Victorian mental health carers in the NDIS
Issues and Recommendations
Briefing Paper Supplement (March 2019)
Tandem Inc. Representing Victoria’s mental health carers
In Victoria, Tandem has heard first-hand of the experiences of the NDIS for mental health carers, through consultations, providing community information sessions, one on one support and referrals through our 1800 NDIS line. Based on the evidence we have collected from mental health carers and information presented in the Mind the Gap: final report, Optimising Support for People with Psychosocial Disabilities Participating in the NDIS Literature Review, we present here the recurrent issues and put forward some further recommendations.
Tandem acknowledges the support
of the Victorian Government.
About Tandem
Who we are
Tandem is the Victorian peak body representing family and friends supporting people living with mental health issues.
What we do
We advocate for family and friend involvement in planning and care, participation in system change and support. Who is a carer?
We promote and support the development of the Mental Health A carer may be, and will continue to be, primarily the person’s wife, husband, partner, son, daughter, parent, neighbour, friend, … their child or children. It doesn’t matter how many hours are spent each weekWe promote and collaborate on the delivery of training on family inclusive practice for mental health professionals.
to be, primarily the person’s wife,
husband, partner, son, daughter, parent, neighbour, friend, … their child or children. It doesn’t matter how many hours are spent each week providing support. Carers may live inclusive practice for mental health professionals.
We provide information, education and training to family and friends providing assistance with daily needs, supporting people with mental health issues. or may visit the person regularly. Carers are people who invest time,
We support and advocate for the diverse needs of family, friends energy and support, generally in an and other supporters of people living with mental health issues. unpaid capacity. However, some may receive Centrelink benefits to enable them to continue in their caring role. Carers are often hidden…. Children who become carers face particular difficulties in being recognised and having their needs met. In culturally We administer the Carer Support Fund which provides financial diverse communities, care may assist to carers of people registered with Area Mental Health involve the entire community and Services in Victoria. to be, primarily the person’s wife, husband, partner, son, daughter, parent, neighbour, friend, … their child or children. It doesn’t matter how many hours are spent each week providing support. Carers may live with the person they are caring for, providing assistance with daily needs, or may visit the person regularly. Carers are people who invest time, energy and support, generally in an unpaid capacity. However, some may receive Centrelink benefits to enable them to continue in their caring role. Carers are often hidden… Children who become carers face particular difficulties in being recognised and having their needs met. In culturally diverse communities, care may involve the entire community and may provide additional challenges during the process of identifying who is a carer. We administer the Carer Support Fund which provides financial assistance to carers of people registered with Area Mental Health Services in Victoria. may provide additional challenges during the process of identifying who is a carer. Tandem’s members include family and friends (carers and former Adapted from A Practical Guide carers), regional carer networks and support groups, organisations for Working with Carers of People with a significant mental health focus, and those working in the sector. with a Mental Illness, p.6
Details
For more information about this submission please contact:
Tania Curlis
Position in organisation: NDIS Engagement Consultant Mobile: 0419 408 468 Email: tania.curlis@tandemcarers.org.au
Tandem Inc., Level 1, 37 Mollison Street, Abbotsford 3067 Telephone: 03 8803 5555 Fax: 03 8803 5599
Recommendations
In response to the experiences of mental health carers of the NDIS, we propose the following recommendations:
- Train Planners (NDIA and LAC) in culturally-aware, family inclusive practice.
- Provide carer advocacy in NDIS preparation, planning and review, and training for carers in self-advocacy.
- NDIS policy for active encouragement of family and carer inclusion at consultations and reporting on the level of engagement of carers in the planning process.
- NDIS policy to ensure carers can apply for NDIS on behalf of a family member where supported decision making is appropriate.
- Ensure adequate allied health skills in support coordination. Reduce regulatory barriers to registration for provision of allied health services across NDIS.
- Provide support coordination in all NDIS plans for participants with psychosocial disability.
- Provide sufficient Capacity Building hours to establish a recovery-oriented approach to services.
- Provide a clear rubric to inform when Specialist Support Coordination and the Complex Support Needs Pathway may be called upon.
- Provide clearly defined and transparent protocols and practice guidelines for working with NDIS participants with psychosocial disability and their carers for the NDIA, LACS and NDIS providers. Improve speed of response in acute circumstances. Provide written responses including a rationale for decisions made.
- Provide NDIS Carer Statement template on the NDIS website that enables mental health carers to identify the support they provide in NDIS eight areas of support.
- Adequately compensate allied health and medical staff for NDIS documentation and administration and clarify the scope and requirements of these roles. Provide fit-for-purpose standard templates for the psychosocial stream.
