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Public hearing 32 - Service providers revisited - Day 1

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CHAIR: Good morning, everyone. I welcome everyone who is attending this Public hearing which is being held in the Brisbane hearing room of the Royal Commission. I welcome also all those who are or will be following the proceedings through the livestream. This is the 32nd Public hearing of the Royal Commission, and the subject of this Public hearing is Service Providers Revisited. 

This will be the last of the lengthy Public hearings of the Royal Commission, by which I mean it will be the last that will occupy five days or more of hearing time. The present plan, subject to the vagaries of chance that have affected the Royal Commission more or less throughout its life of three years and 10 months, is to hold one shorter hearing later in the year concentrating on a particular case study. There will also be a ceremonial final hearing on a date to be announced. 

We commence the hearing with an Acknowledgment of Country. We acknowledge the Jagera people and the Turrbal people as the Traditional Custodians of Meanjin, Brisbane, the land on which we are gathered for this hearing. We pay our respects to their Elders past, present and emerging. We also wish to acknowledge First Nations people who are participating in this hearing, including those who are following the hearing either in person or via the livestream. 

As you will know, today marks the 15th anniversary of the National Apology to the Stolen Generation. Commissioner Mason is not participating in this hearing, but she has prepared a note on the importance of this milestone for First Nations people. Commissioner Mason says the following: 

The name Peter Read may not be familiar to you, but Peter has a significant place in the story of the National Apology. Peter Read was born in Sydney in 1945. He went to university and left with qualifications to enter the teaching profession. During his career, Peter considered it important to go out on Country and meet the people in the record of Aboriginal history he was writing about, including in education in regional and remote places. 

Accounts about his life say that he has been using oral sources since 1977. Peter himself said, "I always carry a tape recorder because we just don't know what's going on in a community until you talk to the people.” He was the first historian to use the term "Stolen Generations.” In 1980, Peter Read, a non indigenous teacher and researcher, and Coral Oomera Edwards, an Aboriginal woman who was removed from her family at the age of five, founded Link Up, an organisation which seeks to reunite Aboriginal people who have been separated from their families by state wardship and adoption. 

Peter's work in collecting stories is powerful in the light of the work of the Royal Commission because it is what we have been doing. We have recorded and captured stories across submissions, private sessions, Public hearings, issues papers, engagement and research that tell of the experiences of violence to and abuse, neglect and exploitation of people with disability. Importantly, we have captured words that speak of the change that people wish to see made by governments and embraced by the Australian community. 

Commissioner Mason continues: 

As you read the speech delivered by the then Prime Minister, Mr Kevin Rudd, in 2008, please reflect on the thousands of stories from Aboriginal people that were captured before the day by Aboriginal and non indigenous people. Reflect on members of the Stolen Generation to whom the words were spoken and reflect that it brought for many, but not all, healing and relief. And reflect on the fact that children with disability, including First Nations children, continue to be removed from their families and that, as a nation, we know we have to do better for our children. 

That ends the material that was prepared by Commissioner Mason. In this hearing, I am joined in the Brisbane hearing room by Commissioner Barbara Bennett PSM and Commissioner Alastair McEwin AM. Counsel Assisting the Royal Commission at the hearing is Ms Kate Eastman AM SC, who appears with Ms Cathy Dowsett. They are assisted by Ms Lisa Doust and Ms Kate Beattie, both of counsel. I shall shortly take appearances, of which there are likely to be quite a few over of the course of this hearing. 

The title of this Public hearing, Service Providers Revisited, reflects the fact that the Royal Commission has conducted a number of hearings examining the conduct and practices of particular service providers. These include a number, and I will identify some of them. 

Public hearing 13 was conducted at Homebush in New South Wales from 24 to 28 May 2021, with a day of oral submissions being held on 10 September 2021. That hearing examined the experiences of a group of people living in disability residential accommodation in Western Sydney provided by Sunnyfield Disability Services. 

Public hearing 14 was held in Adelaide from 7 to 11 June 2021, with oral submissions being presented on 30 September 2021. Among other issues, Public hearing 14 examined the experiences of two people with disability who received disability accommodation services through the South Australian Department of Human Services. 

Because of the COVID 19 restrictions, Public hearing 20 was conducted virtually from 7 to 14 December 2021. It examined the experiences of two groups of people with disability living in supported accommodation provided by a large service provider, Life Without Barriers, LWB. One group lived in houses in Lismore in northern New South Wales; the second group lived in a house in Melbourne. 

Public hearing 21 was conducted virtually from 23 to 25 February 2022. That hearing examined the experiences of people with disability engaging with Disability Employment Services, DES, a Commonwealth program which aims to support people with disability to find and retain employment. The hearing examined the practices of AimBig Employment, a DES provider, and the experiences of people with disability who participated in AimBig's program. 

Public hearing 23 was held in Sydney from 16 to 20 May 2022. That hearing focused on services received by people with disability from the Australian Foundation for Disability, commonly known as Afford, between the years 2014 and 2021. In particular, Public hearing 23 examined the experiences of three young people with disability who participated in an Afford day program conducted in Mount Druitt, New South Wales. 

It is perhaps not as widely known as it ought to be, but Commissioners participating in the various Public hearings to date have published a total of 11 Commissioners' Reports, many of which contain factual findings and recommendations, as well as identifying areas for further investigation by the Royal Commission. Most of these reports have not been presented to the Governor General or tabled in Parliament, therefore the findings and recommendations do not have the same status as reports presented to the Governor General. Nevertheless, the findings and recommendations in those reports are very significant. 

As many will know, two of the published Commissioners' Reports were in fact presented to the Governor General and tabled in Parliament. They contain formal finding and recommendations arising out of the Australian Government's response to the COVID 19 pandemic and the vaccination program that was implemented to address the pandemic. These Commissioners' Reports arose out of Public hearings 5 and 12 conducted, respectively, from 18 to 21 August 2020 and on 17 May 2021. The then Australian Government announced in its response to those reports that it accepted all but one of the recommendations that were made. 

Commissioners' Reports for Public hearings 13, 14 and 21, that is, the reports involving Sunnyfield, the South Australian Department of Human Services and AimBig, respectively, have been published. A Commissioners' Report for Public hearing 20 has been drafted and a copy has been provided to LWB, but that report has not yet been published. Similarly, a Commissioners' Report for Public hearing 23 has been drafted and a copy provided to Afford, but that report also has yet to be published. Both, however, will be published as soon as practicable, making a total of 13 Commissioners' Reports to be published in all. Commissioners' Reports on service provider hearings, as I have indicated, generally contain factual findings and make recommendation. 

In addition to the hearings that I have mentioned, Public hearing 3, held as long ago as December 2019, heard evidence concerning the responses of Yooralla, a provider of group homes, to multiple serious sexual assaults perpetrated by a staff member on residents between 2011 and 2015. The Commissioners' Report for Public hearing 3 has also been published, but it does not make factual findings about Yooralla's responses to the sexual assaults. But the report noted that the evidence raised some policy questions, including some questions about Yooralla's responses after the sexual assaults came to its attention. 

The forensic hearings to which I have just referred, those hearings which examine the conduct and practices of service providers, were designed to achieve two principal purposes. The first was to hear from people with disability or, in some cases, their families and supporters about their experiences of violence, abuse and neglect in accommodation or programs provided or conducted by particular service providers. Their evidence, coupled with other evidence, such as the statements or oral evidence made on behalf of service providers themselves, and by regulators, enabled Commissioners to make factual findings about failings in the systems and practices of particular service providers. 

The second objective of the forensic hearings went beyond investigating the acts or omissions of individual service providers or regulators. The case studies were intended to explore the systems, practices and policies of government and non government service providers, as well as of regulators such as the NDIS Quality and Safeguards Commission, as those policies and practices affected the health, wellbeing and human rights of NDIS participants and other people with high support needs. The Public hearings and the Commissioners' Reports identified apparent systemic failings which warranted further consideration by the Royal Commission and, in due course, the making of recommendations designed to correct those failings. 

One objective of this Public hearing is to recall service providers the subject of comment, findings or recommendations made in Commissioners' Reports. Ms Eastman will provide more detail shortly, but representatives of LWB, Sunnyfield, Yooralla and Afford will give evidence about developments in their practices and procedures following the hearings in which they were involved. Commissioners will be particularly interested to understand what the service providers themselves have learned from the Public hearings and the Commissioners' Reports and what measures, if any, they have taken to rectify any deficiencies in policies and practices that were identified in those reports. 

Broader questions will also be the subject of evidence at this public hearing. The broader questions include: the extent to which people with disability have choice and control in the way services are delivered, including choice as to where and with whom they should live; whether service providers effectively implement supported decision making for their clients; whether people with disability living in accommodation and receiving services from providers can self advocate or have access to independent advocacy when needed; the extent to which providers deliver services in a culturally sensitive and trauma informed manner; and the governance arrangements for disability service providers where those arrangements are required to minimise the risk that clients will experience violence, abuse, neglect or exploitation. Ms Eastman will identify the issues to be addressed in what will be a very busy week of hearings. 

Last month, the NDIS Quality and Safeguards Commission published the report entitled Own Motion Inquiry into Aspects of Supported Accommodation. This was the first time the NDIS Commission exercised its powers to initiate its own inquiry, in this case into incidents occurring in supported accommodation. The own motion inquiry conducted a detailed examination of around 7,000 reportable incidents and complaints concerning supports to people with disability in group homes that were notified to the NDIS Commission over a period of four years and three months, that is, from 1 July 2018 until 30 September 2022. 

The reportable incidents and complaints examined by the NDIS Commission were those made in respect of seven of the largest Supported Independent Living, SIL for short, providers in Australia. Representatives of four of the seven service providers will be giving evidence in the course of this week: Endeavour Foundation, LWB, Scope Australia Limited and The Disability Trust. The NDIS Commission's inquiry report notes that the experiences of people with disability in group home settings has had attention from inquiries over many years, but most recently through a series of hearings held by this Royal Commission. 

A recent review by the Department of Social Services, which resulted in a number of disability service providers being discontinued, was initiated according to the Minister's media release following evidence given to this Royal Commission which highlighted concern about the quality of providers. 

In November 2022, the Australian Government announced a review of the Disability Services Act 1986 (Commonwealth) and subordinate legislation to address priorities in the Australia's Disability Strategy and to provide a foundation for disability support services outside the NDIS. The government, in its announcement of this review, said it would consider the work of this Royal Commission and the information we, the Royal Commission, receive from people with disability in order to inform the review of legislation. 

The point I wish to make here is that the NDIS Commission report is just one example of many initiatives relating to disability policy undertaken during the nearly four years life of this Royal Commission. This is not a bad thing. On the contrary, it demonstrates that governments and the community generally have begun to appreciate the programs and policies must constantly be reviewed to address the disadvantages experienced by people with disability and, to use the language of our Terms of Reference, to lead to a more inclusive society that supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation. 

The work of this Royal Commission has contributed to this appreciation, although of course many factors have been at play, such as the advocacy of people with disability and their representative organisations and the impact of international human rights law, especially the rights of people with disability recognised in the Convention on the Rights of Persons With Disability, the CRPD. 

Intensive work is underway within the Royal Commission to draft our final report. This is, as I have remarked previously, an immense undertaking which requires great dedication, commitment and skill from the Royal Commission staff and others who are contributing to the work and responding to the challenges. The matters to which I have referred suggest that there are encouraging signs that our final report will receive the sympathetic consideration it deserves in the interests of all people with disability. 

I shall now take appearances. 

MS EASTMAN: Thank you, Chair. If the Royal Commission pleases, I appear as Counsel Assisting for this Public hearing with Cathy Dowsett, and we are assisted by Lisa Doust and Kate Beattie of counsel. 

CHAIR: Thank you very much, Ms Eastman. I will take appearances from any representatives that are in the hearing room. Can we start with the Commonwealth? 

MR DIGHTON: Thank you, Chair. My name is Dighton, appearing for the Commonwealth with Mr Hodge KC. 

CHAIR: Thank you very much, Mr Dighton. I understand that there is an appearance for Scope. Is that correct? [Check] it's a long trip. 

MR TEHAN: It was. I beg your pardon. I thought it was this afternoon. My surname is Tehan, and I appear on behalf of Scope. 

CHAIR: Thank you very much, Mr Tehan. UnitingCare Queensland, is there an appearance? That may be coming later. And similarly Melba, is there an appearance? 

MS HARRIS: Commissioner, Ms Harris. I appear for Melba. 

CHAIR: Thank you, Ms Harris. Now, there may be some appearances via video link. So can I invite any appearances –any representatives who wish to announce their appearances via video link, starting with the State of New South Wales. 

MS FURNESS: It's Gail Furness. I appear for the State of New South Wales, instructed by the Crown Solicitor's Office. 

CHAIR: Thank you, Ms Furness. Is there an appearance for the State of Queensland? 

MS McMILLAN: Good morning, Chair and Commissioners. My name is McMillan, initials K., King's Counsel, and I appear on behalf of the State of Queensland, instructed by Crown Law. 

CHAIR: Thank you very much, Ms McMillan. Is there an appearance for the State of Victoria? 

MS BEDFORD: Thank you, Chair. My name is Rebecca Bedford, and I appear for the State of Victoria 

CHAIR: Thank you, Ms Bedford. As far as I'm aware, there are no other appearances to be announced now. But if there are, perhaps the representatives could so indicate. In the absence of any further appearances, Ms Eastman. 

MS EASTMAN: Thank you, Chair. Counsel Assisting acknowledge the Traditional Custodians on the lands on which we are meeting today and across Australia. We pay our respects to First Nations Elders past, present and emerging, and as well as to all First Nations people following this Public hearing. 

Over the next five days, the Royal Commission will turn its attention to non government disability service providers and their responsibilities to eliminate violence, abuse, neglect and exploitation experienced by people with disability when receiving services and supports from the providers. In the five days available for this hearing, it will not be possible to examine all types of services, service settings and providers. However, the issues to be examined at this Public hearing will build on the thousands of submissions and accounts the Royal Commission has received from people with disability about their experiences with service providers. 

The Royal Commission has also received a significant volume of information from many service providers in response to notices requiring them to produce information and documents. As the Chair has said in his opening remarks, this is also a hearing that provides the opportunity to revisit the service providers who have appeared at previous Public hearings to understand what actions they have taken since the relevant Public hearing. 

I want to start with services. The word "service" itself is a word of generality, and it's apt to cover any helpful activity. All people in the community rely on services in all aspects of their lives. These may be services provided by governments, organisations or individuals. When considering services for people with disability, we sometimes distinguish between services described as "mainstream", "generic" or "universal" services that are provided to the community generally with particular services that people with disability use because of their disability. These are services exclusively used by people with disability which are not offered or provided to the general public. 

But not all people with disability, in excess of four million people in Australia, require or use disability services. Just as not all people in Australia are NDIS participants. An estimated 1.4 million people in Australia are described as living with severe or profound disability, meaning they sometimes or always need support with day to day activities and related to self care, mobility and communication. It's for this group that disability services are important. 

The National Disability Insurance Scheme, the NDIS, is intended to fund supports that are not provided, or supposed to be provided, via existing service systems. The NDIS is not intended to fund supports that are part of another service system's universal service obligation, including the making of reasonable adjustments for a person with disability to access such mainstream services. But perhaps this can best be explained by the comments of the Productivity Commission in its 2011 report, Inquiry into Disability Care and Support. The Productivity Commission said this: 

It will be important for the NDIS not to respond to the problems or shortfalls in mainstream services by providing its own substitute services. To do so would weaken the incentives of government to properly fund mainstream services for people with a disability, shifting the costs to another part of government. This "pass the parcel" approach would undermine the sustainability of the NDIS and the capacity of people with disability to access mainstream services. 

One of the issues to be explored in the hearing is this tension between the line as to what is a mainstream service and what is a disability service. But this hearing will narrow its focus to the providers of disability services used by people with disability who are NDIS participants, being people with a permanent or significant disability who require reasonable and necessary supports in daily living, accommodation, supported employment and day programs. 

As at December 2022, there were 573,342 NDIS participants. As at December 2022, the NDIA recorded that there were 151,629 active service providers. The cost of delivering disability services through the NDIS is significant. And in the 12 months to 31 December 2022, $31 billion in support was provided. 

Coming back to what the Royal Commission has heard since April 2019. As at 3 January this year, the Royal Commission has received information through submissions and private sessions that record as follows: 9,094 accounts of violence, abuse, neglect or exploitation of people with disability. Of these accounts, 1,198 –13 per cent –related to service providers or support workers. 

From these accounts related to service providers or support workers, people with disability have told the Royal Commission that they experienced violence and/or abuse in 53 per cent of the reports; neglect in 46 per cent of the reports; systemic abuse in 37 of the reports; and exploitation in 19 per cent. These numbers of course don't add up to 100, so there is that overlap in the numbers. 

People with disability experience violence, neglect and systemic abuse and exploitation in the accounts provided to the Royal Commission as follows: by paid support people in 77 per cent of the accounts provided to the Royal Commission; for the service providers settings, it is 35 per cent; and for unpaid support workers, one per cent. 

Chair, as you have noted, the NDIS Quality and Safeguards Commissioner recently published her report following an own motion inquiry about the supports and services delivered by NDIS providers. The Own Motion Report in part reflects what the Royal Commission has heard. The NDIS Commissioner revealed a significant number of reportable incidents notified to the NDIS Commission related to the conduct of workers, in particular support workers exercising undue influence over a person with disability; verbal and psychological abuse of a person with disability by support workers, for example, yelling at a person with disability or using demeaning language. 

This hearing will examine whether the policies and practices of disability service providers prevent violence, abuse, neglect and exploitation of people with disability and whether they deliver high quality and safe services. The hearing will also examine best practice responses to incidents or allegations of violence, abuse, neglect and exploitation of people with disability when using disability services. 

For those who have followed the public hearings of the Royal Commission, they will be aware that we have always endeavoured to ensure the public hearings are led by people with disability. This public hearing will involve fewer witnesses speaking about their personal experiences, but it will draw on what the Royal Commission has heard from people with disability over the past three and a half years. We will also ask disability service providers to address the various issues, and that's an important part of the Royal Commission's work to ensure we accord procedural fairness and service providers have an opportunity to respond. That is one of the central purposes of this hearing. 

So if I may now turn to the arrangements for this week. Commissioners, you will shortly hear from Sam Petersen. Sam gave evidence at Public hearing 3 in December 2019. Sam is a visual artist, writer, performer and advocate and has requested that we refer to Sam as "Sam.” At Public hearing 3, Sam described the experiences of living in shared supported accommodation, of support workers and service providers. Sam said –and I quote: 

I should have the same power to shape my life as anybody else, but for years I have had very little. 

Today, Sam will tell you about what has happened to Sam following public hearing –the Public hearing 3 in December 2019. Sam will speak about the impact of the evidence Sam gave at that hearing and how that evidence has been used by others. Sam will also describe the concept of "slow violence" where a person's needs are continually not met because of a lack of knowledge and funding. 

After Sam Petersen's evidence today, we will then focus on three areas which have emerged as key issues for people with disability and their relationship with service providers, and they are the areas of advocacy, choice and control and human rights. We will start with a panel dealing with advocacy. The National Disability Advocacy Program provides people with disability with access to advocacy that is intended to promote, protect and ensure their full and equal enjoyment of all human rights enabling community participation. Advocacy, as the Commissioners are aware, can take a range of forms. The Department of Social Services describes the approaches to disability advocacy in six broad models, referring to those models as Citizen, Family, Individual, Legal, Self and Systemic Advocacy. 

With a panel of experienced advocates today, we will examine some of these forms of advocacy. And the panel will address the following issues: the role of advocates and advocacy organisations; the skills needed to be an effective advocate; the challenges experienced by advocates; and the challenges of providing advocacy, including the barriers experienced when advocacy seeks to perhaps stand in between the person with disability and their service provider. We will also ask this panel about changes that could be made to ensure effective advocacy for people receiving disability services. 

And after lunch, I think we will move to a panel looking at choice and control. The National Disability Insurance Scheme (Provider Registration and Practice Standards) Rules 2018 require that: 

Each participant is enabled to exercise informed choice and control. 

It sounds good, but how does it work in practice? And we will address this issue with a panel of three service providers, being representatives from Supporting Independent Living Cooperative, which we will refer to as SILC; Scope Australia Limited, which we will refer to as Scope; and UnitingCare Queensland. 

Panel members will be asked about choice and control in group homes and shared support arrangements, including the exercise of choice and control when a service provider is delivering its services in a group or shared environment, for example, managing vacancies and rosters. They will be asked about policies and procedures which are designed to promote choice and control. And the panel will also be asked to address supported decision making, the way in which service agreements operate, service provider resourcing, staff training to support people to make decisions and transitioning out of group homes. 

And we will end the day by focusing on human rights. The CRPD has informed all of the Royal Commission's work. At Public hearing 3 and Public hearing 18, you heard about the relevance of the CRPD to disability services and whether non government providers have obligations to give effect to the CRPD rights. 

On the final panel for today, you will hear from three service providers, representatives of Melba, Scope and Synapse, about how human rights approaches have worked in their organisations. And we want to examine the following matters: the development of the human rights policies in their organisations; we want to ask who has responsibility in the organisation for ensuring human rights standards are observed; we want to ask how human rights policies operate in day to day practice; and what, if any, changes have been made because of the approach of applying human rights. 

If changes haven't been made following the introduction of a policy, we want to know why and what needs to be done. We want to ask about how clients with disability, their families and supporters can raise human rights concerns and the extent to which people with disability are aware of their rights. And we also want to ask the service providers what do they need to better understand and practice human rights. That will complete today. 

Tomorrow, we are going to move and turn our focus on workforce issues. On Tuesday and then into Wednesday morning, we will examine the disability sector workforce. In 2019, the Department of Social Services in its Growing the NDIS Market and Workforce Strategy Report, suggested the following. It said: 

The NDIS presents one of the largest job creation opportunities in Australian history. The Productivity Commission estimates the disability care workforce will need to approximately double from the 2014 2015 level to meet the demand created by the NDIS. This means that one in five jobs created in Australia over the transition period will need to be disability care jobs. Approximately 71 per cent of newly created jobs are expected to be support worker roles. 

The report says that: 

The government's long term vision is for a capable and adaptable NDIS workforce, with workers pursuing attractive career paths. This vision will require a mature market of diverse and strong providers delivering effective on the job capability development for workers, along with appropriate and accessible formal training pathways. 

So it's clear that a skilled workforce is one of the factors in delivering quality and safe services and to facilitate choice and control in respect of human rights. Later this week, you will hear from Laurie Leigh, the CEO of National Disability Services, NDS, which is the peak industry body for non government disability service providers. In the NDS's State of the Disability Sector Report 2022, workforce issues were identified as a key challenge for service providers, being described in the following way: 

In terms of workforce, 2022 is probably most accurately described as "going from bad to worse". Recruitment and retention challenges remained across the board and many staffing categories became substantially worse. 

The NDS report records that NDS members have identified a range of concerns arising with the workforce: providers reported moderate or extreme difficulty recruiting allied health practitioners; difficulty identifying and recruiting suitably qualified disability support workers and noting that the current award rates of pay do not reflect the complexity of the roles; and receiving limited applications for positions and identifying a bureaucratic burden as a barrier associated with employing international candidates. The NDIS Commissioner's own motion report addressed similar issues in relation to the workforce. 

So tomorrow you will hear from Zelda Riddell, a disability development and support worker who also lives with disability. She will tell you about her work as a support worker, working in different service settings and with other support workers. She will provide you, Commissioners, with a frontline perspective as a support worker on how services are delivered and the demands on support workers. 

