Public hearing: Homes and living, Melbourne - Day 1
COMMISSIONER SACKVILLE: Good morning, everybody. I welcome everybody present here today to this hearing of The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. I also welcome those people who are outside the hearing room and who are following the proceedings through live streaming or other means. My name is Ronald Sackville. I am the chair of the Royal Commission. I am joined today by Commissioner Roslyn Atkinson AO on my left and Commissioner Alastair McEwin AM on my right.
I commence by acknowledging the traditional custodians of the land on which we meet today, the Wurundjeri people of the Kulin Nation. I pay respects to their elders past and present and I honour the people who one day will take their place as custodians. I am shortly going to ask counsel to announce their appearances today. Before I do that, there are a number of parties who have sought leave to appear and leave has been granted. Those parties are: a witness who will be known by the designation AAG, the Victorian Department of Health and Human Service, Victorian Senior Practitioner Disability, Mr Arthur Rogers, Disability Services Commissioner, Yooralla, the Commonwealth of Australia, Dr Peter Gibilisco who will give evidence and the Office of the Public Advocate. Can I now ask for the appearances, please.
MS K. EASTMAN: If the Commission pleases, my name is Kate Eastman. I have been appointed Senior Counsel Assisting the Royal Commission. So I appear today and for this week with my co-counsel Mr Malcolm Harding of Senior Counsel and Mr Andrew Fraser, if the Commission pleases.
COMMISSIONER SACKVILLE: Thank you very much.
MS C. HARRIS: If the Commission pleases, my name is Claire Harris, and I appear for the Victorian Department of Health and Human Services and the Victorian Senior Practitioner Disability.
COMMISSIONER SACKVILLE: Thank you, Ms Harris.
MS J. FIRKIN QC: Good morning. If the Commission pleases, my name is Jenny Firkin QC, and I appear with Mr Christopher McDermott on behalf of Yooralla.
COMMISSIONER SACKVILLE: Thank you, Ms Firkin.
DR M. FITZGERALD: If it please the Commission, my name is Michael Fitzgerald, and I appear for Dr Peter Gibilisco.
COMMISSIONER SACKVILLE: Thank you. Dr Fitzgerald, isn’t it?
DR FITZGERALD: Yes.
COMMISSIONER SACKVILLE: Thank you, Dr Fitzgerald.
MS A. MUNRO: May it please the Commission. My name is Amy Munro. I appear on behalf of the Commonwealth of Australia.
COMMISSIONER SACKVILLE: Thank you, Ms Munro. I shall now my some brief opening remarks. – there’s one more.
COMMISSIONER ATKINSON: Sorry. One more.
COMMISSIONER SACKVILLE: I’m sorry. There’s one more.
MR M. BRENNAN: Yes.
COMMISSIONER SACKVILLE: There you are. You were hiding at the end of the table. Yes.
MR BRENNAN: Yes. May it please the Commission. I appear for AAG.
COMMISSIONER SACKVILLE: Right. And your name is ‑ ‑ ‑
MR BRENNAN: Manny Brennan.
COMMISSIONER SACKVILLE: Thank you, Mr Brennan. I will make some brief opening remarks. I shall then ask Ms Eastman who, as you have heard, is Senior Counsel assisting the Royal Commission who will make an opening statement, and after her opening statement, Ms Eastman will give the presentation of evidence. Before we do that, the interpreters will be sworn in.
INTERPRETER, SWORN TO INTERPRET
COMMISSIONER SACKVILLE: Thank you very much. This is the third public hearing conducted by the Royal Commission. The first was the one day opening hearing that was held in Brisbane on the 16th of September 2019. At that hearing, senior counsel assisting the Royal Commission and I explained the background to the establishment of the inquiry and set out our approach to the very large tasks that have been entrusted to us by the Terms of Reference, that is the document that defines the responsibilities of the Royal Commission.
At the opening hearing, both Senior Counsel and I made a number of observations about the terms of reference. I don’t want to repeat what was said there and the transcript. Those who wish to do so, can be consulted on the Commission’s website. But I do want to reiterate two significant points. First, the Terms of Reference are extraordinarily broad. We are required, among other things, to expose violence against and abuse, neglect and exploitation of people with disability in all settings and contexts. We are to do this by means that include the sharing of individual experiences. We are also directed to inquire into what should be done to promote a
more inclusive society that supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation.
Since we are required to encourage people with disability and their families and carers to share individual experiences, we have a responsibility to provide a forum in which people can share their experiences of violence, abuse, neglect or exploitation. And since we must inquire – under an obligation to do that so that the witnesses enjoy safety and comfort in their presentation. And since we must inquire into what must be done to promote a more inclusive society, inclusion of people with disability within the Australian community will be a constant theme in all of our hearings.
The second significant point that I wish to reiterate is that the Terms of Reference expressly recognise that Australia has obligations under the United Nations Convention on the Rights of Persons with Disabilities to promote the human rights of people with disability. The express recognition of Australia’s obligations under the UN Convention means that this Royal Commission must have a rights-based focus. We therefore must take as our starting point the rights under international law that Australia is required to recognise and protect.
I have referred to the opening hearing that took place in Brisbane. The Commission’s second public hearing was held over four days in Townsville from the 4th to the 7th of November 2019. The subject was the inclusive education of children with disability. The selection of that topic for the first public hearing on a matter of substance reflected the fundamental importance of education to the life opportunities of people with disability, just as it does to people without disability. In the words of the United Nations Convention, education is critical to:
...the development by people with disability of their personality, talents and creativity, as well as their mental and physical abilities to the fullest possible extent.
The hearing commencing today will focus on the living arrangements for people with disability, in particular the role of group homes. By “group homes” we mean accommodation in which services and support are provided, usually to between four and six long-term residents with disability. As we shall hear, one estimate is that about 17,000 people with disability live in group homes in Australia. Roughly one-third of those have some form of intellectual disability. The selection of this topic for the current hearing reflects the centrality of living arrangements to the dignity, independence and autonomy of people with disability. The general principles stated in Article 3 of the United Nations Convention include:
(a) Respect for inherent dignity, individual autonomy, including the freedom to make one’s own choices and independence of persons, and (c) full and effective participation in society.
As we shall also hear these general principles are carried further by Article 19 of the United Nations Convention which requires all state parties including Australia to
“recognise the equal right of all persons with disability to live in the community with choice equal to others”. Article 19 also requires Australia to “take effective and appropriate measures to facilitate the enjoyment by people with disability of this right, including measures to ensure that people with disability have the opportunity to choose their place of residence and where and with whom they live”. Article 19 specifically states that:
People with disability are not to be obliged to live in a particular living arrangement.
The emphasis in the United Nations Convention, on independent living and freedom of choice would be reason enough to give priority to investigating accommodation arrangements for people with disability. An equally compelling reason is that people’s homes or places of living are settings where violence, abuse, neglect and exploitation are apt to occur. As the United Nations Committee on the Rights of Persons with Disabilities noted in general comment number 5 in 2017, “people with disability have historically been denied personal and individual choice” and “have been presumed unable to live independently in their chosen community”. In the past, this has led all too often to institutionalisation, isolation, segregation and even abandonment.
It is certainly true, as we shall hear, that community attitudes and practices have changed from the days when people with a range of different disabilities were typically placed in large institutions, long known as asylums, in conditions that were extremely harsh, if not barbaric. From about the 1970s, largely as the result of advocacy by the disability rights movement, a process of what is known as deinstitutionalisation has occurred. The enactment by the Commonwealth Parliament of the Disability Services Act 1986 encouraged this process by recognising the importance of people with disability participating in the life of the general community. In consequence, very many people with disability were relocated from large institutions to alternative forms of accommodation notably group homes. Some, of course, remain in institutions such as the relatively young people with disability who are still accommodated in aged care nursing homes.
The focus of this hearing on group homes is an acknowledgement that, as a number of witnesses will tell us, since deinstitutionalisation began in the 1970s, small group homes have been the dominant option for people moving out of institutions and for people no longer able to live at home with their family. The focus on group homes also acknowledges the arguments that have been made by disability advocacy organisations that group homes create an environment conducive to violence, abuse, neglect or exploitation. It is very important that the Royal Commission examine evidence relevant to those claims. Although the principal subject of this hearing, that is, group homes, is different from the principal subject of the Townsville hearing, inclusive education, the approach we are going to take is similar.
As I have explained, it is part of our function to provide a forum for people with disability to share their experiences of violence, abuse, neglect or exploitation. At
the inclusive education hearing it was parents of students with disability who recounted the experiences of their children. We also heard evidence of the experiences of Queensland schools which are implementing a philosophy of inclusive education. In the course of this hearing, people with disability themselves will give evidence and provide accounts of their own experiences in group homes and other settings. Special care has been, and will be, taken to ensure the safety and wellbeing of each of these witnesses. It is possible that some evidence will be distressing to people in this room or who are following the proceedings.
It is important to appreciate that the purpose of eliciting this evidence is not to shock, nor is it an invitation to portray the witnesses as victims in need of sympathy. As has sometimes been said, people with severe disabilities do not seek sympathy but empathy, that is, the ability of one person to put himself or herself in the position of another person. Each witness is someone who has had the courage in difficult circumstances to exercise the freedom that every person should enjoy, to make his or her voice heard. Giving evidence to this Commission is a manifestation of the dignity and autonomy and independence of people with disability.
The evidence from people with lived experience of disability is designed not only to tell their individual stories but to use those stories to identify the policy and regulatory issues that the Royal Commission must address. In our public hearings we intend to go beyond examining specific cases of abuse, violence, neglect and exploitation, important as that is to the work of the Commission, and to consider what can be done to give practical effect to the principles underlying the United Nations Convention and the rights Australia is obliged to recognise and protect under international law. Therefore, we will be examining the bad things that have happened and continue to happen all too often with people with disability.
But we shall also be exploring policies and practices that offer the most promising prospects for eliminating all forms of abuse, violence, neglect and exploitation experienced by people with disability. Finally, before asking Ms Eastman to open, may I mention two particular matters. They relate to two documents which are available on the Royal Commission’s website. The first is an Issues Paper on group homes. This is a short document which asks a number of questions designed to assist people wishing to make submissions on the topics that will be addressed during this hearing. The idea is not to require answers to any or all of the questions, nor is the idea to prevent people making submissions in the form most convenient to them. It is purely a guide. The Issues Paper is available in Easy Read format. We encourage people with experiences to share or opinions to offer on the subject to respond to the Issues Paper.
The second document is a statement, in plain English, explaining how the Commission will protect the privacy and confidentiality of people who do not wish to disclose their identity or to reveal the information they provide to the Commission. The statement should alleviate the concerns some people understandably have had about engaging with the Commission. I encourage people to read the document or speak to someone who has. Ms Eastman.
MS EASTMAN SC: Thank you, Chairman. So this is the third public hearing of the Royal Commission and it is the first to focus on the area of home and living. As with our recent hearing in Townsville on inclusive education, this is also just the beginning. The Royal Commission wants to focus on what it means for people with disability to have a home, not just a place to live or accommodation. For all of us, our homes are central to our lives, our wellbeing and our security. Our homes provide comfort and refuge. Our homes are places we can be ourselves. Our homes give us a sense of belonging. Our homes are places where we share our lives with our families, friends, pets, neighbours and community. In short, a home is much more than mere bricks and mortar.
Today, people with disability will tell the Royal Commission about their personal experience of living in group homes. The witnesses who will give evidence about their life in a group home will shine a light on some disturbing incidents of violence, abuse, neglect and exploitation. For some people with disability, their experience of home has not had the features that I’ve described above. The Royal Commission will hear that people with disability may have no choice about where they live and who they live with. The Royal Commission will hear that for some people with disability their home is actually somebody else’s workplace. As a result, their homes are organised very differently. Their homes may be organised around the convenience for those who come into the home, not live there, but come into the home to provide services and supports.
The homes might be subjected to standardised routines and procedures. And people with intellectual disability who live in some group homes are described in some unusual terms, perhaps as service users, residents, clients, customers or even consumers. So it is against this background the Royal Commission will examine whether living in a group home creates a greater risk for people with disability to be subjected to violence, abuse, neglect or exploitation. So before I provide an overview of the evidence the Royal Commission will hear during the course of the week, I want to acknowledge that this hearing coincides with the International Day of People with Disability which will be celebrated tomorrow.
The United Nations says international days are occasions to educate the public on issues of concern, to mobilise political will and resources, to address global problems, and to celebrate and reinforce the achievements of humanity. The International Day of People with Disability was first proclaimed in 1992. It was proclaimed by the United Nations General Assembly following the Decade of Disabled Persons. At the time, the United Nations invited its member States – and that includes Australia – to quote:
Intensify their efforts aimed at sustained effective action with a view to improving the situation of persons with disability.
Over the past 27 years, the United Nations has continued its commitment to the rights of people with disability. The United Nations has worked to try to change attitudes and approaches to people with disability. Significantly, it encouraged its
member states to move from viewing people with disability as “objects” of charity, medical treatment or social protection, to change the attitudes to view people with disability as people with human rights, who are capable of claiming those rights, making decisions based on choices for their own life, exercising free and informed consent, as well as being active members of the society.
To that end, in 2006 the Convention on the Rights of Persons with Disabilities was adopted. The Convention, if I may use the shorthand CRPD, defines disability very broadly, and it reaffirms that all persons with all types of disability must enjoy all human rights and fundamental freedoms. Australia is a party to the CRPD, and as the Chair has noted this morning, Article 19 of the CRPD expressly addresses the right of people with disability to live independently and to be included in the community. And I won’t repeat the text of Article 19 but it highlights the importance of people with disabilities having the opportunity to choose their place of residence, where and with whom they live on an equal basis with others, and not to be obliged to live in particular living arrangements.
This hearing will examine the CRPD in some depth and specifically how the rights described in Article 19 should apply to the day-to-day lives of people with disability. Ms Rosemary Kayess, a senior lecturer at the Faculty of Law at the University of New South Wales, and also a member of the UN Committee for the Rights of People with Disabilities, has provided the Royal Commission with a detailed statement explaining how the CRPD works, what the rights mean and how these rights should be implemented in Australia. Many people giving evidence this week will refer to the CRPD and the importance of using a human rights framework for action, for the development of policies and practices and the decisions affecting the lives of people with disability. So we will acknowledge and celebrate the International Day tomorrow.
So I now wish to turn to an overview of the hearing. The Royal Commission will hear evidence that the mass institutionalisation of people with intellectual disability and what we now describe as psychosocial disability began in the 17th Century in Europe. These institutions were large, segregated facilities where people with these types of disabilities were housed in large groups, away from society and invisible.
Dr Ilan Wiesel will give evidence this week about the changes that started to occur in the 1960s and the move to what is described as deinstitutionalisation. He will explain how deinstitutionalisation occurred in Australia and the consequences for people with disability. He will tell the Royal Commission that one of those consequences was, initially, a very dramatic increase in the number of people with disability who were homeless or ended up in prison. The Royal Commission will hear about the emergence of group homes, initially in response to deinstitutionalisation, but over time group homes became the homes for people with disability who had never lived in large institutions but required support for day-to-day living.
As the Chair noted this morning, group homes are generally defined as housing for four to six people who are provided support in the home and access to the community; however, for all the changes that have resulted from deinstitutionalisation, there remains a question whether group homes are still institutions, albeit on a smaller scale. So this means examining some of the features of group homes that may, in turn, create a risk of violence, abuse, neglect or exploitation.