Victorian Mental Health Carers in NDIS
Challenges and issues identified by mental health carers as they engage with the NDIS
‘The whole area has been thrown into disarray. Community Mental Health has all gone in our area. Mind has about a 3 month waiting list, and Wellways – I’m playing phone tag. I don’t know who the new providers are. It’s a mess.’
Families and friends of people with psychosocial disabilities in Australia face multiple disadvantages. This is made worse through the approach to service delivery of the NDIS. With community mental health supports dismantled to make way for the NDIS, and limited existing mental health infrastructure in Australia, current systems are strained. Historically there have been limited options for support. Individuals with mental illness and their families have no frame of reference for the types of activities or supports they might engage within NDIS and are thus disadvantaged in their self-advocacy. As compared to NDIS plans for people with a physical or intellectual disability, people with psychosocial disability receive markedly less capacity building supports in a plan, in spite of potential benefits toward recovery-oriented goals.
Overwhelmed with day to day operational demands of life with mental illness, families also provide unpaid and unrecognised administrative support for NDIS alongside their practical caring role. Families act as advocates and administrators for months on end. This is maintained beyond the access process, at points of review. Families are negatively impacted by limits to staffing and a lack of skill with psychosocial disability within Local Area Coordination and the NDIA.
Families are struggling to understand the NDIS. Further investment toward support to prepare for the access process as per the Mental Health Australia Optimising Psychosocial Support report would greatly assist families.
The design of the NDIS prioritises the rights to an ordinary life for a person with psychosocial illness, but what of the right to an ordinary life for the carer?
‘Supporting my son in the NDIS is the equivalent of running a small business in the background of my life.’
Healthcare outcomes of a person with mental health issues are linked to the capacity of a family to advocate and speak up. The NDIS has compounded this. (Olasoji, Maude & McCauley, 2017) When writing a Carer Statement to represent their own needs in an NDIS plan, carers have expressed shock in recognising the extent to which they carry the administrative and coordination role and prompting role with/for a family member. There has been no demarcation of the role of unpaid family supports, and the role of mental health carers. It is not sustainable for families to be expected to hold this degree of oversight within the NDIS indefinitely.
In communication within an NDIS planning or review meeting, a carer will need to retell the story of family illness, which can trigger grief, loss, and overwhelm. There has been no explicit outline of the purpose of a carer statement and how it is used within the NDIS process to inform the outcome of a plan. They must again recite barriers and challenges experienced as a family. This has an impact of retraumatising families and can have unintended consequences on the relationship with their family member with psychosocial disability.
It would be helpful for carers to have greater understanding about how this information is used to inform funding provided within an NDIS plan. It would also be helpful for carers to be more directly catered to within a plan, in recognition of their role. Where a person lacks insight into their level of mental health challenges, the NDIS should accept a direct application from families as an act of supported decision making, to sustain and supplement their role.
There is a continued need for intensive preplanning support. One example in Victoria is the ILC funded DHHS NDIS Access Project focussed on supporting evidence gathering for at risk, hard to reach groups. These groups require assistance naming the barrier and impacts of their experience in ways understood by planners. A further three years of community advocacy and administrative support in transitioning consumers and services has been discussed at the hearing as an important measure.
Victorian mental health carers in the NDIS: Issues and recommendations
May 2018
Families are distressed to find the scheme is not fully operational, with limited services available to meet their needs. There may be limited or no choice of provider in regional areas. There is a case for adapting the NDIS model to expand on outpatient services of regional local hospital or health services where it would not be viable for a private provider to eestablish services. This is a longstanding issue; scaling up a market response may not ever be effective in such locations.
Case example:
An elderly couple shared the challenges of having a daughter with schizoaffective disorder, who had a compulsory treatment order overruled, and who was sent to live with them. In the absence of clinical support, and no care support in their own right including no succession planning for the care responsibilities for their daughter, they presented as incredibly distressed and overwhelmed and unable to navigate this new NDIS system on their own. A family such as this may benefit from the Complex Pathway but may still not identify how their own needs could be supported or know how to effectively advocate for their daughter’s needs within the NDIS. Trained planners with an understanding of family-inclusive practice could assist this couple to utilise supports within the NDIS for their daughter.
Successful vs. unsuccessful plan
‘It feels like an autopsy, but if you don’t do that, people won’t understand.’