Tomorrow, you will also hear from Dr Fiona Macdonald, the policy director at the Centre for Future Work within the Australia Institute. The disability workforce has been the main focus of her research since 2014. She will be joined on a panel with Angus McFarland, who is the Australian Services Union New South Wales and ACT Branch Secretary, and he has worked with support workers who are members of the ASU. 

Together, they will tell you about the systemic issues for the disability workforce. They will tell you there is an expectation that the workforce should be skilled, qualified and committed in discharging their duties, and this includes meeting the requirements of the NDIS Workforce Capability Framework that sets out the behaviours and core capabilities to be demonstrated by service providers and workers when delivering services. 

The Workforce Capability Framework is intended to promote improvement in the attainment of progressively higher standards in how supports and services are provided. While the expectation of continuous and higher improvement is laudable and should certainly be supported, it appears that the onus rests on support workers to have to develop their skills. Support workers are expected to perform at higher standards, but the Workforce Capability Framework appears not to recognise how that work should be valued and remunerated as the skills and demands increase. I think we want to pose this question: are we asking support workers to do more for less? 

You will also hear from Daniel Stubbs, the Victorian Disability Worker Commissioner, who is heading up the Victorian Regulatory Scheme established under the Disability Service Safeguard Act 2018 in effectively regulating support workers in Victoria. 

We will also ask the service providers, and there will be two panels dealing with workforce issues. On Tuesday, you will hear from representatives of the BET Group, LiveBetter and Minda. And we will ask them about the composition of their workforces; the challenges, if any, in recruiting disability support workers; their views about the qualifications required of disability support workers; and we will ask them about the regulatory arrangements setting the pay and terms and conditions for support workers. 

On Wednesday morning, you will hear from representatives of Afford, Araluen and Sunnyfield, who will address issues concerning training and supervision; staff arrangements; resourcing and rostering; the approach to managing incidents and complaints about support workers; and the casualisation of the workforce and its impact on retention of skilled and qualified support workers. 

Tuesday will also be an opportunity to hear from the new CEO of Sunnyfield about the developments within Sunnyfield following Public hearing 13 in May 2021. We will have the opportunity to ask Sunnyfield about its response to the findings and recommendations made in the Commissioners' Hearing Report, which is available on the Royal Commission's website. 

On Wednesday, we will turn to another area of importance and an area that has been the subject of earlier public hearings, and that is the issue of governance and management within service providers. Commissioners, you have heard about the composition of boards, the representation of people with disability on boards and in senior management roles and advisory committees. You have also heard about the failure of senior managers to address violence and abuse within the service. 

You will hear from a number of service providers on panels to address a range of issues, with representatives from The Disability Trust, Afford, Coastal Residential Services and Melba. The topics that we will address is to explore and understand the various regulatory systems and arrangements that are applicable to running the business of disability services. It will cover organisational structures; governance structures; management processes; recruitment and skill sets of board members and senior managers; systems of preventing and responding to violence, abuse, neglect and exploitation; managing risks; and approaches to the use of service agreements. And, Commissioners, you will remember that was an issue that arose at the recent Public hearing 30. 

The final two witnesses for Wednesday afternoon will be Ms Leigh from the NDS. It will give us an opportunity of taking that big picture perspective from a peak body. And you will also hear from Jess Harper, the CEO of Disability Intermediaries Australia, which is the peak body for plan management and support coordination providers and practitioners in Australia. So, we will ask them about the themes arising during the earlier two days. 

On Thursday, we will turn to examine how people with disability and their families and advocates can raise issues, concerns and make complaints about the services they receive. In particular, we want to examine the policies and practices to understand how service providers respond, how matters are investigated, whether a trauma informed approach is taken and the extent to which people with disability have been involved in designing these processes. 

We want to examine what remedial action is taken, including forms of redress. And in addition to the internal processes, the service providers will also address the reporting requirements under the NDIS Act and the processes of engaging with the NDIS Commission. In effect, we want to explore why transparency and accountability are key issues in the delivery of services. 

So, there will be three panels on Thursday addressing these issues, and you will hear from representatives of the Community Accommodation and Respite Agency, known as Cara; the Endeavour Foundation; The Northcott Society; and Civic Disability Services Limited, known as Civic. Thursday will also be an opportunity to revisit two service providers from Public hearing 3, Yooralla –and Mr Symonds, the now CEO, will give evidence –and from Public hearing 20, Life Without Barriers –and you will hear again from Ms Claire Robbs, the CEO, about the initiatives introduced following Public hearing 20. 

On Friday, we want to turn to innovation. Commissioners, at the recent Public hearing 31, you heard about visions for an inclusive Australia, which included evidence about inclusive design, co design and rethinking how services are designed and delivered. On Friday morning, you will hear about innovative approaches to disability service delivery, with representatives of Mable and Hireup, who operate digital platforms to connect service users and support workers. You will hear about how the platforms operate, how the digital platform operators engage workers and whether they ensure the delivery of quality and safe services. 

You will also hear from Synapse, Summer Housing and Summer Foundation, and you will recall Summer Foundation also gave evidence at Public hearing 3 in December 2019. And they will talk about different approaches to providing accommodation for people with disability as alternatives to group homes. The representatives of these service providers will tell you what's different in the approach they take and some of the issues that they have faced in implementing new processes. 

Then we turn our attention to the NDIA and the NDIS Commissioner. We understand they will follow the proceedings over the course of this week and, in addition to the detailed statements that they have provided, we will ask them about the issues arising and, in effect, what is on the agenda for both the NDIA and the NDIS Commission into the future. 

So, Commissioners, I want to give the usual content warning, and I think the slide will come up on the screen. As I said, our focus is always the experiences of people with disability, although you will hear very few direct experience witnesses this week. Nevertheless, some of the evidence may be distressing, and the slide on the screen provides the relevant contact numbers. 

I also –and this might be, I think, now the 31st time I or Counsel Assisting has said, that we remind everyone of the provisions in the Royal Commissions Act and, that is, we draw attention to section 6M, which provides that any person who uses, causes or inflicts any violence, punishment, damage, loss or disadvantage to any person on account of that person giving evidence or information to the Royal Commission, commits an offence. 

So, Commissioners, thank you for the opportunity of giving you a very high-level overview of what this hearing will deliver, I hope, over the next five days. And perhaps if we have a very short adjournment of a minute or so just to reconstitute our bar table, and we will hear from Sam Petersen. 

CHAIR: All right. Well, it's just after 10 to 11 Brisbane time. We will be adhering, I think, to the timetable if we resume at 11. Is that convenient? We will adjourn until 11. 

<ADJOURNED 10:51 AM 

<RESUMED 11:02 AM 

CHAIR: Yes, Ms Dowsett. 

MS DOWSETT: Thank you, Chair. The first witness this morning will be Sam Petersen. Sam's evidence was pre recorded in Melbourne on 24 January this year. The pre record runs for approximately half an hour. You will hear me introduce Sam at the start of the pre record. I ask that it be played now. 

CHAIR: Yes. Thank you. 

[video plays] 

MS DOWSETT: Sam Petersen first gave evidence before this Royal Commission on of December 2019 in Public hearing 3. The experience of living in a group home for people with disability. Sam's statement dated 27 November 2019 is Exhibit 3019. Sam has more recently prepared a statement for Public hearing 32, dated 24 January 2023, in which Sam talks about things that have happened since Public hearing 3 and shares insight about disability assist provision in Australia, including some of Sam's own experiences receiving disability support services. It is Sam's preference to be referred to simply as Sam. I am grateful to Sam for the time spent preparing this new statement. I welcome Sam back to the Royal Commission and invite Sam to read the statement. 

SAM: Hi, my name is Sam Petersen. Since the last hearing I now go by the pronounces you/your or just call me Sam when referring to me. I am now 38 years old. I am still a visual artist, writer and performer. I'm an AAC and power wheelchair user. I am a third-generation white settler of German and British decent. I live and work by the Birrarung on the stolen lands of the Wurundjeri and the Boonwurrung lands of the people of the Kulin Nation. I pay my respects to elders both past, present and future. Land that was and still is being stolen. 

My access needs in this case are time to communicate. I will continue by saying that it is very unfair that my labour is not remunerated for this. And it becomes public property for everyone to use. One of my support workers recognised my writing in one of their occupational therapy training modules. It was my testimony from this Royal Commission and the lecturer had me as anonymous. I tried to get further work out of it, but the lecturer said my writing is too hard for the students emotionally. 

I can only say the truth. Another support worker said, "it's really cool how you're part of ‘A Nation Changed’ podcast." There was a clip of my testimony. At least they had my name, but it had been out for a year, and I hadn't known anything about it. I mean, I was honoured to be on the podcast, but I didn't know anything about it. And how many more that I don't know about? This not recognising our labour is part of the problem. This is not valuing us. It costs a huge amount of energy, both emotionally and physically to complain. And for people with disabilities it costs even more, because we have so much more to get over to get anything done. 

I had to choose between getting my uni assignments done or complaining. You are very lucky now that I have the time and capacity to spare. How many more people with disabilities are silent because of this? There must be so many who say “things are fine”, because it's too much for them to rock the boat, because it would mean so much communication. In had the past so much of what I had to say has been just brushed aside. The gaslighting was quite bad. So I often went to all that trouble with little result. And there are all those fell fellows who do not have words at all, but nevertheless can communicate, just a great number of people aren't listening. And I shouldn't have to answer these questions because I am the victim. I’ve had people insinuate that I’m doing this for attention. Anyone who thinks I am only doing this for attention doesn't know how much it has cost me. 

I have since found a term that does well to explain my experiences with the disability sector. Slow violence. Slow violence is when a person's needs are continually not met. In this case it is done through a lack of knowledge and funding, and these can feed off one another. Like the support worker isn't given enough training and time to do their job so then they are short with the client, then the client is upset, and this can be seen as bad behaviour to the support worker, so the support worker spends less time engaging with the client. I am writing a book, the Slow Violence Cookbook, that goes deeper into the slow violence that has happened and is happening to me. I am still living in the same apartment that I was in 2019 when I last appeared here and still loving it. I was guarded about my then support provider, because I wasn't having the best time with them. I was hoping it was teething trouble because they were trying a new support style, and at first they were better than the previous provider, but they became just as bad and far more psychologically abusive. A manager had written in a group email complaining about someone (one of us clients) and while they didn't actually name anyone, there are only six of us. So, it wasn't very anonymous and seemed to be attempting to make us all think, "is that me? " And/or be suspicious of the others. I asked them to send an apology to all of us clients and when I asked them, "did you send it?", they said, "I can't give out that kind of information." I asked the other clients, and they hadn't received any apology. 

It just made clear the double standards that exist within these organisations. I never got a straight answer out of management about anything. Like early on in the pandemic I was asking if they had PPE and could not get a straight answer out of them. I ended up ordering my own PPE, but then I found out they did have PPE. And their responsiveness to preferences was very lacking. I had an inadequate document about me for about two years. First year I didn't know anything about it and the second year was them being unresponsive about updating it. Meanwhile, for the second year, this document was the document support workers read before seeing me. 

Another area where this support provider frequently failed was around complaints and feedback. The responses from management to complaints or negative feedback from myself and others was inconsistent, inadequate, and untimely. Sometimes complaints and feedback were simply ignored. I was expressing concerns to the manager at one point, saying a support workers was working too much and showing signs of burnout. The manager accused me of being critical of the workers and said I was in danger of all the support workers not liking me because of this. The support workers loved me by the way. They were so out of touch with their workers. And they kept the support worker on who I found to be dangerous and complained about. They weren't put on my one to one shifts anymore but were on shared support a lot. This put me in a position where I didn't feel safe using the shared support service. They had very good support workers and some of them really needed more training. It was better in a way because the support was one on one but still not great. Another failure was clients not being properly consulted or involved in the process of interviewing and hiring our support workers. They told us at the beginning that we would be involved in this. They did for a little while, but quickly stopped consulting us. 

The management literally cried on me on a number of occasions. They would say, "we are going to get better" but they never did. Crying on me when I should have been the one crying. Crying on me when I had been ordered not to cry so often over the years. Crying on me so I feel guilty by default. Crying on me to shut me up. Crying on me to shut me up. One of my fellow clients – there are six clients living in our apartment complex that used the same support provider – sent a letter to our housing provider saying that we were going to vote on our support provider and the next thing we knew the support provider gave in their notice and we were left with little time to find a new provider. At this point most of the residents gave up on support providers. Most of us now just employ our own support directly. Now my freedom in what I want to do each day is only limited by what times support workers are available, and funding of course. When I was with a provider, there were a lot of limits put on how, and when, I could use my support. So, with our new provider, I only have experience with the shared support service, and I hardly ever have to use them because I have much more support in general. So, with my current situation, I can't tell you what a good support provider looks like. And you asked me to make recommendations. When really the whole of society needs an overhaul. 

We still feel the wrong things about people with disabilities. They see us as scary and yucky and that we are stealing their money. But they are too afraid to admit it because of people's reactions. So they feign pity as a way of controlling us, when really they wish us dead already and out of the way. And this "pity" becomes real to them, so they infantilise us as a way of coping. And we are you. I know, I know, I'm stating the obvious, but it isn't said enough. Just the other week, a nurse said that she was visiting a patient in their own home and the support worker had no pants on. And the patient was still in bed with the support worker having no intention of getting them up. It is because of the general lack of support that society feels suicidal when they think of being us. We could say that this is the price of capitalism but if you truly live by capitalism then investing in the community gains money. For every $1 spent by the NDIS the economy gets $2.25 back. Sorry, stating the obvious again. 

I hope society is changing enough. We devalue support work. We devalue it with our attitudes, pay and the perception of the job being temporary. It is so, so wrong I have to put so much of my energy into training a support worker and can't keep doing it. Thereby we formalise people with disabilities being devalued, setting us up to worse conditions and worse treatment. I guess this Commission will show them that they are in fact doing something wrong, not just saying it's okay when it isn't because society doesn't care. But I'm not holding my breath. 

Not everyone can manage their own support workers. I really don't have the energy; it's exhausting and scary but I have found this is the only way of getting my support needs met. I have tried to engage support providers since, but they have been so slow that I have found my own support in this ridiculous bare market while still waiting for the providers to get organised. It is very hard for me but still faster and safer than waiting for a provider to meet my needs. And I cannot really afford a support provider because my SIL requires more funding than the NDIA will pay. I would have to give up support hours, which I cannot do. Going out on my own you would think I run the risk of having no one to support me, but over the years I keep finding out that this is not the case. Too often with a support provider I have had no one or little support. I have found much more stability on my own and this is really infuriating because you would think the provider would be better at this. 

But to reiterate, it is still a constant struggle for me to get shifts filled and sometimes I can't. All of this has the threat of my funding being cut every year. Every year. Despite not currently being overly involved with a provider I do have some pretty sound ideas of what will work through my experience. Stop denying access for people with disabilities to communicate and gain knowledge from each other. I do this by your attitudes which are continually imprinted on all of us. We see support workers every day and they often talk to us about other clients and more often than not it isn't favourable to that client, so therefore we may not have a good viewpoint of other people with disabilities. This can lead to us not making strong or positive connections with the other people with disabilities around us. There needs to be more training of support providers and support workers by well-paid people with disabilities who require support workers and training that is made by multiple people with disabilities who require support workers. Not one of uses has all the answer and many have been cut off by the greater community by you. We need people with disabilities who require support workers to be supported, to be in the highest roles of support providers have a paid, good peer to peer support and mentoring network for support workers. Some support workers miss out on it and it is important for mental health. Though I'm not sure how to prevent the reinforcement of stereotypes of people with disabilities I find that happened a lot in the group home amongst the support workers. But coupled with more training it shouldn't. Build a real culture of transformative justice where the perpetrator isn't vilified but is prevented from causing trauma to another. Part of that is making it so the client feels able to communicate about the behaviour of the support workers before they became abusive, and is actually heard. Downsize and build good connections to other providers. Downsize because big companies can't stay as connected with individuals and cases of abuse will go less unnoticed. And you will have less overheads so you can pay your support workers fairly. Make connections with other providers because you need them. Like everyone needs good connections. Stop dividing up home support workers and community access workers. You have more well-rounded workers if they learn to do both, and you can have a lot more much needed freedom for the client. 

Have more capacity for support workers to be on paid stand by because it's unfair for support workers to cover at the last minute and often they can't. It will put less pressure on support workers knowing someone else is there as back up. It will help stop the detrimental self importance some support workers get and as clients need it. I can't offer this with my current funding. In my case there is always shared support but this is very limited in their capacity to support you and any plans of going out in my case have to be cancelled. 

How to be a good support worker. Don't be afraid of the intimate parts of support work. Body and mind. You have to be intimate. You have to be personal in order to support properly. But at the same time don't let any of your preferences in because it isn't your life, but know your limit of how much you can support and tell the client. . All of this will cost more money but support workers are not saying because they have too much pressure with lack of time. Not enough training and support, lack of perceived job importance, not enough money, so they have to work more hours, frequent shortages of staff so they have to work more hours than is sustainable. So, therefore a high turnover rate which costs you more money. Any money you spend you will get back in staff retention and for every $1 spent by the NDIS the economy gets $2.25 back. And most importantly it will mean less stress on the client and we will be more protective. This is so painful to say. Every day I'm fighting depression over this very issue. "How will I ensure support for me? " And writing this hasn't happened. I know these things will work but they aren't happening. And probably won't happen in my lifetime. For so long I thought there was not enough money. I thought that. Now I know there is. I am not sure which is worse. I feel how can I expect people to support me and, true, I can't. But how is it fair on me? As I said at the start, I found it frustrating to encounter parts of my last testimony in the world with my name and credit removed. I have a website where people can read more of my writing. Please include it with this testimony. It is www.sampetersen.com.au

MS DOWSETT: Thank you Sam for the time and care you have put into making the statement you have given today and for your time in reading it to us. 

[Video ends]

MS DOWSETT: Chair, I tender Sam Petersen's statement dated 24 January 2023. It will be Exhibit 32 1 and the pre record, the video, should be Exhibit 32 1.1. 

CHAIR: Yes. Both the statement and the video of Sam's evidence will be admitted into evidence and given the markings that Ms Dowsett has indicated. We add our thanks to Sam for preparing Sam's statement today and for being prepared to read that statement to us as part of the evidence. Thank you.

<EXHIBIT 32-1 STATEMENT OF SAM PETERSEN DATED 24 JANUARY 2023 

<EXHIBIT 32-1.1 PRE RECORDED VIDEO OF SAM PETERSEN 

MS DOWSETT: Thank you, Chair. I now propose that we take a 15 minute morning tea break and then resume with the first of the panels for this hearing. 

CHAIR: Yes. It's just after 11.30, perhaps 11.32, Brisbane time. Let's resume at 11.50. 

MS DOWSETT: Thank you, Chair. 

<ADJOURNED 11.32 AM 

<RESUMED 11.51 AM

CHAIR: Yes, Ms Eastman. 

MS EASTMAN: Thank you, Commissioner. So we turn to our first panel for this Public hearing. We want to focus on advocacy, and we have asked a number of advocates to share their experiences with us on the basis that they have had some involvement with the Royal Commission to date. So on the screen you will see Frederikke Jensen from VALID, and in the room you will see Cathy Milne, Kerryann Harman Schufft and Deborah Wilson. So they have all given their respective oaths and affirmations before the panel commenced and, Chair, in a moment, I want to say something by way of opening this panel and then turn to introduce them. 

<CATHY MILNE, CALLED

<KERRYANN HARMAN SCHUFFT, CALLED

<FREDERIKKE JENSEN, CALLED

<DEBORAH WILSON, CALLED

<EXAMINATION BY MS EASTMAN SC

CHAIR: First let me thank each of you for coming to the Royal Commission to give evidence. In the case of Ms Jensen, thank you for coming virtually in order to give the evidence. We are grateful for your assistance at the hearing and also at the other hearings in which you have participated. So thank you very much. I will now ask Ms Eastman to make her open and then to ask you questions. 

MS EASTMAN: Well, just, Commissioners, to provide context for this particular panel, I mentioned in the opening remarks the different forms of advocacy, and in the life of the Royal Commission you have heard from many advocates and also the peak advocacy bodies. Disability advocacy is essentially acting, speaking or writing to promote, protect and defend the human rights of people with disability. All forms of advocacy, whether it be individual, systemic –all forms seek to safeguard and raise awareness of the rights of people with disability and their dignity and autonomy. 

One thing which this Royal Commission has certainly highlighted is the importance of advocates. You are have also heard about the barriers which prevent people with disability accessing disability advocates and the consequences as a result thereof. I'm not going to touch on every Public hearing where issues of advocacy have arisen, but in the context of this hearing in relation to engaging with service providers, Commissioners, you will recall at Public hearing 3, Ms Sarah Forbes, the advocacy manager at VALID, spoke about the work that VALID did in providing individual advocacy services to more than 250 people with intellectual disability in Victoria. 

Also at that hearing, Kevin Stone, the CEO of VALID, said 25 per cent of VALID's individual advocacy cases involved people with disability living in a group home. And then of those cases, 25 per cent involved advocacy to address client to client abuse and 30 per cent involved staff client abuse. And he also told you that, on occasions, the advocates went into the group home environment to address and support people seeking criminal compensation as a victim of crime. Also from VALID, but at Public hearing 6 concerning psychotropic medication, you heard from Dariane McLean, and she said this:

Until families get to a crisis, there is nobody who is stepping in early and giving them the tools and understanding that they need to advocate for better outcomes for their family members. 

And you will also recall hearing about people with disability developing advocacy skills and self advocacy. Again, you will recall meeting a number of young people with disability who have been involved in self advocacy and then advocating for others themselves. You will recall at Public hearing 12 when we examined the issues concerning the COVID vaccine rollout, Suzie McNamara, Uli Cartwright, who returned at Public hearing 30, Greg Tucker and Anthony Reid, who also gave evidence at Public hearing 22, spoke about the importance of people with disability being advocates as well. So this panel is really focused on some of the very practical day to day features of what it means to be an advocate, the skills required of advocates and some of the challenges that advocates have faced in supporting people dealing with service providers. 

So I'm going to make some introductions. So, Cathy Milne, can I start with you. You joined an organisation called Side By Side Advocacy in 2018 to be part of the individual advocacy team. And I think you describe yourself as a passionate advocate in both personal and professional capacity for people with disability, degenerative neurological conditions, mental health issues, and you have been doing so for over 20 years. You have worked with people to navigate the NDIS and its complex intersections between health, education, housing, justice and the aged care system since the inception of the NDIS. There is particular ways in which you practice your advocacy and forms of communication that I want to ask you about during the course of the morning. 

In terms of Side By Side Advocacy, it's a small advocacy organisation that specialises in advocacy for people with intellectual disability, and you represented and advocated with and for Charlotte when Charlotte gave evidence at Public hearing 26 concerning Charlotte's life course and the importance of having an advocate as Charlotte has now found, I think what she described as her heaven, in the place where she now lives. So if you are happy for me to use Christian names, Cathy –that's right –is there anything else you would like to say that I have overlooked in terms of introducing you?

MS MILNE: No. 

MS EASTMAN: No? Kerryann, can I turn to you. We have seen you recently, and you have been an advocate for one of our witnesses at Public hearing 30, Julie Bury, and her move from Queensland to Kangaroo Island. And you have supported Julie as she prepared for and recorded her evidence on Kangaroo Island. But you have thrown yourself into the role of being an advocate over the past year. But you bring to that role a deep personal experience for yourself. You acquired a physical disability, and you have experienced living with that disability, but also your husband has experienced a significant disability in his life, also requiring care and support beyond the  family. Is that right? 

MS HARMAN SCHUFFT: Correct.

