I am an unpaid carer. Despite my lived experience of over 25 years and also working in primary and tertiary mental health services for the past 17 years, I am not currently affiliated with any mental
health organisation and thus often do not get notified of any opportunities to provide
contributions/feedback/suggestions and my opinions are often undervalued. In October 2017 I was appointed by the SA Mental Health Commission as the only unpaid carer in the planning of the TheMHS conference in Adelaide in 2018. In July 2018 I suggested we have a speaker at the carer forum of the conference regarding the NDIS. When this was dismissed by a Commission staff member, stating that carers do not want to know about the NDIS, I made an official complaint. I was offered mediation by a commission staff member and when I refused the involvement of a Commission staff member as the mediator as they had been directly involved in my complaint, I was removed from the committee. I applied to contribute to the Mental Health Services Plan, however these applications were addressed to the SA Mental Health Commission, so it was not surprising that I was not offered a place. It was only through LELAN that I became aware of the NDIS inquiry and now make this submission.
My brothers have been working towards recovery for 27 years. Our family has been working towards recovery for 27 years. My two brothers have been diagnosed with Schizophrenia. They are strong, resilient, patient and I admire them. They are prescribed medications which have terrible side effects, including the development of diabetes. One of my brothers does not talk as he was assaulted by police a number of years ago - for simply running away as he did not want to be detained involuntarily. He has learnt from this traumatic and unfair treatment that it is safer to not speak up. He has multiple
support workers come into his home EVERY day, some of whom are strangers, and he is
understandably not very happy about this and often runs away when people enter his home. However, he is given no power to choose his own workers to help him administer his diabetes medication. Peter sustained a head injury in 1991, the event which triggered his mental illness, and through no fault of his own but rather due to the lack of support he is given, Peter is very early in his recovery journey and has a tough time taking care of himself and has a tough time learning new things and cooking and shopping for himself and getting organised. He has no power and he is not given support nor advocacy to make decisions for himself. The only power and control he has in his life is the $30 he receives every day, which he currently uses to buy cigarettes as this makes him feel good and provides a daily activity for him. Surrounded by service providers that he has NOT chosen, he is understandably not in an environment that motivates him.
Sometimes Peter and I aren’t quite on the same page. I’m his younger sister, and a psychologist, god forbid, what would I know? Also, we just want to be siblings, so sometimes I won’t ask or nag him about his blood sugar levels, but rather I will just say hello or give him a hug. However, it is so difficult and almost impossible for me to stand by and watch the atrocities that are committed against him by the mental health system, and the resulting consequences that they have on him and his life. For example, friends not visiting him, extended family not visiting him, the community rejecting him, and service providers not being willing and able to spend time with him, sit with him, get to know him, and help him find hope and meaning in life. It makes me so so sad and upset. I worry too about those individuals out there that are in similar circumstances, but have no family or friends advocating for their rights.
Australia’s Fifth National Mental Health Plan priorities include providing integrated and coordinated treatment and supports for people with severe and complex mental illness. What a joke! The SA Mental Health Commission has developed a wellness plan for the state, however there has been very little focus on those with severe and persistent mental illness, as there is with other mental health commissions across Australia. Indeed, when we made a complaint once to the Commission regarding a lack of services for Peter, we were told that they do not handle individual complaints, even though
it was related to an issue that many with severe and persistent issues experience on a regular basis. Peter is involved with 7 agencies, and we as a family ensure that regular meetings are held between
the organisations (our Local Health Network, Public Trustee, Royal District Nursing Service, Partners
in Recovery, GP, Neami National, Uniting SA) to prioritise working together, however at least one of the agencies is an apology for each meeting, and they rarely talk between meetings. Peter previously received a HASP package, but due to the block funded organisation putting his life in danger, we were able to transfer his care to Uniting SA, with a guarantee that the funding would follow him. However, this did not occur, and Uniting SA have been supporting him three times a day for 7 days a week on meagre IPRSS funding.
Psychosocial interventions, not medication, should be the first line treatment of mental illnesses, however currently these are very poorly funded, with a focus on acute, crisis care, rather than community care. Human rights and social justice also need to be the core business of mental health services. The focus overall in SA needs to change from costly hospital-based care to regular community support at a true person-centred level. Rather than a crisis driven approach which focuses on providing medication and involuntary treatment once a person has become very mentally unwell, a person should be assisted to overcome challenges and barriers in their life and work towards recovery and the avoidance of relapses from the very first contact with a primary health care provider.
