practice to ensure carers are able to validate their roles as collaborative partners. R13 Tandem recommends the NDIA adopt the United Kingdom model of formalising a carer needs assessment distinguishing between the support needs of the care recipient and the Carer. This approach powerfully validates both the importance of the Carer role and that families and carers have needs that are not directly linked to the outcomes of the person they support. R14 Measures are put in place to ensure that families and carers are not carrying the ‘burden of proof’ for eligibility for the NDIS for the person with a psychosocial disability. R15 All participants, families and carers are informed of the process for either identifying or becoming a nominee during the access and planning stage. This would allow the participant, family and carers to agree to the circumstances where families or carers can assist with decision making (should the person they care for become unwell) to reactivate their NDIS supports.
About Tandem
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Who we are Tandem is the Victorian peak body representing families and carers of people living with mental health challenges or a psychosocial disability. We advocate for carer involvement in planning and care, participation in system change and support for families and carers.
Mission
Our mission is to ensure that the importance of the contribution, expertise, experiences and the needs of families and other carers is recognised and that these needs are addressed.
Vision
Families and other carers of people with mental health challenges will be partners in treatment, in service delivery, planning, research and evaluation. The lived experience of families and other carers will be the key driver of policy and program formation at both the individual and systemic level.
Our values Who is a carer?
• Recognition and respect for the contribution of families and other A carer may be, and will continue
carers, and the value of lived experience to be, primarily the person’s wife,
• Justice and equity husband, partner, son, daughter,
• Inclusion of families and other carers in all aspects of the mental parent, neighbour, friend, … their
health system child or children. It doesn’t matter how many hours are spent each week
• Diversity within the consumer and carer communities providing support. Carers may live
• Commitment to recovery, positive outcomes, empowerment and with the person they are caring for,
personal dignity for consumers and carers providing assistance with daily needs,
• Upholding the human rights of consumers, families and other carers or may visit the person regularly.
Carers are people who invest time,
• Innovation using an evidence-based approach to policy and program energy and support, generally in an
issues unpaid capacity. However, some may
• Partnership and collaboration. receive Centrelink benefits to enable
them to continue in their caring role. Carers are often hidden…. Children who become carers face particular Details difficulties in being recognised and Name and address of applicant: Tandem Inc., Level 1, 37 Mollison Street, having their needs met. In culturally Abbotsford 3067 diverse communities, care may involve the entire community and may provide additional challenges during the process of identifying who is a carer.
For more information about this submission please contact: Adapted from A Practical Guide
for Working with Carers of People Marie Piu, Chief Executive Officer
with a Mental Illness, p.6
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Introduction
Tandem welcomes the opportunity to contribute to the Committee’s Inquiry into the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition. The National Disability Insurance Scheme (NDIS) presents a significant opportunity to increase supports and improve the lives of persons living with a psychosocial disability, their families and carers.
In this submission we hope to convey the experiences of families and carers of people living with mental health challenges and highlight how families and carers are impacted by the current limitations of the NDIS design. The Committee Inquiry provides families and carers of a person living with mental illness a vital opportunity to highlight the challenges they are experiencing with the NDIS processes and to influence meaningful change and in this response we draw on the feedback we have received from families and carers directly as well as during community consultations.
The experience of families and carers of people experiencing mental health challenges differs significantly from that of carers of people who have a physical, intellectual, sensory or neurological disability.
Families and carers of a person living with a mental illness (psychosocial disability) Families and carers play a vital support role for many people living with a mental illness but can experience major personal impacts as a result. Due to the complexities of mental illness, the impact on families and carers can be more severe than in other caring contexts. Research has illustrated that mental health carers have consistently rated their own health and mental health significantly worse, than carers in other contexts and were more likely to say they need supportive services for themselves.
Nearly 60% of mental health carers reported that they need support, compared to a third of carers in other situations1. Research conducted in 2015 and 2016 revealed that the mental and emotional health of carers in the area of mental health were adversely impacted, with 40% of a sample study meeting the criteria for a possible psychiatric disorder.2 Despite being more likely to have accessed support, mental health carers are also more likely to experience barriers to accessing services – by far the most commonly reported in this survey was that their caring responsibilities take priority over their own needs.3 Living and/or supporting a person living with mental illness can significantly disrupt family functioning, at times resulting in conflict and breakdown4.
The stigma, guilt and isolation associated with mental illness create further difficulties and barriers that can prevent families and carers, and the person they care for, from asking or receiving help from formal and informal sources. The NDIA needs to be prepared to actively dismantle these barriers in the psychosocial space to ensure that that NDIS funding and supports adequately assess, understand and reach the needs of people living with a psychosocial disability and their support networks.