MS EASTMAN: Now, coming to being an advocate, your pathway was through working in strategic policy and development at both State and Commonwealth Government level. You have worked in policy, you have worked in media, and you have worked on a large number of campaigns, and that includes some campaigns around disability alliance groups. Is that right? 

MS HARMAN SCHUFFT: Correct. 

MS EASTMAN: And you decided that you were going to do something, and so you joined with Speaking Up for You, SUFY. Was that right?

MS HARMAN SCHUFFT: Correct.

MS EASTMAN: And SUFY has participated in our previous hearings. And SUFY is an independent social advocacy organisation for people with disability who mostly live in Brisbane, Moreton Bay and the Redlands, and that's where my limits of Brisbane stop. I don't know where the Redlands are. Regions of Queensland. And in a sense, the objectives of SUFY are to build connections with individuals, support and walk with them to make positive, real and sustainable changes to a person's life. Is there anything I have overlooked in introducing you? 

MS HARMAN SCHUFFT: That sums me and SUFY up rather nicely. 

MS EASTMAN: Deborah Wilson, can I turn to you. You are the CEO of Independent Advocacy in the Tropics, previously known as Independent Advocacy North Queensland. You have been on the board of DANA, and you have served as the Deputy Chair of DANA from 2017 to 2022. So you have experience both in the smaller advocacy organisation, being Advocacy in the Tropics, but also had the opportunity to work with a larger representative disability people's organisation. Is that right? 

MS WILSON: That's right. 

MS EASTMAN: Now, in terms of the work that you have done, you have done a lot of work with the Royal Commission, you have attended community forums and you have supported some of the clients to also participate in the community engagement and forums with the Royal Commission. 

MS WILSON: That's right. Along with my advocates, yes. 

MS EASTMAN: And you appeared and gave some evidence at our first substantive hearing at Public hearing 2 in Townsville in November 2019. 

MS WILSON: That's right. 

MS EASTMAN: And the nature of the work that the Independent Advocacy in the Tropics does is to advocate for people with a whole range of disabilities of different types in North Queensland, but you cover an enormous area, do you not? So there is four of you who pretty much cover something in the equivalent to a small European country. Is that right? 

MS WILSON: Yes. We cover about a third of the state, over 540,000 square kilometres. 

MS EASTMAN: And so the nature of that advocacy will often depend on being able to connect with the person who requires the advocacy services. So that outreach is a significant part of your work. Is that right? 

MS WILSON: That's right. It's very hard to reach people. Yes. 

MS EASTMAN: Thank you for returning to the Royal Commission again. So now if I can turn to Frederikke, who is online in Melbourne. So you joined VALID in January 2020 as an individual advocate, and you became VALID's advocacy manager in June 2022. And before joining VALID, you have worked as an NDIS support coordinator and as a disability support worker. You have qualifications, including a master's in communication from a university in Denmark, and you also have qualifications in psychology. And you are currently pursuing a master's of narrative therapy and community practice at the University of Melbourne. So, for the transcript, I note that you nod, and I will take that as a yes. 

MS JENSEN: Yes.

MS EASTMAN: Is that right? 

MS JENSEN: Yes. 

MS EASTMAN: Okay. We have had many dealings with VALID, and the work has been very important. We understand that VALID's services are primarily directed at supporting people with intellectual disability in Victoria. Is that right? 

MS JENSEN: Yes. That's –that's correct. So adults with an intellectual disability. And it sort of ranges from contacts with people in group homes, people involved in the justice system and parents with intellectual disability who are involved with Child Protection as well. 

MS EASTMAN: Alright. Well, I welcome and thank all of the members of the panel. And I want to really dive into the experience of being an advocate. And I want to start by asking, for each of you, did you have to have any particular qualifications or training before you decided that you wanted to take on the type of advocacy that you have described for us and that you undertake? So, Cathy, can I start with you. 

MS MILNE: Quite a few years ago, I worked at a different advocacy organisation. It was the organisation that had the first citizen advocacy program in Australia. And when I found that role, I suddenly realised I had found a role that let me do what I had always known I wanted to do. And after I left that organisation, there aren't many opportunities to do highly specialised advocacy. And I was leaving one job, and the job at Side By Side Advocacy came up and it seemed meant to be. 

I don't have specific training in advocacy, and I think the instrumentality of advocacy is such a tiny part of it. My background is in a lot of the theoretical underpinnings of advocacy, philosophy, law, sociology, as well as developmental and educational sciences. But the most important skills, I think, for being a good advocate are the softer skills, and they're not ones you can acquire necessarily through formal qualifications. 

MS EASTMAN: By "softer skills", do you mean the ability to communicate with the people for whom you provide advocacy services, listening and understanding? 

MS MILNE: Yes. So communication skills, but also a certain flexibility of being. There's no one style of communication that's going to work for everyone. There's no one way of engaging with people that's going to meet the needs of people who have such a huge diversity of experience, have such a huge diversity of support needs in terms of communication or decision making or emotional regulation. So there's some really very interpersonal skills of being able to just roll with whatever is there and being able to put the person for whom you are working right at the centre of that. 

MS EASTMAN: And, Kerryann, you have sort of come to this work of advocacy in the last year or so. And I take it that no one required you to have particular qualifications or do a training course or have a certificate before you entered the role? 

MS HARMAN SCHUFFT: No, I wasn't required to have anything. No. But I guess I wrote a reasonably good application. I wanted to come along to make an impact on systemic advocacy. And I thought after many years of strategic policy work, which you have mentioned, it would be good to see what was happening at the grassroots, particularly with respect to disability and the disability sector based on my own personal experience and my family's experience. And I also wanted to put in a systemic submission, which –I thought the safest place to put it in was as an employee within an advocacy organisation. And I came primarily for that reason. 

I was able to say that I have a BSC in psychology. I have an MBA. I'm a graduate of the Australian Institute of Company Directors. I'm a fellow of the AIM. I think it's fair to say that I've got good experience about systems and bureaucracies across various states, territories and the Commonwealth and how things work and what –and the machinery of government, I guess. 

MS EASTMAN: And, Deborah, some of the history of being an individual advocate arises because people volunteer their time and that they agree to step in and be an advocate to meet a particular need. Over your experience, have you seen a change from a very volunteer type approach to something requiring advocates to have particular skills, be they the soft skills Cathy has described or whether it requires other skills obtained through training or achieving particular qualifications? 

MS WILSON: I think the role of an advocate has grown, especially with the introduction of the NDIS. There is so many advocates needing an understanding of Acts, rules, regulations to be able to provide proper support. We, at Independent Advocacy, put our advocates through training. So, they –they are holding a –at least a Certificate of Advocacy. They come from all different works of life. We have those coming from a management role, social work background, working with First Nations people, doing other sorts of case management programs. So we have a holistic approach. And also being able to negotiate and mediate, being able to communicate effectively across all different aspects, it's trying to reach our client and get their instructions and understanding so we can work with them and for them. 

MS EASTMAN: And, Frederikke, can I turn to you because VALID provides advocacy services, but it also does training to assist people with disability to become advocates for themselves. 

MS JENSEN: Yes. 

MS EASTMAN: In terms of looking at VALID's experience in relation to, say, the qualifications or skills that an advocate should have, do you have a view on that? 

MS JENSEN: I think, you know, for the –obviously the individual advocacy team at VALID, I think you can come from different sort of walks of life and experiences. And I think the tradition at VALID has been that you actually do sort of look at the team as a whole and you recruit people with different experiences. So some might come from social work backgrounds, some might come from communications psychology, and some would have worked 30 –you know, 20 years as a disability support worker and other roles. So I think that's really valuable. And personally I came, you know, from the sector at first as a disability support worker and support coordinator. 

With regards to the self advocates, they also inform the work we do in individual advocacy and, you know, there's a synergy between having both an individual advocacy team at VALID, individual advocates and also some systemic advocacy. Because quite often, you are able to raise individual cases at a higher level when you need to in some of those bureaucracies mentioned if you do systemic advocacy and if you keep your relationship open with other organisations. So I think you can't, like everyone else has said, just say that, you know, this is what makes an advocate. It is also about personal skills and some understanding of power relations in our society and how they work, and the bureaucracies. 

MS EASTMAN: So I want to turn to the way in which you all practice advocacy, and we have had an opportunity to see all of you in action as you've supported witnesses and people appearing in the Royal Commission. One feature which we have observed is the way in which you all practice genuine supported decision making. It's sometimes easy for an advocate to say, "I know exactly how to fix this. I will get in. I will make it all better. I will fix it. I will call –I will do this.” But for the work that we've watched either for your organisations or for each of you in person, is whether you use the label "supported decision making" or it just reflects, Cathy, as you say, the soft skill, is that your approach to advocacy has been very much enhancing and empowering the person who you assist. Kerryann, can I ask you about how you do that? 

MS HARMAN SCHUFFT: Well, I found amazing similarity between good policy work and advocacy in that it's co design. It's not consultation. 

MS EASTMAN: So what do you mean by "co design"? How do you go about it? Do you sit down and have a –

MS HARMAN SCHUFFT: I need to engage with them. I need to engage in a way that they find meaningful. I need to empower them by giving them a range of information, as holistic as I can give, information about possible solutions. The important part is identifying the problem. It's always a lot easier to solve a problem, particularly a wicked problem, if in fact you have got it clearly defined and scoped. And then I try to help them understand all their options available. And I try to give a very clear cost/benefit analysis of each of the options, I mean, what it might cost, what it might deliver, and assist them in their decision making. But it is very much walking beside them. I'm always clear to make it very clear, "It's your decision, and whatever you want to do I will support you in it.” 

MS EASTMAN: And, Deborah, how, in terms of Advocacy in the Tropics, do you take that approach of the supported decision making where sometimes the easier or more expeditious way is to just step in and say, "We can do this, this, this and this," and the problem is sorted? 

MS WILSON: Very much the same as Kerryann. We are there to act on our client's instructions. We very much give them all their options available and what their decision will mean one way or the other. Very much at times you have –and we have clients or client families, support workers, wanting something else for the person. But we are ultimately only acting for our client, their best interests and their wishes. So that's our main focus. Everyone has a voice, and we are that voice on occasions. We also very much teach self advocacy. So it's empowering people to –once they leave our service, to be able to act for themselves, to be confident and to come back and use us as a tool if they need us. 

MS EASTMAN: Is the ultimate aim that a person will be able to advocate for themselves? So while they still may need a separate or independent advocate from time to time, that part of the role is to empower people to advocate for themselves? 

MS WILSON: Very much so. We hold workshops in that regard. Our wait list is self advocacy supported. So very much to give people that empowerment. 

MS EASTMAN: Right. Cathy, can I turn to you. Not all people have communication skills that make it easy to be an advocate, and some of the work that you've done is to support and advocate for people who need augmented communication or may not be verbal in their communication. What does that mean in terms of practising supported decision making? 

MS MILNE: Sometimes it means creating a space in the bureaucracy for them to realise that right. There's a lot of structural issues, that if someone isn't able to express their choices in verbal or written form or using more high tech assistive technology, there's just a deferral to substitute decision making. Recently, someone I was working with, there was a drive by the service provider to have a Public Guardian appointed to make an accommodation decision because the person couldn't verbalise whether they wanted to live there or not. Entire body language said, "I feel safe here. I want to be here," but that was disregarded as a valid form of communication. 

So for some of the people I work with who may communicate informally, it is literally asserting their right under the legislation to retain decision making over their own life where they have capacity for the decision at hand. For other people, it's about building up enough of a communication relationship and a partnership to be able to understand those types of less readily recognised forms of communication. 

MS EASTMAN: Do you think that somebody –that's something that people can just learn by attending a course or achieving a particular qualification? 

MS MILNE: That's why we use the language of "informal communication" rather than "non verbal". It is informal by its nature. So it's –it cannot be broken down to a keyword sign course or, you know, learning how to use the specific communication app on your phone. It's about relational communication and being present and giving opportunity for people to communicate in ways that are meaningful for them. 

MS EASTMAN: Does anybody else –before I go to my next topic, and I want to start with Frederikke on that –want to say anything about advocating and supporting people who also need support in terms of the mode and the method of communication? Do you want –Kerryann? 

MS HARMAN SCHUFFT: I agree totally that there is a real problem about communication. I found that with a number of my DRC participants that when trying to assist them to get some legal help, particularly when the Public Guardian or Trustee in Queensland is breathing down their necks, they have to be able to prove capacity to qualify for any legal advice or legal representation. A number of mine –in fact, three –have been unable to –I know they have capacity. It's clear they have capacity, but because they can't do a specific task on a specific day or answer a question in a way that they regard as appropriate –for example, a young man who has been removed from his family because they were –basically as a result of some fraud on behalf of the service provider, which has subsequently been undone but can't reverse the original decision, he failed to get assistance recently for a QCAT hearing –subsequent to QCAT hearing because the solicitor who attended his home –he was unable to give his bank balance as of last Friday. I couldn't give you my bank balance as of last Friday. It's ridiculous. 

MS EASTMAN: Well, Cathy, we have seen you apply those techniques with Charlotte –

MS MILNE: Yes. 

MS EASTMAN: –where an issue arose in relation to Charlotte's capacity to make decisions for her future and where she wanted to live. And what was the technique used, instead of asking about the bank balance or who was the Prime Minister of Australia? How did you apply –

MS MILNE: We were so fortunate to be able to access a pro bono legal program, and Charlotte was able to provide her testamentary capacity using supported decision making, I guess, to use the jargon. So the lawyer applied the standard sorts of capacity assessments, one of which was to ask Charlotte how much the average property would go for in Sydney. And then when she wasn't able to answer that, having lived either in residential institutions or public housing all of her life, they switched to a car. And, again, she's never been allowed to have a licence. These questions are irrelevant. 

So the lawyer asked me what kind of meaningful questions I could ask Charlotte that would achieve the same outcome. And so we asked Charlotte how much a hospital bed would cost and how much money would she need if her fridge broke. Not only could she answer how much an average hospital bed cost, but she could demonstrate that she understood the concept of inflation and had observed enough of current affairs to understand that inflation was high and so a new hospital bed was likely to cost substantially more than it did last time she got one. 

The outcome of this is Charlotte has been able to draw up privately all future decision making documents that she needs. And even if the point comes where she has to go under a public rather than a private guardian, she has fully documented witnessed evidence of really important future planning decisions she has made on the record in a manner that will be recognised by courts and tribunals. 

MS EASTMAN: Frederikke, can I turn to you. One issue that has arisen for the Royal Commission is how advocates can get into and support people living in group homes or in very closed settings, and the Royal Commission has heard that sometimes it's very difficult to get into the settings to be able to support a person with disability. And this is, I know, an area that VALID does a lot of work. So what can you tell us about taking advocacy into really closed or segregated settings? 

MS JENSEN: Look, as you said, it can be extremely difficult. Like, our self advocates do go into group homes, and that's a funded program, and that's all arranged. But we also do receive referrals from people where it's not possible to speak to them in the group home out of fear of victimisation. Because it's a known problem that –basically, some service providers, they –they might withdraw service. They might blackmail. They might say, "We will, you know, evict you," and things like that. So sometimes for individual advocates, it can actually take a little bit of time and sort of working around and contacting different people and, you know, arranging meetings with a whistleblower or support worker out in town. That's sometimes the way that's done. But where the self advocate is going, that is already prearranged. And that is very proactive work in that part of VALID, whereas the work we do in individual advocacy, it's more reactive when there is already a crisis and a problem. So, yes. 

MS EASTMAN: The issue about needing an advocate in a crisis because there's a particular dispute or an incident that might threaten a person's ongoing residence in a group home, that there's advocacy to deal with a crisis situation. But for the every day, to be able to have support to advocate on the decisions that you wish to make or really exercising choice and control in practice in settings that are quite closed off, how can advocates get into those settings? 

MS JENSEN: Look, I –our opinion is certainly that that needs to be mandated for that to happen on a wider scale. So unless it's actually possibly put in the Disability Act and mandated that those people should have advocacy as a given, I fear that it may not happen across the board. And I think it's something that is really important to discuss and something that we are pushing for. Because we work with people with intellectual disability, and there are people whose voices are simply not heard unless you actually mandate, you know, that they should have that kind of advocacy and support for decision making. 

So, you know, some service providers might contact advocacy services and say, "This person can't, you know, decide what they want and we want a guardian.” I have heard other advocates on the panel say that. That's not always a good solution because supported decision making can actually, you know, be done well, but it does take a bit of time. But I think the resources needs to, you know, be provided, and the funding, and then it should be mandated that people should have access to those services in those settings. 

MS EASTMAN: When you say it should be mandated, what do you mean, that there should be a law or a policy that recognises that there is a right to access advocate and advocacy services and a mechanism to ensure that if that does not occur that there is some accountability or consequences to whoever has blocked it, whether it's a service provider or another person? 

MS JENSEN: Yes. And one example is that, you know, people need an independent person to have a review of their behavioural support plan. So that is in the Act, but it's not necessarily mandated that it should be an advocate. There is some description of who that should be, and –but, again, we have got quite vulnerable people who are on a behavioural support plan and, you know, sometimes that might –there are shortcuts from the service providers as to who that independent person is, and we sometimes discover by accident that the independent person before us at the last behavioural support plan maybe wasn't, you know, an appropriate person. 

So, yes, I think it should be ensured that, you know, that is done by advocates and not a family GP who might already be prescribing the psychotropic drugs and who are under pressure from the family or the service provider because they can't manage the person, that, yes, they are the independent person. Because that happens. 

MS EASTMAN: So, Deborah, can I turn to you. I've asked about closed settings in the sense of people living in group homes or living in segregated environments. But sometimes segregation can actually occur in families in the sense that the families become the closed environment and the families say, "We know best for our family member. We are supporting our family member. And so the decisions we make for our family member, this is what will be happening.” How do advocates get into those types of closed settings where the family members have very fixed and firm views about what is in the best interests of their family member with disability? 

MS WILSON: With great difficulty, unless we are able to get in to see the person through their support network, their support workers, their support services that have concerns about what is going on in the family environment. Because we have to get to the person in a neutral space, so they feel comfortable and able to tell us exactly what is going on without the –without having a family member. And we need to do that face to face because we don't know who is listening in on conversations. A lot of times, people may not have access to digital technology. And you can't really read a person or understand what they are trying to communicate even if you can see them on the other end of the video. A lot of times, family members will also be their guardian. We can't act without their consent. So we then cannot provide any type of service that that person may want. 

MS EASTMAN: Cathy, I can see you indicating by your body language you've had some experience with this as well. What's been your experience where the advocacy support is required within a family setting? 

MS MILNE: So I was reflecting on –I was working –managing an intensive family support program funded by [ADHAC] at the time of NDIS transition, and we had great fears at that point that family members being perceived as the holder of the funds would have really dramatic impact on the ability of service providers to act as safeguards. And I have seen that panning out. There were ways previously where you could continue until –as a service provider to keep engaging with the person irrespective of the instructions of the family around them in a way that's just not possible when supports are reduced to a transactional service agreement. And there are so many situations where we observe service providers who have the best interests and supported decision making at heart, but the fact that family or other types of decision makers can end service agreements unilaterally weakens the ability of those service providers to really put the person and their choices at the centre of it. 

MS WILSON: That's so what we see. And not only in the family context, but those who are with mental health issues going into a mental health setting. Many times, as soon as they are admitted, an application is made for guardianship. If they have public housing, their application for public housing is withdrawn. So they are left at the mercy of those types of institutions to make all their decisions and have their rights taken off them. 

MS EASTMAN: Kerryann, this brings me to an issue that you've touched on earlier and, that is, that once you are into the closed setting and you've got the relationship with the client for whom you're advocating, one of the roles of advocates is to navigate some quite complex service systems. So you have all spoken about guardianship. That is a complex system. There are a range of other complex systems. Is it a heavy burden for the advocates to have to have a very solid and thorough knowledge of all of these different service systems to navigate with the client through them? 

MS HARMAN SCHUFFT: Yes, it is. Can I just clarify something. I'm a Disability Royal Commission advocate. And in SUFY, we have individual advocates, NDIS appeal advocates and DRC advocates. My job was to gather stories and feed them in. I'm not supposed to give individual advocacy. Clearly I push the envelope pretty heavily, as you would know from the work I've done. 

MS EASTMAN: But isn't that part of even an internal service? 

MS HARMAN SCHUFFT: Exactly. Exactly. 

MS EASTMAN: I'm very happy if there is issues that you want to raise about navigating the Royal Commission service system as an example. 

MS HARMAN SCHUFFT: Yes. 

MS EASTMAN: So best practice. But even then, doing that, you can't be separate from the service systems in which your clients are living. 

MS HARMAN SCHUFFT: Exactly. You can't, and you need to know it –and it is difficult to find your way through. It is difficult to work out the various tiers of government, particularly which services within your organisation are Commonwealth funded, which ones are state funded, which –can they cross over. Can I actually provide some of that because I can and I know the case and it's effective and efficient to do that, or do I have to go back to an intake officer and take them around top and back down again. In my opinion, there's a large amount of resource wasted on grant acquisition, grant acquittal, with very, very detailed reporting on outputs rather than outcomes. This is all burdensome for advocates and very wearing. And put on top of that the vicarious trauma of dealing with people who are very disadvantaged, highly traumatised and always in a state of crisis. It doesn't end at a point in time. I think the ask on the advocates is enormous. It really is enormous. 

There was a very good panel discussion at the AFDO, Australian Federation of Disability Organisations, last September where they put together a panel of young advocates and asked them what were the biggest barriers. And they said people's perceptions that you have to have a social work degree to do it and people's perceptions that, in fact, it wasn't necessary –there weren't any valid transferrable skills to use, and they felt like they were excluded from pursuing a career in advocacy and a number of them expressed concern that they would just walk away from the sector. So it's a big job, rather as your previous evidence from Sam is. Advocates are undervalued in a big way, and they are underresourced. They are underfunded. I estimated for this there's less –fewer than 120 disability advocates right across Queensland, with a total budget from the State Government of about 5.1 million after you cut out the money that was in –to set up a network which went to QAI. 

Now, the math isn't good on that. We have got a million people with a disability. We have got 306,000 approximately, as of September '22, with a profound or severe disability. We have only got 1,600 as of September '22 in the NDIS. Where are the rest of them? And we have got a handful of advocates right across the state. I've got volume of people seeking assistance, and quite a few on the islands in Moreton Bay, and you have got a huge area spread –a huge map. There's –it's clear, without writing big papers and submissions about the need for advocacy. I mean, the need has been well established. The bottom line is it's not funded properly and the need for advocacy isn't going to go away any time soon. The NDIS is in crisis. The Quality and Safeguards Commission, from my time, is very much in crisis. Why not have longer cycles –funding cycles? Why not have some recurrent –

MS EASTMAN: I want –I might come back to funding when I ask you about where we might go –

MS HARMAN SCHUFFT: And we are going to lose a whole lot of advocates and all their expertise from the DRC advocates on 30 June. All that tacit knowledge of what's wrong with the sector and the people and the problems and what they need, that is all going to haemorrhage out again. So we have a big churn in staff within advocacy, in addition to having –so we need to be able to hire more and retain them. 

MS EASTMAN: And, Frederikke, can I come to you in terms of VALID's experience in navigating service systems. As I said this morning in opening, services are a very broad concept, and all aspects of people's lives include services. Some advocacy supports are to assist a person to participate in the community and access the broader service or general mainstream service systems. Some are for the specialist services around disability, and there's a little bit of a sort of grey area, isn't there, in between. How does VALID navigate these different settings and then the service systems that regulate –that are regulating both mainstream and disability service systems, systems that really require some detailed understanding and mapping of where to go and who does what and the regulatory arrangements? 

