Public hearing 4: Health, Sydney - Day 3
Video transcript
COMMISSIONER SACKVILLE: Good morning, everybody. Before we proceed further today, we again wish to acknowledge and pay our respects to the traditional custodians of the land upon which we are meeting today, the Wann-gal people. We also pay our respects to First Nations elders, past, present and emerging, as well as to First Nations People present here today. Yes, Ms Eastman.
MS EASTMAN: Good morning, Commissioners. And good morning to those attending the hearing this morning and also watching. The hearing this morning will move to taking evidence from some of the experts in the field. So we will hear first from Professor Stephen Leeder. And his evidence will be a fairly brief and high level overview of the Australian health system. He will then be followed by Professor Julian Trollor. And that will be lengthy evidence. Professor Trollor’s provided a very extensive statement dealing with a wide range of issues that the Royal Commission will explore with him this morning.
And then this afternoon Dr Jacqueline Small will be giving evidence. She’s a paediatrician and also with particular expertise in this area. So that is the plan for today. All being well, we will make it to 4 pm, but, as with most days, there may be some need for some flexibility in the timetable, if the Commission pleases. I will hand over to Ms Wright, who’s taking Professor Leeder’s evidence.
COMMISSIONER SACKVILLE: If Professor Leeder would perhaps move into that chair, that would be helpful. Thank you very much. Good morning to you. Please sit down.
<STEPHEN ROSS LEEDER, SWORN [10.02 am]
<EXAMINATION BY MS WRIGHT
COMMISSIONER SACKVILLE: Thank you, Professor Leeder. Please sit down. Ms Wright will ask you some questions.
PROF LEEDER: Thank you.
MS WRIGHT: Professor Leeder, could you start by stating your full name, please.
PROF LEEDER: Stephen Ross Leeder.
MS WRIGHT: Are you an Emeritus Professor of Public Health and Community Medicine at the University of Sydney?
PROF LEEDER: I am.
MS WRIGHT: Many people in the room may be familiar with your background, but if I could just ask you briefly about it. What is your area of clinical expertise?
PROF LEEDER: My area of clinical expertise is respiratory medicine, but also a strange discipline called clinical epidemiology, which is the application of methods from public health to clinical practice.
MS WRIGHT: And you’ve been in practice for a number of – many years. Are you currently based at Westmead Hospital?
PROF LEEDER: I am.
MS WRIGHT: And since 1975 have you served in many academic and advisory roles in health policy, health care, prevention, public health, medical journalism and, of course, your area of expertise – clinical expertise, as well?
PROF LEEDER: Yes.
MS WRIGHT: And were you the Dean of the University of Sydney Medical School between 1996 and 2003?
PROF LEEDER: Yes, I was.
MS WRIGHT: Are you speaking to the Commission today in your capacity as Emeritus Professor of Public Health?
PROF LEEDER: I am.
MS WRIGHT: You’ve provided the Commission with a statement dated 12 February 2020.
PROF LEEDER: I did.
MS WRIGHT: Commissioners, that’s at tab 3 of tender bundle D. And Professor Leeder’s CV is at tab 4. Have you set out in your statement an overview of Australia’s health care system?
PROF LEEDER: I have.
MS WRIGHT: I just want to ask you first about the structure of the healthcare system in Australia. We have multiple levels of care in the health system, primary, secondary and tertiary. Can you briefly explain, for the benefit of those listening, what they are and how they operate?.
PROF LEEDER: Yes. Base it around patient or client journey, if you will. When someone presents with a problem, they frequently will access what we call primary care or first level care in the form of a general practitioner, who may make assessments and treatment or may determine that the individual needs more sophisticated and specialised care and refer them on to a specialist. If they need admission to hospital, it may be that they are sent to a district hospital, if it’s a relatively low-level problem, or, if it’s serious, to one of the so-called tertiary hospitals, teaching hospitals, where there are high levels of technology and specialisation. So it’s a graded system. And, by far, the most common use of the system occurs through primary care.
MS WRIGHT: Okay. And primary care – as you’ve said, it’s often the first point of contact for a person using the health system?
PROF LEEDER: Quite frequently, yes.
MS WRIGHT: Yes. Includes – health professionals who deliver it, includes GPs, nurses, allied health professionals, even dentists – are they included in primary health care?
PROF LEEDER: Yes, indeed. And if you have a toothache and go to your local dentist, then that’s primary dental care.
MS WRIGHT: You’ve referred in your statement to Primary Health Networks. They’re a relatively new development in the health system. Could I ask you to describe what they are, briefly, what their purpose is and what they do?.
PROF LEEDER: Primary Health Networks, of which there are 30 or so, I think, in operation in Australia now, have been developed by the Commonwealth Government to bring general practitioners together in functional relationship, because one of the challenges of primary care or general practice is that there are a lot of individuals, but only recently relatively organised into groups. And so the Commonwealth has taken the view that there may well be initiatives, such as in the field of mental health, that are better served by addressing general practitioners as functional groups. So Primary Health Networks are supported by the Federal Government and have an interaction with state-based health services. But, fundamentally, their task is to promote effective fellowship among general practitioners and to support them in programs that the Commonwealth nominates as really important.
MS WRIGHT: Okay. And do they also have a role in coordinating or assisting in coordinating care between GPs and other health carers in the system?
PROF LEEDER: That’s certainly one of the aspirations. The integration of care in this country with multiple groups paying for different services is something of a challenge, to put it mildly. But they are one of the participants in that and they hold a lot of promise for better coordination in the future.
MS WRIGHT: All right. Now, just still dealing with the overall structure of the health system and the allocation of responsibilities within it, there’s a demarcation between Commonwealth and the state levels in the system. Can you just provide us with a snapshot of which tier of government is responsible for which aspects of the health system.
PROF LEEDER: The Commonwealth – yes, certainly. The Commonwealth is the principal funding agent. And that occurs using revenue derived from taxation and the Medicare levy. And that’s allocated to the states, who are the key providers, especially of the hospital services. The Commonwealth also takes an active interest in the provision of community services. And so, if we’re thinking seriously about integrating care between hospital and community, which is certainly on the rise as a health policy matter, then we’ve got to bring both the Commonwealth and the states to a point of agreement about who resources what.
COMMISSIONER SACKVILLE: And the Commonwealth subsidises primary health care through service providers such as general practitioners.
PROF LEEDER: I’m sorry.
COMMISSIONER SACKVILLE: The Commonwealth subsidises the provision of primary health care ‑ ‑ ‑
PROF LEEDER: Absolutely, yes.
COMMISSIONER SACKVILLE: ‑ ‑ ‑ through agencies such as GPs through the Medicare system.
PROF LEEDER: Yes.
COMMISSIONER SACKVILLE: Yes.
PROF LEEDER: So that’s a really important point, that general practice is fundamentally funded by the Commonwealth in one form or another, yes.
MS WRIGHT: And the states, just speaking broadly, manage the public hospital ‑ ‑ ‑
PROF LEEDER: Correct.
MS WRIGHT: ‑ ‑ ‑ system. And the states, it’s also worth noting, that they regulate and are system managers for the state health system, the public hospital system.
PROF LEEDER: Yes. And the public health system, for example. The states take a very active role in relation to the practicalities of control in relation to the current virus problem – Coronavirus problem.
MS WRIGHT: I see. And I appreciate it’s first principles, but operating parallel to the public systems, of course, the private system. And on that, public/private there are two parts. We hear a lot about private health insurance and the attrition of people from private funds when premiums go up. What are your observations about what impact that’s having on the public health system?
PROF LEEDER: It’s always been a point of tension, really, since the advent of Medicare as to what private insurance covers and what Medicare covers. And it’s not an easy relationship. There is an anomalous, almost, financial interest in the maintenance of private health insurance through Commonwealth subsidy. And then the reciprocal of that is that people are able to use private health insurance in a public hospital. So the entanglement of those two is quite something. And it’s a point of contention. And some would argue that it diminishes both that there’s such a lack of clear division between the two.
MS WRIGHT: So it’s fair to say that in Australia we have various connected health systems, rather than one unified overall system. Would you agree with that?
PROF LEEDER: Yes. It’s connected. I think you can claim that that is the case, but connected in many respects by the way it’s financed.
MS WRIGHT: Okay.
PROF LEEDER: And – and there are opening up opportunities for much greater integration of care between what happens in the community and what happens in hospital, but we need to resolve some of the financial tensions between money that’s been given to public hospitals and the money that goes into general practice and other community services.
MS WRIGHT: Okay. And you touch on that in your statement to the Commission under the heading Reporting Mechanisms from paragraph 24. And one of the subjects you deal with here is how the health system in all its layers is funded. And you refer to there being multiple different reporting lines which follow the lines of financial support. And you say, paragraph 26, that these reporting lines are suited to a form of health service in which acute care dominates, and users of the system enter and exit on other side of limited episodes. And you say that having multiple payers with multiple accounting lines they can impede the provision of integrated care. So I just wanted to ask you briefly about that. Is the idea that if acute care is prioritised in the funding of the health system, then that tends to be what is prioritised in the delivery of health services?
PROF LEEDER: That certainly can happen. And there are political dimensions to this as well, because you can entertain the possibility that – if there was a budgetary restriction on the availability of emergency services, that would have profound political repercussions. Whereas, if the budgetary restriction was limited to the provision of community support, there may be much less political pushback if the financial resources are not adequate. So that’s the priority. You can’t envision a health system, frankly, in which acute emergency life-saving services is somehow not adequately funded.
COMMISSIONER SACKVILLE: Professor Leeder, you refer in paragraph 26 to integrated care.
PROF LEEDER: Mmm.
COMMISSIONER SACKVILLE: Would you mind just expanding on what you mean by “integrated care”?
PROF LEEDER: By that, I mean care that’s spread from the hospital into the community and follows the patient; especially one with a chronic problem. Let’s take the case of somebody who comes into hospital with diabetes, an acute episode, but it’s discovered, as a result of investigation, that they have eye trouble and vascular problems and all sorts of stuff. What’s going to happen to that individual? If they leave hospital and there’s no follow-through that’s adequate, then they are treated suboptimally. But I’m happy to say that diabetes – I’ve chosen a poor example, because diabetes is one of the conditions where there’s, really, very good integrated care these days.
So somebody coming into hospital treated with the episode, goes out, followed up at home, and is under regular surveillance to make sure eye problems and other things don’t happen. Or if they are, they’re treated promptly. But because – in moving from a modality of care in a public hospital across – or a private hospital, for that matter – into the community, then someone else picks up the tab. It’s a bit like – it used to be travelling by train across Australia you would have to change five times because the gauge would shift. There would be different gauges, different points.
COMMISSIONER SACKVILLE: Three foot six and four foot eight and a half.
COMMISSIONER ATKINSON: Five foot three.
COMMISSIONER SACKVILLE: Yes.
PROF LEEDER: Five foot three.
COMMISSIONER SACKVILLE: Yes.
PROF LEEDER: So the coordination of that care is absolutely critical. And it’s not – it’s got to be holistic. I mean, you can’t just focus on the biological needs of the patient or the client. The carers, in this circumstance, become critically important.
COMMISSIONER SACKVILLE: We hear a lot about cost shifting. I take it this is a highly-developed art within the health system?
PROF LEEDER: So integrated care – there’s a clear recognition that, with the ageing of population, many more people who would have died of a problem decades or even years ago now living – take heart attack, for example. It used to be the case in Australia someone would die of a heart attack at 45; not uncommon in the 60s.
Now it’s very uncommon. Someone has a heart attack, treated, stent, out. But they may then develop heart failure, so they need ongoing care. The episode is a minor part of the – and the same applies to the management of cancer, which has gone from being an acute devastating problem through to something now that’s chronic, meaning spread over years.
So the business of bringing the various modalities of care and their locations together is a really big challenge. And I might say that’s amplified if you’re considering how to manage care for, say, Indigenous communities; some terrible stories about what happens if someone needs dialysis, that if the social circumstances of that individual are not taken into account, then the hospital episode becomes almost irrelevant. So it’s a shift that I – I’m optimistic about a shift in funding occurring. We’ve seen that already in several states. New South Wales, there was an initiative three years ago to run a few demonstrator projects of integrated care, and they yielded some really very useful information. But it has got to be built into a new approach to funding. I think that’s the message.
MS WRIGHT: And, Professor, the Commission has heard evidence from a number of witnesses who have spoken about the need for a number of health carers for their children with intellectual disability, a whole team of health carers. And one witness, Rebecca Kelly, spoke of a fractured system and a lack of coordination in the care provided to her son, with her having to almost act as a conduit of information between doctors and other health careers, and following upon each episode of care. So it seems that coordinated care of complex patients, or patients with a number of health conditions, is a challenge for the health system. Would you agree with that?
PROF LEEDER: Most certainly agree. And I think we need to accept that there are many levels at which we can improve the communication, but beyond that, I would argue that we need to think very carefully about support for the carers. Our own study of people with chronic illness indicated to us just how critical family and friends are to the maintenance of good health. And there’s nothing like the advocacy of an individual who understands the patient or client well to facilitate that kind of conversation. But for that to happen, of course, there needs to be a reciprocal recognition on the part of the professionals that the carer has a valuable contribution to make and they need to be an informed participant in the care conversation. And there are good signs that that’s increasingly occurring, but we’ve got a distance to travel.
MS WRIGHT: Just still on this, your comments about there being multiple payers or multiple funders in the health system, could I just ask you what – in your view, what incentives could be built into reporting mechanisms or funding models to better cater for the needs of persons who require a more long-term and integrated approach to their health care, which includes people with cognitive or intellectual disability?
PROF LEEDER: It’s a very big question and a very big challenge. And it needs an awareness on the part of all of the funders and a willingness to commit to cooperative activity. Take integrated care as a concrete example, you really need the private providers and the state and the Commonwealth to come together around the care of the individual. There are big policy challenges there as well, and that’s something that I think could be put with value to the Commonwealth department to talk with you about ways they might envision that happening.
MS WRIGHT: Thank you, Professor Leeder. And then, the final part of your report deals with the current challenges in health and health care for Australia’s health system. Integrated care is one such challenge. Could I just ask you to just briefly provide an overview of where you see the main challenges today?
PROF LEEDER: The changing demographic profile of Australia is a big challenge, because we’re getting larger numbers of people who have chronic problems – and I’m not for a minute minimising the importance of chronic disability or illness in younger people, but the big burden is among people who are older. You can go for a wander through any of the public hospitals these days; you will find that the wards are occupied largely by people in their 80s and 90s. And that’s where the big challenge lies – the biggest challenge in how are we going to cope with that, and it’s an ethical challenge.
I mean, what do we think we’re doing in managing chronic illness, especially mental illness? I mean, that’s a big one in there. And dementia’s in there. I don’t think we’ve got the ethics of this sorted out. I don’t think we know – we haven’t had the intelligent health policy discussion in depth, to say what the purpose of all this is. And, you know, if you don’t have that clarity, then it’s very difficult to construct a program of care or finance or anything that computes in the long run. So I think there’s a real gap there.
MS WRIGHT: You refer to workforce planning in your statement. I just, finally, wanted to ask you about that. You’ve said that for the training of health professionals, in your view, it’s best to work with established graduates if one wishes to enhance skills. Training is an issue that the Commission is interested in, in relation to the needs of patients with cognitive disability. And the evidence suggests communication by or with health professionals may be a particular issue. And you were not asked specifically to comment on this, but I just wanted to take up your view with you about working with graduates. Training can happen at all levels, undergraduate or graduate level, as a junior doctor or nurse or other health professional, and further down the track, of course, the medical colleges for specialists. And if the Commission were to form a view that there needs to be some better training or more training of health professionals in the area of cognitive disability, at what level do you think it is best to start that training?