Carers describe a burden of responsibility for the success of an NDIS plan laden in their ability to plead their circumstance. Some organisations are instructing their workforce to prepare their consumers and families in the way they might support them with a legal case, including considering support and engagement before and after a planning meeting that accounts for the extreme stress of this level of personal exposure. Those who cannot identify evidence requirements through reasons of socioeconomic disadvantage, cultural or language barriers are disadvantaged in this process; they will not recognise that a successful NDIS application relies upon a perfectly worded document or recognise how to seek revisions of language from a professional team.
Consumers rejected from the NDIS including those who have been assured continuity of service from previous community health services. Inconsistencies in how access requirements into NDIS are applied result in two individuals with comparable diagnoses and challenges having different plan outcomes; one not accepted into the scheme while the other has a reasonable level of resources within the package. This inconsistency is unethical and requires investigation.
Some organisations have openly asked Tandem whether it may be reasonable to not name that the family supports the person in any way, and in so doing try to increase the likely package of funding. The interdependence of mental health families is little understood and at once family members have identified feeling needed but excluded, useful but in the way. Families are drawn in and out of a care team and a person’s support system at the whim of professionals and government systems. Carers have described feeling no safe ground under themselves, as their own needs for their life and self-determination are set at odds with requirements of their role in supporting others in the family when health systems require this.
A lack of overall community literacy around mental health, and stigma and bias against this group, is impacting ways in which the NDIS is applied to mental health. Plans loaded up with core supports are keeping people in situ in a stagnant life, without the level of capacity building supports such as therapies to build on personal recovery goals in a meaningful way. These plans are frequently not fit for purpose.
Self-advocacy requirements
Individuals with psychosocial disability can rarely independently outline the range of supports required to maintain their wellbeing. People with psychosocial disability were identified across a range of literature and evaluations of the scheme to be “particularly struggling with the complexity of NDIS processes and documentation.” (Kaplan & McGrath 2018) State funding exists to address the needs of transition such as the DHHS Access team, and the Transition Support Package community education roles. These have a defined timeframe and will cease operation in the next 12–18 months. Federal ILC funding initiatives to bolster self-advocacy capacity do not have ongoing stewardship arrangements to ensure materials are updated regularly once in the public domain. Materials such as reimagine.today have been useful to convey the benefits of NDIS for this group, but have been under-utilised. These education approaches do not directly address the design flaws and complexity that will create ongoing barriers to participation for this group.
Victorian mental health carers in the NDIS: Issues and recommendations
Families represent their family member’s needs within the NDIS planning meeting through outlining direct supports they undertake which may instead be taken up by a support worker, community activities and group programs, and therapeutic intervention (see appendix). This is an indirect way of communicating carer need that would only be understood and taken up by the most skilled or resourced carers, as it is not explicitly stated within scheme design. As the onset of mental health is incremental, families may not readily identify the tremendous work they undertake which is different to the role other families may play at that developmental phase in a person’s life. Self-advocacy skills vary greatly. Many families supporting a person with psychosocial disability are ageing carers and have been marginalised through inadequate mental health systems for decades.
Carers have shared they may need to repeat themselves a number of times to be understood, and LAC have admitted their staff often bring a limited understanding of this space. Carers are frequently desperate for any support, and as such, may present as compliant and ‘grateful’. Where shame and social exclusion exists, including in complex or some multicultural settings, families may be embarrassed to be sharing such pointed details of their life. For these reasons, Tandem have recognised a need for greater family advocacy. The recent ILC funding toward self-advocacy skills may go some way towards assisting this area, however carers frequently still require direct advocacy support.
Families are reporting unsustainable workloads, and burnout. Increasingly as there is no provider of last resort yet established in the state, clinical services are seeing CCU and SECU accommodation services utilised by dual disability patients with challenging behaviours, reducing the accommodation available to mental health clients. The mental health system is increasingly at a crisis point holding the impacts of NDIS delays. There are no alternative community health services to refer families to once a person in their care is linked to NDIS.
What support is available?
The Psychosocial Pathway is targeted to participants and is still rolling out. It does not attend to the needs of carers in their own right. It is unclear who might be appropriate for additional supports such as the Complex Pathway, or Specialist Support Coordination. Carers still face long wait times in dealings with NDIA, and difficulties having risks and urgency understood.
Case example:
A carer disclosed she is still waiting for a ‘soft touch review’ to correct an NDIA error made when the plan began. Her child’s Support Coordinator could not be paid with a 5+ month wait for resolution. In the interim, Support Coordination is not available. The carer has contacted the agency multiple times. No timeframe for resolution has been provided. If the matter is not resolved before a plan review, she may be perceived as a carer who is not in need of these resources, as she did not spend them. This would not accurately reflect the circumstance and would provide increased strain in a second plan. She manages an NDIS support worker and therapeutic team of 6+ people, separate to the clinical case management team, while supporting other children and working as a single parent. Prior to Tandem engagement, no worker had suggested referring to higher level supports within the NDIS.