MS JENSEN: It's difficult. And because of the clients that we support, we see how they fall in between mainstream services in hospital and, you know, in NDIS. And quite often, it's a fight about who should pay. So, for advocates, it requires a lot of time and effort and trying to lobby and argue, and the clients are the ones that are suffering because sometimes they are stuck in hospital for a prolonged time or they are stuck in, you know, prison or treatment facilities because NDIS are not always wanting to pay and they say, "No, that's Justice who needs to pay that, or it's mental health.” 

And in the end, it's the client who suffers. And, you know, as a society as a whole, like, you know, it's probably more costly to keep somebody in hospital compared to giving them adequate support, you know, in a home. And it is –it is time consuming and it's –you know, we sometimes feel we bang our heads against the wall. But, like, we keep –keep trying. And I would also say some of the skills that are needed in that area when you do advocacy, navigating those complex services and the service gaps, is that you need good influencing skills. You need to try and lobby and create allies where you can. Yes. 

MS EASTMAN: I want to move to a topic which I think Kerryann has opened up, so I will follow the lead, which are some of the challenges experienced by advocates but also advocacy organisations. And some of the matters that have come to the Royal Commission's attention are the issues around funding and the limitation on resources, the fact that there are very long wait times and that there is unmet demand –sorry, unmet resources to meet the demand for advocates. Another area which is close to the topic which we've touched on about accessing people in group homes is the relationship that advocates have with service providers and navigating that relationship. 

The next is raising awareness among people with disability about advocacy services and their rights, and then the issue of vicarious trauma, being overwhelmed and the burnout for advocates. I will just put funding to the end, but I want to start with the relationship with service providers. And I would welcome anyone on the panel, without identifying the service provider, to tell me if you have come across a service provider that has had a clear policy inviting and welcoming advocates into the service on a regular basis. Have you seen any good practice of that, Cathy? 

MS MILNE: I have been doing this a long time and in a similar geographical area, which makes a difference. A lot of this work is on connections and trust. And so we decided to focus on that during the Royal Commission project and did very deliberative outreach and made it really clear that it wasn't about soliciting complaints against them. Kind of by the time you got your foot in there gently, it was sort of well underway. But we have noticed trends with some service providers in our local area where they are recognising the particular vulnerabilities of people who might not have unpaid relationships in their life, and they are proactively referring those clients for advocacy support before there's an issue. 

Now, where the challenge comes in, when we are overwhelmed with demands for advocacy for people who have been stuck in hospital for six months because one Commonwealth agency is disagreeing with another Commonwealth agency about who should pick up the bill, it's very hard to find the space to provide that proactive advocacy where we are getting to know someone when they are in a good place so that we can then support them when they are not in such a good space. 

So, yes, there are some organisations that at a very top down level have made that conscious decision and built it into policy. And I think it really needs to be from a top down level because, historically, I've seen lots of service providers where you have amazing frontline staff who when they step out to do that are penalised for it and –to the extent of incredible frontline workers losing jobs or being reallocated because of it. So it's really these top down moves that are allowing it to –

MS EASTMAN: We are going to look at the issue of workforce. Is there a tension for a person who is a support worker and an employee of the provider to then step into the shoes of also being the advocate for the client, and does that create the tension? 

MS MILNE: It can do. And some of the work I've been doing is helping people to –in service provider roles to reflect on the fact that a conflict of interest might be role based. And so it's not about you as a person and your profession and your skill and your knowledge, it's about the role. There is sometimes just an inherent tension when you are within that same system. 

MS EASTMAN: Frederikke, can I ask you, have you seen any examples of good or promising practice where, from the service provider perspective, there's an openness and a welcoming of advocates to come into the organisation? 

MS JENSEN: Yes, absolutely. We do see some organisations that react quite quickly if they discover that something is not right in a specific group home, and they then will actually invite advocates in to deal with the case. And sometimes, you know, there has been –quite often they might come to us if there has been physical or sexual abuse, and they want to make sure that the person who has been abused gets independent advocacy. And sometimes those situations –it's actually ended up that, you know, the local centre for sexual assault has been invited in because we have made a further referral, and they come in and they educate staff about how to deal with a person who has been abused in a trauma informed way. 

So that's when things work right. But in other cases, you know, of course, they would rather sweep it under the carpet and not deal with it. And as it was said before, it really comes down to top management. So sometimes what we do as advocates, we actually go right to the top in the organisation. And unfortunately we have found that, even at the top, they don't quite understand what's going on below them several management levels down. So I really –you know, good management in disability service, you know, is paramount. 

MS EASTMAN: Queensland –have you seen any evidence of good practice in Queensland of service providers inviting or welcoming in advocates? 

MS WILSON: For the most part, yes. We try –because we are regional, we try to work as closely as we can, but always maintaining our independence, to have that good working relationship. A lot of our issues are only with maybe one or two clients of mutual clients where we try to work to figure out what went wrong, what procedures broke down and to build that working relationship to make sure the client isn't put in harm's way any more and they get what they need. And it also helps reinforce good practices for those service providers. And most of the time, it's well received. It's just those service providers that don't want to be held accountable, that don't think they need to be held accountable, where it is very hard to have our clients in a safe place. 

MS EASTMAN: I'm just keeping an eye on the clock. So I want to turn to another topic which is related to funding. One of the issues around funding is that to be able to do your jobs well, you need to be independent. So if you were funded by a service provider or other sources of funding, then that may well compromise the perception of your independence. So for the most part, advocacy organisations rely on a number of different funding sources from governments, but it may also be from donations. It may be from particular fundraising activities. And the funding seems to be a perennial and ongoing problem for organisations. And am I right in understanding that, for each of your organisations, funding is an issue? 

MS MILNE: Yes. 

MS HARMAN SCHUFFT: Yes. 

MS EASTMAN: And is it an issue that occurs on an annual basis, where each year you have to think about what are going to be the funding arrangements? 

MS MILNE: Sometimes six months. 

MS EASTMAN: So what are the sort of cycles in terms of that? We heard Sam Petersen say this morning that, for Sam, each year is a question of what would be the funding for Sam in the following year. Do the advocacy organisations also have funding cycles where it's either six monthly or a year? Cathy? 

MS MILNE: Generally the funding cycle –the service agreements are three years, but the amount that that equates to changes annually. But it's also subject to top ups or consent to roll over, because if you don't utilise the funding for whatever reason, it may be taken away. So there's a lot of disincentive for long term planning because there's just not certainty there and short term contracts which lead to loss of very talented advocates. We have lost two advocates this year because of funding cycle issues, and with them walks out all of the knowledge and expertise. But more than that, it breaks the relationships with the clients. 

MS WILSON: Yes. Can I just say, sometimes our funding renewals have been one year, two years, back to one year, 18 months. You never quite know. We have had funding where it's been three or four days before the end of the funding cycle that we actually get our new contract. As a business, how are we supposed to continue? We have staff that are constantly not knowing if they have a job from six months, eight months out. And you can't sustain a workforce, you can't be there to provide the best type of service for vulnerable people that need you on those –those timeframes. As I touched on, our service region, which is about a third of the state, we are also limited with the number of clients we are able to provide services for. Our funding is less than $1.2 million for 540,000 odd square kilometres. 

MS EASTMAN: How do you make decisions with that level of funding and the geographic territory that you have? 

MS WILSON: When you want to provide face to face service, it's very hard. And it's very hard to have that money, and you also have to have your administration overheads, your accreditation and everything else that goes with it. But you also have to try and reach people and let them know that there are advocates out there. A lot of people don't know. We have been going for 35 plus years. A lot of people still don't know there are disability advocates out there. So it is very hard. And when you get the people in, do they have capacity? Because we have four advocates. 

MS EASTMAN: I want just as the final matter –and I welcome each of you reflecting on your experience in doing the work that you do –is looking to the future and assuming that the funding issue will be an ongoing issue. Do you have any views about the way in which advocacy services can be both supported but also provided? And are there sort of innovative and new models that you think the Royal Commission should be looking at as it works towards its final report? Frederikke, can I ask you to start with that one, if you would like to comment on it? 

MS JENSEN: Look, I –we certainly would like to see –apart from the services that we already provide, you know, we would expect, you know, that there was more funding given to pilot projects sort of, you know, involving client voice. VALID did a project last year with people involved in the justice system and, you know, also some follow up from some of those project outcomes. But we would like to see more projects like that, that involves, you know, collaborative practice, listening to what people have to say and then, you know, working from that to make some social change. 

MS EASTMAN: Deborah? 

MS WILSON: I think, staying on the funding part, is we have so much data reporting, but there are some aspects of our work that isn't reportable. Reading reports is unreportable time. If you don't read a report, you can't give your client clear instructions and options. Travel is not reportable. If you are able to travel to meet a client face to face, which is preferred, you can't record that time. If you didn't have the client, you wouldn't be travelling. So there are –it just seems common sense that these aren't administrative tasks. They are there for the client. To read a report, it's a basic necessity. 

MS EASTMAN: Kerryann, you have been on the government side as well, and a policy side, and so perhaps got a window as to the challenges for governments in these areas. 

MS HARMAN SCHUFFT: Well, I will be honest right up front, which is –

MS EASTMAN: So what would you like to say on this topic? 

MS HARMAN SCHUFFT: –I just think the peaks have let us down a fair bit. I would expect the peaks to be sorting out these problems with the Commonwealth and the state re reporting. We have to report quarterly to the Commonwealth and monthly to the state. The level of reporting to the state is extraordinary detail in Queensland. It's just input and output, output, output, output. There's no outcomes. It's really a big worry. Someone should have been negotiating longer funding cycles, larger grants, simplifying acquittal, and somebody should have been sorting out the fact that, in fact, nobody is advocating for the advocates. Who is advocating for the advocates in all of this? I can't see anyone advocating for the advocates. 

The advocates are running themselves really close to burnout on the ground. They are tired. They are underfunded. They are under-resourced. And when you look at the numbers in Queensland, in fact, we have got less than 120 FTE trying to cover the whole state with the problems with –that the Royal Commission has uncovered re advocacy. It's totally inadequate. So we are –the peaks are writing very nice reports about the need for advocacy, but where is the report that says the funding is totally inadequate? Totally inadequate. And we are doing it on the backs of advocates who –some organisations insist you call the people you are working with, people you are working with. You imagine how laborious that is in a report or an email or anything else. They're clients. I am a paid advocate. I am not a philanthropist. I may be paid poorly, and the conditions of pay are very bad, but, I mean, they are clients and they have got a right and should have an expectation of a real quality of service from us. 

And I think the whole sector needs uplifting, everything to do with it. We need boards that are really highly skilled, as well as lived experience. We need CEOs that have lived experience and skills. We need –I think we need a peak organisation for advocates, someone who controls who enters and argues and represents on their behalf and makes sure that we are not lost in the mix. Because at the moment, we seem very expendable. Like, there's a grant out, let's hire six, the grant is about to end, let's get rid of the six, let's get another six, let's get another five. We don't retain the people who have developed the skills and have all that tacit knowledge. It's lost all the time, haemorrhage, haemorrhage, haemorrhage. I would have expected the peaks to do something about that. 

MS EASTMAN: Cathy, any final observations for you on thinking about models and different ways into the future? 

MS MILNE: I will try and be quick. There's a couple of things. The first is to recognise the need for long term engagement. Many of the people I work with have lived decades and decades of life not even conceiving of their experience as abuse. That issue doesn't get resolved quickly. It takes time to build trust and communication, and they need to be able to engage at their open pace. That feeds into sort of some of the funding issues. And people's lives aren't segmented. I think –picking up on the difference of funding between state and Commonwealth, the person I'm working with doesn't give two hoots which level of government is responsible for overseeing something. That's irrelevant to their life. It should be irrelevant to my advocacy. 

Advocacy is about, to me, where things aren't working the way they should. And one of the biggest ways things aren't working is this notion of streamlining and efficiency and segmentation, and that's not navigable for anyone in crisis, least of all someone who has different support needs. And so much of advocacy at the moment is being deployed to things that should already be fixed. I was working as an advocate in New South Wales when Disability Services fell under Family and Community Services, which also encompassed Housing and Health. There were memorandums of understanding. The lines weren't always right, but there was at least a framework to work with. 

Now, all of those seem to be thrown up in the air and nothing has replaced them. And so there are hours and hours of time that I would rather spend doing supported decision making that I'm spending convincing a housing provider that they have a responsibility for some of it and NDIS that they have a responsibility for other parts of it. That's a waste of my resources. Someone in a government agency should be working with someone in another agency negotiating an MOU, because this is a systemic issue. But when it comes to my lap, it's not a systemic issue. It's the difference between someone living in their home or ending up in hospital for six years –for six months before being forced into a nursing home prematurely. The gap is too big to address at an individual level, and it shouldn't be. 

And there's no room to move in this system. We have had to turn away people who were homeless because of domestic violence who were seeking disability advocacy because domestic violence services were at capacity. How do you deal with this? It's –you can't help someone navigate a system that's broken. And there was so little give in the system before COVID. There's none left. And digital first doesn't work. It's not accessible for everyone. It's –I spend too much time waiting on hold to be told, "Do it in an app.” I –sort the system out. You know, there will still be plenty of work and unmet met need for advocacy, but you wouldn't be wasting resources trying to tread water to stop or lessen the horrendous, horrendous abuse. I had coherent things to say. I went off track. 

MS HARMAN SCHUFFT: Well said. Well said. 

MS MILNE: Advocacy should be able to be proactive. When crises crop up, there should be ways to escalate and get people who can actually make decisions talking. I shouldn't be trying to game a complaint system to try and get someone who has a safeguarding jurisdiction to notice. Yes. 

MS EASTMAN: We, Commissioners, can probably cover a lot more issues. We have covered a lot of ground in a very short period of time. I know the Commissioners might want to have a question of you. Is there one more  

MS HARMAN SCHUFFT: There is one thing, and it leads on. I'm just wondering, when there is special categories funded for disability advocacy, why we still stick to First Nations and culturally and linguistically diverse. Why we haven't, in this day and age, added domestic and family violence into that category, given that we know that people who have a disability have about 1.8 times incidence of family and domestic violence. So, like, why? It seems like a no brainer to me. Aren't we meant to be, you know, covering this problem across all aspects of policy?

MS EASTMAN: Well, that's on the Royal Commission's radar and the work that the Royal Commission did last year in Public hearing 17. I will just now ask the Commissioners if they have any questions before we conclude, and I know we have run a little over time. 

CHAIR: Yes. Thank you. I will ask Commissioner Bennett first. 

COMMISSIONER BENNETT: Thank you for your evidence today. I don't mind who asked this question, but one of the observations I have is that there are numerous advocacy groups which might be established either geographically or they are established to deal with a nature, either the nature of the individual's disability or the nature of the issue in which they may have remit. Does that also add a complexity for the client to find the right advocate to go to and also then the right type of funding for the agency? Is there a more innovative approach rather than the historical way in which you may have evolved that gives you that specific remit? 

MS WILSON: As an example, our advocacy organisation and funding –we do everything as we now call general NDIS appeals, DRC. Over our whole entire region, we can't provide every type of advocacy because we are not funded for DRC and appeal work in certain areas. And it makes it hard. And if we are advocating for someone over just a general advocacy issue, we have to say, "Sorry. If you then have an NDIS appeal, you have to go somewhere else because we are not funded.” But no one –or the organisation that's supposed to be funded for that region, they even know about. 

For example, I will go into our region, and I will promote everything, everywhere, even if we are funded to or not, because the people don't know about it. The people didn't know about the DRC Royal Commission. They didn't know about the NDIS appeals. So I have to tell them to go somewhere else because that is the organisation they are supposed to be dealing with, but they never see them. They never hear from them. So are we supposed to just leave them go because on a map they are on a different postcode or different line –different geographical area? We don't leave them in the lurch. 

MS HARMAN SCHUFFT: If I could add to that, there is a network of independent disability organisations in Queensland, QIDAN it's called, and my understanding is they were funded to put together a –basically a phone line where you could get referral to a disability agency. The truth –in the organisation, the truth is we are all at capacity all the time. We have got these people out there with huge unmet need. They are just ringing around. They are ringing all of us all the time trying to see, "Can you help me? This is my story. Can you help me?” "Sorry, we can't help. Try this organisation.” 

You know they are not going to get in anywhere. There is no capacity in the system. And people know there is no capacity in the system, but we are still playing this game of pretending there is capacity in the system, and there isn't. And we recently lost a really good intake officer, a fine young woman, to vicarious trauma, because her job was listening to these stories all day, every day, and saying, "I'm sorry, we can't help you. I'm sorry, we can't help you.” There must be intake officers like that all over the place. 

MS WILSON: We have exactly the same, and that's why our self advocacy work is so important –our support work, just for even general everyday inquiries that may not be an advocacy issue. People don't know where to go to get disability services. So our role –what we see our role is to help these people in any way we can to provide them with the information they need to put them in the right direction. Only making one more phone call if it's outside of our area or not an advocacy issue so they don't have to keep retelling their story and people get sick of it. People give up and they don't continue. 

COMMISSIONER BENNETT: Thank you. 

CHAIR: Commissioner McEwin? 

COMMISSIONER McEWIN: Thank you. I have one question. Frederikke raised the issue of –or the tension between the NDIS and hospitals and the barrier to individual or advocacy support. So I will direct my question to all of you. What do hospitals need to do or what do they need to change to enable access to advocacy? 

MS WILSON: I think they need to allow support workers to go in there and support their client while they are in hospital. And also –we have one at the moment where our client has been in hospital for nine months because they are trying to fund –the NDIS are trying to fund a proper bed. How hard is it to say, "This is what he needs," and get that bed so they can go home? 

COMMISSIONER McEWIN: What do hospitals need to change? What is the structural change there? That was my –

MS JENSEN: I think –

MS MILNE: In my experience, hospitals are fairly –can be very good at referring to advocacy. Often the blocks are to do with discharge planning pathways. So while there are issues in health, particularly around clinicians understanding the Guardianship Act and decision making and things like that, generally the issues come up in hospitals because there's no pathway out and they are under pressure. So memorandums of understanding and some kind of pathway out of an acute ward is, I think, one of the things that's really missing that causes those problems. Because, of course, an acute ward is going to be getting –shall we say wanting to get someone out of a bed. That bed is not needed for a person with disability who is medically fit for discharge. But a nursing home is not the right answer either, especially if that nursing home can lead to legislated eviction from the NDIS. 

COMMISSIONER McEWIN: Thank you. 

CHAIR: Ms Wilson, I think, said that the budget of your organisation was 1.2 million and you had four advocates. I'm just interested in what the budget is for each of you and how many advocates you have. 

MS WILSON: Sorry, I missed that last part. 

CHAIR: You answered the question. You said you had a budget of 1.2 million and four advocates. I'm just interested in the other members of the panel, what your budget is and how many advocates you have. 

MS HARMAN SCHUFFT: I probably don't have capacity, but I don't know our budget, the actual dollar number. I do know that we have got 2.6 FTE DRC advocates. We have two  

CHAIR: FTE being full time equivalent. 

MS HARMAN SCHUFFT: Full time equivalent. Yes. Two full time equivalent NDIS appeal advocates and 5.6 FTE individuals. Admin is 3.2 FTE, which, if you look at it, ends up around about 23 per cent. It is – takes a lot of resource to acquit these grants and to actually acquire them. It's ridiculously complicated, the reporting, and particularly when we have got such a huge unmet need. As I said before, I'm just amazed it hasn't been sorted out by peaks in consultation with the various governments, plural. 

CHAIR: What about VALID? 

MS JENSEN: Yes, look, we have certainly –we have got three advocates at the moment, and we have got less than the figure just mentioned, without going into detail. And I think what's not really recognised from funding bodies is also the work that goes into supervision. It's not just client work. If you have –if you meet –well, if you want to do good advocacy, you also need to supervise your team and give them the opportunity to reflect on the work that they do to improve. So I think it –that part is sort of not recognised, and sometimes it can also just be difficult to make everything work in terms of who you can actually recruit in terms of a full time positions or part time positions. So that's something –when we have got a certain figure that's not too large, then, yes, you have to work that out as well. It can be a bit of a puzzle. Yes. 

CHAIR: One more. 

MS MILNE: I'm a frontline advocate, so I'm not 100 per cent across our budget. But I know at the moment we have got 3.6 full time equivalent advocates. It fluctuates hugely. 

CHAIR: All right. Thank you very much and thank you for your contributions today. As with your previous contributions, it was very helpful, and we are very grateful to you for coming to the Commission and explaining the challenges that you face. I thank you very much. 

<THE WITNESSES WITHDREW

MS EASTMAN: Thank you, Chair. Could we adjourn until 2pm Queensland time? 

CHAIR: Yes. Maybe 5 past 2, then we will come back. Thank you. 

<ADJOURNED 1:15 PM 

<RESUMED 2:08 PM

CHAIR: Yes, Ms Dowsett. 

MS DOWSETT: Thank you, Chair. This afternoon we have a panel of service providers and we will be discussing the topic of choice and control. I will just begin by making some introductions. 

<ANGELA YEE, CALLED

<KATE MacRAE, CALLED

<DONNA SHKALLA, CALLED

CHAIR: Just before you get to the introductions, I understand there may have been an appearance to be announced for UnitingCare Queensland. Is that correct?

MR McKENNA: Thank you, Commission. May it please the Commission, my name is McKenna. I'm instructed by MinterEllison and appear for UnitingCare Queensland. 

CHAIR: Thank you, Mr McKenna. And I assume there are no – we had an appearance announced, I think, have we not, for Scope?  Yes. All right. Thank you. Yes. First of all, thank you very much to each of you for coming to the Royal Commission to give evidence at this panel. We are grateful for your assistance. And I understand that you have each taken the oath or affirmation as the case may be. So I will now ask Ms Dowsett to make whatever introduction she wishes to and then to ask you some questions. Thank you. 

<EXAMINATION BY MS DOWSETT

MS DOWSETT: Thank you. And I extend my welcome as well. So if I can begin, I will ask each of you in turn your name, your role and a little bit about your organisation. So, Ms Yea, if I can begin with you. You are the chief executive officer of the Supporting Independent Living Co operative? 

MS YEE: My name is Angela Yee. 

MS DOWSETT: Yee. Apologies. 

MS YEE: That's okay. I am the chief executive officer, the CEO, of Supporting Independent Living Co operative. 

MS DOWSETT: And we can refer to that as SILC, S I L C?

MS YEE: That's correct. That's correct.

MS DOWSETT: And you have been in that role since 2019? 

MS YEE: That's correct. 

MS DOWSETT: And SILC currently has 26 participants, all in New South Wales? 

MS YEE: At the time the information was requested, we had 27 participants. Three have since left. And we are a disability accommodation provider in New South Wales, correct. We currently have 12 accommodation models – family run accommodation homes. 

MS DOWSETT: And you are a registered NDIS provider? 

MS YEE: We are – yes. 

MS DOWSETT: And you are also registered with the Australian Charities and Not for profits Commission. 

MS YEE: That's correct. As a – and we are also a co operative. 

MS DOWSETT: And you report your annual – you make annual reports to the ACNC? 

MS YEE: That's correct. 

MS DOWSETT: And in the 2021 22 financial year, SILC reported an income of just over – in excess of $10 million. 

MS YEE: That's correct. 

MS DOWSETT: $10,604,032. 

MS YEE: That's correct. 

MS DOWSETT: Thank you. Turning then, if I may, to you, Ms MacRae. So you are the chief executive officer of Scope. 

MS MACRAE: That's correct. 

MS DOWSETT: Now, when Ms Eastman was giving the opening this morning, she referred to Scope Australia Limited, and we are referring to that entity, but Scope has some component parts. 

MS MACRAE: That's correct. 

MS DOWSETT: And they are Scope At Home. 

MS MACRAE: Home At Scope. 

