Public hearing 30 - Guardianship, substituted and supported decision-making - Day 5
CHAIR: Good morning to all those who are in the hearing room at Homebush and to those who may be following this hearing on the live stream. This is the fifth and final day of Public hearing 30 of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. The subject matter of this hearing is guardianship and substituted and supported decision making. We commence with the Acknowledgment of Country. We acknowledge the traditional custodians of the land on which the hearing is taking place in Homebush, the Wangal people. We pay our respects to their elders past, present and emerging.
I'm joining the hearing from the Sydney hearing room on the lands of the Gadigal people of the Eora Nation, and we acknowledge and pay our respects to their elders past, present and emerging. We also acknowledge all First Nations people who have given or may give evidence at this hearing, as well as those First Nations people who are following the hearing, either in the hearing room or via the webcast. Yes, Ms Eastman.
MS EASTMAN: Good morning, Commissioners, and good morning to everybody in the room and also following the webcast today. So, we have three witnesses today. Our first witness is Mr Craig Gear, and then when he has finished his evidence, we will have a morning tea break, and then we will have our two witnesses from the NDIA. So, Mr Gear is with us here in the hearing room, and are you taking an affirmation or an oath? Affirmation.
CHAIR: Yes. Thank you. Mr Gear, thank you very much for your statement which we have and which we have read in advance of your appearance today. We are grateful for your willingness to give evidence to the Royal Commission. If you will be good enough to follow the instructions of the Associate who is to your right, she will administer the affirmation to you. Thank you.
ASSOCIATE: I will read you the affirmation. At the end please, say yes or I do. Do you solemnly and sincerely declare and affirm that the evidence which you shall give will be the truth, the whole truth and nothing but the truth?
MR GEAR: I do.
<CRAIG GEAR, AFFIRMED
CHAIR: Mr Gear, just to ensure you know where everybody is I'm sure you do, but just in case in the hearing room with you, Commissioner McEwin and Commissioner Ryan. I am participating in the hearing from the Sydney hearing room and presumably appear on the screen. I shall now ask Ms Eastman to ask you some questions.
<EXAMINATION BY MS EASTMAN SC
MS EASTMAN: Thank you. Mr Gear, can I confirm you are Craig Gear?
MR GEAR: Correct.
MS EASTMAN: You are the Chief Executive Officer of the Older Persons Advocacy Network.
MR GEAR: I am.
MS EASTMAN: Are you comfortable to me referring it to as OPAN from here on in?
MR GEAR: Yes.
MS EASTMAN: It's a role that you have held since 22 August 2018. Is that right?
MR GEAR: Correct. We formed in 2017.
MS EASTMAN: You have prepared a statement for the Royal Commission dated 16 November this year, and you have got a copy with you?
MR GEAR: I do.
MS EASTMAN: Are there any changes or amendments to the statement?
MR GEAR: No.
MS EASTMAN: And its contents are correct?
MR GEAR: Correct, yes.
MS EASTMAN: You have also provided to the Royal Commission a number of annexures with various documents, and you've got a copy of them with you here today.
MR GEAR: I do have a copy, yes.
MS EASTMAN: And the Commissioners have a copy for in the Hearing Bundle. You have set out your CV and your professional background, and I won't take you through that in detail, but you come from a great deal of experience in the health sector. Is that right?
MR GEAR: That's correct. My background is as a registered nurse, and I have also worked in health policy and consultancy.
MS EASTMAN: And so you've taken up the role as the CEO of OPAN. And I thought I might ask you about your responsibilities at OPAN. You have set this out in the statement, but are we right in understanding your responsibilities are the operation and management of the National Secretariat?
MR GEAR: That's correct. We are an organisation of nine members who deliver the direct services to older people. As the Secretariat, we manage the contract for the Commonwealth Government to deliver the National Aged Care Advocacy Program.
MS EASTMAN: And you also have responsibility for representing OPAN in the aged care sector?
MR GEAR: Correct, and contributing to systemic advocacy.
MS EASTMAN: And you also have responsibilities in terms of the overall implementation of OPAN's policies and practices and the management and monitoring of the service contracts?
MR GEAR: That's correct.
MS EASTMAN: So, I want to ask you now about OPAN. It formed in March 2017, and it is a national network comprised of nine state and territory organisations which have delivered advocacy, information and education services to older people across Australia for 30 years. So, pausing there, the history of OPAN is one that is a more recent history. You've come together in 2017. Why was it necessary to bring together the state and territory located advocacy services as to one national framework? Can you tell us why that came about?
MR GEAR: We met together in 2014 and realised we were all aligned in our approaches to delivering human rights for older people. A number of our organisations deliver the National Disability Advocacy Program as well, and so also deliver supports at the individual information and education level. Because of that alignment, we wanted to consider national consistency but also contribute our data to the system, to be able to highlight issues that we were seeing on the ground in dealing with those day-to-day interactions with our advocates, to be able to inform reform and change the system as we see it needed to happen.
MS EASTMAN: And when we are talking about the older people for whom the advocacy network supports are provided, what sort of cohort or age group are we talking about?
MR GEAR: We support people over the age of 65 and people who are 50 and over from First Nations backgrounds who are receiving or eligible for aged care services funded by the Commonwealth Government.
MS EASTMAN: Now, one of the tasks that you undertake on, I think is it right, an annual basis is to prepare something called a Presenting Issues Report. Is that right?
MR GEAR: That's correct. Each quarter our member organisations across the country provide a report on the emerging issues that they see from the day to day interactions with older people and feed those up to us at the Secretariat, and we perform a qualitative or thematic analysis of those key themes to be able to report to that, which we are now reporting publicly each year.
MS EASTMAN: When you say you are hearing from older people, what's the process by which information is collected from older people that then contributes to the work that you do in identifying the issues and then the publication of the Presenting Issues Report?
MR GEAR: So, the model of advocacy that we practice is client directed. So, older people or their families will come to us looking for supports from our free, confidential and independent services. The interaction that that advocate then will have with the person gets documented in our data systems, as well as case notes. And so what we are seeing from around 27,000 occasions of support of delivery information and individual ongoing advocacy work is a range of issues around challenges with communication in the aged care system, the quality of services provided, but also the rights of older people being upheld or being breached on a daily basis.
MS EASTMAN: So, you have provided to the Royal Commission a copy of the Report Number 2 for January to June 2022. And, Commissioners, you will find this behind tab 16. And this is in part of the tender bundle, Part B, I think. So, the Commissioners have got that. And, Mr Gear, you have got a copy of that?
MR GEAR: I do.
MS EASTMAN: Then if I can ask you to turn to page 4, which is your message from the CEO.
MR GEAR: Yes, I have that.
MS EASTMAN: So, in your message, which is sort of the cover all and overall summary of the report, five key themes emerge as the top presenting issues raised with advocates in the nine state and territory organisations. One of those issues, if you turn to the top of the third column and the first dot point, says this:
"Of significant concern..."
I will check the Commissioners are following me?
CHAIR: No, it's just I've discovered that every second page is missing in my copies, but carry on.
MS EASTMAN: I will read this, then, Chair, so you are aware of this. So, the dot point on the top of that page says in the column:
"Of significant concern in reporting period are the number of troubling incidents of the inappropriate use of guardianship and attorney power within aged care. Sometimes it's families, sometimes it's the provider and sometimes it's a failure of the guardianship system. Older people's human rights are being impacted, and we need to collectively do better in aged care, in the legal sector and in the community. We cannot accept when these important protective tools lead to the human rights of older people being breached.”
That does that encapsulate this issue coming through. So, you know this hearing is looking at the issues of guardianship, substitute decision making and supported decision making. And they are themes that I want to explore with you. But before we get into some of the detail of that, can you tell the Commissioners how the point that I've just read out there emerged as one of these key themes through the consultation with older people?
MR GEAR: So, there are a number of occasions then on page 48 of that report that highlight some details of individual experiences of the system at those different levels, which I had highlighted in my summary there. We find that there is a challenge in the current system where people are given the privilege of having put in a position of an enduring guardian or enduring power of attorney, depending on which state and territory that's defined under.
MS EASTMAN: May I pause there, because that's one topic we haven't spoken a lot about, what a power of attorney means or enduring power of attorney. We had one witness earlier this week who talked about giving her older sister an enduring power of attorney. Do you want to tell us what that means?
MR GEAR: Sure. So, these are meant to be protective instruments to ensure that when an older person or a person with a disability gets to the point of not being able to communicate or make a decision for themselves, either change in function or change in ability to communicate or change in cognition, that they have identified what their wishes and preferences are and that they are able to then have someone in place of them at that time on specific decisions to be able to act on their behalf. What they are meant to do is protect people to actually say to them there is someone who will work not necessarily in my best interests, but will understand who I am as a person and will make sure that they stand up for me and act on my behalf if I'm not able to do that.
MS EASTMAN: So, anybody can really do a power of attorney.
MR GEAR: Correct. I have a power of attorney. I have an enduring guardian as well.
MS EASTMAN: So, you'd use the power of attorney for something as simple as saying, "I'm going to be overseas for six months. I need somebody to be able to communicate with the Services Australia to renew licences or do those things.” An enduring power of attorney is a little bit different, isn't it, because you can think in advance what you want but you are not under a disability at the time that you are making the power of attorney. So, it's a bit different to guardianship where you've lost your capacity to make decisions. Is that right?
MR GEAR: That's correct. And the challenge, I think, is that we see that people think that that means that person now makes all my decisions for me. They are very specific. They might be about financial decisions once I've lost those capacities to make those decisions for myself, or it might be a particular decision around where I will live if I'm not able to make that decision myself, or about medical interventions that I might want to take. And the important thing is that you have actually taken the time to actually instruct that person who's taking on that extremely privileged position about what you want in the future.
MS EASTMAN: So, your power of attorney under an enduring power of attorney should be somebody who knows that you've made this power of attorney, knows what the limitations may be in the power of attorney in terms of what decisions they may want you to do, but they do so based on you in advance saying, "This is my preferences in terms of where I want to live, for example, or how I want to live.” But it might also cover any sort of issues that somebody thinks might be really important in their life.
MR GEAR: That's right. It's allowing that person to know you as a person so that you can continue on, and your human rights can be upheld if it gets to a point where you might be not be able to make the decision. One of the things we will talk about is the that those have very limited boundaries for those types of decisions that should be made and other decisions in your life still stand, and you still have the right to make those decisions.
MS EASTMAN: Alright. So, that's a little bit of a walk out on those concepts, so thanks for explaining them. So, as you've put in the report and you have referred to page 48, and that refers to the misuse of enduring powers of attorney. So, come back to the question I asked you originally: Why did this become a key issue in the themes you have identified in your report?
MR GEAR: We are seeing issues where someone who has been appointed a guardian under the Public Trustee or the Public Advocate where that person may not have actually even met the person or interviewed them, particularly issues where someone comes from a culturally diverse background or does not have English as their first language. We had cases where decisions were made for a person to be going to residential aged care against their preference.
MS EASTMAN: Would this be even when they had a power of attorney or enduring power of attorney in place?
MR GEAR: Correct, or when there is a family dispute and then that's taken it to an order by the state to actually have that person under the Public Guardian. That person had a temporary delirium and then when they came out of that did not want to live in that residential aged care facility. But the Public Guardian had not met with that person to actually establish their understanding of what that person wanted, what their preference was. In the end we worked with that person, they returned home to live with one of their daughters, and it was a great result.
We also have issues where people do not understand their roles and responsibilities as an enduring power of attorney or enduring guardian, and we've had situations where then people have taken money away from that person or made decisions about medical interventions that are not in line with the wishes and preferences of that person. I suppose I would talk about it like we have given people the keys to the car, we are allowing them to drive, but we haven't given them a licence. We haven't actually trained them. We would not expect someone to get in the car without going through some training program about what the road rules are. And so some of the chaos we are seeing in the system is because we have not trained people in what this privileged position and the limitations and responsibilities they have under these positions.
MS EASTMAN: This links to the services and the work that you do. In that scenario that you just gave of a person who experienced some episodic impairment of perhaps their decision making and you describe the delirium then on recovery said, "This is not where I want to live". How would that person make their way to OPAN?
MR GEAR: In that case, it was actually the aged care provider who rang us and said, "We think this person needs some independent advocacy and some support so that their wishes and preferences and their rights can be upheld.” We then went and got an interpreter. One of our independent aged care advocates met with the person. We did have resistance about whether we had the right to actually speak to that person. That person was absolutely able to articulate their views and their preferences. We then had to work with the Public Guardian to have that person's rights respected and their decisions on accommodation. We then had to make had to actually facilitate an independent medical assessment to demonstrate that this person had the ability to make their own decisions.
MS EASTMAN: So, did that mean sort of challenging the Tribunal appointed guardian's decision making?
MR GEAR: Correct. And this is a long, complex and involved process. It takes a long time. It's costly, and often the independent advocate is not listened to in that process. And we do need to see changes in the system to allow the people to have the absolute right to have independent advocacy support or independent third party to support them to express their wishes and preferences in the system.
MS EASTMAN: And did that involve having to assist the person who was subject to the guardianship orders to seek a review or to make application to revoke the Public Guardian's order the order that the Public Guardian be
MR GEAR: Correct, and then to facilitate the independent medical assessment, to then take that through the Administrative Tribunal and have their the guardianship order revoked and have an alternate guardian appointed.
MS EASTMAN: Right. And so one of the services that OPAN provides is to assist older people to take those steps and to understand what needs to occur to be able to reverse orders that might have been made about them. Is that right?
