A lived experience perspective on the NDIS

30th March 2021

I am currently the SA carer representative on the National Mental Health Consumer and Carer Forum, I am also on the NDIA’s Independent Assessment Working Group and I have also recently been appointed to the NDIAs Intellectual Disability Reference Group. I am also a Forensic and Clinical Psychologist, working privately, and part-time for Correctional Services, where I am extensively involved in assisting clients to access the NDIS.

187 have now met access, and many of these did not previously access any disability supports. The NDIA Justice Liaison Officer in SA has assisted Correctional Services achieve this number of individuals gaining access to the NDIS. Most of these individuals have cognitive impairments and/or psychosocial disability.

Regarding my personal experiences, 30 years ago, my eldest brother, P, at age 21, previously having successfully completed a fitter and turner apprenticeship, and living a very happy life, was the victim of a “coward punch” unprovoked vicious assault, which caused not only an acquired brain injury, but also a slow deterioration in his mental state, resulting in him being on a disability support pension since that time.

Just one year later, my younger brother, B, at age 17, previously an A-grade high school student, suddenly became unwell. He was observed at school standing on the edge of the balcony, and on another day, Mum and Dad came home from work to discover him hiding in a cupboard. They acted quickly and took him to a psychiatrist and he was diagnosed with schizophrenia in the first session, and he also has been on a disability support pension since that time. So, both high functioning, doing well and with lots of friends.

Their experience is not so different from that of other young people with severe mental illness diagnoses, who quite unexpectedly start to show bizarre behaviours or family notice that something is “not quite right” and they are diagnosed with mental illnesses like schizophrenia, have complex needs, untreated physical health issues and so often live marginalized lives in the community. For example, a family friend of ours with a Schizophrenia diagnosis suicided in 2010 as his only option upon release from hospital was sub-standard living in a Boarding House, and he said he would rather die than live in such squalor. When he was discharged from hospital, he did unfortunately suicide.

Many individuals with schizophrenia have a 25-year reduced life expectancy, despite often being seen regularly by health professionals. P for example had an untreated skin cancer for many months, and continues to struggle to manage his diabetes. Many in similar situations, particularly if they do not have informal supports, are homeless, or end up in jails, or live in sub-standard residential accommodation - or continue to live with ageing parents in non-sustainable circumstances.

The NDIS is an unique opportunity to turn this appalling situation around.

My family, having supported my brothers with virtually NO community support for almost 30 years, were very focussed on them becoming NDIS participants, particularly as the medical treatment model of mental illness was not helping, and in fact was leading to human rights breaches and worsening mental health. He had been secluded, restrained, placed on Guardianship and Administration orders over the years. This is often very difficult for others in services, or the community in general, to understand. The trauma we have experiences from services, the fighting we have continually had to do to obtain a basic level of services and supports, has been exhausting, tiring, frustrating, and sometimes soul-destroying.

At last a day we will never forget

At last a day we will never forget, happened in April 2019, a day when the lives of ALL of my family members changed – hopefully forever, and they became participants in the NDIS, and received their initial NDIS plans.

Despite that our very LONG applications – P’s was 70 pages long - included recommendations by OTs for 24 hour care, and there was agreement about this by our NDIA Planner, this did not happen until 12 months after their first Plans commenced, which started initially with 10 hours a day of support.

The 24-hour support came about because our NDIA Planner somewhat understood psychosocial disability and allocated significant, specific funding for a Developmental Educator to further assess their support needs – basically this was an independent assessment, although she was recommended by someone we knew. That assessment took a couple of months to complete, with the DE spending significant amounts of time with my 2 brothers, all of our family members and service providers and support workers involved in their care. One of my brothers, P, does not talk, and he often does not attend appointments, so the DE was not able to spend much time with my brothers, but she was able to observe some of their behaviours, in addition to taking into account the previous assessments and reports from the NDIS application.

Unfortunately, most people with psychosocial disabilities do NOT have carers/family members in their lives who have spent more than 20 years advocating in the mental health sector, as my Mother has, and I am fortunate of course to know a lot about the mental health system, being a psychologist.

Many, many of them are NOT even becoming participants of NDIS – not meeting access or not even applying for NDIS - or not receiving sufficient funding to allow them to live successfully in the community. Many of the participants and their carers who we know are managed by LACs rather than by NDIA planners, and their experiences have been very negative, and they often receive sub-standard NDIS plans as they are unaware of their rights or what can be included in plans.

Many with psychosocial disabilities are also vulnerable, they are subject to significant stigma and discrimination (as evidenced by SANE Australia’s recent stigma report card) and many say no to services, therefore they often say no to NDIS services.