PROF LEEDER: I have a slightly mixed view on this, I suppose, having devoted a considerable proportion of my career to medical education. It would be weird if I said, “I wouldn’t bother with medical students.” But I would bother; I do bother. But I recognise that if – you need some kind of rapid turnaround on a lot of this stuff, and waiting for bright-eyed medical students that are entering the curriculum this year to come through and change things, you would be waiting a long time, like 20 years – 15 to 20 years. And much the same applies to the other health professions. There’s a lag between undergraduate education and practice of some years. So why would you not, then, direct your initial educational effort, assuming you had limited resources, to the people who are already out there? And many large teaching hospitals, for example, these days, have quite sophisticated programs of continuing education for all of the health professionals. That’s where I would put my money.
COMMISSIONER SACKVILLE: Are those programs compulsory?
PROF LEEDER: Yes. Yes. They are.
COMMISSIONER SACKVILLE: And what does a doctor in – for example, a general practitioner, what are the requirements for continuing education for such a practitioner?
PROF LEEDER: They have to demonstrate that they’ve fulfilled the college’s requirements. That includes attendance at training programs or workshops or facilitated groups, practical assessment and all the rest of it. So – and the same with all of the learned medical colleges. And in nursing, there is much the same. A professional accreditation and continuing accreditation becoming big ticket. And so, as I say, I think that is a place where scrutiny is deserved, to see whether what’s happening there accords with the needs that this Commission’s addressing.
COMMISSIONER SACKVILLE: Is membership of a college compulsory?
PROF LEEDER: It is if you wish to be a – well, almost, if I can put it that way. If you wish to be a specialist ‑ ‑ ‑
COMMISSIONER SACKVILLE: Does that mean no?
PROF LEEDER: I’m sorry?
COMMISSIONER SACKVILLE: Does that mean no?
PROF LEEDER: Well, I don’t know any specialist physicians, for example, who are not members of the college, nor surgeons or gynaecologists. I mean, you would putting yourself as a practitioner at immense risk.
COMMISSIONER SACKVILLE: So you could build into the continuing education programs ‑ ‑ ‑
PROF LEEDER: That’s the point.
COMMISSIONER SACKVILLE: ‑ ‑ ‑ a section on treatment of people with various kinds of disabilities ‑ ‑ ‑
PROF LEEDER: Absolutely.
COMMISSIONER SACKVILLE: ‑ ‑ ‑ including people with cognitive disabilities?
PROF LEEDER: Indeed. And I think – or I know you would find support through – most of the – the education is provided, for example, in New South Wales, through New South Wales Health. The colleges may set and stipulate what they expect their trainees to do. It’s up, then, to the state health system to make sure that happens. And groups are accredited by the colleges as to their adequacy. So if they don’t stack up, they don’t get accredited and then there’s a problem.
COMMISSIONER SACKVILLE: Yes.
PROF LEEDER: So I just think that would – I mean, it’s a personal view. I strongly support approaches to the undergraduate training, sure, but don’t expect much to happen for a while. Whereas – and the two go very well together. I mean, if you’re getting a degree of sophistication among the people who are already in practice in these fields, then that will percolate down to the – to the students.
COMMISSIONER SACKVILLE: Thank you.
MS WRIGHT: Thank you, Professor Leeder. If it pleases the Commission, that’s all the questions I have.
COMMISSIONER SACKVILLE: Professor Leeder, thank you very much for coming and giving evidence.
PROF LEEDER: My pleasure.
COMMISSIONER SACKVILLE: We very much appreciate it. Thank you for your statement.
PROF LEEDER: Thank you for the courtesy of the invitation to be here. I appreciate that.
COMMISSIONER SACKVILLE: Thank you.
<THE WITNESS WITHDREW [10.31 am]
MS WRIGHT: I tender the statement and the CV of Professor Leeder, which is exhibit 4-8.
COMMISSIONER SACKVILLE: Thank you. Ms Eastman, where do we head?
EXHIBIT #4-8 STATEMENT OF PROFESSOR STEPHEN LEEDER DATED 12/02/2020 (STAT.0057.0001.0001)
EXHIBIT #4-8.1 CURRICULUM OF PROFESSOR STEPHEN LEEDER DATED 12/02/2020 (EXP.0018.0001.0001)
MS EASTMAN: If the Commission pleases, I call Julian Trollor.
COMMISSIONER SACKVILLE: Thank you. Professor Trollor, if you would be good enough to come forward. Thank you.
<JULIAN NORMAN TROLLOR, SWORN [10.32 am]
<EXAMINATION BY MS EASTMAN
COMMISSIONER SACKVILLE: Thank you. Please sit down, Professor Trollor. Ms Eastman will now ask you some questions. But at the outset can I thank you for your very detailed statement, which we all have read.
PROF TROLLOR: Thank you.
MS EASTMAN: Your name is Julian Norman Trollor.
PROF TROLLOR: It is.
MS EASTMAN: And you are a Professor in the School of Psychiatry at the University of New South Wales.
PROF TROLLOR: I am.
MS EASTMAN: You prepared a statement for the Royal Commission.
PROF TROLLOR: I have.
MS EASTMAN: And that’s a statement dated 11 February this year.
PROF TROLLOR: That’s correct.
MS EASTMAN: And you have one correction to the statements.
PROF TROLLOR: I do.
MS EASTMAN: That’s at paragraph 177.
PROF TROLLOR: That’s correct.
MS EASTMAN: So it’s page 28.
PROF TROLLOR: Yes.
MS EASTMAN: And you wanted to change the reference from 15 to 25; is that right?
PROF TROLLOR: That’s correct.
MS EASTMAN: I will just check that sounds – okay. So with that change the statement’s otherwise true and correct to the best of your knowledge and belief?
PROF TROLLOR: Yes.
MS EASTMAN: Thank you. So Commissioners, I might do the exhibit for this statement now.
COMMISSIONER SACKVILLE: Yes.
MS EASTMAN: So you will find a copy of the statement in part B behind ‑ ‑ ‑
COMMISSIONER SACKVILLE: It’s all right. We have it on screen, thank you.
MS EASTMAN: And so it will become exhibit 4.9.
COMMISSIONER SACKVILLE: Thank you.
EXHIBIT #4-9 STATEMENT OF PROFESSOR JULIAN TROLLOR DATED 11/02/2020 (STAT. 0049.0001.0001)
EXHIBIT #4-9.1 CURRICULUM VITAE OF PROFESSOR JULIAN TROLLOR (EXP.0015.0001.0001)
MS EASTMAN: Professor Trollor, I want to start with just outlining your background and qualifications and experience. But this statement seeks to address a number of issues in relation to identifying problems in the health system for people with cognitive disability. And you also seek to outline ways forward in terms of addressing the problems that you’ve identified. So I thought what we might do, after covering your qualifications, is to work through your statement and stop off at each point in terms of each particular issue and have a discussion about that. It’s likely that some of the Royal Commissioners may want to ask you questions as we go along. So Commissioners, I hope that helps. And for those in the room with access to the statement, the approach that I wanted to take with Professor Trollor’s evidence this morning. So let’s start with you. You are a neuropsychiatrist.
PROF TROLLOR: That’s correct.
MS EASTMAN: And you have over 30 years’ experience as a medical practitioner.
PROF TROLLOR: Correct.
MS EASTMAN: And since 2009 you’ve held the positions of Inaugural Chair of Intellectual Disability Mental Health and the head of Department Of Developmental Disability Neuropsychiatry within the School of Psychiatry at the University of New South Wales; is that right?
PROF TROLLOR: Yes.
MS EASTMAN: And in terms of that being inaugural chair, that’s a position that has historically been funded by the New South Wales Government.
PROF TROLLOR: That’s correct.
MS EASTMAN: Through the Department of Health and through the Department of Family and Community Services.
PROF TROLLOR: Yes.
MS EASTMAN: So your team at the UNSW Centre, can you tell us a little bit about the team and then I will come back to the rest of your qualifications.
PROF TROLLOR: Yes. Thank you. Our team functions to, essentially, improve health policy practice and supports for people with intellectual and developmental disabilities. We build capacity through both teaching, health promotion, development of education and resources, and the conduct of various professional activities. We have three main streams of work: consultancy, providing clinical consultations and sharing expertise; making recommendations of advocacy and policy and legislative reviews; and we also provide a comprehensive research program that really investigates the health and wellbeing of people with intellectual and developmental disabilities.
MS EASTMAN: Is there any other centre that’s comparable to you within any of the universities in Australia?
PROF TROLLOR: Not in the field of intellectual disability and developmental disability and mental health, specifically.
MS EASTMAN: So you’re unique in terms of the work that you do within the Australian university system.
PROF TROLLOR: The department is, yes.
MS EASTMAN: Thank you. Now, you’re also a clinical academic in the mental health program at the South-eastern Sydney Local Area Health District.
PROF TROLLOR: I am.
MS EASTMAN: And so you continue to practise?
PROF TROLLOR: Yes, I do. I work mainly to receive referrals for people with complex needs, people with intellectual and developmental disability with high needs, and to provide support for other specialists who are treating them.
MS EASTMAN: And in terms of your qualifications, both undergraduate and postgraduate, you’ve set them out in some detail in paragraph 6 of the statement.
PROF TROLLOR: I have, yes.
MS EASTMAN: And you’re a Fellow of the Royal Australian and New Zealand College of Psychiatrists.
PROF TROLLOR: That’s correct.
MS EASTMAN: All right. So, prior to your current role, you’ve held roles as the senior research fellow at the University of New South Wales, Sydney Brain and Ageing Program.
PROF TROLLOR: That’s correct.
MS EASTMAN: So that’s now called the Centre for Healthy Brain Ageing.
PROF TROLLOR: Yes.
MS EASTMAN: And, just pausing there, you’ve heard Professor Leeder’s evidence earlier this morning in relation to issues in the health system. And one he identified is ageing. Is that an area of which you’ve had particular research interest?
PROF TROLLOR: Correct. Both in the general population and in people with intellectual and developmental disabilities. And recognising this is a group for whom frailty as part of the ageing process is brought forward by at least 25 years.
MS EASTMAN: Right. And you’ve also been a staff specialist in neuropsychiatry in the Neuropsychiatric Institute at the Prince of Wales Hospital; is that right?
PROF TROLLOR: That’s correct.
MS EASTMAN: Okay. Now, moving then to your areas of research, you provided the Royal Commission with a copy of your CV.
PROF TROLLOR: Yes.
MS EASTMAN: And that’s a lengthy document. That’s no criticism, but it’s a lengthy document. And I think I counted over 140 published peer reviewed papers. Would that sound right?
PROF TROLLOR: I’m not exactly sure, yes. Some ‑ ‑ ‑
MS EASTMAN: And many other published papers and research work and presentations.
PROF TROLLOR: Correct.
MS EASTMAN: So, in terms of your area of interest in research at the present point in time, the focus is on intellectual disability and people on the autism spectrum.
PROF TROLLOR: Yes.
MS EASTMAN: And much of the work that you’ve been doing is to try to look at systems and patterns in relation to that cohort and how their health is being managed in the Australian system over a period of time.
PROF TROLLOR: Yes.
MS EASTMAN: And would it be fair to say, reading some of your research papers, that you also draw on some of the international research?
PROF TROLLOR: That’s correct. I’m aware of it.
MS EASTMAN: I haven’t asked you this before, but, looking at some of the international research, would it be fair to say to look beyond Australia that some of the key places in terms of research internationally is in the UK and the US?
PROF TROLLOR: Yes, that’s correct.
MS EASTMAN: There’s also some research in Canada.
PROF TROLLOR: Yes.
MS EASTMAN: But, beyond that, what are the other sources of research that you’ve found helpful internationally?
PROF TROLLOR: From the Netherlands, particularly.
MS EASTMAN: And what is it about the research in the Netherlands that might be of interest to this Royal Commission?
PROF TROLLOR: I think it’s a unique health care system for people with intellectual disability, which provides entirely specialised supports in the area of health for that group.
MS EASTMAN: All right. And I’m not suggesting, Commissioners, that our reach extends to a hearing in the Netherlands ‑ ‑ ‑
COMMISSIONER SACKVILLE: Why not?
MS EASTMAN: ‑ ‑ ‑ but if there’s particular matters that would be of assistance to the Royal Commission in terms of other models, if you could let us know, that – we would be most grateful.
PROF TROLLOR: I will.
MS EASTMAN: Our focus, though, is on the current system in Australia. And your statement addresses a number of issues. And you’ve set them out in the introduction in terms of what we will look at. So, looking at paragraph 15, you say there that:
The current healthcare landscape in Australia is one of a lack of preparedness for the needs of people with developmental disabilities.
And:
This lack of preparedness manifests on every level (practitioner, services and policy) in each health care compartment (primary, specialist and acute care setting) and in services across lifespan (from childhood to later life).
Does that broadly reflect the overview that Professor Leeder has provided us with this morning, if one looks at the areas of primary health through to secondary and tertiary hospital settings and allied health services? Are you saying there’s a lack of preparedness across every single area?
PROF TROLLOR: I am.
MS EASTMAN: And you say that:
Such systemic lack of preparedness is a major contributor to the stark mental and physical health disadvantage experienced by people with developmental disability compared to the rest of the Australian population.
So we want to explore the reason why, as we work through your statement. But one other issue I wanted to ask you about in that context is how does this fit in with a system of interconnection in terms of different types of services available? And so that I mean we have health service, but we also have disability services in a range of areas. How does that work?
PROF TROLLOR: One of the very important things is that people with intellectual and developmental disabilities need support across a range of different areas in life. Currently we have very limited connectivity between the health system and disability supports for people. And this lack of interconnectedness has been exacerbated by NDIS, which in many ways is a wonderful model, but the individual funding model, essentially, means that the state-based equipping and connections between those parts of the services are now missing.
MS EASTMAN: All right. And, in terms of the concern about the lack of preparedness, you’re not suggesting, are you, in your statement that doctors have overall done a poor job, but your focus is very much on looking at systems and looking at why failures have occurred over a period of time; is that right?
PROF TROLLOR: That’s correct.
MS EASTMAN: Okay. So sort of working through your statement, the other issue that you raise by way of introduction is the health disparities can be illustrated by examining the research data. And that is in terms of the data that’s available, people with intellectual disability and people on autism spectrum. Now, you say that in paragraph 17. But as we go through your statement, almost every third paragraph, I think, you raise an issue about the availability of data or you highlight the lack of data. So, in terms of talking about research data and the introductory comments that you make in paragraph 17, what can you tell us about the nature and the source of data in Australia?
PROF TROLLOR: We currently have very limited capacity to understand the health outcomes for people with intellectual disability and autism, because our data systems are not connected and do not identify people with these conditions accurately.
MS EASTMAN: So what are the primary sources of data in Australia? Do we start with something as simple as the Australian Bureau of Statistics collection of census data or are we talking about very specialised forms of data collection?
PROF TROLLOR: I’m specifically talking about data which looks at health outcomes for people. So, for example, if we look at the accuracy of coding of the presence of intellectual disability in health datasets alone, we see very poor identification of those individuals within that system.