To this end, Dr Claire Spivakovsky will give evidence tomorrow about the use and abuse of restrictive practices in group homes and how this contributes to the risk of violence, abuse, neglect and exploitation. Professor Sally Robinson will also give evidence tomorrow, and she will explain that very little attention has been paid to the way in which people with disability feel and act about their own safety in group homes. She has researched strategies for people with disability to feel safe in their home. Later this week, the Royal Commission will hear from Associate Professor Patricia Frawley, and she will discuss a human rights framework for addressing violence and abuse in group homes and the importance of taking an approach that considers how disability, gender, age and culture intersect in relation to the experiences of abuse, sometimes referred to, in shorthand fashion, as intersectionality.
So the question might be asked, “Well, why has the Royal Commission started in Victoria?” And in that respect, the Department of Health and Human Services has told the Royal Commission that there are an estimated 1.1 million people living with disability in Victoria. In the period 2018 to 2019, about 5000 people have been accommodated in residential services in Victoria, being accommodation for people with disability where disability services are provided, and a group home is one form of residential service.
Victoria is presently in the process of transitioning its funding responsibilities for residential services to the National Disability Insurance Scheme, the NDIS. This hearing will not examine the NDIS. That doesn’t mean the NDIS is not of interest to the Royal Commission. This hearing will not, however, examine the funding arrangements or how people with disability engage with the NDIS, and those following the hearing can be assured that the Royal Commission will address these issues in future hearings.
The Royal Commission has started with the experience of living in group homes in Victoria because of relatively recent events which have received public attention and have been the subject of a number of inquiries and investigations. The Royal Commission’s role is not to replicate those inquiries. We have reviewed those inquiries, and we have reviewed the work undertaken by the advocates, the government, specific agencies and service providers. What the Royal Commission seeks to do is to focus and examine what has changed, with a particular focus on violence, abuse, neglect and exploitation of people with disability.
So this hearing will hear evidence about incidents of violence and abuse that have been deeply traumatic and have created deep scars for a number of people with disability, and their families, in Victoria. The Royal Commission is acutely aware that speaking about violence and abuse is distressing. We want to approach these discussions sensitively and in a trauma-informed manner, but we cannot shy away from exposing violence and abuse. It is why the Royal Commission was established. We cannot cover up incidents of violence and abuse by using euphemistic or indirect language. We can’t hide the treatment of people with disabilities who have experienced violence and abuse.
So I am now about to describe some incidents of violence and abuse that were exposed seven years ago in Victoria, and they have become a catalyst for change and a catalyst for action in Victoria. The following account of violence and abuse of people with disability is based on findings made by a Victorian County Court Judge, Judge Hampel, on 20 November 2013. I’m about to speak about matters that people may find deeply distressing, as I address descriptions of sexual violence. So I’m going to pause for a moment, and if anyone feels the need to temporarily pause the hearing of the Royal Commission or to leave the hearing room, the Royal Commission has no concern that people need to do so.
I want to tell you about a man called Johnny Kumar. On 21 March 2012, Vinod Johnny Kumar was charged with multiple counts of rape and other sexual offences on three women and one man with disability who were in his care in group homes provided by Yooralla. The Judge said all four people had severe levels of physical or intellectual impairment, and they all required assistance for the most basic activities of daily living. They all lived in supported accommodation with 24-hour care provided by Yooralla. Three of the four victims lived together in a house which accommodated a total of six residents, and the other victim lived in a house nearby. It also had six residents.
When Mr Kumar was confronted with the conduct, he initially denied any wrongdoing, but eventually he pleaded guilty to 12 offences and he was sentenced to a term of imprisonment for 18 years with a non-parole period of 15 years. Her Honour Judge Hampel delivered detailed reasons when sentencing Mr Kumar. This decision is publicly available, and it has been included in the tender bundle for this hearing. Mr Kumar’s criminal conduct was and remains shocking, and his ability to engage in the conduct undetected is disturbing. The following description of violence and abuse comes directly from the Judge’s sentencing decision. I have sought to use the Judge’s language and reasoning to provide the following summary.
Mr Kumar began work at Yooralla in March 2009. It was on a casual basis, and he was employed as a disability support worker. In August 2011, Mr Kumar was counselled following two reports of instances of inappropriate behaviour on his part. One involved the use of inappropriate language to a staff member. But the other was more serious, and it involved sexualised behaviour to a resident, namely, twisting the nipple of a male resident. Notwithstanding this counselling, Mr Kumar continued to be employed.
Between October 2011 and mid-January 2012, Mr Kumar sexually assaulted a woman the court called Ruth. That’s not her real name. Ruth was then 40 years old; she was described as having cerebral palsy resulting in spastic quadriplegia. On each occasion, Mr Kumar gave Ruth a shower or put her to bed, and this was around 20 times, he penetrated her vagina with his fingers. On occasions, he would also touch her breasts. Sometimes he would laugh whilst sexually assaulting Ruth in this manner. The charges involving Ruth are extensive. One of those charges involved the use of a pager. The staff were all required to use a pager which was activated when the residents rang a bell from their bed because they needed assistance. Mr Kumar put the pager clip in Ruth’s vagina. He placed the pager between her legs and then made her ring the bell that caused the pager to vibrate. The Judge said this charge was representative of like conduct on approximately 10 occasions.
Ruth didn’t tell anyone about this while Mr Kumar was a resident – worked at the residence. Why? The Judge said because she was scared of him and afraid he might hurt her. She said that she thought Mr Kumar would be angry and angry with her if she complained about his conduct, but she described him otherwise as being aggressive, bossy and a bully. The Judge described Mr Kumar’s offending towards Ruth as sickening.
Mr Kumar raped Jacqueline – again, not her real name. Jacqueline was described as having cerebral palsy and using a wheelchair. She, too, was 40 years old, and she, too, lived in the same residence as Ruth. In November 2011, Mr Kumar made deeply offensive sexualised comments to Jacqueline about her body. She reported Mr Kumar to another staff member; however, after making that report, Mr Kumar’s sexual offending commenced. Mr Kumar’s offending involved raping Jacqueline when she was showered. The Judge said that as he was engaging in this conduct, he would often say to Jacqueline, “You want it, I know,” implying that she was a prostitute. Mr Kumar called her a whore and other pejorative names. Jacqueline did not complain to anyone at the time. She said she didn’t think anyone would believe her word against Mr Kumar.
Mr Kumar also pleaded guilty to sexual offences in relation to a woman the Judge described as Kimberley, again not her real name. Kimberley was described as having cerebral palsy, and she was 38 years old at the time. Mr Kumar repeatedly raped – sorry, raped Kimberley on one occasion. That was in December 2011. And during the sexual assault he said to her, “I know you want it”. After assaulting Kimberley, about an hour or so, Mr Kumar came into her room and apologised, but said, “Don’t tell anyone about it or my mum will drop dead”.
The Judge found that Mr Kumar took steps to hide his offending in relation to Kimberley by making allegations about Kimberley. This resulted in Kimberley being reprimanded by a member of staff before Kimberley had been asked her side of the story. But as the Judge acknowledged in her reasons for sentencing, Kimberley was a woman of some strength, and when she was the subject of reprimand, she immediately reported Mr Kumar’s treatment of her. Notwithstanding
this, the Judge said Yooralla’s response was less than adequate and that Kimberley’s complaint about Mr Kumar was described in an incident report as sexual harassment.
In mid-February 2012, Mr Kumar’s offending conduct concerned a resident described by the Judge as Phillip, again not his real name. Phillip, who was 27 years at the time, had cerebral palsy and an intellectual functioning in the borderline range. In mid-February 2012, Phillip had been out for the day, and when he returned to the residence, Mr Kumar locked him out. Mr Kumar teased Phillip about trying to gain entry to the home. When Phillip was finally allowed in, Mr Kumar walked behind him, repeatedly pulling down Phillip’s pants, exposing his buttocks and saying, “Oh, your pants are falling down”, “Here they go again”. Phillip kept pulling his pants up and trying to get away. This incident was witnessed by Jacqueline.
It was only after this incident involving Phillip that Mr Kumar’s conduct started to be exposed. There was an investigation, and in March 2012 he was arrested and interviewed by the police. He denied any wrongdoing, but as I’ve said earlier, he eventually pleaded guilty to the 12 charges.
Her Honour made these observations on sentencing. She said:
This is offending of the greatest order and greatest gravity. It was a gross breach of trust.
She said to Mr Kumar:
You were employed as a carer for these people, whose vulnerability was increased because of their physical and intellectual disabilities. They were powerless to defend themselves or to physically remonstrate with you.
Her Honour later said:
No civilised community can countenance such abuse of the disabled, from whom the whole community has responsibility to care.
Her Honour said:
Disabled people are entitled to have their dignity respected, to feel safe in their homes and safe with those who are entrusted to their care. People have to take responsibility for making the decisions to place people with disability in care or to assist people with disability to make such a decision, and they should be able to trust that the people in whom they repose that care will be safe in care. The parents, family and friends of –
and she said to Mr Kumar –
your disabled victims and of disabled people generally should be able to feel that they are safe and will be treated at all times with dignity and respect.
Those who breach that trust in a manner that you have must understand that their conduct will be condemned, and they will be sternly punished.
Now, in addition to Mr Kumar, there are other Yooralla employees who have been convicted of criminal offences in relation to offences towards people with disability. Some of these offences did not occur in the context of a group home. In December 2014, Colin Hoyle was sentenced to a term of imprisonment for five years and nine months. At the time of his offending, he was in his 60s, and he sexually abused a 29 year old woman with intellectual disability who was attending day services provided by Yooralla.
The report of his sentence describes Mr Hoyle as explaining his conduct on the basis that he had become infatuated with the young woman and that he believed that there was a consensual relationship, and the report of the sentence notes that the Judge indicated that the young woman did not have capacity to consent to a relationship of that nature. The Judge noted that Mr Hoyle had previously been cautioned about his inappropriate contact with the young woman, and the Judge said he noted with regret Mr Hoyle’s employment had not been terminated at that time.
In June 2015, Timothy Hampson was sentenced to a term of imprisonment for six years with a non-parole period of four years. The reasons for sentencing of the Victorian County Court Judge are also publicly available. Mr Hampson had been employed by Yooralla for about 12 years, and at the time of his offending he was 51 years old. His offending was in relation to a 28 year old woman with autism. She was sexually assaulted in Mr Hampson’s office, and at the time of the offending some of the incidents were captured on video. The Judge described Mr Hampson’s offending as simply inexcusable, and the Judge described the profound impact on the young woman and her family.
In a statement provided by Yooralla for this hearing, Yooralla has told the Royal Commission that in January 2015 a former Yooralla employee had inappropriately touched two Yooralla customers, and that employee was convicted and sentenced to a two-year community-based order, 200 hours of community service, and for a period of 15 years placed on the Victorian Sex Offenders Register. All of these incidents of violence and abuse of people in Yooralla’s care are confronting and, as the Judges have described, sickening. These crimes may have occurred some years ago but they clearly continue to have an impact on the day-to-day lives of the individuals concerned and their families.
It raises the very obvious question: how could this happen? So these events have resulted in significant reviews and investigation by Yooralla. Yooralla has said that its direct experience of these tragic events has caused it concern, and it has said in a statement provided to the Royal Commission that it deeply regrets the abuse of people in its care. Yooralla was one of the first service providers to provide a submission to the Royal Commission. In its submission, Yooralla explained the steps that it has taken to address its failings and to implement systems to better protect people with disability in its care.
Its CEO, Sherene Devanesen, will give evidence later this week. It will be an opportunity for the Royal Commission to hear how Yooralla has supported the particular survivors that I’ve talked about earlier in relation to the impact of the shocking violence and abuse. The CEO will address Yooralla’s practices and procedures to prevent such violence and abuse for all of those in its care, and the Commission wants to know whether the measures that have been introduced into the past few years have in fact improved the safety and security for people in Yooralla’s care. While the focus may be on Yooralla, the Royal Commission is confident that the issues faced by Yooralla are not isolated. The lessons that may be learnt from Yooralla are likely to be relevant to service providers across Australia, and the Royal Commission intends to examine other service providers, their practices, policies and response to violence, abuse, neglect and exploitation.
Against that background, the Royal Commission will also hear evidence from experts, advocates, academics, explaining how service providers can provide safe homes. The Royal Commission will hear evidence from Colleen Pearce from the Office of the Public Advocate, the Community Visitors, and also evidence from Arthur Rogers, the Disability Services Commissioner in Victoria. They will talk about the effectiveness of the changes that have occurred in Victoria following a range of inquiries.
On Wednesday, the Royal Commission will turn its attention to the relevant laws and regulations that operate in Victoria. Ms Janine Toomey from the Department of Health and Human Services will give evidence about the department’s role as a service provider and its responsibility for regulating service providers and changes for Victoria with the transition to the NDIS. Again, we want to explore and test and understand the initiatives taken in Victoria to provide safer living environments for people with disability.
On Thursday and Friday, the Royal Commission will explore alternative options to living in group homes for people with disability, and to do so consistently with the human rights framework. As the Chair noted in his opening remarks, the Royal Commission has produced an Issues Paper. It is available on the Royal Commission’s website, and we encourage the whole of the community to engage with the Royal Commission to explore and examine these matters and to provide us information and assistance on issues concerning life in group homes and living arrangements for people with disability generally.
So I now turn to what will happen today. As I mentioned earlier, the Royal Commission will hear from current and former residents of group homes in Victoria and their families. They will share their experience of living in group homes and their perspective of life in a group home. The Royal Commission will hear evidence of their experience of violence, abuse and neglect. Some of the people giving evidence today, and the group homes in which they resided, will have pseudonyms that will be used during the course of the hearing, and parts of their statements. Some of the evidence will be subject to non-publication orders that have been made by the Royal Commission.
So this means that the identity of those persons or information that may lead to identifying those persons or entities cannot be published. The Royal Commission’s staff can assist anyone who requires information or clarification about the nature and the scope of these orders. I also want to make it clear that during this public hearing the Royal Commission is here to hear about the experiences of people with disability. It is not the purpose of this hearing for the Royal Commission to make findings as to whether a particular person or a particular service provider has breached the law, committed an offence, or breached a particular service provider’s policy.
The Royal Commission acknowledges that there has been a very short period of time for those who have leave to appear at this Royal Commission to consider the evidence, and we have not expected the service providers and the government to provide detailed responses or evidence on particular incidents or particular issues. In this respect, the Royal Commission is committed to ensuring procedural fairness, and it acknowledges the importance for providing an opportunity for persons and service providers to make submissions and provide information in response to some of the evidence the Royal Commission will hear during the course of this week. All material provided to the Royal Commission will be carefully and fully considered by the Royal Commission.
So before we hear from today’s witnesses, we will have a short break, but immediately before that break I need to deal with the inevitable administrative matters. So first of all, there are provisions in the Royal Commissions Act which have the very clear object of protecting witnesses who give evidence before this Commission. This was an issue that Dr Mellifont addressed during the course of the Townsville hearing, and so I will repeat what she said there. She said that we draw attention to section 6M of the Act. It provides that any person who uses, causes or inflicts any violence, punishment, damage, loss or disadvantage to any person on account of a person having appeared as a witness before the Royal Commission, or giving evidence before the Royal Commission, or producing documents to the Royal Commission commits an indictable offence.
The maximum penalty for such an offence is imprisonment. And the Royal Commission has previously noted the breadth of what that prohibition prevents. It extends to any damage, loss or disadvantage. As Dr Mellifont said in Townsville – and I will say again – it is important that any person who might be minded to engage in conduct, whether in person or by use of social media or other cause, that might in turn cause damage, disadvantage or loss to a witness who has appeared at this Commission, should be extremely mindful of the important legislative provisions that makes such conduct an offence.