Recommendation 1 The NDIA recognises that nearly 60% of mental health carers report that they need support, compared to a third of carers in other situations.
How the supporting and caring role impacts families and carers Families and friends who support someone in their life with a disability play a vital role in the support and wellbeing of the person they care for.5 Although providing support and care for a family member has been found to provide families and carers satisfaction in terms of enhancing their relationships, meeting perceived responsibilities and enhancing their
1 Australian Institute of Family Studies (2014) Support needs when caring for a person with a mental illness. 2 Remedios and colleagues (2015) & Hayes and colleagues (2016) in Anglicare Carers: Doing it Tough, Doing it Well (2016). 3 Australian Institute of Family Studies (2014) Support needs when caring for a person with a mental illness. 4 The Network for Carers of People with Mental Illness (2001) Differences and Similarities in Experiences of Carers of People with Mental Illness and Other Carers. 5 Simply on a monetary basis the value of care provided by informal carers was estimated to have a replacement value of about $60 billion. Deloitte, Access Economics (2015).
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self-esteem,6 it can also adversely impact on the lives and wellbeing of families and carers, especially over the longer term7. These negative impacts can include:
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Financial costs associated with the illness and caring circumstances can be significant
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Reduced capacity and opportunities for employment8
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Strains of daily working and family life9
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Educational activities and opportunities can be compromised, particularly for younger carers
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Family structures and relationships can be strained and challenged within the immediate and wider family
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Social relationships can be adversely impacted
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The emotional, social and physical wellbeing of carers can be adversely affected. Carers are reported to experience greater exhaustion, stress, anxiety, depression and physical ill-health and non-carers10
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A sense of powerlessness
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Reduced optimism and quality of life, due to concerns related to the caring role and long-term care prospects, particularly for older carers
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A sense of isolation from the wider community, supports and services.11 Families and carers under the NDIS The NDIS Act 201312 acknowledges the Carer Recognition Act 2010, although the focus of the Act is evidently focused on the person with a disability, and the carer is included as adjunct. This is evident when it states
Where relevant, consider and respect the role of family, carers and other persons who are significant in the life of the participant (S31.c) and,
Where possible, strengthen and build the capacity of families and carers to support children (S31.d.)
If the participant and the participant’s carer agree – strengthen and build the capacity of families and carers to support the participant in adult life (S31.da.)
The ‘Act’ does not recognised that families, carers and other significant support persons, may be ‘hidden’ such as children or community members in culturally diverse communities.
Family and carer needs and supports are not formally recognised and addressed as part of NDIS packages, and are limited in scope under the NDIS ILC funding. Throughout the NDIS Access and Planning process there is no formal assessment of the needs of the family and carers, no guarantee of supports and no guarantee of involvement in contributing to the assessment of the NDIS participant’s needs13. Families and carer are mostly unaware that they can be supported through the plan of the person they support, and are further unaware that they can submit a Carers Statement.
6 Savage and Bailey (2012) in Implications for family carers when people with a disability have individualised funding packages (2015) literature review, Mind Australia and the Centre for Mental Health, Melbourne School of Population and Global Health, University of Melbourne. 7 See, Anglicare Carers: Doing it Tough, Doing it Well (2016) and The Network For Carers of People with Mental Illness (2001) Differences and Similarities in Experiences of Carers of People with Mental Illness and Other Carers. 8 See Galvin and Peters (2014), ABS (2016), Williamson and Perkins (2014) in Anglicare Carers: Doing it Tough, Doing it Well (2016). 9 See Harper et al, (2013), Link (2015) and Welsh, Dyer, Evans and Fereday, (2014) in Anglicare Carers: Doing it Tough, Doing it Well (2016). 10 See, Anglicare Carers: Doing it Tough, Doing it Well 2016 and The Network For Carers of People with Mental Illness (2001) Differences and Similarities in Experiences of Carers of People with Mental Illness and Other Carers. 11 Hayes et al (2015) and Rodger, O’Neill & Nugent (2015) in Anglicare Carers: Doing it Tough, Doing it Well (2016). 12 National Disability Insurance Scheme Act 2013 (Cth). 13 Anglicare Carers: Doing it Tough, Doing it Well (2016).
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Families and carers require targeted supports in the NDIS The scope of supports and funding for services provided within the current NDIS model for families and carers is inadequate in addressing the complex support needs of people who provide informal supports to a person living with psychosocial disability.