MS DOWSETT: Home At Scope. And if you could just briefly explain what Home At Scope does. 

MS MACRAE: So Home At Scope is an accommodation element of Scope Group, and Scope – Home At Scope came across to Scope in 2019. And we were a transfer partner for the Victorian State Government. So 220 homes – group homes came across from the State Government that had previously been run by them. 

MS DOWSETT: And there is also another part, DSA? 

MS MACRAE: Yes. 

MS DOWSETT: And that's Disability Services Australia? 

MS MACRAE: Australia.

MS DOWSETT: And that's another entity that came to be part of Scope? 

MS MACRAE: That's correct. In December 2021. 

MS DOWSETT: And, sorry, I missed out when I was saying you are the chief executive officer. You have been in that role since April 2022? 

MS MACRAE: That's correct. 

CHAIR: Sorry. Could you perhaps just clarify for us. When you say the two entities that you have mentioned are part of Scope, what does that mean? Is there a corporate structure and they are subsidiaries, or is it some other mechanism? 

MS MACRAE: So Scope itself is an original organisation, and it's 75 years old now. And it's an entity unto itself. Home At Scope  

CHAIR: An entity unto itself in the sense that it is a corporation? Right. 

MS MACRAE: And then Home At Scope came across as a transfer partner. And then we acquired Disability Services Australia. They had gone into voluntary administration, and we acquired them in December 2021. 

CHAIR: When you say you acquired "them", that also is a corporation that has been now controlled by the parent entity? 

MS MACRAE: That's correct. 

CHAIR: Have I got that right? 

MS MACRAE: Yes. 

CHAIR: Thank you.

MS DOWSETT: And so the response that has been provided to – a notice to give information is provided by Scope Australia Limited but incorporates those subsidiary entities?

MS MACRAE: Yes. 

MS DOWSETT: And so Scope as a whole supports 5,433 participants. 

MS MACRAE: That's correct. 

MS DOWSETT: And in the 2021 22 financial year, the ACNC report for Scope was $104,845,000. Is that correct? 

MS MACRAE: I would have said that that was for one of the entities, not for all of the entities. 

MS DOWSETT: Okay. Do you happen to know? 

MS MACRAE: The revenue for last year was just shy of 500 million. 

MS DOWSETT: For all three entities. 

MS MACRAE: For all three entities. 

MS DOWSETT: But the participation rate for 5,433, that's all of the entities? 

MS MACRAE: That's correct. That's correct. 

MS DOWSETT: And as a whole, Scope provides Supported Independent Living  

MS MACRAE: Correct. 

MS DOWSETT: – in SDA – in Specialist Disability Accommodation, support coordination, communication services, mobility services and day and lifestyle options. 

MS MACRAE: Scope Group also – as the whole entity, we have allied health and we also have Disability Employment Services as well. 

MS DOWSETT: Thank you. And now if I could just turn to you, Ms Shkalla. Have I – 

MS SHKALLA: Shkalla. 

MS DOWSETT: Shkalla. 

MS SHKALLA: Yes.

MS DOWSETT: Thank you. My apologies. 

MS SHKALLA: That's all right. 

MS DOWSETT: So, you are the Group Executive, Family and Disability Services, UnitingCare Queensland. 

MS SHKALLA: That's correct. 

MS DOWSETT: And you have been part of UnitingCare since 2014 and joined the executive leadership team in 2022? 

MS SHKALLA: That's correct. 

MS DOWSETT: UnitingCare Queensland is a non trading entity. 

MS SHKALLA: That's correct. 

MS DOWSETT: It provides what's termed back office supports to a number of other entities? 

MS SHKALLA: That's correct. 

MS DOWSETT: And those entities include UnitingCare Community. 

MS SHKALLA: That's correct. 

MS DOWSETT: And the response that was provided to the Royal Commission in respect of the Notice to Give Information was on behalf of UnitingCare Community and UnitingCare Queensland. 

MS SHKALLA: That's correct. 

MS DOWSETT: And UnitingCare Community – now, if I just say UnitingCare, we all know what we are talking about? 

MS SHKALLA: That's fine. 

MS DOWSETT: UnitingCare Community provides support coordination; Supported Independent Living or SIL; Individualised Living Options, ILO; community access and participation; capacity building and skill development; speech pathology; and behaviour support. 

MS SHKALLA: That's correct. 

MS DOWSETT: Have I missed any? 

MS SHKALLA: The allied health component we are no longer delivering. And in addition to those services, we also run Beyond Borders Travel, which is a holiday program for people with a disability and the – sorry, and the employment service. 

MS DOWSETT: Right. And so, in the 12 months prior to responding to the Notice, UnitingCare Community provided support to 1,075 disability service users. 

MS SHKALLA: That's correct. 

MS DOWSETT: And also provided services to 6,500 early childhood approach users?

MS SHKALLA: That's correct. 

MS DOWSETT: UnitingCare is a registered NDIS provider?

MS SHKALLA: We are. 

MS DOWSETT: And you are registered with the ACNC? 

MS SHKALLA: We are indeed. 

MS DOWSETT: And UnitingCare reports to the ACNC as a group? 

MS SHKALLA: That's correct. 

MS DOWSETT: And so the figures that are on that website are for the whole of the group? 

MS SHKALLA: That is correct. 

MS DOWSETT: But for UnitingCare Community, you have given us those details in the response? 

MS SHKALLA: We have. 

MS DOWSETT: Thank you. Give me a moment. I shall get there. So, Commissioners, for your information, in the response, which is at tab 20 in the bundle, it's on page 14 at paragraph 16, and we see that the revenue there for UCC is $240,838,923. 

MS SHKALLA: That's correct. 

MS DOWSETT: And for the disability services component of that, of UCC, it is $62,070,007. 

MS SHKALLA: That's correct. Can I just also add the ECA is an additional 11,125,000, given we have referenced the early childhood approach services, in addition to the 62 million. 

MS DOWSETT: Thank you. 

MS SHKALLA: Thank you. 

MS DOWSETT: So with that introduction, I now want to turn to the topic of today's panel, which is choice and control. The first topic I want to address with you is choice and control under the group home or shared support model. And I will begin with you, Ms Yee. So just some terminology about SILC just to make sure we are all clear about what we are talking about. House operators are co operatives or other corporate entities formed by the parents or siblings of people living with disability. 

MS YEE: That's correct. 

MS DOWSETT: And are you aware of any house operators who have people with disability as members of the co operative or their board? 

MS YEE: Not at the houses that we currently have. 

MS DOWSETT: The next term I want to have is house manager. So is this somebody who is employed by SILC to manage the house, and do they live in the house?

MS YEE: A house manager is someone who is interviewed by the parents, with the person with disability, if appropriate, and a member of SILC to be employed to work in the house. They do not necessarily live in the house overnight, but they may deliver some active or sleep over shifts. 

MS DOWSETT: When you say the person with disability might be part of the interview if appropriate, when would it not be appropriate for them to be involved in that? 

MS YEE: When – it might be viewed that the parents are actually the best people to represent their views for reasons where it might be quite anxiety provoking for the person with a disability to sit on a panel. They may not necessarily have the questions that they know what to ask for. So as far as possible, where it is, we would love to include the person with a disability to be on the panel. But often in our homes, we – most of our residents are high complex support needs residents who have communication difficulty, autism being the primary disability. Most are on the complex pathway with the NDIA. And so that's all factored in the decision around whether or not the person would be best placed. And often we would gauge and work with the families to see whether or not it is going to be okay for them to be involved for some or all of the interview process, or none at all. 

MS DOWSETT: And does SILC have a role to play in supporting these people with disability to develop the skills to participate in some part of the interview process? 

MS YEE: As far as possible, absolutely, yes. 

MS DOWSETT: Back to terminology. Support workers and volunteers, these are the people who work in the house? 

MS YEE: Correct. Or alternatively, our house operators, who are parents, often volunteer their time to do work in the home as well. 

MS DOWSETT: And the final term is HOST or Home Office Support Team. This is SILC. This is the back office. 

MS YEE: This is the back office. And there is only a very small number of us. There is eight of us on the team. 

MS DOWSETT: And eight for 12 houses. 

MS YEE: And we do everything from managing and supporting the house managers, to HR, to employment screening, to NDIS registration, payroll, accounts receivable. Almost everything. 

MS DOWSETT: Now, in your response to the Notice, SILC explained how it goes about designing and implementing support and, as part of the design process, you have referred to the quoting phase. 

MS YEE: Yes. 

MS DOWSETT: And the response says that the quoting phase involved listening, understanding, collaborating and negotiating to ensure all parties can have their needs met. 

MS YEE: Yes. 

MS DOWSETT: Who are "all parties" in that sentence? 

MS YEE: In that sentence, it is the parents who are often representing the views of their children in a substitute or a supported way, or the siblings of the person with a disability who is coming into our homes, as well as SILC, being the NDIS registered provider. So we have regulatory needs that we have to meet as part of the registration. So we want to ensure that what is being asked of us by the parents can actually be delivered as well. 

MS DOWSETT: The house operators, the family co operative, do they come to SILC already formed or does a parent and a person with disability approach you and say, "We would like to develop a house," and then you do a matching process and find them someone?

MS YEE: Both. So most cases, people with disabilities already have – are connected with other people with disabilities, either through day program or through their school – and parents are connected as well for that same reason. And they can see that their child have, you know, engaged quite well with the person in the school environment or in their day program environment and will come to us and say, "I think this might be a really good match for my son or daughter. Really like working with this family. We would love to set up a home together.” And so what we would then do is try to understand where it is that they would like to live. Most of us would like to live quite close to our family members, not 80 kilometres away in a house somewhere where I don't know anybody in that area. So they choose the location where they want to live so that they can visit frequently as well. 

MS DOWSETT: And when they come to you, what steps does SILC take to test whether this arrangement is something that the person with disability wants, that the person with disability isn't able to exercise choice and control about who they are going to live with? 

MS YEE: What steps does SILC take to do that?

MS DOWSETT: Yes. 

MS YEE: In our – what we call our intake process or in the process of getting to know the person with the disability, we have a – what we call an "all about me" workbook, which essentially in other, you know, common disability language, is a person centred profile. It's really trying to understand from the person who – you know, how best to support them, how best to work with the person with a disability. But in terms of choosing flatmates, we often get the case where – and, again, because of the complexity of our residents, our families know their children best, and we absolutely take that view and that approach. And so when they come to us and they talk to us about what would work really well, we take the family's consideration with a view that this person might work well, to live together. 

However, we also do take on the views of clinicians and their day program, our practitioners who have worked with them for long periods of time. Many of our families are from a school in Sydney called Giant Steps. It's a school specifically for children with autism and then they transition into their day program. And so often we have people – young people with autism and their parents coming to us looking at setting up a home. We talk to the families, as well as their support workers who have supported them for a very long period of time, and the clinicians also at the school there to find out whether or not this could be a possible match. 

MS DOWSETT: On SILC's website, it says: 

SILC gives choice and control to family members because, inevitably, residents rely on them for their voice.

So is that what we are to understand is SILC's approach to choice and control, that really it's the families exercising choice and control and there is no clear part of your model that's about the person with disability exercising their own voice? 

MS YEE: Because most of our – actually, all of our residents, except for two, are in the complex – are of that high complex support need, when we talk about choice and control, there is a continuum that we look at, supported decision making and substitute decision making, and the supporters in the person's life to be able to help them make substitute decision making because they know the person's intentions and wishes because that's how they have supported that person throughout their life. So we do, at HOST, look at whether or not – on that continuum whether the person is able to exercise supported decision making and, if not, we move to substitute decision making for the person with a disability. 

MS DOWSETT: If I could turn to you now, Ms MacRae. Scope has told us in its response to the notice about arrangements for residents in homes who have – having Supported Independent Living, and you talk about two things, house meetings and house agreements, that I would like to ask more about. So house meetings are used to develop a house agreement about what's going to happen in the house, how the residents will live together. Is there an anterior step to deciding who is going to live together? When is that decision made and by who? 

MS MACRAE: I think our circumstances are really very different to SILC's. The majority of people that we support in SIL have come to us through government transfer. And many of those people, unfortunately, a large percentage, who were relinquished as children and were in institutional care and then they have come through the NDIS system and now working – we are working with them. So there is an enormous amount of steps in looking at how we can best communicate with our residents. I think communication is probably the key step there. So the people that we have currently living in our homes have lived there, as I say, for 20 or 30 years, some of them. For new people coming in, it's quite different. And for people who want to leave who are in their current situation, that's quite different again. 

MS DOWSETT: So the question was about deciding who is going live there. Let's take the new arrivals. I hear what you are saying about the historic circumstance. But a new arrival, who makes the decision about who is going to live in a house together? 

MS MACRAE: It's quite a complex process. So a person will come to us with their family, generally, looking for a place to live. I agree with Angela, the first thing they ask is where the geography is. They want to be close to their family. So the first part of working out where somebody can live is geography. Then it's looking at the type of house. If they need a robust build, it's actually much harder for them, obviously, to get a very specialised house. And then we are looking at do they have a particular desire to live in a female only house or a male only house or a house of young men. So it's that kind of very general matching initially that starts to really come down. 

Then when we get to thinking that we've got a good match – and a theoretical good match – it's all about house visits. It's all about having the person come to a home to meet with the other residents, for families to meet, to see what this feels like. Does it feel like a good place to live? Is this going to meet their needs? And what – what is the dynamic between the other residents? Unlike you, Angela, we wouldn't regularly get somebody who knew somebody that was an existing resident. They tend to be new people coming in. 

MS DOWSETT: That segues us nicely to house agreements. So these are agreements where the residents can have a say about how vacancies will be managed, how new housemates will be selected, and they also are able to deal with the provision of service within the house. Am I correct in understanding that? 

MS MACRAE: That's correct. 

MS DOWSETT: So let's start with vacancy management. If the process outlined in an agreement is that the residents will undertake these meetings and then they will have a vote, what's the process if there isn't a unanimous view about whether a new person should move in? 

MS MACRAE: We would generally have a system whereby somebody would come into a house for some extended periods of time to see if there was a match there. Similarly to Angela's cohort, 70 per cent of our clients do not use their voice to communicate. So understanding somebody's wishes in terms of is this person going to be a good match or not a good match takes time. And so the process is elongated because of that. It's not really a voting system. I wouldn't say that we have ever voted somebody to come in or come out. The factors would be that somebody would come for a barbecue, come for an evening meal. Families would meet if there are family involvement. They might come for a weekend. And then there would be discussion about how did that go. 

MS DOWSETT: And so in that discussion, if there are some people in the house who are saying it went well and there are many so people in the house who are saying it didn't go well, how do you deal with that? Does everybody have to think it went well before a decision can be made that that person moves in? 

MS MACRAE: I actually can't think of a circumstance where that's happened. So I'm really going to be – I can't think of a circumstance where that's happened. Yes. 

MS DOWSETT: Moving, then, to the provision of support. How are support workers, support providers, chosen in your model? 

MS MACRAE: Again, we have clients involved in the choice of the support workers coming in. If somebody was new coming into a home, we would probably initially try to find a match with an anchor disability support worker that's already in the house, and that's so that there's continuity, somebody knows the rhythm of the house, somebody knows the other clients really well. And then we look to see what the interests of the person are in terms of what they want. We have some clients who have written job adverts. We certainly have clients who are involved in finance. 

MS DOWSETT: And if I could now turn to you, Ms Shkalla. So UnitingCare says in its response that it is committed to having recruitment and selection of support teams managed by the disability support service users. 

MS SHKALLA: That's correct. 

MS DOWSETT: How does that work at UnitingCare?

MS SHKALLA: So the majority of the people that we support, we spend a lot of time with them to work out what are their needs, what are the requirements for staffing in particular. So from the outset, the conversation is around what is the best fit and what are the personality types, the motivation to be a support worker. Following on from that in the recruitment panel, we would engage both our disability support workers that may have a relationship, or the participant, in the recruitment of new staff. And that may also include family or guardians to be on the panel. 

A lot of preparation work would go into preparing people with a disability around what sort of questions they might want to ask, how they would ask those questions, how we would ensure that the person who is being interviewed is able to hear and understand the questions and interpret them and how we are able to then support a person with a disability to understand the responses from the person that we are interviewing. So there's a lot of preparation work that goes into a recruitment panel. It's not just something that we do lightly. And there may be several elements to that. So it may not just be one interview panel as we traditionally know an interview. It may be several conversations over a period of time that allow participants to gain an understanding of who potentially would be their support workers and to have an informed choice around who would be in their home. 

MS DOWSETT: When it comes to house rosters, is – firstly, is that a phrase that UnitingCare use? Do you speak of house rosters? 

MS SHKALLA: We talk about the roster of support. So for – right from the outset with people who are engaged in our services, we do develop a roster of support. So it's really a translation of understanding what are the funded arrangements that a person with a disability is requiring and what does that look like. So in that early stage, we actually have an understanding about the types of work, the times, the engagement. But really that is the basis of a conversation with the person with a disability through the communication means that we have available to us to ensure that people with a disability have the opportunity to engage in who is in their home at any point in time, doing what task, and that those tasks are – they form part of the level of support and the agreed support which stems from our support planning process. 

MS DOWSETT: I'm seeking to move from the support planning process into the delivery. And so if you have a number of people living in one of your houses, then there's a degree of shared support. Is that fair to say? 

MS SHKALLA: There are some. Yes, that's right. 

MS DOWSETT: So when it comes to working out what happens when in a house, what guidance or support do you – does UnitingCare give to its support workers about how to balance what we might refer to as routine and structure within the house – and by that I mean across the house and for the individual – with individual choice? So if there's a – you know, this period of time in the morning, everybody is, you know, getting up, having their showers, having breakfast. How do you work out what happens in that time slot? 

MS SHKALLA: So a lot of that is negotiated. We have a role called a lead practitioner role who is seated within the house structure. They are also a staff member who is on shift. And part of the role of the lead practitioner is really to guide the support workers in the day to day management of how the – how arrangements work. So from day to day, communication books and information is shared between support workers to ensure that each individual participant who lives in that house is able to have their needs met. 

It's important to recognise that, actually, we have small arrangements with maybe one or two participants in a house. So managing and balancing the arrangements for individual participants is important. There are some house arrangements determined by an individual-by-individual house. So there are some house arrangements where participants enjoy having breakfast together. There's others where they would prefer to have breakfast at different times. So those are the negotiated discussions that happen between participants, but also with the support work team, so that we are able to manage those routines to ensure that participants are – we are addressing their needs and it's driven by what they would like to see in their daily routine. 

And it's not easy, and it's complex, and there are times where there are competing demands, as there are in everybody's household. And it is really – the important part for us is around negotiation and really speaking frequently and collectively with the participants to ensure that we are able to balance those requirements. 

MS DOWSETT: Thank you very much. Ms MacRae – I will let you get your microphone back. 

MS MACRAE: Sorry. There we go. 

MS DOWSETT: So can you talk to us about how that balance is achieved in your model? 

MS MACRAE: I think it's actually incredibly similar. It is. Supporting somebody in their own home is a highly individualised exercise. There are days that are routine, that are predictable, and there are days that are not. And so I think it's about the – our support workers really understanding our clients at a very deep level. One of the things that I mentioned around communication and 70 per cent of our homes supporting one or more people who do not use speech as their means of communication, we spend an enormous amount of time and a great deal of training working out how somebody communicates their needs. Understanding when someone is agreeing, when someone is not agreeing. What's a yes, no. And building that up through keyword sign, through symbolic use. Just trying to all the time increase the level of our understanding of their preferred method of communication and building on their ability to provide answers back to us. 

MS SHKALLA: And then I would say that it's then an opportunity to utilise that, to ensure that we are placing decisions in the hands of people with disability and that supported decision making becomes the norm. 

MS MACRAE: It's in the fabric of a day. It has to be in the fabric of a day. 

MS DOWSETT: Ms Yee, I see you nodding. I was going to ask you, is it the same as SILC? I take that as a yes? 

MS YEE: Yes, absolutely. I think we go as far as – the way the funding is so individualised for each person, the roster of care which the agency uses to determine the funding, we recognise that is not actually what we need to roster to. The roster of care simply helps the agency determine what is reasonable and necessary for that person to receive in terms of their package of support. Then when they come to us, we take that funding and we ask them, "What does a day look like for you? What supports do you need? When do you need one to one? When can you receive shared support? What do you want to do during that one to one support? What are some of the goals that you want to achieve?” And we embed that as part of our service agreement with them, "This funding that we are claiming for you, which the agency has deemed reasonable and necessary for you to achieve these goals, this is how we are going to roster your supports to achieve these goals that has been identified by the agency.” So it's all in our service agreement and our agreement with our individual participants. 

But at the same time, it is complex because there are shared supports along the way. And it may be the case that with their own funding package, they can purchase everything that they have identified. However, when we bring three people into the house together, they may not be able to do that for whatever reason, staffing ratios or increased ratios elsewhere, whoever that might be. And so what we then do is bring our groups of families together at a table and we explain to them that, "Resident A, B and C would like to do this, and this is absolutely possible under these arrangements, but there are some parts where you need to share because there's actually not enough funding in the house to be able to deliver what is required.” And this is where the negotiating comes in. We facilitate – the families actually work it out themselves about, "Well, you know what, I don't actually need Johnny to go out from 9 to 5 on a Saturday with one support worker. He can actually come home by 3 and then have shared supports from 3 to 5. So that funding can actually go to Amber to do X, Y, Z.” So there's that negotiation there. 

MS DOWSETT: You mentioned in an answer earlier about the "getting to know me" workbook. 

MS YEE: Yes. 

MS DOWSETT: In that, there's a page that's about – or part 4 of the workbook talks about important decisions. And the final question is – the question is written there: 

Who makes the final decision? 

And you've told us elsewhere in your answer that there are seven service users currently, or at the time you provided the response, who were subject to guardianship orders. Is that number still correct?

MS YEE: That's correct. 

MS DOWSETT: Is it correct to say that other than for those seven who have a substituted decision making arrangement, that the final decision should always be the service user? 

MS YEE: That's correct. Where – as far as possible, yes. So with the seven, though, we were forced through our restrictive practice process in New South Wales to have to apply for guardianship for those individuals there because, without that, we could not get the restrictive practices authorised. 

MS DOWSETT: So I had understood that your answer said that you hadn't – you didn't make the application – SILC has not made any application. 

MS YEE: No.

MS DOWSETT: So when you just said then you were forced to make the application, you did not mean SILC made it. 

MS YEE: We did not make it. We had to – we went to the families, and we said to them, "In order for us to deliver this restrictive practice in the home for your child, we have to go through the process of asking you to get a guardianship order for your son or daughter.” So we did not apply on behalf – we spoke to the families, and the families went to NCAT to make that application. 

MS DOWSETT: Are there any other aspects of negotiating the system or navigating the system for which SILC has found a need to have guardianship orders or to request that the families get them? So you have talked about restrictive practices. Anything else?

MS YEE: No. 

MS DOWSETT: If I can ask each of you in turn. So to you, Ms MacRae, you have given us the details of the numbers of – sorry, I just need to turn it up. So you had 558 service users who are the subject of a guardianship order, but zero applications by Scope.

MS MACRAE: There was actually to be a correction to the table. 

MS DOWSETT: I do apologise. I have a note here that says you want to correct those figures. So please – Commissioners, this is in Scope's response. So it's tab 12 in the bundle, questions 8 and – 8 to 11. 

MS MACRAE: So we did want to make a correction to those – I think it was tables 9 and 10 in the 2022 submission. These tables provided the numbers of people we support who are under orders for guardianship or financial administration. The number submitted was underreported, and that was due to a limitation on central data that we collated. So they were understated. 

MS DOWSETT: So my understanding is that you are not able to provide us with the actual number because that would involve a manual count? 