MR GEAR: Some of our three of our organisations are also community legal centres, and so under that function, they provide that support. We will provide information around the steps that someone might need to do, but under the National Aged Care Advocacy Program it is about information provision, rather than that representative model. So, there is pockets where we can do that, but we need much more resourcing to be able to do that, and I suppose some the legal capacity within that as well.
MS EASTMAN: So, you have talked on a few occasions now about rights and people's rights. So, you have provided to the Royal Commission something called the Charter Aged Care Rights, and the Commissioners can find a copy of this behind tab 18 in the bundle. And this Charter of Aged Care Rights appears to be the product of the Australian Government's Department of Health. And the Department of and the Aged Care Quality and Safety Commission. Is that right?
MR GEAR: That's right. And this was developed, I believe, back in 2018/2019, and it was contained as part of the quality-of-care principles that are linked to the Aged Care Act. It was developed in consultation with older people and with consumer organisations such as ourselves. It's 14 statements that are about the expectations an older person can have.
MS EASTMAN: Just pause there. So, 14 statements appear on the second page of the document. Is that right?
MR GEAR: That's correct.
MS EASTMAN: Okay. Yes, go ahead.
MR GEAR: They are statements, I suppose, that really act as a sword and a shield for older people of what they can expect from how they want to be treated and should be treated by every aged care worker and every aged care provider in the system.
MS EASTMAN: So, the Charter of Rights here is really looking at the quality of the way in which a person is treated. Is that right?
MR GEAR: That's correct. They link to the Aged Care Quality Standards, but they are, I suppose, individual statements. One of the strongest ones that people talk to me about is their right to their independence and their right to be part of the decisions that affect their lives.
MS EASTMAN: And is it your view that the 14 principles set out in the Charter reflect a human rights approach to the rights of older people?
MR GEAR: This is at the essence linked to and I suppose reflects a number of the rights that are reflected in the UN Convention of the Rights of Persons with Disability but other international conventions as well. And I can talk to you about some of the challenges of enforcing those rights.
MS EASTMAN: Now, there's no convention on the rights of older people at present. You are aware of that?
MR GEAR: I am aware of that and that is something we are championing that we would like to see. That would be
MS EASTMAN: Is it right to say there's a lot of advocacy both at what I might say the domestic level and international level that this is a real gap in international human rights protections, that while someone might say, "Well, older people are protected by all human rights”, but I think it's been identified, is that right, that there is a gap in relation to identifying rights that may be specific to the interests and the protection of people who are older?
MR GEAR: Yes. And not all older people have a disability, and there are also rights to citizenship the rights to autonomy that are not covered under these conventions, and the issue of ageism is not dealt with under any international convention and needs to be.
MS EASTMAN: So, put aside the fact that I think there is some work being done to advocate for the development of a new convention. The approach your organisation takes to rights is to work with the Charter of Rights that's there but also draws on the broader concepts of human rights that we find in our international conventions and in our domestic legal system. Is that right?
MR GEAR: That's right. So, a practical approach would be that we inform older people about they have these rights. Their rights are not checked at the door when they enter aged care. That they can use this as a tool for discussion with their aged care provider, and we will often use that as a tool as well. One of the challenges with this Charter of Aged Care Rights is the level of enforceability and the pathway to recourse or restorative justice that doesn't exist at the moment. We are hoping that that will be dealt with if the new Aged Care Act.
MS EASTMAN: You look at this Charter and say, this looks good, it sets out the principles. But if these rights can't be enforced and there's no mechanism for making sure that the people with the duties in relation to the rights accord with these duties, then this could just have a slight aspirational flavour about it. Is that right?
MR GEAR: That is correct and when I have discussions with aged care workers and providers, they say it's nice to have, but it's just a piece of paper. And older people's criticism of it as well is sometimes it's just a piece of paper and it's not enforceable. We need enforceable mechanisms and recourse if rights are breached, if these 14 rights or other ones that might be contained in a new Act.
MS EASTMAN: And when you are talking about a new Act, are you talking about having these rights off the piece of paper but into legislation? So, you want legislated rights?
MR GEAR: Absolutely. There needs to be legislated rights and there needs to be consequences and compensation if those rights are breached. Recommendation 1 and 2 of the Royal Commission into Aged Care Quality and Safety put that front and centre. There is a reason why they are the first recommendations, because we want to change the aged care system to focus on the rights of older people and their human rights. That will be the paradigm shift which shifts how we respect and provide dignity to older people.
MS EASTMAN: So, just in a hypothetical and best-case scenario world, what would that look like in legislation in terms of the way rights might be described, the way rights could be enforced and who would have responsibility for enforcing the rights? And you have talked about compensation or some type of remedies. On those three areas, have you given some thought as to what this might look like in legislation? And I assume you are looking at Commonwealth legislation.
MR GEAR: Correct, Commonwealth legislation, and you say best case scenario. The best-case scenario would be all these rights are upheld and no one needs to actually bring forward a case for people to be heard that the right has been breached. But we know in reality that there will be breaches, and older people are telling us that what they want to have is a forum where they can bring their concerns of a breach of a right forward, that it is a accessible system, that it is low cost and that they will be heard, and then commitments will be made to do better.
And so that may be some form of conciliation. It may be some form of Tribunal. And it will be a staged process so that they still have options and legislative and legal options if they don't feel that the provider has taken the action that they have committed to. And so, in the future, that may need to sit with the Aged Care Quality and Safety Commission. It may sit independent of that. But we see that there needs to be accessible systems for older people to have their rights heard, respected, and then commitments and actions.
So, it might be enforceable undertakings. It may be an apology. It may be a change in policy, as we see in things like the human Queensland Human Rights Commission and some of the frameworks they have put in place for mediation and conciliation. We want to be able to maintain the relationship between the provider, the workers. We want to protect the workers' rights as well, but we want older people's rights to be the ultimate thing that is upheld here.
MS EASTMAN: One aspect of protecting people's rights is to move from a protectionist model around decision making, and OPAN has got a very strong view, have you not, about supported decision making. Is that right?
MR GEAR: We absolutely do. We think this is the framework that should be the mainstay of the system in all aspects, despite or even when there are substitute decision making parameters, orders or a Public Guardian in place. This is the framework that all older people and all people with a disability should be able to access.
MS EASTMAN: So, the Commissioners will find behind tab 23 in the bundle OPAN's supported decision making position statements. So, that's November this year. And the introduction and overview links OPAN's support for using the Convention on the Rights of Persons with Disabilities in relation to supported decision making, and you make reference specifically to Article 12 of the Convention, which the Commissioners have been talking about this week.
So, is it at this point that, as you said earlier, not all older people will be people who live with disability, but there may be some. But do we understand that in terms of looking at supported decision making for older people generally, either with or without a disability, that the approach taken in the CRPD provides a model of thinking of supported about how to work supported decision making generally?
MR GEAR: Yes, and I think even my own experience with supporting my father where he would defer to me to make decisions when we were interacting with medical staff. And it was important for me to say, "No, dad, you might have given me the power of attorney and enduring guardian, but you make these decisions. And everyday decisions, you are making those. This is not for me to make.” And so that person with full capacity is still able to make the decisions. What we are talking about here is, I suppose, a philosophy and practice that needs to be embedded, along with embedding human rights into aged care practice, that is the way we interact with older people in basic daily decisions, but also decisions around other aspects of their life.
MS EASTMAN: So, the approach is simple, isn't it, on one level, and it's simple in the sense that it starts with a presumed capacity. And so you assume that older people have capacity to make decisions and that older people enjoy legal capacity on an equal basis with other citizens. And that they have the right to make those decisions about the care and services that they receive, and they have the right to take risks. So, in that sense, those principles are fairly sort of clear and simple. It's a practical application of them that creates some difficulty in building the skills on both sides for the person supporting in decision making, but also for the person who is supported to know how that balance should be struck. Is that right?
MR GEAR: Probably in three aspects. It's the older person themselves, to give them so they know their rights are enshrined in this and their decision will be supported through supported decision making. For the family members, which is sometimes where we do find the dignity of risk is infringed, where people want to be protectionist or think this person is vulnerable and can't make decisions such as going to the shops and who they see and who they visit. And then, thirdly, it's the aged care workforce or the care economy workforce who actually need to be trained in this methodology so that they are always asking the older person, always understanding ahead of time what their wishes and preferences are and acting in line with those wishes and preferences.
MS EASTMAN: Okay. Some of the barriers to this, which you have observed in the case work, is a common assumption held by people in the community that older people with disability don't have capacity, and this is particularly the case if a person is diagnosed with dementia, that that diagnosis may almost putting on the sort of every stereotype that we see in the media or that we think in the community attaches to dementia, that the diagnosis is the loss of capacity. That's an assumption that's built in, and that stereotype around what it means to live with dementia almost leads to the default position that a person is not capable of making decisions. Is that right?
MR GEAR: That's right. And with situations where we talk to people on our advisory group who are living with dementia, they talk about how there's times when they need support on those decisions, but it's not that that ability or right to make decisions should be taken away, and they are absolutely adamant that supported decision making is the model that they want now and also into the future if they get to a point where they aren't able to articulate some of those preferences as well.
MS EASTMAN: And do you see sometimes there's a bit of a sliding scale that what may start as support becomes more in the direction of substitute decision making as perhaps the family member or support workers sees this older person through this very infantilised lens? That they become very childlike and then the decisions and the treatment of an older person with dementia is like treating a small child. Do you sort of see that coming into the stereotype?
MR GEAR: Even to the point of, when I reflect on my own practices as a registered nurse, of instructing people of when they are going to have a meal, when they are going to have a shower and not respecting the right of that person and actually sitting with them and saying to them, "What would you like to do today? When would you like to have a shower today?” So, even in basic activities of daily living, we take away the right of that person to be in charge, which is a right that I would be no one would come and talk to me in that manner, but when someone has is living with dementia or is an older person, or a person with a disability, we take away that right to make those individual daily decisions.
MS EASTMAN: So, even the process of this is contributing to the diminishing capacity for making decisions, because you are not having any opportunity to make decisions even on simple choices as to what you might want to have for breakfast or at what time you want to have breakfast.
MR GEAR: Correct. And then taking away that right to self determination and the right to autonomy in your daily life.
MS EASTMAN: So, I wanted to ask you about some of the circumstances you've seen in the advocacy work about the impact of COVID, and you've dealt with this in the statement at paragraph 30. And COVID, in a sense, has provided this perhaps unique opportunity to really see supported decision making or substitute decision making in operation. And your network has identified this in terms of what has happened to older people in aged care during the pandemic. Do you want to speak to what you've seen in terms of some of the trends as a result of COVID and, in particular, the restrictions on people being able to visit aged care facilities?
MR GEAR: So, a number of us were involved with developing the industry code for visitation to residential aged care facilities. That was on in response to aged care providers who believed they were doing the right thing and protecting vulnerable older people, who were, yes, at greater risk of health impacts because of COVID 19. But the pendulum went too far, and we had situations where people were not allowed to see family members who were dying or were palliative.
We had aged care providers making decisions about who would be the allocated person to come and visit when another family member might have been closer or another friend, at the right and the direction of the older person who they wanted to see. We had situations where I take, for example, myself, who was able over a period of time to go out and have picnics in the park, yet my uncle who was in a residential aged care facility was told he was not allowed to walk out the door, and if they did, there would be consequences and put in isolation if he was to walk around the block.
So, older people were impacted in a much greater fashion. Their rights were impinged, and they weren't afforded the same rights and freedoms as other citizens in our society.
MS EASTMAN: During this time, did you see any examples of older people being able to advocate for themselves? Because I want to ask you about the work that you do on building the skills of self advocacy.
MR GEAR: That's right. So, when we gave people information, when we gave them the Industry Code for Visitation some older people said, "I want to exercise my right to not have visitors and to remain in the environment." Other people said, "I want to actually have a partner in care come in to be here to support me and have that one on one contact." So, the information provision and also then providing information to providers about the limitations also of public health orders.
We had situations where providers were saying, "We have a public health directive that we are not allowed to let anyone in" and we had to provide both the family, the older person themselves and the provider with clarity around what the extent of those orders were and that it was really about infection prevention control and public safety measures that would still allow essential visitors to come and in see that person at the direction of the older person and a person of their choice.
We also saw it around vaccination where decisions were being made for older people about whether they would or wouldn't have vaccinations, even when the older person was able to articulate their wishes and preferences. We also found when and then people were denied access to vaccinations because of a decision of a family member. We also had situations where the person themselves had a record of having vaccinations. So, while they may not have been able to verbalise their current preference, there was a record of what we term, I think, substituted judgment, was not being looked at to allow that person to who would have been able to articulate that in a different circumstances stance their preference to a vaccination.
MS EASTMAN: So, COVID has sort of given OPAN and other advocacy organisations the opportunity of saying, even in a crisis situation, there should be tools available for people to practise self advocacy. And OPAN's currently in the process of creating a self advocacy toolkit to help build the knowledge and capacity of people to advocate for themselves. Can you tell the Royal Commission about what has been involved in the preparation of this toolkit and how this is intended to work in practice in a day to day setting?
MR GEAR: I quote the amazing Gwenda Darling, who is one of our older people advisers from our reference group, who says knowledge is power. And so what this self advocacy toolkit, which we are launching on 29 November, is about is providing a place where people can come and explore that information for themselves. We can actually provide tips and tricks about how they can raise their concerns. But also they can engage independent third parties like our aged care advocates to support them to have their voice heard, and also to understand what their rights are, their rights to complain without reprisal, the rights to actually raise issues of concern, but how to do that in a way that gets the outcomes that they are looking for.
So, that planning for working with an aged care provider themselves, this would be the most wonderful best-case scenario that we did ourselves out of a job and that there was no longer a need for independent advocates, and this is one of our strategies to empower people to speak up for themselves to be able to have their rights upheld.
MS EASTMAN: To the extent that this has involved consultation with and development with older people, what perspectives have been brought to developing the self advocacy toolkit from an older person's perspective that perhaps was unexpected for you?
MR GEAR: Not unexpected, as is often articulated in the disability sector, is nothing about us without us. And so it was important for it to be framed in language that older people resonated with older people, but also articulated the right to raise their voice. Often some older people have told us they just don't want to make a fuss, and this is, I suppose, once people have the information for themselves, how they are able to do this for themselves and how they are able to articulate this back to family about what their wishes and preferences are rather than the assumptions of what families often think is what the older person wants.
MS EASTMAN: Okay. The next topic I want to turn to is the issue of planning for the future. And in the areas that we have been talking about for people with disability, we have heard, in terms of the statistics and the data, is that there are a lot of younger people under the age of 65 in fact, they are usually about two thirds of the cohort of people for whom a Public Trustee or a Public Guardian might be appointed. And we haven't heard a lot in that area about younger people living with disability being able to plan for the future. That a lot of the focus is on what the immediate needs might be, be it accommodation or provision of services.
We know a lot of people are also NDIS participants and so their participation in the NDIS is often at times fairly short term. It's the length of a plan. It's the particular services that are provided. Is there something that this Royal Commission can take from the work done by OPAN and older people in thinking about future planning? Is there something we can take from your experience in that forward planning or planning for the you future?
MR GEAR: So, I suppose in our supported decision making position statement, we have provided, really, a road map for reform for the whole system. We have also done some work around some practical tips and tools people can use. So, our supported decision making toolkit is something that is accessible to all people, developed by ADACAS, one of our our ACT member. And that can be utilised for people to document where they want decisions, and what their wishes and preferences are, and that can happen at any age and doesn't need someone to be old or to be with a disability. It's something we should all do.
The other item that often gets talked to me about is around what happens when someone isn't able to communicate their decision in the future. Consulting with Teresa Flavin, who is a member of our reference group and is someone living with dementia, she said to me, "What I want is an advanced social directive.”
MS EASTMAN: What does that mean?
MR GEAR: That is similar to an advanced care directive, which is often about the way I want to die, an advanced social directive is about how I want to live. And that can be how I want to live in my intimate relationships. It's about how I want to be treated, about how when I might have fluctuating capacity how someone will engage with me, provide me space to still make decisions. It is a filmed will, in that sense, and could be attached to someone's My Health Record or to their My Aged Care Record which gives instructions to anyone interacting with that person friends, family, care workers about how that person wants their interactions and care to be delivered and what works for them.
I think it is a really interesting tool that will allow anyone to have their rights upheld and their wishes and preferences articulated. It will be much more difficult when I can see Teresa there talking to me to make sure that I respect her wishes and preferences, whatever her level of communication is with me at that point in time.
MS EASTMAN: Have you seen that sort of used in practice anywhere yet?
MR GEAR: It's there is a tool that has been developed. I think it's I can take it on notice and send you the link to a system that's been developed around that. It's often being used around advanced care planning for someone who might have a life limiting illness, but the tool is absolutely available for anyone, whether that's someone with cognitive decline or any other challenge of ability to be able to articulate their wishes and preferences.
MS EASTMAN: Do you think that would be a tool that would be helpful for Public Guardians or Public Trustees to use? And we have heard some evidence this week that often there is no personal connection, but if there is personal connection, it might only be a visit once or twice a year, or often the communication is by telephone rather than in person. Do you think a tool like this, if there was a structure around that at the beginning of a relationship between a Trustee or Guardian and the person following the orders being made would be helpful?
MR GEAR: Absolutely. And Teresa said she would like to see it be made common practice, but also almost mandatory as someone was starting to engage with anywhere in the care economy and care community, whether that's aged care in their home or a residential care. Then attaching that to make it accessible, either with a QR code at the end of someone's bed, or attached to their record, or in their electronic record so that it gets triggered so that people have to look at that.
What we do need to make sure is that there is no coercion that happens in developing these. So, independent third party supports, whether that be an advocacy service to help support someone to put this together, that may be required as well to make sure that these are credible and is at the rights of the person themselves who is putting this together.
MS EASTMAN: Alright. I want to turn now to the suggestions for change that you've identified at paragraph 50 and following of the statement. And these are some suggestions to improve and support the rights of older persons with disability to be supported to make decisions. The first is that there is a need for adequately funded professional advocates as potential supporters in aged care decision making processes, and this should be something that the older person should be able to choose, to seek the support of an advocate. So, what would that look like in a practical way?
MR GEAR: So, there will be models of self advocacy that are supported, and we train people so that they are able to do this for themselves. We also then have people that can walk beside a person, be that a peer advocate who is trained and credentialed, or our paid advocacy services. Our Queensland member ADA worked with the University of Queensland and did a cost benefit analysis of that. There is also evidence in a statement about how this is a protective mechanism and prevents abuse.
So, adequately funded, accessible, but also all older people and people with a disability knowing that they have the right to an independent advocate support who will speak up for them, that will work at their direction, that is partisan, is on their side, so they are independent of the system of government and of the aged care provider, and of their family as well.
MS EASTMAN: The second is the development of co design national policy and legislative framework that includes provisions for effective guidelines and safeguards. You have identified four elements, one being the eight national supported decision making principles that you've identified from the work of this Royal Commission following some roundtables. Secondly, a focus on advanced directives on outlining the wills and preferences of individuals to assist in decision making.
The third, a requirement that, in rare cases, there are either substitute decision makers, but as understand, it is identifying a rare case and understanding that best interests still can be informed by will and preferences. And then the final is a requirement that the criteria used in assessments of decision making abilities might put in square brackets there, capacity must be continually revised and improved through explorations of how they are implemented in real life decisions.
MR GEAR: Yes, we need to see that the substitute decision making is a last resort, and it is not the default position as we are seeing at the moment, particularly when we are starting to see in aged care restrictive practice consents where people are being put to Tribunals so that the consent process can be undertaken with that. We should not be acting in the best interests of people. We need to be acting in line with their wishes and preferences and to be able to document and understand those from the person or from their history of that sort of substituted judgment to get an understanding of that.
MS EASTMAN: Third is improving access to existing supported decision making resources and further development of those resources through a co design process where possible. Do you want to speak to that anymore? I think we might have covered some of that.
MR GEAR: Yes, I think we have got the policy frameworks in place. We've done a lot of work to develop the tools. We now need to implement those tools and effectively legislate for them to be used, because there's no point those tools sitting on the shelf or no one knowing about them. We need to train people in those tools.
MS EASTMAN: The fourth is developing a national public awareness campaign to promote understanding of what supported decision making is and why it is relevant in preventing and/or minimising elder abuse and maximising the rights of older people with disability to make decisions and take risks. So, what would a national awareness campaign look like?
MR GEAR: Anyone that is taking on the role of Power of Attorney or also for the Public Trustees and Public Guardians, that they must go through training. They must understand their role. Back to the driver's licence analogy, we are not letting people on the road without going through training or getting a licence. We really need that same thing. And that would be part of the awareness campaign about the absolute privilege and responsibility is if you are someone who's appointed under these instruments and tools.
MS EASTMAN: Fifth is embed supported decision making predictions and practices in educational and training programs relating to those working with older people with disability who want or need support in their decisions.
MR GEAR: Yes, so it shouldn't be an either/or. Supported decision making must be the default and always remain, even when there is a substitute decision maker, but we need to train anyone that is interacting with an older person or a person with a disability about what this means. We also need to train them in human rights and how you deliver those human rights in practice.
MS EASTMAN: And that's the sixth one, is the introduction of compulsory training for all people providing aged care services, and you raise there a range of issues concerning ageism, unconscious bias, elder abuse, human rights, different communication abilities and the way in which people make decisions. And you've drawn the Royal Commission's attention to a number of recommendations from the Royal Commission into Aged Care Quality and Safety. Is that right?
MR GEAR: That's right. So, if we are putting human rights into the new Aged Care Act there needs to be a framework that actually embeds that in practice and it provide a level at a work level, but it also means that individual workers need to be trained in this and that needs to be mandatory training in base training but ongoing education as well.
MS EASTMAN: Alright. Mr Gear, we have covered a lot of territory today. Thank you very much for answering my questions. The Commissioners may have some questions for you.
MR GEAR: Thank you.
CHAIR: Yes, thank you Mr Gear. I will ask Commissioner McEwin if he has any questions to put to you.
COMMISSIONER McEWIN: Thank you, Chair. Thank you, Mr Gear, for your evidence. It's been very helpful. A couple of matters I would like to raise with you. The first one relates to paragraph 37 of your statement where you talk about the situation where there might be a somebody who has a Power of Attorney blocking the older person from getting access to an advocate and perhaps saying that they know what's in their best interests, etcetera. What are some of the effective ways to resolve of that tension and to ultimately exercise their human rights of the older person?
MR GEAR: We have had situations and we have had the power of attorney go to legal representation and have letters written to us to say that they that we are not to speak to the person. And that's when we know that there's a situation or a risk of abuse by the person appointed as power of attorney. We need to have in legislation that we have the right under law to speak to the individual and to educate them about their access to rights and the availability of independent third-party support through an advocate.
If that was done, we would then be able to work with a person to identify risks, educate them on their rights, and then if they said they didn't want advocacy, we would absolutely respect that, but we would actually be able to make sure that people have been informed of their rights and can exercise that and know of other options such as mediation to have some of the family relationship issues resolved that might be going on there. It needs to be a legislated right to aged care advocacy.
COMMISSIONER McEWIN: Thank you. My other question relates to you talked about OPAN and its members doing community education, workshops and so forth with older people. What about the cohort that some describe as hard to reach or we have often sometimes described as kept out of reach? What sort of gap do you think exists? Do you think there is a significant gap of people who are being kept out of reach and not able to access OPAN information, OPAN services? How would you describe that?
MR GEAR: So, I take that at two levels. There are people who aren't provided the information, who are starting to engage with services. One of the most difficult groups we find to reach are people who are receiving home care packages, because often it is the aged care provider that is, I suppose, the gatekeeper of information through that. Sometimes in a positive way where they will provide information, other times where that information and someone's rights is not being provided.
Where we also see these large challenges is in what we term, under the Aged Care Act, special needs groups. People who are homeless, people who are veterans. People from culturally and linguistically diverse backgrounds where often it is family members who are the gatekeepers. So, we need greater access out in the community to see those people where they are at. The other group is those who aren't able to use digital resources or the internet, and so we need to be able to provide this information on rights in the language that people use and at locations and face to face where they are.
The other group we see that doesn't have an access to rights is our First Nations people. We are working with our providers in the Northern Territory to translate the Charter of Aged Care Rights into language and into audible form so that First Nations Aboriginal people can understand that they have the same rights as every other Australian.
COMMISSIONER McEWIN: Thank you.
CHAIR: Commissioner Ryan.
COMMISSIONER RYAN: Thank you, Mr Chair, but I don't have any questions other than thank Mr Gear for coming and giving us plenty to think about.
CHAIR: Mr Gear, thank you very much for your clear and, if I may say so, powerful presentation. Can I perhaps add this perspective. Anyone who has had elderly parents now, that will be all of us hopefully, ultimately knows that there are very difficult and very complex situations, very nuanced. You said, very commendably, that when you were supporting your father, you made it clear that it should be his decision. Let me give you an illustration of something that very commonly happens.
Dad wants to drive. I'm not talking about your father. I'm talking about an elderly dad. And you know perfectly well that if dad drives, he's not only a risk to himself he's a risk to everybody else. "Dad, we really need to take you to a doctor to be evaluated so that the relevant driving authority can determine whether you are fit to drive.” "Absolutely not. I'm perfectly fit." Life is very complex and very difficult in that situation, isn't it?
MR GEAR: It is, Commissioner. And I think, though, my individual rights and my right to drive also need to respect the rights of others in the community to live safe as well. And so when we have discussions with people around maintaining their independence and the situations exactly what you are talking about there, we explain to people that balancing of rights, and my rights and the community's rights.
But we also look at the alternates, and sometimes we find it is about the complexity of the system and people not being given other options to maintain their independence that is why that person is holding on to their right to drive. So, I think if we framed it under other options to maintain your independence, we would have people understanding that their right to exercise their right might impact on others in the community and their rights to live safely as well.
CHAIR: Yes, but my point is rather different. It is sometimes will and preferences, once ascertained, may involve risk not just to that person but to other people as well. And it's it is perhaps a someone more complicated and nuanced position than saying someone's will and preferences must be accepted in all circumstances.
MR GEAR: Yes, there may be times that we need to look at those rights and limiting those rights as well. Yes.
CHAIR: And when we come to aged care, again, anybody who has had parents in aged care, parents whose cognitive abilities have been impaired, knows very complex and difficult situations as when someone in aged care says, "I want nothing to do with my spouse. I don't want my spouse to visit me" and it's been a loving relationship up until that point of cognitive decline.
All I'm pointing out is there is some really difficult situations that won't necessarily be resolved satisfactorily by saying we will respect will and preference when sometimes this can cause all sorts of harm, ultimately to the person concerned and to others. So, I am just making the point that while I understand the force of what you've said and I understand it directed to service providers and it has it's a very commendable approach, that I just wonder that there may be some of circumstances where a little more nuance is required.
MR GEAR: I agree, and I think that's about taking the time and I think that we to have the conversations to understand those varying perspectives and the varying impacts and to work with the older person themselves around some of those impacts. This takes investment, it takes time, and it takes nuance, as you highlight.
CHAIR: Alright. Thank you very much for your evidence and thank you also for using some of the work of the Royal Commission. That's very refreshing, to see an organisation use some of our work to good advantage. And I hope that you continue, and your organisation continues to do so. Thank you very much for your assistance.
MR GEAR: Thank you.
<THE WITNESS WITHDREW
MS EASTMAN: Thank you, Chair. Thank you, Mr Gear. Can I ask you, Chair, to receive Mr Gear's statement and accompanying material into evidence and mark this bundle as Exhibit 30.176 to 30.190.
CHAIR: Yes. Mr Gear's statement and accompanying documents will be marked into evidence with the markings Ms Eastman has indicated.
<EXHIBITS 30.176 TO 30.190 STATEMENT OF CRAIG GEAR DATED 16/11/22 AND ACCOMPANYING DOCUMENTS
CHAIR: Ms Eastman, do we now take a morning tea break?
MS EASTMAN: Morning tea. If we perhaps can resume at 11.30.
CHAIR: Yes. We will resume at 11.30. Thank you again, Mr Gear.
<ADJOURNED 11:10 AM
<RESUMED 11:32 AM
CHAIR: Yes, Ms Eastman.
MS EASTMAN: Thank you, Chair. Just give me a moment to
MS EASTMAN: organise here. There's a lot of papers. So, our final witnesses for the hearing are from the NDIA, Scott McNaughton and we welcome Mr McNaughton back and Mr Sam Bennett, and we also welcome Mr Bennett back. I will just check. They're taking affirmations.
CHAIR: Thank you. Mr McNaughton, thank you for coming back to the Commission, and we appreciate the statement that you have provided together with I think, it's Dr Bennett, isn't it?
DR BENNETT: Yes, Chair.
CHAIR: Thank you, Dr Bennett, for your contribution to the joint statement that we have and that we have had the opportunity of reading. We are also grateful for your willingness to give oral evidence this morning. If you would each be good enough to follow the instructions of the Associate who is to your right, she will administer the affirmations to you.
ASSOCIATE: I will read you the affirmation. At the end, please say yes or I do. Do you solemnly and sincerely declare and affirm that the evidence which you shall give will be the truth, the whole truth and nothing but the truth?
MR McNAUGHTON: Yes.
DR BENNETT: Yes.
<SCOTT McNAUGHTON, AFFIRMED
<SAM BENNETT, AFFIRMED
CHAIR: Yes, thank you very much. I will now ask Ms Eastman to ask you some questions.
<EXAMINATION BY MS EASTMAN SC
MS EASTMAN: Thank you. So, I will start with some introductions. Mr McNaughton, can I start with you. You are Scott McNaughton.
MR McNAUGHTON: Yes.
MS EASTMAN: And you hold the position of General Manager, National Delivery at the NDIA.
MR McNAUGHTON: That's correct.
MS EASTMAN: You have provided statements to the Royal Commission at previous hearings, including a statement dated 7 May 2021?
MR McNAUGHTON: That's correct.
MS EASTMAN: Dr Bennett, you are Dr Sam Bennett.
DR BENNETT: Yes.
MS EASTMAN: And you are currently your current role at the NDIA is General Manager, Policy Research and Advice.
DR BENNETT: That's correct.
MS EASTMAN: And that's a role that you have held since 7 March 2018. Is that right?
DR BENNETT: Correct.
MS EASTMAN: And you have set out in the joint statement your particular areas of responsibility of paragraph 10. Is that right?
DR BENNETT: That's right.
MS EASTMAN: So, together you have prepared a joint statement dated 11 November 2022. Right?
DR BENNETT: Yes, that's correct.
MS EASTMAN: And there are some amendments to the statement which are set out in corrigendum to joint statement dated 23 November 2022.
DR BENNETT: That's correct.
MS EASTMAN: And are we right in understanding that the corrigendum identifies some corrections to paragraph 72, paragraph 153 and paragraph 170. Is that right?
DR BENNETT: Yes.
MR McNAUGHTON: Yes, that's correct.
MS EASTMAN: Chair, I won't trouble you by going to the actual paragraphs and working through them, but if you have the corrigendum with you, you should be able to follow. So, other than the matters identified in the corrigendum, can we take the joint statement as true and correct?
DR BENNETT: Yes.
MR McNAUGHTON: Yes.
MS EASTMAN: I will leave it to the two of you to decide who would like to answer the questions. One of you is going to have to answer the questions, so there is no alternative option on that front. So, we are aware that you haven't been physically in the hearing room this week except for today, but have you both followed the proceedings over the course of the past week?
DR BENNETT: Yes.
MR McNAUGHTON: Yes, we were in yesterday when Dr Pearce was on as well.
MS EASTMAN: Okay, sorry I didn't see you then. So, in terms of some of the key themes that have emerged during the course of the hearing this week, relevant to the NDIA has been, it seems, a trend across all of the jurisdictions in Australia that there has been an increase in the appointment of Public Guardians or Public Trustees or State Trustees to assist a person with disability navigate the NDIA. You have heard that evidence?
DR BENNETT: Yes.
MR McNAUGHTON: Yes.
MS EASTMAN: And I think Ms Osborne from New South Wales said yesterday that the increase has been in the order of 367 per cent, which sounds quite large. You would agree?
MR McNAUGHTON: Yes.
MS EASTMAN: Some of the other trends are or themes, I think, emerging from the course of this week is about at what point does substitute decision making based on best interests end and supported decision making start, and the extent to which substitute decision making should be a last resort or, in some cases, never used. So, those have been clear trends. So, I want to ask you about some of the issues related to the trends and also picking up on matters set out in your statement.
So, I want to start with the NDIA and the very purpose of the NDIA. You've set out in the joint statement at paragraph 14 the objects of the NDIS Act. And it may be helpful to remind ourselves of what the objects of the Act are. So, it's in conjunction with other laws to give effect to Australia's obligations under the Convention on the Rights of Persons with Disabilities and, in subparagraph (b):
"...to enable people with disability to exercise choice and control in the pursuit of their goals and the planning, delivery of their supports."
So, you've both highlighted these objects of the NDIS Act in your statement. In terms of the way in which the NDIS operates to give effect to Australia's obligations under the CRPD, that must take into account Article 12 of the CRPD. And I assume you are both familiar with Article 12. But you are also familiar that the Australian Government has an interpretive declaration in relation to Article 12. Does the existence of the interpretive declaration create any impediments for the NDIA in relation to working to the objectives of the Act?
DR BENNETT: I'm not sure that it does, Counsel. Partly for some of the reasons you've outlined in respect that the objects and principles in the NDIS legislation are, by and large, very well aligned with the ethos and intent behind the Convention as it relates to the primacy of participants' choice and control, including in taking reasonable risks, around the rights to autonomy of decision making and to be partners in decision making, and around the right to have communication and be communicated with in a way that makes sense for each individual.
I would say that supported decision making is a key concept within the legislation which starts from the assumption of capacity for each of our participants, and in the way that we work with participants from pre planning through planning to plan implementation and review, we, under our legislation, are able and directed to look at a range of ways in which each individual's decision making capacity can be supported, and that might be through just the acknowledgment and identification of informal supports or family members in the participant's life that can play that role.
It might be through referrals to community or mainstream supports or advocacy supports, where those are available, or it might be through the funding of reasonable and necessary supports in the participant's plan. And those in that regard can range from various levels of support coordination to help the participant to connect with providers and navigate the market, to plan management to help with the administration of the plan and the payment of bills, through to a range of capacity building supports to assist the participant to develop their or maintain their decision making capacity.
Only if those supports prove insufficient to enable someone to have support for their decision making are representative decision making options considered, which under our legislation are nominees, and there are a different variety of nominees and a range of roles that they can play in supporting a participant with their decision making. The language in the Act around that relates to their requirement, and, indeed, these are duties on a nominee to listen to and understand the wishes of a participant and to act in such a way as to support their personal or social wellbeing.
And those duties extend to consulting with others in the participant's life in determining what those wishes might be, through to also having an ongoing role in supporting the participant to build independence in their decision making. So, whilst that doesn't directly reflect some of the language in Article 12 at present around will and preferences, I think it provides a framework within which we can work towards a supported decision making approach.
MS EASTMAN: Thank you for that. I just wanted to know whether the interpretive declaration has any impact. So, I take it by that that the answer is no.
DR BENNETT: I think we are able to work within our legislation to realise the ambitions of the Convention, yes.
MS EASTMAN: And is working within the legislation, subparagraph (b) has the objective of not just recognising choice and control but the objective of enabling people. Would you accept that to meet the objective in subparagraph (b) that enabling people with disability to exercise choice and control is to enable a regime based on supported decision making rather than substituted decision making?
DR BENNETT: I would accept that, yes.
MS EASTMAN: Right. Now, the tenor of the NDIS Act is that the starting point must be people with disability are presumed to have capacity to make decisions that affect their own lives is that right?
MR McNAUGHTON: That's right.
MS EASTMAN: And in terms of that presumption of capacity, are we right in understanding that the NDIA does not have a working definition of capacity?
MR McNAUGHTON: That's correct. We look at it at a very much an individual basis.
MS EASTMAN: You have said in paragraph 42 that you do not define capacity or decision making capability as a static concept. So, you see that?
MR McNAUGHTON: Yes.
MS EASTMAN: But my question really is directed to whether you have any definition, any working definition of "capacity" and/or decision making capability.
MR McNAUGHTON: At the moment, we don't have a definition of capacity because what we do is through our education of our staff and our partners is to really work individually with that participant about their needs, their informal supports, their decision making capacity and desires rather than have a formal definition. But I know that is something that's been explored as part of the supported decision making policy work that Dr Bennett has been leading.
MS EASTMAN: Would you
DR BENNETT: Counsel, if I may add, we won't have a definition of capacity under the new policy either. And, in fact, that's primarily as a result of quite strong feedback that we have had through a process of public consultation on a draft supported decision making policy last year and through the subsequent engagement with stakeholders throughout the course of this year.
And that advice was that it is better to start from both a presumption of capacity but also a presumption that everybody will need some form of support for decision making at some point in their life, and, therefore, rather than to seek to define and measure capacity, to actually flip that on its head and look at, well, what's is the support need that somebody has around decision making. In part, because if you define capacity, then there is an inherent risk that, in someone being labelled as lacking it, they may have a curtailment of their choice and control that isn't intended. So, I don't think we are likely to address that particular issue through our future policy either.
MS EASTMAN: The section 17A of the Act provides that people with disability are assumed, so far as it is reasonable in the circumstances, to have capacity to determine their own best interests and to make decisions that affect their lives. Is it not difficult to have to have no working definition of capacity in terms of understanding the way in which section 17A operates? That section has got all these qualifiers in it.
There is an assumption, as far as possible it's reasonable in the circumstances, to have capacity to determine best interests and make decisions that affect their own lives. Doesn't that legislation require an understanding of capacity in relation to what will be a determination of best interest or what would be a decision to affect their own lives? You need a working definition, don't you?
DR BENNETT: I would say, Counsel, on that, that as the written evidence suggests, we seek to address that issue on very much on an individual by individual basis and through some of the training that is provided to our staff and planners, which Mr McNaughton can talk to in relation to how we understand those terms. But I would again say that we have had albeit recently, fairly strong advice that that shouldn't be our starting position in considering how we better support participants with their decision making.
MS EASTMAN: I'm not suggesting that there's a working definition of capacity and as a person comes through the door, either as an applicant or as a participant, that you constantly are assessing their capacity one way or the other. But there are points in time where the decision making may be taken over by other people and the question is when and how does that occur and does capacity affect when and how that occurs. And if that's the case, surely you have to have some definition of capacity so that you've got a starting point in terms of, as you say, you deal with it on a case by case basis.
MR McNAUGHTON: As Dr Bennett said, Counsel, there's a range of materials and resources that we provide to staff to assist with those conversations. The Participant Risk Assessment Tool is one of those. There's a range of questions we ask if we are talking to a participant or potentially looking at a appointing a nominee. And we obviously take into account what's the request from the participant around having someone support their decision? The NDIS rules around nominees are quite clear in terms of participant choice around that as well. So, it's not a linear model. It's more one that we train our staff and partners in engaging very specifically around the individual needs of the participant.
MS EASTMAN: But as you say in paragraph 43, NDIA planners and NDIS partners in the community work with participants and that people taking on these roles may need to determine capacity and decision making capability. Is that right?
MR McNAUGHTON: Yes, that's part of the engagement and through planning conversations.
MS EASTMAN: If there's no definition and no clear framework for determining capacity and decision making, then is it sort of left really on an ad hoc basis and it depends on the skill of the relevant person, be they a planner or a partner?
MR McNAUGHTON: The Guided Planning Questions, the Participant Risk Assessment Tool gives structure and guidance to those questions and those planning conversations that help provide a framework to work through those decisions, whether or not a person needs support with decision making, whether a person needs to or would like to have a nominee appointed or may need supports in their plan. So, there is a range of structured supports through the planning process that we provide to staff and partners to help with that.
MS EASTMAN: And is some of the information that you provide the information described at paragraph 182 through to 188?
MR McNAUGHTON: Yes, that's correct.
MS EASTMAN: Alright. So, the starting point is the presumption of capacity to make decisions that affect a person's life. Is that also a presumption that people will know what is involved in exercising choice and control? So, not just decisions but also what choice and control means.
MR McNAUGHTON: Yes. So, for new participants into the scheme, we do a lot of work with them to understand as Dr Bennett was alluding to, the scheme is very, very different to previous schemes, Where this scheme funds an individual, their reasonable and necessary support needs. It's not previous systems funded service providers. We are now funding an individual and the individual has that choice and control. So, we have we do a lot of work with planning booklets and preplanning guidance, with participants to help them understand what it means to have choice and control over your supports. And participants who are in previous systems may not have had that choice and control previously.
MS EASTMAN: So, does choice and control mean will and preferences? It the same thing?
MR McNAUGHTON: In the context of how people have choice and control over how they will access and use their supports that we fund, we see key bits of choice and control such as which provider will I use. I don't have to use the one that's been block funded. I can use the one of my choice. I have control over which parts of my funding I will spend. Some parts of participants' plans are very flexible. They can have choice over how they will use that off their plan. So, that's the sorts of choice and control in a context of spending or engaging with your NDIS supports that we need to continue to build participants' understanding of.
MS EASTMAN: So, assume I'm going to talk about adult participants rather than children. It's the case, isn't it, that the starting point should be for an adult participant that this should be a scheme that an adult participant should be able to use and navigate without needing a nominee or somebody to operate as a substitute decisionmaker. Is that right?
MR McNAUGHTON: Yes, that's correct.
MS EASTMAN: And in terms of supporting adult participants to use the scheme, when you have talked earlier about the booklets and the information, is that the type of information for an applicant for a person coming into the scheme to know how to navigate and work out and understand how the scheme operates?
MR McNAUGHTON: Yes, Counsel. So, there's various resources that we publish and support. There is also other advocates within the network that can connect and support participants with their journey with the NDIS. And also our local area coordinators do a lot of work with prospective participants or potential participants to help them understand what supports may be available in the NDIS or within the community and mainstream sector.
MS EASTMAN: Right. The Act recognises that there may be circumstances where, as you've said in paragraph 17, it may be necessary for a person to be appointed as a nominee to act on behalf of or make decisions for an adult participant. Is that right?
MR McNAUGHTON: Yes.
MS EASTMAN: So, using that language there, that there may be circumstances that are necessary for the appointment of a nominee, as a starting point, is it the approach within the NDIA that a nominee only be appointed as a last resort that the participant otherwise is unable to make decisions or unable to navigate the scheme?
MR McNAUGHTON: Yes, that's correct.
MS EASTMAN: And how do you support a participant and maybe a participant's family in determining when and how at what point that last resort has been reached?
MR McNAUGHTON: Yes, so, Counsel, as part of the planning conversations, not only the first plans but subsequent plans, or engage with participants around conversations such as who supports you in your life to help make decisions and engage with your plan. Do you need such supports or not? And for many participants, they will have support, family traditionally it's family who can help them with their conversations.
They don't act on their behalf, but they help them make decisions, which is really, really positive. Then there might be some participants who need some additional support. And that's where we get into discussions around nominees, and as the nominee rules go to, is nominees can be appointed at the request of the participant or in discussion with the participant or they can be appointed by the agency, what we call CEO initiated appointments.
MS EASTMAN: I want to ask you about that separately. But if we start from the participant's perspective, is one aspect of exercising choice and control that the participant may say, "I would like to have a nominee and I would like that nominee to assist me either as a plan nominee or a correspondence nominee." Is that right?
MR McNAUGHTON: Yes. Yes. That's correct.
MS EASTMAN: Does the participant have to justify to the NDIA that they would like to have a nominee?
MR McNAUGHTON: They don't have to. The rules are clear that it can be the preference of the participant, but we would start with a conversation around can they be supported through other informal supports without having a nominee appointed. But ultimately, if the participant chooses and exercises that choice, we will usually make that decision.
MS EASTMAN: So, just and I think we have given you a copy of the rules, so rule 3.3 says:
"Appointment of nominees will be justified only when it is not possible for the participants to be assisted to make decisions for themselves. Appointments of nominees usually come about as a result of a participant requesting the nominee to be appointed.”
Alright. Forgive me if I don't understand this. There seems to be a slight contradiction in those two sentences. The first is:
"Appointment of nominees will be justified only if it's not possible for the participant to be assisted to make decisions for themselves.”
That's the first.
MR McNAUGHTON: Mmm.
MS EASTMAN: But then:
"The appointment of nominees usually comes about as a result of the participant requesting the nominee to be appointed.”
Does the application that the rule just that part have that contradiction, that, on one hand, it is only justified where it is not possible, but on the other hand, it only comes about as a result of the participant requesting the nominee? So, who makes the decision on this? You have got to apply these rules.
DR BENNETT: I would agree, Counsel, perhaps that's not the clearest language. I think the way we would and our interpreting that is that the concept of an appointment being made only where it's not possible for the participant to be assisted to make decisions for themselves relates more to the instances where the NDIA might take the initiative to make such an appointment, whereas the second half of the sentence refers more to the instances where someone may request that that appointment is made.
And as Mr McNaughton said, there are various checks that we would still make there to ask, firstly, why someone thinks that's necessary and to explore the other supports that might be reasonable and necessary to support their decision making before simply agreeing to that appointment.
MS EASTMAN: At a very practical level, is it the sort of usual practice that the way a nominee may be appointed really comes at the request of the participant? Is that the usual way?
MR McNAUGHTON: Usually in the planning conversations, it's about in fact, the Planning Conversation Guide, we don't ask do you need a nominee. We ask do you need support in helping you make decisions. And then we expand from there. So -
MS EASTMAN: You don't sort of say, "If you want a nominee it's only going to be justified if it's not possible for you to make decisions for yourself.” You don't say that to people?
MR McNAUGHTON: No, no. It's a much more engaging conversation guide that we with our planners and LACs with the participant about who supports them or do they need support in making decisions each day.
MS EASTMAN: So, what will be the purpose of a rule that says speaks to the appointment of the nominees will be justified only when it's not possible for the participant to be assisted to make decisions for themselves?
MR McNAUGHTON: The intent, I think, of the provision is saying that we want to move we want to start with the presumption that people can be supported to make decisions on their own, but where they can't and we have explored that, then we can move to the nominee.
MS EASTMAN: Just within encapsulating in rule 3.3, it seems to do the very thing that we have been exploring this week, is to pitch almost as a binary choice between substitute decision making because you cannot make decisions for yourself, and then supported decision making which is where the assumption or the presumption that you can make decisions for yourself. Does it this doesn't really speak to the language of supported decision making, does it, in terms of Part 3, which is whether it is necessary to appoint a nominee.
MR McNAUGHTON: Further in the rules, Counsel, there's a really important provision as well around that if a nominee is appointed, they must ascertain the wishes of the participant in making decisions and they must act in the best interests of the participant in terms of personal and social wellbeing.
MS EASTMAN: So, if I can just forgive me nor interrupting. That sounds like the language that we have heard all week for of the basis for substitute decision making, which is an incapacity plus a best interests model. And so once you start to sort of mix these concepts, it gets difficult, doesn't it, for people on the ground to apply this in practice.
MR McNAUGHTON: It can be, and it is also important within the construct of a nominee model that a person may just need a nominee to help them understand be their letters. So, they might have a correspondence nominee because they would rather someone look after their mail and their letters. Or they have a plan nominee who helps with all aspects of the plan. Or they might have a combination of both. And it could be a timed bound nominee arrangement, or it could be an enduring arrangement. So, each one of those is a conversation individually with the participant about their desires.
MS EASTMAN: To what extent I'm just a little bit on Part 3 because I wanted to ask you about understanding when it's necessary for a nominee to be appointed and the process of appointment. To what extent do these rules build in reasonable adjustments in the way in which the NDIS operates as a service and as a scheme? I'm not sure the language of reasonable adjustments appears in the rules, and I haven't seen reasonable adjustments as a concept in some of the material that you've got.
Does reasonable adjustments come into this? And I will give you an example. If you say somebody might need some assistance with reading correspondence or understanding correspondence, then to do that, you have a nominee. Would not a reasonable adjustment require, at the NDIA end, to think about an adjustment to provide correspondence in a form that is accessible to the person who needs to read the correspondence?
So, the adjustment comes from the way in which you provide the information rather than, "Well, I think the person needs a nominee." So, how does that how do reasonable adjustments fit in at this critical point of whether a nominee should or shouldn't be appointed?
MR McNAUGHTON: It could be that example is a good one. Another one is, for argument's sake, the participant needs assistance in helping manage their budget. They might need help understanding their plan, how to manage their budget, how to manage their finances. So, they might agree to appoint a nominee to do that for a period of time, and at the same time we're funding capacity building supports to help build someone's capacity to help manage their finance and manage their budget. So, there may be a period of time, and that might be when we might time bound and keep reviewing the any appointment whilst we are building person's capacity to hopefully step down from that appointment because we have done the capacity building in the life of the plan as well.
DR BENNETT: I think, Counsel, just to go specifically to your point, I don't think the existence a provision related to a correspondence nominee in any way precludes the agency's requirement to communicate in a way that is accessible and, indeed, we put a lot of time and energy into into that. So, I don't think it's one or the other. I think these things can work in tandem.
MS EASTMAN: But you would accept a proposition, would you not, that if reasonable accommodations or reasonable adjustments are part of the support for a person to be able participate in the scheme, that that needs to be done at the point before we start talking about whether the person needs a nominee or not? That's where the adjustments start to have to really do some work. Is that right?
MR McNAUGHTON: Yes, that's true. As well as it's also true that there may be a period of time that we need to continue to invest in building someone's capacity. And that may take take time over the life of the plan, over the there might be some capacity building activities in each that the participant has to continue to increase their independence. But I agree, reasonable adjustments should be taking place but there is also a journey around capacity building.
MS EASTMAN: So, there are also provisions in the Act. I don't need you to go to the particular provisions but around section 78(5), 86 and 87. And that empowers the CEO to appoint a nominee for a person, and rule 3.14 sets that out as well. In what circumstances does the CEO take the step of appointing a nominee for a participant, that is, against the participant's will and preference?
MR McNAUGHTON: Counsel, it is very limited. It's not a decision the agency takes lightly. It may well be where there is conflict in between potential family members around support for the participant. There could be conflict between so other people who support a person, for argument's sake, may disagree with how the person is making decisions, and there might be a time limited period that we would put in place a nominee. We would still always discuss that with the participant and work with the participant to have a nominee in place for a period of time whilst we are able to build capacity or settle down some of those other issues that might be in place.
MS EASTMAN: Would we be right in understanding that those circumstances, where it's a CEO appointed nominee, that it's probably not going to be for the correspondence? It's more likely to be for the plan itself?
MR McNAUGHTON: Yes, that's correct.
MS EASTMAN: And accepting that the NDIS legislation empowers the CEO to take this function, would you agree that this is a function quite similar to what we see with Tribunals making decisions for guardians or financial administrators to be put in place?
MR McNAUGHTON: Yes. That's correct.
MS EASTMAN: So, it's quite a significant power that the CEO can exercise?
MR McNAUGHTON: Yes. It's quite a decision making principle of last resort, almost, and when we look at that, it's very much something we would like to avoid, but the Act provides if there are circumstances that warrant it.
MS EASTMAN: Is this a power that can be delegated?
MR McNAUGHTON: The CEO delegates that power to agency staff.
MS EASTMAN: And what’s the level of delegation? Do you know?
MR McNAUGHTON: I will have to check that, sorry. I will come back to you, Counsel. We have an instrument of delegation for those decisions. I'm not sure exactly.
MS EASTMAN: So, this is not a very rare exercise of power that is only exercised by the CEO without any delegation. It may be through the organisation at different levels. Is that right?
MR McNAUGHTON: Yes, staff trained with that delegation level to perform those tasks.
MS EASTMAN: And in terms of the way in which this power is exercised, are there particular guidelines that have to be adhered to?
MR McNAUGHTON: Yes, there are.
MS EASTMAN: And does the exercise of this power require the CEO or her delegate to make a determination that someone does not have capacity to participate in the scheme?
MR McNAUGHTON: No, that's not part of the decision making process.
MS EASTMAN: So, does the CEO have to make any determination as to whether or not the person meets these elements that are set out which we looked at earlier in 3.3, which is, it will be made because it's not possible for participants to be assisted to make decisions for themselves.
MR McNAUGHTON: Yes. And there's some supported operational guidance and practice guidance that go to delegates to help with those decisions.
MS EASTMAN: So, how do the delegates make the decision that the person cannot make decisions for themselves, which seems to be another way of determining capacity?
MR McNAUGHTON: In the very and it will be good if I could get some numbers and provide to Counsel afterwards about how many decisions we make because
MS EASTMAN: I've got a question about that.
MR McNAUGHTON: Okay.
MS EASTMAN: I was going to ask you how many because you've given us some information about the number of participants with nominees, but I did have a question to say how many of those nominees are as a result of the CEO exercising the power or the CEO's delegate.
MR McNAUGHTON: Yes, I'm not sure I have that within. But I will try to get that data for you, Counsel.
MS EASTMAN: But coming back to how it's made. And I suppose what I'm trying to do is sort of look at what the Royal Commission has heard over the course of the week about the structures that exist in Tribunals for making decisions. Those questions of what evidence is required, what onus of proof, if there is any, how the concept of capacity and incapacity are determined. In effect, the provisions in the Act and the rules give the CEO almost the same sort of power or responsibility in relation to participating the NDIS. And I want to tease out, if we can and you may not be able to answer this what's different.
MR McNAUGHTON: Yes. It's important, Counsel, to see that as very much a final safeguard around before and that's also before there would be a guardian appointed or there are guardians recognised in the NDIA system. So, we always are starting with the conversation of a participant. There are some times we are not able to communicate with the participant for various reasons hospitalisation, justice settings, various things like that where it may be required that the CEO would appoint a nominee that hasn't been requested by the participant. And there are some very clear guidance we provide to staff around when and why you would do that and what are the processes still of engaging with the nominee. So, there's a series of questions we ask the nominee, a series of conversations we still have with the participant to help with those decisions.
MS EASTMAN: And who would be the nominee in those circumstances?
MR McNAUGHTON: It could be it could be someone else who helps the person, an informal carer, maybe not an immediate family member. Sometimes, as I mentioned, if there is conflict between the existing nominees and the we might need a more neutral person who is appointed as a nominee. So, usually someone still who has a relationship to the participant, not a service provider or a support coordinator but someone who is known to or is a is a has a relationship with the person.
MS EASTMAN: So, would the CEO ever in any circumstances say that this is not a function that she or her delegates could exercise, but it's something that you should go to the relevant Tribunal in the local state or territory jurisdiction and to ask in a quasi judicial process for a nominee to be appointed?
MR McNAUGHTON: Potentially, yes. If the issues between the parties are that intractable, we may engage with the Public Guardian around consideration of them intervening.
MS EASTMAN: And that's has been done?
MR McNAUGHTON: Sorry.
MS EASTMAN: Has that been done, to your knowledge?
MR McNAUGHTON: Yes. Yes. My staff regularly have case conversations with the guardians in each of the jurisdictions around matters like that.
MS EASTMAN: And looking at the rules, so 3.14, the CEO can exercise this power even if there is already a court appointed decision maker in place. So, there may be a Public Guardian or there may be a family member who is acting as guardian. It may be a family member who is an administrator or a state trustee. So, the CEO can still exercise the power to appoint a nominee even in circumstances where somebody has got the authority under state or territory law to do substitute decision making. The CEO can still appoint a nominee, notwithstanding that person's got that legal authority to do so. How does that work in practice?
MR McNAUGHTON: Yes, that's correct. For the most part, when there is a guardian, we will also talk to the guardian about are they the most appropriate person to be the nominee? For the most part, that answer is yes. But it's not always. Sometimes there are other people that are involved in the person's life who may be the correspondence nominee, but that's a conversation we have with the guardian and the participant and whoever may assume that role as a nominee.
MS EASTMAN: Alright. Can I draw your attention to paragraph 74 of your joint statement where you talk about the NDIA being cognisant of the complexity of interactions between state and territories around substituted decision making, and you refer to the review of the NDIS Act conducted by Mr Tune in December 2019. And there was reference to the interaction between the NDIS and state and territory guardianship legislation as a:
"...primary policy matter to be included in forward work program.”
And you have referred there to:
"...the Commonwealth, through the August 2020 response to the Tune review, recognising there are opportunities to clarify the noted areas and committed to working with states and territories where appropriate to consider this further.”
So, that's what you say in paragraph 74. Can you tell the Royal Commission what work has been done by the NDIA in relation to addressing the issues raised by Mr Tune, the Commonwealth's response and this commitment to working with states and territories to consider the issue further?
DR BENNETT: Counsel, I believe Mr Tune's recommendation was the first in his review, and, as you said, the Commonwealth Government supported that. But in so doing it tasked the Disability Reform Ministers to progress that as part of its work program.
MS EASTMAN: Has anything happened to date?
DR BENNETT: That would be a question for government, but I'm not sure.
MS EASTMAN: Alright. Has anything internally from the NDIA's perspective been done to address those issues? Because the NDIA is on the frontline of this with the participants who are subject to not only the rules and the NDIS Act law, but also their relevant state and territory laws as well. So, what's been done?
DR BENNETT: It's hard to know in practical terms, Counsel, what we could do about that, aside from the sorts of sort of regular conversations that Mr McNaughton referred to with public guardians and others where it relates to changes or alignment or greater consistency across different legislative frameworks. That's not within our jurisdiction. We need to operate within the framework of the NDIS Act. So, yes, I'm not sure practically what we would be able to do in that regard.
MS EASTMAN: So, accepting that it's not within your jurisdiction, for the participants, though, they live in these different jurisdictions, and so if there are gaps then it has a direct impact, doesn't it, on the human beings involved?
DR BENNETT: Yes.
MS EASTMAN: So, is there not a responsibility for the NDIA to look at these issues and be proactive in the way in which you deliver the services for participants to say where are the gaps? What is happening and how can we bridge those gaps. I mean, you have been listening to and I may say from the body of material the Royal Commission has, it's the tip of the tip of the iceberg in terms of what the Royal Commission has heard.
MR McNAUGHTON: Yes, Counsel, clearly throughout the course of this week, we have heard of the different issues being raised by the different public guardians and advocates around the country. We are at the moment at a practical level working with each of them to put in place data sharing agreements. That would be a good start, to have good open exchange of data. We have strong local bilateral connections and meetings around participants.
But it did in listening to Dr Pearce around some of those issues around having designed service agreements and things, we just I think the Chair mentioned is that, you know, killing an ant with a sledgehammer having need a guardianship order to sign a service agreement. We would agree. There are better ways to do that without encumbering the resources of the guardian to do something like that. So, there are probably some things quite practically coming out of this we could do.
MS EASTMAN: But if you look at that in the context and I was going to take you through quite a few of the issues raised by the trustees and guardians, but the NDIA is in a position to do something about that in terms of if it's issues arising around the level of documentation and the way the information is conveyed or if it is around the way in which the legal requirements of contracts operate. That's not something that we heard the guardians or the public trustees can be doing. They are result really looking to the NDIA for some leadership on this. Would you agree with that?
MR McNAUGHTON: Yes, I think some clarity around those requirements would be really useful for all parties. Because listening to that, I mean, as I think I've told the Commission previously, the only formal requirement for a service agreement is someone who is in specialist disability accommodation. They, you are encouraged for other supports but certainly not for all supports. And if we are seeing providers require guardians designed service agreements, then there is an education piece that we can work with the Commission to try and influence that, because we don't want guardians being overwhelmed by signing paperwork that may be able to be dealt with in other ways.
MS EASTMAN: I mean, there are two sets of guardians. There's the sophisticated Public Guardians who have got a lot of resources and knowledge and skill around these issues, but often the guardians are family members. And you may have heard Austyn's evidence yesterday. Had never even heard of guardianship but she knew there was something that she needed to do for her brother and then took on the complexity, not only of her responsibilities as a guardian under New South Wales law, but also her responsibility as the nominee for her brother under the NDIS arrangements.
So, it's not for her, it wasn't so much a need to be educated. It was a need for simplicity in a really complex system. Can I put to you, you as the NDIA are in the position of looking at the structure and the operation to identify where the complexity exists and to start to remove that complexity. Do you agree with that?
MR McNAUGHTON: Yes, in terms of administration of the NDIS, ourselves and the Quality and Safeguard Commission obviously with the role in providers are sort of custodians for the policy on behalf of government, and we are and continue to look at ways to simplify improved experience for participants.
MS EASTMAN: And to what extent do you bring people with disability into that conversation? And I don't know if you followed that evidence yesterday from the folk at CID who had some very concrete and practical examples about making information accessible. They weren't speaking directly to NDIS, but do you bring people with disability in to say this is how you make the complex simple?
MR McNAUGHTON: Dr Bennett night talk about co design and I can talk about some other things.
DR BENNETT: Within our legislation, the most sort of practical thing where we are doing to try and bring greater clarity and consistency in this area but also more broadly in relation to the scheme's approach to supported decision making and representative decision making is through the development that our evidence goes to of a new supported decision making policy, which has been a process that's been underway over the last two years and has involved some very deep engagement with the disability community.
I referenced earlier, I think, the national consultation we ran for 12 weeks last year on a draft policy that we had developed with input from a variety of stakeholders, and we had a really significant response to that. There was a lot of written submissions and many more people responding to a survey, and there were focus groups involved in that as well. One of the things we heard very strongly there was that it was very important in this area that we progressed to finalising that policy through a process of deep co design, and that's been the focus of the Agency during the course 2022.
We have had through that process a very close partnership with Inclusion Australia, who including a man and a participant of the NDIS with intellectual disability working with us to design and then deliver a series of focus groups with cohorts of participants that we would expect to benefit most from supported decision making, including those with intellectual disability and cognitive impairment and people with complex communication and support needs.
And that's been asking those groups what things would make the biggest difference for them in improving their experience of supportive decision making under the NDIS. We would be very happy and keen to provide that policy to the Royal Commission at the point that it is finalised, which is imminent, and it does, I should say, adopt the principles from the Australian Law Reform Commission report around supportive decision making, as well as the language around decision supporters and representatives within that, and I believe would very much sort of align with some of the proposals from the Royal Commission around this matter as well.
MS EASTMAN: One part of this is not just looking at what the solution might be, but to have a very deep understanding of what the drivers are that creates the complexity. And you've heard some of that this week in relation to whether it's the service agreement and that requires a guardian to do that, but it's also who is making the applications for guardians at the state and territory level agreement.
And we have heard a real mix that it may be sometimes service provider, sometimes support workers, sometimes social workers because somebody is in hospital and there's a concern about what their accommodation might be when they have an acute situation. So, as part of your work, not just looking at building capacity on supported decision making, but really digging deep into what the experience of the NDIS participants are where guardians are appointed, to ask who is making the applications, why, and whether looking at those things could be built into how the NDIA responds.
MR McNAUGHTON: Yes. Yes, that is an area that we have been looking at as part of the policy and also how what we are doing today around this. We have seen and I put this in the statement. There's around 23,000 participants in the NDIS who have a guardian appointed. It's about 4 per cent of the total population.
MS EASTMAN: Just on that. So, can I ask you because I was going to ask you about the numbers.
MR McNAUGHTON: Yes.
MS EASTMAN: And you've set out the numbers of participants with nominees. And we also asked you about the participants with guardians. So, Commissioners, this starts at paragraph 37 of the statement. So, you've told us there are over 500,000 participants, and then we asked you about the number of participants with a nominee, participants who have a guardian appointed, and participants who have both an administrator or a financial administrator appointed. So, you have given us some of those statistics. What I wanted to ask you, on table C, which is paragraph 40, is that you have got on the over the page:
"Participants with guardian listed in one or more of above.”
And that's 409,433 participants. Is that let's say round figure, 400,000 out of the 550,000.
MR McNAUGHTON: Yes.
MS EASTMAN: That's a very significant number, isn't it?
MR McNAUGHTON: It is. I just need explain the table because it is how the reporting is in our business system, Counsel. And I think this is really important for the Commission. In our system, we list guardians in the context of who might be a child guardian, a representative. So, that's why we've got who might be a carer, who provides care guardianship sort of care. The formal guardian appointment is the third line. So, that is where we have data that -
MS EASTMAN: So, that's where the 23s are.
MR McNAUGHTON: 23,000.
MS EASTMAN: And are these adults or
MR McNAUGHTON: This is the total population. Usually these are all adults, but there can be some 16, 17 year olds.
MS EASTMAN: So when you mean guardian here you mean appointed by a Tribunal in a state
MR McNAUGHTON: State and territory.
MS EASTMAN: And would that cover both guardian and financial administrators or
MR McNAUGHTON: To the amount that we know that within our data, that's that figure.
MS EASTMAN: Do you collect separately guardians and financial administrators? Or are there they sort of swept up in one?
MR McNAUGHTON: They will be swept up in one. Having those data sharing agreements is obviously going to give us better clarity of that, but at the moment it's swept up together.
MS EASTMAN: Just looking at that table at number looking at that total table, where you have got carers or mothers or fathers or grandmothers or grandfathers, they are for adult participants. Is that right?
MR McNAUGHTON: They mothers and fathers there could be both. They could be children. So, they could be acting as a child representative for someone who is under the age of 18.
MS EASTMAN: So, are you able to because I just want to be clear, that we are talking about all participants, including children as well.
MR McNAUGHTON: In that table.
MS EASTMAN: And you have prepared this table on the basis of all participants, including children.
MR McNAUGHTON: Yes, I have.
MS EASTMAN: Do you have the data that would help us understand what the situation is taking children out so we are putting to one side parental guardian arrangements and parental responsibilities for the under 18s but for anybody over 18? Have you got that data? I just want to make sure that we don't misconstrue what these tables are intended to tell us.
MR McNAUGHTON: Yes, absolutely, Counsel. So, the top two tables, nominees are only appointed for over 18s. Under 18s have child representatives, which are reflected in the numbers below, such as mother listed, father listed, kinship care through grandparents. The guardianship listed is where it's a Public Guardian appointed under state and territory legislation. So, that becomes the 23,000 figure. That is of the total population of the NDIS population
MS EASTMAN: Of both adults and children?
MR McNAUGHTON: Adults and children.
COMMISSIONER RYAN: Can I ask for a clarification of that 23,000. It strikes me that it's quite possible that someone might enter the NDIS and not have a guardian. What we seem to be hearing in evidence in this hearing is that quite often the appointment of a guardian happens down the track when a person starts interacting with a service provider. Would the NDIS know that that person had a, acquired a guardian or would you only know that a person had a guardian operating with the in regards to their plan? Do you see the difference?
You could have a guardian interacting with a service provider. Has the same result if a person is under guardianship. You might know about it because that guardian may not you may not have indicated that you require that guardian. So, as a result, there could be a larger number than 26,000 that have got guardians as a result of what people generally understand to be the NDIS process, that is, the process of having a plan and implementing a plan.
Is it possible that your figures are because they do appear quite small by comparison to what we have heard in evidence. Is there a chance that your figures are much, much smaller number and much smaller fraction of what might be going on in your whole process?
MR McNAUGHTON: Commissioner, it's a good question. The figures that we have of 23,000 are the figures that we have been advised either through the guardian, through the participant or the service provider. That could change throughout the course of a plan. So, as you said, someone could actually get appointed a guardian mid point through an annual plan, and we will find out about that through the course of the interactions with the service provider or the support coordinator. They would need to advise if a guardianship has been appointed.
Of course, guardianship can also drop off. It could be time bound and, you know, this is an area of focus for us, but is there people being supported by guardians who could potentially be supported by a nominee or informal supports without the need for that. I did have a look, Commissioner, 12 months ago, and the number was 20,500. So, there was a net increase of 3,000 over the last 12 months. That is off the back of a net increase of scheme participants of just on 90,000.
So, the proportions are staying relative. I haven't gone back further years, but at this stage, what we can see through the data, it is still relative of about 4 per cent of the total population are under a guardian that we have through our data.
MS EASTMAN: I want to move to
CHAIR: Can I just ask one further point of clarification, please. When it refers to participants with a mother listed, does that mean that someone is listed as having a mother or that the mother has some particular role to play in connection with the participant's involvement in the NDIS? What does it actually mean?
MR McNAUGHTON: It essentially means, Chair, that the mother is listed, and they are part of the child representative they are a child rep for the participant. Same with the father or kinships through the grandparents. So, we list that as part of a child representative for the participants under the age of 18.
CHAIR: So, that implies that 350,000 at least 350,000 of the 550,000 are participants are children?
MR McNAUGHTON: Yes, I think the last data, Chair, there was about 269,000 participants under the age of 18. So, some of those mothers listed there would be now for children who have aged into adulthood and that is still recorded against their record.
CHAIR: Yes. Well, that's what I'm trying to understand. It doesn't seem to be mothers of current children. It seems to be mothers of current children and those participants who were previously children.
MR McNAUGHTON: Yes, it could be who are now adult participants, yes, that's right, Chair.
CHAIR: Yes. Alright.
MS EASTMAN: I don't think we asked you in preparation of the statement, but I understand you may be able to assist the Royal Commission in respect to the number of revocations where nominees have been appointed. Can you do that by references to CEO appointments, the numbers and how many are revoked and also by reference to nominees who may be nominated by the participant themselves? Have you got that information?
MR McNAUGHTON: Yes, Counsel. On average per month, we revoke around 220 nominees at the request of either the participant or the nominee.
MS EASTMAN: And does part of the process of revoking a nominee come as a result of a participant having the opportunity through their plan to develop capacity building skills in managing finances or decision making generally?
MR McNAUGHTON: That's correct. That's certainly the intent of that.
MS EASTMAN: Can I take you, then, to paragraph 83 where you said
"Where it is reasonable and necessary funding for capacity building supports may be included in a participant's plan to support them to build their decision making skills.”
And you have identified a range of areas in subparagraph (a) through to (h), and they broadly cover day to day lifestyle decisions, financial decisions, services decisions, accommodation decisions. Would it not be a necessary and reasonable support for every participant in the NDIS to have the opportunity to improve their skills in relation to building independence, exercising choice and control and the extent to which it involves decision making skills to enhance those skills. Wouldn't that be a reasonable and necessary support for everybody?
MR McNAUGHTON: Well, they are not default reasonable and necessary supports, but there are certainly a lot of participants who have significant capacity building supports in their plan. I think of the adult population, it's well a significant majority of the adult population has capacity building support coordinators in their plan. I think it's just under $1.1 billion dollars this year alone in support coordination funding in participants' plan to help build capacity, to help them navigate the NDIS and engage with their supports, as well as other funding around building budget awareness, managing finances.
And then each participant might have some goals. We heard throughout the course of the week, to learn to catch public transport or drive a car, and you could have time limited capacity building supports based on what the individual's goals might be.
MS EASTMAN: An investment of that kind in terms of building capacity, if someone needs capacity, but also supporting capacity at times where there may be fluctuating capacity could be a fairly significant investment in terms of what we have heard this week where the guardians or the trustees are almost becoming case managers on some of these issues, obviously at cost to the states and territories. Would you accept that?
MR McNAUGHTON: To a point. But actually what the guardians also support is the engagement of the plan to which the majority of the participants have are quite significant amounts of support coordination who helps with their day to day engagement with their plan. So, they are the ones, the support coordinators are the ones who are doing the day to day connections with the service provider, engaging with your goals, helping you find a housing decision, if that's a goal for you. It's not the guardian who is doing that work. That's the NDIS funded support coordinator who will be doing that work.
MS EASTMAN: Well, it seemed from the evidence this week to be some fuzzy lines in terms of who had to do what in that area. Would this be an area that also needs some further investigation in terms of the actual delivery of services to support people to participate?
MR McNAUGHTON: I think it sounds you know, one of the things that we have observed this week is the need to do more clarification and communications and understanding the respective roles of supporting participants to navigate the NDIS.
MS EASTMAN: And is there a mechanism within the NDIS to evaluate or measure whether where reasonable and necessary supports include this capacity building, whether they are actually working or delivering outcomes for the participants? Do you have a way of measuring that at all?
MR McNAUGHTON: Do you want to talk about
DR BENNETT: Yes, on an individual by individual basis, that would be through each plan review or where a participant is we discuss whether their goals are being attained and what the outcomes are through the period of the their last plan. On another level, we are in the process of, through implementing a new policy that we have touched upon, developing an evaluation framework for that policy which would include looking specifically at the efficacy of particular supported decision making supports that we can fund and the extent to which they lead to good outcomes and for whom and in what quantity.
MS EASTMAN: You have set out in the statement in some detail about the work done in relation to the draft supported decision making policy. When can participants and their nominees expect to see the policy in action?
DR BENNETT: We would expect to be implementing the policy progressively from early in 2023. It will go to the NDIA's board later this month for
COMMISSIONER RYAN: Which policy are we talking about? To be honest, I'm absolutely in the dark.
DR BENNETT: Apologies, Commissioner.
MS EASTMAN: Sorry, Commissioners. If you turn to paragraph 49, it's a discussion about the key principles in the supported decision making policy. So, Dr Bennett may assist you on that. But our understanding
COMMISSIONER RYAN: Sorry, I didn't need a detailed clarification. It was simply you were talking about this supported decision making policy, because the earlier part of your answer suggested there was some sort of evaluation policy as well. I was getting a bit confused as to which policy you -
MS EASTMAN: Sorry, that's my fault because I'm conscious of the time and I was trying to just jump to the final point, which was that the draft NDIS supported decision making policy is a process that's underway. There's a lot in the statement, Commissioner, that, at paragraph 49 and following, describes what that will be, and you will see at paragraph 69 we are told the NDIA expects to implement the policy in early 2023. So, my final question is when can we expect to see that. I think Dr Bennett was on that question, and then I will hand back to the Commissioners. They may have some questions.
DR BENNETT: That's correct. So, from 2023, endorsed hopefully by the NDIA's Board in November. There will be an implementation plan and the evaluation I referred to, Commissioner, is part of that implementation plan. We have made an ongoing commitment to continuing to work in co design through the implementation, and I say from early 2023 because I think this will be a multi year implementation because, in part, it involves some significant cultural change that will take time for us to see embedded.
MS EASTMAN: Has any of that work been informed by the outcomes of the Royal Commission's roundtables conducted at the end of May and early June?
DR BENNETT: Absolutely it has, Counsel. I think we were very positive about the proposals that were put forward in the Royal Commission's discussion paper for those roundtables. We would see the principles within the policy that we have developed with the disability community as very much aligned with those proposed by the Royal Commission, and we would welcome the other proposals as they relate to both a national framework and model and a governance body to oversee that.
MS EASTMAN: Thank you. Just given the time, Commissioners, those are my questions, and I will hand to you, Chair, if the Commissioners have got questions for these witnesses.
CHAIR: Yes. Thank you very much. Just on this SDM policy, before I ask my colleagues if they have any questions, I don't think we have in the tender bundle the actual draft policy that apparently exists. So, I'm not sure whether we we do have it? No, we don't. We were looking for it or some of us were this morning. So, I don't know. That's something perhaps I can just mention, and we can see whether it's possible to get the draft policy. I appreciate it may be a process where it has to be endorsed by a decision making body. I will now ask starting with Commissioner Ryan whether my colleagues have any questions.
COMMISSIONER RYAN: Okay. Look, I'm a little unclear of an answer you gave earlier when you referred us to pages your paragraphs 182 to 188, which you described, as a result of the questioning from Counsel, as it would take us through or give us information about "a range of structured supports through which the planning process that we provide to staff to help them understand the idea of or guide them through a process that would look like supported decision making.”
My quick look or my look at those that information you have got there is entirely to do with appointing a nominee. I don't see much information about how to help people make decisions at all. Can I suggest that that whole question was about whether or not the NDIS needed to define capacity or not, if not for your own clarity but for everyone else's. Can I ask you to give some further thought as to whether or not that might be addressed on notice? Because I'm not really sure that we have got an answer to that.
MR McNAUGHTON: Commissioner, just on that too, I did note that. A lot of the information we talk about how we train our front line and the types of training we do are covered off under question 11 in our statement as to how we train the front line, the resources that we provide, how we have co designed some resources with the sector.
COMMISSIONER RYAN: I get that, but this was supposed to be the answer, do we need a policy which describes what capacity means, and you said there was some information which would explain to us how that is done, I guess, by you know, guided questioning. This doesn't. So, we are without an answer to that question as to whether or not you need a defined policy. Can I take you to, look in page in your paragraphs 87 through to 90, you talk about the role of support coordinators.
And you have basically suggested that they operate in such a way that they provide people with support for supported decision making. They will, in fact, operate in that way. I don't know whether you missed the evidence or not we received from Austyn, who basically said that it was not until she changed her support coordinator, who was a person working for a particular provider, that they suddenly began to make changes because it was standard practice for that support coordinator to pretty much choose the products produced by their own service provider.
And as I understand it, it is not uncommon that a lot of people have support coordinators who work for a service provider and they, for some reason or other, only use other services they have and that that would, in fact, indicate that support coordinators are not assisting people with supported decision making and help people making decisions about their own supports but, in fact, using some other paradigm altogether.
And it's a significant area of downfall, and you said that you issued a Support Coordination Discussion Paper in 2020, which is some time ago, and it appears that that intention is being honoured more in the breach. Would you agree that there needs to be a great deal more information given to support coordinators about supported decision making in particular?
DR BENNETT: I would agree with that, Commissioner and certainly a major part of the implementation activities around the policy we have been discussing from next year will be around building capacity and capability, not just for support coordinators but for many different parties within our ecosystem that support coordinator are included because they are an important part of that. I would add as well, of course, that the government's recently stood up NDIS review has intermediaries more broadly and how they operate within the scheme quite firmly within its Terms of Reference. So, we will be awaiting direction from the review on certain aspects of how that might be further improved while continuing to make improvements in the interim.
COMMISSIONER RYAN: One thing you are doing, as described in paragraph 91, which said you had conducted twenty information sessions. What we don't have is the information as to how extensive that was. Was it across Australia? Did people pay to attend? What number of people were instructed as a result of those sessions?
MR McNAUGHTON: We can get that for you.
COMMISSIONER RYAN: Great.
MR McNAUGHTON: And it does go very much to the point around conflict of interest as well, because, as you heard and we agree, there should be a line between the support coordinator and the service provider, and I know the Commission makes that quite strongly in their Code of Conduct as well.
COMMISSIONER RYAN: Thank you, Mr Chair.
CHAIR: Commissioner McEwin.
COMMISSIONER McEWIN: Thank you, Chair. My one question for the both of you and thank you for your evidence relates to people in group homes. I wonder whether you could give me an ideal before the NDIS, what independent oversight was in place? And how that relates, then, to the work you are doing now about supported decision making? And, Dr Bennett, you mentioned consultations with people with intellectual disabilities. So, you can give me a bit more context to that? And my final point on that is, many people in group homes don't even have informal networks. So, formal and informal networks, they don't have them.
DR BENNETT: Certainly, Commissioner. I will come at it a slightly different way, but I will answer the question, Commissioner, absolutely. We are very keen to understand further, as we have said, some of the reasons for the growth that has been seen across jurisdictions in appointments of guardians. And it would seem fair from the evidence that we have seen orally or in writing that the instances where that is happening are very unlikely to be cases where individuals have a few hours of therapy supports in their plans, but much more likely in circumstances where somebody has SDA and SIL within their plan in terms of supports.
And whilst there are some contemporary versions of that across Australia, the vast majority of those services are legacy group homes that transitioned into the NDIS from previous state and territory systems. And whilst we would agree that the appointment of guardians to help those folks navigate the NDIS is not the best outcome and we would argue, as well, probably not the necessary outcome in some cases in relation to the nominee provisions and other supports for decision making that we provide I would say. And this hasn't really come to light that it's possibly not a worse outcome than the one which it replaces.