Secondly, I want to deal with and acknowledge the traumatic effect of listening and watching some of the evidence given at this hearing. The hearings will be live web-streamed, as people will be aware, and it is the intention of the Royal Commission to approach its task in a thorough fashion with intellectual rigour, and this means that it will be necessary for different sides of debates on contentious issues to be heard. Some of those debates may be very confronting. For some, hearing arguments
contrary to your own opinion might also be very upsetting. For some, we acknowledge it may be a trigger for trauma. And so the Royal Commission encourages those watching, whether by web stream or here in person, to be mindful that the topics might be upsetting and we encourage anyone to seek support in that respect.
The Royal Commission has internal counselling and support services. Our team is made up of social workers and counsellors who are here to provide counselling and support to anyone engaging with the Royal Commission. They are also available over the phone. In addition, the Australian Government through the Department of Social Services has funded the Blue Knot Foundation to establish a specialist counselling support and referral service for people with disability, their families and carer, and anyone affected by the Royal Commission. The Blue Knot Royal Commission’s hotline number is 1800 421 468. I will repeat that, 1800 421 468, and it is available from 9 am to 6 pm Eastern Standard Time Monday to Friday, and 9 am to 5 pm Eastern Standard Time on weekends and public holidays.
Blue Knot provides professional short-term professional counselling and support, it’s a gateway to frontline counselling services, advocacy and legal support. There are also a range of legal and advocacy services that have been funded by the Australian Government and administered through the Department of Social Services and the Attorney-General’s Department. These include additional funding to organisations currently funded under the National Disability Advocacy Program for individual advocacy. The Commission has been advised that 50 of the NDAP-funded organisations will receive top-up funding, and advocates from the NDAP are able to help protect individuals’ rights to say what they want and also to help provide advice and support.
And finally, the Australian Government through the Attorney-General’s Department has funded the Legal Financial Assistance Scheme to assist individuals and entities meeting the costs of legal representation and disbursements associated with formal engagement with the Royal Commission. The Attorney-General’s department has also funded the National Legal Aid and National Aboriginal and Torres Strait Islander Legal Services to deliver free legal advisory services for people engaging with the Royal Commission. Further information about all of these support services and links can be found on the Commission’s website or by contacting the information line. And the telephone number of the information line is 1800 517 199.
Chair, those are my opening remarks. You will appreciate that it will be a busy and long week for the Royal Commission and for everybody who has cooperated in the preparation for this hearing. We welcome everybody’s cooperation and participation and, as I said earlier, if anyone needs support during the course of the week we will endeavour to make those facilities available. If that’s a convenient time to adjourn.
COMMISSIONER SACKVILLE: Yes. Thank you. Adjourn for 15 minutes.
ADJOURNED [11.32 am]
RESUMED [11.51 am]
COMMISSIONER SACKVILLE: Yes, Ms Eastman.
MS EASTMAN: If the Commission pleases, we now start to move to the witnesses giving evidence before the Commission, but before I do that, you may recall in my opening I referred to something called a tender bundle. So a bundle of documents has been prepared which incorporates the statements of the various witnesses coming to give evidence to the Royal Commission and a range of documents. If it’s convenient to the Royal Commission now, I may tender the tender bundle, and that will enable you, Commissioners and others in the room, with access to that material to be able to follow where particular statements can be found.
COMMISSIONER SACKVILLE: That’s a tender bundle that in hardcopy is in seven volumes. Is that the one?
MS EASTMAN: That’s correct, yes.
COMMISSIONER SACKVILLE: Yes.
MS EASTMAN: And perhaps if during the break we can identify the documents perhaps by an exhibit number and then identify each individual bundle.
COMMISSIONER SACKVILLE: Yes. Well, I think, perhaps, it might be convenient just to designate the tender bundle as exhibit 1.
MS EASTMAN: Yes.
COMMISSIONER SACKVILLE: And we can work out subdivisions as we go.
MS EASTMAN: Thank you.
COMMISSIONER SACKVILLE: Well, the tender bundle in all of its seven volumes can be admitted into the evidence before the Royal Commission. Yes.
MS EASTMAN: Thank you. Now, in relation to our first witness, Dr Gibilisco, there is a non-publication order that has been made, and if it’s convenient, I will read that out.
COMMISSIONER SACKVILLE: Yes, please do.
MS EASTMAN: So:
Pursuant to section 6D subsection (3) of the Royal Commissions Act 1902, I, the Honourable Ronald Sackville, AO QC, Chair of the Royal Commission established under Letters Patent dated 4 April 2019, as amended, to inquire into and report on violence, abuse, neglect and exploitation of people with disability, direct that (1) until further direction any references to the service provider in the statement of Dr Peter Gibilisco, and any other information appearing in any statement of Dr Gibilisco which identifies or tends to identify the service provider, is not to be published except to the Royal Commission, its staff, counsel and solicitors assisting, including contracted service providers for the purpose of exercising their functions and duties, and persons and entities granted leave to appear at –
in the document it’s described as public hearing 2:
…in Melbourne between 2 and 6 December 2019, their counsel and legal representatives.
And that order was made on 2 December.
COMMISSIONER SACKVILLE: Thank you. If anybody from the media in particular want a copy of that order they should contact a member of staff, and a hardcopy, I’m sure, can be provided so that there is clarity as to the terms of the order. Thank you.
MS EASTMAN: So our first witness is Dr Peter Gibilisco. And before we ask him to take an oath, can I refer the members of the Commission to where you will find his evidence. So there is a statement behind tab 8 and some accompanying documents behind tab 9, 10, 10A and 10B, if the Commission pleases.
COMMISSIONER SACKVILLE: Yes. Thank you. Dr Gibilisco, thank you very much for coming to the Commission to give evidence. We very much appreciate that. As has been explained to you, you may take an oath or affirmation. As I understand it you wish to take the oath. I will ask for the oath to be administered to you. Thank you very much.
<DR PETER GIBILISCO, SWORN [11.56 am]
<EXAMINATION BY MS EASTMAN SC
COMMISSIONER SACKVILLE: Thank you, Dr Gibilisco. If at any time you would like to take a break, can you let us know, and we will take a break to ensure you are comfortable. Now, Ms Eastman will ask you some questions.
MS EASTMAN SC: So the Royal Commissioners will see Dr Gibilisco is accompanied by two persons, and they are both his support workers. And I thought it might be helpful just to introduce – for them to introduce themselves to the Royal Commission so you know who they are and the way in which they are here to assist Dr Gibilisco this morning. So Christina.
MS IRUGALBANDARA: I’m Christina Irugalbandara. I’m Peter’s academic support worker.
COMMISSIONER SACKVILLE: Thank you.
MS DE BRUIN: And I’m Daniella De Bruin. I’m Peter’s academic support worker as well.
COMMISSIONER SACKVILLE: Thank you very much, and thank you for your assistance. Yes, Ms Eastman.
MS EASTMAN SC: So, Dr Gibilisco, can you tell the Royal Commission your full name.
DR GIBILISCO: Peter Michael Gibilisco.
MS EASTMAN SC: And you are currently an honorary fellow at the University of Melbourne.
DR GIBILISCO: Yes.
MS EASTMAN SC: You have written books about the politics of disability and social inclusion for people with disability as well as your experiences living in shared supported accommodation.
DR GIBILISCO: Yes.
MS EASTMAN SC: You have made a statement to the Royal Commission, and you did that on 24 November 2019; is that right?
DR GIBILISCO: Yes.
MS EASTMAN SC: And what you said in that statement is true?
DR GIBILISCO: Yes.
MS EASTMAN SC: And you would like to read that statement to the Royal Commission using your communication device?
DR GIBILISCO: Yes, I would.
MS EASTMAN SC: So may I invite you now to read your statement.
DR GIBILISCO: The following are two statements from my most admired academic colleagues, friends and peers. Professor Tim Marjoribanks, who was my PhD supervisor at the University of Melbourne:
I write to most strongly affirm and endorse the intellectual capabilities of Dr Peter Gibilisco and to affirm that he is extremely well positioned to make an important and well-grounded contribution to the disability Royal Commission. Dr Gibilisco earned his PhD in Sociology from the University of Melbourne, one of the leading universities in the world and consistently ranked as one of the best universities in Australia.
I was the supervisor of Peter’s PhD. So I am very familiar with his work including work he has completed since his PhD. His PhD research involved rigorous engagement with both theoretical and empirical material and the writing up of a 80,000 word thesis. This was then examined and passed by two eminent internationally renowned independent scholars. Both during and since the completion of his PhD, Dr Gibilisco has also written on issues relating to disability in both academic and popular publication outlets. This has included research-based books. Over many years, Dr Gibilisco has made a sustained intellectually rigorous and evidence-based contribution to debates of relevance to the focus of the Royal Commission.
Of particular note, he has been able to combine theoretical and empirical material with reflections on his own experiences to develop powerful narrative around the experiences of living with a disability and to develop proposals for how to further develop and enhance systems so as to benefit the lives of people living with disabilities. Such proposals have engaged centrally with policy debates while always considering the everyday lives of people. In conclusion and to reiterate, Dr Peter Gibilisco is extremely well positioned to make an important, independent, thoughtful and intellectually-grounded contribution to the work of the Royal Commission.
And the following is from Dr Bruce Wearne, who was my Masters supervisor at Monash University:
Dr Peter Gibilisco’s manifesto for the public support of those with severe disabilities is put forward by one who understands disability support as a professional analyst who also lives with the day by day working with public policies. We met in the early 1990s when he enrolled in an introductory Sociology elective at Monash University. At that earlier stage in his struggle with his condition, he was keen to bring economics and sociology together to promote social justice. We are colleagues and communicate regularly. I have closely tracked his university path and his public contribution. His intellectual development is interwoven with his awareness with social and economic issues
that arise in his own experience. He thus has an intimate sense of the strengths weaknesses and failures of public policies.
Peter’s path involved a relentless academic effort to be better educated. Sensing the structure and direction of contemporary society, he set about identifying some of the political consequences of neoliberal managing realism. His qualifications and publications witness to his emergent sense of professional responsibility. For some years now, he has continued to contribute as a social policy adviser seeking to professionally serve with pertinent insights those who serve disabled people at whatever level. His research received commendation from leading economists.
He wants to be heard as a professional and not just as a disabled critic. He knows the persistent stereotyping that arises when slurred speech is viewed as intellectual disability. He emphasises the crucial importance of the synergies of friendship in everyday care. He repeatedly reworks his policy suggestions in a professionally responsible manner. Peter continues to reflect upon and study his situation. His scholarly contribution invites those considering his views whether PCAs, facility managers, public servants or law makers to hear him with professional empathy.
Statement of Dr Peter Gibilisco:
Name: Dr Peter Gibilisco. Address known to the Royal Commission. Date: the 24th of November 2019. This statement by me accurately sets out the evidence that I’m prepared to give to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. This statement is true and correct to the best of my knowledge and belief. The views I express in this statement are based on my personal experience. Background: I live in shared supported accommodation in Noble Park which is run by [REDACTED]. I have lived there since 2011.
I am currently an honorary fellow of the University of Melbourne. I do research which is all available on my blog mainly about things that affect me. I completed a PhD in Sociology in 2005 and graduated in 2006. My PhD was titled The Political Economy of Disablement, a Sociological Analysis. I was diagnosed Friedreich Ataxia when I was 14 years old. Friedreich Ataxia is a rare progressive neurological condition that severely affects my mobility amongst other things.
The main symptoms of my condition include initial unsteadiness in walking, fatigue, sleep disturbance, incoordination of the upper limbs, reduced balance, reduced hearing, difficulty speaking, significant heart involvement, and it also affects my vision. Since I was 23 years old I have used a wheelchair. As a result of my condition I am unable to wheel myself more than one or two metres. I require the assistance of two support workers for transferring. I also
require assistance with all areas of personal care and require continual carer assistance to communicate.
Before I moved into the supported accommodation I lived in an accessible unit in Dandenong and received carer support. I was no longer able to live in my own residence because the Department of Human Services, as it was known then, could not allocate the extra three hours per day that were necessary for me to work safely and productively during the day in my own residence. I have found the move into supported accommodation resulted in extreme loss of control of my life. I have found it to be a loss to my way of life in a personal and social sense.
Standardisation of care. I have concerns that the standardisation of care leads to neglect of individualistic care needs. Services such as assistance with showering, toileting, mobility, clothing and so on are provided through standardised practices which can be stipulated by management at my supported accommodation. This leaves no room for individual support needs. From my point of view my disability is vastly different from the other residents living in my group home. There is no doubt that I need different methods of communicating and technologies to alert staff. Despite this I do not feel that these differences of disability have been considered by the managers when implementing their care.
A recent example of this was when I visited another facility run by [REDACTED] which I had hoped to move to, I was told by the staff at the other facility that my morning routine must be completed within 45 minutes. My morning routine can take up to two and a half hours, so this wouldn’t be suitable for my situation. In addition, it is a fact that there are an infinite number of disabilities and the people dealing with these require different forms of help and some of them will require more help than others. This standardised practice of ensuring every single resident’s morning routine is completed within 45 minutes does not, by any means, take this into consideration.
Another example is the buzzer I use to indicate that I need assistance. Everyone in the group home is given this buzzer. It is a white box with a triangular green button. When the button is pressed, a small red LED light flashes but no noise is emitted. Previously, I had a buzzer that made a loud noise when pressed. I accept that is easier for there to be one buzzer system that connects all residents to all staff but what if the buzzer itself is not compatible with me? I am not able to see the white box with the green button. My increasing blindness makes it difficult for me to see small objects, and even worse when the colours do not contrast. Because there is no noise emitted, when you press the buzzer I have no way of knowing if I have actually pressed this buzzer or not.
My problems with the buzzer have resulted in risks to my safety. In one incident staff found me at around 8 pm half out of my chair lying on the
ground. I had fallen into that position an hour earlier. It left me in a position where it was impossible to reach the buzzer, and here I was vomiting and yelling for one hour. On another occasion in the middle of the night I was in a very uncomfortable sleeping position in bed so I called for assistance by using my buzzer. No one turned up. I found out the next morning that those on duty could not find my room key to come and assist me. Then later that day, my father came to visit. Straightaway he looked at me and said, “Are you okay?”, because he could see I was not. I asked him the same question back, because it was strange of him to turn up suddenly. He explained that he had received a call from staff at my group home at 2 am informing him of the situation, and mentioning that they would call him back if they couldn’t access my room.
But since then he’d received no further calls to let him know what had happened. Understandably, he was worried and decided to visit me. This episode was irresponsible, especially when they had already contacted him, a 75-year-old at 2 am. Abuse. In April and May 2018 I suffered horrifying incidents whilst living in my shared supported accommodation. The first incident occurred in the early morning of the 25th of April 2018. After being put to bed I fell asleep for a bit. I am a light sleeper. Around 2 am I noticed someone coming into my room. Because it was very dark they came in without turning the light on and without verbally introducing themselves. Even with my poor eyesight I could still see the form of the body and identify that it was a staff member whom I will call “David” – not his real name – who was rostered that night. He was the only staff member who was rostered that night.
That night I had three doonas on. One was on me as normal. One was put on the top half of my body and the other was folded in half near my legs. He took off the bottom doona to gain access, and as soon as I had my doona off my legs started to spasm from the cold. At that point he tried to molest me. I was very reluctant and I was telling him to piss off and to get out of my room. It took a while but he eventually left my room. My leg spasms were quite extreme, so the next morning I told the support worker, who was “David”, to put my doona back on and he did. The second incident occurred on the 2nd of May 2018. This time it was a bit different because he entered my room at around quarter past 11. I knew this because the lights outside the room were still on. That night was also “David’s” shift. He pulled off a doona and tried to use his hands to grope me.
I struggled violently this time and I yelled at him to stop, but he didn’t listen, nor did he communicate back with me in any way. Both times he did not speak to me at all. Afterwards, he must have put the doona back on me before leaving because by 4 o’clock when I rang the buzzer for him he said that the doona was already on me. These two incidents were reported to [REDACTED] management on Thursday May 3rd which she then reported to the police. After reporting the incidents to the police who were very compassionate about my situation, they were very much looking forward to me taking further legal action. To do this would be for me to act in a character that is well beyond my
norm. So I did not proceed any further and left the matter to my service provider which was a huge mistake.
I did not want to take further legal action on my own. I had hoped that when I left the matter to my service provider, it would be resolved. Further incidents of this nature have not occurred after the last incident. However, I have informed management numerous times with regards to my feelings towards people entering my room. Despite this, people still enter my room without my permission and sometimes without my knowledge. I realised this later when some of my personal belongings are not in their original place. Sometimes people enter my room without acknowledging my presence so I can hear them in my room but they do not say anything to me. This makes me feel very unsafe, and also annoyed that it is something that is still happening. [REDACTED] has not put in adequate steps to make me feel safe and comfortable in this space.
My hope for improving support for people with disability. In terms of what has worked for me, having a good team of support workers who have spent time with me every day and come to understand my disability has been highly beneficial. This is especially the case for my academic support workers whom I hire independently outside of the disability service providers. The result of my relationships with my support workers can be seen in my achievements, both academic and personal in recent years, including the publishing of my third book, publishing an article or blog post almost every week and gaining access to the NDIS. The support system that has been created here is one that is tailored to my particular needs and causes no harm because it is not standardised.
In addition to this, informal supports such as those supports I get from my close friends and family have also helped me continue pushing for justice in the disability sector. Success for me, like many others is an ongoing dream but I tell myself that I must be realistic. I have had to learn the discipline of living within the confining frustrations of Friedreich Ataxia and its associated problems including the social ones. I simply want to live my life as much as I can on my own terms, that is, I am happy and even eager to play the best hand with the cards I’ve been dealt. This is my first priority. If this seems like a cry, it is not a cry for sympathy but instead for empathy. I believe that pragmatism, altruism, passion and empathy are the key factors that need to be affirmed in ongoing positive action if a workable disability sector is to provide the service it is to provide.
In relation to pragmatism, we need to look beyond one size fits all theory and be open and honest about our plans for the future. An individualised form of practical thinking is a high priority in today’s disability sector. I consider that altruism which is closely aligned with selflessness can be used to the advantage of disability sector workers. Passion refers to our need to desire to act, seeking to achieve our goals. Usually, judging on my own principal disability support
worker for a client like myself they must be extremely passionate. That is, as my needs change my supports will also change. Empathy is the ability to put yourself in another person’s position. True empathy is always found from discovering the true goals of the person with severe disabilities. To discover those goals a support worker is then more able to judge the cared for person’s thoughts, feelings and actions and provide the best care possible.
Last year I gained access to the NDIS. For the most part this has been a positive experience. However, I believe that the supported independent living (SIL) component is diminishing the NDIS core principles of choice and control. I set out my thoughts in a blog post which I attached to this statement. I have also written an open letter to the NDIS explaining how the SIL has negatively affected me which I attach to this statement. In conclusion my statement to the Royal Commission reflects my experiences in shared supported accommodation. My latest book, Six and One Half Years on a Dunghill: Life in Specialist Disability Accommodation, is further testament to this and provides an overall conclusion to the trials and tribulations I faced while living in this facility.
But this is not all that is revealed in my book. I believe my book is of utmost important in the fight to strengthen and empower people with disabilities and provides crucial evidence for support providers and policy-makers. That being said, I hope this will not be side-tracked when my new book is released soon.
COMMISSIONER SACKVILLE: Thank you very much, Dr Gibilisco. Yes, Ms Eastman.
MS EASTMAN SC: So Dr Gibilisco, I’ve got a few questions that I would like to ask you. You’ve talked in your statement about stereotypes and stigma relating to your disability. What do you mean by this and can you give us some examples of how you’ve been affected?
DR GIBILISCO: For Friedreich Ataxia patients, the stereotypes and stigma associated with its physical qualities makes communicating a very frustrating experience. Often people who try to communicate with me have misinterpreted what I say and it will sometimes take a very long time for them to realise that. Other times, people have come to their own conclusions about what I need and have acted on their own accord on my behalf. This happens more often than not. Sometimes the person may get impatient or agitated while working out what I’m trying to say and it takes too long. My style of communication is unique to me as my experience of Friedreich Ataxia is unique to me.
Some of the factors that affect my communication are ... severe vision impairment, hearing loss, severe loss of mobility and other physical abnormalities. These prove to be intensely problematic in terms of my communication and I have had to work around these factors when I try to keep up my conversations with people. In doing so I have had to deal with the disappointments of various debilitating stereotypes,
stigma and ... which in fact have no basis in reality. Very recently I experienced another example where I was reduced to a stereotype. The professional person, an ambulance officer, could not understand what I was trying to say to her and why I had called for her. As a result, she proceeded to explain to me and my carers that the call I had made was obviously due to a mental impairment.
Just because I cannot adequately communicate does not mean that I have an intellectual disability. If we had time I could give you plenty of other examples of this kind of situation where this kind of thing happens. It simply redefines the situation and the person concerned. “Me” is actually ignored or overlooked.
MS EASTMAN SC: Has your experience of stereotypes and stigma affected the choices that you make about where you live and the home environment, and if so, can you tell the Royal Commission how that has affected your choices?
DR GIBILISCO: Of course. The main problem once again stems from communication. My communication is second rate because my speech is unintelligible. Many take my speech problems at face value without realising that I am constantly working in resistance to the stereotypes. My physicality is such that a lot of people depend on stereotypes and stigma to try and interpret what I am saying, because it is very difficult to understand me when I speak. But my qualifications attest to my understanding of the situation I’m in and the way in which I’m being managed. I am an intelligent individual and I know when the care I’m being provided is inadequate. I don’t like being treated as an object and I know I’m a difficult person at times, but the experience of stereotypes and stigma suggest that I am being avoided by the people in my home environment.
MS EASTMAN SC: Now, with Daniella’s help what I might do is just jump to the very last question that I wanted to ask you. Is that possible, Daniella? So Dr Gibilisco I want to ask you this: are there any particular changes you think are required for people with disability to have choice and control about where and with whom they live?
DR GIBILISCO: This is a meaningful question that I would have to spend a lot of time researching and discussing. How much time have you got? I cannot give you an answer at present, but it is important to keep in mind that choice and control need to be exercised by a person who is being assisted by one who understands what adequate care means and this person’s needs.
MS EASTMAN SC: Dr Gibilisco, thank you very much for coming and sharing your experiences with the Royal Commission today. We greatly appreciate your assistance.
COMMISSIONER SACKVILLE: May I add to what Ms Eastman has said, the appreciation of the Commission. We know that it’s not an easy thing, Dr Gibilisco, to come and give evidence in this environment and we, too, greatly appreciate your
attendance and the care and effort you have put into sharing your thoughts with us. Thank you very much.
MS EASTMAN: So, Chair, may I also mention, as will be apparent from the evidence, the service provider’s name was redacted and the service provider has indicated that it will provide a submission and maybe some material to the Royal Commission addressing some of the matters that have been raised in the statement. If the Commission pleases.
COMMISSIONER SACKVILLE: Thank you, Ms Eastman.
MS EASTMAN SC: That concludes Dr Gibilisco’s evidence.
COMMISSIONER SACKVILLE: Should we take a short break?
MS EASTMAN SC: That may be helpful. Not very long to just let – to let those on the monitor and in the room know – just to make a changeover in terms of our witnesses this morning.
COMMISSIONER SACKVILLE: We will take a short break. Thank you again, Dr Gibilisco.
MS EASTMAN SC: Thank you.
<THE WITNESS WITHDREW
ADJOURNED [12.04 pm]
RESUMED [12.31 pm]
COMMISSIONER SACKVILLE: Yes, Ms Eastman.
MS EASTMAN SC: If the Royal Commission pleases, Mr Harding will be taking the next witness.
COMMISSIONER SACKVILLE: Thank you.
MR HARDING SC: Commissioners, before we commence there has been a pseudonym direction given by the Commission in respect of this witness who has been given the initials AAI, but wishes to be referred to in the course of her evidence as Ms A and also a pseudonym direction in respect of her daughter which is AAH. Further, there has been a direction not to publish being given by the Commission on the 22nd of November 2019, pursuant to the Act.
COMMISSIONER SACKVILLE: You want to read that direction out?
MR HARDING SC: Yes.
COMMISSIONER SACKVILLE: You don’t have to read, I think, the entirety, just the operative part.
MR HARDING SC:
Until further direction the names and identifying information of AAI and AAH are not to be published except to the Royal Commission, its staff, counsel and solicitors assisting, including contracted service providers for the purpose of exercising their functions and duties, persons and entities granted leave to appear at the Public Hearing into Homes and Living and the counsel and legal representatives and persons summonsed to give evidence during the Public Hearing into Homes and Living.
COMMISSIONER SACKVILLE: Thank you very much. Ms A, if I can refer to you in that way, as has been explained to you I am sure you can take an oath or affirmation as you wish. And I will ask for that to be administered.
<AAI, AFFIRMED [12.33 pm]
<EXAMINATION BY MR HARDING SC
COMMISSIONER SACKVILLE: Thank you. Please sit down. And thank you very much for coming to the Commission and giving evidence. I will now ask Mr Harding to ask questions. I’m sorry. Mr Harding will ask you some questions. Thank you.
MR HARDING SC: Thank you, Chair. Ms A, you live in Geelong.
AAI: I do.
MR HARDING SC: And you have a daughter ‑ ‑ ‑
MR HARDING SC: ‑ ‑ ‑ and a son as well.
MR HARDING SC: And the subject of your evidence today is your daughter.
AAI: That’s correct.
MR HARDING SC: And have you made a statement for the Royal Commission?
AAI: I have.
MR HARDING SC: And is that statement true and correct?
AAI: I believe – yes.
MR HARDING SC: And you wish to read your statement, do you?
AAI: I will read most of my statement. I might skip a couple of bits depending on time. I know we’re limited. So ‑ ‑ ‑
MR HARDING SC: Yes. Thank you.
COMMISSIONER SACKVILLE: You do it in the way that you would like.
AAI: Okay. Thank you:
I live in Geelong, Victoria with my husband. I have a daughter who is 34 years old. I also have a son who is 41. My daughter is a happy person mostly. She likes to socialise, go sailing, swimming and to the movies. She loves to go shopping and have coffee with her friends, and she also loves to spend time with her family. My daughter has an intellectual disability and arthrogryposis. This is a condition which means her muscles are smaller and do not work like other people’s. Her muscles often pull her bones out of joint, and she has contractions. She is non-verbal and cannot walk unassisted.
She uses a wheelchair and can also use a walker if she’s given assistance to get into it. She needs supports in all areas of her daily life such as feeding, toileting, drinking, and she needs 24-hour care. My daughter currently lives in a family-owned group home in Geelong, the Geelong group. There are five residents in the Geelong group home, all of whom require 24/7 assistance.
As AAHs parent, I made the decision to move her to the family group home because I was looking for a house that shared my values and expectation about the support she needs. I wanted a place where my daughter might enjoy an ordinary life. To me, that means a life without restrictions. She should have the ability to decide the things she wants to do and take risks if she wants – if she wants to such as shaving her legs or not having dinner if she doesn’t want to. I wanted a place that I felt would let her live her life in the best possible way, close to her family, a place where I could support her with advocacy if needed.
Before she moved to Geelong she lived in a group home in Echuca provided by Murray Human Services. Echuca is about four hours from our home in Geelong. There are six high need residents in the Echuca group home. Prior to the Echuca group home, she lived at home and was approximately 22 years of age when she moved into the Echuca group home. My husband and I previously lived in Kyabram, but – which is just outside of Echuca, but moved to Geelong while she was still in Echuca.
We moved because of my work. I wanted to move her out of the group home in Echuca because I was very concerned about many incidents over the years that had happened there and because I wanted to be closer to her – to us in Geelong. The NDIS scheme did not roll out in Echuca till 2018 and I was unable to move her to Geelong to be with us until she had a NDIS plan.
When she was at the Echuca group home I took her home for most weekends for eight years. The family could not continue to have her every weekend after our move to Geelong due to the travel and distance. It was also getting harder for us to carry and lift her without equipment. My husband and I had very little equipment at home to be able to care for her for extended periods. We were only able to take her home every third weekend in the end.
My experiences. Ever since my daughter moved into the group home accommodation, I’ve often felt let down by the support that is – that was provided to her. I had felt that unless I was checking to ensure she was being cared for properly and advocating for her to be treated like an ordinary person with her own preferences and views, she could not receive adequate care. I felt that I had to keep the pressure on her support workers and service providers to make things happen for her such as being treated equally, being given the ability to express preferences about things such as what she wanted to eat, when she got up and when she went to bed. Just those ordinary things. That never happened.
I have at times worried about making complaints about her treatment to the staff management at all the service providers because of concerns that there could be repercussions, and I wasn’t there, and she was so isolated. I’ve also felt that when bad things have occurred she has not been – I have not been involved properly. For example, I’m not often told about incidents until after something I have noticed. An example of this was about four years ago. I arrived to visit, and I noticed her tooth was broken. When I asked staff at the Echuca home what had happened, they said she had been left unbelted while sitting on the toilet. As a result, she fell and broke her tooth. I didn’t know about this until I’d visited and noticed her tooth.
I think group houses can work when they treat the person – treat the needs of the person with a disability as the same needs that everyone else has and if they value the person with a disability. If you are not given the same opportunities and the same choices as people who do not have a disability, then your life
becomes difficult. In my experience and observation, management seems to be very fixed on ticking boxes for compliance. And that leads to a bureaucratic approach to life. Instead, support workers and service providers should be working with people with disability to resolve some of this imbalance.
I understand that service providers need to look after their staff. However, I think there needs to be a more balanced approach where the needs of both staff and people with disability are looked at. There needs to be understanding that a person with a disability can make decisions about their life. I also think there needs to be a cultural shift for service providers in group homes. They need to understand that it is the person’s home and that they have the right to make decisions about their life.
People with disability should also be allowed to take risks. For example, the service provider at her Geelong group home had a policy that they could not support a person with a disability to shave their legs. I pointed out that they surely assist men who need to have their faces shaved. It is these small everyday things that make an ordinary life. I think that these things – these small everyday things are missed by support workers because they’re constantly busy or because of staff turnover. I have since been able to get them to assist my daughter to shave her legs but it took a lot of work.
Another example is her choice of when she wanted to go to bed was taken away for her. When she is at home with us in Geelong she chooses when she wants to go to bed. However, when she was in the Echuca group home, she was put to bed at 7 pm regardless. I’ve observed that she was not offered choice about many things in her life. For example, support workers do not ask her whether she would prefer tea or coffee. They just chose for her. Support workers need to take the time to learn to how to communicate with her and understand her preferences.
This is really difficult when staff change all the time. She used to use a Mini Mo to communicate. It’s an electronic device on her wheelchair which allowed her to choose from a list of words which could – would then be spoken. However, when she started going regularly to a day program, the Mini Mo was taken off her because they said it distracted other clients. I tried to teach her support workers to use it, but it didn’t last. The support workers often didn’t stay around very long, and I would then need to teach people again and again. This has made it much more difficult to communicate with her.
My experiences and concerns about her are different because – between the Echuca group home and the Geelong group home. At the Echuca group home, I was concerned about not being informed when something happened and not being properly involved when it did. At the Geelong group home, I had fewer concerns about how she is treated. However, I’ve been struck by the strict application of institutional rules which limit her from doing ordinary things as an ordinary person.
Some examples of this. During her time at the Echuca group home, there were events concerning her that troubled me. In approximately 2015, I arrived on a Saturday at about 10 am to pick her up, and I noticed that there were no staff in the home at all. I waited 30 minutes before taking her home. I yelled out to see if anyone was there. I looked through all the rooms. All the other residents were all still in bed. I also went out the back and called out, but there was no response by anyone. When I found her she was in her wheelchair and had been placed by a member of staff under the air-conditioning unit with the wheelchair brakes on. She was shivering and very cold. I could tell she was absolutely freezing.
I wheeled – she can wheel herself a small distance, but she is not able to get her brakes off by herself. I then wrote a note to say I’ve taken my daughter. I did not sign the note to see if staff would call me to check it was me who had taken her. After I left with her, I waited about one and a half hours to see if staff from the group home would contact me. I then rang [REDACTED] to make sure someone had turned up to support other people who lived in the group home. By that time, staff were at the house.
When I raised my concerns with management they told me that the staff insisted that they were there. They said they must have been out the back. I had previously made a complaint to the Disability Services Commissioner about her rent. I raised the incident about staff not being at the group home with –
sorry – I raised the incident about not being at the group home with the DS – with the Disability Services Commissioner as part of the complaint. My son and I participated in conciliation with the house manager and another manager. During conciliation [REDACTED] had accepted that things would be better and said they would improve. As a result of my complaint and conciliation, we agreed on a plan to improve things. This worked for a while. Then the house manager who was involved left their role and things went back to the way they were. I feel this is an example of how I have had to monitor what happened to her in the Echuca group home and ensure she’s been properly cared for and supported all the time.
In 2015, a disability support worker from the Echuca group home reported to the Department of Health and Human Services that she had witnessed another worker hold my daughter’s nose to make her swallow her medication. I was not informed of this at the time. I learned about it later when a support worker asked me if she usually had trouble taking medication. I told her that she was usually very good at taking medication unless she was really unwell.
She then told me what had happened. [REDACTED] did not involve me, nor did they ask if I wanted to be involved in investigating what had happened. Accordingly I’m relying on what I was told by the support worker about what had happened. My complaint is that the service provider failed to notify and
involve me in a timely manner. DHHS contacted me around the time I found out about the incident. They said they were looking at how [REDACTED] had handled incidents. DHHS spoke with me about their processes. I let them know I was not happy with the processes because I did not think they properly supported my daughter or her family. I was also concerned that the Echuca group home did not let other staff members know what had occurred meaning she was not given additional support at the time because no one knew about it.
In approximately November 2018 whilst still at the Echuca group home, my daughter was badly burnt. Staff told me that she had accidentally tipped a cup of coffee over herself. At the time of the burn, staff phoned me to tell me about it. They said it was not very serious, but they would take her to the hospital to get checked out. I offered to drive to Echuca, and they told me it was unnecessary. I received a call later that night to tell me that she was being air lifted to the Alfred Hospital in Melbourne. I was shocked because staff had downplayed the injuries so much that I feel it was typical of how events involving her were reported to me.
She ended up at the Alfred Hospital burn unit for a week. I also contacted – and she also contracted a severe infection in hospital and almost died as a result. After her infection had cleared, she went back to the group home. I stayed in Echuca for a few days to ensure she settled back into the group home all right. One day I went to the group home at 10.30 am. When I arrived she was being showered by a support worker. I could see faecal matter on her bandages that covered her burns.
I asked the support worker what was going on. She told me that when she arrived at work that morning she found my daughter in a dreadful situation covered in faeces. She told me she was really upset. I then also found out that she had not had her breakfast or anything to drink, nor had she had her medication that morning, and it was 10.30. At that time, she takes medication for epilepsy, pain and other conditions including reflux. She had not had any of those medications that morning. This was despite the fact that she is funded for one on one support during the morning hours.
Following this incident, I complained to one of the managers of the Echuca group home. This manager had been liaising with me about her burns. I also made a complaint to the Disability Services Commissioner about the burns. An investigation was conducted in relation to her burns. They told me they could not let me know the outcome of their investigation. I do not know why they couldn’t provide this information to me.
In her transition to the Geelong group home there had been some difficulties in many – in some ways. The provider managing the house has many different policies and rules that we didn’t know about before she moved in. For example, the service provider at her new group home did not accept reports and assessments conducted by occupational therapists when she was in the
Echuca group home. She’s able to use a walker to move around small distances but she needed to be lifted on and off the walker in her new home.
The provider wanted another OT assessment on each type of equipment that she uses. They didn’t accept previous reports I had that said she could be lifted on to the walker. As a result it took nearly 10 months to get her using her walker. This really impacted her because she was not able to exercise at all. Exercise gives her overall benefits. Since moving into the new home I think that she has had some illnesses as a result of her lack of movement. In her new home everything from sunscreen to Sorbolene and toothpaste needed to be signed off by a doctor before the staff could use it on a resident. This has now changed as a result of both regular meetings with management and also a change in quality management who are now more willing to listen to the families of people with a disability living in the home.
The staff and management at the new home have been very good at talking through issues with me. We have regular meetings with management and we also have whole of house meetings with all families and management to talk about issues and strategies to assist residents to live their lives and to respond to concerns raised by families. It has been very empowering to have a voice and encouraging to see changes being made after consideration. This enables me to better support her. She’s a lot more settled and content in the Geelong group home. She’s trying new activities and enjoys being closer to her family.
COMMISSIONER SACKVILLE: Thank you very much for that statement. Mr Harding, yes.
MR HARDING SC: Ms A, just in light of the time, I’ve got some additional questions but I will be a little – cut to the chase in relation to some of them. In relation to paragraph 15 you speak about how you were informed about your daughter’s broken tooth. Did you form the view that it was being taken seriously?
AAI: I was not informed about her tooth until I noticed. So I didn’t think they were taking it seriously. They didn’t take her to the hospital dental clinic to have it checked when I repeatedly asked them to do it. So no. I don’t believe that it was taken seriously.
MR HARDING SC: And you also spoke about a situation in which your daughter was left under the air-conditioner, and you raised it with staff?
AAI: I did.
MR HARDING SC: What was the reaction?
AAI: I met with management to talk about the situation.
MR HARDING SC: Yes.
AAI: And I was really concerned about her being under the air-conditioner but I was also really concerned that no one was there. They spoke to the staff members who swore they were there. It was hard to dispute it any further. But I certainly started to get the cold shoulder from staff after I spoke to management.
MR HARDING SC: Thank you. And you also speak in your statement about your daughter being forced to swallow her medication. And you spoke about speaking with the DHHS about that. Were you informed of the outcome of their processes?
AAI: So after – after I spoke to them they were really looking at how – how I felt – what had happened was they were really wanting [REDACTED] to go to counselling. [REDACTED] is non-verbal and I really couldn’t see the point of it. What I would have liked them to do is inform other staff members so that they could support [REDACTED] because I – to me it was terrifying that someone would hold her nose, that she can’t speak, she can’t tell anyone and she can’t move. So it would have been terrifying. And so I said to them it’s no use sending her to counselling. You need to tell someone to support her but that never happened. So they looked at the processes of what could be better for that and they wanted to take advice on what I had said about staff supporting her through that.
MR HARDING SC: Thank you very much. No further questions, Commissioners.
AAI: I do have a statement I would like to read if that’s okay, just a very quick one.
COMMISSIONER SACKVILLE: Is it a nice brief one?
AAI: It’s pretty brief.
COMMISSIONER SACKVILLE: Okay.
I would just like to say that as a parent – and I don’t believe I’m alone in saying this – we worry about what happens when we are no longer available to advocate on behalf of our children. I find it so difficult to get every worker on the same page all of the time as the workers change so often and the communications between staff does not seem to work all the time. I am frustrated to see people sitting around not engaged in life and day-dreaming away their days. It has improved but I still find myself visiting and seeing the same things. There are some wonderful support workers who I have learnt to trust, and I’m definitely aware of the workers who will engage with my daughter, but I cannot count on them being there all the time. Hence my need to keep pushing for change.
I have found with the Geelong residence the parents are a strong force and we have bi-monthly meetings with management to strategize and improve things. As Osborne describes in 2006 in the following text is what I would consider the
beginnings of an ordinary life. I would love for people with disabilities whenever they live to experience the good things in life: dignity, respect, acceptance and a sense of belonging, able to exercise one’s capacities, a voice in the affairs of their community and society, opportunities to participate and at least a normative place to live free from abuse, neglect and apathy.
We as a society have an obligation to our most vulnerable and marginalised people of Australia to continue to work towards these imaginings, not treating them as a burden or as a charity but supporting them to a life that can add value to our communities. These beginnings need to start in the home whether it be in a family home or a group home.
COMMISSIONER SACKVILLE: Thank you very much for that.
AAI: Thank you.
COMMISSIONER SACKVILLE: And thank you very much for the caring thought you’ve given in preparing your statement and for coming to us and sharing your thoughts with us. Thank you so much.
AAI: Thank you.
COMMISSIONER SACKVILLE: Thank you.
<THE WITNESS WITHDREW [12.57 pm]
MR HARDING SC: Commissioners, can I indicate that Ms A refers to a service provider by the name of Vivid who have indicated that they intend to file a submission.
COMMISSIONER SACKVILLE: Thank you very much. Ms Eastman how long would it be convenient for the adjournment?
MS EASTMAN SC: Probably an hour, if that’s convenient to the Commissioners.
COMMISSIONER SACKVILLE: Very well. We shall return at – I won’t say 1.58 – we will return at 2 pm.
MS EASTMAN SC: 2 pm. Thank you.
ADJOURNED [12.57 pm]
RESUMED [2.01 pm]
COMMISSIONER SACKVILLE: Yes, Ms Eastman.
MS EASTMAN SC: Thank you, Chair. The next witness is using a pseudonym, and she will be identified as AAG. And the witness is giving evidence in relation to her daughter’s experience and her daughter will be identified as AAF. And in relation to the statement provided by AAG, you will see a copy at tab 11 with some accompanying material at tab 12, 13 and 14 of the tender bundle. And before the witness is sworn in can I indicate that there are a number of non-publication and pseudonym directions, so I will briefly deal with them if the Commission pleases.
COMMISSIONER SACKVILLE: Please do. Yes, thank you.
MS EASTMAN SC: The first order made on 22 November 2019 is a pseudonym direction that the witness be identified as AAF – sorry, her daughter be identified as AAF, and this witness be identified as AAG. And so the order is that in relation to the public hearing, a personal entity in column 1, which is the identity of the particular witness and her daughter, will remain in place unless she elects not to have the pseudonym in place. Then there are also orders in relation to non-publication of the names of a number of organisation and service providers. There are a number of service providers who have orders of this kind. The subject orders have been made on the 29th of November, the 2nd of December and a further one on the 2nd of December.
If the Commission pleases, I won’t read all of those out in detail. The witness and I have had a discussion and we think perhaps for ease and convenience, every service provider will be just described as service provider so that there’ll be nothing that will identify any one of the particular service providers who are otherwise identified in the statement. So I think the witness is ready to take her oath or affirmation.
COMMISSIONER SACKVILLE: I’m sure it’s been explained to you – you may take the oath or affirmation.
COMMISSIONER SACKVILLE: I understand you wish to take the oath.
<AAG, SWORN [2.04 pm]
<EXAMINATION BY MS EASTMAN SC
COMMISSIONER SACKVILLE: Thank you very much. Please do sit down and thank you very much for coming to give evidence before the Commission. Thank you. I will now ask Ms Eastman to ask you some questions.
MS EASTMAN SC: All right. Take a deep breath and take your time, and if at any stage you need to have a break, please let me know. So you have given your name to the Royal Commission but you understand for the purpose of today’s hearing that you’re going to be described as AAG.
MS EASTMAN SC: And I’ll call you Mrs G, if that’s convenient.
MS EASTMAN SC: And you’ve prepared a statement for the Royal Commission and you’ve got a copy with you.
MS EASTMAN SC: Have you had a chance to read through that statement today?
MS EASTMAN SC: And are the contents of the statement true and correct to the best of your knowledge and belief?
MS EASTMAN SC: Now, Commissioners, Mrs G and I have had a conversation today and she’s provided a very long and detailed statement. And she’s also provided to the Royal Commission today a supplementary statement. So what we have decided to do is rather than Mrs G reading the statement, hopefully we will have a conversation and that there are aspects of the statement that I will take Mrs G to, and she will tell you a little bit about her daughter. So I want to start, Mrs G, by telling us about your ‑ ‑ ‑
COMMISSIONER ATKINSON: Ms Eastman, you should know, Mrs G, we’ve all read your statement.
AAG: Yes. Yes. I understand that.
MS EASTMAN SC: Right. Mrs G, can I start with your daughter. So she’s presently 51.
MS EASTMAN SC: And she’s recently had a birthday.
MS EASTMAN SC: And she’s the light of your life, isn’t she?
AAG: She is.
MS EASTMAN SC: What would you like to tell the Royal Commission about your daughter; let’s get a sense of who she is, what she likes doing, and a little bit about how she lives.
AAG: My daughter is a much loved member of my family. She is a beautiful person. She has got the most gorgeous personality. She is the sort of person that when she bounds into a room, the room lights up. She was born with what was classified at the time as organic brain damage, and which resulted in intellectual disability. When she was in her 30s she was diagnosed with autism but she has some psychiatric mood disorders, etcetera. She has been a wonderful contributor to the community and I’m very proud of her doing this. She collected for the Royal Children’s Hospital for 15 years, and absolutely loved it.
She used to go to her day placement and be involved there and she loved that as well. But she didn’t ask to be born with the problems she’s got but as a result of what she’s been through in this system, she is a very damaged person.
MS EASTMAN SC: And you’ve been her advocate standing with her, her whole life, haven’t you?
AAG: Yes. Proudly.
MS EASTMAN SC: So you’ve come to the Royal Commission today to talk about your daughter but also to share with the Royal Commission some of your experience advocating on her behalf.
MS EASTMAN SC: So we might do it this way: let’s start with what your daughter’s present situation is. So this is something that you’ve set out in your statement on page 9.
MS EASTMAN SC: Paragraph 54, if that assists the Royal Commissioners. Your daughter now lives in a home on her own; is that right?
AAG: That’s correct.
MS EASTMAN SC: This is a home that you want her to stay in indefinitely; is that right?
AAG: Definitely. Yes.
MS EASTMAN SC: You’ve said in your statement that she’s looked after by the staff who in your opinion are good to her and who care for her.
MS EASTMAN SC: And this is a house that your daughter has lived in that has gone through a transition process from a government house to a now privatised house; is that right?
AAG: Yes. The Government privatised the house and the house my daughter lives in was moved over to a private provider on 26th of May.
MS EASTMAN SC: You’ve said in your statement that the house supervisor is now wonderful.