MS EASTMAN: Now, you say in paragraph 18 that what you seek to do is to summarise the current health status and the core health care needs for the cohort of people with intellectual disability and people on the autism spectrum. So to introduce those topics, I think you very helpfully set out some definitions so that we understand the relevant cohort. So can we start with intellectual disability ‑ ‑ ‑
COMMISSIONER SACKVILLE: So just before we get to the definition, can I just come back to the point you were making about data. What is it that you would like to know that we don’t know because of the deficiencies of data? What information would we have if we had a much better system of compilation, collection, analysis of data relating to people with cognitive disability?
PROF TROLLOR: I would like to know the health outcomes and to have them routinely reported for these groups. I would also like to know how the health services system interacts with other supports for people with intellectual disability and those on the autism spectrum to help their participation in life.
COMMISSIONER SACKVILLE: Has someone designed a mechanism, a methodology for collecting this kind of data?
PROF TROLLOR: Over time, we have developed a data system in New South Wales; that’s brought together numerous different datasets from different sectors, in order to understand the population health needs and outcomes for these groups. There has been a move to develop a national disability data asset, which is currently under investigation. There are limited trial projects that – bringing together data in different states. But, as yet, not all states or territories have signed up to this system, as far as I’m aware.
COMMISSIONER SACKVILLE: Does that mean that, in your view, the problem is under control, in the sense that people are working on it and a solution will be found? Or is it an issue that requires a lot more work and resources?
PROF TROLLOR: Whilst a notional commitment has been made to a national disability data asset, I think it remains to be seen whether it is feasible, supported and adequately funded, and then made available to the public and to researchers for its use.
COMMISSIONER SACKVILLE: And what can this Commission do to hasten the process?
PROF TROLLOR: One of the most helpful things would be a recommendation to the effect that such a data system should be made available, and that outcomes should be routinely reported.
COMMISSIONER SACKVILLE: And you could tell us what that recommendation should look like?
PROF TROLLOR: From some experience in New South Wales, yes. It may or may not generalise to other states or territories. I think it remains to be seen what is put together in such a data asset and, therefore, what could be reported from it.
COMMISSIONER SACKVILLE: Yes. Thank you.
MS EASTMAN: All right. So we will come back, just to make sure that we understand, working through your statement, when you’re talking about intellectual disability and autism, how you define those matters, so that we’re clear about the relevant cohorts. So paragraph 19 in your statement, you deal with a definition of intellectual disability. And this is a form of developmental disability characterised by impaired mental abilities and reduced ability to manage common demands of day-to-day life. And you’ve described that as adapted functioning. Is that a technical expression that’s used in the literature or used in terms of medical practice, adapted functioning?
PROF TROLLOR: It is more so in the disability literature.
MS EASTMAN: All right. And then, in terms of the classification of disability in paragraph 20, you’ve said that intellectual disability can be classified as mild, moderate, severe and profound. And the Commission has heard that there are concerns about people with intellectual disability being given labels or to have classifications. In terms of the way in which you are dealing with the classifications in this paragraph and how it relates to the content of the statement, what is the purpose of a classification either as mild, moderate, severe or profound? And then, secondly, how do we know whether somebody meets one of these particular classifications? Is there a particular test or assessment that has to be done?
PROF TROLLOR: A person with an intellectual disability can be assessed as having very – various severity of intellectual disability. The purpose of understanding that is to understand the support needs of the person, which can be better tailored if we understand the severity of the disability. The relevance to health is that people with milder forms of intellectual disability may have good communication skills and be largely independent and so may be able to access health care more readily along conventional lines, and their needs may be able to be met within the standard health care systems with some adjustments.
MS EASTMAN: So if we were to look at a scale of mild through to profound, do we determine that based on what you’ve described in the paragraph above about the extent to which one’s looking at impaired mental ability, together with the ability to manage with common demands of day-to-day life? Is that how one might go about working out whether you fit into category 1 through to 4?
PROF TROLLOR: That’s correct. Standardised testing is often administered and as an assessment of the person’s functional abilities.
MS EASTMAN: All right. And then, as you say in paragraph 20, intellectual disability is a lifelong condition, and the impairments need to be present during the developmental period to deal with a relevant diagnostic criteria. One issue, I think, which has come up in the evidence to date is that, when we think about intellectual disability, we’re talking, in some cases, a health condition that can’t be cured. And so the fact that intellectual disability cannot be cured itself might skew the way in which we look at health concerns and health conditions of people with intellectual disability. Has that been an area that you’ve investigated?
PROF TROLLOR: So intellectual disability is best understood as a developmental difference. We arbitrarily say someone has an intellectual disability by virtue of their cognitive abilities and functional abilities. This helps us, in a way, support people better, but it is certainly somewhat arbitrary. And I think we have to understand that we have a person who may have particular needs on the basis of disability.
MS EASTMAN: And we will come to issues around diagnostic overshadowing and the like shortly. So in terms of the population, as you say, or the prevalence of intellectual disability, worldwide it’s between one and two per cent; is that right?
PROF TROLLOR: That’s right.
MS EASTMAN: And then for Australia, approximately 1.8 per cent of the population has intellectual disability. So that covers the whole field of mild through to profound; is that right?
PROF TROLLOR: That’s right.
MS EASTMAN: And then what’s the source of that statistic of 1.8 per cent of the Australian population?
PROF TROLLOR: So these are from Australian national statistics.
MS EASTMAN: And in terms of that statistical work, is there a particular definition that is used to identify a person with intellectual disability? Are you aware of that?
PROF TROLLOR: It roughly maps on to the definition we’ve been dealing with.
MS EASTMAN: All right. And so you say more than half a million Australians live with intellectual disability. But of that cohort, 60 per cent experience profound or severe impairments in core activities of daily living. Can I ask you, at a practical level, what does that mean?
PROF TROLLOR: That means that people need significant supports in order to participate to the fullest extent possible in daily life.
MS EASTMAN: And for this cohort, so the over 60 per cent in profound and severe impairment, where are we likely to find such people in the community?
PROF TROLLOR: Many people with intellectual disability live in family homes. Some people live within community group homes supported by professionals in the disability services sector.
MS EASTMAN: So has there been, in terms of the research, any matching, in terms of the level of severity of the impairment, as to where people might reside?
Yesterday we had some evidence in relation to two children who were living in their family home. But over the course of this hearing, the Royal Commission will also hear of people who live in group homes and some, even young people, who now reside in aged care facilities. Is there any data that you’ve come across that looks at the prevalence of people with profound or severe impairment in terms of their living conditions, and the circumstances of their residence?
PROF TROLLOR: I can’t quote the specific data; just from my clinical awareness and experience, many people with mild intellectual disability live independently, many people live with families. And depending on the severity of intellectual disability, it tends to be that people with higher support needs and high levels of disability are more likely to live within – congregate living in group homes.
COMMISSIONER SACKVILLE: Can I be clear about these figures, so we know what we’re talking about. This excludes age-related impairments such as dementia, Alzheimer’s and so on?
PROF TROLLOR: That’s right.
COMMISSIONER SACKVILLE: So we’re not talking about that kind of age-related cognitive ‑ ‑ ‑
PROF TROLLOR: No. We’re not. However, some people with intellectual disability who are younger also live in residential aged care facilities because of the limited options available to them.
COMMISSIONER SACKVILLE: I understand. Yes. Thank you.
MS EASTMAN: I’m asking these questions because one area of concern for the Royal Commission is people who may not be visible, in the sense that they live in very closed or segregated settings, and so their, perhaps, participation in the broader community might be something that the rest of the community is very unaware of and might be very limited. So is that something that you’ve focused on in your research for people with intellectual disability in very closed settings?
PROF TROLLOR: Not specifically. However, I’m aware of the difficulty that those individuals may have in accessing good health care, in the sense that their access may be dependent on gatekeepers who are supporting them.
MS EASTMAN: Okay. And I think we will come, in some time, to some work that you’ve been doing in relation to the criminal justice system and the population of people with intellectual disability in detention, and some of the research in terms of the issues of concern around health and other for that population. And I would include those people as in a closed setting as well. So we turn to autism. So you deal with autism starting at paragraph 22 of the statement.
COMMISSIONER SACKVILLE: Sorry. Commissioner Galbally has a question.
COMMISSIONER GALBALLY: Yes. I just wanted to come back to the group home setting, to ask you whether you think that would be an important area for research, both to ascertain who’s in there, in terms of intellectual disability, and also in more detail about gatekeeping and all the issues to do with health care.
PROF TROLLOR: Thank you, Commissioner. I think it is a really relevant area. And if we had a more cohesive data system, we could also understand where people are living and its impact on health outcomes and on access to health care. So I think that’s a great suggestion.
COMMISSIONER GALBALLY: Thank you.
MS EASTMAN: So to autism. So you’ve described autism spectrum disorder as a developmental disorder characterised by impairments in social communication and restricted or repetitive behaviours, interests or activities. And would it be fair to say that, in terms of this particular disorder, the question and functioning is an issue? So you would look at daily functioning, ranging from mild to profound.
PROF TROLLOR: That’s correct.
MS EASTMAN: Is that a similar type of exercise in looking at gradation of functioning to intellectual disability or is there a different diagnostic tool?
PROF TROLLOR: It’s a similar concept, in terms of the intensity of the support needs the person may have.
MS EASTMAN: And also, with this cohort, 60 per cent of people with autism have a disability involving a profound or severe restriction on core activities and daily living.
PROF TROLLOR: That’s correct.
MS EASTMAN: So you say in paragraph 23 that from some data in 2015, approximately one in 150 Australians, or 0.7 per cent of the population, are estimated to be on the autism spectrum. Is the data from 2015 the most recent data available?
PROF TROLLOR: To my knowledge.
MS EASTMAN: Okay. But in paragraph 24, you say:
Over the past 70 years, the reported worldwide prevalence of autism has increased dramatically from four in 10,000 people, now, to one in 100 people.
And that:
The Australian statistics reflect this rise with a 79 per cent increase in the number of children diagnosed with autism since 2009.
So that’s quite a startling statistic.
PROF TROLLOR: Yes.
MS EASTMAN: And it necessarily begs the question why such a significant increase – what does that – why do we have that? Where does it come from and how do we explain that?
PROF TROLLOR: There are many influences over how statistics appear and are reported. One of the significant issues is that the way we define autism has changed significantly over time to a broader concept united under autism spectrum disorders within the current diagnostic manuals. This means that many more people are, essentially, fitting within that developmental difference. And so the statistics reflect an increase. There has also been a much greater awareness of autism, through initiatives such as the Autism Cooperative Research Centre and Autism Awareness, with advocacy through autism support networks. And this has, I think, meant many more parents are bringing their children forward for assessment. There’s also been an increased awareness of people of adult years who may not have been afforded a diagnosis in childhood because there was not a focus during their lifetime and for whom diagnosis is made for the first time in adulthood, and these people are also in these statistics.
MS EASTMAN: When you talk about the diagnostic criteria, is that going back to the likes of the DSM, and that we looked at diagnostic criteria through the lens, if I can use that word, of psychiatric health?
PROF TROLLOR: That’s right. That’s still where our main criteria sets are housed, is within mental health, even though now autism is conceptualised as a developmental difference, rather than a condition.
MS EASTMAN: So how do we – how do we reconcile a process which allows for diagnosis through a health or through a psychiatric model, but then treat the condition as one of intellectual disability? Does that raise challenges in terms of both identification for people with autism and then the impact of that diagnosis in terms of how we might treat quite a large prevalence now in schools, in employment, in economic activity and then generally in the health system?
PROF TROLLOR: It does raise a conundrum that I think hasn’t been resolved. We do need some way of identifying people who may require some support, but, yes, the autism community expects us, quite rightly so, to view autism as a developmental difference.
MS EASTMAN: Is this coming back to the issue that we just talked about earlier about interconnectedness? Would this be an example of the need for there to be interconnectedness not only in terms of diagnostic approaches, but also then ongoing management?
PROF TROLLOR: Yes. It’s also one of identity for people with intellectual disability and autism, who, far from being seen within a deficit model, wish to be viewed as valued members of society who make valuable contributions. And I think the shift away from the medical conceptualisation of disability is a very important one to acknowledge.
COMMISSIONER SACKVILLE: Does the concept of autism, as you’ve defined it and explained it, include Asperger’s, for example?
PROF TROLLOR: That’s correct.
COMMISSIONER SACKVILLE: Asperger’s can be very mild and it can be quite severe. Is there a difficulty about having a classification that is so all encompassing?
PROF TROLLOR: I think there is. And certainly people’s health needs would vary considerably depending on the level of severity of the condition, yes.
COMMISSIONER GALBALLY: You may come back to it later, but I wondered if you would like to elaborate a little more on the medical model of disability and the social model of disability. And you, obviously, see the two connected, but I think it’s really very important from your point of view, isn’t it?
PROF TROLLOR: It is an important issue, one which historically, as we’ve shifted away from a medical model, has largely meant that the health professionals have turned their back on disability. And one of the downsides of that is, indeed, that there’s an unskilling of the medical workforce and an unequipping of the health services sector around the health needs of people with intellectual and developmental disabilities. So, whilst there’s been tremendous progress around the demedicalisation of disability, which I fully support, there’s also been an unintended consequence.
MS EASTMAN: So next you deal with where intellectual disability and autism can coexist. And in terms of what you say in paragraph 25 is that:
While autism and intellectual disability are separate developmental conditions, approximately 1.08 people in every thousand are estimated to have both intellectual disability and autism.
And that:
Dual diagnosis has been linked to poorer health status and more complex health care needs across the lifespan.
So can I – just pausing there. What is the way in which both autism and intellectual disability may be diagnosed or identified? And we had some evidence yesterday from Rachel Browne, whose son lived with Down syndrome. And then the issue of whether the child might have autism arose once he started school, and that then led to a path that took up to four years before there was then a diagnosis of autism, as well. So what’s likely to happen in terms of having a dual diagnosis? Is there one that’s likely to present first that could mask the other, or vice versa?
I suppose related to the question that Commissioner Galbally asked is if it we’re looking at two coexisting, and they’re all a species of intellectual disability, and are we starting to put a very medical model on a coexistence of the two disability, rather than just treat one generally as intellectual disability? Sorry. That’s a very long and wordy question. I hope you can follow what I’m saying.
COMMISSIONER SACKVILLE: You can choose which of the eight questions that Ms Eastman asked to answer.
MS EASTMAN: I was trying to be efficient.
PROF TROLLOR: My colleague, Dr Jacqueline Small, is an expert developmental paediatrician and she may have some clarifications. But when there is a developmental difference noticed for a child by a parent or a general practitioner, usually they’re referred to a comprehensive developmental assessment service. And, obviously, people are assessed in terms of both the presence of intellectual disability, autism or whatever disability – developmental difference is – is under concern. So the two can be assessed differently.
Obviously, because autism spectrum disorder is characterised by problems with social communication, those are judged relative to the understanding of the person’s intellectual ability, as well. So that the baseline for the judgment on the presence of the autism spectrum symptoms takes into account the overall functioning of the person. So I think certainly can coexist and certainly can be separately diagnosed, but, as I say, Dr Small may have further suggestions.
MS EASTMAN: We’ll ask her this afternoon. So now I want to turn to the importance of a human rights framework, which you’ve identified at the outset of your statement, and you deal with this in paragraph 29 and following. And you refer there specifically to the UN Convention on the Rights of Persons with Disabilities. And, to the extent that you’ve place some importance on the human rights framework, how does this manifest in a practical level in terms of the way in which both medicine is practised, but also the development of health policy? Do you see reference to the Convention or a human rights approach being a feature of both practice and the policy of health?
