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Community Affairs References Committee
11/03/2015
Adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities in Australia

BELLERT, Mrs Lauren Rae, Private Capacity

BLACK, Mr Daniel, Private Capacity

CLANCY, Mrs Bernadette, Private Capacity

FINIS, Ms Carolyn, Community Relations Officer, Summer Foundation

JONES, Mrs Leona Faye, Private Capacity

JONES, Mr Ray, Private Capacity

NEWLAND, Mrs Ann, Private Capacity

PETERSEN, Ms Sam, Private Capacity

TELFER, Ms Nicole, Executive Officer, Victorian Coalition of ABI Service Providers Inc.

WINKLER, Dr Di, CEO, Summer Foundation and Chairperson, Victorian Coalition of ABI Service Providers Inc.

WORSNOP, Mr Tom, Executive Manager, Summer Foundation

CHAIR: Welcome Summer Foundation and Victorian Coalition of ABI Service Providers, which I understand Dr Winkler is representing as well. She will wear both hats! Thank you all for coming here and talking to us. I know it can be quite difficult, sharing personal experiences, in particular. Some of you have heard me say this, this morning, but I will repeat it: it is extremely valuable for us to be able hear people's lived experiences. Nothing tells us better what is happening than to hear that, so thank you.

Mr Worsnop : My name is Tom Worsnop, I am the Executive Manager at the Summer Foundation. My background is I started working in this area in 1996, as a case manager in the brain injury sector, and I have been working at the Summer Foundation for the last 18 months.

CHAIR: Thank you.

Dr Winkler : I am Dr Di Winkler from the Summer Foundation, and I am also the chair of VCASP.

Mrs Newland : My name is Ann Newland, I am the mother of Michelle Newland who is present here today. Michelle entered a nursing home at the age of 19 and lived in a nursing home for 16 months after she acquired a severe brain injury from an asthma attack. This was 13 years ago.

Mrs Bellert : My name is Lauren Bellert, I am the wife of a man with an acquired brain injury. He has just recently left the nursing home and is in shared support accommodation.

Mrs L Jones : My name is Leona Jones and I am here today because I felt strongly that I had something to say. I am a stepmother to Craig and Nicole Jones, who were diagnosed with rare brain disease in their early 20s and who spent six and five years in nursing home care. They were later accommodated in an appropriate facility, so we have come the full journey. Craig has since died from the disease, nearly four years ago.

Mrs Clancy : Good afternoon, I am Bernadette Clancy and I am a mother of our daughter with acquired brain injury from a stroke 17 years ago, who is now in a nursing home.

Mr Black : Hello everyone, my name is Daniel Black, I currently reside in a nursing home run by Estia. It is in Heidelberg. I have got cerebral palsy and I have been in the nursing home for about two years and five months. Thank you.

Ms Finis : I am Carolyn Finis with the Summer Foundation, and I am here in a support capacity for Mr Black and Ms Petersen.

Ms Petersen : Hi, I am Sam Petersen and living in a nursing home but looking for a suitable group home.

Ms Finis : Is that volume okay?

CHAIR: Yes, as long as everyone is quiet; yes it is. And I am not being rude by saying that; it is just so that we can hear Ms Petersen. I would like to invite anyone who would like to make an opening statement and then we will ask you some questions. But we tend to do that in a bit of a discursive way—so that if something comes up that you also want to make a comment on, feel free to let me know. Ms Petersen, I understand that you have prepared an opening statement. Would you like to go first?

Ms Finis : Can we start with Daniel?

CHAIR: Okay, yes. Mr Black?

Ms Finis : Daniel has asked for a little bit of assistance with his presentation today. Daniel, first you wanted to talk about the fact that you have got possessions that you like and that are important to you, and about the challenges of having those in a nursing home.

Mr Black : Some of my possessions I had to bring from home. There was difficulty in bringing personal possessions into the nursing home because they wanted to have their rooms unified. I had a problem with that because I do not like to have my room looking like a hospital room, because I have spent a lot of time in hospitals. But the most difficulty I had was actually bringing my bed from home, which is a special bed—the head goes up, the bottom goes up, and it also moves up and down; for those people that have not seen hospital beds—for easy access for the staff that are caring for you. I have since had to sign a waiver for that bed which means that the nursing home is not responsible if I have an accident of some kind. And I have also had—I had to ask for special permission for paintings to go up. They were not anything lewd or crude, it is just personal paintings that I had from home. But I also had to sign a waiver for those as well. Thank you.

Ms Finis : Daniel, the second point you wanted to make was how important physio and rehab is to you. You wanted to talk about why it is important, how much you get now, and how much you would like to get.

Mr Black : The physical rehab that they provide at the nursing home is not adequate for someone with cerebral palsy. I suffer a lot from severe spasms that affect the whole body—especially, for me, it comes from the legs area and travels up the spine, which can be very painful. So the physio that I require is to break the spasms by bending and stretching the legs. At the moment, I only receive about 25 minutes of physio, if that, every week. I require physiotherapy seven days a week, but there is no way that the nursing home can provide that. The thing that annoys me is that you are not able to bring outside help into the nursing home. If you ask for your local counsellor to come in, they are not allowed to come into the nursing home because they think all your needs are met—but they are not met. That is something that needs to be change.

Ms Finis : Daniel, the third point you wanted to make was around the issue of bullying. You wanted to talk about what you have witnessed staff to staff and staff to resident.

Mr Black : This is a very difficult subject for me, because I have been bullied both physically and mentally as a child and as an adult. I really hate people that bully people in any capacity, whether they be able bodied or disabled. I have witnessed a few situations where bullying has happened in the nursing home both staff to staff and also resident to staff, which really upset me. I witnessed one situation where a staff member physically hit another staff member, but the person that was hit was the person they called into the office instead of the other person that was doing the hitting. I have also seen staff members hit residents. The residents that get abused are very elderly, and that annoys me.

Ms Finis : Daniel, the final point that you wanted to raise today was about the financial hardship existing on a disability support pension and living in a nursing home.

Mr Black : That is very difficult. Although I am grateful that I receive a disability support pension from the government, it is very hard for someone living on a disability support pension to live in a nursing home. Currently, I pay $1,485 a month, which only leaves $50 in my monthly account, which leaves me out of pocket to pay chemist bills, to pay other bills that I need to pay like a phone bill. So every month I am owing people money and I have got no way to pay that money because all my pension is going to the nursing home. Although the government still provides some money towards my stay at the nursing home, it is very difficult. Thank you.

CHAIR: Thank you very much. We will hear from other people and then we will ask you some questions. Ms Petersen, do you want to give us your opening statement now?

