Note: Where available, the PDF/Word icon below is provided to view the complete and fully formatted document
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

BAJAY, Mr Pankaj, Private capacity

BLACKWOOD, Mr Alan McKenzie, Policy Director, Young People in Nursing Homes National Alliance

BRIDIE, Ms Winnie, Information and Policy Support Officer, Children with Disability Australia

DE CRESCENZO, Mrs Nancy, Private capacity

DE CRESCENZO, Mr Tony, Private Capacity

GOTLIB, Ms Stephanie, Chief Executive Officer, Children with Disability Australia

MORKHAM, Dr Bronwyn, National Director, Young People in Nursing Homes National Alliance

VEITCH, Mrs Wendy Joan, Private capacity

CHAIR: Welcome. We have your submissions—thank you. I invite you to make an opening statement. Most of you were here during the last session and so you saw how we operate. That is the way that we would like to continue to do it. If a question is directed at someone but you want to answer it as well, please feel free to let us know that you want to make a contribution. Dr Morkham, let's start with you.

Dr Morkham : Thank you to the committee for having us back again. When we spoke with you last in Sydney you asked us to go away and consider some of the issues around housing and safeguards, and we would like to talk to you about that today. It was very interesting to hear that previous discussion, particularly the comments from our colleagues in the health sector. We would like to make comment on some of those issues, particularly on advocacy and cross-sector coordination and the need for that to be part of the solution for this issue. Would you like me to start now and make a few comments?

CHAIR: Yes.

Dr Morkham : I am going to talk very briefly. I want to make three comments around housing. My colleague Alan Blackwood will talk about the safeguards issues. Firstly, I think it is very clear from the previous discussion and what we have already outlined in our housing paper, which we have included and tabled as part of our submission, that we need a range of options on the spectrum for this group and for all people with a disability. It is really a matter of horses for courses.

Secondly, we need to keep people in their own homes—not only is it better for them, but, at an economic level, it is a lot cheaper. If you look at the CCP project that was run as part of the Younger People in Residential Aged Care initiative in New South Wales and Victoria, there was an average cost of $20,000 per person to keep a younger person out of residential care as opposed to somewhere around $150,000 to bring them back into the community from a residential care setting. There are economic implications for keeping someone in their own home, with the supports they need. It is not just about disability supports; it is about the health supports, the housing supports and the range of other supports. It is about the suite of services that need to wrap around that person to keep them safe and well in their community.

This point is, I think, a really important one and needs to be said loud and long, and that is that we do not need the disability sector to pursue housing anymore. The disability sector should not be doing housing. We should be looking to the housing sector to do that. We need to be working collaboratively with developers, builders and local councils and the range of other people with housing service organisations whose business it is to develop and build housing and to develop the innovative responses we need.

The YPIRAC program has demonstrated absolutely clearly why disability services should not be delivering housing anymore. Most recently, we have had one of the final YPIRAC group home developments delivered in New South Wales—nine years, it took. We do not have nine years to wait. This is not their expertise and it should not be left there anymore, so we want to see disability service providers completely de-linked from housing development and delivery. It should not sit with them at all.

A fourth point is to reiterate that aged care is going to remain one of the options on the spectrum for this group for some time to come, quite pragmatically, because we just do not have the resources available yet for people to live in community settings. And I do not just mean housing, I mean the health services that we need to have. Health outreach services in the community that enable people to live there, safely and with wellbeing, simply do not exist yet. And it was interesting to hear our colleagues from the health sector talking about some of these issues from their point of view, the pressures they experience to discharge people very quickly, and how aged care is often the default option. We need to make sure that aged care is not the default option; that going home is the default option—but where aged care comes into play, that it is seen as a transition option. With that, comes a recognition: we simply have to get our heads out of the sand around this and look to aged care to change, and support aged care to deliver what it can. And I think we have said previously that aged care can provide a very effective hotel service for these young people: it can provide a roof over their heads, it can provide the nursing overlay that many of them need, and obviously food. What it cannot provide is community access; it cannot provide higher staffing levels; and it certainly cannot deliver rehabilitation—just as three examples. So we need health to come into the nursing home, we need disability services, through the NDIS probably, to come into the nursing home and work collaboratively with aged care, so that we can develop a comprehensive service response as a transition option while those other community-based opportunities are developed.

I will not go on any further than that, but we would really like to make some comment, as we go along, around the advocacy issues, particularly around cross-sector coordination. Again, the paper we developed with Sydney University—I think we have included that as part of our submission—but really it goes to the heart of that need for systemic advocacy—for people who are skilled in working across the different sectors. We have called them 'wranglers'—system wranglers—where you have people who are very skilled, who know about the different ways those health, housing, disability, and education sectors work, and can go in and work with people in those sectors to extract the services and supports each individually provides, but to deliver them in an integrated way for the person. As we go along we would appreciate the opportunity to speak a little more about that. Thank you.

CHAIR: Thank you.

Mr Blackwood : Thank you. Mine is a bit of departure from the housing issue. In Sydney, we heard some stories from families about their experiences living in aged-care and disability houses where, you know, the themes really were around neglect—and it is, again, in a funded service. We had one family talk about the fact that the mother had to go in seven days a week to actually give her son a meal, because even though her son was being funded by both disability services and aged care, his care was still inadequate. So we just have thought a bit more about some of the reforms to safeguards that we need to make sure that, regardless of where people are, there is actually some degree of safeguarding.

I think it has been recognised recently, with the public airing of a lot of the abuse cases in Victoria, that the standards systems we have are fairly weak. There are a lot of voluntary aspects to it which mean that there is a lot goes on that is not detected. There is not a culture of reporting, there is not even a high level of training so that people identify where abuse and neglect actually happens. In thinking about how we might move to a solution, we have had a look at the occupational health and safety frameworks—and if you think about the cultural change that that movement has brought about: you know, there are clear obligations, penalties, and definitions about responsibilities in the occupational health and safety area. And they have located the responsibilities with boards and with officers of organisations who are running a business. So you have got instances where there is personal, civil and criminal liability, and people can go to jail for up to five years and have fines up to $600,000 under the national Model Work Health and Safety Act. Also, it talks about the need for those officers to resource the risk mitigation in their organisation.

So there is now an awareness because the responsibility for safety is now located in a place in organisations that care about it. You will see a lot of board and management agendas in organisations and even in the care fields where OH&S is a standing item because it matters to the board and matters to management. We have seen with the recent cases at Yooralla that there can be some horrendous abuse and neglect of people and yet there is no chain of responsibility or location of responsibility for standards. It may be require some spot checks in aged care or voluntary reporting or standards monitoring after the fact in disability services

We think that, if we have a system that has created that cultural change, awareness and community expectation around safety at work and we could develop a companion scheme to the OH&S regulations which boards and senior management of care providers can get used to living with and makes them responsible for the safeguards and the proper attention to detail around providing care and support, it would result in change. What we have seen with Yooralla and the other recent cases is that there is a tendency just to blame the perpetrator—to use the bad apple case. This says, 'It's the worker. He slipped through the net. It's a terrible thing, but it's basically the worker's fault.' When that happens three and four times in the one organisation, the bad apple excuse wears very thin and you cannot keep using it.

