This session was part of the NDIS and Advocacy conference held in Geelong on December. John Chesterman, Manager of Policy and Education, Office of the Public Advocate (OPA), presented an overview of the issues relating to guardianship, administration and supported decision making within the NDIS framework.
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Transcript
DEIDRE GRIFFITHS:
I’d like to welcome John Chesterman, who is going to speak to us about issues relating to guardianship, administration and supported decision-making within the NDIS framework. John Chesterman, as lots of you probably know, is from the Office of the Public Advocate. I’ll just hand over to John. Thank you.
JOHN CHESTERMAN:
Thanks, Deidre. Thank you for having me. I’d like to begin by acknowledging the traditional owners of the country on which we meet, the Wathaurong and Woderong people, and I pay my respects to elders past and present. I thank the Robyn’s for organising today, as in Robyn Gale and Mills, and I know there are others involved but they are the two Robyn’s that got me involved. Thank you for the invitation.
It’s nice to be among some very familiar faces, but I would say that I haven’t had much interaction in my time at the Office of the Public Advocate with the Deaf-Blind community and I do just want to say how good it is to be having that interaction, and it’s ironic that we’ve had one session already convened by Michelle and Heather, who was up the front here yesterday, gave a presentation at which I was present, so it’s nice to be having that interaction.
I’ll be taking you through this topic of supported and substituted decision-making and the NDIS. To begin with, I just want to give you a quick overview of the Office of the Public Advocate and what it is that we do.
We are the Victorian Guardian of last resort for adults with decision-making incapacity. We exercise that role for around one and a half thousand people each year. We conduct investigations for our Civil and Administrative Tribunal, VCAT, in Victoria. We co-ordinate five volunteer programs. We have around 400 community visitors who visit a range of disability accommodation settings. We have around 200 independent third persons, getting up to 300 independent third persons who sit in on police interviews, where police are interviewing a person with an apparent cognitive impairment. We have round 70 community guardians.
We have a very small and new supported decision-making program with 17 participants and 17 decision-making supporters. We also have a small program called Corrections Independent Support Officers. We also conduct advocacy and have an advice service, which I’d encourage you to call if you have any questions about anything I say, but also about the disability sector in general, and if we can’t answer it we can refer you. And we deliver community education.
What I want to do is talk to you with some introductory comments about OPA’s NDIS related work. We have community visitors here in the Barwon region who visit people in disability accommodation who are participants in the scheme. We’ve acted as advocates for 28 participants in shared supported accommodation down here. And for 31 participants at Kilandra the only residential institution here in the Barwon pilot site and we have been guardian for nine NDIS participants.
We’ve released a discussion paper on guardianship and the NDIS which was written by Tess, who chaired the last session. And we’re conducting an evaluation of our advocacy. We’ve also had several meetings with the NDIA down here in Geelong, and it was good to hear David’s presentation earlier and to meet David, and I’ll be following up with some further points of interest which will become clear as I give this presentation.
We know that the NDIS has been launched in every state and territory with the exception of Queensland. There are launch sites throughout the country, and in terms of the roll-out of the NDIS, we know in Victoria that begins in the middle of 2016 and the state will be covered by the middle of 2019, and the timelines are broadly similar in other jurisdictions in Australia. David was reluctant to give these figures — David was here a a minute ago so he won’t blanch when I actually show you these figures, and I’m happy for these figures to be made available to people here.
They’re publicly available. This was at the end of the first year. There were eight and a half thousand eligible participants Australia-wide in the NDIS. That’s now over 10,000 people. There are over 7,000 approved plans. That’s now around 9,000 plans approved. The average annualised package cost is around 35,000. The distribution shows there’s a small number of people with very high costs, with over $100,000 a year, and just to bear that out, in New South Wales and Victoria around 65 percent of participants account for about 18 percent of the cost. The point is there are only a very small number of people with very high costs of over $100,000 a year.
I’m now showing a table that refers to the primary disability of participants in the NDIS as at the end of the first year, at the start of July this year, and the point I want to make here is that the various primary disabilities of participants aren’t broken down into those who have decision-making disabilities, and some people in each of the categories I’ve highlighted, so in relation to autism, developmental delay, global developmental delay, intellectual disability and other intellectual disabilities, some people in those categories will not need any assistance to make decisions and some people may need assistance to make decisions.
The point I would make is that if we look in total at NDIS participants, over 60 percent of people are in the groups I’ve just outlined, and so whilst we don’t know exactly how many participants will need support with making decisions, we know that it is a relatively high number. It’s a significant number of NDIS participants.