Ms Petersen : Before I was living on my own in an accessible flat in north Melbourne, going to uni and going out with friends. I had a stroke while having an operation for my dystonia. There are so few places that are suitable and that are near a city. I want to stay close to university, where currently I study fine art. It is also important that I live near my friends. The future is so uncertain, and I just want to feel at home. Where I live now is not all good; it is not all bad, but it is just not home.

CHAIR: Thank you. We will hear from everybody else and then we will come back and ask questions and have a discussion. Mrs Clancy, did you want to make an opening statement?

Mrs Clancy : I would. I never thought I would be saying, 'Our daughter is in a nursing home.' I find that really quite distressing. Colleen, our daughter, is 38 years of age and has acquired brain injury and physical impairment from a stroke 17 years ago, when she was 22. She was perfectly fit and healthy person until that time. Colleen lived with us for 10 years and then decided that she would like to live independently and she proceeded to share a flat with a housemate in private rental. This survived four years, and we went to the Homeshare program. We originally started with Wesley, but the funding ceased for that. The last arrangement was with lifeAssist Homeshare. Unfortunately, we have been through many housemates in that time. It is very hard to sustain. The housemate lives rent free and provides 10 hours support for Colleen in this situation. It is very hard to sustain. Some people are there purely for the free rent, not for the role that is often required of them. After 4½ years, it was becoming quite tricky to keep going.

Unfortunately, from her stroke, she has had many, many falls. In the last one she fractured her shoulder, and she has been in hospital for three months. That three months of hospitalisation then prohibited her returning to her semi-independent living arrangement. We have been unable to bring her home due to caring for another sick member at home. There was nowhere. Seventeen years ago when it first happened there was nowhere for beautiful young people to go. Sadly, 17 years later, there is still nowhere for them to go, which is amazing when you see so many families working so hard to sustain their independence, to give them a quality of life that has some dignity and respect, and trying to keep them connected to their peers.

After many meetings with the Department of Human Services, looking for help, for at least respite for the meantime, it was a nonevent; it was a 'no through road'. We were handed 12 pages of aged-care facilities to go and visit, to choose and to begin the search as to what might suit. I just refused, because we had this scenario 12 months prior when another hiccup arrived. The hospital social worker referred us to an aged-care facility in Hawthorn, and their claim to fame was that there were six young people there. We took the step and have tried it whilst we are desperately searching for the next stage for Colleen. Her name has been put forward to a specific ABI facility that has a vacancy, but how do we get to know any further how she could be chosen for that? It is an unknown quantity and an unknown quality. The maze that families have to search through is almost incomprehensible.

The sad part of being in a nursing home is that all the independence that we have taught for the last 17 years is gone. They cannot even make a cup of tea or a sandwich or do a load of washing and hang out their smalls, which we have been teaching for so long and which was a part of feeling you had that independence, that you are not having everything done for you.

I have a letter here from DHS as a result of meeting with them late last year. The letter is dated 14 November and it says that the department is actively working with local service providers, both department funded or generic community organisations, to develop creative, responsive, innovative housing.

I would love to know where is it on the drawing board? Where is it in the plans? It is well overdue and we are so tired of working so hard for our beautiful, loved young people with a disability. Thank you for the opportunity to be heard on such a vital issue as housing.

CHAIR: Mrs Jones, would you like to make an opening statement?

Mrs L Jones : When our children were diagnosed with Kufs disease at 21 and 24 years old, we tried to look after them in the community for as long as possible. At the time that they were diagnosed, we were offered no counselling, no support and were managing them ourselves in separate units because they were young people. It took an immense toll physically, financially and emotionally. I was a social worker and I knew my way around the traps. I had been a case manager with St Lawrence and also a case manager with McKillop Services so I went searching for what I could find for our kids. I could not find a damn thing.

In the end, both our young people were subjected to some fairly unscrupulous people who regularly stole their pensions. They had things stolen from their units. It did not matter how hard we tried, it became more and more difficult. They became frightened and they became very vulnerable. I could not get case management anywhere, and that included places where I worked yet we had programs like Linkages that were planned and caring for people, for instance, with dementia but we could not get it.

Nicole and Craig eventually suffered health breakdowns and had to be admitted to nursing home care. Nicole went in first because she was quite ill and Craig, 12 months later, became extremely ill. We tried to get him into the same nursing home but they did not want him because he was violent and possibly aggressive. So, again, we had the issue of just where he was going to go.

We in turn suffered the most dreadful guilt and we felt that others judged us as we had promised that they could be with other young people. I said, 'You know, I will see it right. I will find somewhere where there are young people.' I knew there were homes out there were young people lived. Those young people all had intellectual disabilities but they did not have acquired brain injury. We could not get them in anywhere. However, living in a nursing home—and I think I wrote in my submission it was the start of a nightmare—meant that both young people had to adapt to an entirely inappropriate situation. I am sure Bernadette would agree with that.

Nicole pretended to be a staff person to try and fit in. She was 24 at the time. She was presenting quite normally. People were not aware of the damaging seizures she was having at night. So she pretended to be a staff person to try and help with the elderly people around her.

Craig pretended to be a handyman or simply belted a punching bag to express his rage. Our children became trapped within their rooms. Staff were judgemental about why we would put our children in a nursing home and were often annoyed that as well as caring for 100-odd people they had two difficult young people to manage. I take Daniel's point about bullying. Not only were our children bullied at times but we were bullied as well.

Despite all this, eventually we were very fortunate that there was a new purpose-built facility built in Belmont in Geelong called Karroong.

It was like a dream for us because Craig and Nicole were six and five years in nursing home care. Unfortunately, Craig had become really institutionalised. He was told by staff in the nursing home that they did not want him to leave because all his friends were there. He then refused to go in to Karroong, which was another shock to us because he lost his bed. Nicole went in and was wrapt. She said, 'This is like coming home. This is my home.'

Craig came in 12 months later, which was almost too late because he died very quickly after that. The lovely thing was he was allowed to have his dog, Dusty, there. Dusty is still there. She is 15. She has nearly had it. We are hoping that she will remain alive while Nicole is still living. We can visit any time. We are always welcome. It is almost a second home to us. We do not have that blank that we had with the nursing homes. We are given coffee and are really welcome. Craig, I must point out, was allowed to die in dignity in his own room. Nicole has indicated that that is what she will do too.

In closing, there are a couple of things. I forgot one of them. Karroong was also funded by the YPIRAC initiative, which you would know about, and it is the most wonderful place. But because of the NDIS, we have lost the respite bed. We want to make that clear because we are very active in the Karroong advisory committee. We have plans and we have dreams about Karroong and what it could be. With that respite bed gone and now made into a regular bed, young people from nursing homes have lost that ability to be able to come and try the place and see what they think about it. I am concerned about that.