I will illustrate that with an example scenario. It's hypothetical, but I think also quite plausible. That those people might be people with an intellectual disability with very high support needs, living in a group home, previously block funded by state and territory governments, whose informal or family supports have eroded over a period of time and now have no supports at all around them. That means that they have had, until recent time, no choice over who they live with, how support is provided within their home.
They haven't had someone with a legal responsibility for their best interests, let alone their will and preferences, and both large decisions and small decisions about the day to day are not within the agency that they have had. So, I think, if you look at the growth in guardianship orders around those people, the point has been made, I think, that that is at odds with the key objectives of the NDIS. And I can certainly see how that may appear the case.
But if it is a stepping stone towards those individuals having more agency because, for the first time, perhaps, they are being recognised as individuals and the funding is for an individual, then they arguably are getting a different and better experience from the NDIS than they previously had. And if you look back, I think, at caseload numbers for public guardians in jurisdictions like Victoria over time, you are very likely to see that those have spiked at times where, historically, they have corresponded with the closure of a large institution or hospital as a result of the necessary work in helping those folks integrate within the community.
So, you could see that, to an extent, as a feature of the ongoing deinstitutionalization that is occurring under the NDIS. We would see, really, the
CHAIR: Dr Bennett, I think we are on the verge of moving into an historical excursion, so, if you don't mind, maybe a couple more answers to answer Commissioner McEwin and then we will move on.
DR BENNETT: I think my final point would be that we would certainly see the litmus test of our supported decision making policy and its implementation as being the extent to which it really changes the situation for people living in group homes, for whom their experience of choice and control has not changed to the extent that we would like to this point in time.
COMMISSIONER McEWIN: Thank you. Thank you both.
CHAIR: Yes. Thank you. To deal to refer to the question that Commissioner Ryan put to you concerning the role of support coordinators, I take it you are both familiar with evidence that we have heard at other hearings that although some support coordinators undoubtedly do an excellent job, we have heard a good deal of evidence about support coordinators who do a very poor job in some cases, apparently, not a job at all. So, that I would hope that the NDIA is giving consideration to that evidence as well in determining what the role that support coordinators should be and how they might be regulated or supervised. That's more of a comment than a question.
When we come to the issue of capacity, it does seem that it might be quite a difficult task for the NDIA to determine on a case by case basis whether capacity exists in the relevant sense. The reason I say that is if you start with section 17A of the Act, you have what, on one view, is an implicit definition that the relevant test is whether someone is able to determine their own interests to make decisions that affect their own lives on the assumption that they have support, although the nature of support is not entirely made clear by the section.
Then when you go to the nominee rules that Ms Eastman took you to, clause 3.3, there is an obvious anomaly then in that the first sentence says:
"Appointments of nominees will be justified only when it's not possible for participants to be assisted to make decisions for themselves."
That, it would seem, is plainly not intended to apply to appointments at the request of the participant, because that is dealt with in paragraph 3.12 clause 3.12 and clause 3.13 where the key principle is that a nominee should ordinarily be appointed if the participants requests one. So, that's a standard that pretty clearly is not consistent with the first sentence of clause 3.3.
Then you have the second sentence of clause 3.3:
"Appointments of nominees usually come about as a result of the participant requesting...”
And that takes us back to the clause that I just mentioned. But when you then go to clause 3.14, which deals with appointment without a request from the participant, we have yet more criteria:
"The CEO is to have regard to whether the participant would be able to participate effectively in the NDIS without having a nominee appointed.”
Whatever that means. And then you go to clause 3.15, which I won't read, but appears to be entirely circular. So, what I'm suggesting is that although I'm usually quite reluctant to criticise drafting of documents because I know how hard it is, this really does seem to be a set of rules that needs reconsideration.
Even independently of whether there's a all embracing definition of capacity, I find it very difficult to see how anybody can apply these principles with any degree of consistency. So, perhaps that's something that you might take as a comment and see whether it's worthwhile having another look at both the rules at the rules and their connection with section 17A. If you want to comment on that now, please do.
MR McNAUGHTON: I think, Chair, what we would agree with some of the observations. Certainly our role is to provide guidance to our staff to be able to implement the rules as they are currently drafted. The rules themselves are decisions of governments to review, as we all know. I'm sure that, as Dr Bennett said, the NDIS review may consider ways to simplify things, not only the role of intermediaries but aspects such as nominees could be part of their consideration as well. But certainly today our role is to try and make it as practical for our staff and partners to implement the rules as they currently stand, noting your observations, which I think are reasonable.
CHAIR: You are not suggesting that the NDIA doesn't play any part in drafting rules, are you?
MR McNAUGHTON: Our role is to help inform government and the Department if we think there are opportunities to improve. That's right. That is our role, Chair. You are right.
CHAIR: Yes. Alright. Well, thank you both for, again, the written statement that you've provided in response to the questions that the Royal Commission put to you. And thank you for the evidence this morning and this afternoon. We appreciate the information you have provided and your willingness to consider the suggestions that have been made, either explicitly or implicitly. So, thank you very much.
MR McNAUGHTON: Thank you, Chair.
DR BENNETT: Thank you, chair.
MS EASTMAN: Chair, that concludes the evidence for this proceeding. If Dr Bennett and Mr McNaughton want to leave the table, that's fine. I've just got some administrative matters to deal with.
<THE WITNESSES WITHDREW
MS EASTMAN: Can I deal with the tender of the material for the NDIA and ask you to receive into evidence the joint statement, the corrigendum and accompanying material, and that should be marked Exhibit 30.191 through to 30.200.
CHAIR: Yes, the joint statement and the accompanying documents will be admitted into evidence with the markings Ms Eastman has indicated. Yes.
<EXHIBITS 30.191 TO 30.200 JOINT STATEMENT OF SCOTT McNAUGHTON AND SAM BENNETT DATED 07/05/2021, CORRIGENDUM DATED 23/11/22 AND ACCOMPANYING MATERIAL
MS EASTMAN: So, there's a few additional tenders arising during the course of the week. First of all, the notes that the participants from the Council for Intellectual Disability spoke to have been provided to the Royal Commission, and we will tender those notes into evidence. If you can mark that Exhibit 30.175.
CHAIR: Yes. That can be done. So, those notes will become Exhibit 30.175.
<EXHIBIT 30.175 NOTES FROM PARTICIPANTS FROM COUNCIL FOR INTELLECTUAL DISABILITY
MS EASTMAN: There is one matter arising from the evidence on Monday in relation to Anthony and Killara. If we can tender into evidence the complaint lodged by Anthony and if we can mark that document Exhibit 30.301.
CHAIR: Yes, the complaint made by or on behalf of Anthony and Killara will be Exhibit 30.031.
<EXHIBIT 30.031 COMPLAINT MADE BY OR ON BEHALF OF ANTHONY AND KILLARA
MS EASTMAN: And, Chair, we had hoped to lead some evidence from witnesses with lived and direct experience in Tasmania. We were unable to do that, but we were assisted with some evidence provided by the Acting Public Guardian in Tasmania and the CEO of the Public Trustee in Tasmania. And I will tender into evidence that material, if it could be marked Exhibit 30.201 through to 30.207.
CHAIR: Yes, the documents from Tasmania to which Ms Eastman has referred will be admitted into evidence and given the markings she has indicated.
<EXHIBITS 30.201 TO 30.207 DOCUMENTS PROVIDED BY ACTING PUBLIC GUARDIAN IN TASMANIA AND CEO OF THE PUBLIC TRUSTEE IN TASMANIA
MS EASTMAN: And then, Chair, that concludes the tenders. We have circulated some proposed directions in relation to responding to questions on notice, the provision of Counsel Assisting's submissions and responses. I understand they are agreed, other than our learned friends from the Commonwealth would like order 1 and 2 to be changed from 9 December to 16 December.
I have great sympathy and understanding as to why our learned friends would like the change of date, but we too have commitments in relation to the next Public hearing and so we would like to retain 9 December. We think that should be sufficient time to answer the questions on notice. If the date was changed to 16 December, that causes some difficulty internally for us in the Royal Commission. I don't know if my learned friend wants to be heard on that. But
MR HODGE: The request is not pressed so 9 December is fine.
MS EASTMAN: Thank you. Other than that, I think now the dates are agreed.
CHAIR: In that case, I make a ruling that 9 December is the relevant date. Alright. I shall read out the directions which are agreed.
1. By 9 December 2022, witnesses who took questions on notice during Public hearing 30 are to provide their answers in writing to the Office of Solicitor Assisting the Royal Commissioner, OSA. The answers should be targeted and concise and not address additional or unnecessary matters.
2. By 9 December 2022, parties with leave to appear who seek to tender further documents into evidence are to provide those documents to the OSA for consideration by Counsel Assisting the Royal Commission.
3. By 20 January 2023, Counsel Assisting the Royal Commission will tender any additional documents into evidence in Public hearing 30 that she considers appropriate.
4. Counsel Assisting the Royal Commission will prepare written submissions following the hearing. By 20 January 2023, these submissions will be provided on a confidential basis to parties with leave to appear and may be provided on the same basis to any witness or recipient of a procedural fairness letter from the OSA in preparation for Public hearing 30.
5. By 17 February 2023, parties with leave to appear in Public hearing 30 who wish to make submissions in response to Counsel Assisting's written submissions are to provide those submissions to the OSA. Any such written submissions should be concise and should not include any additional evidence.
They then are the directions that are made.
MS EASTMAN: Thank you, Chair. I think that concludes this Public hearing, and on behalf of Counsel Assisting and OSA, we thank all of the participants and their representatives for participating this hearing. And I would also like to extend our appreciation to members of the gallery who have come every day to watch and observe the proceeding. We are grateful for your attendance. Thank you.
CHAIR: Yes. Thank you. I would like, on behalf of the Commissioners, to express our appreciation to all those who have been responsible for preparing this hearing and conducting the hearing. As I have noted on many previous occasions, the preparation for these hearings is an extraordinarily complicated and difficult task that requires as a great deal of skill, time and resources. That is indicated by the fact that we have had evidence from people in the Torres Strait, from people on King Island, or from a person on King Island and someone a witness from Kangaroo Island.
They don't sound as though they are necessarily hardship post, but it does involve a great deal of travel, a great deal of time and, of course, the provision of appropriate supports to people with lived experience so that they can give their evidence comfortably and without the risk of retraumatisation.
There are many people, both within the Royal Commission and outside, who contribute to the preparation for and conduct of the hearing, and the Commissioners are grateful to each and every one of them for the work that has enabled this hearing to take place so smoothly and to cover such an enormous number of matters.
I would like to express our thanks also, particularly to the witnesses with lived experience who gave evidence. I'm referring to Killara, a First Nations woman from Western Australia who has been and continues to be subject to guardianship orders, and her son Anthony who gave evidence about Killara's experiences under guardianship and his experiences trying to support his mother to get the health and accommodation services she requires and to be supported in her decision making.
Boyzie Namok, who gave evidence alongside his family about the Queensland guardianship and administration system and how he is supported by his family to make and communicate decisions, and the family included Mama Bakoi Namok, Bernard Namok Jr and Kernisha Namok, and we, of course, had heard from that family at a previous hearing and were pleased to have them back again at this hearing.
Ms Julie Bury gave evidence about her experiences challenging administration orders concerning her and in her dealings with the Queensland Public Trustee. Mr Uli Cartwright gave evidence about his experiences being subject to and challenging administration orders and dealing with the Victorian State Trustee. Mr John O'Donnell gave evidence about being subjected to guardianship and administration orders and explained how this had affected his ability to fulfil his goals.
Ms Suzanne Nunn gave evidence about her experiences dealing with the Queensland Trustee and explained the experiences also of her brothers Terry and John. Austyn gave evidence about her brother Howie and their experiences with the guardianship system in New South Wales. And, of course, we heard from the Council for Intellectual Disability - Mr Ricky Kremer, Mr Alexander Elliott and Ms Justine O'Neill - who made their presentation of matters that they presented themselves thereby giving Senior Counsel a short rest from her labours.
We heard from a number of advocates: Ms Alice Barter, a solicitor from the Aboriginal Legal Service of Western Australia; Ms Christine Grace from Kin Advocacy; Ms Matilda Alexander and Mr Dayne Kingsford from the Queensland Advocacy for Inclusion; Ms Naomi Anderson, Principal Solicitor Villamanta Disability Rights Service; and, of course, just now, a very short time ago, from Mr Craig Gear, the CEO of the Old Persons Advocacy Network.
In addition we heard from a number of government witness, each of whom provided very detailed material in response to notices to give information that were issued by the Royal Commission. We are grateful to each of them for the information provided in that form and for the oral evidence they have given during the course of this week.
So, thank you to all of those people who have contributed to the work of the Royal Commission, and particularly the people with lived experience of disability who gave us the privilege of hearing of their experiences.
The Royal Commission's next hearing is the final hearing for 2022. It's the thirty-first Public hearing of the Royal Commission. It's entitled Vision for an Inclusive Education - for an Inclusive Australia, apparently. Yes, Inclusive Australia. Sorry. And that will take place in the Royal Commission's Brisbane hearing room from 12 to 16 December 2022. Public hearing 31 will explore what should be done to create a more inclusive society that supports people with disability to live independently and free from violence, abuse, neglect and exploitation. It will also examine, among other things, the progress of the Australian Disability Strategy and how it is being implemented and hear evidence from people with disability about what inclusion means to them and their vision for an inclusive Australia.
So, thank you again to everybody. The Royal Commission this concludes the hearing this week and we shall resume on 12 December in the Brisbane hearing room.
<ADJOURNED AT 1:12 PM UNTIL MONDAY, 12 DECEMBER 2022