There is a HUGE gap between the NDIS and another Commonwealth scheme - Better Access.
Individuals can only access 10 psychology sessions per calendar year and yet they can see a psychiatrist 50 times a year. If a person can get in to see a Psychologist, there are usually very large gaps for the client to pay. This will mean that those who are ineligible for the NDIS will continue to need access to acute hospital care as they will continue to become unwell when there are not enough services to support them. One of my brothers saw a Psychologist a few times in the community and was never followed up, and my other brother has never been offered psychotherapy in the community to deal with the initial trauma which triggered his mental illness, nor to deal with the ongoing trauma that he has experienced over the years including assault by police, involuntary detentions and seclusion in locked psychiatric wards, and the ongoing grief he experiences due to lost opportunities in his life.
We need a register of bulk billing GPs and allied health professionals for the public to have access to no cost mental health services. Specialist disability services, such as Adelaide Disability Medical Services in Mawson Lakes are under threat, despite the service providing a unique and assertive service for those that experience mental illness and disability issues. It is vital this service continues and is in fact, extended.
The NDIS is the light at the end of a very long and turbulent tunnel. People that have not previously received any services are now receiving support. A working alliance is a good predictor of outcome. With the NDIS there is a greater connection between providers – there are better links being seen between NDIA and government organisations now than ever before. For a participant, because of the
ability to choose whomever you like, it provides the best chance of establishing great
therapeutic/working alliances with service providers.
However, there are many improvements that need to be made with reference to psychosocial disability and the NDIS.
The waiting times for eligibility are HUGE. We applied for my brothers to access the NDIS in October
- They were deemed eligible in January 2018, but still have not had their first planning meeting. There needs to be greater flexibility in times support is available including evenings and weekends.
There needs to be funding for advocacy within the NDIS. People need much more support and access to advocacy and supported decision making especially in times of crises and distress and particularly
if they are acutely psychiatrically unwell and have lost touch with reality and do NOT want to go to hospital as this is traumatic and they are frightened for their life whilst there. So often, when a person has a severe mental illness with associated psychosocial disabilities, it is the family who will make the NDIS application. This needs to be acknowledged and they need to be supported.
Consumers and carers need assistance in describing the daily needs of the consumer. How do they express that the consumer needs help with making their bed, doing their washing? In addition, once a consumer has a plan, neither the consumer nor the carer have an understanding of the pricing guide and how to translate this information into meaningful supports. Carers and consumers need assistance in spending plan money.
The NDIS is about empowerment to choose supports and services, holistic person centred planning, and tailored individual funding packages. However, what if a potential future consumer has multiple factors which make it unlikely that they will know about the NDIS, let alone be able to make an application? For example, cognitive impairment, mental illness, social isolation, personality disorders, and drug and alcohol issues. There need to be more assertive options for educating about the NDIS and individuals need SIGNIFICANT assistance in making applications.
The NDIA needs to improve its ability to consider situational factors and co-morbid disabilities when determining eligibility. For example, a person may have a mild cognitive impairment and when this is combined with mild mental illness, it can have a substantial impact on their functioning. In addition, if a person is not working or studying, or does not have any friends and is socially isolated, this IS a substantially reduced functional capacity as they are not living a meaningful and contributing life, even though they may SOMETIMES undertake some volunteer work or occasionally complete a course or access a self-help group. The overall capacity of a person needs to be considered, rather than having to have a communication, mobility, social, learning, self-care or self-management need every day of the year. A person ending up in acute psychiatric care, forensic mental health services or in prison is a good indication that they have a disability which is not being addressed.
All planning conversations need to talk about support coordination. There needs to be support and care coordination LONG TERM for all the individuals deemed to have psychosocial disability, not temporary as it is set up currently. Ageing parents’ support as coordinators of care is not sustainable. There also needs to be funding within a person’s NDIS plan for the service providers and support workers for that person to meet regularly to discuss and review the person’s needs.
NGO staff are scared they will lose their jobs and funding. Those with lived experience do not need to, and do not want to, know this information. They certainly do not want to be informed of this information as a scare tactic and a way to make the people with lived experience think that they are LUCKY and should not bite the hand that feeds them.
