Senate Community Affairs Committee Inquiry into

Adequacy of existing residential care arrangements for young people with a severe physical, mental or intellectual disability in

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;

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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;

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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 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, . 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’

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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’

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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.

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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. legs to ‘let go’ and to relax and enjoy. This is the core of procedural learning in which the brain learns within the context of the slow and gentle way of learning in which all movements are done the same way every day. Other examples include rolling in bed, transfers, positioning and oral hygiene. It gives dignity and choice to the person. The field is ripe for longitudinal studies in this area of ‘re-learning’.

3. Another example is a young person with a severe ABI regaining (after more than 10 years post injury) the ability to swallow. For a person who is peg fed meals as a bland paste directly to the stomach for so many years, the ability to taste food again in the mouth is an incredible enhancement to their lives. This could not have been achieved without therapy recognising that health gains can be achieved over many years post injury.

4. Conclusion: Aged care can provide basic nursing and health support, and with an ISP a young person can continue and live life fully in an aged care facility which is open to partnership and person centred support.

Unlike many YPINH, a large number of Chris’s friends continued to come and were very significant in his life and well being. Can you imagine the fear and horror of waking up unable to speak, move or see and completely dependent on others? But little by little, Chris’s fear lessened and he began to improve – underpinned by what we were learning and the partnership in care of all concerned, and the processes and protocols set up.

In the 9 years Chris lived at that NH, 8 others with severe ABI were admitted and the ‘model’ we had set up for Chris was adapted for each individual. All improved – 2 came in not eating, walking or talking and left the NH doing all three. 2 others left for other NH and deteriorated after a cessation of the care and support that had kept them well.

In about 2000 I was employed to complete a Project for a dedicated unit attached to the NH for 3-4 YP with ABI. The aim was to utilise nursing resources as core support but have individualised packages e.g. ABI:STR for the YP, and a separate but connected living space. A change of CEO at organisation brought a change in direction and so nothing came of that.

The learnings from that 9 year experience and since with Chris are the basis of Acquired Brain Injury (ABI). A socio-medical model for the care of young people with severe ABI published in 2008 by the ‘What Does Chris Want’ (WDCW) group of family and friends (2004 – 2015). See Appendix 1 – this is presently being revised. This includes an appendix with stories of the 9 young people who lived at that NH 1996 – 2005 when it closed.

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In 2004/2005 with the NH closing and Chris still with no options, the WDCW group lobbied and were a strong voice in getting the COAG YPIRAC agreement of 2006. Vic DHS agreed to set up a 10 person place for people with very high and complex needs under the YPIRAC Vic program ‘my future my choice’.

In December 2005, the Fitzroy NH closed and with the promise of the 10 person facility being built, we agreed that Chris would go as an interim measure to another nursing home. In addition to his ABI:STRP funding, Chris received an Individual Support Package (ISP). We chose a state aged care facility in Brunswick again because of higher standard of nursing care, location, and an agreement with Melbourne Health on several areas including partnership in care and continuation of the socio medical ‘model’ we knew worked, and his own therapy team and carers who knew him well going with him to the new 30 bed place. Because of no vacancy at the interim NH, Chris had 11 weeks on his own with his own carers in Fitzroy after the NH closed, and he moved to Brunswick in March 2006.

It was a well planned transition and despite a few ‘hiccups’ and resistance from a few staff, Chris settled in very well.

I was on the reference group for the DHS ‘my future my choice’ YPIRAC initiative, and also the organisation which won the tender to build and operate the 10 person place. It is relevant here, and suffice to say, that after all the years of work and hopeful dreams, we had no option but to refuse a place in the new facility for Chris. We were so bitterly disappointed. Reasons:

The new 10 person place beautiful building in good location BUT:

The facility was block funded with the same organisation • Being owner and landlord, • holder and controller of all block funding, and • Being the service provider with: o no guarantee of level of medical care or continuation of partnership socio medical model which we knew worked, o Chris’s long time carers and/or team could not transition with him (he wept when he heard that) o Chris could not have same access to the community or the family farm o No place to park his Toyota Hiace in which he goes out o Little choice in who worked with him, where he went, therapists, etc. The bottom line is if you do not have control over individualised funding, you control nothing and choice is seriously limited. One young resident is trying to get back to a NH near his family but his funding is tied to the facility. His family is presently fighting for ISP funding from DHS. So far he has been unsuccessful and so he is trapped.