In Victoria, a scheme was introduced by the previous state government called the Disability Worker Exclusion Scheme, which covers with how to deal with bad apples. You identify a bad apple worker and you put their name on a register so no-one else employs them. Yet you have companies that are receiving millions of dollars for providing services that bear no organisational, corporate responsibility for making sure that their care is up to standard. So we think that the solution to the safeguards issue is not necessarily in standards monitoring from whichever sector it is—from the aged-care sector or from the disability departments. It actually lies in corporate governance. We could beef that up so that, if you are running a care organisation, your key responsibility is to your clients. It should not diminish your responsibility to the workers, but at least there should be some sort of parity such that, if you are running a business, it is safe for everybody.

We have looked at the legal framework and there really is not any redress. Even though there is a vague duty that a care provider has to people other than their workers in their workplaces, it would be very difficult to prosecute them for the cases of abuse and neglect, because it is not actually part of the duties that the staff are prosecuting. There is a big hole there that we think needs to be addressed but, again, outside the disability and aged-care systems.

Mrs Veitch : I am going to read my brother's story. My brother, Trevor Dodson, suffered a cardiac arrest in July 2009 and a result of the lack of oxygen was severe hypoxic brain injury. He had just turned 51. He spent four months in ICU and wards and he was fortunate enough to be moved to what we were told was a rehabilitation centre, Gardenview House. In fact, this was a nursing home that alleged to be a rehab centre. We thought Trevor was going to be given all the therapy that he needed for up to two years. He desperately needed speech therapy as he was unable to speak, but it took them three months to assess him and provide a therapy timetable. The centre's lack of rehab capacity was evident almost every time we arrived. Trevor would be in his room watching his TV and no rehab was being delivered. The reasons were varied: the therapist was sick; they were on leave; they were double-booked. He even had speech therapy timetabled three or four times a week, and they had no speech therapist on staff.

Trevor went downhill whilst he was at the rehab centre. He was drugged to keep him quiet. We often found him spaced out and drooling and yet, when he went away for weekends with his twin brother, this was never needed. He was prescribed medication to stop him from being incontinent, and his entire digestive system shut down. Trevor was now in and out of hospital with a twisted bowel until, finally, a section was removed. He started to lose weight, going from 103 kilograms down to 73 kilograms in a couple of months. Medication was necessary to push the food down and enemas needed to remove everything. We were told he was slowly dying, and that no-one knew why. We paid for a carer out of his disability pension to sit with him and assist with his meals to ensure he received the nutrition he needed. His weight stabilised and showed us that his weight loss was caused by not feeding him properly, not because he was in a palliative state.

I was told that Trevor had no ability to process anything, had little cognitive function and could not be understood. Yet I found that he could learn—not by telling him, but by showing him. We felt that they had given up on Trevor because they had misread his condition and could not deliver what he needed. The stay at Gardenview House was meant to be for two years. Trevor was there for 3½ years because I refused to allow him to be placed in the only nursing home the consultant in charge would consider, one that was totally inappropriate. I gained VCAT guardianship so that Trevor could not be moved without my permission. By this stage we were practically his only visitors, as his friends had stopped coming. Finding a nursing home was a nightmare for me. The only assistance I was given was when a staff member gave me a few pages of nursing home listings from the internet. Even though we live in the north-eastern suburbs, few of these homes were anywhere near us. I finally found him a very good nursing home 10 minutes from our home after visiting, ringing and emailing dozens of nursing homes that I had looked up myself.

At this place where he still resides, Trevor has his own room which, I understand, is a rare treat for a younger person on the DSP and with no assets. We were shown places where he would have had to share a space with up to three elderly people—that is with just a curtain in between them. Even though Trevor lives with people much older than himself, he is happier now. Despite this, it is still a major compromise. There is no therapy unless we pay for it ourselves, and the activities are generally unsuitable for him. The staffing ration is inadequate to meet his needs properly. But on the upside, the staff that are there go out of their way to encourage him to join in the activities he enjoys. The fact that the staff do what they can is a good thing for Trevor. It is, overall, a good interim option for him until more appropriate accommodation can be found. We do not see this as a permanent home.

Because of the lack of therapy and the institutional living he has had to endure over the last 5½ years, Trevor is now very institutionalised. He is showered, shaved, dressed, toileted and medicated by other people. He does have capacity to be more independent and to do things for himself, but he needs encouragement and prompting. I can do so when I am with him and he responds well, but the spartan service model of aged care does not allow for this. This is one of the greatest tragedies of someone like Trevor being in aged care when he needs to be in a recovery place.

Some recent good news for him is that, after 5½ years, Trevor has been accepted on to the Slow to Recover ABI program which can deliver a modest amount of therapy for him—we have been told it will be one hour of speech therapy a week. This is good, but it is five years overdue. We should not have to rely on the goodwill and enthusiasm from individual aged care staff to deliver brain injury recovery, as Trevor has done. In the 21st century in Australia we need to do better. We have the rehab knowhow, but it is rationed severely. It is probably denied to more people than it is offered to. How hard can it be to deliver the rehab services like those my brother desperately needs? If this inquiry achieves nothing other than finding a way that rehab can be delivered for all young people who need it, it will be have been a runaway success.

CHAIR: Thank you very much.

Ms Gotlib : Good morning, everyone, and thank you very much for the opportunity to speak with you today. For those of you who do not know CDA—Children with Disability Australia—we are the national peak body for children and young people with disability aged nought to 25 and across disability. A lot of what we have said has been covered brilliantly by Dr Morkham here. We have quite a few shared views around the subject, so I will try not to repeat them. I am going to speak briefly around the main issues that were raised in our submission which have not been raised today as yet.

There are only a small number, statistically, of young people who live in nursing homes—young people as we define it—in that there are 28 people aged under 29 living in residential aged care. They are the latest statistics. The most recent statistics do not report anyone under the age of 20 living in aged-care facilities. CDA believes, however, that it is important that this inquiry considers the experiences of children with high medical and/or care needs who live at home or in other residential settings. While these children may not be recognised in the official data, CDA is concerned that this group are presently at high risk of living in residential aged care in the future because of the limited accommodation and care options available.

There are a huge number of kids that we know of who have very high care needs who are very ably cared for by their families, but do not let me give you the impression that there are adequate services and supports. As Bronwyn said, there are simply not enough accessible and appropriate accommodation and support options for young people with high-level medical and/or care needs. Presently, families are not supported adequately to provide care, and relinquishment results when another crisis occurs. We see young people go by default into residential care options.

We need to ensure that a young person's life is not defined by their care needs. Services need to be wrapped around the young person's life, not their life wrapped around the only appropriate or inappropriate accommodation service and support available. Any action taken to address the issue of young people living in residential care requires careful planning of interface issues and co-funding arrangements. Bronwyn spoke about the need for cross-sectoral planning. Young people typically use a range of services within the community as they go about their lives. It is vital that we ensure not only that more accommodation options and appropriate options for young people with medical and/or high care needs exist but that all the accommodation options available enable and facilitate these typical experiences. So we need to be looking at a cross-sectoral approach. We need to be looking at disability health, education, employment, children and family services—the full gamut.

Just to make a point which I am sure has already been made to this inquiry, the increase in services and support available through the NDIS will not by itself resolve the issue of young people living in residential aged care. While we all have high hopes and are very excited about the NDIS, and it is certainly providing great things for many people, it is not the answer for all of the issues which arise in a young person's life.

There are lessons from other accommodation and support models in Australia and internationally. We mentioned a couple in our submission. A program that I am quite familiar with, because I worked there a lifetime ago, was the Family Choice Program. It is a program for children with high-level medical care needs which provides care within the family home. I think there are some real lessons from that. There is also the—what is it called?