MS EASTMAN SC: And by far the best house supervisor who has worked with your daughter so far. Do you want to tell the Royal Commission why you’ve formed that view or what your experience is now?
AAG: Because she cares for my daughter. She makes sure the staff all are on the same page, that they deliver the care to her in the same manner. She’s got a wonderful sense of humour which works well with anybody working with my daughter because she’s also got a wonderful sense of humour, and humour diffuses any situation. If she’s getting escalated, humour will always defuse the situation. She’s an extremely caring house supervisor. She goes to the meetings we have with the – with the service provider and speaks in fond terms about my daughter, in positive terms about her instead of what was in the past she was always painted as a problem, this terrible problem. But this woman is totally the opposite and the staff working with my daughter at the moment are fantastic.
MS EASTMAN SC: And what’s been the change in terms of you and also your daughter in terms of how you feel about where your daughter lives?
AAG: I can’t tell you the difference between what I – I used to call boxing matches which were the – which were the meetings I used to have with DHS – in the comparison to going to the meetings with this organisation and to have them sit opposite me and to – to not only be helpful but to come up with some – some solutions to – to sort out some of the problems. It’s just wonderful.
MS EASTMAN SC: Right. So this is the good news at the present point in time.
AAG: Yes. Yes.
MS EASTMAN SC: But I suppose we need to go back now and just work through some of the history ‑ ‑ ‑
MS EASTMAN SC: ‑ ‑ ‑ and your daughter’s experience living in group homes for a number of years. So ‑ ‑ ‑
MS EASTMAN SC: ‑ ‑ ‑ can we do that.
MS EASTMAN SC: All right. In the statement that you’ve provided to the Royal Commission, you tell the Royal Commission that your daughter had to go into care when she was 13 years old.
MS EASTMAN SC: So that was a very traumatic time for the family.
AAG: Yes. Yes. It was.
MS EASTMAN SC: And so at that stage you weren’t sure about, well, what are the options available, and one of your friends told you about a particular service provider and they were opening up a facility in 1981 and your daughter moved into that new place; is that right?
AAG: Yes, that’s correct.
MS EASTMAN SC: And that institution, as you’ve described it in your statement, had about 14 people with disabilities living there.
MS EASTMAN SC: Now, were those – the other – can you remember whether the other residents who were living with your daughter at that time were also teenagers?
AAG: No, they all weren’t. One of them – the chap I remember quite clearly, he was – the first time he’d ever been away from home for more than a weekend and he was 45. So they weren’t all teenagers.
MS EASTMAN SC: So the 14 people were really a mix of age and gender; is that right?
AAG: Yes, they were.
MS EASTMAN SC: She lived at this place for about two years; is that right?
AAG: Two years. A little bit more than two years but roughly two years.
MS EASTMAN SC: You’ve told the Royal Commission in your statement that you didn’t think that there were enough staff at this particular place and that you didn’t think that they had sufficient training to deal with such a large number of residents?
AAG: No. Well, they didn’t. And – and, look, it – it was obvious that – that the people had very complex needs and there just wasn’t the staff to deal with the – the complexity of all the needs, behavioural and physical. So it just – it wasn’t the right place for my daughter.
MS EASTMAN SC: Right. Did she have any form of education or any formal education while she was at the institution?
AAG: Well, ever since she’s 16 up until last year she has always gone to a day placement during the day where they do activities, etcetera.
MS EASTMAN SC: But she hasn’t been to school at all in the sense that we know it.
AAG: No, she hasn’t – she hasn’t got the capability to do that.
MS EASTMAN SC: All right. So you’ve said in your statement that in 1984 when your daughter was 16 years old that you were able to move her to a smaller home, and that was a home that had five residents. And it was styled like a suburban house.
MS EASTMAN SC: You remember saying that.
MS EASTMAN SC: Your daughter lived at this particular place for about 12 years.
MS EASTMAN SC: So you’ve got some comments to make about her experience over that 12-year period. One of them, you say in the statement, is that the home had no proper supervision. So that’s paragraph 15 in your statement. So you were concerned that there would be a lack of supervisors and a lack of supervision in the home; is that right?
AAG: Yes, that’s correct.
MS EASTMAN SC: And you said sometimes that the residents felt that they were a little bit like in a prison in terms of the way in which the supervision operated.
AAG: Well, yes, it was an institutional attitude transferred to a suburban home. And it was run like an institution.
MS EASTMAN SC: Right. And when your daughter first started living at this home she was living there with three other female residents, but by the time she left, 12 years later, she was the only woman left living in the home.
MS EASTMAN SC: And you’ve described in your statement some incidents that have arisen of abuse between the residents.
AAG: Yes, yes.
MS EASTMAN SC: And this caused some distress to your daughter; is that right?
AAG: Yes, that’s right. Well, she ended up being the only female living there with two males, and she was basically getting belted around.
MS EASTMAN SC: Right. And there was a couple of incidents that you’ve put in your statement that caused concern in terms of the supervisors and the staff. And one of them, which I will just read in paragraph 17 of the statement, is that you say there was one particular incident that continues to cause your daughter life-long problems. One of the house supervisors at this home considered that she was overweight and she wanted your daughter to lose weight. So she put her on a diet which was not sanctioned by a doctor or monitored by management. Okay. And something happened. You came to see her ‑ ‑ ‑
MS EASTMAN SC: ‑ ‑ ‑ after she had been on this diet, and you noticed that she was bleeding.
MS EASTMAN SC: And you asked the staff how long she had been bleeding, and they said they didn’t know.
AAG: Not only didn’t they not know, I got the opinion that they didn’t care.
MS EASTMAN SC: Right. And you ended up taking her to a doctor. So ‑ ‑ ‑
AAG: I did. And she was in hospital the next day.
MS EASTMAN SC: All right. Can you tell the Royal Commission what ended up happening in relation to this incident?
AAG: She ended up having a rectal prolapse which – after she came back to the house after the first surgery, I tried to get them to take her off this – off the diet, and they refused to take her off the diet, and as a result, she had exactly the same surgery six weeks later which has left her with life-long problems.
MS EASTMAN SC: And it got to a point for you and your family that you wanted to move her from this particular home, that you had to go and contact your local Member of Parliament. Do you remember saying this in the statement ‑ ‑ ‑
AAG: Yes, I do.
MS EASTMAN SC: ‑ ‑ ‑ that you’ve provided to the Royal Commission?
MS EASTMAN SC: So you went to Parliament House to meet the relevant Minister.
MS EASTMAN SC: And, no doubt, you told the Minister what your concerns were. And shortly after that meeting, things were done which resulted in your daughter moving into a new home.
AAG: That’s correct.
MS EASTMAN SC: But – and so this is around 1996.
AAG: Yes, that’s right.
MS EASTMAN SC: But even that move was not great. Would that be a fair summary of what you’ve set out in the statement?
AAG: I would say it was out of the frying pan into the fire.
MS EASTMAN SC: Right. So part of that was that you had a sense that the residents and their families of the new home that she was going to had had a little bit of prior warning about your daughter, and so that she went into the new home where people had already formed an attitude about her and her behaviour; is that right?
AAG: Yes. And also about the process. There was some – there was some parents that weren’t – weren’t happy. They had – the organisation had their own waiting list, but my daughter had been on the waiting list with DHS as urgent for 11 years. So the – when the vacancy became available, DHS decided – they interviewed myself
and my daughter and another family and they – they gave my daughter priority, and she went into that room. My understanding was that there was a lot of controversy around it because the staff had been told or believed that the room which had an en suite had been built for them when that wasn’t the case at all.
MS EASTMAN SC: So it didn’t set off to a good start ‑ ‑ ‑
AAG: Oh, no.
MS EASTMAN SC: ‑ ‑ ‑ in terms of this home.
MS EASTMAN SC: And you’ve said to the Royal Commission that in this home, it became really apparent to you that the way in which your daughter was managed and the behavioural issues that arose because of her disability, you saw a real shift for your daughter. So her behaviour started to deteriorate ‑ ‑ ‑
MS EASTMAN SC: ‑ ‑ ‑ but the response to her behaviour and the management of her behaviour became more punitive over time.
MS EASTMAN SC: Have I summarised that statement part of your statement fairly?
AAG: Yes, that’s correct.
MS EASTMAN SC: And so things like your daughter, because of her motor skills, is not able to tie up her shoelaces. Is that right?
AAG: No. To this day, she still can’t tie them up.
MS EASTMAN SC: But if she didn’t have her shoelaces tied up, she might be punished for doing so.
MS EASTMAN SC: And you’ve said in your statement that there was a particular chart – a punishment chart that recorded where your daughter had not behaved pursuant to the rules or the requirements or a request, and then there was a documented punishment that would be imposed on her.
AAG: Yes, that’s correct.
MS EASTMAN SC: And this was something you didn’t know about ‑ ‑ ‑
MS EASTMAN SC: ‑ ‑ ‑ until you made a freedom of information application; is that right?
AAG: When I received the 300 pages from the Freedom of Information, I – I couldn’t believe what my daughter had been subjected to.
MS EASTMAN SC: So you had – so the information that you got through the Freedom of Information was copies of the punishment chart and some of the notes kept by the provider at the home. Is that right?
AAG: Yes, the staff notes.
MS EASTMAN SC: That was the documents. The staff notes. So you had a look through that, and I think you found that you were sort of shocked some of the day-to-day ways in which your daughter had been punished for things that really reflected her disability.
AAG: Well, she was punished for things that she had no – that she didn’t – didn’t even know she had done anything wrong. She was punished for her self-harm. She was punished over her incontinence. She was punished if she swore at somebody. She was punished if she didn’t abide by their rules, and the punishment was – well, it was – was what I consider aversive therapy.
MS EASTMAN SC: And you’ve said that some of the incidents might involve a threat to call the police about your daughter, and this has had a real impact on her over her whole life. Do you want to tell the Royal Commission what you’ve said there? And this, Royal Commissioners, is set out in paragraph 26 and 27 of the statement.
Threats to the police are something that my daughter has been subjected to ever since she’s been in care. This idea that staff can say to her, “If you don’t behave yourself, the police are going to be called”. My daughter is absolutely terrified of the police where the point where a couple of weeks ago the supervisor took her to McDonald’s, and she walked in, and there were three young police people sitting at the table enjoying their meal, and my daughter absolutely reeled, and the supervisor had to convince her she was okay and calm her down.
That’s the impact it’s had upon her.
MS EASTMAN SC: So this seems to suggest that your daughter has a real fear of being in trouble or being punished, and so she associates the police with something that might have a consequence for her. She might be in trouble.
AAG: My daughter lives her whole life in fear of being punished because she’s had so much of it.
MS EASTMAN SC: One of the other things that you say in the statement about her experience at this group home was that she had self-harming ‑ ‑ ‑
MS EASTMAN SC: ‑ ‑ ‑ and incontinence.
MS EASTMAN SC: And your view is this was part of the trauma that she was experiencing because of this cycle of punishment; is that right?
AAG: Oh, yes. Look, she couldn’t win. It was. It was. There was no way she could win because what would happen was the staff that was on first thing in the morning if my daughter didn’t behave, then there was – there was a consequence of that which might have meant she wasn’t allowed to have her meals with the other residents, etcetera. And it was a cumulative thing. When the next person came on duty, they added to that. Then the next person came on duty; they added to that.
So by the time she got to the end of the day, she was defeated. Then some of the things that they had put in place as a – as a reward system were taken away from her at the end of the week, and to top it off, at the end of the week, she was forced to take all the incident reports for the entire week to the management office where they lectured her on her behaviour and added any – any consequences that they wanted to put to the list.
MS EASTMAN SC: So you and your husband decided that you needed to do something about this home. And then I think you’ve made complaints to the Department and a complaint to the Human Rights Commission.
MS EASTMAN SC: But your daughter was eventually moved from this home and went to a new home in around 1998; is that right?
MS EASTMAN SC: And this time, the home had four residents.
MS EASTMAN SC: And when she first moved in, there were three other women residents at the home.
MS EASTMAN SC: Is that right?
MS EASTMAN SC: But you had the sense that even coming to this new home, your daughter was not going to get a fresh start because everybody knew about her before she came, and you make a comment about this in the statement that you provided ‑ ‑ ‑
MS EASTMAN SC: ‑ ‑ ‑ to the Royal Commission. All right.
AAG: But that has been the problem at every house she’s gone to that her reputation as a handful or problem resident precedes her. So when she moves to the house the staff that are in that house have a perception of – of what – what the person is like that’s coming.
MS EASTMAN SC: All right. Now, then there was another move.
MS EASTMAN SC: And that was in November 2000. And you say in your statement – Commissioners, this is paragraph 41 – that your daughter was getting to the stage that you considered moving her. And you agreed to her moving to a small house in a particular suburb that was originally built for victims of domestic violence.
MS EASTMAN SC: So at the time the house was run by DHS and it continued to be run by DHS until it was privatised this year. And the suggestion was that they would put your daughter there on her own for a little while just to see how she might go before they considered her residing with someone else. And you agreed to do that.
AAG: Yes, I did, but the trouble was she was so traumatised that in the beginning they couldn’t even get her to walk in the door.
MS EASTMAN SC: So was she fearful of moving into this new home?
AAG: My daughter is fearful of everything. She’s had so much abuse. I mean, she keeps saying, “I’m sorry. It’s not my fault. I’m not in trouble. I’ve been good so far”. Something simple like she might spill some water. She goes through this whole ritual because she’s so traumatised. So when she went to that house she was so traumatised from what she’d been through before that she couldn’t – she couldn’t adapt to the change and didn’t want to walk in the front door.
MS EASTMAN SC: Now, this is the house that she still lives in today.
AAG: Yes. Yes.
MS EASTMAN SC: So – and we’ve talked a little earlier that things are travelling well for her now.
MS EASTMAN SC: But just in the lead-up to the changes that have occurred for her this year, after she had been in the home for a short period of time, two other residents then joined the home, and these were two other women; is that right?
AAG: Yes. Yes.
MS EASTMAN SC: And one of them left shortly after. But, essentially, it was your daughter and one other person, and they lived together for 12 years.
AAG: Yes, that’s – that’s correct. But there was one other lady that was there from 2006 to, I think, 2012, if I remember the date accurately. So there wasn’t – there were – at one stage, there were three residents living there.
MS EASTMAN SC: Now, in terms of the – when your daughter was just living with one other person ‑ ‑ ‑
MS EASTMAN SC: And you deal with this in your statement.
MS EASTMAN SC: You say that they got on pretty well, but they had their moments, didn’t they?
AAG: Yes. Yes.
MS EASTMAN SC: And so you’ve said in your statement that the other resident had no mother, and her father only saw her every three months or so.
MS EASTMAN SC: And this woman didn’t want to move, but there was something that occurred where she was moved out of the home, and that had a real impact on your daughter. Do you want to tell the Royal Commission how that came about and what happened?
AAG: Well, the first time they tried to move her, I got wind of this because they kept – she had told my daughter that she was moving, and my daughter was very distressed. So I was pretty much on to the case. So I contacted the Public Advocate’s office. This is wrong. I went to the house and the young woman is saying to me, “I don’t want to move. I don’t want to move. They’re making me move. Such and such says if I don’t move, I will be in trouble”. And I thought this is wrong. So what I did was I went to the Public Advocate’s office and told them and basically rescued her.
So then the management came down and said, “Yes, everything’s going to be okay. She’s not going to be moved”. But what happened – I never for one moment thought that was the end of it, and what did happen was the next time my daughter kept saying to me that this – this young lass was going to move, and a casual was working, and I said to the casual one day about this girl being taken out to the house. She said to me, “Well, she’s going to be moved.”