Recommendation 2 The NDIS meaningfully acknowledges and responds to the support needs of families and carers to ensure the sustainability and strength of informal supports. This needs to extend beyond the current limitations which restrict support within the NDIS to be directly related to NDIS participant outcomes or included within the IFP at the participant’s discretion.
Families and carers require adequate funding for carer specific supports and services external to the NDIS It is estimated that only 12% of people with severe and persistent mental illness with be will be eligible for NDIS individually funded supports as result of psychosocial disability related to mental illness14. It is projected that 321,000 people with an episodic mental illness and 103,000 with a severe and persistent mental illness will be deemed ineligible, with only 60,000 eligible to access supports under the scheme15.
Therefore, the majority of people living with an episodic or severe mental illness, and their family and carers are reliant on State and Commonwealth funded supports and services that fall outside of the scope of NDIS funding.
Even for the 60,000 who are deemed eligible and successfully access the scheme, the supports and services available to families and carers through the Individual Support Packages and the funding associated with the ILC is severely limited. There is very little scope for the emotional, social and physical wellbeing of families and carers to be supported within the scheme. This heightens the importance of families and carer continuing to receive the crucial supports they require to sustain their own wellbeing caring role through funding external to the NDIS.
Recommendation 3 There is adequate support for people who are experiencing mental health challenges who are not eligible for the NDIS. A loss of adequate supports outside of the NDIS will have a devastating impact for those who are not eligible, their families and carers.
14 Productivity Commission (2011) Inquiry into Disability Care and Support Report, Report No. 54, Canberra. Appendix M p. M.4. 15 Australian Government Actuary (2012) National Disability Insurance Scheme Costings – review by The Australian Government Actuary.
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Response to the Terms of Reference
The eligibility criteria for the NDIS for people with a psychosocial disability. ‘Permanence’ as a barrier For the determination of eligibility under the NDIS, a person is required to provide evidence of impairment attributable to a psychiatric condition that is, or is likely to be, permanent16. As has been well documented and discussed regarding the appropriateness of the inclusion of psychosocial disability within the NDIS, conversations about ‘permanence’ can be unhelpful for the participant’s recovery. A reliance on the language of permanence as a requirement to access the scheme creates barriers for people. Tandem has heard numerous anecdotes from family and carers of the person that they care for declining to engage with the NDIS because they do not view their situation as a ‘psychosocial disability ‘that is ‘permanent’.
Interpretation of the eligibility criteria made during the access process need to be responsive to the complexities associated with episodic mental illnesses to overcome the conceptual tensions between the mental health sector and the NDIS’s concept of permanent disability17. NDIS staff need to be adequately trained to have the necessary skills to appropriately assess psychosocial disability to reduce barriers that may prevent people accessing the scheme.
Recommendation 4 Assessments and conversations centre around functional capacity and impact on one’s life, rather than focus on the language of ‘permanence’ and disability18.
Recommendation 5 NDIS access and planning staff be adequately trained to appropriately assess psychosocial disability and be skilled in trauma informed care to adequately reduce or avoid intrusive, triggering and unsupportive conversations for both the participants and their families and carers
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; and whether these services will continue to be provided for people deemed ineligible for the NDIS. Personal Mentors and Helpers (PHaMs) PhaMs provides practical assistance and intensive one-on-one support to develop better relationships with family and friends to manage everyday tasks. The Commonwealth government has indicated the PhaMs will be absorbed in total by the NDIS.
Tandem is concerned by the inconsistencies between the NDIS modelling for those who currently access this program. The NDIS is limited to people between the ages of 18–64, and for people with a disability that is permanent requiring lifetime support. As the access requirements for PhaMs did not include the same limitations, we are concerned about the possibility of service gaps opening for those ineligible for the NDIS, and who will no longer be able to access the PhaMs programs. This shifts the burden back to families and carers to take on the role of the PhaMs worker, to provide the practical assistance and one on one support the person they support will still require, once the program ceases for the mainstream community.
16 Completing the access process for the NDIS Tips for Communicating about Psychosocial Disability (2016). 17 Implications for Family Carers when People with a Disability have Individualised Funding Packages (2015), literature review, Mind Australia and the Centre for Mental Health, Melbourne School of Population and Global Health, University of Melbourne. 18 Implications for Family Carers when People with a Disability have Individualised Funding Packages (2015), literature review, Mind Australia and the Centre for Mental Health, Melbourne School of Population and Global Health, University of Melbourne.