Ms Bridie : The Benambra Intentional Community in Canberra.

Ms Gotlib : Yes. I think that is a really interesting model which is really worth examining when we are looking at possible models and different options in the way forward.

A final consideration for children and young people living in residential aged care is the risk of experiencing abuse and neglect. Research on the abuse and neglect of children and young people with disability has identified a number of environmental factors that increase the risk of abuse occurring in an institutional setting. These include where children and young people have little or no choice or control over their lives, have multiple care providers, rely on others for intimate personal care, live or spend significant time in settings where they are expected to be always compliant and well behaved—which perhaps involves drug management issues—and where they are reliant on alternative forms of communication, are viewed negatively by others and are less able to name abuse. So we can see that those who are susceptible to living in residential aged care could be highly vulnerable to abuse. This is a further reason why there is a critical and urgent need to provide and develop other care and housing options. I think that is about it from me.

CHAIR: Thank you.

Mrs De Crescenzo : Good morning. Tony and I are the parents of Eduardo, a 25-year-old who has an ABI due to an underlying genetic disorder. It all began in November 2013. Our son had a routine nose operation, and this led to a diagnosis of a urea cycle disorder called OTC, something that was unknown to exist in our family. Genetic testing diagnosed that I am a carrier, and our 30-year-old daughter is also symptomatic, like her brother. The operation was the main cause of the OTC being triggered off.

In the hours after the operation, Eduardo's attitude changed from a placid, energetic person to a confused, irrational and angry person. Despite many tests, doctors could not find what had caused his change of character. By luck, a specific blood test was conducted to test ammonia. The ammonia by this stage had reached 500. Normal levels are between 12 and 72. Due to the hyperammonemic state, Eduardo developed brain swelling which required five craniotomies and one cranioplasty operation. In order to reduce the ammonia in his blood and in addition to medication that he was given, he was attached to two haemodialysis blood machines and had many blood transfusions later. Eduardo spent 5½ weeks in ICU at St Vincent's Hospital in Melbourne. Despite doctors saving his life, he has been left with severe brain damage.

After six months at St Vincent's Hospital, Eduardo was transferred to a rehabilitation facility, Gardenview house, at Royal Park Campus. We were not given any other choice. Gardenview is a residential, slow stream, rehabilitation care facility currently under aged-care funding, meaning that the residents are expected to pay for their admission. The facility offers both rehabilitation and nursing care of patients who have ABI. At the moment, Gardenview has a mixture of patients, young and old. There are 10 residents between the ages of 25 and 70.

But we have been informed that Gardenview is under review. The current model and funding are in question because of the new ABI facility that opened in Caulfield. We are concerned because there is a shortage of suitable ABI facilities in Victoria, both rehabilitative facilities and post-rehab facilities. At Gardenview we need continual therapy daily for all the patients. Gardenview can be a place made for the young with different and specific needs that can be helped.

Our son's needs are very critical. He needs to remain at Gardenview house because of his needs, including full nursing care, daily physio and rehabilitation, though there are days when the physio is not provided and there are no speech therapists. There is a day off for people. There are days nothing happens. We provide private massage and are looking now for acupuncturists as well.

Mr De Crescenzo : It has changed a lot since—

Mrs Veitch : It doesn't sound like it!

Mr De Crescenzo : It is not 100 per cent, but it is a little bit better.

Mrs De Crescenzo : All right, Tony; just a minute.

Mr De Crescenzo : I have been pushing a lot, and also, as the gentleman said, I have an OH&S ticket, and that has done a lot.

Mrs De Crescenzo : Tony, just let me finish, sorry.

Mr De Crescenzo : Yes.

Mrs De Crescenzo : The residents have their own room and shared shower and toilet facilities. All the rooms are decorated to their tastes, and residents have a TV in their rooms. Those residents who feel they can eat together do so in the dining room, or they can stay in their rooms when they are not feeling well. There is a small garden outside the day room; otherwise, Royal Park Campus has beautiful trees and lawns. There is a church on the grounds and a beautiful rose garden and fountain outside Gardenview.

We take our son out in his chair every day for a walk around the gardens. We listen to music or watch TV. We talk to other residents in the day room. All the young residents at Gardenview seem to be happy. One of the residents at Gardenview travels on the train and goes to uni in the city. She comes from and goes to the city on her own and is confident with public transport, which is located close by.

For Eduardo, not only does he have specific ABI issues; he also requires close monitoring by his metabolic team, who are on 24-hour call. In the event of his ammonia levels rising, he needs to be taken to Royal Melbourne Hospital urgently in order to reduce the ammonia.

Gardenview, or a facility, has to be geared for the young only. Money has been spent at Gardenview over the last few months. For example, the garden has been completed and a new day room built, and there is new equipment and chairs.

My observations of life in the last 20 years have shown that it is the norm for the young to become disabled victims of injuries caused by car accidents—as young people are more of the drivers on the roads and are part of the accidents that happen—drug overdoses, bashings and sport injuries and, like my son, where OTC was hiding its ugly head for 24 years. We need to provide a place where the young can communicate with staff, talk, play, laugh and cry with others of their own age. The carers need to be young in body and mind to understand, listen, help and care for the young. The young do not deserve to be left with people who are old and die around them.

Tony and I are getting older, and we want to see our son have all the comforts and care he deserves. We want to see him improving day by day. We want to see him happy. We want him to be surrounded by people who understand his needs, medical professionals who know about his OTC and how critically important it is to help him. We also want to know that, while Eduardo is in the care of Gardenview, they respect him and he has dignity; he is safe while we are asleep at home; and when we visit we are welcome.

Just recently, I watched a film of the story of Fulvio Frisone, an Italian man who was born in the sixties. Because of complication during his birth, he was left with a disability. Because his mother believed and wanted more than abandoning her son during a time when there were no services available, she had to fight for the law to be changed and the mainstream schools to accept him. Her belief in her son was seen to be correct, as he is now a renowned nuclear physicist. He has written many books and papers and is renowned in his profession.

We believe that people with disabilities can be part of the mainstream society, go to school and contribute to everyday life. We need to believe in them and not abandon them, give them a chance and provide a place where they are taught new ways to eat, drink, talk and communicate. People with ABIs are people who have contributed to society, just like our son did. He is a taxpayer, a homeowner and an employer. He was school and debating captain. He has a degree in business marketing. His day was busy and productive from the moment he got up in the morning. He travelled overseas many times.

We refuse to give up on him and refuse to accept a system that regards people with ABI as a burden on society. We believe that Eduardo will try his hardest to overcome his problems. Because he was a person whose gift of speech was his biggest asset, he could sell ice to Eskimos. Whatever he did, he did with 100 per cent of himself. So we need to give him a chance. We know that this is a very long road ahead for him. As a family, we have our faith also, which helps us cope. Our philosophy during the last 16 months has been that we wait minute by minute, hour by hour, day by day for his recovery. Thank you.

CHAIR: Thank you very much. We know how hard it is for people to share their personal experiences, but we appreciate it so much because it is through personal experiences that we learn really directly what is happening. Mr Bajay, do you want to—

Mr Bajay : No, Dr Morkham, Stephanie and others have covered a lot of the things I want to say. They have covered everything.

CHAIR: We will now enter into some discussion, so, if you feel that you want to add something, please let us know.

Mr Bajay : Thank you.