Workforce skill gaps
Within planning: Evidencing ‘enduring mental health issues’
By necessity, families become educators of the workforce. This places long-standing relationships with medical professionals at risk, as families repeatedly request updated reports with language of deficit to fit the NDIS approach. General Practitioners may refuse to assist further; they have no appropriate Medicare line item to charge for reports required by NDIA. Families find themselves in a position of having inadequate evidence for a claim.
Mental health clinical teams are still learning about the NDIS; evidence required for planning and review is at odds with clinical traditions of report writing. NDIS Planners and Reviewers struggle to comprehend reports within their work timeframes. More support could be provided through templates to enable the healthcare workforce to link evidence to NDIS goals in ways acceptable to the NDIS.
Workforce are at a point of burnout coping with changed language, processes, and dealing with increasingly acute situations without required resources. There is inadequate support and supervision to low-paid support workers, many
Victorian mental health carers in the NDIS: Issues and recommendations
May 2018
Within implementation: human resources expectations
Upon plan implementation, families are called upon as a human resources department to hire and induct staff and oversee the scheduling and rostering required for a family member.
The requirements to list tasks across a day would best be outlined by a professional in the care team, such as an Occupational Therapist, Social Worker or Behaviourist, in order to establish recovery-oriented practice goals.
Plans for people with psychosocial disability are frequently lacking the required amount of Capacity Building supports to enable this, and many plans contain less than 40 minutes of support coordination per week to facilitate planning. (Rosenburg 2019)
Families have spoken of a lack of choice of hours of support staff attending - seeking a Monday and Friday, for example, and being advised they can only receive service on a Tuesday. The degree of negotiation and forthright approach required to put in place a week’s support for a family member is emotionally taxing. Some have described the lack of choice and control as an experience of feeling bullied into options that best suit the provider.
Families talk of months of waiting for an NDIA response and frequently relying upon a local Member of Parliament as a lever to access timely NDIA communication. Tandem has heard examples of a person being advised that they are accepted into the scheme, and then in the same week, being advised that this was an error based on another person’s evidence. Consumers are being left at risk without supports for extended periods including in our experience where there is a risk of falls, coma, self-harm or risk of harm to others. Improved policies and transparency about practice decisions within the NDIA is required. A lack of timely response is putting young people in early psychosis at risk of relinquishment, and older adults at risk of homelessness.
Frequently individuals are now provided only a 6 month plan with the expectation that they will again gather further evidence in another 6 months.
Depending on the complexity of the family circumstance, coordination and ongoing advocacy can amount to 15-30 hours a week of administrative oversight, even with support coordination in place.
This is additional to direct support provided each week to the person with psychosocial disability. Families speak of not coping with operational demands day to day, alongside the administrative burden of multiple health systems.
Templates for evidence gathering for clinical services and professionals within the care team would speed linking possible goals within a plan to an individual’s difficulties and clearly denote impacts of psychosocial disability
NDIS templates for a Participant Statement and Carer Statement to outline information would be useful for planning and review, with a further explanation of how this information will inform a planning decision
Greater guidance over NDIS allocation of resources toward Support Coordination, Support Connection, and Specialist Support Coordination would be useful to improve overall administration support to families. It would also assist to increase transparency to enable families to make reasonable requests for assistance in their discussions with planners and reviewers.
An ordinary life?
‘It is 30 years since the closure of Australia’s mental health asylums and we still lack a network of community services designed to permit people to live well and with dignity in the community. The role of the NDIS in Australia’s continued evolution towards recovery-oriented community services is unclear. There is doubt about who should be responsible for
providing psychosocial support for complex cases… we cannot permit the NDIS to simply be a place for a small number of people to go and rest between crises.’(Rosenberg 2019)
The NDIS is framed around supporting individuals with disability, including psychosocial disability, to live an ‘ordinary life’. It relies upon families continuing in the provision of unpaid ‘informal care’ while marketing that the design will (enable carers to return to work. In truth, as reported in The Conversation, ‘[f]ewer than half of carers of people with NDIS packages are in paid work’. (Hamilton, 2018)
We have arrived at the very point of social policy once feared: ‘As the gap grows between what people with a disability and family carers need and the support that is available, it is possible the needs of carers could be increasingly pitted against the needs of people with a disability in funding priorities to no advantage of either group.’ (Carers Victoria, 2010)
Appendix: Summary of key issues within the role of mental health caring
The Impact of mental health caring on families and carers
Carers aren’t coping
It is well documented that families supporting a person with mental health issue experience higher rates of mental and physical health problems than the general population. Without appropriate supports for carers, and balance with the needs of other family members, their role is unsustainable (Llewellyn 1996). Supporting a person with mental health issues has also been found to lead to family and relationship breakdown.