PROF TROLLOR: So the Article 25 of the UN Convention deals with the right to health. And, essentially, Australians with disabilities are to enjoy the highest attainable standard of health without discrimination on the basis of disability. So this is a very clear statement which – to which Australia has agreed in its signing and ratification of the UN Convention. But, in my opinion, this goal is not currently met for people with intellectual disability and autism. It – to do so really requires clinicians and health systems and policies that understand and respond to the complex health needs of these groups. And this is simply currently not done, these groups are not routinely incorporated into health policy or health services systems.
MS EASTMAN: So, just breaking that up, in terms of day-to-day practise of health, be it visiting a GP, attending hospital, the way in which pathology services are administered, do you see a human rights framework as having any relevance on the day-to-day delivery of those health services?
PROF TROLLOR: It has high relevance for the accessibility of those services for people with disabilities, but that’s currently not being translated into the realisation of improved access for people. Simply, I think, at the coalface there’s a lack of awareness of the health needs and the communication needs and how to interact with people with intellectual disability or autism or both. And I think this provides a major challenge.
MS EASTMAN: Do you think part of it might be that, in terms of a health practitioner’s perspective – and I’m, perhaps, generalising here – is that their relationship with their patient with intellectual disability is to treat and assist that patient, not necessarily to learn from the patient about forms of communication or what the particular needs or issues might be? Do you think even the dynamic of patient/doctor relationship has a bearing on how a human rights model might impact on day-to-day practice at the coalface, as you say?
PROF TROLLOR: It does. I think many doctors do an excellent job, and many go to great lengths to, essentially, adopt reasonable adjustments for the people that they are seeing. But, on the whole, I think our medical profession lacks the knowledge, skills and attitudes required to do a good job overall. Partly there’s a lack of awareness right from medical school, a lack of – a lack of – I think the right values in practice in relation to these groups.
MS EASTMAN: And at the health policy level, governments might say that these human rights are expressed in very aspirational terms, and the nature of these rights are one called progressive realisation, so they can’t be realised overnight. Things take time and they cost a lot of money. And how do you respond to those types of contentions, if it’s put against you that not realising the goal for people with intellectual disability has to take into account the cost and the time involved in developing and implementing policy?
PROF TROLLOR: I would have to say that such a statement makes me somewhat frustrated. The health status of people with intellectual disability has been known for many years. My esteemed colleague Professor Helen Beange published mortality statistics 25 years ago.
MS EASTMAN: I think she was present here at the first day of the hearing ‑ ‑ ‑
PROF TROLLOR: Yes.
MS EASTMAN: ‑ ‑ ‑ keeping an eye on us.
PROF TROLLOR: And numerous others, Dr Seeta Durvasula, Alan Bittles from Western Australia, Jenny Bourke from Western Australia, have published since. And, despite taking these and other more recent statistics, including our own, to various places for hearing, we find a sympathetic response, but an incremental action, rather than a whole of picture response, and a fast tracking of a really significant systemic change.
MS EASTMAN: Does it need to be incremental? Is that not the reality of a very vast and complex health system?
PROF TROLLOR: There are some things that I think can be implemented relatively rapidly that would make substantial difference. And there is evidence that those are the sort of changes that are occurring in other countries, internationally, who are progressive with these kind of initiatives. So I think we can do it better.
MS EASTMAN: And so we’re going to identify some of them, I think, when we get to that part of your statement. Commissioners, I’m about to turn to the next topic, which is moving from some of these introductory concepts into health care services and needs and looking at issues in terms of comorbidity.
COMMISSIONER SACKVILLE: Ms Eastman, just so we know about timing, could we have – plan to have the morning tea adjournment at about 10 minutes time?
MS EASTMAN: Well, I was going to suggest if you wanted to have the morning tea now, if that was convenient, before I move on to the next topic, and then that ‑ ‑ ‑
COMMISSIONER SACKVILLE: All right. Well, that’s ‑ ‑ ‑
MS EASTMAN: ‑ ‑ ‑ might neatly ‑ ‑ ‑
COMMISSIONER SACKVILLE: Professor Trollor, we’ll have an adjournment of maybe 15 minutes or so and then we shall resume. Thank you very much.
MS EASTMAN: Thank you.
ADJOURNED [11.12 am]
RESUMED [11.37 am]
COMMISSIONER SACKVILLE: Yes. Ms Eastman.
MS EASTMAN: Thank you, Commissioner. Professor Trollor, I think we’re up to that part of your statement, at paragraph 31. And this is the part where you start to introduce health care and services and needs. And this part of your statement seeks to highlight the physical and mental health comorbidities, core adaptive functioning impairments and other vulnerabilities that commonly occur in populations with intellectual disability and autistic populations. And so the importance of identifying these issues is to identify the area of need and then, in turn, understand the nature of that need and then, in turn, explore how to address those needs in terms of addressing some of the issues of concern. Is that fair enough, as to why we ‑ ‑ ‑
PROF TROLLOR: Yes.
MS EASTMAN: ‑ ‑ ‑ need to go through this step first?
PROF TROLLOR: That’s a good summary.
MS EASTMAN: Starting with the two populations and the concept of multiple comorbidities, what you say in your statement, at paragraph 32, is, in addition to the primary developmental condition, people with intellectual disability and autistic people have a higher number of co-occurring physical and psychiatric morbidities. And is it fair to say that this is nothing new and that there has been research over many years, including some important research done in 1995? And with respect to the 1995 research – and that was a large survey study, was it?
PROF TROLLOR: That’s right.
MS EASTMAN: What came out of that research in 1995?
PROF TROLLOR: Some of the key findings of Professor Helen Beange’s seminal research in this area was that within a relatively affluent population in northern Sydney, people with intellectual disability experienced very high rates of other health disorders, and half of those were previously known by the health practitioners treating them. So, in fact, half of the concerns related to health were unknown. The population also had quite significant increased risk of death. And this is a seminal study to which I was referring earlier.
MS EASTMAN: What was the impact of this research or this study on either delivery of health services or identification of health needs for people with intellectual disability back in the mid-1990s?
PROF TROLLOR: It’s fair to declare that I wasn’t working in the field at that point. And my understanding comes from discussions with Professor Beange over many years, in which she laments the lack of action taken in response to not just her paper but many others that also document the poor health trajectories of people with intellectual disability.
MS EASTMAN: All right. And, then, in terms of – jumping to paragraph 35. So there’s some more recent research undertaken on a cohort of people with intellectual disability. And the outcome of that research reported 11.04 comorbidities per person. That seems, to a layperson such as myself, as to be extremely large. Is that right?
PROF TROLLOR: That is a very high rate of other health conditions, but I think we should remember that the way we assess these conditions and the thoroughness of that will determine how many conditions we’re able to see. And these can be ranging; anything from a very serious condition, such ischaemic heart disease, through to something which may seem relatively trivial yet might be significant for a person, such as an ingrown toenail which could later become septic.
MS EASTMAN: And for autistic people, notwithstanding the conversation we had a little earlier about the increase, in terms of people identified as in the cohort of autistic people since 2009, is it the case that recent research has identified an over-representation of comorbidity conditions in that cohort?
PROF TROLLOR: That’s correct. Most of the research in this area is international.
MS EASTMAN: So has any study specifically been undertaken in relation to the Australian population?
PROF TROLLOR: There are currently a number of studies that are being run, sponsored by the Autism Cooperative Research Centre, through various academic departments. I’m privileged to be involved in one and leading the Australian study of adults on the autism spectrum; that study is documenting the health needs. Others have as well.
COMMISSIONER SACKVILLE: Professor Trollor, I appreciate that this section of your statement, of course, is a summary of studies, and some studies that are quite extensive, but they do seem to be pregnant with possibilities. If, in fact, there was a study done in the mid-1990s that suggested not only, well, people with intellectual disability might need to have multiple medical disorders but some were serious and some were undiagnosed – now, I assume – or an inference that might be available from that sort of material is that the increased death rates, and that is to say lower life expectancy, is attributable, in part, to the failure to diagnose illnesses or conditions that ordinarily would be diagnosed. Now, is that a fair inference? Is it supported by the evidence subsequent to 1995?
PROF TROLLOR: Yes. That’s correct. That, in general, people with intellectual disability and those on the autism spectrum are groups for whom a range of health conditions are either not known or are poorly managed, and that the ultimate implication of these are poorer trajectories in terms of a health status. And for some individuals, sadly, premature death.
COMMISSIONER SACKVILLE: Are we able to quantify that?
PROF TROLLOR: Yes. For example, some research from our own group showed that the proportion of potentially avoidable deaths in people with intellectual disability was 38 per cent of all deaths that have occurred within a six and a half year time period in New South Wales.
COMMISSIONER SACKVILLE: And that compared with the general population?
PROF TROLLOR: Of 17 per cent of that same time. So more than doubling of the proportion of potentially avoidable deaths.
COMMISSIONER SACKVILLE: So as far as your experience and expertise in this area are concerned, there is a link between the higher death rates and poor management of multiple health conditions of people with cognitive disability and autism?
PROF TROLLOR: My observations would agree with that, yes.
COMMISSIONER SACKVILLE: Thank you.
MS EASTMAN: Can I just finish in relation to the cohort of people with autism. In terms of the research and the data, it’s fair to say that the data is limited in Australia. So it’s not so much a lack of the wish to undertake the research but the availability of the data in which the research can be directed. Is that a fair understanding?
PROF TROLLOR: That’s right.
MS EASTMAN: And looking at paragraph 37, you have said, in that context, you’ve looked abroad to the United States. And so a study in the US published in 2010 reported a 94 per cent rate of comorbid health conditions among autistic children compared to 17 per cent without autism. That is quite an alarming statistic, isn’t it?
PROF TROLLOR: Yes. So, essentially, it’s saying that people on the autism spectrum, particularly younger people, experience multiple health conditions.
MS EASTMAN: So if this is appearing in terms of children, and I assume that includes children and young people up to 18 ‑ ‑ ‑
PROF TROLLOR: Mmm.
MS EASTMAN: ‑ ‑ ‑ then these are going to have a very significant impact on the delivery of health services into the future.
PROF TROLLOR: That’s right. The trajectory of poor health starts in the early years.
MS EASTMAN: If we’re looking at statistics like that, can we assume that the – if there was the data available and the research undertaken in Australia, that we would probably discover similar sorts of statistical results?
PROF TROLLOR: Yes. It’s likely the case.
MS EASTMAN: And does that suggest the importance of having longitudinal studies, to be able to track these issues of rates of comorbid health conditions over a long period of time?
PROF TROLLOR: It does.
MS EASTMAN: Commissioners, you might have noticed that in Professor Trollor’s statement there’s a large number of endnotes which are all set out in detail. We have not reproduced every one of the articles and research papers for the purpose of the evidence of this hearing. But there is a large number of the research papers that have been included in our part D of the tender bundle. And I wasn’t proposing to tender each and every one of the research papers, but if there are particular papers that the Royal Commissioners would like to be included we can attend to that. And I can take you in due course to some particular papers as they appear in part D.
COMMISSIONER SACKVILLE: Yes. Thank you. Looking at paragraph 37, footnote 32, which – I quite like footnotes.
MS EASTMAN: I think these ones are end notes.
COMMISSIONER SACKVILLE: I prefer to regard them as footnotes, even though they’re at the end. The citation is to the prevalence of obesity in children with autism. Is the statement in paragraph 37 about comorbidity limited to obesity or is it more general?
PROF TROLLOR: I would have to check the reference.
COMMISSIONER SACKVILLE: Okay.
MS EASTMAN: Can I turn to the next area, which was psychiatric comorbidities. And this is an area where you have particular expertise; is that right? It’s part of your clinical work.
PROF TROLLOR: Yes. That’s right.
MS EASTMAN: So you say that people with intellectual disability experience very high rates of mental health conditions and they’re well in excess of the rates experienced by the general population, and best estimates for common disorders, such as schizophrenia, affective and anxiety disorder, dementia, that the prevalence in people with intellectual disability for those common conditions would be two to three times higher than the general population. And I think this is a reference, then, to aspects of your research. So what consequences flow when we’re talking about a psychiatric comorbidity, both in terms of diagnosis, timing of diagnosis, and then treatment?
PROF TROLLOR: The very high rates of mental – ill health in people with intellectual disability have profound implications for quality of life and for health trajectory. And some of our data on deaths shows that having a mental illness is one of the key predictors of death in both people with intellectual disability and, separately, in people on the autism spectrum. For this group, mental illness is brought forward by a number of years. And there’s some good data from Western Australia that suggests that, particularly for disorders such as schizophrenia that have an earlier onset.
MS EASTMAN: Well, given those findings, why is it that people with intellectual disability are routinely excluded from population health surveys? And the available data in Australia indicates that more than half of all people with intellectual disability have a psychiatric or mental illness. So this is something that you referred to in paragraph 40. So given the findings, why are they routinely excluded from the population health surveys? Do you know?
PROF TROLLOR: Essentially, it is related to the logistics of including people with intellectual disability in these kind of national surveys.
MS EASTMAN: What’s logistics code for?
PROF TROLLOR: Practicalities and cost.
MS EASTMAN: So just actually having the mechanics of collecting the data?
PROF TROLLOR: Correct.
MS EASTMAN: Is the absence of people with intellectual disability being included in those routine health surveys a matter of concern?
PROF TROLLOR: It is. In particular, it makes a data asset which is able to tell us about the issue a very important one.
MS EASTMAN: All right. Then, in terms of people on the autism spectrum, you say in your statement there are also very high rates of mental health issues arising for that population, including depression and anxiety.
PROF TROLLOR: That’s correct.
MS EASTMAN: And while most of the research is focused on children and adolescents, it’s the case, isn’t it, that, of the data that is available, that there are also similar concerns in relation to adults, but that data has mostly been examined at an international level, rather than data available in Australia; is that right?
PROF TROLLOR: That’s right, though we do have some more recent information from Australia that may be relevant.
MS EASTMAN: Okay. Commissioners, I’m now going to turn to a particular sensitive topic. And yesterday you might recall that I put up on the screen some telephone numbers for support services. And we’re about to talk about issues concerning high rates of suicide ideation. So it’s perhaps appropriate before I go into this to provide those telephone numbers again, and also just to give a warning that we’re about to address this very difficult topic, and if anybody feels that they would like to switch off for a while or leave the room, they’re very welcome to do so. So, Professor Trollor, one of the matters that has caused you particular concern is the very high rates of suicide ideation experienced by children, adolescents and adults who present on the autism spectrum; is that right?
PROF TROLLOR: That’s right.
MS EASTMAN: And, again, this is an area where the data related to suicide attempts is very limited.
PROF TROLLOR: That’s right.
MS EASTMAN: And to the extent that there is any reliable studies, you look to the US again for a study done in 2015 that compared the health of autistic adults with a non-autistic control group and found a five-fold risk of suicide attempts in the autistic group.
PROF TROLLOR: Yes.
MS EASTMAN: Again, without being alarmist, that is a rather alarming figure, is it not?
PROF TROLLOR: It’s very high.
MS EASTMAN: And, in terms of the findings from that particular study, was there anything to indicate an area where there was a need for immediate attention to try to address such a very high rate of suicide ideation? Do you remember that?
PROF TROLLOR: Well, clearly, there’s a very urgent need to address most people experiencing suicidal ideation. And, unfortunately, this is something for which help is difficult to access for this group, yes.
MS EASTMAN: If we, again, assume that the results in the US are likely to be indicative of the experience in Australia, what does this mean in terms of paediatric care for young people with autism?
