A Lived Experience Perspective of the NDIS – Pat Sutton – March 2021
My husband, Keith, and I are very normal working class people; he was a Fitter and Turner, and I was a Secretary in the Public Service. We had hopes that our 4 children, as well as living happy and healthy lives, might also be able to aim a little higher with better education. However, our lives were rudely interrupted in 1991, when our eldest son, Peter, at age 21, just months after he had completed a Fitter and Turner apprenticeship, was “coward- punched” in a vicious, unprovoked assault. The resultant acquired brain injury led to a slow deterioration in his mental state, and consequently, his life changed drastically; e became estranged from his friends, was unable to continue to work, went on to lead a very marginalized life and has been receiving a disability support pension since that time. He has spent many, many months in hospital, the last psychiatric hospital admission being 2 years in a closed ward, simply because he always ran away, when transferred to an open ward. Shockingly, our younger son, Ben, also experienced a deterioration in his mental state at age of 17, not long after the assault on his brother, and he was quickly diagnosed with schizophrenia and left school. Although he had been an extremely successful student, Ben has never worked; also became estranged from his friends and has been on a disability support pension since then. Our family has been devastated by what has happened to Peter and Ben, and the trauma, fear and grief we experience on an ongoing basis was made so much worse when we discovered to our dismay the scarcity of good quality services and supports for our 2 sons, and many others like them. We have also personally experienced firsthand the stigma and discrimination which is so widespread in the community towards people with severe mental illnesses like schizophrenia. our experiences led me to becoming an advocate in the mental health sector more than 20 years ago and I have been on numerous advisory groups at local, state and national level, and worked for government and non-government organisations in a wide range of positions. This includes the position of Carer Consultant in an intensive care psychiatric unit auditoried in the Mental Health Unit of SA Health, as well as 12 years on the Guardianship Board inSA. My daughter, Sarah, who is a Clinical and Forensic Psychologist, also became an advocate once she completed her university studies. our family supported our sons virtually without community support for 28 years. Mental health services failed to include them in independent living programs due to belief that it would set them up to fail; due their disabilities yet they did not refer our sons Disability Services. We were incredibly hopeful when NDIS first introduced because joined sub group advocating for mental health included in NDIS helped write booklet Unravelling Psychosocial Disabilities where my sons featured case studies.
https://nmhccf.org.au/sites/default/files/docs/nmhccfpsychosocialdisabilitybookletwebversion27oct11.pdf
I have worked really hard since that time to learn everything I could about the NDIS to ensure my sons were included as participants. We submitted very comprehensive applications and my sons were at last accepted as participants and received their first NDIS Plans in April 2019.
our first problem was finding an agency which was willing and able to provide the support my sons needed. We had to discontinue the services of 2 agencies, however, we were at last lucky enough to find a small, newly commenced agency, which is doing a wonderful job. The 2 well-known non-government mental health agencies did not understand the concept of Choice and Control now being with participants and their families, and what they offered to us would not only have prevented my sons from living independently in their own homes, but would have put the lives of both of them seriously at risk, particularly Peter, who now has diabetes, an eating disorder, brain injury and mental illness, alongside a lack of insight. There needs to be serious attention given to the upskilling of support agencies, particularly education about psychosocial disabilities, which is a new way of describing what used to be known as severe and enduring mental illnesses. an essential element of my sons’ support is that they are independent of family support as my husband and I are now in our 70s, have serious health issues ourselves, and our support is no longer sustainable. there is a lack of supported accommodation, particularly in SA, and particularly the core- auduster type housing, which would have been ideal for my 2 sons and many others like them. This means that many people with psychosocial disabilities either live with ageing parents, or if they have no informal supports, they often end up homeless, living in sub - standard residential facilities, boarding houses, or institutionalized in prisons or hospitals. peter’s and Ben’s goal has always been to live in their own homes, so we invested in real estate in an area experiencing significant growth in values, so that we would eventually be able to gain the funds to purchase a home for them. We succeeded in this and in 2015, we purchased a house, divided into 2 flats, which is situated just three doors away from our family home. The lives of our whole family have changed significantly since Peter and Ben have lived in their own homes and at last, they are receiving the care and support they urgently need, which is currently 24-hour shared care through Supported Independent Living funding. People with schizophrenia have been the most stigmatized and marginalized cohort of the mental health population for a very long time and have continued to fall through the gaps. They will make up the majority of participants in the psychosocial disability area of the NDIS and yet the numbers of people with psychosocial disabilities who have become participants is well below the number initially estimated and that number anyway has since been deemed to have been an underestimation of the actual figures.
