Submission to Parliamentary Enquiry re NDIS and Mental Health
I have been a long time advocate for people with severe mental illness with associated psychosocial disabilities and their families since the mid-1990s when my 2 sons, at ages of 17 and 21 respectively, were diagnosed with schizophrenia, and I quickly learned to my dismay that services were scarce and difficult to access.
It quickly became obvious to me that it was essential that family members needed to advocate for the people with severe mental illness who were unable to speak out for themselves. This lead to me leaving my administrative job and working for the last 20 plus years, utilizing my lived experience, in voluntary and paid positions in both government and non-government organisations, including as a Carer Consultant in the high dependency ward in Glenside Hospital; I was the first Carer Consultant appointed to work in the Mental Health Unit in SA Health for several years and at the same time, I worked for 12 years as a member of the Guardianship Board of SA. I have also worked extensively in the education of service providers and the whole community about the reality of severe mental illness, in order to overcome the stigma and discrimination so prevalent in the community and in fact within services. Though now retired from paid positions, I still do this important work with Flinders University and several non-government agencies.
I was a member of the National Mental Health Consumer Carer Forum in 2010, when we produced the booklet “Unravelling Psychosocial Disabilities” in which the experiences of my 2 sons is featured as examples of what it is like to have a psychosocial disability. This booklet was produced specifically for the Senate Inquiry to ensure that people with psychosocial disabilities were properly included in the NDIS, however, it seems that these people are still not gaining access to the NDIS. This urgently needs to be investigated and addressed.
Most of my recent work is focussed on ensuring people with psychosocial disabilities are adequately included in the NDIS. Families have waited a long, long time for this unique and fantastic opportunity for their loved ones to at last receive the community supports they so desperately need. However, they are in desperate need of education and support to enable them to access the NDIS and there is not enough support from either government or non government agencies to help them to do this.
It is vital that there is extensive outreach to the community - first of all to even reach them, particularly those who have lived for years without receiving sufficient support and are hesitant to become involved with NDIS, largely due to the negativity in the community around mental health, or psychosocial disability, and the NDIS.
There has long been a lack of acknowledgement and understanding in the mental health sector that a small number of people with severe mental illness are severely disabled by their illness. This is despite recent international research which states that only 1 in 7
people with schizophrenia actually recover, when taking into account both medical and social domains.
The introduction of “recovery-oriented” services some years ago was meant to improve these stats and lead to every person with a mental illness being provided with services which would assist them to live their lives to the best of their ability in an environment of hope. However, this has not been working very well for people with severe mental illnesses like schizophrenia and bipolar disorder. Unfortunately this has been largely due to there being considerable misunderstanding by service providers about how to overcome the barriers which exist which have prevented this group of people with mental illness from receiving the supports they so desperately need and consequently, many remain marginalised in the community.
The NDIS should be and in fact, must be, the light at the end of the tunnel for these people with psychosocial disabilities, so it is essential that the same mistakes are not made by the NDIA.
It is essential that these barriers are properly addressed. The most significant barrier is due to the fact that approximately 60% of people with schizophrenia do not have insight into their illness and consequently may not even acknowledge their need for support. It is therefore vital that people who are involved in the access process and plan management have the training and the skills necessary to overcome this barrier. It also makes it essential that family members and carers are included in all discussions, where it is appropriate to do so, and their inclusion must be properly assessed. This should also include frank discussions as to whether or not the support that they provide is sustainable. So many ageing parents still live with and support their adult children. Not only does the ongoing stress they experience have huge affects on their own mental and physical health, they also experience huge anxiety as to what will happen when they are no longer around to provide that support.
My sons have both been diagnosed with schizophrenia and both have extensive psychosocial disabilities. Although they have had their illness for 27 years, they have only been receiving community support for the last 3 years and this was as a result of the intervention of Partners in Recovery in our family who worked hard to gain packages of support to enable them to live independently in the community. Prior to this, they mostly lived with my husband and me despite that their greatest wish was to live independently. A program like Partners in Recovery must be continued in order to ensure the provision of appropriate services to people with severe mental illness and their families.
Ironically, despite that my eldest son has complex needs and extensive psychosocial disabilities, he only receives comprehensive community support not because of his mental illness, but because he has insulin dependent diabetes, which combined with an eating disorder, is very difficult to manage and life-threatening at times.
Adequately supported accommodation for people with severe mental illness and psychosocial disabilities is a huge issue in SA. Basically, there is none! This population of people with severe mental illness struggle to live independently in the community, they remain living unsupported in the community often in a revolving hospital door situation, a much more expensive option to the community. Many can be found in gaols, homeless, in sub-standard residential facilities or with ageing parents, etc.
It is now well acknowledged that despite that they actually do come into contact with health services of some kind much more than the general public, they still have a 25 year reduced life expectancy – and this is largely due to lack of or untimely treatment for the physical health issues they develop, often due to side effects of psychiatric medications.
Lack of support and meaningful activities in their lives also leads to 90% of people with schizophrenia smoking, which they see as an activity to fill their days.
I am happy to be contacted if any further information is required.
My contact details are as follows: