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Community Affairs References Committee - 30/06/2015 - Violence, abuse and neglect against people with disability in institutional and residential settings

WILLIAMS, Ms Pauline, Housing Rights Co-ordinator, Action for More Independence and Dignity in Accommodation

[16:33]

CHAIR: I welcome Ms Williams from AMIDA. The witness who was going to be appearing with you is unfortunately unwell. Could I just check that you have had information on parliamentary privilege and the protection of witnesses and evidence provided to you?

Ms Williams : Yes, I have.

CHAIR: We have your submission; thank you. I invite you to make an opening statement, and then we will ask you some questions.

Ms Williams : Thank you very much for the opportunity to be here today. As the chairperson indicated, Terry Neal, a gentleman who lived in institutions, was going to appear with me today but he is extremely unwell. Terry has asked me if I could read some of what he was going to present, if that is okay.

CHAIR: You definitely can.

Ms Williams : He has also given permission for me to pass on his phone numbers, in case, at a later stage, he can make representation via phone.

Terry was going to say that he spent his first 25 years in institutions, primarily because his mother could not look after him. He did not actually have a disability when he went into institutions but he had one when he came out.

He is a survivor of abuse and torture by the state by his definition, and it has affected him in many ways. He suffers flashbacks to torture that he has suffered. He has what he classes as post-traumatic stress and he has been on a disability pension all of his life—since adulthood.

He has a terrible lung condition. It is called pulmonary sarcoidosis, which has primarily, he says, been caused by the stress and trauma that he underwent but also from years of homelessness after he left institutions. He has lived pretty rough on the streets and in rooming houses.

His main concerns are that in his early life his opportunities were so limited that that affected the rest of his life. In those institutions, he suffered terrible abuse in many forms. He was bashed. He was verbally abused. He was sexually abused. He was locked up. He was overmedicated. He was punished with shock treatment, not medically treated. He never felt safe.

He was taken out of school at the age of 13 and lost any chance of an education. He suffered from poor nutrition and poor health care. He says his childhood and his teenage years were stolen from him.

His question is: where was the duty of care that, as a child, the state was supposed to provide? Instead they locked him up and then continued to abuse and punish him for all of the time that he was in the state's care.

Terry's story is included in the AMIDA submission so you can read more detail there. He was in children's homes, babies' homes and then in Aradale, which is an institution in the western part of Victoria. At the age of 15, he was in J ward, which was for the criminally insane, and there he was abused by other residents of that ward.

He befriended an older gentleman who had been a university lecturer and who was also placed in Aradale. When that gentlemen got out, he arranged to look after Terry. Because his family at that stage gave permission for Terry to leave, he left at 15 and went to live with this man. Because the man was elderly, he did not live very long—six months later he died—and the state stepped in again and placed Terry in Larundel, which is a mental health facility no longer open in Victoria.

Terry's question is: how could they do that to me? 'I was looking after myself with this older gentlemen, but they chose to institutionalise me again'—this was against his will. From there, he was moved to Caloola, which was an institution in Sunbury, which again has since closed. It was for people with an intellectual disability and mental illness. Terry lived there until he was 25.

He got out of Caloola, because he escaped. There was a moment when he was able to get access to a key when a staff member went into a linen closet. He locked the staff member in the linen closet and left. He still has that key on his key ring.

From the age of 25 until now—and he is in his 70s—he has lived in the community. He has managed to have paper routes and different types of small jobs but has never really managed to be adequately housed until last year when he finally got a public housing unit.

Unfortunately, his health is so bad now that it is very difficult for him to be able to enjoy the fact that he is now safely housed. From his experience, he says that large groups of people should not be housed together. He says: 'Close all the institutions. Private boarding and rooming houses and supported residential services are just as bad.' And he has lived in all of those. 'They are mini-institutions run by dictators where residents have no rights and no choices. We need more public housing in areas where people want to live.' I will leave Terry's words there for now. As I said, you can read his full story in AMIDA's submission.

I have been an advocate for people with disabilities at AMIDA for the last 20 years. I have advocated for individuals and groups in residential services, mainly in Melbourne. I work at AMIDA and 'AMIDA' stands for 'Action for More Independence and Dignity in Accommodation', and we have had lots and lots of members of our organisation who have been institutionalised, have moved out into group homes and who, from there, have even lived independently and managed quite well to survive in the community despite having spent up to 30 years in institutions prior to that. We have used this experience that our members have shared with us and which has informed our advocacy over the years, but also the individual advocacy that we have provided for people who are living in residential services as they currently exist, and that includes some institutions in Victoria, although many are closing. So our submission includes some stories of the lived experience of some of our members and clients, and we urge you to read them and also to look at the DVD that I know Jane Rosengrave presented to you earlier today because it includes the stories of around 35 people; they, obviously, are not able to be here to give you the wealth of experience that they have had, but it is important information, I think, for the Senate to take on board.

