Submission to the Senate Standing Committee on Community Affairs re NDIS
From Mary Nolan AM
26 January 2013
In 1996, my husband John and I were thrown into what seemed a different world with no ‘Road map’. While working in Hanoi as a lawyer our son, Chris Nolan then 28 and a high achiever, suffered a multi organ collapse and subsequently a very severe acquired brain injury (ABI). After 6 months in coma he ‘woke up’ and left St Vincent’s Hospital to live in an aged care nursing home with funding under the new Victorian ABI:Slow to Recover program.
I documented much of the journey of 1996-2010 in my Submission to the Australian Government Productivity Commission Inquiry Into Disability Care and Support in August 2010.
In 2004 despite all our work on the wider with YPINH Consortium, there was still no option for Chris and the nursing home where he lived was closing. In June 2004, we formed the What does Chris want (WDCW) group of about 14 family and friends – its aim to determine what Chris wants/needs and how do we get it. As a result of intense advocacy by WDCW and others, we were delighted with the COAG agreement in 2006 for YPINH (Young People in Nursing Homes). In the absence of anything else we could find, WDCW published ‘Acquired Brain Injury (ABI). A socio-medical model for the care of young people with severe ABI’. The book was launched in December 2008 by the Hon Bill Shorten.
We advocated for a 10 person place which was funded and opened in Melbourne in 2010 – with one organisation holding all funding as landlord, service provider and holder of all funds. We have learnt that no control over the funding, means no choice. If Chris had taken a place there, he would have had lesser level of care, lost the carers and team who have been with him for so long and not had the choices and the option of getting out and about as he does now. We were bitterly disappointed but refused the place there.
So Chris continues to live in aged care nursing home (NH) with his own carers for several hours daily.
Chris now hears and understands, but is unable to speak, move or see much. He communicates non verbally with facial expressions, body language, vocalising and a long blink for yes. He is fully dependent and gets about in a carer assisted wheel chair and Toyota vehicle (with wheel chair hoist). He has a wide and diverse friendship network and gets out often, including weekends to the family farm at Meredith. Despite his inabilities, Chris has amazing courage and perseverance and wants to live life as fully as he can and does - with good support. He likes to be at the centre of things, taking part, participating, ‘doing his bit’ – a challenge for someone with his inabilities. He is still making improvements thanks to his team.
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Chris has very high and complex needs and a narrow margin of health. He depends on those who know him, including therapy and nursing staff and carers, for close knowledge of, and attention and response to, his communication and needs. Small changes to his care and support program can have drastic consequences e.g. correct positioning for oral meals and Peg feeds is critical to avoid aspiration and pneumonia. Carers are trained to involve him in all aspects of his personal care and positioning and transfers and if this does not happen he can become very anxious, upset and uncomfortable, spasticity increases, and he risks pressure areas. The Philosophy and Practice of Partnership in Care informs all we are and do and reflective practice is part of that team approach enabling ongoing review and attention with Chris at centre.
Over the past almost 17 years, after a medical roller coaster in the first 2 or 3 years, Chris has made remarkable and never foreseen gains. One example of improvement in his swallowing is documented in video fluoroscopies from 2001 – 2011 and he now eats two meals daily. He has also won the footy tipping two years using his long blink to indicate his team. He has a large and diverse friendship network of pre and post injury friends and is said to be ‘one of the most well connected people around, Nolesy’. This has been a long slow road with much struggle and advocacy at every level. He gets great satisfaction in breaking ground and ‘doing his bit’ as citizen and he has a wide influence. Examples/roles include: friend, godfather, face of the early years of the campaign for Young People in Nursing Homes (YPINH), founding member of Inability Possability Inc, co-founder of the Meredith Music Festival (MMF) 1991 - 2012, opens Golden Plains Music Festival using his long yes blink, inspirer of St Patrick’s College Ballarat Chris Nolan Academic Awards presentations of which he attends, Movember 2012 when he raised over $2000 for men’s health. Since 2004, member of the What Does Chris Want (WDCW) group of friends and family which meets regularly with Chris at NH. He has also been very involved in accessibility provision for young people at MMF festival site.
In summary, what we have developed for and do with Chris has been well tested and adapted over these years though major changes and what is happening now works very well for him.
In 2002 I was awarded a human rights award for my ‘groundbreaking and pioneering work in bringing the issue of young people in nursing homes (YPINH) to public attention’.
On Australia Day 2011, I was made a member of the Order of Australia (AM) for my ‘service to people with acquired brain injury especially in the area of accommodation’.
We (WDCW and his parents) are encouraged about the National Disability Insurance Scheme (NDIS) and while the Bill is complex and hard to read well, we believe it will be a paradigm shift for many people with disability to have choice and control over their lives and to be able to purchase services.
We have real reservations however for Chris and others like him with very high and complex needs and non verbal, as it seems to be focussed on disability without reference to what else some people with complex needs have as result of their disability. iNamely the need for interfaces between various sectors – health, rehabilitation, aged care and disability support services. Rehabilitation not in terms of time limited often inpatient stays, but a rehabilitative approach, which incorporates an integrated program to maximise potential and gains. Chris and others like him need all of these to survive and thrive.ii
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Main points:
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Real concern about the lack of interface between disability, health, aged care and rehabilitation. Young people with very severe ABI and very high complex needs often ‘fall through the cracks’ of the very separate systems.
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‘Reasonable and necessary supports’ is unclear.
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Chris now 44 years old is likely to remain in good high care aged care (his ‘core’ funding) and has individualised disability funding over which he and we have control, enabling his choices. He is living evidence of what is working, his program works very well for him and is reviewed regularly. It is unclear if this can continue under NDIS.
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Chris has had many assessments over those 17 years and plans. Contrary to the experience of many people in NH who have very severe ABI, what is in place now is working very well for him and is dynamic in keeping him connecting with others which are vital for him. The WDCW group and his parents (together with his team of carers and therapists) are very involved in decision making and planning with Chris. Will this be taken into account?
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People with severe ABI who are non verbal can become ‘blank slates’ because there is no-one still in contact who knows the person pre injury. So assessments and planning can miss the point unless there is effort to involve people who know the person. Such people often have no one to speak/advocate for them and are particularly vulnerable.
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Advocacy and co-ordination or case management is missing. Even with the resources we have, we need case management. For people with disability and very high and complex needs, both advocacy and case management/coordination are essential - even if families/friends continue. Otherwise it is just too hard to negotiate the system and services. For people who have no one, vital.
Thank you for the opportunity to provide feedback.
Mary Nolan AM
i The Australian Government Mid Term Review Younger People in Residential Aged Care (YPIRAC) program June 2009
raised the need for cross sector collaboration for young people with very high and complex needs, not just disability approach. This gap seems to remain with this Billi.
ii World Health Organisation International Classification of Functioning, Disability and Health (WHO ICF 2001) also raised the need for the medical and social models of care and support to come together philosophically and practically.
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