MS MACRAE: Yes. When we submitted the details in 2020, we actually did a manual count at each house. 

MS DOWSETT: And is it correct that Scope itself has made zero applications? 

MS MACRAE: Zero. 

MS DOWSETT: Have you had an experience similar to what Ms Yee described, that you needed to ask somebody else to make an application so you can navigate part of the system? 

MS MACRAE: Not in those circumstances, no. 

MS DOWSETT: In other circumstances? 

MS MACRAE: There would have been cases, I believe, where – and instances where we felt that a client's needs were not being best managed with their current arrangements with family or friends, and we would go to Office of the Public Advocate there to seek their advice and they, in turn, may then take it through to a guardian – an independent guardian. 

MS DOWSETT: And, Ms Shkalla, to you, the information you provided, UnitingCare have 117 service users who are subject to a guardianship order. 

MS SHKALLA: That's correct. 

MS DOWSETT: There have been three occasions upon which UnitingCare have made an application. 

MS SHKALLA: That's correct. 

MS DOWSETT: But none of those applications were for the purposes of navigating the system. 

MS SHKALLA: No, that's correct. 

MS DOWSETT: You spoke a moment ago about the training that's provided to your support workers about how they can enable – how they can support decision making. You say in your response – you refer to something called the decision making tree. 

MS SHKALLA: That's correct. 

MS DOWSETT: Is that still in use? 

MS SHKALLA: No. Well, we kind of use it as a guide during our induction training. But really, the decision making tree was designed some years ago to really focus in induction training for our support workers and lead practitioners and service coordinators, that supported decision making is at the heart of what we do. So in order to really fulfil our duties and responsibilities around choice and control, we feel that enabling the staff to have the tools that they need to support participants to make their own decisions is critical. 

The decision making tree took some of the mystery, really, out of how to support a participant in making decisions and that it also provided an opportunity to talk through in a case scenario way during face to face training and induction where there might be some challenges, where staff may face a misalignment with their goals or their values or a misalignment with family decisions or a misalignment where decision making may well be more complicated. 

And so the decision making tree helps staff to walk through, okay, at what point would they potentially escalate a conversation to a lead practitioner or a service coordinator and at what point would it be a regular conversation with a participant every day in all that they do, from choosing what to wear in the morning to more complex decisions. How would that look for a support worker on the ground? 

MS DOWSETT: So you said it's not still in use, but the idea behind it – 

MS SHKALLA: Most definitely. 

MS DOWSETT: Do you have a copy of it there with you? 

MS SHKALLA: I do. 

MS DOWSETT: Commissioners, it's tab 25 in the bundle. I just want to put this proposition to you. This is about decisions being made by the support worker. It's not about supporting the person with disability to make a decision. 

MS SHKALLA: This is about – this is about an opportunity for support workers to – to be mindful and to be – to follow a process or follow some sort of thinking when they are supporting a person with a disability to make a decision. So it's not about the decisions that a support worker makes, it's about the decision that support workers enable participants to make. So it is part of – I guess it's not – it's not something that we currently use because we have updated, I guess, all our policies and procedures over the last few years to ensure that supported decision making is written actually throughout the processes, throughout all processes, from the entry to exit, to developing support plans. I guess what we really want to make sure is that our support workers understand how to utilise the skills that they have in order to support decisions for people with a disability. 

MS DOWSETT: I just – I want to – I'm going to jump ahead a topic and I will come back to service agreements in a moment. But moving on to the topic of service provider resourcing and staff training. So if I can begin with you, Ms Yee. I would like to understand what it is that SILC does to ensure that its support workers have the time that they need to enable supported decision making. We have heard each of you speak about it's not a quick process, it takes time. How do you make sure they have got that time?

MS YEE: I go back to the earlier panel members where – around the advocacy panel, and they talked about the importance of actually knowing the person and really having a good understanding of how they communicate to people, what are some of the verbal and non verbal cues that a person might indicate that they are saying yes or no, or they are agreeing, or they are demonstrating that they like or don't like something. So one of the things that we do to promote choice and control is actually for our support workers – they only work in the one house. They don't – we don't share our staff. Most of our staff are not shared. They are employed – and so what that then does is that the workers have a really deep understanding of the person with a disability and how they communicate, which then makes that interaction and – or finding out what it is that the person would like or not like much more quicker, so to speak, because they don't have to refer to a one page person centred profile or a file in the office. They know the person. They deeply know the person. 

MS DOWSETT: In terms of the practicality, the day to day, how long are rostered shifts? How much time has a person got to get through the things that will happen in the house that day? 

MS YEE: So this goes back to how we – how we ratio – the right number of staff, ratio, so to speak. So because of our high complex support needs residents, we are – we ensure that all of our residents' needs are met, as well as the admin support that's needed to run the home. So we roster according to that. So what we don't do is minimise face to face interaction to prioritise admin work. The face to face work is the priority with the resident. The other side of the things with the admin – that's handed over to the house manager to oversee. Incident reports are completed after the shift when the residents, you know, go to bed or whatnot, because we don't want to take away that face to face time that's important for the individuals to communicate and make those decisions. So I'm not sure if that answers your question in terms of how we deliver the supports. 

MS DOWSETT: Other than the admin time that you've described, are there any other constraints on making sure your staff have the time that they need? 

MS YEE: There is always constraints. Disability support work is, I think, extremely – extremely valuable and needed for our residents, but it's – there's a lot of compliance requirements there. So, yes, I – I might just – yes. Sorry, I've just drawn a blank. 

MS DOWSETT: That's okay. 

CHAIR: Can I – Ms Yee, as far as I'm aware, we haven't seen a structure such as the one you are describing. 

MS YEE: That's correct. 

CHAIR: I'm trying to understand how it works. 

MS YEE: Okay.

CHAIR: You have been saying – you have been answering questions, as I follow the answers, on the basis that SILC actually provides some services. But it doesn't, does it? 

MS YEE: We – yes, no, this is a very good question. 

CHAIR: Thank you. 

MS YEE: So the way that our model works is that SILC is the registered NDIS provider. 

CHAIR: Correct. 

MS YEE: We produce all the policies and procedures. We employ all of our staff. So they come under our payroll. However, the families – 

CHAIR: The staff are selected – the staff in the home are selected by the members of the co operative? 

MS YEE: That's correct. 

CHAIR: They are the parents. 

MS YEE: That's correct. 

CHAIR: You collect the money from the NDIS. 

MS YEE: That's correct. 

CHAIR: And that money is then disbursed through the co operative  

MS YEE: Correct. 

CHAIR: – to the staff members who provide the services at the coal face. Is that right? 

MS YEE: That's right. So we pay the staff their salary. 

CHAIR: But they are actually employed by SILC. 

MS YEE: That's correct. So we pay our staff. The outlet – at the outlet level, if that's what you want to call it, each of the houses, the parents run those houses with the support of us to make sure they meet the regulatory requirements. And then they step in to assist where – you know, say, for example, the house manager might say, you know, "I've got a staffing problem, performance management.” They will talk to the parents about it and then we will come in and we will help them with their policies and procedures in terms of how to best have those performance conversations. 

CHAIR: According to the document Family Governance Under SILC – 

MS YEE: Yes. 

CHAIR: – the house operators are non distributing co operatives. Is that right?

MS YEE: That's correct. Yes.

CHAIR: The family members are active members of that co operative. 

MS YEE: That's correct.

CHAIR: The board is comprised of relatives, in effect, of the person who is the resident. 

MS YEE: That's correct. 

CHAIR: SILC is the registered service provider, but it delegates responsibilities to the house operator, and those responsibilities include recruiting staff and the roster. 

MS YEE: That's correct. 

CHAIR: So you don't do the roster; somebody else do the roster? 

MS YEE: No. So the families do it with the house manager, but the house manager is SILC, so to speak. So –

CHAIR: In what sense is the house manager SILC? Isn't the house manager selected by the co op? 

MS YEE: Yes, but we are the employer. 

CHAIR: You are the employer, but effectively it's the parents running the show. 

MS YEE: That's correct. And I think this is the – and your question is a good one because, fundamentally, part of being a co operative, we cooperate and we work together to get those – to get the shared purpose and the common outcomes that we are trying to achieve. 

CHAIR: Are all 27 – did they come from house for Giant Steps? 

MS YEE: No. 

CHAIR: How many of the 27?

MS YEE: Sorry, just off the top of my head, probably – 27 residents. We have got 12 houses. So of the 27 residents, is that what you are asking? 

CHAIR: Yes. 

MS YEE: Possibly about 20. 

CHAIR: Right. 

MS YEE: Yes. 

CHAIR: Is there any formal link with the house for Giant Steps? 

MS YEE: Our founder, Steve Anthony, also founded Giant Steps. And when his son Patrick needed accommodation when he was 19, Patrick went through the process of a failed system where he was placed in a vacancy managed by a provider, living with people that he didn't know, absconded many times to try and get back to his parents who were 80 kilometres away. And so Steve founded Supporting Independent Living Co operative. 

CHAIR: Is there any – and I don't mean by this question to imply any disrespect to any parents or family members, but is there any commonality among the families who are part of what I will describe as this program? Do they share characteristics, such as socioeconomic characteristics?

MS YEE: Yes. An ability to – 

CHAIR: They are better off generally. 

MS YEE: Financially, yes. 

CHAIR: Right. 

MS YEE: To some extent. 

CHAIR: I'm not saying that's a bad thing, but I'm just saying that's part of the model, in effect. 

MS YEE: Yes. 

CHAIR: Yes. All right. Thank you. 

MS DOWSETT: Just picking up on your exchange with the Chair there, what if any guidance and support does SILC give to the house operators, the families, about how to discharge these delegated responsibilities and what oversight does SILC have of that? 

MS YEE: Ultimately, as the NDIS registered provider, we are responsible. Our board – our SILC board is made up of five directors, and we have gone from five parents who actually oversee our homes as being directors on the board to now – because our pro bono CEO had retired – he has now stepped down – there is now two independents and three family members. So I guess part of that means that the risk tolerance to having families run the home to meet the needs of their children is much higher. And I say that because what happens with risk and innovation is that when people are just purely focused on the risk, the innovation is lost. And so our board has a much higher tolerance to try things, to try things differently and let's do things differently, for the purpose of what is in our co op rules for people with disabilities to lead a good life. 

And so if we are – if that is the direction that we are heading in terms of our moral compass to – for people with disabilities to lead a good life, then let's try and innovate in the accommodation space to try and make that happen. And if that means – and we just recently had this discussion with one of the parents the other day. One of the dads wanted to stay with his son for a week. You know, is that going to be a good outcome for the person with the disability? Our answer is yes. But let's think through how – what are the types of things that we need to manage in terms of risk to enable this to happen, if it is going to be the best outcome for the person with a disability. 

MS DOWSETT: So my question was about the guidance that you provided oversight of. 

MS YEE: Sorry. Yes.

MS DOWSETT: And that was – it was very interesting but not the answer to my question. What guidance do you provide?

MS YEE: Yes. So each – so the guidance we have, our policies and procedures as a registered provider, our guidance in any of those policies is actually – the governance component is stipulated by our SILC board. That's why I digressed. So our SILC board – because it is made up predominantly of family members, they set the tone in terms of how our policies and procedures are written because they are open to that innovation and taking that risk. But also, I guess, the guidance is also working quite closely regularly – like, we have monthly, for some of our houses, board meetings where HOST is also a part of those board meetings to help understand any sort of governance issues that they are having in the home, operating issues. 

There's a designated operations lead to every single house. So right now, the ratio is one ops lead to three to four houses. And we won't deviate from anything more than that. Because that intimate knowledge that operations lead needs to have to understand the family dynamics, the – but also the will and preference of the person with a disability is so intimate that it could be lost if it's just one person overseeing 27 houses, for example. 

MS DOWSETT: We are running short of time, so I will try and compress this a little. Coming back to the topic of resourcing your support works and making sure that they have the time that they need, you both had the opportunity to hear what Ms Yee said. I will ask you first, Ms MacRae. Is there anything different that Scope does that you would like to add? 

MS MACRAE: In terms of support, we have one team leader per house, and that role is on the floor doing a shift or two shifts a week. We have a ratio of one quality business partner or practice guide across a number of houses as well, and they will come to provide support. But probably more importantly, I think, is the amount of training that we provide before disability support workers actually commence. And I think that that really helps alleviate some of the pressures of the day. There has certainly been a real shift from houses being passive where houses were just managed to houses becoming homes where the participants and the clients really dictate what is happening in that house. So I think the rhythm has changed. 

MS DOWSETT: And that training that you provide, has Scope conducted any evaluation of the training to ask your support workers, if they have done it, do they have what they need in order to enable decision making to support your service users? 

MS MACRAE: Yes, we have. We've got a project just now that's three years long, and it's called the Culture of Communication. And it is being developed by and co designed by people with disability, some of whom live in our homes, but not all. We have a Centre of Excellence that has 88 staff, and a quarter – no, 24 of them are people with lived experience. They have co designed this Culture of Communication initiative that has gone into over 200 homes. Individual staff were provided with up to 20 hours training in their first year, and that's then gone online to continue the knowledge. 

And we are really – and we have evaluated every six months, and the evaluation initially was based on staff perception. And we had a – quite an increase – I couldn't quote you exactly, but around 60 per cent said that they were much better able to understand people who did not use speech as their main form of communication. It's just been internationally recognised as the largest trial of its type in the world, and it is targeted particularly at increasing choice and control and aspirational goals for people with communication disabilities. So that's one of our flagship projects that we are very, very proud of. 

MS DOWSETT: If I can turn to you now, Ms Shkalla. Are there – in UnitingCare's experience, are there any constraints on making sure your support workers have the time that they need to enable decision making? 

MS SHKALLA: Yes. I think that, you know, we have all talked about training. We've all talked about the amount of time that we invest in training. And I think that our – the funding model is – does come up short in terms of the amount of hours that are required – that we think are required to enable the skills and the abilities. Because it's not just about the organisation's training or core training skills like communication and structured decision making, it's also about the training that's required to deliver the positive behaviour support plan, the training required to deliver component parts of the health plan. So that might include bringing in specialists from other parts of our sector in order to support support workers to be able to truly deliver against the plans that we agreed. So there is a constraint on the amount of hours, really, that are funded by NDIS is capped. We do find space in our rosters and we do as many creative things as we can to ensure that staff still get the training that we think is incredibly important. 

But I think your question isn't just about training. We also – we also expect our support workers to engage with families, to engage with decision makers, to co design the big and small steps that people with disability want in their support plan. We also – we are running a pilot at the moment to deliver Outcome Star, which is really looking at how do we measure the impact of the work that – that we do with individual clients. And that's a client led process. It's a very long and detailed process but a really effective process for people with a disability to measure what they have achieved and how they have achieved it and what the success is. So those are all additional elements to the day to day. But I guess we spend a lot of time making sure that we have a structure that facilitates that. Is that cost effective? No. Are we – do we want to say – in – that we are cost neutral? No, that's not the case. It is – we are – it does cost more to deliver high quality services. And we are prepared at this point to continue to do that, but financial viability is a question, I think, for most of us, if not all of us. 

MS DOWSETT: Thank you. I want to move on to the final topic now, and I will begin with you. And the topic is about transitioning out of group home – or shared support models. I want to begin at the individual level. Does UnitingCare see the group home kind of model as a point of transition, a way of building somebody up to move on – building up their independence so they can move on to a different form of living, or is it more that when they move into one of these style of homes, that this is where they will be – this is their home for life? 

MS SHKALLA: That's an individual response, depending on individual participants. So we do have participants who enjoy a shared arrangement, and actually that's their goal to continue to live in a shared arrangement and to develop other parts of their experience and lifestyle. There are participants who – their ultimate goal is to seek independence. I think independence is scaled according to individual participants' needs. And so there isn't one an answer to that question, you know.

But if a participant is seeking independence, then it's our duty and responsibility to support them and enable them to get to that point. And that requires, as I said earlier, co design. That requires a lot of intense considering, you know, what is the pathway?  What are the steps? You know, the immediate steps, the longer term steps. And all that work is with the person with the disability, it's not – and their support network, their families, their guardians, other professionals involved in their life. It is a comprehensive piece of work to really engage in a trusted and respectful relationship with people with disability for them to be able to seek their goals as they state them. 

MS DOWSETT: And is this something UnitingCare is doing now? 

MS SHKALLA: Yes, we are. 

MS DOWSETT: Ms MacRae, I see you nodding vigorously. So can I take it you agree with that answer?

MS MACRAE: I do agree. And at Scope, because we are bringing three entities together, we have really been examining this dilemma. And I think it is a dilemma for those providers that are operating in state owned homes. So the fabric of the buildings of the state owned group homes is poor, and we have started auditing the homes to look at – is the built environment suitable? About – I would say – and then looking also at whether it would be suitable for the next five years. We estimate almost 40 per cent of the current stock is not going to be suitable in the long term. So that really means that we do need to be looking at alternative places for people to live, which is a fantastic opportunity, especially for those that have been living in group homes for a very long time. 

MS DOWSETT: Does that provide you with an opportunity to look at the broader structural picture as well, if this is a model you want to continue to use? 

MS MACRAE: What we found is that when you go to individuals to actually ask them, "Do you want to move?" there are a percentage of people that say yes. It's as simple as that. Some people – and I would say most people that say yes, it is because they are geographically being displaced from their family. Under the old legacy system when they got the next available bed, and they were displaced 80 kilometres away. So we see that a lot. 

There are other people that will say that the built environment is no longer suitable, and there are others where we have really – we have to acknowledge that there is incompatibility of residents. We have people who have been placed together that are not compatible. So we have gone through an assessment of one entity, and we are going across assessment of the other two currently, and we have transitioned 74 people out of their old homes into new homes in the last year – a little bit less than a year. 

MS DOWSETT: Ms Yee, is there anything you would like to add to what the panellists have said, either at the individual level about supporting people to move to other places to live or at the structural level? Or does the question not really apply to SILC? 

MS YEE: I mean, I guess SILC does take a person by person place by place situation in terms of helping setting up homes. But I feel like with the – the missed conversation here is also with the legacy stock that has been available, is that people with disabilities may not actually be aware that they can actually apply for SDA and going through that process of applying for their own individualised funding and package for Specialist Disability Accommodation. So good providers will go down that path to help them individualise their SDA packages. Whereas I think there is a lot of people who transitioned historically from old existing group homes – legacy stock to existing places which don't have any individualised SDA package which they could potentially look and talking to other providers to build something specific for them. So there's another opportunity for choice and control, is the bricks and mortar of where you could potentially be living. 

MS SHKALLA: I just wanted to add and to clarify that at UnitingCare, we really don't hold the bricks and mortar. We have probably one or two houses that we own, which are managed separately in the organisation. The majority of our participants actually rent or own their own home or have some sort of agreement. So the bricks and mortar part of the equation isn't really something that we spend a lot of time on, apart from supporting participants in terms of their journey about if that's the right place for them to be or the right co tenancies or whether they want to look at an independent property. So we will support that process, but actually the bricks and mortar are not necessarily something that we spend a lot of time. 

MS YEE: And if I may just add to what SILC is doing, is that we have gone so far as the other side where we don't do it but the families are actually working with SDA providers to build and design their own homes to what a robust house could look like. So families are sitting in there about with the SDA provider, with the architect, going, "These are the sort of fittings that my son needs because we have tested, you know, these sort of light fixtures for so many years and he just breaks them. He needs something, like, to this standard.” And working with SDA providers to design something that is really purposeful for the person with a disability. And I think that's, again, another really great opportunity around, you know, whose voice is actually being presented at that table there. It is, in our situation, the person with the disability through their parents, through substitute decision making there. 

MS SHKALLA: And in UnitingCare, we have had participants who have sat at the table with the architects and designed their own home and moved to independent living arrangements supported by family, friends and unpaid supports. So I think it's – you know, it's a layering depending on the circumstances. 

MS DOWSETT: Thank you. Thank you, Chair. I am conscious that I have run over time, but those are my questions for this panel. I hand them to you. 

CHAIR: Thank you very much. Commissioner McEwin, do you have any questions? 

COMMISSIONER McEWIN: No. Thank you. 

CHAIR: Commissioner Bennett? 

COMMISSIONER BENNETT: Just the last point that was being made about knowing what their choices were, that they don't have to live in a group home or that they could live independently. Probably to you, Ms MacRae, because in your submission and in the evidence, you advise that one of the things that Scope also provides is support coordination. 

MS MACRAE: Yes.

COMMISSIONER BENNETT: Are they those individuals? 

MS MACRAE: No. So support coordination is – is for – is used for clients from other organisations. We don't have support coordination for our own clients. Similarly, our day services. There are only perhaps five per cent of the 900 people that attend day services throughout the year that are SIL residents. I think it is incredibly important that people's circle of support grows and grows and grows and isn't narrowed by their providers. 

COMMISSIONER BENNETT: So – perhaps the others – so you see the support coordinator who is critical for the individual to work out what is in their interest and which service provider might be the best provider. You don't do that. That individual does not work for Scope.

MS MACRAE: No. 

COMMISSIONER BENNETT: Right. And you see that as important so that there isn't a conflict? 

MS MACRAE: I do. I think there is a separation. There are some very specific disability types that might require specific disability support coordinators. I was CEO of Able Australia prior, and they were a deaf blind organisation. So you needed to be able to communicate with deaf blind knowledge. So that was very bespoke. But that's – yes, I think it – the separation is good. 

COMMISSIONER BENNETT: And is that the same with UnitingCare? 

MS SHKALLA: That is. And we have a separation of duties. In fact, it's not – we wouldn't have referrals into our own service. It is actually – supports coordination – would support individuals outside our service. 

COMMISSIONER BENNETT: So UnitingCare, the family of Queensland, is – does not receive funding for support coordination from individuals' capacity building of their program?  No one is funded to be the support coordinator? 

MS SHKALLA: No, not in disability services. So we have a separate service, which is supports coordination, which provides supports coordination for a number of people with a disability outside of the UnitingCare service delivery Supported Independent Living or community participation. So we don't refer between the two services. Does that make sense? 

COMMISSIONER BENNETT: Are they employees of UnitingCare? 

MS SHKALLA: The supports coordinators? 

COMMISSIONER BENNETT: Yes.

MS SHKALLA: Yes. 

COMMISSIONER BENNETT: Right. And is there – do you feel that – do you get more referrals from those support coordinators that are employees of UnitingCare? 

MS SHKALLA: No, no. The majority of – so the referrals that come into our disability services for Supported Independent Living or for community participation are generally from supports coordinators in other organisations. We would refer – for example, our supports coordinators are more likely to refer to other organisations for support for the participants that they are supporting. We – we actually – it's like there's – if you can imagine that we have created a Chinese wall between the two services to ensure that there is no conflict of interest and that the management of those services are held separately. 

COMMISSIONER BENNETT: And Scope – no employees are support coordinators – is that right – at all? Scope employees? 

MS MACRAE: I would be unable to say if there were none, but it is my understanding it is not a service that we provide to our own staff – to our own clients. Yes. 

MS YEE: Sorry, I was just to comment that we have one support coordinator, and he doesn't deliver any services to our residents. The support coordinator that we have is actually helping families interested in exploring home and living solutions and addressing that part of their NDIS goal. 

COMMISSIONER BENNETT: Thank you. 

CHAIR: Ms Yee, the delegation you referred to, of responsibilities to co operatives, is that a formal instrument? 

MS YEE: We have a house – sorry, the delegation for the co op? 

CHAIR: Yes. You have said that the responsibilities of your organisation, SILC, are delegated to the co operatives?

MS YEE: Yes. Well, there is what we call a house operator agreement. 

CHAIR: Yes.

