Senate Community Affairs Committee Inquiry Into Adequacy of Existing
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Senate Community Affairs Committee Inquiry into Adequacy of existing residential care arrangements for young people with a severe physical, mental or intellectual disability in Australia My name is Mrs Mary Nolan AM and I consent to this submission being published a. the health and support pathways available to young people with complex needs; 1 | Page b. the appropriateness of the aged care system for care of young people with serious and/or permanent mental or physical disabilities; c. alternative systems of care available in federal, state and territory jurisdictions for young people with serious and/or permanent mental, physical or intellectual disabilities; d. the options, consequences and considerations of the de-institutionalisation of young people with serious and/or permanent mental, physical or intellectual disabilities; e. what Australian jurisdictions are currently doing for young people with serious and/or permanent mental, physical or intellectual disabilities, and what they intend to do differently in the future; f. the impact of the introduction of the National Disability Insurance Scheme on the ability of young people in aged care facilities to find more appropriate accommodation; 2 | Page Introduction to author, Mary Nolan AM I am Mary Nolan, wife of John and mother of Christopher Nolan a high achiever, Captain of his school in 1985, lawyer, and founder of Meredith Music Festival in 1991 www.mmf.com.au, still held on our family farm at Meredith. Chris who had a great capacity for people and friendship suffered a catastrophic multi organ collapse and acquired brain injury (ABI) while working in Hanoi in May 1996. Three weeks in Singapore ICU and then airlifted back to St Vincent’s Hospital, Melbourne. Critically ill medical roller coaster, Chris ‘woke up’ from six months coma in November 1996. Medically fragile, in an era before the paradigm shift from ABI as hopeless to understanding that the brain can make new connections and huge advances in neuro science, we knew Chris was hearing and understanding, communicating non verbally with facial expressions. He was refused admission to any rehabilitation facility, but was one of the first to be funded under the Vic ABI Slow to Recover Program for young people with very severe ABI. To our horror, his only option was an aged care facility. I am a founding member of: • Inability Possability Inc www.inabilitypossability.org.au (2001-2015) a volunteer organisation which works for YP with very severe ABI requiring very high levels of care and their families. • Victorian Young People in Nursing Homes (YPINH) Consortium (2001 – 2013) forerunner of the (YPINH) Alliance. I was on working group to organise a National Summit on YPINH in 2002 and a National Conference 2003 - the first time all relevant stakeholders, service providers, government departments, media, YPINH and Families and Friends etc had come together. • The What does Chris Want (WDCW) group of 16 friends and family (2004 – 2015). In 2004, with rumours of the Fitzroy NH closing, and despite work done on the wider level with YPINH Consortium, Chris still had nowhere to go. We asked friends to come together to define what does Chris want and how do we get it? That group has met regularly with Chris mostly monthly with sub groups as needed for almost 12 years. WDCW has been vital in working with Chris to decide what he does want and need, and in using means to achieve, including on media and political levels. Chris is regarded by many with very high and complex needs as a beacon of hope and has assisted others in many ways. In 2002 I received a high commendation in the Human Rights Awards for my ‘ground breaking and pioneering work in bringing the issue of YPINH to public attention’ 3 | Page On Australia Day 2011, I was made a member of the Order of Australia (AM) ‘For service to people with acquired brain injuries, particularly as an advocate for age appropriate accommodation’ Since 1999, o I have been on reference groups for the majority of groups connected with YPINH and know many and their families – with Victorian Department of Human Services, disability and aged care organisations, service providers etc. o Visited care/nursing home facilities in several states o Made submissions to both Federal and State government enquiries and appeared before Senate commissions, o Attended, given papers (including key note speaker) and took part in numerous state and national conferences, meetings, seminars, workshops. o Co-authored 2 books ‘still the doors are open - writings of life’ published by Inability Possability Inc 2004, and ‘Acquired Brain Injury (ABI). A socio-medical model for the care of young people with severe brain injury’ 2008 published by What does Chris Want (WDCW) group o Active through the media both politically, personaly and collectively with the various organisations/groups of which I am part. I offer this resume to give some idea of the breadth and depth of experience and knowledge from which this submission is written. My/our aim is to give voice to the voiceless – those with severe ABI who are unable to speak for themselves and in writing this submission. I walked out of my home at Meredith and work as a radiographer in May 1996 to go to Chris in Singapore and have not been home for more than 2-3 weeks at a time since. I tell Chris he owes me for being his personal assistant – he grins! A high achiever, Chris went from a career high in Hanoi, to a catastrophic illness and acquired brain injury and 6 months in a ‘coma’, to living in aged care nursing home (NH). He went on to be involved in several groups working to highlight the plight of YPINH with very severe ABI, including the COAG Young people in Residential Aged Care agreement in 2006. Then came the closure of the NH in 2005 and Chris had nowhere to go. In the interim a NH in Brunswick was secured with an Individual Support Package (ISP), and the commitment of 10 person place for people with very high and complex needs was given. A difficult decision was taken to refuse the place there and stay in NH with his ISP. (see reasons Page 7 ). Chris has a wide and diverse friendship network and is now very engaged in community. As a friend says, ‘Nolesy you’re better connected than any of us’ 4 | Page Chris’s and our journey pre and in RAC On 22 December 1996 at age 28, Chris moved to an aged care facility in North Fitzroy which had a strongly embedded philosophy and practice of partnership in care with ABI: STRP (Slow to Recover Program) funding and close to his diverse friendship network. It was shocking to have to place our son, so vulnerable and helpless, in a 4 bed room with 3 older men. With no one with experience, the Director of nursing and staff, allied health therapists and I set about trying to help Chris. Some of the roommates became quite close to Chris and we still reminisce about some of the characters and the kindness they showed him. A primary care team of interested nurses was set up to work with Chris. In 1996, that level of ABI was regarded as hopeless. With his friends, many of who are professional and objective, we knew Chris was hearing and understanding, as he was communicating a little with facial expressions but unable to speak, move or see. He was also becoming contracted, and had severe spasticity. We developed a socio- medical rehabilitative model/ approach which incorporates slow and gentle movement and procedural learning. This approach over the next nine years was adapted for eight other YP with very high and complex needs. Two came to that NH not eating, walking or talking and went out to other places doing all three. We can assume people know what we mean when we use the above underlined terminology, but after a senior very experienced rehab nurse told me at a Conference I had turned on a light for her with the following example I don’t presume. Since about the year 2000, advances in neuroscience and imaging techniques have moved from an understanding of the brain as incapable of recovery, to the current understanding that recognises its capacity to create new neural pathways, and achieve gains for the individual that was previously viewed as not possible. It is important to recognise that certain supports and strategies are essential to this happening. Like any of us, one must be well and comfortable: for example for a person with a severe ABI, the need to be positioned well in a customised chair and to be involved in what happens to them. Example: Think back to having your shower this morning – something you do almost automatically starting at same place and having same sequence to the process of washing – generally a pleasurable experience to start the day. 1. Now imagine being suddenly struck down with ABI, you can’t see, speak or move, and generally have pain and spasticity. Different carers shower you in different order and because of time constraints, often rushing everything through. So a shower can become a very confusing and frightening experience in which you play no part except as a passive ‘victim’. Fear often manifests in greatly increased spasticity and spasms making it harder for both carer and person. 5 | Page 2. In contrast, if carers are taught to start at the same place with slow and gentle movement, informing you as each step as it is about to happen, slowly interpreting your non verbal communication as they go, so that you can learn to participate and predict what is coming next – it’s not just a completely different experience, but your brain learns to allow your body e.g.