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Recommendation 6 Care is taken to ensure the Commonwealth Government’s decision that PhaMs will be absorbed in total by the NDIS does not shift the burden for support – previously provided through this program – to families and carers of those not eligible for assistance under the NDIS.
Partners in Recovery (PIR) Supports and ‘Support Coordination’ under the NDIS Whilst trial NDIS sites have indicated that many people in receipt of PIR services have been accepted into the NDIS, Tandem is concerned that the services provided under the NDIS may not meet the needs of participants compared to what was provided under the PIR program.
Support Coordination can be included with an Individual Funded Package (IFP) plan under the NDIS, replicating, partly, the role of the PIR program to support the coordination of supports and services. The design of ‘Support Coordination’ as part of the wider NDIS architecture is inadequate for some people who will access the scheme with a psychosocial disability. As a phase out service Support Coordination is designed with the intention of building the capacity of participants to eventually self-manage their supports,
For some people living with a psychosocial disability, it may take longer that the projected 12 month until they feel comfortable and confident to self-manage. Support Coordination needs to replicate the PIR service and allow for this to be an on-going service, because an implementation as a phase out service risks an increasing reliance on informal supports. Families and carers may need to take on responsibilities to support the person they care for and manage their supports, without the PIR service to support them.
Recommendation 7 Tandem recommends that NDIA ensures the transition of services such as the PIR does not shift responsibility to families, carers and other informal supports to compensate for service gaps.
Mental health respite: carer supports MHR-CS provides supports directly for families and carers via programs including:
- Relief from the caring role either through short-term respite or through social and recreational activities
- Provision of carer support through, practical assistance, advocacy services and peer support and mentoring
- Supports through education, information and access to services is asset in obtaining referrals, improving knowledge about mental illness and improving carer wellbeing
Unlike what is being provided for families and carers through the NDIS Individual Funded Packages (IFP) or the Information and Linkages and Capacity Building Framework (ILC) the programs under the MHR:CS are all targeted at carer support services. MHR:CS service providers offer a broad range of carer support services in response to ‘carer needs assessment’s undertaken by the providers and the development of carer support plans. The NDIS, in contrast, does not offer a broad range of supports or include a carer’s needs assessment process through either IFP or through funding from the ILC. Whilst elements of the MHR:CS fall within the ILC scope, such as accessing information and knowledge to support their role, it is not yet clear for other carer directed supports, such as recreational respite activities and carer group activity wellbeing sessions.
Recommendation 8 Due to the serious limitations of carer support options for families and carer health and wellbeing included within the NDIS IFP and ILC, it is crucial that adequate funding and programs remain to ensure that families and carers are appropriately supported to maintain their own wellbeing and their caring relationship.
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The transition to the NDIS of all current long and short term mental health state and territory government-funded services, and in particular; and whether these services will continue to be provided for people deemed ineligible for the NDIS. Tandem is concerned by the impact the transition of state funded services is already having for families and carer and how this may be exacerbated after the NDIS has been completely rolled out.
Quality and breadth of services State funded organisations are raising concerns that during the early transition period they have been unable to provide the same breadth, quantity and quality of service that they offered previously due to funding uncertainties and the limitations of the pricing structures. Organisations are uncertain how this will further affect their services under the NDIS as the roll out continues. There is a high likelihood that families and carers will be severely impacted by a reduction of services, as it will require them to compensate for service gaps. Furthermore the lack of defined role of families and carers under the NDIS and lack of practical recognition through supports for family and carer wellbeing suggests a high likelihood of service gaps emerging for services that support families and carers.
The Mental Health Community Intake Service MHCSS is a central access point for people with a severe mental illness, their carers and family, and referrers seeking community mental health services. The transition of the MHCSS and how those ineligible for the NDIS will be compensated by the ‘continuity of support’ program creates uncertainty around how families and carers will supported after the transition period. It remains difficult to assess whether these services will be adequate, and what impact this will have on the level of informal support required to be provided by families and carers.
The scope and level of funding for mental health services under the Information, Linkages and Capacity Building framework. Both mental health and families and carers continue to be overlooked in relation to ILC funding. The ILC framework, including the LAC, does not have the resources, scope or capacity to deliver the services required to adequately support families and carers. Furthermore, the very minimal funding available to support families and carers through the framework arbitrarily limits they ways in which families and carers can be supported.
Projects are limited by the requirements to link supports directly to participant ‘outcomes’ and limits funding to projects that support families and carers to link the person they care for with information and supports. This represents a failure to adequately recognise the more holistic support needs of families and carers that may fall outside of this scope.