The numbers of people with psychosocial disabilities who have become participants is WELL BELOW the number initially estimated, and that number has also since been deemed to have been an underestimation of the actual figures. Many of the carers whom we know either do not even bother applying for the NDIS, and they continue supporting their adult children, which of course is not sustainable.

There is widespread fear in the mental health sector that the introduction of IAs will exacerbate this situation further, particularly as there is a significant lack of understanding of the actual needs of people with psychosocial disabilities – both in the community – and also by service providers.

My mother, in particular, is still extensively involved in the management and coordination of my brothers’ support. This also is NOT sustainable, as she is now well into her 70s and has developed serious health issues herself. She is very concerned about who will take over her role. We have actually dismissed 4 Specialist Support Coordinators, in 2 years, as they have NOT understood psychosocial disabilities and have been unable to understand my brothers’ needs.

I believe that the issues faced by people with psychosocial disabilities could be quite simply addressed by the appointment of a CASE MANAGER (much like my Mother’s role, but in a paid capacity, similar to the role previously played by Partners in Recovery workers). This needs to happen at the initial stage of the application and needs to be someone who understands psychosocial disabilities and can

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spend sufficient time with the potential participant and the family, as well as all service providers and support workers who know the person well. Rather than a participant having to seek out yet another professional – for example, a LAC or Primary Health Network provider – it is really important for the participant and their family to have choice and control of one provider to oversee all their needs – so they do not have to continue re-telling their story to yet another provider – so they can have their specific needs met in the way they want.

Their role would be to liaise with ALL parties involved with the participant to help them to understand and navigate the NDIS so that they can make good, informed decisions about their individual support needs. This also includes liaison with other sectors, including GPs, mental health services, etc., particularly when the participant has more than one disability, and especially when they have few or no informal support. This could also include navigating the interface issues, including knowing the APTOS principles and ensuring a participant has all of their disability, mental health, physical health, education, employment and other needs met. For example, P almost died several years ago when, due to his disability, he failed to administer his insulin for two days. He experienced ketoacidosis and almost died, and was in intensive care. With funding in his NDIS plan, a diabetes educator has trained the support worker to understand and assist P manage his diabetes. However, there is continued liaison with the hospital and endocrinologist required, in addition to regular liaison with his GP. Given that 40 percent of NDIS participants have a cognitive disability, this means that a significant number of participants are vulnerable and need assistance navigating supports and services through the services of a “case manager”.

It is more important that the person in this role is caring and empathic, rather than having academic qualifications. There also needs to be some flexibility as to who can carry out this role. In our family’s situation, for instance, because of the 24-hour care, the support workers have grown to know my brothers really well and have developed significant rapport with them - and would be very well placed to have the Team Leader of the SIL agency, SA Hope Foundation, as the Case Manager (which currently would be considered to be a conflict of interest). Since he has had NDIS, P has had to return to hospital once, but his support workers were able to go to the hospital, take him out on leaves to access the community and were also able to continue building trust with him, which likely reduced his overall bed stay days in hospital too.

There have continued to be other issues with the NDIA which have been very frustrating. My brothers live in a house which is divided into 2 separate flats. In total they have almost 1 million dollars in their plans, and we needed to provide extensive evidence for the need for a home modification in the flat one of my brothers lives in. We submitted a $20,000 quote for a bath to be installed in B’s house and although we also submitted a Developmental Educators Report, an Occupational Therapist Report, and a Report by a Behaviour Support Practitioner, the NDIA then required a Psychology report – which totally almost $10,000, half the cost of the bath! B has always used a bath as a self-soothing and calming anxiety reduction technique. His main NDIS goal is to live independently, including independent of family, and each night he continues to walk to my parents’ house to have a bath as he likes to have one every night at 8pm, and he does not have his own bath. By the time he returns home after the bath, the relaxing effects of the bath have worn off. It took 12 months for approval and we are still waiting for the “soft touch” review to occur final go ahead, despite 15 months since application submitted.

Another issue we have had is that we applied for SIL in October 2019, but it took 7 months to have this approved, and when it was, the SIL funding was incorrectly placed into the wrong accounts twice. Due to the lag in the transfer of the SIL funding, it crossed over to the next financial year, and we