PROF TROLLOR: It means that we must be vigilant, particularly as people on the autism spectrum are entering their teenage years, of the increased risk of mental ill health and of experiencing suicidal ideation.
MS EASTMAN: Are there specialist services available in Australia to address this particular cohort?
PROF TROLLOR: Within mainstream, in fact, the needs of people on the autism spectrum experiencing suicidal ideation are really not particularly well met. An example would be, say, our national suicide prevention strategy, which, although a very important piece of policy translated into action by Commonwealth and State Governments, the needs of this group are not mentioned.
MS EASTMAN: They’re not mentioned?
PROF TROLLOR: Not in the strategy itself.
MS EASTMAN: Not at all?
PROF TROLLOR: No.
MS EASTMAN: Why not? Do you know? Sorry. I’m not holding you responsible for what might be a policy, but this might be something that we need to explore in the course of the Royal Commission’s work.
PROF TROLLOR: I feel it’s largely lack of awareness of the issue. And I think it needs to be addressed. Yes.
MS EASTMAN: Would it be fair to say that an issue of this nature and these types of findings extend beyond the health system, but also to any area where we might find children in a school setting or otherwise, for example?
PROF TROLLOR: Yes, that’s fair.
MS EASTMAN: And, again, if this is outside your area, please let me know, but it might be a question, if I ask you and you can’t answer, others will be on notice of. And that is that, as far as you are aware – again, coming back to the question of the interconnection and the integration of disability services and health services – what, if any, is there in the education system in Australia that would support teachers, teaching staff to be able to be aware of these issues if and when they arose in an education setting, so when the child is outside the home?
PROF TROLLOR: My knowledge of the education sector is limited, but our data linkage work contains education department data, and I’ve had lots of interactions with education departments about it and about the health needs of people on the autism spectrum, which have been very well received. By and large, progressive education departments, I think, go to great lengths to understand the needs of the children they’re supporting and are very aware of this issue at the coalface. Certainly, you ask any school counsellor, you will find that they see a high number of children with autism who are experiencing mental health problems, including suicidal ideation.
MS EASTMAN: Commissioners, I’ve asked that question now, because, as you are aware, part of the work of the Royal Commission is also to look at the area of education and the welfare of young people in that setting. And this might be an area where the Royal Commission needs to make some further inquiries.
COMMISSIONER SACKVILLE: Yes. Thank you.
MS EASTMAN: The purpose of this hearing is health. And I will focus Professor Trollor on health, but I thought it was appropriate to ask that question now.
COMMISSIONER SACKVILLE: Thank you. Professor Trollor, I notice in footnote 47 it seems to be a study in which you participated on this very issue. Is that right? If so, what does that study tell us?
PROF TROLLOR: That’s right, Commissioner. The study refers to a joint collaborative effort, between Professor Amanda Richdale’s group in La Trobe and ours at the University of New South Wales, in which when we combined our data from people with autism aged 15 and upward we found that in the last two weeks about 36 per cent of all individuals in the combined studies had experienced suicidal ideation.
COMMISSIONER SACKVILLE: In two weeks?
PROF TROLLOR: Within the last two weeks. And 50 per cent of them had markers of clinically significant depression within the last two weeks.
COMMISSIONER SACKVILLE: That seems like a very striking set of findings.
PROF TROLLOR: It’s very alarming. Yes.
COMMISSIONER SACKVILLE: Thank you.
MS EASTMAN: Commissioners, I’m going to move from this topic ‑ ‑ ‑
COMMISSIONER SACKVILLE: Yes.
MS EASTMAN: ‑ ‑ ‑ and we’re going to move to the area of physical comorbidities. So, Professor Trollor, you deal with this starting at paragraph 45 of your statement.
COMMISSIONER ATKINSON: May I interrupt. The exchange between you and the Chair does suggest that an incremental approach to dealing with this problem would be vastly inadequate.
PROF TROLLOR: Thank you, Commissioner. I would agree, yes.
COMMISSIONER ATKINSON: Thanks.
MS EASTMAN: Dealing with the physical comorbidities, you say that people with intellectual disability and autistic people experience higher rates of a range of physical health comorbidities. And your statement then deals with a number of particular common instances; is that right?
PROF TROLLOR: Yes.
MS EASTMAN: So, first of all, we deal with sensory abnormalities. And this starts with your statement at paragraph 46. And you say in paragraph 47:
Approximately 50 to 60 per cent of people with intellectual disability have a hearing impairment and 40 per cent experiencing vision problems.
But you say overall that, while the Australian data is lacking, a number of sensory conditions have been described in autistic populations internationally. And that includes hyper and hypo sensitivity to sensory stimuli, visual processing differences and an increased prevalence of – and can you give me that word so I pronounce it correctly.
PROF TROLLOR: Strabismus.
MS EASTMAN: Thank you. A squint. And various other matters affecting people in terms of hearing; is that right?
PROF TROLLOR: Yes.
MS EASTMAN: So, in terms of the Australian data, again, why is it that we’re lacking this data in terms of the autistic populations in Australia?
PROF TROLLOR: My sense is that in the research community the needs of people with autism and people with intellectual disability have been under-represented. And it is, I think, in part symptomatic of the divide between health and disability on the one hand. I think if you have health researchers who don’t see disability as a health issue, then you won’t attract researchers or attract funding to understand the health needs. It’s not to say there’s no research. There are, I’m sure, very – there’s excellent research being done, but it’s underdone relative to the health needs of both populations.
MS EASTMAN: So the hearing impairment, visual impairment and other impairments affect both quality of life, but also adaptive functioning; is that right?
PROF TROLLOR: They do, but they also affect the way in which someone can communicate their health needs, be understood, receive health information and may also impact the way in which they express their symptoms. For example, if you’re someone who responds differently to pain, you may not communicate pain in the same way or with the same gravity as someone who is very sensitive to pain stimuli.
MS EASTMAN: Okay. The next area that you identify is epilepsy. This is paragraph 51 and following. And so, again, paragraph 55, this is another area where you say the Australian data is lacking. And I’m sorry to sort of labour the point, but, as I said earlier, this seems to be a very significant feature of your statement, which is telling the Royal Commission, “Here is the best I can do with the data available, but it is lacking.” So, again, in terms of looking at epilepsy as a comorbidity, what do we need to do in Australia to ensure that we’re able to collect relevant data and then to undertake the research to better understand epilepsy as a comorbidity? And we had – we’ve had one witness to date where this has been a significant issue for her. But how do we remedy the lack of research in this area and the lack of data?
PROF TROLLOR: So, overall, I think we need a population health focus on the groups that we’re talking about, but we also need data that informs us of the population health needs. And so at the moment, as we’ve illustrated previously with the lack of linked data systems, this is a very difficult thing to achieve.
MS EASTMAN: Right. The next area is problematic feeding behaviours. And this covers a range of topics, from both dental care and nutrition; is that right?
PROF TROLLOR: Yes.
MS EASTMAN: And the Royal Commission will hear on Monday from some dentists who are going to assist us a little more in terms of the detail of that. So I’m not passing over it because it’s not important, but I want to make sure that we can cover everything in the time available.
The next area is respiratory and gastrointestinal diseases. And this is an area where there has been some research, but the research has also picked up a correlation between cause of death and respiratory gastrointestinal disease. And at paragraph 64 you talk about a report in New South Wales that looked at a cohort of people in New South Wales who were in the care of disability service providers. So these are disability service users. And the persons who were in the care of the relevant services who died between 2014 and 2017, that swallowing problems were reported for 62 per cent of people in that group for death.
PROF TROLLOR: That’s right.
MS EASTMAN: And so swallowing problems also including choking and – what can you tell us about ‑ ‑ ‑
PROF TROLLOR: Swallowing problems can relate to anything that may impact the ability to manipulate food in the mouth through to the mechanism of initiating swallowing, through to the motility of the oesophagus as the food travels down to the stomach. And particularly for people with cerebral palsy, but also other conditions, these feeding and swallowing problems are very highly prevalent. Their impact, of course, is that if you’re not supported to adequately manage your feeding with the appropriate diet, firstly, the appropriate assessment of the problem and appropriate modification of diet, positioning and timing of feeding, then you may be at higher risk of choking or aspirating the food, so that it goes back into the lungs. And these things can be feeding into a cycle of either ..... infections or acute risk that may lead to death.
MS EASTMAN: So this study was done in relation to people who were disability services users. Has there been any study, as far as you’re aware, to a broader population for people who might not live in the – in a group home, might live with their parents, might live independently? Do you know if there’s any research to make a comparison in relation to the risk of death from a swallowing issue?
PROF TROLLOR: I’m aware of international data on the rates of feeding and swallowing difficulties. I’m not aware of – and it may just be a gap in my knowledge, as I’m primarily focused on mental health. I’m not aware of the specific outcome you’re mentioning.
MS EASTMAN: Paragraph 69, you say there:
Higher vulnerability to gastrointestinal and respiratory issues among people with intellectual disability and autistic cohorts are an area for concern for which specific tailored health care responses should be developed to mitigate risk.
So, in that, is there any particular health care response that you’ve turned your mind to or are you talking more generally about the need for some careful and clear thinking in this area?
PROF TROLLOR: And connectivity between health and disability services such that we know who is doing what in relation to assessment of feeding and swallowing. It’s good management. And particularly monitoring when adherence to those appropriate adjustments are not followed through, because they have grave implications for the person.
MS EASTMAN: The next issue you identify are mobility restrictions. And you’ve set out in paragraph 70 through to 77 some issues about the impact of mobility. You say:
Australian data has highlighted that in populations with co-occurring disability and autism 52 per cent are reported to have profound or severe limitations in mobility.
And I assume that the consequences in terms of profound or severe limitation can then, again, have an impact in terms of adaptive functioning, but also capacity to access health services without the assistance of someone; is that right?
PROF TROLLOR: That’s correct.
MS EASTMAN: Then there’s a major issue, which I think is the subject of some of your work now, and that’s frailty and premature ageing in the cohort of people with autism, but also people with intellectual disability; is that right?
PROF TROLLOR: Yes, that’s correct.
MS EASTMAN: And you deal with this starting at paragraph 78 of the statement. But the research indicates that the notion of a younger onset of frailty for people with intellectual disability is a matter of concern. And you say:
With this group, they’re having similar rates of fragility at age 50 compared to the general population at age 75.
And is it right to understand that, with what might be a younger or earlier onset in terms of frailty, that this then has a cascading effect on all other comorbidities leading to, for some people, a much earlier entry into the aged care system?
PROF TROLLOR: That’s correct. But frailty itself starts much earlier. And so, for example, if you are not able to participate in healthy living and you’re not receiving a message of preventative health and able to participate in monitoring health conditions, you are predisposed early to factors that may later result in that premature frailty.
MS EASTMAN: And at paragraph 83 you say, again, this is an area where the Australian data is scarce and, again, you’ve had to rely on international data. What does the international data and international research tell us about the issues for Australia? And I’m mindful here Kylie Scott gave some evidence at the commencement of the hearing, and she listed a number of areas that she thought doctors needed to know about. And I think one of the last of the important items that she emphasised that was a matter of importance to her was dementia and Alzheimer’s. So someone like Kylie Scott saying to the Royal Commission this is a problem based on her work and her advocacy, how do you think that’s going to mirror in the broader population?
PROF TROLLOR: So the risk of dementia is increased several fold in people with intellectual disability. And while some of these risks are understood, for example, in people with Down syndrome, the extra chromosome 21 which codes for a protein which later deposits in the brain and contributes to the cascade to Alzheimer’s disease, the risk is not really well understood with non-Down syndrome-related intellectual disability. It may in fact relate to things like poor educational opportunities, lower mental stimulation through the lifespan, lower engagement in healthy living and healthy diet and exercise programs which might increase the population risk.
MS EASTMAN: Right. And I think you conclude at paragraph 91 that there’s a need for specialised training for health care staff and specific health care policies that address this particular issue; is that right?
PROF TROLLOR: That’s right. At the moment, there are no specialised services for assessment or management of dementia in people with intellectual disability that I’m aware of in Australia.
COMMISSIONER SACKVILLE: Professor Trollor, can I raise some general issues which seem to emerge from your analysis. Everybody in this room, everybody watching, will have had contact with the Australian health system. Everybody’s perceptions will be influenced by those contacts, which will vary, obviously, from person to person. But one of the characteristics of the Australian system, perhaps of all systems, is fragmentation of the health system. There are specialties, there are gateways to specialties through general practitioners. And we heard from one of the witnesses yesterday of her experience that some gastroenterologist would be concerned with gastroenterological problems. And then, if there are other problems, you have to go to somebody else. Specialties emerge over time. Is there a specialty within the medical profession for disability, cognitive disability, in particular? And, if not, should there be? And, if so, how do we get there?
PROF TROLLOR: We’re very fortunate that we have many excellent developmental paediatricians who focus in this area for younger people. Also, when someone has a mental health issue and they’re a younger age child ..... psychiatrists are often involved. Yet, people still struggle with access and with coordination of care, even in the younger years. When people transition to adult services, the fragmentation is felt very starkly, because people transition to a system where there is no central coordination of health-related supports. And the person must, therefore, access their individual providers for their many comorbid conditions separately in a disconnected way, unless someone has a very, very assertive general practitioner managing – helping them manage those conditions. So it’s extremely difficult, particularly after that transition to adult services.
COMMISSIONER SACKVILLE: That states the problem, but how do we solve it?
PROF TROLLOR: I think it’s a really difficult problem to solve unless ‑ ‑ ‑
COMMISSIONER SACKVILLE: Which is why I’m asking you.
PROF TROLLOR: Unless each of those professional groups are equipped with a knowledge and the right skills and approaches to serve those needs and unless our disability professionals are equipped with the funding and capacity to help that person coordinate their access to care. So I think you need some things done in one sector and some things done in another sector that together might actually help a better – a more coordinated approach.
COMMISSIONER SACKVILLE: This is the general problem with medicine, isn’t it? The fact that medicine works, if I may generalise in a way that lawyers are apt to – medicine works extraordinarily well for well-established categories of illness, disease, so on. But where there are complex problems, this difficulty arises all across the board, that is, if there is a complex health problem involving different disciplines, for anybody trying to navigate the system, it’s extraordinarily difficult, generally, because the different disciplines don’t coordinate or interact, partly because of the funding arrangements, partly because of specialisation. Is that a fair assessment?
PROF TROLLOR: Yes, Commissioner. Professor Stephen Leeder this morning mentioned some initiatives in chronic and complex care. These initiatives could be prioritised for people such as individuals with intellectual disability and other complex developmental disabilities. But unless they’re specifically and proactively included in those kind of initiatives, we won’t get them there, because they’re not a group that lobbies or is able to lobby hard for its own needs, by and large.
COMMISSIONER SACKVILLE: Okay. Sorry to have interrupted so comprehensively.
MS EASTMAN: I want to now turn to the intersection of disability and health care needs. So this is addressed at paragraph 96 and following in your statement. Can I try to summarise it. And there’s a lot of material here. Is this relates to the issues around communication, recognising and acknowledging different communication styles and different communication needs and the importance of the health system being able to communicate effectively. So this is in all forms of communication, down from even something as simple as a particular written brochure, to the one on one interaction that might occur in a health care setting. Is that a very broad summary of what’s in there?
PROF TROLLOR: Yes. That’s right.