The other thing I am concerned about is the NDIS. Our daughter has been given, by somebody who is very kind, a second-hand wheelchair. I was promised by the NDIS 12 months ago that she would have a purpose-built wheelchair. She is not going to live that long and I want that wheelchair really badly.

I am a little bit like Bernadette here. Nicole has been in care for 12 years. There are still very few options for families like ours. It is absolutely heartbreaking. Please make sure that other young people have the opportunity of these facilities.

Mrs Bellert : Just to give you a bit of background, I have early onset Parkinson's. I am 30 years old. I also have two-year-old twin girls, Audrey and Ava. From the start, after my husband Michael had the aneurysm, it has been a fight just to prove that he was worth the time and deserves the opportunity like someone would if they were maybe a little bit quicker with their recovery.

Once I found out that the only place for him was a nursing home, I started to go outside the system and self-fund a private rehabilitation option. I basically had to fight tooth and nail to get him anything and had to find the money from different organisations. I paid for alternative accommodation, which he now has. He was at the nursing home for probably about a year and a half, not as long as a lot of people. I am very lucky that he did not have to spend as much time in there. But as you can imagine, he is young himself and having young girls in the tiny room with him was not the right place for anyone at that age.

His new residence is a shared supported accommodation. This new place is basically a share house for people that have disabilities. Half of them are TAC and the other half are like Michael who are government funded. It is like home for him now. It is like mates who share a house together but it has 24-hour care. The first week that he was there, the transformation was just amazing. At the nursing home, he would spend every day in his room watching TV. For my husband, that would have driven him insane because he is a very restless, smart, intelligent man and he used to hate TV so he would never sit down and watch a movie with me. So now he gets up every morning and goes into the lounge room. He is not verbal so he is not able to participate in conversations but he will laugh and listen and interact with the staff. He is a part of a community now that he was not a part of before, and it is like a second home for me and the girls as well.

At the start, I was overwhelmed. I was three months pregnant when he had the aneurysm. Absorbing all the information that I should have at that time was very difficult. Looking back, maybe a little bit down the track once he had been in the nursing home and I was able to understand things a bit better, somebody could have presented me with my options of who I needed speak to or with some more information other than 'this is where he is going to go'. There are so many options for funding. I had to Google and research and find out through meeting different people along the way. Luckily, I have been pointed in the right direction. There needs to be more communication and more information out there of what is available, even if it is limited.

The information is not out there neither are the options. You really have to fight in the system to get anywhere. I was not previously that type of person prior to this; I was quite quiet and reserved. But now I have had to become a different person because he needs someone to fight for him and he needs someone to go down those avenues and be ruthless. He is a person like anyone else and deserves to be treated like one. I am sorry but a 30-year-old man does not belong in a room in a nursing home and there were no younger people close to his age.

In the house where he is now, they are probably in their 40s or close to 50s but it is completely different. There is one guy there who is blind. He is like Michael in 20 years time. He likes the same sort of music, he has tattoos and they have a lot in common. There is another guy there who will tell me if has been doing naughty things like lifting his leg. He also has a go at me saying, 'Give him a rest.'

I suppose one of the biggest things for me was I had to fight because he was just so slow at coming out of the whole brain injury once the swelling had gone down and the bleeding had been fixed. If they do not snap out of it straight away then obviously rehab is not an option. But they do not ever come back and check back in. With brain injuries, basically it is time. Every case is different but needs time. Just to ship them out of a hospital bed—that is a whole different issue. If the nursing home sort of situation is the situation, then it needs to be for younger people. Or there needs to be a whole different place for this particular case. The future is unknown for both of us. It is two years down the track, but he is still making progress. He is not verbal but he is swallowing. He does laugh, so he does have sound. I am a bit of nag, so I continually work at him. But I am not giving up on him. There is still a big fight ahead of us. One day, I want to bring him home. But it all depends on how far he can come and how far my condition progresses. I do not know what is going to happen but I am not going to give up on him. I have jumped all around the shop, but that is me.

CHAIR: It does not sound like you have jumped all around the shop. I thought you explained that really well.

Mrs Newland : There are many things I would like to say to you but I will stick to a few key points. Those who know me know that if I had a week it would not be enough. Firstly, I was absolutely shocked to discover that a nursing home was the only option for accommodation and care for young people who require a high level of care. While Michelle was in the high dependency ward, she was diagnosed to be in a vegetative state. We were told she would end up in a nursing home for the rest of her life. Michelle had lost the ability to do everything. She lost the ability to walk, talk and eat. Everything else that she did prior to her injury she could no longer do. She was 19 at the time of her asthma attack. She required 24-hour care.

While in high dependency we were told that Michelle could only go to rehab if she responded by blinking or squeezing our hand on demand. We worked very hard to get her to do this and, by some miracle, weeks later Michelle responded. Would you believe that we were then told that she did not respond enough? She had to still go to a nursing home. We could not believe this. How could the system totally give up on a 19-year-old after two months of a traumatic brain injury? She was only two months in and they had given up on her already. How could she be denied the opportunity and support of a rehab program? Was she not worthy of rehab? Was it not bad and horrible enough that Michelle was now trapped in her own body let alone trapped in a system that gave up on her and offered no hope? We had to fight the system really hard not to allow Michelle to slip into a nursing home. All of this was while we were still trying to comprehend and deal with what had happened to her—this horrible injury.

After much hard work and sourcing out information, we managed to secure five months of rehab, where Michelle learned to walk. It was really exciting and really great that she learned to walk again. Sadly, even though Michelle showed improvement, we were now told that she was costing the system too much and that it was time for her to move into a nursing home. I can honestly tell you that, at this point, we were the ones giving up on the system. It did not feel like we were living in the lucky country of Australia.

The task of having to search for a nursing home from my 19-year-old daughter, not my 80-year-old mother, was very traumatic. It was something unheard of. I cannot even begin to tell you what that was like—the feelings and emotions that were going through me. My husband and I simply could not believe that this was happening.

Having to visit a nursing home and find a suitable one for Michelle was a joke, but we were not the ones laughing. Nursing homes are definitely not places for young people. We were continually faced with confronting scenes, such as a person lying on a bed who was all shrivelled up, looking like she was a skeleton. There was more food on the floor and on the lunch table than was going into the mouths of residents, and the smell of urine was unbearable. Yet this was one of the places that the system expected us and wanted us to put Michelle into. These images still haunt me today. I do not believe that these conditions should exist for the elderly, who are preparing to die, let alone a 19-year-old, who has her whole life ahead of her.