It is well documented that families seek out information about mental illness and look for support to develop coping strategies, problem solving skills and to overcome the sense of being overwhelmed, frustrated and alienated from friends and family members who would normally provide support.19 Families need interventions that overcome their higher rates of depression and anxiety, comparative to the wider population20, and support their emotional and social wellbeing. Carers and families express concern that in the absence of supports to maintain their own health and wellbeing, their capacity to provide informal supports will be reduced 21
The ‘principle of no disadvantage’ the commitment made by the government through the Intergovernmental Agreement for the NDIS Launch (IGA) that ‘no one will be worse off’ under the scheme. To ensure the commitment of ‘no disadvantage’ is in no way undermined by the limitations and lack of scope of ILC funding available to support families and carers, requires adequate State and Commonwealth funding for more holistic supports and services outside of the NDIS framework.
19 Dixon et al (2004) in Anglicare Carers: Doing it Tough, Doing it Well (2016) and The Network For Carers of People with Mental Illness (2001) Differences and Similarities in Experiences of Carers of People with Mental Illness and Other Carers. 20 Stephens et al (2011) in Anglicare Carers: Doing it Tough, Doing it Well (2016) and The Network For Carers of People with Mental Illness (2001) Differences and Similarities in Experiences of Carers of People with Mental Illness and Other Carers. 21 Psychiatric Disability Services of Victoria (VICSERV) (2015) Learn and Build in Barwon The Impact of the National Disability Insurance Scheme on the Provision of Mental Health Services in the Barwon Launch site: Key Issues for Consumers, Families and the Victorian Mental Health Service System.
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Recommendation 9 The Government honours the commitment made to the ‘principle of no disadvantage’ through the Intergovernmental Agreement for the NDIS Launch (IGA) that ‘no one will be worse off’ under the scheme, and to ensure that this commitment is in no way undermined by the limitations and lack of scope of ILC funding available to support families and carers.
The planning process for people with a psychosocial disability, and the role of primary health networks in that process. Tandem echoes the concerns of consumers, families, carers and other organisations that the Scheme’s focus on ‘individual need’ may overlook the importance of the informal care provided by families and the potential for active involvement of carers in planning and support.
Families and carers are not automatically entitled to supports within the Individual Funded Packages (IFP), rather carer support services will only be included if the participant requests funding for such services. For participants with a psychosocial disability, there can be many barriers to understanding or acknowledging the caring role taken on by family and friends due to stigma; a blurring of family roles and responsibilities; or simply different perspectives on how a person is supported. Relationships can be strained through the discussion of what supports are provided and what burden is taken on by families and friends to provide the support required. In our consultations with families and carers in the Barwon trial site, carers reported that they were unaware carer services could be requested through an IFP, as no prompts were provided in the planning conversation and the scope of the package was unclear to both them and the participant.
Recommendation 10 The planning process be amended to ensure that informal supports are adequately recognised throughout the planning process.
Planning conversations should be conducted in face-to-face meetings, not over the phone Tandem strongly advocates that all planning meetings for people with a psychosocial disability to be held face to face and not over the phone. Tandem has heard firsthand Conducting the planning conversation over the phone in the context of accounts of participants in the psychosocial disability can be irresponsible and unsuitable. current roll-out areas being unaware they had plans, as they This is problematic as it puts the participant under undue pressure, and did not understand the meaning actively excludes the family and carer from the planning discussions. For or significance of the phone many people with a psychosocial disability, their family and carer is their conversation. In some cases strongest advocate and understands the functional impact and support needs families and carers had never in great depth. been informed and were unaware that the person they support had We have also heard concerning reports of participants receiving review phone ever received a phone call. calls in which the carer and family was not involved, pre-warned or consulted.
Planning conversations should allow for the participant to be supported by family, carers, friends and other significant people Tandem has been concerned by feedback from families and carers that they, and other support people such as mental health workers, have been refused access to the planning conversations. This was well documented in the Learn and Build Barwon Report22, which explained that refusal had been justified by the Agency due to potential conflict of interest regarding choice and control. Whilst this situation is seemingly being addressed in the new roll-out sites, Tandem wishes to reiterate the importance for participants with a psychosocial disability to have support people such
22 Psychiatric Disability Services of Victoria (VICSERV) (2015) Learn and Build in Barwon The Impact of the National Disability Insurance Scheme on the Provision of Mental Health Services in the Barwon Launch site: Key Issues for Consumers, Families and the Victorian Mental Health Service System.