So Chris remained at Brunswick NH by choice with two areas of funding separate

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• ‘Core’ aged care funding is from aged care

• Chris’s Individualised Support Package (ISP) which we have control and manage with assistance of case manager.

Chris has thrived. He communicates non verbally with facial expressions and long blink for Yes, but can’t see, speak or move much. Suffice to say with his ISP and carers and team who have been with him from 6 months to 18 years, Chris has made very significant and unforeseen gains in communication, general wellbeing, and movement and now participates socially and economically in society. He is still the same high achiever, and has the personality and drive to achieve. He really likes to ‘do his bit’ and give back.

Chris has his own carers several hours daily, and wants to live life as fully as he can with good support – always ready to stretch boundaries and to ‘do his bit’! Examples:

• he’s raised over $4000 in movember over past 3 years http://au.movember.com/mospace/3663789, • St. Patrick’s College Ballarat set up a new academic award for the top 15% of students years 7-12 about 7 years ag,o and named it the Chris Nolan Award. Chris really enjoys attending end of semester Assemblies for presentation – there were almost 2000 in gym for last Assembly. I think it’s been two way as he is quite an influence on, and inspiration for, the school community and them on him. Old friends and school mates Peelie, Sharpie, Rich and John have all accompanied us. http://www.stpats.vic.edu.au/NewsletterPdfs/209/sham_text_vol13_ed1_web.pdf - pages 12, 13 • Chris opens the Golden Plains music festival using his long blink for yes (after punters loud request!). He and they love it. Again he has quite an influence and has so many come to the ‘Nolan stand’ at the festival to thank him and tell him how much the festival means to them. o https://www.youtube.com/watch?v=l7sqvacz9OQ o http://2013.goldenplains.com.au/supernatural-amphitheatre/nolans-chris- nolan-jack-and-mary-nolan/ • Has a MOTOmed computerised recumbent cycle which fits on to the end of his bed. Most days he does 30 - 40mins. It was set at 15rpm and he really enjoys it. We never expected he would be able to pedal on his own until one day he pushed the revs and has done a 40 rpm! • He visits the Royal Oak Hotel in Fitzroy for lunch mostly monthly with an old friend, local coffee shops, farm for weekends, friends celebrations and music gigs. • Won the footy tipping at NH again – this year 1 point more than leading tipster in papers – stoked. Loves his numbers! He uses his long eye blink for Yes to indicate his choices and listens to all things football, usually getting to a couple of matches at MCG.

In May 2014 Chris was admitted to emergency at St Vincent’s and later had surgery for a small bowel obstruction, then ICU and very ill. His carers moved to hospital to be with him

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and the partnership/combination of acute nurses with clinical expertise, and carers who know and read Chris’s communication and his positioning was essential to his slow recovery and discharge. After 4 days back at NH Chris had an emergency admission to ICU at Royal Melbourne Hospital (RMH) as St Vincent’s was on bypass. This was very scary at the new hospital as his history and knowledge is all at St Vincent’s. Again his carers moved to RMH and after several days in ICU, doctors said they still had a red flag on Chris as they were not convinced they had found focus. Chris returned to the NH and with a very good GP and his therapy/carer team and NH, staff began a slow road to recovery. He had a few weekends at our farm and then experienced a sudden and very severe septic episode on 17 Nov 2014 and admission to ICU at St Vincent’s. He was in hospital for 7 weeks, again with carers, often critically ill. A nurse who has known him since 1996 said he has the greatest mental, physical and spiritual strength of anyone she knows or has nursed.

About 7 years ago we, as WDCW, worked with Chris to formulate an Advanced Care Wishes outlining Chris’s wishes in event of medical crisis, and giving direction on several people who can be called in event of a crisis to make a small group decision with and for Chris. During these periods of hospitalisation, we used that document several times. With limited health resources, people who are non verbal (even though it is said that 70% of communication is non verbal) are regarded as ‘not there’ and can be treated accordingly. As doctors at St V’s said in 1996, ‘You are everyone’s worst nightmare because it could be one of us or our son or daughter’. Someone like Chris can be very confronting – none of us want to imagine being like that.

Chris returned to NH on 6 Jan 2015 and at time of writing is doing well, although still vulnerable as his sepsis was caused by a bacteria which is still being treated.