With no other choice, and much to our disappointment, we were forced to decide on a nursing home, where Michelle lived for 16 months. During this time Michelle spent 23 hours in bed with very few visitors, apart from my husband and me. We visited her every day and brought her home on weekends. Michelle made no gains in the nursing home, and in fact the gains made in rehab were compromised. It was a very hard time for all of us, filled with great sadness, immense stress, fear and loneliness. Every goodbye whilst Michelle was in the nursing home was heartbreaking. I would cry all the way home.

From day one we were determined to bring her home. We worked hard to learn the skills required to care for Michelle and to prepare the house for Michelle's return. Just days before her 21st birthday we brought her back home, and what a celebration that was. At this stage Michelle was only saying a few words and was walking, but not very well, still requiring a wheelchair. She was incontinent. She was fed through a PEG tube and could not even swallow her own saliva. She required 24-hour care.

Today, Michelle is a vibrant, beautiful person, ready to take on the world. Please stand up, Michelle. We are so proud of her. I love you. Look how far she has come. We are extremely proud of you, Michelle. You are beautiful.

Michelle has regained the ability to walk and talk, and, after six years of being fed through a tube in her stomach, she can even eat again. Michelle has come this far, because, unlike the system, she never gave up on herself, and we have never given up on her. Even though the system let us down many times, we drew on our resources, networks and instincts, and always looked for support outside the system. It was not easy to do all of this and it came at a heavy cost. Michelle's current goal is to live independently.

As there was no system provided solution to fit Michelle's unique needs and challenges, such as severe short-term memory problems, it was left to us to engineer a solution. Instead of planning our retirement, my husband and I have mortgaged our home to purchase the house next door for Michelle to rent. This house was in dire need of renovations and we have been fortunate enough to secure the support of volunteers, who are helping Michelle to make this dream of hers to become a reality. We very much look forward to the completion of the house renovations so we can begin the next stage of supporting Michelle to relearn all the everyday tasks in her new and safe environment. At our age we cannot afford to sit around and wait for the system to make it all happen for Michelle. Her funding has been approved, but like thousands of other Victorians we are waiting for it to be granted.

In conclusion, I would like to add that it makes me very sad to know that there will be other young people who will acquire injuries and who will be faced with the same horror and despair that Michelle as an individual, and we as a family, endured. I hope that no parent goes through what we went through, and that the system improves and finds more appropriate ways to care for and look after our precious young people and their families—a system that will give every person the dignity they deserve, a fair go for rehabilitation, appropriate accommodation and appropriate care. Thank you for listening to me.

CHAIR: Thank you. Dr Winkler, did you want to add anything?

Dr Winkler : I would like to thank the committee for your obvious general interest in this issue. Both the Summer Foundation and the Victorian Coalition of ABI Service Providers really welcome the opportunity to present to the community and discuss some really practical solutions that can lead to long-term systemic change.

In our submission we outlined five key potential solutions around ensuring that young people in nursing homes get access to the National Disability Insurance Scheme; building the capacity of young people in nursing homes; preventing new admissions; increasing the range and scale of housing; and, similar to what has already been said today, the need for that cross-sector collaboration.

We are quite optimistic, given the momentum that this Senate inquiry has created. We are really hopeful that there will be some quick wins in relation to the first two recommendations. We have found that the National Disability Insurance Agency are open to collaborating on some practical solutions to ensure that young people in nursing homes get access to the NDIS, in providing people with information and building the capacity of young people in nursing homes and their families to participate in the NDIS. My colleague, Tom, will be able to update the committee on some recent work in the last month and a proposal to the NDIA that he is working on in relation to those areas. This proposal also provides some practical steps to improve that health-disability interface in the NDIS trial sites in order to prevent new admissions. We see that the outcomes of the work in the trial sites will then inform what should be done on a more national scale. I will hand over to Tom, and then I would like to talk a bit more about housing.

Mr Worsnop : Thank you for the opportunity to appear. I have provided you with a bit of an outline, because there is a diagram to explain some of what we have done. We have put two projects in place in the Hunter trial site and in the Barwon trial site. We go through the process of finding young people who are in residential aged care at the moment in those sites, linking them into the NDIA and taking all the practical steps to make sure that they get an outcome through the NDIS. The diagram that you see in front of you has identified the key steps that we have had to go through with our project workers to make that happen. There are nine steps that we have identified. It only at step five that you really engage with the NDIS—there is a lot of preliminary work that needs to be done prior to actually going to the NDIS.

I would like to quickly take you through some of the key things involved in those steps and some of the solutions that we are now in the process of putting to—

CHAIR: Could you make it fairly quick, because we do want to be able to ask some questions.

Mr Worsnop : I will try to make it as quick as I can. The parliamentary Joint Standing Committee on the NDIS put together some recommendations around information that goes into the aged care sector. We need to make sure that the aged care sector can identify and show where those young people are so we do not need to spend most of our time trying to find them. We have been engaging with the local area coordinator groups, particularly in the Barwon the site, who have a community engagement portfolio. We are working with them to try to figure out how we can train them up and skill them up about the particular cohort that we need to work with. We have been getting a good response from them, too. We need to make sure that eligibility is clear. Most of these young people in nursing homes are clearly going to be eligible for the NDIS. We do not need hurdles to try and make sure that they go through all the hoops to get there. We want to put together a packaged way in which we can get a system where we can unit cost the way in which we can get every one of those young people. If we are talking about the national rollout we are talking about 6,200 people across Australia. We need to be able to make sure that those 6,200 people will all have their needs addressed, and we believe we can do that by doing this work in a packaged way.

It is very strongly, I think, evidenced that you need a person outside of the system—and I have heard this all this morning—to be able to coordinate across systems. We cannot do this from within a bureaucracy; we need to employ people from the non-government sector who can bring together the aged care, housing, health and disability systems together. We have put together some proposals around how we can skill up the planners who themselves are not necessarily aware of the complexities of this group of people. There have been case managers, hospital liaison workers—there have been all types of different people. But you need somebody with skills and experience who can get to the nub of what is required and then put it all together through the different systems. Finally, what we want to do in these projects is to collect the evidence so we can figure out what the policy and practice hurdles are. Then we can work with the NDIA to be able to find ways we can solve this by the time the national rollout occurs.

My final point is that that is all about people who are currently in residential aged care, and that is a finite number. It might be a large number, but it is a finite number. But preventing new admissions into the NDIA is also the key thing. One of the changes that has happened is that we used to have protocols for when somebody was referred—like a number of the cases we have heard today have been—through into the aged care assessment teams. They would then go back to the disability system and say: 'We are going to make sure there is no way that you can do anything before we go ahead and do an assessment.' That protocol has vanished under the NDIS because there is no way the health system can talk directly to the NDIS. We need to find ways in which we can bring these groups back together, to find ways to ensure that if people do have to go into a nursing home, that they are going in there in contact with the NDIS. And that a plan can be put in place to ensure they are going to be looked after for the rest of their lives. There is a bit more detail in there, but that is the essence of what we have been doing.