MS EASTMAN: But I think what I wanted to ask you about is the communication and this concept of diagnostic overshadowing. So you use that expression in paragraph 109 of your statement. And in my opening remarks for the Royal Commission I hope I’ve described a diagnostic overshadowing in terms of, perhaps, missing symptoms and assuming that particular physical or psychiatric symptoms might really be a consequence of an intellectual disability, rather than being a separate comorbidity. But how would you describe diagnostic overshadowing in terms of it operating in a practical way. We got a sense of that from some of the witnesses over the past few days, but I think it will be helpful from your perspective to say how does this actually work, again, if I can use that expression at the coalface?
PROF TROLLOR: So, put simply, diagnostic overshadowing is a misattribution of symptoms of physical or mental illness to the disability, rather than to the problem that’s caused them. At the coalface, this is a major problem for people accessing services, when frontline health services hear from a person with disability, often they may see or hear about the disability first and may prioritise that issue, rather than listening carefully to the range of symptoms someone may present with, bearing in mind if you are a person who is experiencing communication difficulties, you may experience and represent your physical health symptoms through changes in your behaviour.
And so it’s a primary issue that is being brought to the attention of a health provider is one of a sudden change in behaviour. Whilst that raises alarm bells of experts, because they know that there must be a cause for a sudden change in behaviour, and often that may be a medical or psychiatric issue, it’s misattributed to the disability, because people with disabilities may have behaviours of concern. So at the coalface someone may, therefore, be triaged as not having a health issue and be immediately diverted back to a disability provider around support for behaviour.
MS EASTMAN: So it sounds like there’s a risk, unless we address diagnostic overshadowing, of people falling between gaps, and then that misdiagnosis then having an ongoing effect in terms of both comorbidities, but the development of significant chronic conditions; would that be right?
PROF TROLLOR: Yes, that’s correct. So unless medical practitioners are aware of the systematised way of assessing people with intellectual disability or autistic people as they come forward with a concern, including a hierarchical approach that prioritises health issues and things like pain, through to psychiatric issues, through to careful health screening, before concluding that the change is related to the disability itself, we won’t get very far. So we do need some skilling quite rapidly.
MS EASTMAN: The next area that you wanted to talk about was the very specific highly vulnerable populations. And it’s right, isn’t it, that you’ve currently done some fairly in depth research in looking at populations within the criminal justice system. And you’re about to publish some data and some research in that area; is that right?
PROF TROLLOR: Yes, conducted by one of my PhD students.
MS EASTMAN: And it is – the summary is in paragraph 124. This is an area which the Royal Commission will look at shortly when we hold a public hearing in relation to the justice system. But, in terms of the relationship between intellectual disability health and an environment such as a custodial environment, what were the findings in terms of the impact for people with intellectual disability?
PROF TROLLOR: The key findings from the research were that people with intellectual disability are over-represented in New South Wales custodial settings of an order of about four times the risk of incarceration compared to the general population, and that of those with intellectual disability in New South Wales prisons, over 50 per cent of them are from Aboriginal or Torres Strait Islander background.
As well, we looked at whether types of services after leaving custody had an impact on return to custody, because people with intellectual disability are known to return to custody at very high rates, partly because they’re not adequately supported when they leave. We found that the provision of disability supports significantly reduced the likelihood of people coming back to custody, but that, overall, a minority of people with intellectual disability received disability supports when they left.
MS EASTMAN: Are you aware of any research related to this recent work that you’ve done in any other university settings or any other context in Australia?
PROF TROLLOR: Yes. There’s also good research in this area conducted by a number of colleagues at UNSW, Professor Ilene Baldry and Leanne Douse, of which you may be aware.
MS EASTMAN: Thank you. And, at 126, you also add to the areas of specific vulnerability poverty. And, in terms of the impact of poverty and low socioeconomic cohorts, then there’s a compounding of the issues; is that right?
PROF TROLLOR: That’s right. It may be that a substantial proportion of the health disadvantage experienced by people with intellectual disability, possibly up to 30 per cent, may be explained by socioeconomic factors.
MS EASTMAN: At paragraphs 127 to 129, you make some conclusions about this first area that we’ve examined, which is health care services and needs. What would you like to say to the Royal Commission in relation to some of the conclusions that you’ve documented there?
PROF TROLLOR: So my sense is that the combination of psychiatric and physical health, comorbidities and difficulties with adaptive functioning and those contextual stressors we talked about, such as poverty and contact with the criminal justice system, contribute to quite complex health care needs and our system is not one that is equipped to deal with that level of complexity at present. My sense is, in order to provide that adequate response to people with intellectual disability and autism, that, overall, we need significant adaptations to our standard practice, we need innovation across a range of areas, including in education and in health models – as health service models. And we certainly need better cross-sector collaboration between the disability, education, health and other relevant settings in which people with disability are supported.
MS EASTMAN: So next area that you move to is health care services and the area of substantial unmet need. And you cover a number of areas in this part of your statement starting at paragraph 130. And one of the areas is poor access to preventative health care initiatives. And so you address this at paragraph 131 and following. In terms of just summarising the position in relation to access to preventative health care, is the reason why there is deficiency in this area getting into a preventative health care system in the first place? Is it diagnostic overshadowing or is it something else?
PROF TROLLOR: I think it’s multiple different factors, essentially. We know that people with intellectual disability and autistic people experience very high rates of risk factors for later compounding effects on health, for example, high rates of obesity, cholesterol, high blood pressure, lower participation in exercise programs, keep-fit programs. And so the needs in the preventative health domain are documented as very high.
But when a person with many needs – and we’ve seen in Professor Beange’s seminal study on average five and a-half conditions – come to the preventative health care settings, often primary care, general practitioners may struggle with the current model of service delivery and funding available for GPs to provide services, to address all of the relevant issues. It might just be that the first issue that’s presenting itself, the need to fill in a form, for example, is executed at that visit.
Our own research in primary health care in collaboration with the University of Sydney in and the BEACH program showed that most GPs were overwhelmed with paperwork needs and some of them with mental health needs, and they rarely got to the preventative health needs of that individual in their practice. And this was from nationally-representative general practice data from annualised surveys of GPs, documenting their consecutive consultations. And we were able to look at what was happening with both people with autism and people with intellectual disability. We saw lower rates of prescribing of preventative health medicines, such as medicines for diabetes, high blood pressure and cholesterol, even though we know the risk factors are represented to a greater extent in the groups compared with the general population.
MS EASTMAN: Some of these things are really basic things, aren’t they? Basic screening, vaccination, the sorts of things that really should just be a matter of course, rather than something that would require somebody to specifically turn their mind to to think about.
PROF TROLLOR: That’s right. And it’s not the fault of the general practitioner. Many are striving to do a very good job and do very good jobs, but I think the constraints of working within a system that doesn’t support the level of complexity presented is a real one.
MS EASTMAN: All right. The Chair asked you ‑ ‑ ‑
COMMISSIONER GALBALLY: Could I just ask a question about the degree to which that’s also the disability overlay, that it’s just not considered necessary, you know, almost like a discrimination?
PROF TROLLOR: I think to – Commissioner, I think to get to the bottom of that you would need to pair the survey-based work with qualitative research that tries to understand on what basis the general practitioner may be making a decision and on the dynamics between the person with disability and the professional. It’s a very difficult issue, I think, to understand fully.
COMMISSIONER GALBALLY: And is that research being done in other countries?
PROF TROLLOR: I’m not aware of research in that area. I’m not aware of a lot of things. So it could be just a knowledge gap.
MS EASTMAN: If this is not the right time to ask you this question, let me know. But I was interested, also, in private health insurance for people with intellectual disability, people with cognitive disability generally, because we’re talking about preventative health and we talk about all of the bells and whistles that often come with holding private health insurance that often are quite attractive to encouraging people to take up private health insurance. How do people with cognitive disability fare in the private health insurance market? And does that have any bearing on issues in relation to preventative health? And if it’s not the right time to ask you the question, let me know.
PROF TROLLOR: I think – thank you, Senior Counsel. I think it would be a very interesting thing to study, the uptake of private health care for these groups. I’m not aware of research that exposes that. I do know that in our own data linkage we have people who have accessed both private and public hospitals, but I – although I can’t quote the statistic, I know we’ve previously looked, and the use of private hospitalisations for people with intellectual disability are substantially lower than you would expect on a prevalence basis.
MS EASTMAN: So much – probably a much higher reliance on the public system than anything in the private system; is that right?
PROF TROLLOR: Yes, that’s right.
MS EASTMAN: Then, coming back to your statement, the Chair has asked you a little earlier and you had a conversation about some of your findings in relation to deaths and death rates and the statistics. Some of that you set out in paragraph 137, but you talk also about the work that you’ve done with the NDIS Quality and Safeguards Commission called a Scoping Review. Is there anything you want to tell the Royal Commission about the nature of the Scoping Review and your involvement in that?
PROF TROLLOR: The Scoping Review was undertaken by Dr Carmela Salomon and myself funded by the NDIS Quality and Safeguards Commission and on their behalf, to help understand data on deaths in people with intellectual disability and other disabilities and to help provide a summary and a series of recommendations that the Commission could examine as it starts to develop its monitoring system.
MS EASTMAN: Is that part of ongoing work that you’re doing or have you completed the work that you were asked to do in relation to the scoping review?
PROF TROLLOR: A second part of that work was to work with AIHW, the Australian Institute of Health and Welfare, to help them construct a data linkage system that may assist in reporting for the NDIS Quality and Safeguards Commissioner. That work has been ongoing and will probably finish in the next month or two.
MS EASTMAN: All right. And I think we’ve drawn your attention to part of a statement that has been provided to the Commission by Mr Head from the Quality and Safeguards Commission. He’s the Commissioner. And he makes reference in his statement, starting at paragraph 234 and following, to your involvement in some of that work. And I don’t know whether you’ve got a copy with you.
PROF TROLLOR: Yes, I do.
MS EASTMAN: Was there anything, looking at what he has said in that part of the statement, that you wanted to comment on or to address in terms of whether it’s covering everything that you’ve been involved with?
PROF TROLLOR: Yes. We did provide a detailed set of recommendations to the NDIS Quality and Safeguards Commission and a series of shorter papers, including the recommendation summary which is now published. And I would like to highlight some of the restrictions and limitations, I think, that are challenges for the NDIS Quality and Safeguards Commission as it goes forward in monitoring deaths in people with disabilities.
MS EASTMAN: In summary, what are they?
PROF TROLLOR: So I think one of the – and I’m just struggling to see where I’ve addressed this in my statement. The key elements, essentially, are that, as part of the recommendation section, I think, the ‑ ‑ ‑
MS EASTMAN: So is this – sorry to jump in. Is this around paragraph 293 of the statement at page 46?
PROF TROLLOR: I will just get to that. Yes. It’s – perhaps 293 onward to 297.
MS EASTMAN: All right. If it’s convenient, we can deal with that now.
PROF TROLLOR: Yes.
MS EASTMAN: So this is the issue about the type of data that the Quality and Safeguards Commission collects and limitations in terms of the matters that might be reportable, including reportable deaths; is that right?
PROF TROLLOR: That’s right, as they’re defined within the NDIS Scheme Act.
MS EASTMAN: All right. We have a copy of that definition, which Mr Head has very helpfully included in his statement. I don’t know if it’s convenient to put that up now. So this is paragraph 72 of Mr Head’s statement. So this is an extract from the legislation, and, in particular, section 73Z subsection (4). And it’s convenient in terms of setting out what has to be reported. And so this is the section that you’re referring to in paragraph 294 of your statement. So if we look through that, the reportable incident includes:
The death of a person with disability; serious injury... abuse or neglect –
And then a range of other matters. So when it comes to deaths of a person with disability that are reported, there’s a qualification, isn’t there, in relation to that is a death of somebody who is in or receiving the support of a registered NDIS provider. So what does that mean by limiting the reporting to registered NDIS providers? Does that have any implications?
PROF TROLLOR: Simply put, there are providers who are not registered, but there are also people with disability who are not receiving services under the NDIS whose deaths will not be part of the reporting.
MS EASTMAN: Is this a change from any reporting obligations that existed prior to the Quality and Safeguards Commission?
PROF TROLLOR: Not as far as I’m aware. I think the reporting requirements have been very similar in the New South Wales Ombudsman and other jurisdictional reports.
MS EASTMAN: I think – and I will have to turn this paragraph up. I’m sorry. I think you mentioned somewhere, maybe earlier in your statement – yes. If we can go back to paragraph 201 through to 204 – that in terms of reporting and then collecting and collating data, that there was a process conducted by the New South Wales Ombudsman, but then in 202 you say:
There are no published reports or systemic mortality tracking procedures in place for populations with disabilities in Tasmania, Western Australia, the Northern Territory or South Australia.
PROF TROLLOR: To my knowledge, that’s correct.
MS EASTMAN: And in Victoria, the Disability Services Commissioner recently released a report, a first review of deaths of people receiving disability services in Victoria. And the Royal Commissioners may recall that Mr Arthur Rogers, the Commissioner in Victoria, provided reference to that report and a copy of that report in the hearing held in Melbourne last year. So I’m just trying to get an understanding that across the country, it’s the case, isn’t it, that – with the NDIS Quality and Safeguards Commission, that we’re now starting to have a reporting system into a national body?
PROF TROLLOR: Yes.
MS EASTMAN: In terms of what’s reported, there’s a limitation because they have to be NDIS-registered providers. If we step back from the national system and looked at what was available on a state-by-state and territory basis, are we right in understanding that in New South Wales and, more recently, in Victoria there’s the collection of some data? I think we know from a report that there’s also some data for Queensland, but will we find anything for Tasmania, Western Australia, the Northern Territory or South Australia?
PROF TROLLOR: Not to my knowledge, no.
MS EASTMAN: All right. Sorry, that was a big jump around in your statement. But coming back to summarise the work that you’ve done at looking at deaths, and, importantly, preventable deaths, what’s the key message for the Royal Commission to understand, either in terms of the data collection and the analysis and importance of data, but also what can be done in relation to dealing with preventable death?
PROF TROLLOR: It would be helpful for me just to mention that, overall, the profile of causes of death of people with intellectual disability are very similar to the profile of causes in the general population and that, indeed, if you stratify them by the most common through to least, they share the top 10 most common broad causes of death, both people with intellectual disability and the general population. So that tells us, largely, that people are dying from similar things to most Australians, with some exceptions. But when we look at the proportion of potentially avoidable deaths, that’s where we see a very big gap, being 38 per cent, versus 17 per cent of that same time period, assuming New South Wales data are reflective of what’s happening across the country.
And if we extrapolate from the New South Wales data to whole of population in Australia, I estimate that between the ages of 20 and upward, about 400 Australians with intellectual disability will die annually from a potentially avoidable death. So I know the Commissioners have heard quite significant stories and understood them and their impact on people with disability and their families. Of every one person who has a tragic outcome of death that the Commission will hear, there are many more nationally. And I think that is a huge issue that speaks to the lack of equipping of people with disability with the knowledge they need to access health services, the lack of vision in policy and the lack of vision in health service provision for people with disability that, ultimately, leads to tragic outcomes like that.
COMMISSIONER SACKVILLE: But the – also, the logical outcome of your evidence, at least as I follow it, is that independently of premature death, the consequences would include very much diminished quality of life for people with cognitive disability. How one measures that may be a very difficult question, but if there are illnesses/conditions that should have been diagnosed, should have been treated but are not, presumably that leads to such conditions such as reduced mobility, chronic pain and so forth.
PROF TROLLOR: That’s right. And frailty statistics do suggest that.