Senator MOORE: You heard the questions we asked the previous witnesses. We are trying to get a picture of what it is like now and what has changed—and I think Dr Morkham and Mr Blackwood have that experience in what has happened—but the real focus is what needs to be done into the future. So I would very much like to hear from each of you, particularly the difference between the advocacy organisations that are there and people with their personal experience, about what you want to see change, to get that on record to see what we need to do into the future. I have no preference; who wants to start?

Dr Morkham : I would like to make a comment. Following on from the story we have just heard, I think the need for rehabilitation services is absolutely acute.

Mrs De Crescenzo : That is right.

Dr Morkham : We heard from Alfred Health this morning, who offer one form of rehabilitation service, a facility based service. It is a relatively new—

Senator MOORE: Only last year, I believe.

Dr Morkham : Yes, it just started. But the Slow To Recover Program, which Trevor has now been able to access, is a non-facility based program, the only one of its kind in this country. I think there was comment made before. I think Senator Reynolds commented about innovative housing happening in pockets everywhere. So we have good, innovative rehabilitation options happening in different parts. In the state of WA, we have Brightwater Care Group, who offer a superb service at Oats Street.

Senator MOORE: Yes, I have heard of them.

Dr Morkham : We do not have a national rehabilitation strategy, which continues to be one of the biggest lacks that I can think of. We do not have any way of the health system—nobody wants to know about this. There continues to be a view that rehabilitation is an expensive luxury, when it is a fundamental health—

Mr De Crescenzo : So what? They already try to spend $500 million to $700 million to make a hole in the ground. Why can't they look after these poor people?

Dr Morkham : Yes, I think that is exactly right.

Mr De Crescenzo : It is a waste of money. Why are we paying so much money? Last year, our Premier had to rent a house—

Mrs De Crescenzo : No, that was the Prime Minister.

Mr De Crescenzo : the Prime Minister, sorry. He had to pay $3,000 per week. He was not living there. They were fixing the house up. That is a waste of money. We have a lot of waste of money by some people. Why does he want to lose us money? Why don't we look after these poor people? That is all the people here today. They need the help.

Dr Morkham : I think, Mr De Crescenzo, you are right. I think our priorities are wrong. I think that is what you are saying, isn't it—

Mr De Crescenzo : That is right.

Dr Morkham : that our priorities are completely wrong in this regard. We spend a lot of money saving people's lives, like Eduardo's, but we do not follow through and provide the rehabilitation and the supports they need to regain as much independence as they can get, and then we throw them out.

Mr De Crescenzo : At the moment, that gentleman there does not make any money for the government. He does not produce anything, which is wrong. When he was healthy, he was working and making money for the government. At the moment, he is being neglected. The lady next door was—

Mrs De Crescenzo : No, Tony—

Mr De Crescenzo : That is not fair. He paid his own bills.

Dr Morkham : You are quite right. It is about our priorities. We as a community, I think, need to have a discussion about what we want, and I think this is one of them: rehabilitation services. Where does it sit? Slow To Recover is a great example in Victoria of how it has been handed between departments. It started off in aged care because it began as an attempt to resolve the issue of young people in nursing homes. Then it moved reluctantly to disability services. Health does not want to know about it. It is underfunded, underresourced. It is a very, very good, cost-effective program that is not supported properly. But it could do so much more.

So, for me, one of the biggest issues that we have is around: how do we provide the health services that these young people need? Most of the young people in this cohort have complex health needs. You can get them in a hospital. You can get them in a nursing home to a degree. You cannot get them anywhere else. So it is delivery of rehabilitation services, but also the wraparound health outreach services that we are going to need to develop in community settings are vital. That is one very important part of it.

The other thing I want to mention is the National Injury Insurance Scheme, which has been a bit of a sleeper so far, I think. It is a companion scheme to the NDIS which will deliver rehabilitation services if we can get it up and running. It is needed to sustain the viability of the NDIS. We simply have to get that up. If we are looking to develop rehabilitation capacity in a national rehab strategy, the NIIS is one area that needs to start to bite. I will stop at that point.

Mrs De Crescenzo : Something that just came to mind for me is that with our stay at Gardenview, we have taken things day-by-day because Eduardo has different needs. But one of the things that was brought up when we were told that Gardenview is being closed down—we complained as to why there was no speech therapist. I do not know whether we may need to change that so that, for example, kids at uni take on speech therapy. We were told they could not get anyone to apply for this job that has been advertised since November. I do not understand why there are no children taking on speech therapy as a course. Maybe we need to develop more things like that.

Mrs Veitch : Trevor was in there from 31 October 2009. He has aphasia. He needed speech therapy straight away. They did not have a speech therapist then at Gardenview House. They would get one who would stay for a week; they would leave. Then they would not get anyone for about six months. Then they would get someone else who would stay and then say, 'I don't want to be part of this place,' and they would go.

Mr De Crescenzo : Maybe it is just the funding. Maybe they are not paid enough.

Mrs De Crescenzo : Maybe they are not paid enough.

Mr De Crescenzo : The fund upstairs—they asked a few questions. The money in the budget is not there. What sort of budget? We do not need any budget for these people. What we need is the health of these people—for them to be healthy. That is it.

Dr Morkham : If I could add to that again: rehabilitation is still seen as a luxury item, not a fundamental health response.

Mr De Crescenzo : That is wrong.

Dr Morkham : It is wrong, until we can get away from that. Oats Street in Western Australia has done a cost-benefit analysis and shown a four-to-one return on dollars spent if you invest in rehab at the right time. It is very early intervention. But the savings—if we are going to talk about money, you can save money over the long term on the care costs of the person by providing that very vital rehabilitation in the right way early on.

Mr De Crescenzo : Of course.

Senator MOORE: How does rehab stand in the NDIS?

Dr Morkham : It does not, unfortunately.

Senator MOORE: I was wanting to get that on record.

Dr Morkham : That is one of our biggest worries, that it is not seen. We had a conversation with a family member in New South Wales last week whose son has a very profound brain injury with little that can be done to assist other than therapeutic massage to cope with contractions. He has decided not to join the NDIS—he is in the Hunter trial site—precisely because he met with them and the NDIS said they would not fund that. This young man has been funded for that under the Younger People in Residential Aged Care initiative. They are getting more from that program, because of its greater flexibility and its capacity to go to what the person needs, than the NDIS. So they have made the decision not to enter the scheme because they are going to be worse off.

CHAIR: We will obviously be following that up with the NDIS, but one of the issues there is the National Injury Insurance Scheme. Presumably they see some of that picking up the rehab. But if that is the thinking, that is ridiculous.

Dr Morkham : It is, because that will only deal with catastrophic injuries. If you have someone with a hypoxic injury, or someone like Eduardo, he will not be classified in that way.

CHAIR: Exactly. We will obviously chase that up, but I suspect that is some of the reasoning behind it. You are right. It does not deal with ABI resulting from other causes.

Senator MOORE: Dr Morkham, can you provide us with that case—without names, of course—so we can raise it specifically? There are a number of things that have come out that we have to take up, but that is a specific issue. I would imagine it is something to do with what they are funding that they do not think anybody else should fund.

Dr Morkham : You are quite right.

Senator MOORE: In legal terms.

Dr Morkham : It is around that divide with the health system. Unfortunately the scheme takes a very blunt view, which is that if it is a health issue then Health needs to do it—not understanding that some of these health services do not actually exist. Health does not deliver them yet; they need to be developed. It would be really terrific if the scheme took a more partnered, collaborative approach and went and sat down with Health and said, 'Look, it's in both our interests to develop this. Can we work together on it?' It sounds obvious.