AMIDA supports people with disability as valued members of our community. We recognise that people with a disability contribute to and develop our community, but we think it is not always clear that this is the view of the whole of the Australian community or its governments and, perhaps, even the services that are provided to people with disability, and we think that that recognition of the value of people with disability needs to be a starting point, because we question why, after years of advocacy and reviews and evidence and research about abuse that occurs in residential services, the abuse still continues.

We strongly support the United Nations Convention on the Rights of Persons with Disabilities, which Australia has ratified. In line with that convention, people with a disability should have the right to a choice of who they live with and where they live and, further, that people with a disability should have the right to good quality housing which is accessible, affordable and non-institutional, and the right to live in the community with access to the support they need to participate in the community and have a good life. These have all been signed up to but have not been delivered on, and it is our contention that if more work is done to actually deliver on those convention standards and benchmarks then this will reduce abuse, and that, after all, is what we would hope to achieve. If we continue on as we are, though, with a limited amount of money going into housing options and alternatives and with limited choice for people with a disability about who they live with and where they live, then regulations and monitoring and all of the things that have been going on for years just will not work, frankly.

Many people with disabilities have been waiting for many years to tell their stories. We think it is fantastic that the stolen generation and the forgotten Australians have been heard by governments and apologised to. But no government really has listened to the voice of people with disability. No government has apologised to people with a disability for the years of deprivation and abuse that they have been forced to endure in government run and funded institutions, not just in their childhoods but well into their adult lives. We question why that is; perhaps it is because many institutions still remain open and governments are not prepared to apologise without first addressing the fact that they are still funding and running institutions. But across Australia they do still remain open in many shapes and forms. There are large institutions; there are small; there are government; there are non-government. There are private businesses making a profit. In Victoria there are the supported residential services, with an average residency of 34 people. The largest one, in Brunswick, has 70. I have visited it many times. There were three people to a room. It is appalling, and yet it is regulated by our state government and allowed to continue to operate, as are all the supported residential services.

If you look at the Ombudsman Victoria report that came out yesterday, you will see that, in investigating all of the monitoring of the supported residential services that has gone on, it has been clear that, time after time, they have been non-compliant. In some cases, visiting has happened monthly for 34 months and they have still been non-compliant on issues like medication dispensing, food quality, emergency services and safety procedures. If time and time again, over many years, noncompliance is shown by a sector, why is it still allowed to function? Why is it still licensed, registered and supported by governments?

We are concerned that, in the introduction of the NDIS, many more private residences will set up, because their clients will be able to access packages of support through the NDIS which will subsidise the running of these for-profit businesses. We already know that the sector is a failure, and the Ombudsman's report just further demonstrates it. This is not the first report, by the way. Report after report has been written, but the recommendations never seem to get actioned. Even though new legislation was put in place in 2012 for the supported residential services, we find in 2015 that they still have not implemented the mechanism for issuing infringement notices. Not one single infringement notice has been given to any SRS. If you look at the residential services funded by the disability services state-wide government group homes, there is not one single instance of funding being taken away from services. Sorry; there is one: St John of God services had their funding taken away after massive failure and legal cases taken out because of the sexual abuse—terrible abuse—that was going on for the residents of that service. That is the only one where funding has ever been withdrawn. There are no SRSs that have ever lost their licence. As I said, none has even been given an infringement notice. Though the legislation is there, with penalties attached, it has never been acted upon.

I guess we have to question again why this is. Part of the problem is that the service system functions in a crisis mode, so many of the referrals to SRSs—in fact, the census of the SRSs in 2013 shows the bulk of the referrals—come from hospitals. So people who have nowhere else to go end up in SRSs. But disability client services case managers are the secondary source. They place people in SRSs because they have no vacancies in the group home system. It is under incredible stress, with demand in the thousands and no further building of any group homes of any sort. I think the last group homes to be built have been associated with the closure of some institutions. Apart from that, there have been no additional beds into the system, and those beds are actually already taken by people moving out of institutions.

Because of the nature of that crisis, the SRS system is quietly allowed to continue, with not very much being done to rectify reported abuse, time and time again. Community visitors' reports every year go to parliament, documenting hundreds of cases of abuse. If you check the Ombudsman's report, which I urge you to do, they have documented over 700 cases, where all that is done is that reports are kept. They are submitted to the authorised officers in the regions and documents are kept and little else happens. I guess what we are saying is that there has to be action. We have had lots of inquiries. In our submission, we referred to the 1996 government-sponsored inquiry into abuse in residential services. That is 20 years ago. If you checked the terms of reference to that inquiry, they are much the same. But 20 years later we are still discussing these issues. The action required is closure of institutions across Australia. It requires some leadership; it requires some money; it requires state governments, who often own them, to actually put money into redeveloping and closing them and providing alternatives for people in the community that respect their rights.