Assertive outreach is also needed for hard to reach groups. According to DSS, there were approximately 2231 clients who were part of Commonwealth funded programs. Of these, only 255 have been deemed eligible for the NDIS (with 91 having an approved plan), 164 are awaiting a plan, 149 are in progress or in draft, and 139 were declined access. However, 942 have had their access cancelled as they failed to respond to phone calls or letters. This might be related to their disability – they might not open mail or answer telephone calls from unknown phone numbers, or they simply may have moved house and are not receiving any mail from the NDIA. Others may receive mail, however not know what action to take regarding the information. Another 565 have been deemed ineligible, which represents 25%. There needs to be much better support and assistance for those in prison, in hospitals awaiting discharge, people who are homeless, those living within sub-standard supported residential facilities or living with ageing carers.
There needs to be improved access to early intervention. Early intervention is about preventing the person from disengaging from society. The UN report on the rights of those with disabilities stated that the medical model of care and psychosocial support are preventing good services. Inclusiveness can reduce loneliness. People with psychosocial disability may want to work, garden, interact with the community. People have not in the past had the supports to recover. Recent international research demonstrates that only 1 in 7 recover when measured by medical and social outcomes. Other Individuals were scared of moving towards recovery in the past as they have feared services would be inevitably withdrawn or ceased. The NDIA likes plans that are innovative and outside the square. Now individuals have their own funds, but they are not armed with the skills and experience to know how to use their funds. Currently on average, only 65% of funding within plans is being used. This is also related to the workforce being too thin, therefore the capacity of the workforce also needs to be increased quite dramatically.
However, one significant factor which is contributing to the workforce remaining small is the new NDIS Commission registration and auditing processes. The cost of an audit is at least $1000 and for small scale providers this is prohibitive.
We also need Inclusion not just integration, for example three men with NDIS plans going to bowl together is integration, but three men who join a pre-existing team is inclusion.
The person with the NDIS plan is the coordinator of their care, not the service providers. However, we need to empower the individuals, and/or the carers to be the coordinators.
Carers need to be included more regularly and on an ongoing basis. When carers are included there are better outcomes. The NDIA needs to work out how to better engage carers.
There is a lack of clarity on whether carer respite is available within plans for the carer, or indeed the care recipient. This needs to be much clearer and more transparent.
A person may not want to interact with services based on their past experiences. There needs to be involvement and interfacing with other agencies, such as councils, that can be around for a long time.
The level of consumer interest in accessing the NDIS is likely to be low as some individuals, and in particular Indigenous individuals, do not consider that they have a disability. Others falsely think inclusion may impact on their Centrelink payments. Education is not reaching families.
The NDIA have very limited tools currently to measure psychosocial disability. There’s the WHODAS or the LSP, however what if a person has never had adequate assessments and fallen through all the ‘gaps’ and now they are in an acute hospital setting or in hospital or living with ageing parents where everything is completed for them? An assessment of their adaptive functioning in this environment will not be an accurate guide to their substantially reduced functional capacity. This is also true to an extent if the person is in a stepped care facility such as an Intermediate Care Centre or a Community Rehabilitation Centre.
There needs to be targeted education to GPs and psychiatrists about the NDIS and making applications.
There needs to be improved collaboration between the NDIA and other agencies, including the public advocate, disability services, education, health, correctional services, housing, forensic mental health and NGOs. There needs to be clear governance developed between the relevant stakeholders, agreements and processes within and between the relevant organisations and clear escalation process within each organisation from local to managerial to executive if needed.
The NDIS should never have been used an excuse to reduce psychosocial community services – we need both. 13% should be spent on MHServices – most countries only spend 2%!!!! $700 million was spent on PIR, PhamHS, Day to Day Living Mental Health Carer Respite Support and Headspace and this was replaced with only $80 million over four years.
Many clients were exited from the PhaMs program as a result of NGO providers anticipating the cessation of funding from 1 July 2018. Some of these clients have now been ‘lost’ and thus have not returned to the PHaMs program to test their eligibility for the NDIS. State NGO’s have also not received continuity of support funding to re-instate services.
PIR is a fantastic service and I welcomed the announcement that the PHN’s are taking on psychosocial support for those that are deemed ineligible for the NDIS, and also to help the voiceless and powerless to access supports and services. It is vital that this service continues, particularly in assisting people to test their eligibility for the NDIS and to coordinate alternative referrals if a person is deemed ineligible for the scheme.