Senator MOORE: I know that it is a problem with palliative care. It is in exactly the same situation.

CHAIR: I know Senator Reynolds wants to jump in. The NDIS, or NDIA, is supposed to be doing that. They are supposed to be because we made sure it got in there, in terms of that advocacy role.

Senator REYNOLDS: Just following on from that advocacy role: Dr Morkham, we have had a lot of advice from organisations who are specialists—whether in MS, Huntington's disease or acquired brain injuries—who develop a body of knowledge and skill and expertise not only in advocacy but in what is required for that particular disease, whether it is Alzheimer's with early onset or whatever. A lot of the feedback we have had is obviously concerned about the block funding and how they are going to continue to provide those specialist services, and that the NDIA staff are much more generalist. I think what might be an example is that they are not necessarily reaching out yet to people who understand a particular illness or condition or injury, and so they just have a little block of yeses or noes. It appears to me they have been trained up to be generalists and not specialists, and they are not people who understand the requirements not only of the individual but the support services that have to wrap round that individual and support them as well. I am wondering if anybody would like to comment on that.

Ms Gotlib : I am just going to say as a comment on that: you mentioned that the NDIA is not reaching out to disability-specific organisations for advocacy. They are actually not reaching out to CDA around any advocacy for children and young people. We have been knocking on their door and not getting any answer.

CHAIR: We are going to have a long list of questions.

Mrs De Crescenzo : The injury that Eduardo sustained is one of those injuries that nobody really knows anything about. From the little bit I have found out, not many people have lived to the point he is at because hyperammonemia causes a great degree of injury to the brain and to the body. But with one person I have contacted in America, the man lived for a few years but has passed away with infections and things like that. When Eduardo was assessed they said, 'We'll treat him like it's a car accident brain injury.' I do not know; I do not think that is what his injury is because it is all over—the hyperammonemia did damage all over. He needs somebody to say, 'We think his physio should be different to a car injury person's or to a person's who has been bashed or something like that.' There is a need for change.

Mr Bajay : The main issue with Eduardo's case, we have found, is that while he was in hospital he was receiving specialist care. People were designated to him and were looking after him around the clock. Basically, after that, it was a big unknown—a massive unknown—what was going to happen with the rest of his care. Gardenview came up and that was a rehabilitation centre. We found it less of a rehabilitation centre and more of a care centre. It is a glorified nursing home. Although it is named as rehab and there are rehab facilities available, quite often they are not provided. They are there on paper but they are not there physically.

Sometimes there are sessions where Adele, Eduardo's sister, has said to me, 'We are looking at getting our own care for him.' That should not be the case. If he is in a rehab facility he should be receiving all the care he needs. All he should be getting from the family is just social nourishment, which we understand is not available from staff. There is only so much the staff can do to socially interact with him; they have a job to do and other people to look after. But if he is not receiving the care he needs—the rehabilitation care he needs; the speech pathologists, the physiotherapists and so on—then what is that facility doing? Is it fulfilling its job? Because, of course, it is getting funded, so it needs to be providing the facility it is there for. I feel, and I am sure the family agrees with me, that it is more of a care facility than a structured rehab facility.

Mrs Veitch : My brother and a lot of the other people that were there were receiving on their timetable five hours of lunch group therapy. That was when the diversional therapist would sit at the table with those residents who were able to at least get out to the dining room, and she read the questions—three points, two points, one point. Most of the people at the table could not speak, and the nurses would answer the question. That was worth five hours of therapy a week.

Senator REYNOLDS: Mrs Veitch and Mr and Mrs De Crescenzo, for Trevor and Eduardo, do the costs for the Gardenview all come out of the disability support pension?

Mrs De Crescenzo : Eduardo is a private patient in a public hospital. He, luckily enough, listened to me and has health insurance. As a 24-year-old, he has top of the range health insurance with Australian Unity.

Senator REYNOLDS: Do you know roughly how much—

Mrs De Crescenzo : When Eduardo got sick—and I am still in denial, because I have had a lot to cope with, firstly, to know that my son has this unknown injury and then to be told, 'You are the carrier and you are to blame.' I have a daughter that is sick as well. I have left everything to Adele. She is the one to speak to if you need the specifics. At this point in time all I have done is given her the okay to sign off, and Australian Unity have dealt with it. I have not had any bills at all.

Mrs Veitch : I have paid all of Trevor's bills. Trevor had no money and no health insurance. He was on a disability pension but he also had income protection for the first part of the time that he was at Gardenview—not all of it but just a little while. The bills came to me. I did not question them; I just paid them. We would get a bill for the accommodation. It used to be $2,000-and-something a month, and then the medication, the pharmacy bit, would be added on the end.

This is just an aside, but it is important about Gardenview. I wrote to them when his income protection ran out, just as a courtesy. I did not know whether it would change the bill. I did not know what would happen. All hell broke loose. I had multiple phone calls of apologies from Gardenview House—the cashier or whoever he was. They had overcharged Trevor by $16,000—just a slip. They would never have picked it up if I had not written to them and said that his income protection had changed. They gave me a cheque for that amount of money. Meanwhile, I was filling out Trevor's ABA with VCAT, and a red flag went up about me. Why was I claiming all this money for my brother when that is not what they charge at Gardenview House? There were big problems about that. I had to present them with a cheque for $16,000 from Gardenview House because of a mistake they made. I did not know it was a mistake; I just paid the bills. I did not know to question an authority like that. Now I question everything.

Senator REYNOLDS: Who is paying for him now that the insurance has finished?

Mrs Veitch : His disability pension paid for his time at Gardenview House. At first they supplied the pharmacy side and then that got changed to another outside group, who then came in and checked all the medications and everything and how people were paying. Once again there was an $800 Medicare rebate, because they had made another mistake.

Senator BILYK: I apologise for coming in late—typical planes. You may well have covered this, but I am interested in any suggestions people might have for how we can deal with the fragmented health and complex needs of young people. Things appear to be siloed, and those silos do not seem to meet on a horizontal scale. I am wondering whether people (a) have any comments and (b) have any suggestions to make with regard to that.

Mr Blackwood : One of the attachments to our submission was a piece of research we had done with Sydney University looking at cross-sector coordination. It looked at the evidence where pilots and different programs had looked at getting support from multiple programs for people who had needs outside disability services. There was good evidence that cross-sector coordination works. It can be done, and it is actually very cost effective. So that evidence is actually part of our submission.

The key to making it work is to have cross-sector coordination at the policy level—the programs need to talk to each other. And also the service sector needs to have those networks, as well. Case managers in the disability sector need to be able to talk to health and vice versa. As Bronwyn said, the system wranglers are really important, where someone is actually given a mandate to work across sectors. The trouble we have had with case management over the years—which is probably the latest profession to have come into this care sector—is that generally it only works in the program that funds it. If you are a home community care case manager, that is all you do. If you are a disability case manager, you are only mandated to work with that bit of funding you have in that one program. So if the person you are working with has needs in health or education, you actually have no mandate to go and sort that. So the evidence we looked at—

CHAIR: But even if they do have, you assumed that case management means you have that—

Mr Blackwood : Absolutely. You are there in the chair and you are being paid to case manage, so why can't you do it? Even that is siloed. The evidence that we came across was that if you can actually unlock that system wrangler and actually mandate, even if it is co-funded by various programs, you can actually get those connections. But they have to happen at the policy level and the service level, and also around the individual. It is a multiple-level approach but it is actually not that difficult.