CHAIR: Thank you. That will be extremely helpful. Dr Winkler, did you want to add a bit more?

Dr Winkler : I would like to reiterate what some of the other speakers have said today—that we do not want to continue to build segregated specialist housing for people with disability. We want housing for people with disability to be part of the mainstream housing. That is the only way we are going to get the scale and range of options that we need for people with disabilities and young people in nursing homes. If all people with disability had access to a greater range of options then a lot of people living in the specialist disability housing would move to more independent options, which would free up those vacancies for people who either choose to live in a more shared supportive accommodation option or who need a more intensive line-of-sight support process.

CHAIR: Do you support the comments that Dr Morkham made—that it should not be disability, it should be housing?

Dr Winkler : Yes. And having a separation of housing and support so people have real tenancy rights; so that if they are not happy with their service provider they do not have to leave their home.

Senator REYNOLDS: I have many questions and many issues. Firstly, thank you very much to all of you for sharing your stories and your experiences today. I would like to pursue is the lack of information that is available right across the board. Mrs Jones, who has worked in the industry, still could not find the information and did not know where to go; that makes it very difficult for anybody else. I think that is one of the things we may be able to make some, as you call them, 'quick wins' on. Ms Petersen or Mr Black: what is the sort of information for you or your families—or for any of you, really—that needs to be provided that is not provided?

Mr Black : First of all, I would like to say I appreciate hearing from everyone around the table, and my heart goes out to all of you. I would just say that everyone needs to be listened to, case by case, because everyone's story is different. Like we have seen this afternoon and, I am sure, you guys have also seen this morning, everyone's case is different. So everyone's case needs to be individualised to a certain forum, but it also needs to be unified in another sense, when it comes to housing. The new support that is coming in, the NDIS, needs to also look at employing people with disabilities who have skills—they might have been architects or builders in the past—and use their knowledge, their skill, to design some of these units. In my case, I lived in a unit that was purposely designed for me and my wife. I had some input into designing this unit. It was flat and wheelchair accessible because I was able to speak to the architect and speak to the builder and say, 'These are the things that we need.' So there needs to be communication with people with disabilities of all types, whether they be physical or through an accident or a mental mishap of some kind. So everyone needs to be listened to, like I said before, on an individual basis, but it also needs to be unified to a certain degree, so it can be packaged so it all fits together neatly like a jigsaw puzzle.

Senator REYNOLDS: So it is tailored to you.

Mr Black : Not just to me but to everyone with a particular disability, like me. I was born with this disability, so it is different for me. But there are kids and younger people that have multiple disabilities that need special, organised care. Looking into the future, there needs to be philanthropic money thrown in with government money because, let's face it, government cannot do everything. They have a certain budget that you guys have to work to. But there needs to be a system where that package is on an individual basis, and it needs to be unified to look at all the cases that need help.

Senator REYNOLDS: That makes a lot of sense. Thank you very much, Mr Black. Are there any other suggestions? What would you like to see and where could you source it from?

Mrs L Jones : I would like to see more communication between the health service providers. For instance, both of our children were diagnosed within the same week at Royal Melbourne Hospital. From that time on, we heard nothing—except, later on, a physio rang and said, 'How are they doing?' I said, 'How are we doing? We're not.' I said, 'What we're trying to do is maintain them in flats and treat them as respected young people should be treated,' and she said, 'Nicole shouldn't even be crossing the road on her own.' But they did not tell us that. There was nothing after the diagnosis. There was no counselling. There was no support. Why couldn't they have spoken to, say, Barwon Health in Geelong or housing people in Geelong? Again, I make that point: there needs to be communication in our local communities to say, 'These young people aren't going to fall through the cracks. We can't have that anymore.'

Senator REYNOLDS: Everybody is coming to this system through different pathways. You all find there is a lack of information. Do you also find that there are many different people to deal with?

Unidentified speaker: Yes.

Unidentified speaker: Yes.

Senator REYNOLDS: You have someone from the health system, someone from the hospital—do you find that, Mr Black?—and they are not talking to each other.

Mr Black : They talk to each other, but it is getting more and more difficult to find people that are skilled enough to run it—in my case, to find a case officer. I have dealt with the department. I am constantly writing to the department, all the time, asking for a case officer to come on board. I used to have a case officer but had difficulties because my wife had bipolar and had other mental needs with depression. My case officer had to be let go because she could not work with my wife when I was having a meeting with her at the same time, so now I have to go backwards to go forwards to find another case officer to help me. I have physical needs. I cannot write, because of my cerebral palsy. I can verbalise, but I need someone there to be my hands. You need to write letters; there is only so much you can do on the telephone. I like to see people face to face, talk to them face to face and actually see whether they are taking an interest in what I have to say. But again there need to be workers that are working with people, whether they come through the hospital system, are born with a particular disability or need help because of accidents. Staff need to be skilled. They need to be able to listen—that is the most important thing—and then act on the person's needs, whatever they may be. Thank you.

Senator REYNOLDS: No, thank you. So it is not only looking after a single person; it is continually different people. Other people have described it as like Groundhog Day; you talk to one person and then they leave, and you have three other people to try to sort it out.

Mr Black : That is exactly right.

Senator REYNOLDS: But it is not just you; it is your wife, so having a look at family units or if you have children.

Mr Black : Exactly.

Senator REYNOLDS: It is looking after carers and the wider family unit.

Mr Black : Even the carers that are looking after the people also need assistance. They need a network, whether it be of other carers or of social workers that they can talk to or even a network where the carers can sit together, have a cup of coffee and share experiences and ideas. Those ideas can then flow backwards to the department, and the department could act on those ideas. So we need to listen to a lot of voices, but those voices need to be acted upon when they come forward.

Senator REYNOLDS: Thank you. Ms Petersen?

Ms Petersen : So far, all my questions have been answered, but I have not any experience with group homes.

Ms Finis : Just to elaborate, one of the things Ms Petersen is concerned about is that the idea of moving into a group home is a very abstract notion for her. She has a lot of unanswered questions about what the reality of that experience would be like.

Senator REYNOLDS: Thank you very much, Ms Petersen.

Mr Black : Again, I can answer some of those questions.

Senator REYNOLDS: I will just quickly go to Mrs Newland. Again, thank you very much for your testimony. I was going to say thank you for sharing Michelle's story in the photos, but it was wonderful that you brought Michelle here and we could actually see. So welcome, Michelle.