Programs like IPRSS and HASP need to continue to be funded for those with psychosocial disability who are deemed ineligible for the NDIS.
We need to make changes for ALL severities of illness, including those that have not yet recovered and are vulnerable and cannot speak for themselves. However, those who are vulnerable and in the minority need to be given power and not be expected to hold all the responsibility.
Service providers including the NDIA also need to realise that experts are those with lived experience. If we wanted to know how to play the piano then we would ask an expert pianist. Why don’t we ask those who have recovered from being unwell about how to do things better?
A Cochrane review found that peer workers are no better or worse than professionals, and other research demonstrates that peer workers can reduce hospital re-admission rates. All voices involved in a problem need to be heard. All perspectives need to be treated as valid.
When a project is consumer or carer led it looks different and BETTER. Lived experience workers – including peer specialists and carer consultants - assist those within systems to better navigate services, be informed about their rights and what services are available, and also to enable them to access support when needed - at the right level and at the right time, first time and every time.
There are many peer led services which are effective, but are not readily available in SA. These include alternatives to suicide, intentional peer support and survivor led crisis services.
Lived experience workers also need access to regular training and supervision, and need to have clear processes for making complaints. Lived experience involvement needs to be included within services as KPIs and providing financial incentives for service providers to engage with those with lived experience would be welcome. We need to embed human rights into KPIs rather than “risk”.
Mental health services provided by the state are geographically based so if a person moves there is no continuity of service provision, so this also needs to be addressed when a person is receiving services from the NDIA and local health networks.
The Access Request Forms are not user friendly. You can input data electronically into the form but given that the client and service providers’ signature is required, you then need to print out the form, however some of the data inputed into the domains is then lost. If you choose instead to print out the ARF, the boxes for inputing information into the domains of social, communication, mobility, etc. are too small to provide sufficient details.
The process of completing an Access Request Form is traumatic and time consuming and complicated. We need a better balance in describing the despair and the distress with hope and optimism. For those with a trauma history, this process can be very invalidating at the least, and very traumatic at worst. 90% of those who are clients of public mental health services have been exposed to childhood trauma. We need to somehow reduce the need for people to retell their story
The NDIA often have approximately 12 questions to determine your initial package. How can a person’s life be reduced to 12 questions, particularly when they have a focus on physical disability factors ? This needs to change.
Currently the pathway for mental health crises is hospitalisation. This needs to change as crises will still occur, even for people with NDIS packages. Crisis respite, better community supports, intensive home based support service, crisis stabilisation and increased intermediate care centres and community rehabilitation centres are ALL much better options, are more cost effective and are less traumatising. These need to continue receiving funding. There also needs to be easier and improved access to stepped care facilities for individuals who are deemed ineligible for the NDIS. The closing of the Intermediate Care Centre at Glenside some years ago has had the result of reducing the ability of CALHN to provide true step up and step down assistance for those with complex mental illness. The Queenstown ICC now is only able to provide step down assistance for those exiting hospital, and there is a significant waiting list to access the service. People who had been benefiting from short admissions to ICC’s are now taking up beds in Emergency Departments and contributing to delays, ramping and crowded EDs. There are also individuals in hospital awaiting discharge but there are no supported accommodation options for them to move into.
Due to historical and cultural factors, Aboriginal carers are less likely to identify or be identified as carers, or to access supports from mainstream services. Complex family structures and traditional values influence how family members care for each other, how “caring” is viewed, and how community organisations need to approach and support carers. There needs to be improved and true collaboration with Aboriginal communities – yarning and sharing.
The NDIS has insufficient pricing arrangements for the provision of capacity building services – across the Scheme capacity building is averaging 26% however this varies from 16% - 50% across jurisdictions.
NDIS letters need to be clearer so that people can understand why they did not meet access.
A broader range of providers need to be able to provide information regarding severity and permanency for the access process – not just psychiatrists and GPs. This has not yet been built consistently into the NDIA National Access Team practice.
The current pricing does not fund level 4 workers that might have the ability to provide core funding to participants and gradually work towards building their capacity. Currently there is also not enough flexibility within plans to move between core and capacity building supports.
A barrier to Supported Disability Accommodation is the lack of clarify in the definition of SDA. Housing providers need more clarity and certainty in relation to SDA. Purpose built houses have been provided by Renewal SA, however these are not being accessed due to delays in NDIS plans being approved.