Our major concern coming into the NDIS environment is that the privately run supported residential services, which also exist in other states under different names, are going to be allowed to flourish. In many cases, the pension-level SRSs take the whole disability support pension from people, including when they get the occasional extra payments that happen at different times. They get a basic service for that—three meals a day, a roof over their head and some laundry. If people are coming into those facilities with a package of support, then it makes it easier for those operators to almost outsource the support to somebody else or take the package, support themselves and register with the NDIA. I know that is happening in New South Wales in the trial area there. There are rooming houses registering with the NDIA. It is something that has to have a close eye kept on. We need to be ensuring that no institutional service is able to access people's packages through the NDIA. But that is going to require the closure of state-run institutions as well. We cannot have one and not the other. We have to have a solid position.

There needs to be funding for appropriate community housing options, including public housing. There are many people who, with their package, can live in the community without being grouped together. Depending on what sort of support you have, some people might choose to share with one other person. Sharing their package can cover their support requirements after hours with a package of support covering their recreation activities or work requirements, or whatever they are doing during the day as well. We do not have to be locked into the model of grouping people. What tends to be happening is that we have moved from the first-group homes having three and four people to having five and six people—and now, in some cases, having nine and 10 people. We are just moving—

Senator MOORE: Slowly back.

Ms Williams : Exactly. All the research shows us that the bigger you get the less time and attention each individual gets. Even when there are more staff because of the ratio, the staff spend more time talking to each other than they do in dealing with, talking to and interacting with the residents.

We need to have more funding for independent oversight—which, I am sure has been said—of all residential services. We would contend that that has to be, often, independent of service provision and government. In our own experience, we have found that when we have had money to go out and provide information to those people who live in group homes about their rights, about respect and about the fact that they actually should not be yelled at or roughly handled and that they should get choices, people are often quite surprised about those things. They do not know that they have a say. They do not know that they have a choice. They do not know that they can speak up. Often, their lives are very isolated and very controlled by one service provider who they go to for a day placement as well. It is not always the case, but even then there is often not a lot of whistleblowing that goes on from the day services about things they might hear about in relation to what goes on at home. So, definitely, we need much more independent oversight.

We think that, for independent advocacy to be able to provide information to people, they need, first of all, to be able to get to people and offer them that information. We have found that we could not get to people. There was no way that we were going to be given addresses to even write to people, let alone go there and ask, 'Would you like some information? We have DVDs, we have people with disabilities who are trained, like Jane Rosengrave, to tell you about your rights.' We just could not get that information because of privacy concerns. But they are not private homes, so it is a twisting of people's right to privacy to actually lock out independent advocacy.

Quality compliance systems need to assist in prevention of abuse. We have found that when we have provided people with information they have revealed abuse to us, but they have also learnt that it is not okay. So we think providing people with rights information in accessible ways helps to prevent abuse, because people start to appreciate and understand that they have rights, and that there is advocacy that they can contact and talk to.

We think that there does need to be the highest possible standard of safeguarding processes, including safety screening of staff. We would go for the highest option. Victoria has lifted their game in terms of safety screening, just even in the last six months. But we would hate to see the lowest common denominator happen across the country. We would like to see that incident reporting is not just reporting—that it is actually based on improving the wellbeing of the person who was involved in the incident, and doing follow-through. Obviously there is the issue of prevention of further abuse, but often even the basic focus on the wellbeing of the person who has been abused is actually not followed through.

We believe there needs to be an independent complaints body that will investigate. We support some of the different bodies that are in Victoria. It has been great that there has been a Disability Services Commissioner, but we would say that there does need to be more investigation. It is great that they have a conciliatory approach and an educative approach with service providers, but somebody has to do the investigations and go in hard. If they are not doing it, there needs to be someone who does. But, also, they need to have the power to make orders, because we are seeing even with the ombudsman that they can only make recommendations, and they are just ignored. So, there needs to be a stronger investigative power that can document and also make orders around changes that need to happen.

CHAIR: Thank you for that very comprehensive presentation. I have a question about the comment you made about the rooming houses and the boarding houses and the NDIA. Have you brought that up with the NDIA?

Ms Williams : Yes, we have. There has been a Quality and Safeguarding Framework submission. Yes, we have definitely included it in that. Also, we have written to the state government and the NDIA. But, yes, we need to keep talking about it. It is very concerning. It is good that the ombudsman did put a big section in their latest report on the supported residential services. It is a real concern.

CHAIR: It came up in our last inquiry. A number of people were referring to carpetbaggers, and I thought that was a pretty good description.

Senator MOORE: Especially if there is government money involved.

CHAIR: Exactly.

Ms Rosengrave : The fees.

Ms Williams : Good one, Jane. Thank you for remembering. We brought along some of our community accessible forms of education that we take out to the group homes.

CHAIR: That would be very helpful for us to have a look at.

Ms Williams : And you have our permission to make extra copies of the DVDs.

CHAIR: Thank you. Those sorts of examples are appreciated and helpful. Thank you to everybody who has appeared today, and thank you for your submissions. It is very much appreciated. We do not have a date for our next hearing but we will definitely be having more hearings around the country. We have now done Perth and Melbourne. We will let people know in the very near future where we will be next. Thank you particularly to our witnesses with lived experiences. As I said to you at the time, it is invaluable to us. Thank you also to the secretariat and to Hansard.

Committee adjourned at 16 : 59