Independent Assessments Submission 360
Many people with psychosocial disabilities are not meeting access requirements and many are not receiving funding appropriate to their individual needs, including independent living. Families of loved ones with severe and enduring mental illnesses like schizophrenia, now known as psychosocial disabilities, are urgently requiring guidance and support to make successful applications as the NDIS is a very new concept for them and many of them have ot received support prior to this, with loved ones dependent on them, often on ageing parents. Also, many people with psychosocial disabilities do NOT have families/carers in their lives who have spent 20 years advocating in the mental health sector as ours has. Because of my wide networks with families across Australia, I am learning that many families of loved ones with psychosocial disabilities are not even applying for NDIS funding, due to the misinformation which abounds and many other NDIS participants are not eceiving the supports they need. Those whose loved ones do become participants are also expeiring frustration with the slow bureaucracy of the NDIA and the long delays, even or small changes in Plans. Our support agency submitted an application to have a bath installed in the flat of one of my sons, as well as submitting extensive evidence by professionals of the need for this. The cost of obtaining the required evidence, as stipulated by NDIA, was approximately $10,000, and yet, the cost of the home modification is only $20,000, and the total of their NDIS unding is close to $1M. The application was submitted 15 months ago, and yet, although we understand that it has basically been approved, the bureaucracy is so slow that we are still waiting for the final go ahead for it to happen! I am a little anxious about new changes currently being considered for the NDIS. Although I uunderstand the positive aspects of introducing Independent Assessments, there are several aspects which are very concerning as to how they will impact on people with psychosocial isabilities. It is essential that a potential participant who has psychosocial disabilities is accompanied at any assessment by a person who understands psychosocial disabilities, knows the person well, understands their individual goals and needs and is able to properly arrarticulate this to the assessor. Therefore, I wish to strongly advocate for the appointment and funding of a Case Manager (CM) at the initial stage of an application by a person with psychosocial disabilities, which eeds to be someone who has wide knowledge of psychosocial disabilities. It is essential that the CM is funded well enough to enable them to spend sufficient time with the potential participant and their family building trust and getting to know the person and their invidual situation well. This will ensure that the newly introduced Independent Assessment will successfully take place with the potential participant sitting alongside someone who knows their goals and their needs well and ensures they are appropriately met. This is currently a large gap in the NDIS. I am still extensively involved in the coordination of my sons’ care and support. It is essential that there is good ongoing communication between ALL of the agencies who support them, which includes the NDIS support team, their GPs, allied health services, mental health
Independent Assessments
Submission 360
direct services and specialist hospital staff who assist with the management of Peter’s diabetes, which is very difficult, given the impact of his psychosocial disabilities on this. As I have said, my involvement at this level is not sustainable and I am very concerned about how will take over this role. The Support Coordinators we have been allocated have NOT unnderstood psychosocial disabilities, and have not had sufficient time to enable them to unserstand my sons’ needs in order to carry out their role.
i do not think that the position of Case Manager needs to be funded at the same high level of a Support Coordinator, which will enable the funds to be better spent providing a longer amount of time building trust with the participant and the family and carrying out their role successfully.
Pat Sutton
Submission to the Royal Commission into violence, abuse, neglect
and exploitation of people with disability.
My submission refers specifically to people with psychosocial disability.
My husband and I struggled for 28 years to support our two sons, who have severe mental illnesses and associated psychosocial disabilities. Mental health services provided them with multiple medications, but they were not able to offer them anything else, including adequately supported accommodation, which is what they wanted and needed most.
There is a general lack of support from mental health services for people with severe mental illnesses. One of the biggest barriers is that a large number of people with severe mental illness, particularly schizophrenia, suffer from a symptom known as anosognosia, a medical term for lack of insight, caused by severe mental illness. It is well known that the people with mental illnesses such as schizophrenia have difficulty speaking out and advocating for themselves or their needs and because of the anosognosia, they are resistant to support. Families are very aware of this barrier, but have learned that what is required is a sensitive and caring approach, and a support person spending enough time with the person to develop a trusting relationship. Mental health services have not handled this common barrier well and this results in many being discharged into the community with little or no support. This results in abuses, neglect and exploitation, and even death, and many becoming homeless, in gaols, or living with overburdened families, particularly ageing parents, who worry about what will happen when they are no longer around to support their loved ones.