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as their family, carers and mental health workers present during the planning conversations so to ensure the planner is provided a holistic and true understanding of the persons support needs.
Families, carers and other people who provide ‘informal’ supports for the participant need to be heard during the planning process, either in a conversation with the planner or via the Carers Statement It is importance that families, carers and other people who provide ‘informal’ supports for the participant with a psychosocial disability are heard from during the planning process. The Learn and Build Barwon Report23 noted that families and consumers alike were concerned that the NDIS’s focus on individual need ‘would overlook the importance of informal care provided by families and the need for active involvement from carers and families in the planning process.
The family/carer perspective is critical for the participant and the planner at this Tandem has heard from stage, partially is the context of a psychosocial disability. Families and carers who families and carers that had experienced the planning process reported that they felt that if they did not they have been excluded advocate or clarify for the person they support, the plan would be inadequate. from the planning process, often as a result of ‘over Families and carers are important stakeholders, and there are a number of the phone ‘planning reasons for inclusion of carer opinions and ideas in the formulation of the IFP conversations and during plan. Families and carers have a long
face-to-face planning experience and in-depth understanding of the Families and carers are meetings through which person with the psychosocial disability, their deeply concerned that the planner was dismissive unique situation and characteristics. An the planner never asked of the family and carer and understanding of who provides informal them about their caring failed to take into account support, how it is provided, and the impact it role, what supports the critical perspectives of has on the person with a psychosocial they might need, and the family and carer. disability, in addition to how this impacts the their needs were not family and carer are crucial for the planner to
documented. formulate an optimal and meaningful plan.
The family and carer voice is crucial, in collaboration with the care recipient and professional staff, as it enables the planner:
a. To gain a holistic understanding of the support needs of the participant Participants with a psychosocial disability in some cases may not recognise or express their needs and goals. There are various reasons for this including the manner in which their psychosocial disability manifests; stress resulting from unfamiliar people and contexts; barriers felt due to associated stigma; or a reluctance to divulge personal issues. This can be a particular issue with the NDIS planning conversation as there is no opportunity to create an ongoing, trusting relationship with the planner. The importance of having ‘someone who understands’24 has been reiterated by many reports and organisations, and one we still deem as crucial to the success of the NDIS for people with a psychosocial disability.
The ‘Learn and Build in Barwon’ Report detailed these concerns about the planning process at the Barwon trial site, and Tandem has continued to hear reports from concerned carers reiterating these same concerns.25
b. To gain a holistic understanding of what informal supports the participant is receiving and their own support needs People living with a psychosocial disability may not necessarily always recognise the extent to which they are supported by their family and friends. The planning process can force an examination of personal relationships and
23 Psychiatric Disability Services of Victoria (VICSERV) (2015) Learn and Build in Barwon The Impact of the National Disability Insurance Scheme on the Provision of Mental Health Services in the Barwon Launch site: Key Issues for Consumers, Families and the Victorian Mental Health Service System. 24 Implications for family Carers when people with a disability have individualised funding packages (2015) literature review, Mind Australia and the Centre for Mental Health, Melbourne School of Population and Global Health, University of Melbourne , 51. 25 Psychiatric Disability Services of Victoria (VICSERV) (2015) Learn and Build in Barwon The Impact of the National Disability Insurance Scheme on the Provision of Mental Health Services in the Barwon Launch site: Key Issues for Consumers, Families and the Victorian Mental Health Service System.
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dependency factors that can put difficult strains on the relationship participants have with their families and friends. It is important to ensure that the family, carers and other informal supports are heard from during the planning process, either through attending a planning conversation with the participant, or via a separate conversation or Carers Statement. This is crucial for the planner to plan appropriately, and to ensure that the supports provided informally are ‘reasonable and sustainable’.
c. To have an informed understanding of the family and carers’ capacity and willingness to continue to provide support in the same way The capacity to provide informal support differs from person to person. Whilst some families and carers feel confident and comfortable that they have the skills, time and knowledge to manage and provide supports, other do not. Similarly, many families and carers are providing support for numerous family members with differing needs. Planners should never assume the capability and willingness of the family and carer to provide supports. Participants and their families and carers may prefer the support is provided in alternative ways than it is currently, and the planner is required to understand this, build the appropriate supports into the plan. When creating an individualised plan it is crucial that the planner understand the capacity, willingness and capability of families and carers to provide informal support.
d. To ensure informal supports remain reasonable, families and carers receive the supports they need, and pressures on families and carers are not exacerbated by the NDIS process Direct feedback from families and carers indicates that the NDIS has not lessened their workload via ‘indirect supports’ as projected. Rather it has merely shifted how they provide support. Families and carers feel that they are not getting respite as they are helping person get ready, prompting and providing emotional support, completing paperwork, and helping the person they care for engage with workers.