Going back to your question, Senator Moore, about how the NDIS is approaching this, our particular area is around people with complex needs—with health and disability support needs. The NDIS is a single-program response. It is just a disability services program. The reform that we looking for is not just changing the point of purchase for disability services, which is kind of where the NDIS is headed. The choice and control argument—you give the money to the individual and all things follow—is actually quite a compelling argument. But it does not bring reform. Just changing where the money sits and who makes the decisions is not going to develop a rehab sector. It is not going to have better connections between health and disability services. It is not going to create service pathways. One of the dangers with the way the NDIS is constructed and even with its KPIs—we recently got an email from the chairman talking bout that saying that they were on budget and were on target for the number of plans—is that it is changing the world one person at a time. I think we are all smart enough to know that, while you need to support individuals, it is going to take a very long time and the reform is going to be random if you are just relying on individuals to drive it. The scheme and/or the Department of Social Services and Disability Reform Council ministers need to think about how the reform gets driven from the policy level as well as individual level.

Senator MOORE: I just want to test my understanding against people who are working in the system. Whilst certainly the NDIS was looking at disability and was owned by that solo, my understanding was that part of its role was looking at what services were available in the regions in which it operates. The way it was to be put into regions was that it would have the local knowledge, it would be fed in and then one of its first steps would be to get an audit of every service that was available in the region. It was very clear by the legislation that if it was another place's responsibility then the person should go—so that was where the health system, the transport system and all those things get caught up. But the understanding was that those program managers would know what was available for the person and they would be able to say, 'We can fund this, but if you need that, then that is where you go.' It was supposed to be that kind of wrap-around contact. Is that right?

Mr Blackwood : Yes, that is the theory. The local area coordinator role was supposed to look at what the NDIS could fund and then refer people on to other programs. But if you can imagine someone who is employed as a bureaucrat in one system trying to tell another system what it should be doing, or just making a referral, it is a bit of a hit-and-hope type of approach. It is doing an assessment, finding out that a particular person needs a health service and then saying, 'Good, we will refer them to the local health service and hope that it works.' You have to actually do better than that. If you take responsibility for planning someone's needs, you actually need a better mechanism to get other sectors to respond rather than just making a referral. There is no reform in that—we have been doing that for a generation, and it is part of that siloed approach that we are left with. There needs to be some kind of attention to whether the scheme needs to develop a division between policy and cross-sector negotiation, whether that sits with the department. But I think that is a gap at the moment. It is doing a good job implementing its basic structure, but where the reform lies is how it ensures that people can get their needs met wherever they need it.

Dr Morkham : Can I just add a comment to that? I would like to name this for what it is, which is not disability reform—it is human services system reform that we are really looking at. A lot of this has to happen outside disability services. At the moment we have an archaic system, really very much 19th century, in my view

Mr De Crescenzo : 18th century.

Dr Morkham : Tony might think even worse; but really, what we are after is a whole of system reform here that the NDIS can participate in and drive and be a part of; but it cannot deliver all of it, obviously, in the same way that it cannot deliver all the services that people want.

So when the NDIS looks to Health and says, 'Here is someone with a health need—Health, you deal with it,' Health says, 'Hang on a minute—we have a very limited budget, we are overwhelmed already, we are under-resourced; we don't have anything to offer you; back to you, baby.' Back over it goes to the NDIS, who then says, 'But Health, you are legislatively responsible for this: you step up.' We have this butting of heads again. We continue to go round in that circle, which is where you need the system wranglers operating at that meso level, the service level, where they can go in and meet with their colleagues, work out what each of them can contribute and wrap it up. I think the thing that is missing is the capacity to wrap it into an integrated service response—not just the bits and pieces stuck together, but really properly integrated so that it works with everybody's benefit.

Ms Gotlib : I agree totally, and I am really interested in how we locate who takes responsibility for that integration. If you just listen to people's stories today you think, 'Why hasn't anyone followed them up?' The social worker in me is jumping out, I can tell you. It does not jump out much.

CHAIR: So who do you think?

Ms Gotlib : I do not know. There seems to be some cross-sector coordination, and I think we need to mandate some responsibility. The other point I keep thinking is that in 1988 my brother had a compensable brain injury. He was 16 at the time. Nothing has changed.

Dr Morkham : Who should be responsible? We do not have a bank of wranglers yet. We have isolated instances of very skilled people—social workers in hospitals, for example. They know the hospital they work in back-to-front, but they know nothing about disability.

CHAIR: Who says, 'We are going to have wranglers'?

Dr Morkham : You need it at all three levels. COAG—the Disability Reform Council ministers need to sit down and get their heads around this. But they need to go and talk to their health minister counterparts. They need to talk to their education minister counterparts.

CHAIR: This is where it slips between the gaps. If you remember when the NDIS was being talked about, and Graeme Innes, when he was commissioner, was saying that the agency needs to have responsibility for doing this. There was some built in during amendments, but it seems to me that that is not strong enough there. It is all right saying 'COAG', but COAG is non-existent: it is meetings, and they agree to deliver whatever—

Dr Morkham : I think from that paper we did on cross-sector coordination, as Alan mentioned, there are the three levels—the macro, the meso and the micro. At a macro level, which is at a policy level, it really is up to the ministers. But again, it has to be the ministers from those other programs who sit down and say, 'We need to drive this from our level here.' If we do not get that sort of policy imperative, support and funding delivered as well, we are not going to go anywhere. Our colleague from the complex needs alliance was making the same point that there is no funding to deliver any of this—great intentions, but nothing is happening.

Mr Blackwood : I was just going to say—and it goes back to your question, Senator Reynolds, about what you do with all those specialist organisations that are looking at what we do and how we manage the expertise—that the way the NDIS has been designed is as a government department. Everything happens inside the machine. You have your funding decisions, your planning and your coordination, which means that there is a huge amount of capacity, knowledge and leveraged networks in the community that just are not being accessed. Going back to what Professor Way from the Alfred said, there is a bit of a risk-sharing approach. We all have a vested interest in the NDIS succeeding, but there is no way for the community to share the risk and the rewards of the scheme; it is all locked up inside government.

Senator MOORE: Look at all the advisory committees. Are they not working in terms of getting their input and getting engagement with their groups?

Mr Blackwood : I just think that there is not a way yet—and maybe this will come as the scheme develops—to harness that expertise, that knowledge and those networks to actually deliver some benefit for individuals. It all has to go through this pipeline of planning and then funding, unless you have those specialist organisations out there—they have some phenomenal networks. We heard about Huntington's today. There is a particular network around the members of that community or others where those organisations know what the pathway is. They have networks into research, service provision, health, education or whatever it might be. The NDIS cannot access those networks at the moment. Just giving the individual a bit of cash and asking a few questions does not unlock and utilise those networks. So there is potentially a lot of free help out there. There are a lot of networks that are just lying dormant.

Mr De Crescenzo : So you cannot use them.

Senator MOORE: There is your paper about the special needs for children, and Sally Robinson's paper is fantastic. Where do they go?

Mr Blackwood : Into the reading list, I guess. I do not know. We have done briefings on our paper.

Ms Gotlib : I am happy for you to action all those in the Enabling and protecting report.