In terms of what gets funded, the Productivity Commission predicted around half of the participants involved would need assistance with daily care needs, communication and/or mobility, and that’s been borne out when we find out that after the first year what was being funded by the NDIS was — and these categories aren’t mutually exclusive, but of the seven-odd thousand plans that have been approved, 5,000 people got assistance with communication, one and a half thousand with domestic life, 2,259 with mobility and over 4,000 with self-care. So in other words, the Productivity Commission’s predictions have largely been borne out.
What I’m really wanting to address today is some key NDIS questions, because the people that I’m particularly interested in talking about today are people with significant cognitive impairment and/or significant mental ill health. So we know the NDIS is based on a market purchaser model, and the Productivity Commission talked about an individual choice model in which people with a disability could choose how much control they’re wanting to exercise. So some key NDIS questions that I really want to flag with people are these Ones:
- How is the consumer choice philosophy working for people with significant cognitive impairments or mental ill health?
- Who is making the decisions? Is it the person concerned, and is sufficient support being given to them to do that?
- Is it an informal decision-maker, and I know carers, especially family carers, don’t like that terminology of informal decision-maker, but you’ll understand in a minute why I’m using that term. So is it informal decision-makers, a parent for instance, partner? Or is it a substitute decision-maker, somebody making a decision for that person?
I’ve put up those terms, guardian and nominee, which I’ll come back to in a minute and explain what I mean.
The second key question is, NDIS participation gives rise to new choices. Of course that’s one of the fundamental philosophies behind the scheme, that people will have increased choice. So to what extent are substitute decision-makers being appointed because of these new choices?
Another question: when should a substitute decision-maker be appointed for an NDIS participant? That’s not an easy question to answer, and there are tensions going either way that I’ll come to as I address this topic. The response of the Office of the Public Advocate to that question I’ve just posed, when should a substitute decision-maker be appointed, we would say this: when participation in the NDIS presents a choice about a significant matter that the person is unable with support to make themselves and where there’s no less restrictive alternative to the appointment.
I’ll give you one example of that. A participant with a significant cognitive impairment without family or other informal supporters has the opportunity to move to new accommodation and does not have the ability to make the decision about whether to move, given all the support that might be available. In that situation we would say it is better to have a substitute decision-maker than not, because what might happen is that no decision might be made and the persons’ quality of life may suffer.
But I would reiterate, and I’ll make this clear as I go through, we are talking about a very small percentage of people. We don’t think substituted decision-making by any means should be the norm for NDIS participation. The reason for that is that supported decision-making, people in this audience don’t need to be told, is probably the most important human rights concept of the last few years,certainly for people with significant cognitive impairments or mental ill health. It has its basis in a United Nations Convention, The Convention on the Rights of Persons with Disabilities.
A perhaps ironic point is that supported decision-making isn’t actually mentioned in the Convention, yet most people who are experts in the Convention would say it is the key theme to the Convention. So one of those key themes is that state-directed substitute decision-making should be minimised and supported decision-making should be preferred. I’ll come to explain what I mean there.
So what is supported decision-making? It’s a term used to refer to a range of practices whereby people with disability are assisted to make or implement their own decisions, and I’ll quote here from one of the United Nations websites: “The Convention on the Rights of Persons with Disability recognises that some persons with disabilities require assistance to exercise legal capacity, so states”— like Australia, which has signed and ratified the Convention — “must do what they can to support those individuals and introduce safeguards against abuse of that support. Support could take the form of one trusted person or a network of people. It might be necessary occasionally or all the time. Supported decision-making can take many forms.”
The point I want to make here is that supported decision-making is an ever more common feature of legislative developments. I’ll give you some examples from here in Victoria. The Victorian Law Reform Commission completed a big guardianship report in 2012. We heard Ian Parsons on a panel earlier today. He was one of the workers there, and Tess McCarthy, now at OPA, was also at the Commission and helped put together the guardianship final report. That makes several supported decision-making recommendations and suggested that OPA host a supported decision-making volunteer program.
I’m happy to say that recommendation’s been put into practice. We’re already doing it. In terms of the 440 recommendations including some very key ones on supported decision-making, there is one new law in Victoria that adopts some of those recommendations, but we’re still waiting and we’ll see what happens with the new government around most of those recommendations, which we would fully support.
But in terms of supported decision-making, if not waiting for guardianship reform. We’ve got relatively new mental health legislation in Victoria that came into play in the middle of last year. That refers to supported decision-making, talks about people being supported to make and participate in their own decisions.