MS YEE: And so when families or our corporate members have made membership with SILC, then we enter what we call a house operator agreement with the families. And in there, it articulates what is SILC's responsibilities and then what are the house operator's responsibilities. And the house operators can also delegate a lot of that responsibility to their house manager. 

CHAIR: I see. I don't want to know any legal or the substance of legal advice, but has this arrangement been the subject of being checked as to its legality? 

MS YEE: It has been, prior to me starting. 

CHAIR: All right. Okay. That's all I wanted to know. 

MS YEE: Yes. Yes. 

CHAIR: Thank you. All right. Thank you very much. Thank you very much for your evidence. It's been a very interesting discussion, and we thank you for your contributions to the Royal Commission. Thank you. What do we do now, Ms Dowsett?

MS DOWSETT: Thank you, Chair. If we could take a five minute adjournment to reconstitute the panel and bring on the last panel for the afternoon. 

CHAIR: The last panel will be?

MS DOWSETT: The human rights and – advancing and protecting human rights panel. 

CHAIR: Very good. Thank you. We will take a five minute adjournment. 

<ADJOURNED 3:26 PM

<THE WITNESSES ANGELA YEE AND DONNA SHKALLA WITHDREW 

<RESUMED 3:35 PM

CHAIR: Yes, Ms Eastman. 

MS EASTMAN: Thank you, Chair. We will move to the final panel for today, which we are going to focus on human rights. And you will see that Ms MacRae remains on the panel this afternoon. And she is joined by Ms Hayley Dean, the CEO of Melba, and welcome Jennifer Cullen back to the Royal Commission, the CEO of Synapse. 

<HAYLEY DEAN, CALLED

<JENNIFER CULLEN, CALLED

<EXAMINATION BY MS EASTMAN SC

CHAIR: Yes. Well, thank you, each of you. You have had a busy day, Ms MacRae. It is about to become even busier. Thank you very much to each of you for coming and helping us with the topic of advancing and protecting human rights. And in – I understand that you have each taken the oath or affirmation as the case may be. So I will ask Ms Eastman to introduce you and then to ask any questions she may have of you. Thank you. 

MS EASTMAN: Before doing that, Chair, I just want to make some introductory remarks to provide a context to the discussion we will have this afternoon. In the Royal Commission's interim report released on 13 October 2020, Commissioners, you said this: 

The CRPD articulates values and standards by which people with disability should be treated and informs community values and attitudes. The human rights framework assists in understanding why people with disability experience violence, abuse, neglect and exploitation and will inform the recommendations that we make. 

So, Commissioners, you have made it very clear that the CRPD guides the work of this Royal Commission and that your recommendations may include recommendations to better give effect to the CRPD in Australia. In that respect, the CRPD is international law. It imposes international legal obligations on the Australian Government. And as an international law, the CRPD, like all international law, generally does not impose international obligations directly on individuals, community organisations or corporations. 

In the Australian legal context, international laws do not become or are not treated as the law of Australia unless and until the Australian Government or a state or territory government takes the steps through their Parliaments to enact these laws into Australian laws. So translating the CRPD rights into Australian law is a step that's required before any of the obligations in the CRPD can be enforced, for example, in courts or tribunals. 

But of interest with the CRPD compared to some other international human rights obligations that Australia has is that the CRPD obligations are expressed in a way of ensuring that the Australian Government encourages private enterprises in respect of protecting and fulfilling the rights of persons with disabilities. Rosemary Kayess, the now chair of the CRPD committee, gave evidence at Public hearing 3. And in the context of human rights and living in a group home, Ms Kayess said that the CRPD should be a guideline to understand businesses and corporations, social obligations and social responsibilities, but also used for framing their internal policies and procedures in terms of equity, diversity and inclusion. 

At Public hearing 18 when you examined the operation of the CRPD, Counsel Assisting noted that very limited consideration had been given to how non government entities, such as corporations and service providers, have considered the extent to which they may have obligations under the CRPD to people with disability. So this panel provides us the opportunity to explore that question and examine how the CRPD and human rights apply in day to day delivery of disability services. 

So, Ms MacRae, you have remained here. In addition to Ms Dowsett's introduction in the earlier panel, I wanted to note that you are the founder of an organisation called The CEO Collaboration 90 plus. And that's 90 plus – is that right, 90 plus NDIS providers? 

MS MACRAE: That's correct. 

MS EASTMAN: And I wanted to ask you, what's the nature of The CEO Collaboration? 

MS MACRAE: The CEO Collaboration actually sprung out of COVID. So I had come from a health background and so I was very aware of what was happening in January of 2019. And when COVID hit our shores and we started to really see some impact, we – I had a phone a friend moment and I phoned some people that I knew in disability, and I phoned some people that I knew in health. And I said where are we as a sector in this? Who is helping us? It is not in the health response. Disability wasn't mentioned. 

So the phone a friend moment in – it was about this time in February, was one call. And by the next call, we had more CEOs joining, didn't we, Hayley? So Hayley joined. And it just kept blossoming, and it became a central focus of a call to arms of how we were going to respond to the COVID outbreaks, how we were going to get PPE, how we were going to get infection control, what protocols were we going to follow. Because there was really a gap at that time at a state and at a federal level, and we needed to do something really quickly. We recognised that we were supporting some of the most vulnerable people in the country and with – in – with very significant comorbidities for some, and we were particularly concerned around what was happening in homes – in group homes. 

MS EASTMAN: Sorry to interrupt. Did the work of this Royal Commission and the Commissioners' Reports for Public hearing 5 and Public hearing 12, which concerned COVID, form part of the considerations of The CEO Collaboration? 

MS MACRAE: The CEO Collaboration put in quite an extensive report with recommendations to the DRC at that time. Some of the recommendations were around having hospital outreach and extending it to residential aged care. 

CHAIR: Sorry. Can we just pause for a moment because of an interruption. Is it possible to address that? We need a few minutes, do we? Alright. I'm terribly sorry for that interruption, but at least it beats earthquakes and plague. Alright. We will adjourn for five minutes. 

<ADJOURNED 3:43 PM

<RESUMED 3:51 PM

CHAIR: I'm told that normal service has resumed. 

MS EASTMAN: Ms MacRae, just coming back to you, I think we were on The CEO Collaboration. I might leave that topic just because of the time. With respect to this panel, the documents that you have provided to the Royal Commission is the response to the notice to give evidence – sorry, to give information. You have provided a document, which is the NDS, the peak body's document called Human Rights and You e module workbook, and you have got another document called a Human Rights Checklist. And I think the Human Rights Checklist is not a document that your organisation uses. Is that right? 

MS MACRAE: We don't use it anymore, no. 

MS EASTMAN: So why did you provide that to the Royal Commission if you don't use the document? 

MS MACRAE: That document was provided in 2020, and I can't talk to – I'm sorry, I – it precedes me. I'm not sure of the reason for that. 

MS EASTMAN: But sometime between producing that document in response to the request from the Royal Commission about what are your current policies and giving evidence today, you have realised that the Human Rights Checklist, as it's described, is not a document that you use. 

MS MACRAE: That's correct. 

MS EASTMAN: Now, the origins of that document are actually to your neighbour sitting next to you. It is a Melba document. Is that right? 

MS MACRAE: That's correct, yes. 

MS EASTMAN: And so it was provided through Melba at some point in time. 

MS MACRAE: Yes.

MS EASTMAN: Right. So that leads me to you, Ms Dean. You are the CEO of Melba. 

MS DEAN: Yes. 

MS EASTMAN: You have held this position since September 2020. 

MS DEAN: Correct. 

MS EASTMAN: And you have 30 years’ experience in disability, aged care and community health sectors. 

MS DEAN: That's right. 

MS EASTMAN: And your roles over the years have been very much focused on board, strategic and operational leadership within organisations providing services in this sector. Is that right? 

MS DEAN: That's right. 

MS EASTMAN: Now, with respect to Melba, Melba was established in the early 1970s by three families who needed day support for their children with disability. And it's the case, isn't it, Melba, like many disability service providers, have the origins in the family established organisations which then grow over time. Is that right?

MS DEAN: Yes. 

MS EASTMAN: So Melba operates in Victoria? 

MS DEAN: Yes. 

MS EASTMAN: You have 1,500 staff. 

MS DEAN: Correct. 

MS EASTMAN: You support 1,100 people with disability. 

MS DEAN: Approximately, yes. 

MS EASTMAN: And the revenue for the financial year ending June 2022 was 131 million. 

MS DEAN: Correct. 

MS EASTMAN: So you have also produced some documents to the Royal Commission, including the response to the notice, The Melba Way – and I want to ask you some questions about that in a moment – a human rights policy statement, a personal outcomes measure and you have also included a human rights checklist. Now, that human rights checklist is not the same one that Scope has provided, but this is a more recent emanation of the checklist dated December 2021. Is that right? 

MS DEAN: That's correct. 

MS EASTMAN: And do you use the checklist in your organisation? 

MS DEAN: Yes, we do. 

MS EASTMAN: So I will ask you some questions about that. Ms Cullen, thank you for returning to the Royal Commission. And the Commissioners will recall that you gave evidence in your capacity as CEO of Synapse at the Royal Commission's hearing in Perth for Public hearing 27. 

MS CULLEN: That's correct. 

MS EASTMAN: And you – in addition to working as the CEO of Synapse, you are also a member of the NDIS Independent Advisory Council and the National Disability and Carers Advisory Council. Is that right? 

MS CULLEN: Yes. 

MS EASTMAN: And for those who may not be aware of Synapse and its work, Synapse is Australia's brain injury organisation. It's a large national organisation that supports and advocates for people with brain injury in Australia. And part of the areas of practice include disability service through the provision of the NDIS. 

MS CULLEN: That's correct. 

MS EASTMAN: But also research projects, community programs and initiatives, and also individual and systemic advocacy. 

MS CULLEN: That's correct. 

MS EASTMAN: Synapse is not an Indigenous corporation, but the nature of the way in which your work has developed and the people with disability who Synapse supports has meant that you do have a very significant presence in delivering services for First Nations people with disability across Australia. Is that right? 

MS CULLEN: That's right. 

MS EASTMAN: Now, you, I think, have provided to us a submission. You haven't given us a stand alone human rights policy, but you have spoken to that submission about the human rights approach. 

MS CULLEN: That's correct. 

MS EASTMAN: Okay. Well, thank you all for joining us. And I want to go straight to how the organisations approach and understand human rights. So all of your organisations have referred to the CRPD as an important tool in understanding human rights. But it seems, on reading the material, that you have slightly different ways and approaches in understanding the relevance of the CRPD to your organisations and the services provided. So, Ms Cullen, can I start with you. Is – reading your material, the CRPD is very much woven into the values in the way in which Synapse delivers its services, but it also incorporates human rights that are quite particular to First Nations people. So can I ask you, what's the philosophy and the approach in understanding human rights to the work Synapse does? 

MS CULLEN: Thanks very much. Before I answer that question, I wish to acknowledge the Traditional Custodians on the lands on which we meet today, and I ask the wisdom of the ancestors be with me. I also acknowledge the Synapse Elders, and our Aboriginal and Torres Strait Islander workforce have contributed to the development of the submission. I also acknowledge that Mr Adam Schickerling was endorsed by our Aboriginal Elders and our Torres Strait Islander employees to present today. However, I have been the one that has been called. As a result of that, I have gone back to the Elders and asked for their consent to speak on behalf as Adam was – as Mr Schickerling was not able to. So thank you. 

When Synapse thinks about human rights, when you go through our submission, you see the work that we are doing with Aboriginal and Torres Strait Islander people living with a disability. To us, it is about taking into account the United Nations Declaration on the Rights of Indigenous Peoples. That's what's most important for us, particularly Article 1 that talks about how the United Nations declaration follows all international laws and all international instruments in relation to human rights. Woven throughout our submission and the work we do with our people who are living with disabilities is that right to self determination and the right to actually have leadership over how we decide the way that we support our people who are living with a disability. 

MS EASTMAN: So very fundamentally in looking at the way in which human rights have developed for First Nations people has been linked to that concept of self determination and autonomy. The CRPD has come a little bit later, but that also has that very strong underpinning of self determination and autonomy, for example, in Article 12 of the CRPD. So what can we learn when we think about the right to autonomy for disability rights from the way in which First Nations people have approached the right of self determination? 

MS CULLEN: We listen to our Elders. Our Elders guide the work that we do. Today I sit here, as you said, as the CEO of Synapse, and I am very proud Aboriginal woman that is leading a really deadly non indigenous organisation. But in the work that we do with our First Nations people living with disability, I'm still a child. I have to get consent to speak on their behalf. All the work that we do – and in our submission, we spoke about the community living initiative – is the self determination as the autonomy of our Elders, our families, people living with disabilities, who decide how we will actually do what is called, in a Western way, disability support, led, guided, developed, analysed, all by our people. 

MS EASTMAN: I might come back to you on co design and inclusive design. But, Ms Dean, turning to you. The Melba Way reflects a series of values – and I don't know if you have got a copy of it, and you want to have a look at it. If not, I will – looking at the time, I will leave that. But the – what is The Melba Way? What's the purpose of that document and how do human rights inform the way in which The Melba Way has developed? 

MS DEAN: The Melba Way came about as a result of Melba itself way back in around 2003 developing guidelines for the delivery of supports within a human rights framework. And through the progression of the work that they did together with people supported and families, wanted a way to be able to actually describe what does that look like, both from a systemic level but also from a strategic level, but more importantly how does it look for the person that's receiving and purchasing supports from Melba. So it's a combination of our values. It's our practice framework, which is a human rights practice framework in that we only use human rights approaches, such as person centred active support, trauma informed positive behaviour support, and it's also about our Melba Charter, and that applies to every single person at Melba. 

So it's embedded throughout all that we do and guided by a range of policies, procedures and then different artefacts or documents and tools that we then use to be able to work with each individual to ensure that their human rights are upheld. All of that is documented in a way in The Melba Way. And as you will note, it is described through example because so much of it is around what we would consider to be doing the right thing. And doing the right thing is actually not as easy as people would believe, because everybody will bring their own set of values to work. So we want to make it very clear that the set of values that we work within are only human rights based values. 

MS EASTMAN: So that sounds great, and it very much frames human rights as a value that underpins. What's the next step to take those values and to look at the rights of people with disability, if we use the CRPD or we use – I think your organisation has regard to the Victorian Charter on Rights and Responsibilities. 

MS DEAN: Yes. 

MS EASTMAN: Those instruments set out rights, such as everyone has a right to privacy or everyone has a right to education or everyone has the right to an adequate standard of living or health. So the rights are set out that way. How does Melba connect the values to understanding these rights operating in practice in the way in which you deliver the services? 

MS DEAN: So that's done through a variety of mechanisms for each person that we support. It starts with our All About Me documentation, which is done together with the person to understand how they want to be supported and how they will direct their supports. We also, way back in 2004, looked to an accreditation system that was actually based on Personal Outcome Measures, rather than just policy and procedures, and we call that POMs. So each individual that lives in our Supported Independent Living environments receives the opportunity to actually work together with a person, with a planner, to understand what outcomes they want, how do they want to live their life, what's important to them. And those outcomes are actually the same outcomes that any one of us would want to enjoy to enable us to live our best life. 

Together with that, we also implement with the person a human rights checklist, the checklist that you referred to before. And what you have is the latest version of that checklist. So quite recently we reviewed the checklist, and it now has 64 questions. And that's worked with each individual and is overseen by a human rights committee, which we actually didn't produce as part of the notice to produce, but more than happy to provide those terms of reference. And that human rights committee oversees those restrictions, if there are any restrictions. 

MS EASTMAN: So I want to come back to that because I think there is two issues that we need to talk about in more detail, one is human rights and the limitation on rights through restrictive practices and the other is the reference to the human rights committee. So I want to ask you about that in a moment. So I will come back to that. So, Ms MacRae, in the response to the notice, Scope is – says it is committed to advancing the rights of people with a disability equal to those enjoyed by all other people in society and in accordance with Australia's obligations under the CRPD. So that's  

MS MACRAE: That's our constitution. That's our purpose. 

MS EASTMAN: Alright. So I want to understand when Scope says it's committed to advancing the rights of people with disability equal to those enjoyed by all other people in society, what does that actually mean? 

MS MACRAE: It means that the person that we are supporting should be able to enjoy the lives that we like. There should be no limitation placed by us on that life and that we are there to promote Choice and Control, preserve will and preference and work together so that that person's independence can improve and increase and that they can have a wider life. 

MS EASTMAN: Does the word "equal" there mean achieving equal outcomes or equal opportunities to people without disability? Does it draw in a comparative approach?

MS MACRAE: Thinking of actually an example that I only heard about last week was around equitable access to health. And we have been working with the Cancer Council for quite a long time, doing work in translation and making their information more inclusive. Part of that now has become cervical screening. So if you look at the health outcomes of people with disability, they are very poor in comparison to the general population. So with cervical screening, we are now looking at how we can implement that as cervical screening can be done by the woman herself. So I think from an equity perspective, it is about seeing those opportunities. We had another example recently where somebody said they wanted to vote, and they had never voted. So what do you need to do to wrap around the services to ensure that that person can vote? So it's looking at it from a systemic level but also at a highly individualised level. 

MS EASTMAN: So can I ask this for all organisations. So the CRPD is about a specific set of rights for people with disability that are over and above the sort of rights that might apply to all people. If you are taking an approach that you want to achieve equality to people without disability, how does that sit where you are providing specialist disability services and that model of equality is about inclusion in broader, mainstream or generic services? There seems to me to be a bit of a tension – 

MS MACRAE: There is a tension there. 

MS EASTMAN: – in how you are describing that. So who would like to answer that? And I'm interested in Ms Cullen's perspective on this from a First Nations, reconciling specialist services to mainstream services and that tension moving between those two worlds. So I would like all of you to address that. Who would like to go first? 

MS CULLEN: I'm happy to start. You are absolutely right about the tension, because there is a misunderstanding between human rights, the Convention and the United Nations Declaration on the Rights of Indigenous People. There is tension amongst all three. The reality is Aboriginal and Torres Strait Islander people with a disability in this country are some most marginalised and disadvantaged people. So when we talk about creating things to be equal, if you are at the bottom of the rung, it's more than about equity. 

And I think what we find in the work that we do constantly is that the systems that are there to support human rights often don't understand the historical context of colonialisation on Aboriginal and Torres Strait Islander people or understand, you know, the sociocultural constructs of Aboriginal and Torres Strait Islander people. So there's that inherent tension between what is considered rights and how you operationalise them for our Aboriginal and Torres Strait Islander way of being. 

MS EASTMAN: So, Ms Dean? 

MS DEAN: I think a very good example is the human rights checklist and why it's now 64 questions long, because it's about also individuals who have also been the subject of marginalisation, not enjoyed any rights at all. So, therefore, our responsibility is actually to not just support basic human rights, to actually go above and beyond. And, in fact, your example of somebody wanting to vote, that's one of the questions that we actually pose as part of the human rights checklist. So we actually take the Charter of Human Rights, using the Victorian Charter of Human Rights, and we apply it to each individual's particular situation so that we can actually work with that person to understand how they then can enjoy those rights. It is actually going above and beyond. 

And even though, yes, there is a tension because it's segregated or specialised or whatever terminology one would want to use, but that's because those individuals have not had the opportunity or been entitled to live a life that I may just expect. So our role is to go above and beyond and to actually break down those rights, apply it to each individual and how that then supports that person to enjoy those rights, whatever that may be. 

MS EASTMAN: Ms MacRae, anything you want to add to that? 

MS MACRAE: Just that I think we have an enormous opportunity as providers, if you recognise that we are looking at generational deprivation of opportunity for choice and control and decision making, and it is within our power to shift the power balance so that we are able to give our clients a voice, that we are able to understand the language that they are speaking – are using and elevate – elevate and amplify that voice. 

MS EASTMAN: So coming back to Scope's response to the Commission, the second part of the sentence was: 

...and in accordance with Australia's obligations under the CRPD. 

Was the reference to "Australia's obligations under the CRPD" deliberate in the sense that you're saying the CRPD creates obligations for – 

MS MACRAE: Substitute. 

MS EASTMAN: – Australia, Australian Government, separating that out from whether those obligations attach to Scope? 

MS MACRAE: I couldn't comment on that. It was 2018. I'm sorry, I couldn't comment. 

MS EASTMAN: Well, I said earlier that as a matter of international law, the CRPD is about obligations on a nation state and that exercise of translating those obligations into a domestic legal setting or policy setting is really a matter for government. But that doesn't mean that organisations can say, "Well, there is nothing that we need to do.” Organisations can voluntarily accept those obligations and seek to operationalise them and say, "These are obligations against which our conduct will be held and measured.” Is that what you're saying in 3.1? Is that Scope's view, that the CRPD imposes obligations on Scope? 

MS MACRAE: I believe that that is the intent, yes.

MS EASTMAN: And, Ms Dean, as you have been speaking, you have focused very much on the person, the beneficiary of those rights, and really getting a sense about what those rights mean in practice for an individual. But the flip side of that is that somebody has to have the obligation and somebody or an organisation has to be accountable in supporting those rights. Does Melba have a view that it has obligations that it has to comply with by reference to the CRPD? 

MS DEAN: Absolutely. We would reference – we would use the disability – sorry, the Victorian Charter of Human Rights as our base, which is compatible. So as an organisation, it is unconditional that all that we do must comply with supporting people's – upholding and supporting people's human rights. 

MS EASTMAN: So the Victorian Charter only applies to Victorian agencies, for example, public authorities, and public authorities have to act in a way in making decisions or delivering services compatibly with the rights in the Victorian Charter. Is Melba a public authority? 

MS DEAN: No. But we made a very clear decision that that was absolutely part of our fabric as an organisation and it would be the only way that we would deliver supports and services. 

MS EASTMAN: All right. So just finishing up on this topic, Melba has the checklists, the human rights statement and the Melba values. Is producing those values and having a written policy a sort of critical piece of the human rights architecture, if I can use that – it's late in the day – within Melba? Do you need to have the written document? 

MS DEAN: The written document is only part of. It is a critical part of the architecture, but you have to be able to, from our perspective, measure practice. You have to actually be able to see it in play every day. I often – as you said, I have spoken about the individual that receives the services. So the focus has to be on how those services are received and how we actually provide that support. So we have a raft of other mechanisms to ensure that that occurs and, as we mentioned previously, the human rights committee. We also have a group called Arrow and, in fact, they made a submission very early on. 

MS EASTMAN: I am going to jump in again. You are getting ahead of me because I am going to come to ARROW when I ask you some questions about how people with disability are involved in that. So can I ask you just to hold that thought for a moment. So I just want to come back to Ms MacRae. So you don't have a written policy on human rights, but the statement that you provided to the Royal Commission would demonstrate that there's a commitment to taking a rights based approach and recognising those rights. Why don't you have a written policy? 

MS MACRAE: It's an interesting question. I was surprised, actually, to find out that we didn't. However, when I look at the chronology of this, the Constitution was changed in 2018 to state alignment with the UNCRPD. And then at the same time, the mission of Scope was changed, and the mission became to enable every person that we support to live as an empowered and equal citizen. So that was a very different shift in mission statement. And then that was translated into the Scope approach, which is see the person, do it together, do it right, do it better. And that operationalises the lens of human rights into the fabric of how we operate on a day to day basis. 

MS EASTMAN: But my question was really why not have a written policy. If the commitment is there, why not represent to the clients and to the broader community that you have a written statement committing to human rights? 

MS MACRAE: I think it's something that we need to consider. 