Dr Morkham : Again, I think ministers have to get their heads together and stop being siloed themselves, if I can put it like that. We need some leadership and vision here, and we need some champions to get out there and run this, because there are benefits across the board for everybody involved, but then we also need to identify, as Alan is saying, where the organisations with that particular expertise are. At the moment, it is very difficult for them to get access into the NDIS with what they have. Because the scheme is driven around individuals, it is not tending to grasp that. It was interesting to hear the health folk talking about it. They are really keen. They want to go and work with the NDIS. We hear this all the time from health colleagues. But there is no mechanism for them to grasp hold of it. There is no entry point for them. The scheme is now aware of people with complex health needs. It knows it has to go and have a look at them. It does not quite know how to do that, it does not know what that involves, and it does not quite know where, at the health point, it goes into health to talk to them either. This is all just part of the evolution of the scheme, hopefully, but we have to support it to become more sophisticated in how it engages with mainstream programs, whether it is health, education, employment or whatever. It cannot just remain a disability-driven program. It will be for its service delivery, but it has to look beyond that.

Senator REYNOLDS: It seems that what all of you have been describing is that there is a difference between responsibility and accountability. You have ministers and departments who are responsible for delivery of silos—health, housing, aged care and all the different silos—but nobody is accountable for the outcome for the individual right around the loop. I think that, even though we have responsibilities across the sector, until somebody is held accountable for the outcome for that individual—and that means doing all of that cross-sector collaboration—really we are not going to get some change.

Mrs Veitch : From the other end of the scale, when you have someone in hospital, you need someone to tell you what to do, and you have no-one. You are left on your own to figure out what is going on. If you do not have the resources to go and use the internet or go and ask, ring up or annoy people, you get nothing. I remember going to a family meeting, and there were a few specialists there and a lady who I had never seen before. She actually asked everyone at the meeting who the case manager was for my brother, and the specialists turned around and looked at her and said, 'You are.' She was the social worker at the hospital, and she did not even know that she was the case manager for my brother.

Senator REYNOLDS: That is very interesting and we have had a lot of very similar feedback about that hospital/health system interface. We have had a lot of people say exactly the same thing. Obviously it was the same thing for both of you: there is no information. If you have no background in disability, health and welfare, you may not know to consider whether someone has private health insurance or income protection. We have had consistent feedback that the social workers are not fully informed and that they are coming from the hospital perspective, which is, 'We've got to work out how we can get you out,' and the only option they present is aged care. Is that a fair summary?

Mrs Veitch : That particular social worker had no idea what was going on in the hospital at all. Then Trevor moved into Gardenview House and, lo and behold, she got moved there too. So she had no idea what to do there either. They did not even have a social worker at Gardenview House until she arrived, and she was only there for a little while and she left. Then they had one part time, one day a week.

Senator REYNOLDS: Is that lack of information something that all of you would say is a severe deficiency? You need to know what your options are, what to check—checklists of the sorts of things you need to ask, look for, go to—

Mrs Veitch : And someone to help you do it, because you are really very upset at the time. I found Bronwyn on the internet. It was just luck and she has had my back all the time since then. But, if I did not have her, I do not know what I would have done.

Dr Morkham : It is not just about information and the lack thereof. There is no clearly articulated pathway for anybody to go down. So health does not know about a pathway; it stops at the hospital door. Disability does or does not pick it up, and it has its particular pathway. But there is no integrated pathway for families, for clinicians, for anybody to look to, to do that with.

I have made a comment about the ministers needing to work together, but we do have isolated pockets where services are working collaboratively with one another. One here in Victoria in the health area is Western Health, which is one of the biggest health services. Out there they have an enduring problem. We are finding that nursing homes are starting to say they will not take younger people because they know they are at risk of non-compliance under the act if they do without additional resourcing. So the problem we are now getting is people not being able to be discharged from hospital and living for years in a hospital.

So when Western Health have someone with a disability and complex needs, they go to either disability or aged care, whoever has capacity. Usually it is aged care. They bring the provider in earlier in the discharge process and they try and make the provider more aware of the needs of the person, provide some training for staff. But then they follow the person out into that service and they stay out there for a month, supporting the staff, supporting the service to do what it needs to do for this person. They are not funded to do this, so there is only money available for one month, and then they withdraw. But, because it is such a short time, the moment they leave or the minute there is an emergency, the ambulance is called and we are back to the hospital. Sometimes we find the providers will say it is just too hard and close the door. So there are pockets where this is being trialled, where people are trying very hard, with good results. But, again, there is no systemic support for that either.

Ms Gotlib : The other model—and I can only speak of how it was when I was there, and I know it has changed since then—is the Family Choice Program, which was for children with complex medical care needs. But they had a home care nurse who trained family and a range of attendant carers to provide the complex care. It was so kids did not have to live in hospital. Then they had ongoing case management and looked at what the family's needs were, what the children's needs were, or vice versa, and looked at how they could wrap the services around the child, their developing needs and their life. It was an expensive, Rolls Royce kind of program at the time when I was there, but it worked and worked well.

CHAIR: Who funded that?

Ms Gotlib : I think it was DHS.

Mr Blackwood : And Health.

Ms Gotlib : Yes, DHS and Health. It was much cheaper than the children living in hospital, obviously, but it was also a better outcome.

Mrs De Crescenzo : One of the things that the other lady might feel, that I feel as a mother, is that when you are hit with somebody—in my case, a perfect son—all of a sudden having a disability, going from black to white, it takes you a long time to put your head together. I am lucky that my children have friends who have helped them, who support them, and I am lucky that I have had education. But there are a lot of people who do not have—

Mr De Crescenzo : That help.

Mrs De Crescenzo : that help. There is a family near us who are from Iraq. Their English is very poor. We had the family meeting the other week and I said to him: 'Did you understand?' and he sort of looked at me. There was no-one there to translate. I did my best in my sign language and with my English to translate. Somebody had taken minutes, and they got a translator for him to talk to. When you are faced with something out of the blue it takes a long time. The other point I wanted to say is that, when the people are going to work in any job, they must have the passion to do the job. They must have a passion; whether it be a lawyer, or a street sweeper, or whatever. They must have a passion. Whoever comes into the disability field must have a passion. There was a girl there one time with Eduardo doing so-called massage. I turned around and said that she was like a wet sponge, a wet mop. She does nothing—she does not talk to him, she does not say anything—she just goes back and forth. A few months or weeks later she had gone. Whether it was my saying something or whether they actually took notice. Also the other thing is that Tony and I and our family feed Eduardo every day. Every day we take him out. He is not going to stay in that room.

Mr De Crescenzo : It is not just for my son; it is for other people too.

Mrs De Crescenzo : My heart has said to him, 'You are not going to be abandoned. You are not going to be left alone. Whether I am here for an hour or 10 hours, you are not going to be left alone.' There are people that are left alone for ever, whether it be because of distance or that their families cannot come. I am totally exhausted. Physically and mentally I am totally exhausted, but I get up in the morning. As much as it took me to get to here this morning, I was here this morning.

I think all this talking is like everybody is meeting. My daughter is in the council, and all they do is talk, talk, talk. There is nothing done at the end of it. Are we going to have this talk, talk, talk? It is a waste of time having recordings, papers printed, people coming from interstate and nothing coming of it.

Mr De Crescenzo : It has to be done today.

Mrs De Crescenzo : Somebody has to take charge and say, 'I'll do it'. Someone is going to have to say, 'I'm the one that is responsible'. I always thought that a good boss was someone like Richard Branson and people like that. They sit at the top, they do not physically go out into their offices and see things. They have staff underneath them who they can trust, and then they have staff underneath them who they can trust, and then staff underneath them. Why are they millionaires? Why are they succeeding? Because they have a vision to see something. Is there going to be a vision in all of this? I do not know. Are you people just sitting here because of your degrees and everything else, or are you people with passion? Are you people who have a foresight to see things?