His courage and will to live fully as he is, with good support and care, is inspirational. He will open Golden Plains Music Festival in March with his long eye blink for yes.

Chris is an example of someone who has very high and complex care and support needs who continues to make slow but significant gains, and who does live life fully as he is and contributes given appropriate care and support. Key is that is a person centred partnership socio- medical rehabilitative integrated model/ approach which incorporates slow and gentle movement and procedural learning in all he does.

Conclusion

The health and support pathways available to young people with complex needs.

World Health Organisation in its International Classification of Functioning Disability and Health (ICF) 2001 identified the gap between the social and medical models and the need to the two to work together for YP with high and complex needs.

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YPIRAC mid term review stated that this group with very high and complex needs had not been properly addressed and needed health, disability and rehabilitation to come together to meet the needs. To my knowledge this did not happen.

I have experienced the gaps at all levels between health, disability and a rehabilitative approach in the reference groups. Examples include language, attitudes, lack of knowledge of the ‘other’. Joint sub groups discovered and set up processes to get people collaborating, but that soon disappears when that project is finished.

Acute health is very specialised, and generally relies on a patient being able to communicate. With limited resources, doctors/nurses are very limited to diagnose and treat people who are non verbal. Our experience of carers who know Chris working with nurses with clinical expertise - each respectful and aware of the limitations and knowledge of the other was a very good and learning experience for all in acute, and also his carers, and Chris.

On the other hand, the disability system generally has been built from the hard work of those with disability from birth, e.g. intellectual, cerebral palsy. This is very different from people with very severe acquired disability ABI who have had full lives prior to injury/event with old learned processes embedded in their brains with capacity to improve and thrive despite very high and complex needs.

The disability system generally struggles to understand and provide appropriate response to the very complex health issues of such people.

There are blocks everywhere. As a former health professional I find myself in the role of ‘project or liaison manager’ with and for Chris.

Most people in RAC have acquired disability mainly related to ageing. There is a prejudice against the aged, but so many oldies have led inspirational lives and made significant contribution to the society we enjoy now.

Good RAC is the only system which is close to the skills to understand and meet the very high and complex needs of younger people with such acquired disability.

• Some YP need that care and support for a time post hospital and then progress out.

• Some YP should not be there at all

• For others, however, the YPIRAC mfmc discovered great benefits in an individualised support package for YP who choose to stay or have no other option

Only system available for Chris but we are very selective in quality aged care facility we choose.

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De-institutionalisation

Many disability houses are more or just as much ‘institution’ as Residential Aged Care. The key is a personalised approach of partnership in care and support and individualised funding package with control and choice and for some people like Chris, Supported Decision making.

Loneliness is a real problem in our society and social interaction essential for quality of life and well being. While many YP are isolated, it does not have to be so. Chris is an example. Group living in RAC is choice for many, and can work well with an ISP.

NDIS will enable many to live better lives, but housing is still a big problem. For those with very high and complex needs and non verbal, NDIS offers the option of having a much better life in RAC. It has to remain one option among others.

Most of the media against YPINH demonstrates great examples and stories of YP who are able to tell their story and have moved out of RAC – often in to their own units. This is a great option for many and we celebrate that.

For Chris, however, and those who are non verbal with no purposeful movement to use assistive technology to even call for assistance, living alone is not an option. Integral to their survival is also the expertise of clinical care to notice and respond to their high and complex health needs.

People keep people safe however – non verbal people are particularly vulnerable as we have seen in with abuse.

RAC – system is in country, suburbs and city so means a younger person can live in or close to his/her own community – often vital for social participation.

The WDCW socio-medical model describes a social medical approach based on the philosophy and practice in care and incorporates the best of neuro science research in a rehabilitative slow and gentle movement procedural learning and enriched environment.

Rehabilitation (usually time bound and intensive) is often confused with an integrated rehabilitative procedural leaning approach which is integrated into every aspect of care and support throughout a person’s life. Few longitudinal studies have been done

Making RAC inaccessible for YP with very high and complex needs is very frightening and in my opinion would be disastrous. RAC must remain an option of choice but not a dumping ground for all YP with complex needs.

Why not use a system we have and innovate, find ways to make it work better for those with very high and complex needs who choose this option? Either individually or in small groups - each with individualised funding? Mary Nolan 17.2.2015

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