COMMISSIONER BENNETT: Professor Trollor, you’ve talked about a number of things about proper diagnosis. You’ve talked about lack of access to preventative services or – that we would normally expect – most of us would expect. Has there been any work done on rehabilitation? So if a person with a disability has a fall or a stroke, do they have the same access or is that another contributing factor of lack of treatment? I think it goes to Commissioner Galbally’s question, is there a cultural practice of denying people with disability those services that you would look at someone else and provide it?
PROF TROLLOR: Unfortunately, I don’t have data to provide which would evidence that suggestion, but I do know of people with disability who haven’t received the access to appropriate rehabilitation, even when there’s a very clear clinical pathway that involves intensive rehabilitation as part of its core management.
COMMISSIONER BENNETT: The second question I have relates to the data and the problems throughout your whole evidence you’ve shown and pointed to, and Ms Eastman has drawn out; gaps in the data are inconsistent in the way it’s collected, lack of Australian data, the lack of data in settings. How can, without good data – without good baseline data, how do you then measure the success of interventions, to be able to track them and see how – that they are the right interventions or could be modified and that they become what you would call evidence-based policy?
PROF TROLLOR: In short, you can’t. And so over a period of time – and a long time, longer than I would desire, we have assembled some data linkage infrastructure that helps us understand the issue in New South Wales. An illustration of how difficult that is – so I was fortunate to receive an NHMRC grant to launch a very significant interrogation of data related to health outcomes, whole of health outcomes, including participation in things like cancer-screening initiatives, preventative health care programs and outcomes, and match them against the non-clinical care pathways which involved a complex linkage to Commonwealth data, PDS, MBS data and our state system.
Now, having initiated the data-linkage process, or the research two and a half years ago, and having had all the approvals, I’ve actually yet to receive the data two and a half years later. And the project is only a five-year project. So there’s an incredible logistic difficulty in assembling these datasets for research and preparing them for analysis, let alone producing the desired variables that you’ve mentioned in terms of participation in different parts of the health services system.
COMMISSIONER BENNETT: So how does government then know, if they do an intervention or a different approach or perhaps they’re innovative – how can they tell whether it’s successful over a longitudinal – are they not able to?
PROF TROLLOR: I think – I’m not a health services evaluator, but, overall, I see very few proper evaluations of innovation in health services, and it’s something that I know – for example, with the initiation of some new health services for people with intellectual disability in New South Wales – has being treated quite seriously by New South Wales Health as they design the evaluation of those health services. I think we do need to be careful that the – as far as possible, that the models we adopt are evidence-based or, if not, that they represent the views and needs of people with intellectual disability combined with those of experts. But, actually, it’s really hard to quickly change the health care system in a way that we know will definitely produce an improved outcome. And we can think we’re doing the right thing, but we need to carefully fund and equip the valuation of those initiatives in order to make sure they do the job that is being asked of them.
COMMISSIONER GALBALLY: Stop me if this is – because I’m ‑ ‑ ‑
MS EASTMAN: I’m not stopping you at all, Commissioners.
COMMISSIONER GALBALLY: ‑ ‑ ‑ introducing new – but I just wanted to come to the issue of hospitalisation and the importance of people being able to take a support worker who’s familiar, you know, with their communication and needs into hospital. And the very patchy practice, and the sort of ball – you know, throwing the ball in the air as to who pays and – wondered if you had information on that topic, because it’s not addressed specifically.
PROF TROLLOR: It’s not. Just through experience, over time, it’s been an area fraught with difficulty, both the inclusion of family and family carers within the acute care episode, a hospitalisation episode, and of valuing and listening to the opinions of those carers, where they need to express them on behalf ‑ ‑ ‑
COMMISSIONER GALBALLY: Yes.
PROF TROLLOR: ‑ ‑ ‑ of that person, as well as the funding for formal support and the understanding of the needs of the person and the transmission of information of relevance from the disability care provider to the health sector. So there have been a number of challenges. It used to be easier, in some respects, where we had a disability service provider of last resort in the State Government systems to negotiate at a level with disability service providers, particularly those that were government-funded around provision of supports. And often you would see a – supports being negotiated and is coming to some kind of arrangement. I think under the transition to NDIS, that became very difficult, because initially there was no support for those kind of health-related aspects. I think that’s slowly changing.
COMMISSIONER GALBALLY: Thank you.
COMMISSIONER SACKVILLE: You’ve mentioned, I think, earlier on, that your position is unique in Australia, the work you’re doing. How did it come to be established in New South Wales?
PROF TROLLOR: This was a very, I think, insightful initiative funded by then Ageing, Disability and Home Care, part of Family and Community Services of the New South Wales Government. And that organisation recognised a gap between health, particularly mental health, and the disability sector and thought that we needed to develop a response to that that involved equipping of a workforce and upskilling practitioners in the area and developing a bridge between disability and health. That initiative was put out to tender; UNSW won a tender bid, and I applied for the job. Whilst I wasn’t the first person to receive an offer of job, I was the second person, as the first person declined the offer, and ‑ ‑ ‑
COMMISSIONER SACKVILLE: We don’t need to go into that.
PROF TROLLOR: ‑ ‑ ‑ I took up the position. And it’s been one that has been recurrently funded by – in combination – partnership between New South Wales Health and Family and Community Services, and the funding extends until the middle of this year.
COMMISSIONER SACKVILLE: But then it runs out?
PROF TROLLOR: Yes. It does. I’ve had very positive signs from New South Wales Health about the value they see in such an initiative, and they’re very happy to continue their half – funding for the initiative.
COMMISSIONER SACKVILLE: That’s very promising. What about other states? Has there been any similar initiative in any other state?
PROF TROLLOR: Not in that – building that bridge between disability and mental health at that hospital and systems level. There have been other good initiatives, particularly in Queensland, that have focused mainly on primary care but also on mental health through the Queensland – formerly Queensland Centre for Intellectual and Developmental Disability Health. And the centre in Victoria, which was similarly primary-care focused but also had a mental health component. In those states, I think, where such specialised initiatives exist, you see, generally, more progressive movement. Particularly, there’s a spin-off, I think, of those initiatives, which mean that there’s more of a focus in health policy and in health services development in those states that have those resources.
COMMISSIONER SACKVILLE: It sounds like there should be something national that gives the equivalent of what you are undertaking. Is that something that you would support, you could see a benefit from?
PROF TROLLOR: Ideally, I think we need, essentially, a national body that acts as a clearing house of resources in this area that enables practitioners to be properly equipped to do a good job. I think that could be a virtual clearing house and could involve, also, the production of training materials that could be incorporated into curriculum for nursing and medical students that the people of the future who will be meeting – helping people with disability meet their health needs, as well as providing some consultation and input into policy and services development and service models. So I think there’s – there’s certainly scope. And I think one of the recommendations from a previous National Roundtable on intellectual disability and mental health that we had the good fortune of running several years ago with sector support at the highest level – suggested that as one of the solutions, particularly around the gap between mental health service provision for people with intellectual disability.
COMMISSIONER ATKINSON: It was suggested but not acted on?
PROF TROLLOR: I guess the question is whose responsibility is it to act. When you meet with a group of learned people with – across a number of sectors and you all agree on actions, there’s a lot of excitement and a lot of good will. And I think, by and large, what we find is that people go away and forget.
COMMISSIONER ATKINSON: So whose responsibility is it?
PROF TROLLOR: Well, I feel I bear some of the burden of that responsibility. And, you know, it’s something that you – you finish a project and you hope that it makes an impact and you hope people will take up responsibility for the various action points. And we, indeed, included some degree of illustration of who should be responsible for those different action points. But you have to move on to new projects and new funding initiatives and it’s very difficult to follow up with people and hold them accountable, as people change in their positions, move on from their positions and you lose that connection and their willingness to act on those recommendations.
COMMISSIONER ATKINSON: Professor Trollor, I’m not trying to blame you. Obviously there needs some structure to do that, not just an individual. So what’s the structure that’s needed to put that in place?
PROF TROLLOR: My sense is what we need at the very highest levels is a whole of government response that helps drive some of these good ideas. There’s plenty of ideas. There’s known solutions to the problems.
COMMISSIONER SACKVILLE: If there is a major national problem, I rather thought that was one of the reasons for having a national government. Perhaps I’m wrong.
MS EASTMAN: Commissioners ‑ ‑ ‑
COMMISSIONER GALBALLY: Can I just ‑ ‑ ‑
MS EASTMAN: Sorry.
COMMISSIONER GALBALLY: Just before we finish this, I just wanted to bring into the mix the advocacy from organisations like New South Wales Council for Intellectual Disability and other bodies and Inclusion Australia, because they’ve been absolutely vital, haven’t they, in getting these issues ‑ ‑ ‑
PROF TROLLOR: They have been. All the data and the research does is confirm the lived experience of people with disabilities, and it provides some ammunition for the excellent advocacy of bodies like New South Wales Council for Intellectual Disability. So I think research in – you know, my research is hoping to be translational, and it simply backs up what’s being spoken.
COMMISSIONER SACKVILLE: These are wonderful initiatives, but there is no reason in this country why they should be confined to New South Wales, is there?
PROF TROLLOR: No. I believe a national platform is required, yes.
MS EASTMAN: Commissioners, we’ve started to stray into some of the areas of recommendations, which is the next part of Professor Trollor’s ‑ ‑ ‑
COMMISSIONER SACKVILLE: I wouldn’t regard it as straying, Ms Eastman, but ‑ ‑ ‑
MS EASTMAN: ‑ ‑ ‑ report. I’ve got ‑ ‑ ‑
COMMISSIONER SACKVILLE: ‑ ‑ ‑ you carry on.
MS EASTMAN: ‑ ‑ ‑ one matter to finish, in terms of need. And then I wondered if it was convenient to adjourn for lunch. And I think Professor Trollor is able to stay with us for a little bit of time ‑ ‑ ‑
PROF TROLLOR: That’s correct.
MS EASTMAN: ‑ ‑ ‑ this afternoon. And when we resume, to look specifically at the recommendations and some of the suggestions made by Professor Trollor. Would that be a convenient course?
COMMISSIONER SACKVILLE: Yes. Shall we resume at 2?
MS EASTMAN: I just want to finish one aspect and then resume.
COMMISSIONER SACKVILLE: Right.
MS EASTMAN: So I want to ask you about the National Australian Coronial Information System, which you deal with at paragraph 199. And you say that there is no national system with an explicit code for disability status within that database. So I just wanted to explore with you in terms of the absence of having a code for disability status in the database, what the consequences might be. And just to put that in context, one issue that arose yesterday in the evidence was if a person with disability dies but the disability, particularly intellectual disability, is not part of the cause of death and the disability is still noted on the death certificate, that causes some people some significant distress because it’s suggesting all sorts of things in terms of identifying cause of death.
But if you are saying that there’s a need for some type of code to identify disability for the purpose of the operation of our coronial system, how do we make sure that we can identify disability as a status for the purpose of coronial investigation, as opposed to even at end of life and dignity at end of life on – your final thing is your death certificate – defines you by reference to disability but not your cause of death. Sorry again. That’s quite a long question. I’m trying to pick up some of the evidence that we heard yesterday and the fact that you’ve referred to this as a matter in the unmet need area of your statement.
PROF TROLLOR: Thank you. Certainly, I’m not an expert in the National Coronial Information System or how it codes, but, in my opinion, we do need to code disability-related codes – not in cause of death coding, which seems unreasonable, as illustrated yesterday – and I will come back to that, but we do need a way of identifying people if we’re going to understand what has happened to that individual and how that varies by whether or not the person has a disability. The difficulty is, I think, linking all of the information systems together to ensure we capture all people with disabilities of different types, because they’re represented variously – often enter into data systems because they’re receiving a specific service from that funding body.
We know from our own linkage that it was only when we put eight different datasets together that we came up with what we thought was a near population capture of people with intellectual disability receiving services of some sort. And that represented about 1.2 per cent of the New South Wales population. But if we had just relied on one of those datasets, the representation – we would have concluded very limited representation of people with intellectual disability in New South Wales. And I guess the National Australian Coronial Information System is one of those systems where we need to try and identify.
You highlight the indignity of the cause of disability being coded – sorry, disability being coded as a cause of death or a contributing cause of death, and this, for most situations, makes no sense and is very distressing for people. We saw an echo of this in the data we analysed. In fact, I manually recoded all of the causes of death, to ensure that we analysed it two ways, with the information given through the coronial system and by recoding so that the cause of death was not coded as the disability. And it was revealing of higher numbers of potentially avoidable deaths.
So the proportion of potentially avoidable deaths went up significantly and we discovered things that were previously hidden because they had been labelled as due to Down syndrome or another cause of disability. So we believe that’s an important step. I’m working with an international mortality group that is trying to progress an argument for recoding or a different way of coding these data, which are determined under international conventions. And it’s very hard to change a system that has been in use for many years. Where it becomes slightly difficult is, for example, where someone may say, well, the cause of death is intimately linked with that cause of disability.
But even then – and the illustration given by the WHO has been dementia in someone with Down syndrome, and they view that as it should be coded as death due to Down syndrome, ultimately, as the underlying cause. Well, I disagree. There are many people in our community living and dying from different types of dementia. Some of those are strongly genetically determined. They’re single-gene abnormalities that cause that. But we don’t code that person’s cause of death as their genotype. That would very much the wrong thing to do, so why would we do it for people with disability, including those with Down syndrome?
MS EASTMAN: Thank you. That’s a convenient time. We’ll resume at 2 pm, if that’s ‑ ‑ ‑
COMMISSIONER SACKVILLE: 2.01.
MS EASTMAN: Thank you, Commissioner.
ADJOURNED [12.59 pm]
RESUMED [2.01 pm]
COMMISSIONER SACKVILLE: I’m reliably informed it’s 2.01, so we can proceed.
MS EASTMAN: Wait 30 seconds and I’ll get there. Well, I will take the time that’s available, even if it’s 30 seconds. So we’re continuing with Professor Trollor’s evidence. And I’m up to the recommendations part. So, Commissioners, you will find that starting at paragraph 207, on page 32 of the statement. So, Professor Trollor, you start, in terms of recommendations, by highlighting the existing guidance for action. So do we understand this part is that there is already some work done and there are some systems or practices in place which should be taken into account in understanding the recommendations that you make?
PROF TROLLOR: Yes.
MS EASTMAN: And so you wanted to highlight that it’s not a case where you’re coming to the recommendations as if there’s nothing that’s gone before.
PROF TROLLOR: That’s right.
MS EASTMAN: And so it’s to understand that the recommendations are to follow on from some of the work that’s already been done. Is that a fair summary of where we start, in terms of understanding the existence – the existing guidance for action?
PROF TROLLOR: Yes.
MS EASTMAN: All right. The first matter that you note is that your centre has led the development of what is called accessible mental health services for people with intellectual disability, a guide for the providers. And you have – and you’ve made a reference to that. We have included that document in part D of the Commission’s tender bundle behind volume 2 and then at tab 16. And I don’t want to – I could probably take the rest of the day just working through the Guide but, Professor Trollor, what can you tell us about the Guide, which is quite lengthy and very detailed – but who are the providers to whom this is directed, and how has this Guide been used in practice?
PROF TROLLOR: The Guide was developed collaboratively with representatives from health, mental health, advocacy, other relevant agencies, and funded by the Australian Government Department of Health, with the purpose of ensuring that, at each level of the mental health services system, practitioners and organisations were aware of how to accommodate the needs of people with intellectual disability, to make the health services accessible around mental health.
MS EASTMAN: And if somebody wanted to have access to the Guide, is there a way that they could find that easily online or in some other form?
PROF TROLLOR: It’s a publicly-accessible document on the Department of Health’s website and our own website at UNSW.