We’ve now got new enduring powers of attorney legislation in Victoria very recently, and that creates a new supported decision-making entity called a supportive attorney. I’m happy during questions to discuss that role, I won’t go through it now. Suffice to say that supported decision-making is getting greater legislative articulation as we go through time and that’s likely only to increase in the future.
There was an attempt just before the election to pass new guardianship legislation that did contain one supported decision-making initiative, which would have been good. It was only one initiative, but that wasn’t passed prior to the Victorian election so we’ll have to wait and see if it comes back with the new Andrews government in Victoria.
You heard David talk about the Australian Law Reform Commission recently releasing a report. It was finished in August but only publicly released in the last week and a half, and that’s called Equality, Capacity and Disability in Commonwealth Laws. The short story I want to give you around that report is that it recommends a range of ways in which supported decision-making should be a key feature of law reform both at the Commonwealth level and at state level.
So at state level that affects things like guardianship legislation. At Commonwealth level, there are two key pieces of Commonwealth legislation that are involved: the Aged Care Act and I don’t need to tell you the other one, which is the NDIS Act. So those are the two key areas – I’m showing a slide which I won’t read through because I don’t need to go through this level of detail, but if people are interested I will make these slides available, and I do encourage advocates to look at this Australian Law Reform Commission report, because it can be a very good advocacy tool around supported decision-making.
In terms of legislative support for supported decision-making, whilst the Australian Law Reform Commission recommends a number of changes including to the National Disability Insurance Scheme Act, the Act as it currently exists for the NDIS does make reference to supported decision-making. If you look in the early sections, Section Four talks about “People with disability should be supported to participate in and contribute to social and economic life to the extent of their ability. People with disability should be supported to exercise choice.” And in the following section: “People with disability should be involved in decision-making processes that affect them, and where possible make decisions for themselves.”
So again I urge the advocates in the room, and I’m sure you’re already doing this, to make use of those sections when explaining your role. So I’ve talked about supported decision-making. I now want to talk about substitute decision-making, which is where somebody steps in the shoes of a person and makes the decisions for a person.
When does substitute decision-making exist? I’ll give you some examples. The three most common examples are involuntary mental health treatment, where someone is deciding, an authorised psychiatrist, is deciding on mental health treatment despite what the person themselves wants. Another example is guardianship, and this is where we’re involved as the guardian of last resort for adults with decision-making disability. So guardianship is an example, and administration.
So guardianship, where we make, for instance, an accommodation decision, or administration, where an administrator, such as the State Trustees or a private administrator, makes decisions about money. That’s another example of substitute decision-making. Another example is where enduring powers of attorney are activated. So I’ve created an enduring power of attorney, I appoint Peter as my attorney, I’m not able to make my decisions any longer because I suffer a catastrophic injury, Peter then makes my decisions for me. So even though I’ve appointed Peter, it’s still an example of substitute decision-making.
Looking at guardianship in particular – some people won’t know but many do, but just if you don’t know, there are three criteria for the appointment of a guardian. This applies to administration also. If a person has a disability, is unable because of that disability to make reasonable judgements and is in need of a guardian. They’re the criteria. We think they should be tightened up and be made more human rights compliant. I won’t go through that argument now, but those are the current criteria. In terms of how guardians are appointed, there’s a process where an application is made to VCAT for no cost. VCAT considers the application and can appoint a guardian and/or an administrator.
I’m wanting to talk to you now about substitute decision-making at the federal level, because this is where it gets complex. The National Disability Insurance Scheme Act has its own substitute decision-makers called nominees, and there are two types of nominees, plan nominees and correspondence nominees, and I hasten to add that there isn’t high usage being made of nominees, I know that, but I’m wanting to talk about this because we think this is a bit of a problem.
We need to work through how substitute decision-making should work with the NDIS because we’ve got these competing systems of federal nominees and state guardians and administrators. So the power to appoint a nominee rests with the Chief Executive Officer of the launch agency, and they have to take into account a person’s wishes. This is one area we think should be tightened up to make sure that the preferences of an individual should be paramount if a substitute decision-maker is appointed.
My slide contains some extracts from the relevant rules that exist around nominee appointment. I won’t read through those. The main point I want to get across here is that nominees can be appointed to act on behalf of a person, and if a nominee is appointed then that nominee can have quite significant power to make decisions, and isn’t subject to the same sorts of regulation that guardians and administrators are.
If we’re appointed guardian, we have to be appointed by a Tribunal. A nominee can simply be appointed by the CEO of the launch agency, and we think that should be more open to review, and it’s interesting to note that nominees aren’t being highly utilised at the moment. So the key question that I wanted to just throw out there and which we’re raising with the National Disability Insurance Agency both at state level and also federally is how do these different substitute decision-makers work together and how should they work together?