One of the issues that you raised and that has been raised with us a lot is that interface between health and rehabilitation. Not only is there a lack of information but obviously hospitals have pressure on the beds, and they are looking for fast moving out. A number of people have expressed similar issues. You are not going to give up, but you need the rehabilitation and the support—in this case, to give Michelle or Ray and Leona the support they need. What would have made a difference in your case? Once Michelle had the asthma attack and the ABI, what would have made a difference to you and to Michelle right up-front at hospital? How could things have been different for you?

Mrs Newland : I guess, in many, many ways. Looking back now—it was 13 years ago—I remember that doctor in the ICU saying to me, 'You won't have the same Michelle again.' I did not know what that meant. I did not know what an acquired brain injury was. Perhaps I was naive, but I had never known anyone to have an acquired brain injury. I did not know what it was. I did not know what it would lead to or what would happen.

You just keep going. First of all you think you are in a nightmare—it is not happening and you do not understand it. And you are just living on every word that the health professionals tell you, but none of it makes sense. And you are moved on. It was just a journey of 11 days in ICU and then high dependency, and you just go along with what is happening.

I wish we had had someone to just talk to us, to say: 'We're going to do this.' We had doctors coming in and giving us nothing but bad news and no hope whatsoever. I understand that their diagnosis was correct—she was in a vegetative state, and all of this was right—but I wish we had had someone talking to us as human beings and saying, 'This is the situation, this is what has happened, and these are the options.' All we felt was like, 'Okay; we are getting shifted from here.' Then we got a letter in high dependency to say, 'Michelle has done so many days, and your time's up.' Well, what did they mean? I did not even know that that existed. 'Time's up'? Time is up for what? She was still very sick. That is when they said, 'She's going to a nursing home.' And you know what? It is just horrible. It is devastating. And you do not know what to do. 'How could you send her to a nursing home? What about rehab?'

We really fought hard. We pleaded. But the neurologist said, 'No, no—unless she responds,' and when we got her, we sat with her 24 hours a day, saying, 'Come on, Michelle,' and talking to her. She was in a coma. We would say, 'Come on; squeeze my hand. Blink your eyes. Come on.' And, finally, when she did it, can you imagine what we felt? And then when we went to him and we said, 'She has responded,' he turned around and said, 'Yes, but not enough.' Not enough? The arguments we had! And then when he was still insisting she was going to a nursing home and we were looking around, who was there to help? Nobody. And then we were getting doctors saying, 'Michelle's brain has shrivelled down to a 60-year-old's,' and we were getting all these things. There was nothing to keep us afloat.

I do not know what the answer is, but I just think: give us a little bit of hope, and just say, 'Okay; this is what we can perhaps do.' Then when she got to rehab, she was sick every day in rehab. Michelle vomited three, four or five times a day in rehab while she was learning to walk. So that was extraordinary. But then they turned around and said, 'She is costing the system too much.' There were 12 people around a table, and I said, 'You disgust me. What do you mean, she is costing the system too much? So where now?' And they said, 'Home, or nursing home.' The home was not ready; we could not take her home. When we took her home on weekends, I struggled to wash her and to do things. It is almost like: you cannot give up on someone you love, but you are lost. I used to wake up in the morning and say to my husband, 'Is this a nightmare? I hope this is a nightmare that we can wake up out of,' because there was really no hope. There were some good social workers, but the time you saw them and the time they gave—and nothing made sense. Somebody talked about a slow to recover program. What was that? I thought it meant Michelle was going to be slow to recover. No; it was called a 'slow to recover program'. And they start talking about funding and this and that—you have no idea.

It is too traumatic to take that all in, and at the same time there is no-one really making any sense. You just need somebody to say, 'These are the options here, and this is what might happen.' In relation to searching for a nursing home, we were given a list of the best homes in the western suburbs. I can tell you that the best in the western suburbs were disgraceful. So then who is going to help? What do you do then?

Senator REYNOLDS: Thank you. All I can say is that I think your experience and the experience of Michelle, Michael, Colleen, Ray and Leona are absolute testimony to the power of love and hard work. It makes me wonder what happens for all of those who do not have your perseverance and ability to fight.

Mrs Clancy : We were in the Alfred hospital. After intensive care for a month, a coma for a month and then another few weeks before we were taken down to the ward, she eventually got transported to the ward. I was just elated. I was standing at the end of the bed, and I just said to the doctor, 'It's wonderful that we're out of intensive care and down in the ward,' and he said, 'You know that you're wasting your time being here. The pneumonia will kill her.' I just said, 'You don't know who you're dealing with,' and stormed out. That is exactly what you get. Doctors see the cases all the time. They do not know; surely they must know by now. When we walked in for our check up, I said, 'You just hand it to him, Colleen.' I was itching not to say anything, and I reminded him he was the registrar. I said, 'Do you know what you said?' He said, 'No. I didn't say that'.

Senator BILYK: I just want to say thank you to all of you for your stories As other people have said, it really is important for us to hear it. I mean, obviously there are huge issues. Coming up with some recommendations to help resolve those issues is going to be quite a challenge for us as a committee. Certainly, hearing your personal stories is helpful, and we are all very aware how hard it is for a lot of people to do that. If I had a hat on, I would take it off to each and every one of you. I am a bit overwhelmed, to tell you the truth, and at the moment I cannot actually think of a clear question.

Senator MOORE: That is a true indication.

Senator BILYK: Having said that, I would like to ask—and you have all alluded to it in different ways—about that issue of siloing of the medical profession against the rehab providers and the allied health professionals, and the lack of access to those things. In an ideal world, what would you like to see? If your young person had to be in a facility and could not be cared for at home or live independently, what would the best world picture be for you?

Mr Black : Could I just say a couple of things to do with that. I think when someone goes into a facility, whether it be a nursing home or not—and I think that a nursing home should be the first step and then they go into a residential home—there should be access for them to go down the street and have a cup of coffee with their friends and their families.

Senator BILYK: They should be able to retain their independence?

Mr Black : Yes, independence is the most important thing that they need. They also need mental and physical stimulation, which are very important. I think that the initial focus should be on therapy for both the mind and the body to get them stronger and as independent as each person can be, depending on their case. Then they need to be reintroduced into the community, with the channels kept open so that if anything changes they can be looked after in whatever way they need to be. We need to get young people out of nursing homes and into a different environment, even if that is like a nursing home—but they have to have other young people around them so that they do not feel so alone.