So my daughter was – there was no transition done for her which was – which was part of the residential service practice manual that they – there was supposed to be a transition for the person leaving and the person staying. There was no transition. These two young women had lived together for 12 years. My daughter went out for afternoon tea and came home to discover this young woman that she’d been living with was gone.
MS EASTMAN SC: And what impact did that have on your daughter.
AAG: She was absolutely traumatised. She went through grief for weeks.
MS EASTMAN SC: Has she seen this young woman who lived with her again?
AAG: No. DHS banned her from seeing that person again. And when she went to a Christmas party and that young woman was present, my daughter was stopped from speaking to her to the point where my daughter was absolutely distressed, and I was so angered over it I put in a discrimination claim to DHS which was denied.
MS EASTMAN SC: Right. After this traumatic separation ‑ ‑ ‑
MS EASTMAN SC: ‑ ‑ ‑ things did settle down for your daughter. And you say in your statement – this is paragraph 49 – that it became obvious to you and the staff who knew her that she functioned better living on her own.
AAG: Yes, there’s no question about that. And the – and the – the medical reports back that up as well from the psychologist and also the psychiatrist. They have both said that she can’t live with other people, and – and for 34 years, she’s been forced to.
MS EASTMAN SC: Right. So the opportunity to live by herself has worked to really match her particular needs and circumstances. Is that your view?
AAG: Well, yes, it is – it is my view because if she can’t cope with living with other people, then what the end result of that is the other residents can’t cope with living with her. Her behaviour disintegrates. Then the staff who have not – have no training or insufficient training on how to deal with it, can’t cope with her. And some of them resort to punishment. So she cannot get away from this punishment cycle that she’s gone through in every house she’s ever lived in.
MS EASTMAN SC: And you’ve written a book about her experiences; is that right?
AAG: Yes, I have.
MS EASTMAN: So you’ve provided a lot of detail in your book about the journey that both you and she have had through what you describe, I think, as the system.
MS EASTMAN SC: All right. So I want to just now turn to your experiences fighting for your daughter. And can I ask you to have a look at paragraph 65 to 67 of your statement. It’s page 11. And you say, over the years you’ve tried hundreds of times to get your daughter better care in the disability housing system, and to keep her safe from abuse. You’ve been a strong advocate for your daughter but you say you have been verbally abused and treated horribly for it. It has been your experience that parents who are strong advocates are usually perceived by the management of DHS and group homes as “the enemy”. And you say you’ve never been able to protect your daughter or yourself from having your reputations denigrated.
So is this something that you want to say something to the Royal Commission about, because I know you’re here today to talk about your daughter’s experience, but you’ve been her strong advocate for many years. And you too have experienced some real difficulties along the way. Is there anything you want to tell the Royal Commission about that?
AAG: Well, I see it as another level of abuse, because what happens is when you have a family who are constantly going to DHS and saying, “These are the problems”, and they’re sitting there and they’re coming up with no solutions or telling you that nothing is going to change, then the only way you can achieve any change is by being persistent. We would go to meetings, as I said, which I
considered were boxing matches because DHS didn’t want to change anything, yet I was constantly being told how my daughter’s behaviour was upsetting the other residents, how they couldn’t get staff to work with her, how she was upsetting the staff, and how they were sick of me complaining.
But the word “help” never rolled out of their mouth once. There was no help for my daughter. There was no emotional help for her, there was no training for the staff, additional training for the staff. In the 19 years she’s lived there, there has only ever been four people trained in how to deal with anybody with autism and not one of them works there now. So it – it was just a continual problem of trying to get – to get something done, and I couldn’t understand how – I kept going to DHS and showing them and telling them what was going on, and they knew what was going on from what their staff was saying, yet nobody wanted to do anything. And I couldn’t understand why they couldn’t see that the cycle needed to be broken, and it didn’t get broken and – and the punishment just continued on.
MS EASTMAN SC: Do you think that there might now be a break in the cycle in terms of your daughter’s situation in the last few months?
AAG: The change is just – the change has – is just dramatic.
MS EASTMAN SC: Right.
AAG: I have never dealt – I had never dealt with people who are so cooperative, and who can see what’s going, who want to help, who are coming up with suggestions, who are supportive and who are treating my daughter and myself with respect which is something that I certainly didn’t get before from DHS.
MS EASTMAN SC: So I want to now take you to the last part of the statement. So this is page 11, paragraph 68. And when we spoke to you about preparing your statement, I think we might have asked you what you would like to see happen as a result of this Royal Commission. And I understand that there’s a lot that you might want to see happen. But can we just deal with a few of the issues that you’ve raised in your statement.
So the first is training of staff. So you say you believe that a higher mandatory level of qualifications for all staff working with people with disabilities is necessary, and all staff required – be required to complete regular ongoing training. So you’ve dealt with this in quite a lot of detail in your statement. So just to help the Royal Commissioners understand when you’re talking about training, what do you have in mind when you’ve described the need for mandatory training and ongoing training?
AAG: Well, my opinion is I don’t believe the Certificate IV, which is the basic training level that people come into work with people with disabilities, I believe it’s not worth the paper it’s printed on. I think you cannot put people who have got insufficient training in to – to care for people with complex needs like my daughter
has got, without there being problems. I think there needs to be a higher mandatory level of training for people to get into – into the disability system.
And I also believe that there should be ongoing training, because one of the problems is the staff person that you train may not stay in that house to work with your daughter. They may end up working at another house which means along comes another person who hasn’t got that training who then has to start off, and the circle and cycle continues on.
MS EASTMAN SC: You’ve also said in paragraph 71 of your statement that you think that there should be a national register of all staff working in the disability sector.
MS EASTMAN SC: And so why have you formed the view about the need for a national register?
AAG: Because I – my belief is that when people are found to – when allegations are made and they’re found to be true, the best outcome as a parent I could ever get was to have that person moved to another house – that staff person moved to another house. But some of the people working in the disability system have been found at various houses they’ve worked at – the allegations against them that have been found to be true. Now, what happens to them is they then move on to another house and they perpetrate the same things on the people at the next house. I believe there should be a national register of all disability workers where if there are problems that those – those people are identified and flagged, and I think it should be national – not just state-wide – because that will stop them from going from state to state. I think it’s a major thing.
MS EASTMAN SC: You’ve also talked about having greater powers for the regulators.
MS EASTMAN SC: You’ve said in paragraph 75, from your own experience, the only place that your daughter has ever received any justice is in the legal system.
MS EASTMAN SC: But you think parents should not have to resort to taking action through the legal system. And you say you that would like the powers of the Disability Services Commissioner, the Office of Public Advocate to be able to conduct investigations and you raise an issue about the adequacy of them. Perhaps if you could just elaborate on that a little bit in terms of what your concerns are around the way regulators have dealt with issues that you’ve raised and why you say legal action is not something that should be pursued?
AAG: My experience has been that wherever I have gone – and I could run through the list of some of the places I have been to over the years – the Human Rights Commission, the Federal Court – I had to defend my daughter against a stalking allegation which was used to get her out of one house, the Disability Commissioner; I’ve been to them twice. I’ve been to the Police. I’ve been to the Ombudsman. I’ve been to the Minister. And the best outcome that I can ever get is – you will get a report that comes back and says some – not everything has been found – “the allegations you’ve made have been found to be correct”, and I understand that because it’s difficult to – to sometimes get the right evidence.
But that the – the best result that I could ever get was that some of the allegations were found to be true, but what would happen was at the end of it they’d all just say, “Oh, well.” And they’d move on, and my daughter is damaged by all this at the end of it. Yet nobody wants to do anything about it! They come up with these reports that nothing – nothing is implemented from the report. Her life goes on. My battle to try and help her goes on, and nothing is achieved.
MS EASTMAN SC: So you want to have not only a sense of justice for your daughter but that she’s provided with the support and assistance when allegations are proven to be established or substantiated; is that right?
AAG: Yes, that’s true because what tends to happen is she – she gets scared, she’s too scared sometimes to – to say what’s happened to her. If I raise it with the DHS what they used to do was they used to go to the person or they’d say to the person, “There has been an allegation against you; did you do this?” Of course they said no. But that was the end of it. There was never any further investigation. Other staff working in the house were never asked if they were aware of anything that had happened. So they’ve basically got away with it. The only time anything happened was when my daughter would tell me and then I would start dancing up and down and making complaints, and the best outcome I could get would be to get that person moved on.
MS EASTMAN SC: And you’ve talked in your statement about the barriers to reporting incidents and the need for more accountability. That’s paragraph 76 and 77.
MS EASTMAN SC: The final thing I want to ask you is what you say in the conclusion. And I wonder whether you could read that paragraph to the Royal Commission, please.
AAG: Which paragraph?
MS EASTMAN SC: Paragraph 80, the final paragraph under the heading Conclusion.
I don’t believe my daughter will ever be completely safe in her own home. While she has found some periods of respite, I have not had much respite at all. I am fighting a lifelong battle for her but I will keep fighting because I want to know when I’m gone I have done everything I can do to hopefully leave her in a better place.
MS EASTMAN SC: Mrs G, thank you for your evidence today. Commissioners, I have no further question unless any of the Royal Commissioners have any questions. As you’ve said, you’ve read the statement in detail and we’ve just had a discussion about aspects but not the entirety of the statement today.
COMMISSIONER SACKVILLE: I know this has been very difficult for you to give evidence. Would you mind if I asked you a couple of questions?
AAG: No, I’d be happy to.
COMMISSIONER SACKVILLE: Could you just tell us how it is that your daughter is now living by herself; what were the circumstances that led to that?
AAG: Well, what happened was I – I never wanted the young woman to be moved out from living with my daughter. I thought that they – between the two of them they had sorted things out pretty well. But what happened was there was a new supervisor came in and she decided that the way to deal with my daughter was to isolate her from this young woman. And in the end I think the plan was for – from DHS to move the young woman anyway. So when the young woman finally moved and my daughter finally recovered from the trauma of it all, it became pretty obvious to me that – that – that she was better off living on her own. So then the battle started to get the – get the okay for her to live on her own. So it took a long time, but we went through the Disability Commissioner process and one of the agreements made through the final – the final hearing we had with the Disability Commissioners was that they would agree to my daughter living on her own.
So it took me a long time to get the piece of paper. I didn’t get that – verify that until three days before DHS handed over to the private organisation because I kept getting told there wasn’t a piece of paper when I knew jolly well there was. So she’s now there on her own. It’s a tiny house. Her bedroom is so small that when she sits on her bed and puts her feet out her feet touch the wall opposite. And I hopefully am going to get that problem solved through the NDIA system. But she can’t live with other people and – and now we have a report that was done in October, a very comprehensive report on her from a psychologist, and they have agreed with the psychiatrist that she cannot live with other people now or in the foreseeable future. I don’t believe she will ever be able to live with other people.
COMMISSIONER SACKVILLE: And just one more thing. You’ve described how much better it is for your daughter with the people who care for her so well.
COMMISSIONER SACKVILLE: How did they come to be involved with your daughter; was that your choice or someone else’s choice?
AAG: Well, no, there was no choice. When the Government privatised the homes they handed them – the – the homes were allocated to different service providers in Victoria, and that was the house that she ended up with.
COMMISSIONER SACKVILLE: I see. Thank you very much.
AAG: No. Thank you. You’re welcome.
COMMISSIONER SACKVILLE: And thank you very much – thank you very much for coming and giving your evidence to us.
AAG: Can I just make one other point, if that’s possible?
COMMISSIONER SACKVILLE: Of course. Of course.
AAG: I think one of the major problems with the disability system is the use of casual staff. In my daughter’s case in the house she lives in from 2014 to 2019 there had been 1340 shifts worked by casuals. Now, this is a young woman with autism. She struggles with her boundaries being blurred, etcetera. And just to give you an example of the flow of the number of people, in September 2016 there were 49 shifts – there’s two shifts a day – there were 49 shifts worked by casual staff. 46 of those were agency and only three were DHS. Yet this was a DHS house where DHS were supposedly providing a duty of care to my daughter, yet all these agency staff turning up that they didn’t even know who they were.
So I think one of the major things that is wrong with the disability system is the casualisation of staff. I think it is just – just a recipe for disaster. And I think that’s one thing that I probably omitted ‑ ‑ ‑
MS EASTMAN: That’s okay.
AAG: Forget to put on the end of – end of my statement.
COMMISSIONER SACKVILLE: Thank you very much. Thank you for your evidence.
AAG: No, thank you.
MS EASTMAN: If the Commission pleases, that’s Mrs G’s evidence.
COMMISSIONER SACKVILLE: Thank you, Mrs G.
<THE WITNESS WITHDREW [2.45 pm]
MS EASTMAN SC: There are a number of service providers and the department who were referred to in the statement and in the course of giving evidence. And I understand the opportunity for each of the service providers and the department to make submissions, that will be available to them in due course.
COMMISSIONER SACKVILLE: Thank you.
MS EASTMAN SC: All right. We might just need a very tiny moment just to make arrangements for our final witness today.
COMMISSIONER SACKVILLE: Shall we adjourn for a very tiny moment, or shall we just sit here.
MS EASTMAN SC: Yes, please. Thank you.
COMMISSIONER SACKVILLE: We’ll adjourn for a tiny moment.
ADJOURNED [2.45 pm]
RESUMED [2.52 pm]
MS EASTMAN SC: If the Commission pleases, I’m handing over to Mr Harding again.
COMMISSIONER SACKVILLE: Yes.
MR HARDING SC: Thank you, Commissioners. The next ‑ ‑ ‑
COMMISSIONER SACKVILLE: Mr Harding. Yes.
MR HARDING SC: Yes. Our next witness is Jane Rosengrave.
COMMISSIONER SACKVILLE: Yes. Ms Rosengrave, we will get you to take the oath or affirmation as you wish.
<JANE ROSENGRAVE, AFFIRMED [2.52 pm]
<EXAMINATION BY MR HARDING SC
COMMISSIONER SACKVILLE: Thank you very much. Please sit down. Thank you. And thank you very much for coming today to give evidence to the Royal Commission.
MS ROSENGRAVE: Yes.
COMMISSIONER SACKVILLE: I will now ask Mr Harding to ask you some questions.
MR HARDING SC: Thank you, Chair. Ms Rosengrave’s statement is tab 39 of the ‑ ‑ ‑
COMMISSIONER SACKVILLE: Thank you.
MR HARDING SC: ‑ ‑ ‑ tender bundle. Is your name Jane Rosengrave?
MS ROSENGRAVE: Yes, Jane Rosengrave, yes.
MR HARDING SC: And you have someone with you.
MS ROSENGRAVE: Yes, I have Pam with me supporting me.
MR HARDING SC: Okay. You made a statement for the Commission.
MS ROSENGRAVE: I did make a statement for the committee – not committee.
COMMISSIONER SACKVILLE: Commission.
MS ROSENGRAVE: Commission, sorry.
MR HARDING SC: And you want to read that statement, do you?
MS ROSENGRAVE: Yes, I do.
MR HARDING SC: Okay. Perhaps if you do that.
MS ROSENGRAVE: Okay.
The views I’ve experienced – expressed in this statement are based on my personal experience. I am a person with an intellectual disability. I currently live in a unit on my own in Melbourne which is run by Wintringham and I have been there for six years. The staff help me go to the doctors because they’ve been speaking jargon and all that. They even help me go to appointments and all that as well. Yes. And I – since I have lived in the city in the flat I am free as a bird, I am, and that’s the way it’s going to be for the rest of my life.