At the moment, all the NDIS Act says is that if a nominee is being appointed and there is a state-based guardian, then that should be taken into account in appointing the nominee. So clearly it would be thought that you should appoint that person as the nominee, although it’s not clear.
We’re also interested in the situation though where there isn’t a state-based appointment, and suddenly it appears to the agency because a person becomes a participant that they need a substitute decision-maker, what should the agency do? Should it appoint a nominee? Should it seek to have a state-based guardian or administrator appointed? What should they do? It’s not clear, and the agency isn’t sure and we’re not sure and the legislation isn’t clear.
So this is one area that we are working through, and indeed at the moment we’re working with the agency here in Victoria to create a flow-chart which would guide us as to when a substitute decision-maker might be necessary and if so, who that substitute decision-maker should be. I do reiterate one of the key messages I want to get across is that substitute decision-making should be very much a last resort. It shouldn’t be routine and every effort should be made to provide support to an individual to make their own decision, because it’s giving that support which would make us, and does make us, compliant with the key human rights instruments that exist in this area.
In terms of future developments, there’s safeguards work being undertaken. David mentioned this earlier. We’re expecting any day now a discussion paper to come from the Council of Australian Governments concerning nationally consistent safeguarding mechanisms. This is because at the moment with the launch sites it’s the state safeguards that apply, so in Victoria it’s Office of the Public Advocate Community Visitors, it’s the Senior Practitioner, it’s the Disability Services Commissioner. These are all state bodies.
But when we roll the full NDIS out, there need to be nationally consistent monitoring mechanisms. What are these going to be? Victoria happens to be better served by safeguards than other jurisdictions at the moment. Whilst ours aren’t perfect by any means, we certainly don’t want to see ours diminish, so what’s going to happen here? We’re waiting for a discussion paper any day now that will engage this issue, and my understanding is that feedback will be taken on that paper early into the new year, until around March, but we’ll have to wait and see about that.
There’ll be then a decision by the Council of Australian Governments as to what the safeguards should be, so in terms of systemic advocacy the New Year is a good time for us all to be active on this topic, because we’re talking about the full rollout of the NDIS and safeguards need to be there.
We’ve nominated five key elements that we think should be there in safeguards. The first one is one of the key themes I’m talking about today: individuals have to be supported to make their own decisions. One key theme. Guardianships shouldn’t routinely be used, nor should nominees.
Second key point: advocacy support needs to be there, and this, as people in the room know, can be crucial for good NDIS outcomes.
We need a clear complaints mechanism at a national level. It makes sense. So something like – we’ve heard today a bit about the – and I know we’re not using the internal-external terminology, but where you’re criticising or wanting to criticise an NDIA decision, then you go through a certain process. You go to the NDIA itself first and then ultimately to the Administrative Appeals Tribunal. That’s fine in relation to an NDIA decision, but what about a poor practice by a disability service provider? Who do you complain to there?
At the moment you can complain in Victoria to the Disability Services Commissioner. There needs to be a national equivalent, we think, for the whole scheme, and it is possible that could be housed with the Federal Ombudsman, possibly, but we have to wait and see. So those with an interest in this, I encourage you to look out for the consultation paper that should be with us shortly.
A fourth thing that we’re pushing for is on-site monitoring, which is done by our volunteer community visitors. The Productivity Commission said OPA’s on-site community visitors in Victoria should be modelled throughout the country, because we use volunteers and because we provide an annual report to Parliament. That’s what the Productivity Commission liked, so we’ll be continuing to push for that at a national level.
And lastly there needs to be agencies empowered to investigate situations of concern, not just where people are receiving disability services, but where people aren’t receiving disability services but maybe would benefit from those. Here in Victoria we agree with a recommendation put by our Law Reform Commission that our office should have broader powers to investigate situations of concern. So that’s another thing we’re pushing for at the national level.
So in terms of some future things that are on the agenda. There’s possible future state guardianship reform. That’s one thing that might happen in Victoria. Those people who watched or know about the Four Corners-Fairfax investigation on abuse in disability services would know that there’s going to be a parliamentary enquiry into violence against people with disability.
The outgoing government in Victoria was going to restrict that to accommodation settings. The Andrews government talked about a broader review. It’ll be a parliamentary enquiry but it’ll be broader into other services than just accommodation services, so again, people with something to say on this topic, please watch what happens when this parliamentary enquiry is set up. It’s likely to be the Family and Community Services Committee, I understand, but that’s a Victorian parliamentary enquiry that will be open to submissions, so I’m sure there are lots of people in the room who would have something valuable to say.
There’s possible federal reform concerning supported and substitute decision-making following the Australian Law Reform Commission report that’s just been made publicly available. Also the NDIS and housing is a very important topic which we’ve not really talked about much today, and I won’t do that now because I’m just finishing up, but we are expecting a paper on this topic to be released soon. There are fact sheets on the NDIA website around this, but a paper is in preparation by the NDIA and I’m expecting that to be released, I heard by the end of the year. Don’t quote me on that, it might be more delayed, but if anyone knows any more, please tell us.
So to conclude, what I’m saying today is the NDIS gives rise to new choices. People with significant cognitive impairments and mental illnesses should be supported wherever possible to make those choices themselves. Substitute decision-making laws do exist at state and federal level with guardians and nominees, and we need to work out how these laws do and should operate together in practice, and as I said, I think some changes are needed, and those changes will be integral to the development of nationally consistent safeguards.
Thank you.
DEIDRE GRIFFITHS:
Thanks very much, John. Could we have just two questions because apparently the other group have just finished.
QUESTION:
What are the criteria again for a person to be eligible for substituted decision-making? What are the criteria again?
JOHN CHESTERMAN:
For a guardian or administrator? It’s a person has a disability, isn’t able because of that disability to make reasonable judgements…
QUESTIONER:
What does reasonable judgement mean?
JOHN CHESTERMAN:
Indeed, that’s a good question, Peter, and indeed that’s something that the Tribunal member has to make their own mind up about.
We think the criteria should be changed in relation to a specific decision that needs to be made. So what we think it should say, for instance, if a person needs to move accommodation, needs to move to a new house, should there be a substitute decision-maker?
Well, only if the person is unable to make that decision about whether to move house, and in working that out we would say we should do what happens in other jurisdictions throughout the world where you have four tests about whether a person can make that decision. Do they understand what the decision is? Can they weigh up competing ideas about it? Can they retain information about that decision, and can they express their preference in some manner? It doesn’t have to be in words, but can they express a preference?
And that’s what is internationally accepted now and we think we should move down that path.
DEIDRE GRIFFITHS:
And last question from Deb Verdon.
QUESTION:
Yeah, Debbie Virden from Grampians Disability Advocacy. Thanks, John. The concept of choice and control is at the centre of the NDIS, and I think that it’s problematic if, say, an appointed guardian is routinely viewed as the substitute decision-maker, or the supported decision-maker, even, for NDIS purposes, because we support people at guardianship tribunals and our clients often don’t agree that they should have a guardian and they certainly don’t choose that particular guardian from OPA. So if in the NDIS the propensity will be to just go with the guardian appointed by VCAT, then our client will be having their choice overridden twice.
JOHN CHESTERMAN:
That’s a really good point, and not wanting to disparage my colleagues, no-one ever chooses us as guardian. We’re appointed because there’s no-one else, or because possible guardians within a family for instance can’t work together, so we’re always the last resort.
But that’s a really good point, and we’ve been very concerned at the start of the NDIS that we might be being appointed routinely just because there are these new decisions to be made. That hasn’t happened here in Victoria, and indeed I’m meeting with the head of our list tomorrow morning to talk a bit about what’s happening here and about developments so far.
In New South Wales, there have been a number of applications for guardianship just around the NDIS. This goes back a few months, but there had been 120 applications to the equivalent of VCAT in New South Wales around guardianship and that’s of concern, but certainly we think the key to avoiding guardianship is providing support for a person to be able to make their own decisions, and that’s where the emphasis should be, rather than on someone standing in the person’s shoes.
DEIDRE GRIFFITHS:
Everything will be available through the DARU site, so you don’t have to worry about that. So if you’d all like to put your hands together and thank him for a very interesting presentation.
(applause)
About John Chesterman
Dr John Chesterman is Manager of Policy and Education at the Office of the Public Advocate (OPA). He is a trained lawyer and he leads OPA’s systemic reform activities. Before joining OPA John lectured in politics at the University of Melbourne and has previously worked at James Cook University’s School of Indigenous Australian Studies in Townsville. He has written a number of books, including (as co-author) The Politics of Human Rights in Australia (Cambridge University Press). In 2013 John travelled as a Churchill Fellow to the US, Canada and the UK, where he examined a variety of adult protection systems.
- Author:
- Barwon Disability Advocacy Network (BDAN)
- Source:
- NDIS and Advocacy conference
- Date published:
- Thu 4th Dec, 2014