The Australian Institute of Family Studies report into the impact of caring for family members with disability in Australia (2008) found that one in five carers have no assistance from other people in their caring role. One in three carers identified conflict in family functioning as a problem, and this was more marked for carers of a person with mental illness.
Almost one in three participants in the study under age 50 separated or divorced since they started caring. One in seven carers over the age of 50 had separated or divorced since they began supporting someone.
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What does mental health caring entail?
The ‘emotional support’ role of mental health carers is poorly understood. Emotional support includes every day practical engagement - encouraging or reminding a person to shower, to start the day, to get out of bed to eat regularly and more complex responses and management of feelings, thoughts and behaviours that prevent the person from engaging with a wider social world. Such emotional work has been identified in emerging research as including the following:
Coaching & motivating in everyday life – reasons to get out of bed, (have a shower, get dressed, eat, rest etc.)
Behavioural management & support – de-escalating distress, anxiety, disordered thoughts, negotiating maladaptive ‘self-soothing’ behaviours Eg. self-harm; drug use & addiction,
Medical management –checking/reminding medication; appointments; organising admissions; planning and care team; crisis response plan or attempts to plan
Cultivating & curating identity - memories & values & interests, social relationships
Navigating & preventing - suicide, addiction, homelessness (fear of/threat of)
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Reference list
Australian Bureau of Statistics (2015) Survey of Disability, Ageing and Carer
Carers Victoria (2010) The next steps: adults with a disability and family carers
Carers Victoria (2017) Impact of caring
Commonwealth of Australia (2018) response to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) report: Provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition
Deloitte Access Economics (2015)
Groch, S., (2018). ``Good intentions’’ of NDIS lost to bureaucracy as Canberrans struggle’’, The Canberra Times.
Hamilton, M., (October 2018) ``The NDIS hasn’t made much difference to carers’ opportunities for paid work’’ in The Conversation. Available at: https://theconversation.com/the-ndis-hasnt-made-much-difference-to-carers-opportunities-for-paid-work-98157
Hancock, N., Gilroy, J., Llewellyn, G., Yen, M. I., Well, M., Works, M., & Laurence-Karingal, S. (2018). ``Mind the Gap: NDIS & Psychosocial Disability, The Victorian Story.‘’
Kaplan, D., McGrath, D., (2018) ``Optimising support for psychosocial disability within the NDIS’’ Literature Review.
MacDonald, F., Charlesworth, Sarah ``(2014) Cash for care under the NDIS: Shaping care worker conditions’’ Journal of Industrial Relations (0) 1 – 20
Manning, J., (Feb 2019) DARU “Sharkie calls for NDIS Planning Review” Available at: http://www.daru.org.au/resource/sharkie-calls-for-ndis-planning-review
Mavromaras,K., Moskos, M., Mahuteau, S., Isherwood, L., Goode, A., Walton, H., Smith, L., Wei, Z., and Flavel, J., (2018). Evaluation of the NDIS Final Report.
Mental Health Australia (2018) National Disability Insurance Scheme: Psychosocial Disability Pathway
Mind Australia (2017) The economic value of informal mental health caring in Australia
Morton R. Mental health in NDIS a ‘mistake’, says Patrick McGorry. Sydney: The Australian; 2017 Apr 6 [cited Feb 2019 in Rosenberg et. al]. Available in: https://www.theaustralian.com.au/national-affairs/health/mental-health-in-ndis-a-mistake-says-patrick-mcgorry/news-story/7ad228fc1067ff76f0a0c961a6dc1618
Olasoji, M & McCauley (2017) ``Not sick enough: Experiences of carers of people with mental illness negotiating care for their relatives with mental health services’’
Rosenberg, S., Redmond, C., Boyer, P., Gleeson, P., Russell, P. (Feb 2019) “Culture clash? Recovery in mental health under Australia’s National Disability Insurance Scheme - a case study”
Sheen, C; Vueti, S & Kelly, L , (2017) ``Is the National Disability Insurance Scheme supporting unpaid carers of people with a disability?’ Carers Act Ltd
Tandem Inc. (2018) Victorian Mental Health Carers in the NDIS - Issues and Recommendations
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