I am an Indigenous woman which I’m so proud of, and my tribe is Yorta Yorta from Shepparton, and that, and I do painting, crocheting, watching the footy, cricket.
COMMISSIONER SACKVILLE: Which football team do you support?
MS ROSENGRAVE: I go for the Magpies. What team do you go for?
COMMISSIONER SACKVILLE: I barrack for the Swans, and I have for 71 years.
MS ROSENGRAVE: Really? Sorry.
COMMISSIONER SACKVILLE: And I’ve never liked Collingwood.
MS ROSENGRAVE: Well, we used to have the Collingwood football players coming to Pleasant Creek.
COMMISSIONER SACKVILLE: I think Mr Harding probably wants you to go back to the statement.
MS ROSENGRAVE: I know. You shouldn’t have started it.
I’m a strong self-advocacy person that helps other people have a voice to be heard and stand up for their rights and to give their evidence to the Royal Commission and to be a strong self-advocacy.
MR HARDING SC: Yes.
MS ROSENGRAVE: People with an intellectual disability – do you want me to read that bit or just this?
I am on the board for people with a disability for the First Peoples Disability Network that’s in Sydney. I’ve been on their board for about four years now and I’m even on the committee of Reinforce which is run by people with an intellectual disability which is a self-advocacy organisation that’s in Ross House. And there’s another one that’s called STAR which has been going for a long time as well. And that’s for people with an intellectual disability that have got children and that and even adults as well. And then I’m in another one called AMIDA which is Action for More Independence and Dignity Accommodation for the housing for people with a disability. And I’m even a member of the Women with a Disability in Bourke Street.
I’ve lived in Pleasant Creek from 1968 until when I was 21. So I was five when I went to Pleasant Creek and I was in the institution for – it was an institution in those days for people with an intellectual disability, it was. And when I was 16 I moved out into a CRU, into a hostel, sorry, but it was on the grounds, it was, because it was from the wards to the hostel. And that’s when we learned
how to ride the bikes, how to look after ourselves in the room and do our own washing. When we done our shopping, the – the staff wrote the note that they came up with us to make sure we got the right things for the cooking.
And when I was 17 I moved out into the CRU which was run by Pleasant Creek staff but there was two CRUs, the first one was in – it was out in the community but it was – it was a big huge house and it was run by staff and us. We had to live in it for two or three years. Then after that we all had to be taken back to Pleasant Creek and I used to go back there sometimes for problems like epileptic fits or if I was dobbed in for not doing my job properly, and that, and the staff would make me stay down at senior girls for about two months. And that when there was no privacy because it was a very big ward. And there was some staff watching us getting undressed, having a shower, watch – you know, cleaning our teeth, you know, polishing the floors and all that.
And then I – I went over to the work education centre as well which was connected to Pleasant Creek. It was a garden centre and it was like – there was a school there and we never got paid for selling vegetables and going around institutions selling the vegetables. The money all went back to the work education centre. Then after that that’s when we –
I’m not going too fast, am I?
MR HARDING SC: No. No.
COMMISSIONER SACKVILLE: No, you’re going at just the right pace.
MS ROSENGRAVE: Okay. Sorry. When I was living in the CRU I recently – yes, I was feeling like our rights weren’t there, our rights were taken away, and they were like little mini-institutions; they were.
MR HARDING SC: Did you have a choice about whether you were going to go to the CRU or stay in the institution?
MS ROSENGRAVE: We never had a choice at all. The staff were the ones with the thinking caps for us.
MR HARDING SC: Right.
MS ROSENGRAVE: Because they thought we were stupid, you know what I mean? Yes.
MR HARDING SC: Yes.
MS ROSENGRAVE: In those days.
MR HARDING SC: How big was the CRU? How many rooms in the CRU?
MS ROSENGRAVE: The first CRU there was about – I think there was about six or seven rooms there was. It was a massive house. A very big house. And there was about four boys and three girls in the CRU and each morning the staff used to come up and say – knock on the doors and say, “Everybody up ready for your breakfast and making the bed!” And then we had to get on our bikes and ride back down to Pleasant Creek to the work education centre and stay there and do the nurse – you know, the what is it called – the garden, the school, the cooking.
MR HARDING SC: Yes.
MS ROSENGRAVE: All that.
MR HARDING SC: Are CRUs a bit like group homes?
MS ROSENGRAVE: Well, I see that they’re like little mini institutions.
MR HARDING SC: Yes.
MS ROSENGRAVE: They are CRUs but they’re like mini institutions to me because I’ve been brought up in a big one. Okay. I’m so used to CRUs. We had weekly rosters which located jobs around the house which – what they – the staff used to do is come up to the CRU and they used to say, “Have you done your jobs like, Bruce?” Or “Have you done your job, Danny?” And if we said, “No, we haven’t,” we had to stay back and do them until we’d done them.
MR HARDING SC: Did you get any choice about what jobs you were going to do?
MS ROSENGRAVE: No. The staff used to write them down, and we had to do them.
MR HARDING SC: Okay.
MS ROSENGRAVE: And then we’d go down to the work education centre in the institution.
MR HARDING SC: Yes.
MS ROSENGRAVE: Yes. The – no medical treatment as well because, see, there was just one doctor. And it was at the institution, it was. And if we – if I used to have fits, which I had a lot of fits in those days, I can remember I had a fit in the bath and I got dobbed in by one of the residents and then I had to go back down to the institution and go to the ward, not the hostel, back to the ward, and I stayed there for two months which was for my punishment. And that was because I had a fit in the bath, it was.
MR HARDING SC: What was wrong with having a fit in the bath? What did they think ‑ ‑ ‑
MS ROSENGRAVE: Well, because – I know now but I didn’t know then that when you have a bath in hot water, it goes to your brain where the fits are coming from, and it can bring on a fit, it can, from the heat.
MR HARDING SC: How did the staff see the fit?
MS ROSENGRAVE: It was two – no, it wasn’t the staff. It was two clients in the CRU.
MR HARDING SC: Okay.
MS ROSENGRAVE: That was there when I was there but they – one of the – one of the clients rode their bike back down to the hostel, dobbed me in. The staff had to come up to the CRU and told me to go back down to Pleasant Creek and go to the ward, senior girls ward, and I stayed there for two months for my punishment.
MR HARDING SC: Why did you get punished for having a fit?
MS ROSENGRAVE: Well, the reason why because the staff thought that was the wrong thing that we were doing in those days, you know, like the fits you couldn’t help.
MR HARDING SC: Yes.
MS ROSENGRAVE: You know, they just came on. Usually at night-time I would have my fits but sometimes in the day time I would have them too which I can remember I had – did have a fit in the day time but it was in one of the streets and one of the workers who knew me had to take me back to that CRU and then that’s when I had to again go back to Pleasant Creek again, and go to the senior girls again for having a fit.
MR HARDING SC: Right. Okay.
MS ROSENGRAVE: Yes. That’s what they did. They thought it was bad and they thought in those days, you know, yes. Now, which one are we up to.
MR HARDING SC: I think you’re up to paragraph 20.
MS ROSENGRAVE: Up to 20.
When I was living in the CRU I felt –
what’s that word –
socially isolated when we were abused in the street by people from the local community who used to call us nicknames, and that when we were in the streets – like – it’s like when we used to go for our walks in the institution. And if
there’s people on the outside called us like mental case, spastic, retarded. And if we said that back to them we would get into trouble. It was like living in the CRU, the same thing that we would get into trouble for it. Yes. In the CRU, we –
…we were frightened of being punished by the staff. The staff would also encourage residents to dob each other in which that did happen because the staff knew that – like the staff used to say to some of the clients if anything’s going on when we aren’t there, come down and tell us. And that’s what they did.
MR HARDING SC: Right.
MS ROSENGRAVE: Without, you know, us knowing, yes.
MR HARDING SC: Yes.
MS ROSENGRAVE: I discussed –
In the hostel I reported some –
yes, that’s right:
When I was in the hostel I can remember I was in a room and I had the curtain closed but the thing is I heard a knock on the window, and that’s when I opened it and I knew there was a boy there.
That’s when I – you know what I mean, I told the staff and they wouldn’t believe me, they wouldn’t. Are we up to here? Yes. When I was in a – this part – what – yes:
I used to go to church a lot, too, when I was in the hostel. But the thing is when I was in the hostel and it happened actually when I was in senior girls, that one of the bus – yes, just the bus driver.
MR HARDING SC: Yes.
MS ROSENGRAVE: Yes. The bus driver used to get sex out of me when I was 16 to 18 – 16, 17 to 18. And that’s when he asked me to work at the milk bar as well.
MR HARDING SC: Is this the bus driver that took you to church?
MS ROSENGRAVE: Yes. From the institution.
MR HARDING SC: Okay.
MS ROSENGRAVE: Yes. That’s the other thing. When we were in the church we were always kept four rows – four seats separate from the community because we were all like a bunch of sheep, up in one corner of the church sitting in church we were, yes. And there was the outside people but four seats back.
MR HARDING SC: Yes.
MS ROSENGRAVE: So there was four seats vacant.
MR HARDING SC: Between you and the other people.
MS ROSENGRAVE: Yes. The man that continued to abuse me for three years, the abuse is still – it still affects me like today and it will for the rest of my life, it will, because when I’m talking about it I’m picturing it, I am. And I’ve even done an ABC Lateline story on my life.
MR HARDING SC: Yes.
MS ROSENGRAVE: From Lateline as well:
There were also some good things about being in the hostel of the CRU. At the time I – we prepared meals for firefighters which was in the newspaper Stawell Times. And it was over in Terang, I can remember. And Mr – one of the staff – two of the staff came with us. And there was seven of us and we cooked the meals with the staff with us for the firefighters in those days.
MR HARDING SC: Yes.
MS ROSENGRAVE: Which was good, yes.
MR HARDING SC: You liked that part of it.
MS ROSENGRAVE: I did, yes, because it was way out of Pleasant Creek, way out, you know, yes. Right away from it. Yes:
In some way, CRUs were more forward thinking than some present-day good homes. For example, in the CRU there was weekly meetings which we had but it was like once a week, and it was probably on a Friday or that. And the staff would say, “Right, have you done your roster this week?” You know, we had to give them what we had to do. And if we didn’t do them they will say, “Right, you’re going to do that next week. The same thing, you are.” And we had to do it again for the next week because we didn’t do it right.
Yes, we got to choose what our menus were definitely, but, you know – yes:
I hope that this Royal Commission can help people with a disability to have choice and control over their – over where – and they – who they live with to
get the disability – to get the support that they need to do this. People with disability should have a choice about what they said – spend their money on, what holidays they go on, which they should have a choice about that and their money as well, not to be treated like those olden days.
MR HARDING SC: Yes.
MS ROSENGRAVE: As well:
And they also deserve choice about their sexual relationships and have the ability to know – to know to speak up about their rights. People with a disability should have privacy and the ability to have their own room decorated by them with support. So they should have their own room, they should have their own colours in the room, what they want. And if they’ve got a boyfriend, they’re allowed to see their boyfriend and all this, or if they are the opposite, you know, and all this, they should feel free.
MR HARDING SC: Well, that takes us back to the beginning, doesn’t it, because you’ve got free as a bird on the front of your shirt there. Can you tell the Commission what it’s like to be free as a bird now compared with what it was like in the institution?
MS ROSENGRAVE: Yes. Well, to be free as a bird – because I’ve been through domestic violence as well, I have, and I’ve left my partner. And ever since I’ve left my partner, I’ve felt more freedom. My health has been a lot better. I didn’t – don’t need to hold things in, I don’t now, and, yes, I can speak up for myself. I’m a fighter, I am, and I’m with the First Peoples Disability and I teach other people that they have got a voice to be heard, they have, not to be ignored.
MR HARDING SC: And were you heard when you were at the institution, do you think?
MS ROSENGRAVE: No. We were just ignored. We were treated like a bunch of sheep from one paddock to another paddock. And I’m – I’m talking about the wards, girls wards, from one paddock, senior girls ward to another paddock, the hostel to another paddock.
MR HARDING SC: Yes.
MS ROSENGRAVE: Yes.
MR HARDING SC: Thank you very much.
MS ROSENGRAVE: Yes. Are we finished or not? I don’t know.
MR HARDING SC: I’ve finished asking you questions unless the Commission have some questions they’d like to ask you.
COMMISSIONER SACKVILLE: Well, Mr Harding has finished but I will just work out whether we’ve finished.
COMMISSIONER ATKINSON: Can I ask you a question? You’re obviously a person who is very strong.
MS ROSENGRAVE: Yes.
COMMISSIONER ATKINSON: And you say what you think.
MS ROSENGRAVE: That’s right.
COMMISSIONER ATKINSON: And you mean what you say.
MS ROSENGRAVE: That’s right. Because I’ve been brought up very hard.
COMMISSIONER ATKINSON: So how did you get the strength to be the person you are now?
MS ROSENGRAVE: Well, I had a brain surgery in 2004. And I used to have fits before that. And before that I was not as strong as what I am. But since I had the brain surgery – my partner didn’t like it but I was going to Melbourne a lot more, and I really didn’t need him. You know. And that’s when the – that’s when he noticed that there was a big difference in me.
COMMISSIONER ATKINSON: Good.
MS ROSENGRAVE: And what happened – the domestic violence was still going but I gave him three choices – three chances, and was that third chance when he head-locked me, slapped me across the face, kept me in hostage in the community in the community house all night. I had to work out what I did wrong. And I had to work out how I meant it – I’m saying sorry to him by crying.
And then even when I was in the – in the CRU – not CRU, in the community house all night because he kept me there, I said to him, “I’m going to leave you.” And he said, “If you’re going to leave me, I will kill you.” And that’s – you know. And that’s when there was police involved as well. And that’s when the next day I said to him, “I will see you tonight, darling.” And then instead of me seeing him tonight, I went to Melbourne and I stayed in Melbourne. And I never came home again but I was worried about my stuff because of the institutional days.
COMMISSIONER ATKINSON: You did well. You did well.
MS ROSENGRAVE: Thank you, darl. Can I quickly say that I am as free as a bird!
COMMISSIONER ATKINSON: Thank you.
COMMISSIONER SACKVILLE: Thank you very much. We know that you’ve contributed to the Commission in a number of ways because you’ve been at a couple of the workshops.
MS ROSENGRAVE: That’s right.
COMMISSIONER SACKVILLE: And you explained at the workshops that you’re free as a bird and you’ve done that again today. So thank you very much for coming and telling us about your history. It’s been a very great experience for us. Thank you.
MS ROSENGRAVE: Thank you for that.
COMMISSIONER SACKVILLE: Thank you.
<THE WITNESS WITHDREW [3.16 pm]
MS EASTMAN SC: Commissioner, that completes the evidence for today, and I understand that we will resume tomorrow morning at 10 am.
COMMISSIONER SACKVILLE: Tomorrow morning we will resume at 10 but we’re going to break at least between 1.00 and 2.30 because there are awards tomorrow for the International Day of People with Disability, so there may be people here who otherwise would view what’s going on who would want to watch those proceedings, so we will make sure that we’re adjourned for the time so people can watch if they want to the awards for the day tomorrow.
MS EASTMAN SC: If the Commission please. Thank you.
COMMISSIONER SACKVILLE: Thank you very much again. We will now adjourn until 10 o’clock tomorrow. Thank you.
MATTER ADJOURNED at 3.16 pm UNTIL TUESDAY, 3 DECEMBER 2019