This can only be improved by improved planning process that truly recognise how the family and carer provide support and the complexities of psychosocial disability and how this can be addressed and managed through supports included within the plan.
e. To ensure structures and processes are set in place with the family and carers, so that they can step in if the participant becomes unwell and disengages from NDIS services Active inclusion of families and carers in the planning process is crucial for future planning around risk associated with episodic mental illnesses. The planning process currently lack capacity to adequately prompt or develop Emergency Care Plans to be implemented when the participant becomes unwell. In our consultations in the Barwon trial site families and carers reported their family member having a plan that was not being implemented due to the participant no longer having the capacity to activate it. Creating IFP plans for people with a psychosocial disability requires planning for situations such as these. Planners need to invite participants and their family and carers to develop Emergency Care Plan (whether this be through the Nominee Process or otherwise), that will be acknowledged and respected by the NDIA and services to detail family/carer involvement in managing services, communications and care when the participant becomes unwell.
Recommendation 11 Planning meetings with those with a psychosocial disability and their families and carers be held face-to-face wherever possible or families and carers routinely be invited to provide a Carers Statement.
Recommendation 12 All planners are trained to understand the principles of family inclusive practice to ensure carers are able to validate their roles as collaborative partners.
Families and carers needs assessment The Planning process currently includes no formal family/ carer needs assessment26. In absence of this the onus falls to the participant and their family or carer to adequately communicate the family and carer support needs. This also
26 Hamilton, Giuntoli, Johnson & Fisher, (2016) in Anglicare Carers: Doing it Tough, Doing it Well (2016) and The Network For Carers of People with
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creates a risk of the planner creating a plan that is built on the assumption of, or reliance upon the informal support ‘ of family and carers.
Whilst there is scope for families and carers to be funded for supports through the IFP this is under the discretion of the participant. This requires both the family or carer and participant to have an informed and examined understanding of the support needs of the family/carer. Placing the onus on the family/carer and participant to examine and detail their caring relationship can have negative implications on the relationship of the participant and their family, and create a risk of families and carers not accessing the supports they require.
Family members and carers of NDIS participants (particularly of young children) reported that their own needs and the needs of the family more broadly were not addressed in the planning process. Families and carers focused on the empowerment of their family members and advocating for their support needs at the expense of addressing or voicing their own needs.27
In the United Kingdom, a carer needs assessment has been formalised through the UK Care Act that distinguished between the support needs of the care recipient and the carer. Disengaging the carers need from the carer recipient recognises that families and carers have needs that are not directly linked to the ‘outcomes’ of the person they support, and also works to validate the caring role28.
Recommendation 13 Tandem recommends the NDIA adopt the United Kingdom model of formalising a carer needs assessment distinguishing between the support needs of the care recipient and the Carer. This approach powerfully validates both the importance of the Carer role and that families and carers have needs that are not directly linked to the outcomes of the person they support.
Families and Carers Separate Planning Conversation/ Carers Statement
Tandem recommends that families and carer should be entitled to and offered a separate conversation with the planner or to submit a Carers Statement if the family and carer deem it necessary. Families and carers are reporting circumstances where they felt as if they could not ask for a separate conversation and felt reluctant to talk candidly in front of the person they support during the planning conversation, especially when they were asked if they were ‘willing’ to continue providing support29. Examining and unpacking the ways in which the family or carer are impacted by the caring responsibilities they take on can negatively impact the relationship between the care recipient and caregiver, can may make some people uncomfortable and unable to express everything they need to say.
Families and carers need to have a private and safe platform to have their voice and perspective heard to enrich the planners understanding of the participant’s life and support needs.
Families and carers of people accessing the NDIS due to the impact of the psychosocial disability need to be able to provide the planner this information, to be interpreted and integrated into the plan at the planners informed digression, without barriers or limitations. This is very important, and should be accepted for consideration in the same manner in which clinical recommendations and other third parties are by planners.
Planners need to be skilled and informed about psychosocial disability and mental illness in order to:
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Appropriately plan for and consider the future needs of participants and the family and carers, especially for episodic conditions.