My son was an entrepreneur. He wanted to do things in his life. He said to me, 'Mum, I'm going to build a house'. He has built a house. He was going to build another one. We had foresight. He could see. 'I'm going to go back to school, Mum, and become a financial planner'. 'I'm going to do this; I'm going to do that'. He had foresight. That is why I said, whatever he did he did 100 per cent and his friends know that.

I hope that you people will do your 100 per cent to get people that are hurting, whether it be me or whether it be another lady or a brother, a mother, a father, who have people with disability. They need help. In my son's case maybe we should look at a different type of rehab. For another person it might be another type of rehab. Let's get it started and let's do it.

CHAIR: We well and truly got the message.

Mr De Crescenzo : I hope so.

CHAIR: We have.

Mr De Crescenzo : I said 'I hope so' because, as I said, everything goes into a forgotten area. Let's go to something else. All the soldiers from Vietnam have not been recognised yet. It is 2015. A lot of people died for nothing. I am talking about the Vietnam War. But they are still discussing it. We had better do something today, not in five years time. Let us help these poor people. Put in integrated services. That is all.

Senator MOORE: I have one last question to get it on record, Dr Morkham, in terms of your opening comment, which I knew you threw the bomb in for us to get. It was the fact that you take housing out of disability and stop talking about it in that way, and try to move it into another sector. In terms of that process it comes down to what you said earlier, which was that you cannot take segments of people's lives. Is there any willingness? I know you have been lobbying in this area for a long time. Is there any willingness for this to happen? Does Disability want to get rid of it, and have you found someone who wants it?

Dr Morkham : First of all: does Disability want to get rid of it. The providers, I think, are still under the misapprehension that it is their job to develop housing, as they have in the past. Again, we are in a state of change, of flux, of reform. The providers still seem to think that it is going to be their job into the future to build housing and provide the service into that house.

Senator MOORE: They are the people like the Melbas and people that work in that sphere. That is the provider.

Dr Morkham : Yes. It is a horrible generalisation, but one, nonetheless, that I am prepared to make. There have been a number of housing conferences and forums that have been held over the last couple of years where that has been reiterated, so it is not without some evidence. There are people who are keen to do this; very keen. There are other housing associations out there, the non-profit housing associations, who would give their eye teeth to have a go at this, and would like to work collaboratively with Disability Services, with the NDIS, to look at transition options even, but there is no money. Housing seems to have fallen off the agenda as part of anybody's funding. There is literally no money in the bucket at all for housing in any social sense.

We are partnering with a developer at the moment to build an accommodation tower in the centre of the CBD which will have about 240 apartments privately purchased. There will be around 20 apartments for people with a disability. We have some government funding for that. This is an example of an opportunity where people will be in the middle of the CBD, usually too rare for people with a disability, and able to access all of the opportunities that that offers culturally, sporting, work, whatever you like. We have a developer, unfortunately too rare, who actually is making a profit in building this tower. Often we talk to other developers to see what they would like to do. Their answer has been, 'Well, you need bigger circulation space for a person with a disability, perhaps. The lifts have to be bigger. The lobbies have to be larger. That means we cannot put so many apartments on the floor, therefore we do not make a profit for our investors.' This developer has shown that that is absolutely not true. He is there to make a profit, but he is also there to build accessible housing, and 80 per cent of this tower will be built to platinum accessibility standard. All of the common areas are going to be accessible, the pool will be accessible, everything will be there. He is building for people of all abilities, not just disability.

This is one of the other things that I would like to comment on, which is that we do not want to build disability housing. We want to develop communities of people of all abilities. We need to have the community engaged and involved from the very outset. They are never involved. At the moment we are still plonking people with a disability into a segregated housing setting, and then we retrofit them into the community, and wonder why they are never part of that community. We need to bring the community in from the very outset. There are people out there who want to do it, but it is just that they are not being given a chance. We need to get the money flowing again, like everything. We also need to go and talk to the housing associations, we need to talk to the building associations, we need to talk to developers, and we need to talk engage them in doing this but with their local communities. Local government associations are a much forgotten area in this respect.

Senator MOORE: They do the approvals and own the land.

Dr Morkham : They do, and Melbourne City Council, for example, is about to make a decision where the land it owns will be offered at a discount to someone who is willing to build in accessible housing into whatever that development is. That is the sort of leadership we need at that level. People are keen to do it, but we are still not far enough along the road, yet, to see it broadly.

Mr De Crescenzo : In going back to Gardenview, there are two old buildings behind Gardenview. They are beautiful buildings. They are very old. They have to be refurbished. That is an example where they could be refurbished and get cleaned out. There is asbestos in there, but asbestos can be removed. I am a fitter by trade, so I work with asbestos; it can be removed. If you refurbish it, you will already have two good, big facilities for these young people. The space is there. There is a big car park and there is a garden not faraway. There is a park there. They can have a lot of facilities in that complex. So we do not need to go to a big builder like Grollo, a big millionaire, who will pinch more money. That is what it is. They are looking for profit. They are not looking to help. Stop looking for profit. If I was looking for profit, today I would be a millionaire. I could work seven days a week, 24 hours per day. I could have bought half of Melbourne with the job I have got, but I have never done that. I look after my family, so I still look for money. The government is wasting money looking after these people. We should start the ball rolling today, not tomorrow or in five or 10 years time. Get someone—it does not matter who. Put a new partner in, put a new person in. That lady—I cannot remember her name—can start it. You can do everything. But you have to be fair to the small people to help them.

Mr Blackwood : We have heard a lot about the clamour for this NDIS housing paper. You have got to wonder where the clamour is for the policy work being done by the housing sector, by the housing ministers. Again, it goes back to: where is the reform? We want an inclusive community outcome from the NDIS, but we are actually looking to a segregated industry to deliver it. While there is good practice, I do not know whether that is going to be a sustainable approach. I would prefer to see the NDIS look to the housing sector and almost say: 'Why don't you guys do a paper? Let's do a paper together.' I think people just want the money, they want a quick fix—'Give us some money and we will build some group homes. Our business model will be really good.' We need to think more broadly. We are just barking up the easiest tree. I think there is a complacency around the community with the NDIS—'They'll do it; they've got a bit of cash'—whereas if we want reform we have got to look to the right places, to where we want it long term.

Senator MOORE: The test and the reason for the clamour for the NDIS paper is that we want to know with whom they have been speaking. This is not an NDIS paper, it is a paper about disabilities and how that interacts with the NDIS. Until we find out with whom they have been speaking, and see what they are going to come forth with, we will not have the next round of questions. My final question, Dr Morkham, is around whether the work that your organisation has been doing around housing has gone into the NDIS as part of their consideration of housing.

Dr Morkham : Not yet, no. We have provided a paper. We have provided briefings to them at that level. The scheme has had such a rapid start—and it has had to deal with the people it has had to deal with—that it has not had a chance to lift its eyes up. But it is now. Yes, we have provided briefings on the work we have done and they are aware of it.

Senator MOORE: That was the question—to see whether you have been in there. As I think you and Mr Blackwood said earlier, it is about getting into that—and we have got to work that out. And it is about everyone getting in there as well—not just organisations, but also individuals with knowledge.

CHAIR: Thank you very much for your time, for your submissions and, in particular, for telling us about your personal experiences. It is through your personal experiences that we really learn what is going on.