Mrs Newland : Just on that question: it brought to my mind that when Michelle first got sick she was granted three hours of physio, three hours of OT and three hours of speech. Looking back now, it was the wrong time to give her that. She was really sick—she needed to rest. We were told that whatever she gained in the first six months of her recovery is what she would have—do you know that saying? We were desperately trying to get all this in and trying to get her to come alive again—to be part of it. But that is so wrong! That is not right.

Now she could do with three hours of physio a week and now we are fighting for funding. That funding at the beginning was not necessary. She was so sick that her body needed to recover.

Dr Winkler : Yes, traditional rehab is normally three months after your brain injury and then you are meant to have recovered and you get nothing. Whereas, lots of people like Michelle actually are not ready for that rehab, and they make better use of it a year later, or 18 months later.

Senator BILYK: It needs to be more focused on individual needs and requirements?

Mrs Newland : Exactly, yes—individual—

Dr Winkler : Recovery is different for different people, but the system is not flexible.

Mrs L Jones : I agree with Ann, earlier. There was no single person who ever sat down and said, 'How are you doing?' We had people calling from DHS, saying, 'Do you consider that your case is urgent?' And we would say, 'Of course it's bloody urgent. It was urgent last time you rang.' They would ask who I spoke to last time and then say, 'Oh well, they're overseas—they're on holidays.' It was someone new coming in; we went through this for three years with people wanting to know.

And yet they knew nothing about us. We had downsized; I had cardiomyopathy—could not even walk 10 minutes without gasping for breath; and two kids with acquired brain injury. No-one asked about it. People asked, 'Well, why don't you have them at home? Why don't you work something out?' That is where we needed the help: in the initial stages—when we were in shock, knowing what was ahead. We needed someone to sit down and say, 'Now, this is what may happen. This is the course that we can take.' There is nobody doing that. There are social workers at the hospital; they sometimes spoke to us—very rarely. Our GP did not know a damn thing—

Mrs Clancy : No.

Mrs L Jones : We did not have any people who were able to speak to us, genetically, because it was such a rare disease. But, still, we could perhaps have been put in touch with other people—perhaps agencies. Anything we did we had to look up ourselves, and these two ladies here testify to that.

That is not good enough, because we are in shock, we do not know where to go—

Senator BILYK: That is right.

Mrs L Jones : and it does not even matter what we do, who we are or our knowledge base; we are in shock and we are witnessing something that no parent should ever have to witness. We need that calmness and that leadership, and we do not have it. We do not have local groups of people who form and say, 'This is what we can do in our community when people are struck down with acquired brain injury.' There is not any planning.

Mrs Bellert : Sorry, can I just jump in quickly? I feel like I have been missing my few opportunities! I have been writing notes—I am not really one for jumping in, but I will be really quick. Basically, what I hear from everyone—and I completely agree—is that we need a constant point of contact throughout the whole process. And the process can go from some cases which take a year or two years—which is great—to some cases which take 10 years or 12 years. Someone needs to be there from the start—I do not know how to work that—liaising with everyone, not just you, but the health organisations and all the people that you need. I know it seems impossible. I do not understand the system itself. But someone needs to be that person that you can rely on to go, 'Okay; I'll handle that for you,' especially at the start, because it is so hard. You have got all these thoughts going around your head. I was three months pregnant. I am pretty sure I had pregnant brain! But I was just too busy to worry about being pregnant because I was worrying about my husband. But you need that one person that you can just call and say, 'I do not know where I am going with this; where do I go?'

Time changes things with brain injury injuries. Maybe at the start there is nothing. I had the same thing with Michael and the blinking. They said, 'Once he can blink, you are right; you're on the right path.' Michael started blinking maybe a couple of months into it. He started communicating with blinks. We knew he could understand. He could not squeeze, but he could blink. I thought, 'That's great.' Do you know what I mean? I had hope. And they just shatter you. They have to be pessimistic, because they cannot be giving you false hopes, but at the same time they go in the opposite direction. They just really ruin the whole experience, I suppose!

Once they are medically stable, they kick them out of hospital: 'You're medically stable, so therefore we don't want to deal with you anymore. You've got to go into a nursing home and have someone else worry about you.' But I was lucky. Michael got into transition care, so he got a few hours a week of physio and stuff like that for the first three months. But he was struggling to deal with his breathing, and he had coughing. I assume—because I do not have a brain injury—that everything was an effort. If you are worrying about coughing, you cannot worry about moving your arms or talking or whatever. Every time he concentrated on something, he would hold his breath and then that would lead to a coughing fit. They are all hurdles and obstacles. It is all about time and constant communication, with someone checking in. That was all I wanted to say, very quickly.

Senator MOORE: I have two questions. I will get the one to Mr Worsnop out of the way first. We heard from Summer in New South Wales, about the Hunter plan and how they were doing it, which is the same thing. Has the work that you have done, which was actually stimulated by you to ensure people were not lost in the system of NDIS, now been mainstreamed into the NDIS model? Are they going to, as a result of the stuff you have done here, make that standard practice?

Mr Worsnop : I think that is the big challenge.

Senator MOORE: So that means no?

Mr Worsnop : We are in the process of navigating with people within the NDIA to actually find out how we can embed it within their system. I think there are some parts of this that actually can be embedded, and there are building blocks that exist. Like we heard from the continuing care pilot this morning, there are building blocks that are in place. I think the big challenge, though, is which of the building blocks need to be placed within the NDIA and which of them need to be in an outside agency that can navigate across systems. I think we are getting good response from both the policy level at NDIA and also the practical level, but there is nothing in place at the moment. We are hoping that that will change.

Senator MOORE: And now for carers. You have all had the experience and you have also had the fortitude to keep fighting in the system and to share your experience with others. What is there in the current system to support you as carers, as families, in terms of the process?

Members of the audience interjecting—

Senator MOORE: I do not think what we are getting in the back there can go on Hansard, but I think some dismay was expressed! But, in terms of the families and what could be, what do you think could work? Apart from anything else, you are all so busy just getting on with it and actually thinking of your family member who needs you. But there must be some way that there is something in the system that takes into account the extraordinary shared knowledge that you have had. Each of your cases is different. Mr Black, it is absolutely true that there is no one size fits all, in anything—clothing or anything else. It just does not work. But there must be something. You have all expressed very similar experiences and emotions and all that. What should we put in there to look after the carers?

Mrs Clancy : I, after 17 years, have just tapped into Carers Victoria.

Senator MOORE: How did you stumble over them?

Mrs Clancy : They are very prevalent with their brochures at doctors' surgeries and such. I actually rang them and I got registered. It has taken three months and I got a phone call yesterday to say that I can have an appointment. I am not sure whether it will work.