Prior to 1991, my two sons were both very healthy and happy with many friends. Peter had completed an apprenticeship and Ben was doing extremely well in his matriculation year. However, in 1991, Peter, at age 21, acquired a brain injury from an unprovoked “coward- punch” assault, which was closely followed by the development of a severe mental illness, which included an eating disorder. This severely compromised the insulin-dependent diabetes he was later to acquire, which was caused by the large doses of antipsychotic medications he has been taking for so long. In 1992, Ben, at age 17, became unwell very suddenly whilst still at school and was diagnosed with schizophrenia. Both have been on disability support pensions since that time.
eventually our family purchased a house which is divided into two flats, and is situated close to my home. I have worked in and been an advocate in the mental health sector for more than 25 years and I studied the NDIS from the very beginning in 2010, when mental illnessewas included in the NDIS. My daughter, Sarah, who is a Clinical and Forensic Psychologist, is also an advocate for people with psychosocial disabilities. We learned about the language of disability and what was required to make good applications for my sons, as my husband and I are now in our mid-70s and have serious health issues of our own, and our support is no longer sustainable.
It Was A Life-Changing Day
A life-changing day when my sons received their first NDIS Plans in April 2019. They are now receiving 24hour (shared) care from an agency we were able to find which really does understand psychosocial disability. I am confident that this agency will be able to continue to support my sons’ independent living when I am no longer around. However, I am still involved in coordinating the various supports he receives, medical and hospital appointments, finance, mental health, allied health services, etc. It is vital that people with psychosocial disabilities, particularly if they do not have family involved in their care, have ONE person, a Case Manager role, who is accountable for coordinating all of the supports for their whole of life needs. Maybe then, I will at last be able to “retire”.
The families are very worried about the future of the NDIS funding as the current federal government continues to express concerns about the “unanticipatedly high” costs being incurred, particularly those incurred by people with psychosocial disabilities. I believe that this has lead to some of the things currently being planned for the NDIA for people with psychosocial disabilities - and they are very, very concerning for families who realise that the changes will put their loved ones at great risk.
The proposal announcing the introduction of a
Independent Assessments
Submission 360
We were surprised when we saw the results of the IA which had many incorrect statements, demonstrated a lack of understanding about psychosocial disabilities and were irrelevantly focussed on physical disability needs. The recommendation was for a lesser amount of independent living support hours than he currently receives – and there is no doubt that this would have put him at great risk, if we had had to accept the results of the assessment, which thankfully, at this stage, at least, we did not.
Although stigma and discrimination of people with anxiety and depression has improved somewhat, it is still widespread in the community against people with severe mental illnesses like schizophrenia. My two sons have experienced many instances of this. I, for instance, have been accused by our local Council of “running an unlicensed boarding house” – because my two sons are often seen together on my front verandah smoking their cigarettes. One of my sons has come before the Courts on several occasions for things such as not having an appropriate ticket when travelling on a train and stalking, when he was seen simply standing outside of a neighbour’s house on several occasions. Mental health services refused to support Peter to manage the diabetes he developed from his antipsychotic medications, despite that he was unable to manage it himself. He spent many months in and out of hospital, often being discharged when his blood sugar levels were out of control.
Prior to receiving NDIS support, my son was at very great risk in the community. He was assaulted by police when they were called to assist ambulance services to escort him to hospital, which is general practice if it is known that the person does not wish to go to hospital. My son was treated extremely violently by the two police officers, including being thrown on the ground, beaten with a baton and handcuffed. My son has no history whatsoever of violence, and police were told this prior to their arrival and police had been involved on many previous occasions. The violent assault took place simply because he walked away from them and he was treated as though he was a criminal. He has been mute since this assault, which occurred six years ago.
Psychosocial disabilities are widely misunderstood across the community, including within services. Without appropriate support in the community, people with psychosocial disabilities will continue to suffer violence, abuse, neglect and exploitation. They are particularly vulnerable if they have no family support, and are at grave risk of disastrous consequences, even death. This was evidenced by the death a year or so ago of David Harris in South Australia, who allegedly was receiving support from a non-government agency, as well as mental health services. His body was found by his sister, who lived in NSW, who rushed to see him, when he had failed to answer his telephone.
P Patricia Sutton