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Identify behavioural changes and regulate the mood of the participant during the conversation. Mental Illness (2001) Differences and Similarities in Experiences of Carers of People with Mental Illness and Other Carers. 27 Mavromaras, Moskos and Mahuteau (2016) Evaluation of the NDIS: Intermediate Report National Institute of Labour Studies, Flinders University, Adelaide, 119. 28 Anglicare Carers: Doing it Tough, Doing it Well (2016) and The Network For Carers of People with Mental Illness (2001) Differences and Similarities in Experiences of Carers of People with Mental Illness and Other Carers. 29 Implications for family Carers when people with a disability have individualised funding packages (2015) Literature Review Mind Australia MIND Australia and the Centre for Mental Health, Melbourne School of Population and Global Health, University of Melbourne.
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- Understand psychosocial disability in terms of functional impact and episodic change, rather than simply diagnosis, and individualise plans in response to variables in symptoms etc. Due to a lack of insight of mental illness and psychosocial disability from planners, carers believe that gaps are forming during the planning process. For example, planners are forgoing questions such as ‘what supports do you require on your worst days’ for questions such as ‘where do you want to be’. This is resulting in gaps in the plan.
If a planner is does not have a holistic and informed understanding of the support needs and functional impairment associated with various psychosocial disabilities the package will be unsuitable, shifting the burden to families and carers to ensure the person they care for receives support.
Planners need an understanding of family inclusive practice Without an inbuilt family and carer needs assessment model, there is a requirement for planners (NDIA and LAC) to have practiced knowledge of processes to identify and include family and carers throughout the NDIS processes. Inclusion of families and carers in the planning process as collaborative partners validates their role, ensures they are receiving the support they require within the plan and will result in plans that are more appropriate and individualised for the NDIS participants30.
Administration demands and heightened workloads for families and carers Families and carers are concerned by the increase in workload under the NDIS with relation to increased paperwork, coordination of services, chasing up of clinical services and coordinating with the NDIA during through the NDIS access and planning processes. This has been a major stressor for families and carers raised often in community consultations and through direct feedback.
Tandem is concerned that the ‘burden of proof’ is placed on families and carers who need to undertake the task of evidencing a formal diagnosis or organising detailed functional assessments on behalf of the potential participant
Families and carers have described the access process in proving eligibility requires them to ‘be a squeaky wheel and keep calling them to make anything happen.’ Some carers felt the process and level of follow up needed has adversely impacted their own mental health.
Families and carers provide enormous support for those they care for, but this support ought not be assumed, relied upon or beyond what is reasonable, to ensure families and carers are capable of maintaining their own wellbeing.
Recommendation 14 Measures are put in place to ensure that families and carers are not carrying the ‘burden of proof’ for eligibility for the NDIS for the person with a psychosocial disability.
The role and extent of outreach services to identify potential NDIS participants with a psychosocial disability. Dependency on family and carers The current outreach system is highly dependent on the informal work of families and carers to engage participants. This is particularly evident for potential participants who are living with a psychosocial disability who are dis-engaging from the process due to being unwell, being misinformed about the NDIS and differing perceptions of their situation.
During consultations with families and carers in the roll out area, a carer raised concern for her daughter who is potentially eligible for NDIS supports but who does not perceive herself to be unwell and therefore does not see the need for support or need for engagement with the NDIS. Her mother was distressed that there was no service or NDIS representative to engage her daughter in the scheme.
Families and carers are also reporting cases of the person they care not responding to phone calls from the NDIS because they do not recognise the phone number, are disinterested with engaging with the NDIS or do not realise that
30 See Harper et al (2013); Moule et al (2014; Berk & Berk (2015) in Anglicare Carers: Doing it Tough, Doing it Well (2016) and The Network For Carers of People with Mental Illness (2001) Differences and Similarities in Experiences of Carers of People with Mental Illness and Other Carers.
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this is part of the NDIS planning process. As there are limitations on how active service providers can be in linking potential participants, this places the responsibility to families and carers to link people to the NDIS who are resistant to engage with the scheme, unwell or difficult to reach.
We have spoken to families and carers in the Barwon trial site whose family member have received a plan, but who have since become unwell and are unable to activate their plan or access services. In these cases, the participants had not been contacted by NDIS or LAC to re-engage the participant. There is a serve lack of follow up or outreach services with the capacity to contact even those already within the system. This was causing great distress for families and carers, who (due to being unaware of the Nominee process during the Access and planning stages) were unable to activate the plan on behalf of their family member.
Recommendation 15 All participants, families and carers are informed of the process for either identifying or becoming a nominee during the access and planning stage. This would allow the participant, family and carers to agree to the circumstances where families or carers can assist with decision making (should the person they care for become unwell) to reactivate their NDIS supports.
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