Senator MOORE: Carers Australia has been around all that time. After 17 years of being a carer, were you just too busy or did you not identify—

Mrs Clancy : You keep thinking, 'This is your lot in life. This is how the cards have been dealt.' I have four other fantastic kids and a great husband, but it gets pretty heavy on them. You learn not to share too much with them because it becomes a burden for everyone. Why have everyone burdened? It is better to go to the doctor. I have tried counselling. You go to a counsellor and 'dump your load', I always call it. You do not hurt anyone. You do not offend anyone, but you get rid of it. Sometimes you come out with a couple of strategies that you can put in place. But you really just keep going. You keep going, and I would say everyone here in this room keeps going. Please god, we can keep going; but it is very hard.

Senator MOORE: There is a stage where you do not feel there are any options. You just have to keep going.

Mrs Clancy : Yes. They are your own. It is the guilt of your daughter, or any of them, being in an aged-care facility. It stinks.

Mrs L Jones : That is a good point.

Mrs Clancy : It does stink. The guilt is awful. I cannot believe we have been there three months. I cannot wait to get her out but we have not found anywhere. Where is there, other than bringing her back home? But the words were: 'She will go way down on the DSR' if I bring her home.

Mrs Bellert : Really?

Mrs Clancy : Yes. That is what I have been told. I do not know—

CHAIR: I am pretty certain Ms Petersen is preparing something as well.

Mrs L Jones : I just wanted to agree strongly with that because we were offered advice about the carer support. Because our kids were in nursing-home care, we were told we were not eligible because we were not caring for them in our home. There have since been other groups—I think brain groups and BrainLink—but I do not feel I can go to those because there are dedicated people there who have cared for their children or their husbands in their homes, and I feel rotten. So I cannot go. That guilt and shame of having placed our children in nursing-home care is what really bites.

Mrs Bellert : There is a big separation between people who are being cared for in a nursing home and people being cared for at home. My husband might have been in a nursing home but I was there every day, six hours a day, making sure they were doing their job properly. I know I am a bit of a nag but at the same time, he cannot voice his opinion—he cannot tell you if he is in pain or if he is uncomfortable or if he has gone to the toilet. They are not checking in on him regularly so someone has to be there. If that is not identified as caring, I do not know what is.

CHAIR: Ms Petersen wants to make a comment.

Ms Finis : This is a response to Senator Bilyk's earlier question about what could make it easier, given that Sam is currently in a nursing home.

Ms Petersen : More rehab. So often there was too little physio for me.

Ms Finis : More rehab, and Sam would like to be getting more physio.

Senator MOORE: Ms Petersen also told us in her submission what her perfect world would be, so she has already told us that. Can I just go back very briefly to this whole carer's thing. There is a difference between getting a carer's payment, which is precluded if you do not have the person you are caring for at home, and getting some form of support around the issue of caring—in particular, for people who are doing so much caring in a different way. I am trying to search in terms of the carer's element because the NDIS process, which we all talk about, is focussed on the person with the injury or the condition. That is their whole focus. It does not really take into account their family or their carers or the people around them. We are trying to find out how we can better focus that system. If you have any ideas—and you sure as hell have given us a lot today on the work that you have—just get it back to us, and also get it in to the NDIS. Do not let those people rest. Write to them, email them, talk to your people—their job is to find out what you need.

Mrs Bellert : I definitely think, after coming into contact with the Summer Foundation and meeting all of these wonderful people who have shared the same experiences, that that has been good. It is like a sort of support group, but not a regular one that I have to attend or that is mandatory or where I have to talk about my feelings. It is just good to know that I am not the only one. Being a 30-year-old wife caring for my husband and my two children, I am very isolated in my social circle. I cannot relate to anyone in my life anymore, because I am not a 30-year-old woman! I do not know what I am, but I can relate to these people better than I can relate to people in my circle.

Mrs Clancy : That is a very, very strong point. Even in my mature years, and in these 17 years, your life shifts and you do become very isolated. We had all these friends—not anymore. They are too busy, and you are left holding the pack of cards. So you just keep going and you make the most of your little bundle, but that isolation is really, really strong. It is really strong.

Unidentified speaker: Because you cannot relate to other people.

Mrs Clancy : No. They do not understand what you are doing.

CHAIR: Mrs Jones, you were talking about the wheelchair that you could not get from NDIS.

Mrs L Jones : Yes.

CHAIR: Can you get back to us about those details so that we can chase it up with the NDIS?

Mrs L Jones : Thank you.

CHAIR: That would be useful, please. There are three of us that are on that NDIS joint parliamentary committee, so we will see what we can do.

Mrs L Jones : And the lost bed in Karroong?

CHAIR: We might be able to perform miracles!

Mrs L Jones : Thank you.

CHAIR: I was having a conversation with a mother last night who told me that she had contacts for her son that she looks after—22 separate contacts. Is that a shared experience?

Mrs Bellert : You do lost touch with half of them along the way as your situation changes, but you have to keep repeating it.

CHAIR: She said she had them on the wall. That sounds like it is a common experience.

Mrs Clancy : Yes.

CHAIR: Ms Petersen?

Ms Petersen : Carers should not have to be carers. They should be mums, dads, brothers and sisters.

CHAIR: I think that is a very good point to finish on. I saw a lot of nods around the room. There was a lot of support for that statement, Ms Petersen.

We could keep talking until midnight. Thank you so much. I said it when we opened, and I will say it again: your lived experience is the most valuable evidence that we get in terms of really understanding what is actually going on. We really value it and we really appreciate it. We also understand the toll it takes on you having to tell people your experiences. We really do value it. Thank you.

Mrs Clancy : Where will this lead?

CHAIR: We will be making a series of recommendations. We produce a report. We do not tell every single account, but we will come up with a series of recommendations. The other thing, importantly, with this particular inquiry is that we have an understanding with the joint parliamentary committee on NDIS—we are feeding-in our recommendations in not just to the normal Senate process but also to that process, because so much of the work that we are doing intersects with the work that the NDIS is doing and that the NDIS joint parliamentary committee is doing. That is why we are so keen to push the June deadline, because that committee, of which there are three members here, have a deadline for June—and for feeding into that process.

Dr Winkler : We will make sure that you are up to date and know about the report and the progress.

CHAIR: Mr Black?

Mr Black : Can I ask: when will the whole NDIS program be rolled out? Not in just sections—when will, say, Victoria or New South Wales and the other states get their turn in the NDIS system?

CHAIR: It is 2017-18. Different states are now coming on a bit earlier. I am not quite sure about New South Wales. They, too, are a little bit different now. I think they have a bit of an accelerated process.

Senator REYNOLDS: Maybe you could take some homework back on that.

CHAIR: Yes, we will take our homework back and get back to you! Thank you very much.