realised that the funding reduced somewhat, as the rate for SIL reduced from last financial year to the current financial year, which I still don’t quite understand.
However, overall, my brothers’ lives have improved significantly since they have become participants of the NDIS. This is also due to the fact that we were very lucky to have found a wonderful support agency, SA Hope Foundation, which provides fantastic and individual support to my 2 brothers. All of the support workers meet every 4-6 weeks with family members and others involved in my brothers’ care. These meetings are essential so we can all continue working together to address my brothers’ goals and needs.
But this only occurred after we had discontinued the services of 2 agencies (in the first four weeks of their initial plans) who did not understand the concept of families now having Choice and Control and were unable to provide the care and support my brothers required because of the restrictions of their policies and procedures.
So it is vitally important that support agencies are also better educated about the needs of people with psychosocial disabilities.
In summary, there is a continued lack of understanding of psychosocial disability and also a lack of understanding of participants with cognitive impairment. There is a severe lack of skilled Support Coordinators, we are contemplating hiring a recovery coach. We are contemplating a mental health carer we know to become a recovery coach for my brothers as psychosocial disability carers have many of the essential skills and experiences to undertake the Recovery Coach roles well.
The solution to many of these issues would be to fund case managers within plans, if not for all participants, then at least those with psychosocial disabilities and cognitive impairments, to navigate the NDIS and the many ongoing interface issues that arise.
We have experienced ongoing frustration with the delays in bureaucracy of NDIA and we have intense fear of the proposed Independent Assessments.

One of my brothers had an independent assessment on the 17th March 2021. When my mother was approached about this, and she asked me my opinion, I said to say no to the assessment, as I don’t want my brother to have to undergo yet another trauma – an assessment with a stranger. P is actually mute following a police assault many years ago that he sustained when the police arrived to take him to hospital as he was unwell, but he didn’t want to go. He ran off down the street, they chased him and tackled him to the ground and he sustained bruising and cracked ribs, and has been traumatised severely from this incident. It was 2am in the morning and he had not done anything wrong, and he still can not understand why the police attacked him in this way, when they are meant to serve and protect the community.

I am happy that the proposed independent assessments will be free and will provide more consistency in decision making than that provided by the National Access Team. I definitely agree that much more consistency in decision making is needed for access decisions – we even have two corrections clients who are identical twins with the same disability and a similar degree of functional capacity, yet one has met access and the other has not. I also agree that using standardised tools will be helpful to assess the functional capacity of many NDIS participants, and it great that these assessments will be provided free of charge. I am glad that the Life Skills Profile was not included in the IA toolkit, as this contains an inappropriate question about violence, which further added to the stigma and discrimination faced by those with psychosocial disability as it suggests that they are violent. However, I do not agree that the IAs are the way to achieve overall fairness and equity.

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As stated in the presentation, I have many objections to the Independent Assessments. First of all, the Independent Assessors are not actually independent – they are independent of the person; however they are not independent of the agency, having been contracted by the NDIA. Secondly, IAs do not even address the first step in determining eligibility – that is, an assessment to evidence a diagnosis of a disability. Individuals will still need to fund these assessments themselves, which is not fair, particularly for those who are vulnerable and have fallen through many gaps, and likely have no informal supports. Other concerns are the removal of the access lists, the lack of clarity on who may be exempt from IAs and what the alternative pathway will be, the lack of culturally valid assessments in the toolkit, the lack of time available for assessors to build trust with participants and their families, and the focus on avoiding sympathetic bias rather than a focus of therapeutic alliance, which is the most efficacious aspect of any evidence-based engagement. There is also a belief that the Independent Assessors will be registered with AHPRA, however it is my understanding that social workers and rehabilitation counsellors are not registered professions. There is also only one support person allowed, it is unclear who will fund support workers or existing therapists to attend independent assessments with prospective participants and there is no appeals process for the IAs.

In my opinion, there has been a shift in the devaluing of lived experience within the NDIA within the past 12 months, for example the payment for participants and family members for NDIA groups has decreased in the past 12 months, such as the Participant Reference Group, and many participants and their families are expected to complete surveys and provide feedback in their own time, free of charge. In addition, it appears that there were not individuals with lived experience on the expert group involved in the initial IA pilot. My overall positive feelings about the NDIS, I am very, very disappointed to say, have reduced in the last six months with the delays in the SIL funding and the home modification approval and now the proposed independent assessments.

My mother agreed to the IA as the NDIA as she is legal guardian of P, and because the NDIS has finally been a light at the end of a very dark tunnel for our family. She trusts that if we do not want to use the results for P’s next planning meeting, we will not need to, so her belief is that it is the most safe time do have the assessment as they will be mandatory in just a few months’ time – I must say that she has less paranoia than I do!

Anyway, P had his independent assessment on the 17th March. The OT was experienced, empathic and spent approximately three hours, mostly with my mother. She was also given copies of the current plans by my mother as she did not have these already, and my mother also gave her reports that had previously been undertaken, and the OT also requested further follow up information. We are yet to receive the results of the assessment; despite that we have requested these.

Sarah Sutton

Adelaide, South Australia