MS EASTMAN: One issue that often arises in human rights is where there might be a clash of rights. And reading the material you have all provided to the Royal Commission, you have referred to restrictive practices. And you referred, I think, to balancing rights. And so across the three responses is the sense that restrictive practices are going to be an interference or an impairment maybe of somebody's rights, a freedom of movement or a freedom to associate, or even in some cases depriving people of their liberty. That's a significant restriction on human rights. 

How does a human rights approach in each of your organisations address restrictive practices in a human rights way as opposed to the way that might be looked at regulatory or for permission to do something? And Ms MacRae was on the previous panel where we heard about applying to a guardianship tribunal to be able to administer restrictive practices. So, Ms Dean, can I ask you – I think it's page 6 of your reply where you've dealt with restrictive practices, human rights and balancing. What does that actually mean?

MS DEAN: Well, firstly, it's the belief that a restrictive practice should always be the option of the very last resort. So understanding what that restrictive practice is. And in order to even look to a restrictive practice, there has to be a raft of processes, actions that have taken place to ensure that it is the option of last resort. 

MS EASTMAN: When you say, "last resort", do you apply a proportionality model where you are trying to weigh up what might be competing rights and interests across to the organisation? 

MS DEAN: It's very much from an individual – absolutely from an individual's perspective. And it's actually around behaviour support and understanding whether that restrictive practice is the option of last resort. And we would see that only a behaviour – and we actually call them behaviours of protest as we see all behaviours as a form of communication. And it's a protest against their environment for whatever reason. Hence why we look at it as an option of last resort and what else could we do to ensure that we didn't have to have that restriction. We would go through a raft of assessments to ensure it is the option of last resort, and it would have to be through an approved behaviour support plan. 

Now, the approval for the behaviour support plan also has to go through certain rigorous processes, both internally through – we have what's called authorised program officers on a regional basis that will review those behaviour support plans to ensure that it is upholding only positive behaviour support, which is the only human rights approach to supporting people who would have what would commonly be called challenging behaviours. When we talk about that behaviour protest, it must be a behaviour that's causing either harm to themselves or others. It can't be a mischievous or an annoying behaviour. That's why we look at it as an option of last resort. 

It would then go through another process whereby it would be approved – it would have to be approved externally through the Victorian Office of Senior Practitioner. And we have had many examples whereby an individual has decided to utilise an external behaviour support practitioner and whereby we have reviewed that plan and our belief is that the restrictive practice is not the option of last resort, and we have actually refused to implement that behaviour support plan and work with them to look at it as how we can then look at particular strategies to reduce – 

MS EASTMAN: Does that mean when – if you look at that from a human rights perspective, essentially you are saying that there is a process which has to examine all elements before you get to last resort rather than say last resort but just jump to it for convenience? 

MS DEAN: Absolutely. And that's part of the positive behaviour support framework. And I think sometimes we often miss that there's a piece before that, and that's how we actually support people. And that's why we would utilise person centred active support, which is about supporting people in a way that is meaningful to that person and enabling that person to actually live the life of their choosing and participate in activities that they want to participate in. 

MS EASTMAN: Ms Cullen, your response – it's page 11, paragraph 34 – is in the context of safeguards in community living initiatives. You say: 

While safeguards are critical, they should be oriented towards an understanding of risk, which includes recognition of culture as a human right and not an optional extra. 

Is that a last resort type model or is it a way of understanding the person, maybe behaviours of concern, and to really think about the response from a rights based perspective? 

MS CULLEN: I think where the tension arises is that it's external systems that will label the people that we provide support to as having behaviour of concerns or, as you said, challenging behaviours. Because there's a misunderstanding of how behaviour is applied within our cultural context. So where we get asked, or told, more to the point, that a positive behaviour support plan or restrictive practices needs to be implemented for an Aboriginal and Torres Strait Islander person living with a disability, it's the external system. So it's an external support coordinator who doesn't know the person. And more often than not, it's the Public Guardian who makes that arrangement to get a positive behaviour support plan in. 

What we've certainly seen, and as our Elders have written in our submission, is that we can understand and determine what that behaviour is. Not once have we ever, ever stated that someone has a behaviour of concern or a challenging behaviour. We understand it within the context of who that mob is, where they are from and what that particular behaviour might mean. It's the external systems that forces our people to have restrictive practices applied, and that's where it becomes incredibly dangerous. Because we are taking away understanding the essence of culture and how it shows up in the way in which we behave. 

MS EASTMAN: May I ask you, Ms MacRae, Scope seems to have a different approach. So in the response, you refer to:

Induction training for service providing staff includes the NDS Human Rights and You e module... 

And you say this in the – I know somebody else has written this for you, but Scope says this:

...which discusses human rights in the contact...

And it might mean "context": 

...of the provision of care and explores how disability service workers must balance the rights of their customers with human rights. 

That idea of balancing the rights is a little different to an approach in maybe restricting – using restrictive practices or managing behaviour that's a last resort approach. Why do you take a balancing rights approach and how does that work in practice? 

MS MACRAE: I think looking at the e modules on human rights, they are part of the toolkit that our disability support workers are exposed to in the first seven days. So we have a seven day orientation regardless – 

MS EASTMAN: Sorry to jump in there. And I'm just conscious of the time. So it's not so much what the training is, it is what the balance being – that you approach rights as in the balancing exercise between customers. Doesn't that lend itself that the support worker might have to make a choice about whose rights are going to win the day or – 

MS MACRAE: That is what it infers. 

MS EASTMAN: It's not a last resort model, is it? 

MS MACRAE: But I do – I concur with Hayley in that positive behaviour support is absolutely the linchpin in terms of – I love the behaviours of protest. And so one of the things that I think – when you think of balancing – and I'm not sure of the context that this was written in. But if you have two or three people in a home who have positive behaviour support plans and there are – there may be elements of restrictive practice in those, that to me really speaks to the environment that is not positive, an environment that is really set up to fail. And there has been practice in the past of putting people together who were similar in presentation. 

So what we have seen is a great reduction in the amount of restrictive practices, because we have had restrictive practices in homes that might have been there for years and in fact – you know, doors locked, cupboards locked, things like that. And the person that it applied to may not even be in the house anymore. So I think from – I'm not sure about the balancing context there, but I think it absolutely is a measure of last resort. And again, as providers, we need to be challenging always who we are supporting people to live with and make sure that they are living with the people that enable them to be their best selves and not this mismatch that we currently have. 

MS EASTMAN: I want to turn very briefly to the topic of who within your organisations is responsible for ensuring that the human rights standards are met. As all of you are CEOs, it is right, isn't it, that you have ultimate responsibility in that organisation? 

MS MACRAE: Accountability too. 

MS EASTMAN: And you have all nodded, so I will take the nods as a yes for the transcript. Have each of you been required to do any very specific training in leadership and human rights accountability? 

MS CULLEN: Yes, I have recently done the human rights training for Queensland. 

MS EASTMAN: Ms Dean?

MS DEAN: I was actually part of the development of the NDS Zero Tolerance and Human Rights training modules and worked very closely with NDS approximately a decade ago, and it's actually been part of my career to work with organisations to implement human rights based practices. And it goes way back to the Disability Act in Victoria in 2006. So, in fact, I have probably been instrumental in training others in human rights leadership. 

MS EASTMAN: And Ms MacRae. 

MS MACRAE: I have not. 

MS EASTMAN: Do you all have, to use the management jargon, KPIs or any performance indicators that measure against human rights outcomes tracked over periods of time? 

MS CULLEN: Not only is that management speak, it's also a Western way of speaking. So if I think of Synapse and our First Nations KPIs – quotation marks – I'm responsible to my Elders. I'm responsible to the Elders in resident Synapse. I meet quite regularly with them, and we will talk about how do we make sure that all of them ones that get service off Synapse, that we uphold their rights. But we won't use the words "rights" as often as we hear in a non Western context. We will talk about how do you know – how can you show me in Synapse that they are making their decisions? How are they leading – you know, how are they doing self determination? So it's very much a narrative as to, you know, us being told and me providing accountability back to the Elders about what it is. 

MS EASTMAN: For the others, do you have to report to the board against some indicators that track progress on human rights? And to use the language I think one of the advocates used before, is outputs and outcomes. Do you have to look at both? 

MS DEAN: Yes, we do. I report to the board on a number of KPIs relating to human rights, in particular on Personal Outcome Measures, because we know that if people are achieving their outcomes, their human rights are being upheld. We also have a raft of governance structures throughout the organisation that has reporting mechanisms so we can actually track not just human rights outcome measures but also restrictive practices. 

MS EASTMAN: Ms MacRae. 

MS MACRAE: Similarly, we have from ground up to board reporting on broader outcome measures of incidents and complaints and investigations, et cetera. In terms of Personal Outcome Measures, part of the quality and safeguarding framework that we have put in place just in the last six months is looking at individual outcome measures. We use a MiSO tool, and we are looking at gathering sample sizes across all services and aggregating those up to the board. Do they explicitly state human rights? No. But I think there would be some correlation. 

MS EASTMAN: Given the size and the revenue of Scope and Melba, I will direct this question to you. Have your organisations had regard to the UN Business and Human Rights Guidelines as a framework for promoting, protecting and measuring human rights in your organisations? 

MS MACRAE: Not to my knowledge. 

MS DEAN: No, not to my knowledge. As I mentioned earlier, we use the Victorian Charter of Human Rights. And the Personal Outcome Measures is based on an American system, The Council of Quality and Leadership, and they actually gather worldwide data across the outcomes, and we actually utilise that to measure outcomes. 

MS EASTMAN: So those outcomes, I think, as we said earlier, very much focus on the beneficiary of the rights. I'm interested in understanding the processes that you use, and one measure from a due diligence type perspective is the approach of the Business and Human Rights Guidelines. But that is not something that's a – you have looked at in? Okay. Just with the time available, I want to move to the way in which people with disability who receive your services and work with your organisations, how they are involved in a human rights approach, either in the co design of policies or in evaluating the way in which human rights are measured. Are you accountable to them in the same way that you are accountable to the boards? I think, Ms Cullen, you are accountable to the Elders. So you have a lot of accountability. 

MS CULLEN: Yes. A lot. 

MS EASTMAN: But, again, in the management speak of the modern world and the notion of 360, is it – the accountability is not just to those in the boards, but they are also to the clients and the customers. What's your accountability to people with disability? 

MS DEAN: So we have – one of our subcommittees of our board is our Practice Quality and Safeguard Subcommittee, and we also have an advocacy group. In fact, there's a number of these advocacy groups called ARROW. 

MS EASTMAN: Sorry, I wanted to ask you about ARROW. 

MS DEAN: Yes. Now is the time?

MS EASTMAN: Now is the time. And ARROW stands for Advocacy, Rights, Representation, Outcomes and Worth. And the members of ARROW are all people who receive Melba supports. And they actually attend every Practice Quality and Safeguarding Committee meeting. In fact, now that we are out of COVID, those committee meetings will occur regionally in line with each of those ARROW meetings, and they present to that committee. They also present to the board and, as such, I will then be answerable in that context. 

MS EASTMAN: Ms MacRae? 

MS MACRAE: We have various mechanisms within the three entities. So we have Customer Voice. We have a client experience framework that is in draft at the moment that will be in – I think in the next month or so will be finalised. And I think – and we also have customer reference groups that meet across different sections of the organisation. 

MS EASTMAN: Jumping in there, are you accountable to those who receive services? I'm using the 360 type management. Your accountability, not just to the board but to the customers? 

MS MACRAE: In terms of my presence on those, and my availability, I am – I am there to take questions and to take answers. I have never looked at it, interestingly, from an accountability perspective, and that's probably something that we should be considering. 

MS EASTMAN: Ms Cullen, First Nations has – I mean, I know accountability is a very Western word. But coming back to those sort of core concepts in terms of culture, community and community run organisations in First Nations communities, it's a different form of accountability. 

MS CULLEN: Different form of accountability. But we also have an external Aboriginal man who has a disability who is not employed by Synapse, and he acts as what we would frame – a Western way – as a mentor to the tenants. So if the tenants are feeling a bit wobbly and – or not feeling wobbly, the mentors often use to relay information to myself as a CEO or anyone else in the management or also to our board. So our board have been on site to hear from our tenants about what's good here, what works for you, what keeps you safe, your spirit strong. So there is an external person who can, you know, adjudicate if there is any issues between Synapse as an organisation or between the tenants. So that's available constantly. And that person is basically on – you know, hanging around, so to speak, as often as possible. And there's a direct contact through to our mentor where you don't need to go through a Synapse door as well. But even – as I said, not only me, our board has been at community living and the tenants then provide their words of accountability back to our board members as well. 

MS EASTMAN: Assuming all goes well with human rights then, if they are on paper, that's good. But as soon as they remain on paper and they fail in practice, then how effective are these rights in the absence of any particular remedy to enforce those rights, either at an organisational level or through other channels, for example, legal channels? How do your organisations build in that accountability if something goes wrong, and a person's rights have not been protected or respected?

MS DEAN: I would look to our zero tolerance approach to any breach of human rights. So we have a very – we do have a zero tolerance approach to any breach of human rights. And the way that would look practically is if there is a breach and it's committed by a support worker, for example, there would be immediate action, and that would be a stand down and would probably result in termination. 

MS EASTMAN: So that's for the support worker. What about institutional responsibility? It's the institution, for you as the CEOs, who have that accountability. If someone's rights have been breached or there's been neglect in the enjoyment and protection of their rights, what is your accountability when it goes wrong? 

MS MACRAE: I think our accountability there is to ensure that we have really robust systems that capture meaningful measurement and that we have analysis of any trending and analysis of that and triangulation of the data that we collect in the hope that we can get to predictive analytics, that we can see hotspots, we can know where things are not going well. That isn't the same – that's the balance of trying to ensure that things do go well. You need to be really internally vigilant around this. This is a huge responsibility and accountability that we hold. 

MS EASTMAN: Is there any redress or remedy for the person whose rights have been impaired? 

MS DEAN: Yes. And I guess – well, I am saying automatically yes. And I would like to add that that is also part of when I talked about our governance frameworks, is being able to measure and look at restrictive – rights being restricted and what we then do to be able to uphold people's rights. In terms of the accountability – sorry, I actually missed the first part of what you just asked. 

MS EASTMAN: So I have been asking what – so we started with where the institutional accountability is. So you said if a support worker breaches the rights, they would be stood down. So I said, where is the institutional accountability? So we have done that. The next topic – I know it was late in the day – is whether a person whose rights have been breached has access to remediation, be it be any type of remedy or redress? 

MS DEAN: Absolutely. So we have a whole process that we go through if somebody's rights have been restricted, and that would occur on the ground pretty much immediately. So our first – our first point is, is this person safe? Are they well? Are they okay? That's always our primary concern. We then would look at what has happened immediately and whether we can remedy that immediately, and that would always come with a full unreserved apology. 

MS EASTMAN: Anything else other than an apology? 

MS DEAN: It would then also look at the situation and whether we need to change the way we are delivering supports to that individual, whether that individual is living in an environment that actually is supporting the breach of their rights and so therefore they may want to move or live somewhere else. They may want to just move rooms. They may want to change something within their environment. And we would meet with that person to determine, as best as we can, what they would want as part of our unreserved apology. It can't just be words. It then has to come with actions and with what then works for that person, and that could be a raft of activities. 

MS EASTMAN: Well, when you say an unresolved apology, at whose initiation? 

MS DEAN: That would be at my initiation, or it would be at our COO or it would be our general manager. There are many occasions where I actually provide the apology face to face. 

MS EASTMAN: And what about compensation? Do you have a policy that guarantees that people can seek compensation if their rights have been breached? 

MS DEAN: We actually don't, and that's something that we should consider. 

MS EASTMAN: Ms Cullen, today is a very important day for First Nations people with the 15th anniversary of an Australian apology. So from a First Nations perspective, as a community, as a whole, having suffered intergenerational trauma, recognition of breaches of rights over a long period of time and the importance of apologies being led by First Nations people and reflected in how governments respond has been very much part of how First Nations people have approached issues around redress and remediation. For First Nations people with disability whose human rights have been breached, what is the approach that a First Nations guided rights based approach would take? 

MS CULLEN: I would be called to account. The most senior person would be called to account to explain how, why and then to listen to the impact. And I think that's one of the most important things, is this one about issuing an apology, but certainly from a First Nations, and I think for any Australian living with disability, is to hear the impact of what that breach has actually meant for that person. And that goes also to the heart of, you know, today's anniversary. And then, you know, we will sit in a yarning circle until such time as it's been dealt with. 

So, yes, I will, you know, have the responses and the punishment, so to speak, for my board of directors, but I will also follow the punishment that is handed out to me by that person who will contribute to the decision making about how I allowed our organisation to get to such a point that allowed – and then I would be required to follow how they determined what redress would mean to them and the level of complicity that I might have had in allowing such thing to happen. 

MS EASTMAN: One experience that may arise for people whose rights have been breached is ongoing trauma throughout a life. We know this for women with disability who have been the victims of sexual violence, is that the immediate response, which is an immediate apology, perhaps changing location and addressing it in a very quick and short term way, does very little to provide genuine redress to the person who is a victim of violence and abuse. To what extent do your policies recognise the ongoing nature of trauma over a person's life and, if there are a series of ongoing traumas, the cumulative effect of that? What, if any, are your policies to address those types of rights breaches and the remedies or remediation or redress for that type of neglect?

MS MACRAE: From our perspective at Scope, I don't believe we have a policy, but we certainly have a practice. So, unfortunately, I think we have to take the stance that all of our clients will have been exposed to trauma at some point in their life. So it is not the exception. It is actually – the way that we should be supporting people is in a trauma informed approach. And that is in a person centred active support, but there are other nuances there to that we can – are gradations beyond that. So we are currently trialling an approach called CALM, C A L M, that's come out of the UK, and we are looking at it for some of our clients who have very high needs. And it is a trauma informed practice, and we are hopeful that the initial results look really positive and the clients are really enjoying the experience of this. 

So I think it's about weaving trauma informed practice into your model of support and defining what your model of support looks like, and then ensuring that you have a consistent and elevated approach to that model of support. And trauma informed practice has to be the backbone of it in disability services. It can't be an add on or something special, it actually is – it's the backbone. It's the spine. 

MS EASTMAN: Does a trauma informed approach also incorporate culturally sensitive and culturally responsive approaches? 

MS MACRAE: It has to. It has to, because a person in their entirety is much more than a person with disability. That is one aspect of their life. Yes.

MS EASTMAN: And do you have stand alone written policies explaining what a trauma informed approach and a culturally responsive approach is?

MS MACRAE: We have practice guidelines. 

MS EASTMAN: But not a policy. 

MS MACRAE: Not a policy, not at this stage. 

MS EASTMAN: Ms Dean?

MS DEAN: We would be in a similar situation in that we have a practice approach where it – trauma informed practice, together with positive behaviour support. And we do have competency based training that we then support our support workers. We don't actually have it written as a policy, but certainly as a procedure, as guidelines and as a competency based training. 

MS EASTMAN: Ms Cullen, accepting that policy is a fairly Western approach to documenting what you say you are going to do, from a First Nations perspective, how do you weave in trauma informed and culturally responsive practices for people experiencing both intergenerational trauma and life long trauma as people with disability who have been subject to violence and abuse? 

MS CULLEN: Through the wisdom of our Elders and the wisdom of our people with disabilities over the last three years, we have developed what's called The Synapse Way. And we believe if we get it right for Aboriginal and Torres Strait Islander people, then we can certainly contribute to how we care for all people living with a disability. And as you said, you know, trauma informed is not an optional extra. It is part of it. So that is a set of guiding behaviours on how we will actually treat each other according to the United Nations Declaration on the Rights of Indigenous people. So it shows up in our behaviour. 

MS EASTMAN: I just want to put this as a final proposition, and the Commissioners may have some time – some questions to ask you in the time available. We asked you as one of the topics we might discuss is what would assist service providers to better understand and practice human rights. But can I shortcut this and put a proposition that these three elements would make a difference. First of all, that the human rights that you have all referred to have some legal force, that those rights are translated from that international setting into something concrete in an Australian legal setting, whether it's like the Victorian Charter or the other charters of rights. But there needs to be a legally enforceable right. That's part 1. 

Part 2 is it needs to be resources to build awareness and to build capacity in all parts of the sector, not just with frontline support workers, but people with disability need to know that their rights are part of almost the contractual obligations that exist between the service provider and themselves. And the third element is capability, and capability is not just the lone support worker doing their shift on a Saturday morning, but it's building institutional capability which can be measured, which can be transparent and accountable. 

So if I wrap those three elements, I will be interested in whether you agree that these are the elements to better assist service providers, understand and practice human rights, or whether I have missed anything in relation to those propositions. So I will say them again: enforceability through legal protection; resources to build awareness across the whole of the sector; and capability at an institutional level. I would welcome any comments or responses. 

MS MACRAE: I would agree that – clearly you are getting nods from three people. I think perhaps my only comment on it would be that that is going to take time, and I think there is a point in time now with all of the – that we have learnt through the DRC that perhaps we could consider a central repository of policy and contemporary practice. We spend, in the disability sector, an enormous amount of time and resources looking at evidence based practice, each organisation writing their policy. There's a lot of duplication of effort there. And there is some – there is some stunning innovation as well within disability, and I think it would be excellent to have that innovation curated and available for all so that it doesn't just exist in pockets and that we can all learn from each other in a collaborative way. 

MS EASTMAN: Thank you, Ms MacRae. Ms Dean? 

MS DEAN: I would absolutely agree with what you said and also what you say, Kate. And also the recognition of the cost ongoing within the funding frameworks to be able to provide supports in this manner. 

MS EASTMAN: Thank you. Ms Cullen?

MS CULLEN: And I would absolutely agree. But I would just emphasise, as we did in our submission, that the overlay of that is the culture – is the human right. That must be understood when you are implementing anything. And while we have spoken about it from a service provider's point of view, it is external institutions that impact on our capacity as a provider to elevate Aboriginal and Torres Strait Islander human rights. 

MS EASTMAN: Thank you. I know it's been, Ms MacRae, for you a long afternoon and for those following the Royal Commission proceedings today. But thank you. It's an important topic, and I'm grateful for all the extent to which you have answered the questions and provide your responses so generously. Thank you. Thank you, Chair. 

CHAIR: Thank you, Ms Eastman. I will just inquire of my colleagues whether they have any questions. Commissioner Bennett? 

COMMISSIONER BENNETT: No, but I would like to thank you for your evidence you provided today. 

COMMISSIONER McEWIN: Thank you, Chair. Ms Eastman's last question to you included building or having capability at an institutional level. And we have heard in this Royal Commission very few people or very few disabled people at senior management levels in organisations that provide services to disabled people. Could you tell me, each of you, of your direct supports to you, how many have a disability? 

MS MACRAE: No direct report has a disability. Two direct reports support a person with disability in their family. 

MS DEAN: Currently – 

COMMISSIONER McEWIN: Can I just clarify, though. In your direct reports, none? 

MS MACRAE: None.

COMMISSIONER McEWIN: Is that what you are saying? Thank you. That's my question. 

MS DEAN: Currently none. We have one vacancy where we are actually avidly looking for a person with a disability. 

MS CULLEN: And my answer is none. 

COMMISSIONER McEWIN: Thank you. And thank you again for your evidence. 

CHAIR: Yes. Thank you very much indeed. It's been quite a long session. So thank you for contributing over a significant period of time and in such an interesting fashion. Thank you very much. 

MS DEAN: Thank you.

<THE WITNESSES WITHDREW

MS EASTMAN: Thank you, Chair. That concludes the proceeding today, and we will resume at 10 am Brisbane time tomorrow. 

CHAIR: Yes. Thank you very much. We will adjourn until 10 am Brisbane time. Thank you. 

<ADJOURNED 4:54 pm UNTIL TUESDAY, 14 FEBRUARY 2023 AT 10 AM