MS EASTMAN: And have you had any feedback or evaluation about the effectiveness of the Guide, to the extent it’s made any change in practice?
PROF TROLLOR: It provides some useful recommendations. But like many documents that are developed with good intent, it tends to be relegated to a shelf after several years. And I think the actual implementation part of it was, really, never funded. The development of the Guide was funded.
MS EASTMAN: Is the Guide in its present form still relevant or does it need to be updated from the work that you’ve done in 2014?
PROF TROLLOR: I would say that the recommendations are still valid today. I tabled it primarily as an indication that there’s some sector wisdom, not just things that I think are good, but that have been concluded by a group that may help around mental health. But it could be a useful template, because many of the issues are around communication, principles and practice with people with intellectual disability, which are equally relevant to whole of health as they are to mental health.
MS EASTMAN: And so would it be fair to say, if the Commission was to have regard to the Guide, that, notwithstanding its publication in 2014, it still provides a very reliable account of some good practice?
PROF TROLLOR: That’s my opinion, yes.
MS EASTMAN: The next matter is the ‑ ‑ ‑
COMMISSIONER ATKINSON: Sorry, could I interrupt? You talked about funding for the development of the Guide, but we know implementation, obviously, is critical. And the implementation, you say, wasn’t funded?
PROF TROLLOR: No, there was no funding for an implementation.
COMMISSIONER ATKINSON: Now, where would funding for implementation come from, if it were to be provided?
PROF TROLLOR: In keeping with the development of the Guide, the Commonwealth Department of Health.
COMMISSIONER ATKINSON: Thanks.
MS EASTMAN: So the next matter is the National Roundtable in 2018. And you deal with this at paragraph 210 of the statement. And the Roundtable developed a communiqué, which had recommendations from the work of the Roundtable. And the communiqué is included as part of the tender bundle behind volume 5 of part D, at tab 79. So can I ask you a little bit about the communiqué and how the recommendations came about?
PROF TROLLOR: In a research partnership with relevant sectors, including New South Wales Health, we conducted a program of research over a series of five years, which looked at access to mental health services for people with intellectual disability. And as a translational component of that, we convened – gauged sector interest. I personally went around to each state and territory, health and disability departments, to invite them to a Roundtable and we convened a national event, with reasonable representation for most jurisdictions and across different agencies of relevance. The communiqué, ultimately, was shaped from a process conducted on the day, which was to canvass, via an electronic system, the key priorities for action under eight elements of an effective system for people with intellectual disability and mental health issues. And these were then shaped into recommendations with a timeline and some suggested groups for responsibility for those actions.
MS EASTMAN: Well, I’m just looking at the document now and I’m looking at one of the elements. And one of them was data, element 7, which is page 34 of the document. And that had a range of suggested pathways, including service mapping, to assist the identification of gaps of intellectual disability, health and mental health services. It also identified the importance of collecting data from people from non-English speaking backgrounds, LGBTQI and Aboriginal and Torres Strait Islander people. And suggested the timeline was that this work be done by the end of 2019. Did that happen?
PROF TROLLOR: No, regrettably not.
MS EASTMAN: Throughout the document, there’s potential timelines that identify work that could be done in 2019. And then, I think the longest timeframe was out to mid-2021. I don’t wish to embarrass you at all, but have any of the recommendations and the timelines been met?
PROF TROLLOR: To be honest, I would have to go through each of them and check. Whilst we’ve been able to progress some of our own research, I’m, at this stage, unclear in my head because I haven’t received direct communication to say that anyone’s taken responsibility. One thing that has happened which – and I’m not sure of it’s a link – is the progress of the National Disability Data Asset. And that, I think, is a really important step.
MS EASTMAN: Just – and I don’t know whether you’ve had an opportunity just to reflect on the communiqué and the various recommendations. Are they still current, notwithstanding some of the timelines are – obviously there’s some slippage there, but, in terms of the substance of the recommendations, do they still remain relevant?
PROF TROLLOR: They do.
MS EASTMAN: Then, the next one was a national population health strategy. And you referred to this at paragraph 214 and following. And is it fair to say that this has then led to some work that occurred in August last year, with the development of a national roadmap?
PROF TROLLOR: I’m not directly responsible for that National Roadmap. The initiative was initiated, as I understand it, by the Minister for Health.
MS EASTMAN: But you were involved, weren’t you, in a Roundtable in relation to the development of the roadmap? Is that right?
PROF TROLLOR: That’s right. I was involved in some advocacy before the last Australian Government election. And, partly, my understanding was that this initiative arose out of some of that advocacy and the commitments made by government.
MS EASTMAN: Okay. Then there is the – so the outcome of the Roundtable in August was also to develop some stages in terms of the implementation of a range of recommendations. And just looking at that document – and, Commissioners, this is an important document. It’s in part D, behind volume 3, tab 28. And it’s a document that some of the witnesses giving evidence next week will also refer to. This – in contrast to your communiqué, this roadmap looks at a 10-year plan for implementation. And would it be fair to say – and I’m doing this at a very high level – if one looks at the communiqué from 2018 and then looks at the roadmap developed from the Roundtable in August last year, that some of the matters identified in the roadmap’s 10-year plan are the sorts of things that you identify in the communiqué that could be done within a year or two? Is that right?
PROF TROLLOR: That’s correct.
MS EASTMAN: And you may not know the answer to this, why will it take a 10-year plan to achieve some of the outcomes that a couple of years ago you thought should be achievable in two years?
PROF TROLLOR: I think it’s fair to say that advocacy efforts in this area have been going on for many years, through groups like the New South Wales Council for Intellectual Disability, which has led national advocacy, but that – the response, although very sympathetic and understanding, is one of incremental and very slow steps, whereas what we need is, I think, a fast-paced reform. So I think the time difference represents, perhaps, that issue, that people are prepared to do something but not prepared to take a step back and look at the population health needs and make strong recommendations and act.
MS EASTMAN: I think – fair reading of your statement, and particularly at 218 – that you’re supportive of the value of this work. So you don’t shy away from that. But my question was, really, trying to understand why it would take a 10-year process and why it is so incremental in the way in which those initiatives might be implemented. And so maybe you’re being diplomatic, but am I understanding that you think it can be achieved in a period of time under 10 years?
PROF TROLLOR: I think the recommendations we made in the communiqué were reasonable, in terms of the suggested timeframes, and they weren’t things that I just dreamt up but things that we collectively agreed were doable within those timeframes. My sense of the disconnect here is – and as I said in a statement, I fully support the work that the Commonwealth has initiated in this area on the roadmap, and I see immense value of it. And I can see the value that it will become to people with intellectual disability. But the reality is that there’s a gulf between what needs to be done and what is currently on the plan to be done. And the timeframe is inadequate, in my view.
MS EASTMAN: I think one aspect, in terms of the work associated with the roadmap, is training, particularly of the health workforce. And this is a particular matter that you deal with in your recommendations. And I think – is it right to say that you’re very supportive of some training across the board in terms of the health system, but you’re concerned that there’s no timeframe for implementing training, no funding for training and no clear path as to how the training might occur?
PROF TROLLOR: That’s correct. For example, we put forward a proposal to develop curriculum toolkits for nursing and medical curricula across the country. And there’s no current – and I’m not aware of a current timeframe for that project.
MS EASTMAN: So that – and that’s, just to draw your attention to it, is the comments that you’ve made at paragraph 238. In terms of the work of this Royal Commission and given the limitation of our time over the two-week period, the Commission has received some information from some of the colleges in relation to the training and curriculum offered to practitioners who are seeking a specialisation or membership of the college. And that seems to be wide and varied. Do you think, based on your experience, that there would be utility in the Royal Commission addressing issues such as timeline process and examining the basis for funding, the need for funding, by looking specifically at training on a national basis across all health disciplines?
PROF TROLLOR: I think that would be enormously helpful to accelerate progress. At the moment, there are key, small groups and academics and people with disability who are pushing such action, but it’s actually really difficult to get traction and to get parties on board. So if that please the Commission to make such a recommendation, I think that may accelerate progress.
MS EASTMAN: Part of it, as you say in 239, as you identify in the communiqué, is that if there is to be training, then it, really, should occur sooner rather than later. Is there any reason why we have to wait in relation to training? Is it difficult to work out what we need to train the health sector in?
PROF TROLLOR: It’s fair to say that we should, in an inclusive manner, develop the relevant curriculum tools and that they should be trialled before a full-scale implementation.
MS EASTMAN: Well, can I challenge you on that. Yesterday, Toni Mitchell gave evidence to say that, because of her experience with her son, she goes into the Toowoomba Hospital and she does the training. She is not trained as a trainer. Her experience is not one in health. She has taught herself in terms of health literacy. But she has said that just her own direct experience and being able to give an example of how she has been treated in the health system does make a difference. So can I challenge this idea that we have to evaluate and test and pilot before we know that training is going to work? And I’m not suggesting that Ms Mitchell then goes on a national tour to do that, but I’m giving a very small example where I’m challenging this idea that training is something complex and has to wait.
PROF TROLLOR: Many people in the room and listening are perhaps teachers in various universities. I, myself, lecture medical students. And, as part of the lecture we convene, we have a teacher with an intellectual disability lecture the students and a parent who has lost a child with intellectual disability and autism presenting. This is perhaps the most powerful tool to change attitudes and to enthuse young future doctors with a willingness to develop their skills in this area. The – I guess the purpose of an evaluation is so that you can prove the value of something to a potential sponsor, notwithstanding it’s very clear the impact of these sorts of initiatives and what needs to be done.
MS EASTMAN: I think Mr Simpson, who will give some evidence next week, says in his statement – and if we need a reference, it’s paragraph 134. His statement’s found in part B of the tender bundle behind tab 12. And this is at page 30 – that if there is training, the training also has to be values-based. Would you agree with that?
PROF TROLLOR: Absolutely, yes.
MS EASTMAN: And one of the issues in medicine is our focus often on technical training and looking at things in a very scientific way. Is this something that requires perhaps a different approach of stepping back, and whether we call it values or whether we call it human rights, will that be an important part of changing attitudes?
PROF TROLLOR: It will. And perhaps the most potent tool there are people with intellectual disability and autistic people themselves, because their very presence as teachers in universities ensure that barriers are immediately broken down. In the lectures we deliver, the star of the show is the person with the disability. The students don’t want to come and talk to me after the lecture; they want to talk to the person who has presented with a disability. And you can see the instant warmth and value of that person and their life in that setting.
MS EASTMAN: And I think ‑ ‑ ‑
COMMISSIONER ATKINSON: Can I just ask here. I just want to remind ourselves how important this is. How many preventable deaths of people with intellectual disability and autism are there a year in Australia?
PROF TROLLOR: In my estimate, in those over the age of 20 and dealing just with people with intellectual disability, the extrapolation from the New South Wales data is 400.
COMMISSIONER ATKINSON: So that’s what we’re dealing with. So every year we delay, there’s 400 people die.
PROF TROLLOR: In my estimation, Commissioner, yes.
MS EASTMAN: Can I turn to some of the other specific recommendations at 219. So it’s page 34 of your statement. You turn to the World Health Organisation and identify the six building blocks of health systems that have been used to frame strengthening health services worldwide. Are these six recommendations that are identified are not limited or specific to intellectual disability; they’re health systems generally?
PROF TROLLOR: That’s correct.
MS EASTMAN: So the approach you’re taking is to say if we use the expression “mainstream health system”, to which people with intellectual disability and autism have to come into to receive services, that we start with the existing mainstream system, strengthen that system, and then build into that accessibility for people with intellectual disability. So that’s the framework?
PROF TROLLOR: That’s correct.
MS EASTMAN: And on the area of service delivery, you say this can be done by having reasonable adjustments. So this is paragraph 221.
PROF TROLLOR: Yes. Would you like me to expand?
MS EASTMAN: Do you want to say something about – for some of us as lawyers, reasonable adjustments has a technical meaning, but I think you’re using that in a way that reflects the objectives of some legislation in the United Kingdom, which talks about reasonable accommodations, reasonable adjustments and positive measures to enable people to achieve what’s called substantive equality in the access to services. So cut the legal definition. Again, back to the coalface, what does this actually mean?
PROF TROLLOR: At the coalface, this means practitioners are obliged to adjust their practice to meet the needs of people with intellectual and other disabilities. And this is a legislative requirement in some jurisdictions internationally, including in the UK National Health Service. In the Australian context, we’ve identified those adjustments very clearly in the national Guide. That was referred to earlier. And we feel that these adjustments should be universally adopted in clinical practice.
MS EASTMAN: You want them to be a mandated requirement for health practitioners and services?
PROF TROLLOR: That’s right.
MS EASTMAN: And how would that be evaluated or monitored?
PROF TROLLOR: There are ways of ensuring health services do such things. All health services are accredited, for example. And ahead of any accreditation in hospitals that I’ve worked in, there’s an urgent email that goes around and it’s repeated to ensure that I’ve done my mandatory training. And if I haven’t, I get into trouble.
MS EASTMAN: All right.
PROF TROLLOR: And statistics are given to the credentialers to benchmark the training of the health staff along the lines of mandatory training. These mandatory training modules could easily include ones that assist people in understanding reasonable adjustments for people with intellectual and other disabilities.
MS EASTMAN: All right. And, also, you talk about the provision of health informations. This is paragraph 224 and following. In summary, it’s the need for consumer health information and promotion material to be available in appropriate formats for people with disability. I assume that’s not limited to intellectual disability, but across the board; is that right?
PROF TROLLOR: That would be the desire. I guess, our own experience is that it – such material needs to be developed with the input from people with disability. An example is New South Wales Health recently funded us in a project to develop Easy Read materials for people when they access mental health – public mental health services in New South Wales. And that project is nearer to completion.
MS EASTMAN: It doesn’t already exist?
PROF TROLLOR: No.
MS EASTMAN: So have there been any Easy Read material for mental health before your work?
PROF TROLLOR: No, there hasn’t, including, you know, the basics of your rights if you’re detained as an involuntary person under the Mental Health Act. But the funding, I think, is testimony to the need, but this is just in one jurisdiction. We, really, must make sure that these kind of – this kind of information is accessible, so that people understand what the health service will do for them and their clinical care pathway and expectations through the health service.
MS EASTMAN: All right. The next, at 228, is the development of services and service models. Can I summarise it this way, that in effect what you’re saying – which is in 232 – is that there needs to be a one-stop comprehensive evaluation of the health care needs that cover all aspects of health care. So this is to have an integrated system, but also to have in that system the ability for there to be continuity of care; is that right?
PROF TROLLOR: That’s right, including the development of clinical care pathways for each core component of the health service that is, really, accessible to people with disability and their families.
MS EASTMAN: Okay. I think we’ve then dealt with, albeit at a very high level, the training. But one aspect that comes out of training, which you identify on page 40 at 251, is a career pathway development for key medical specialties. And you say there that it’s vital that there be career paths available for medical practitioners who wish to practise in subspecialties in this area. But then you say this – and I’m interested to understand what has happened here:
Despite training 15 new subspecialty psychiatrists in New South Wales over the past 10 years, very few of them have been able to find funded positions within the New South Wales public health system.
Now, I read that – one shakes a head and say what has gone wrong if we are training people, but then there is no career pathway and there are no funded positions in light of all of the data? So where is the – where do we find this disconnect? Why is this the case?
PROF TROLLOR: So these training positions I refer to are 15 trainees in intellectual disability mental health. And they were funded initially by the Department of Ageing, Disability and Home Care, part of New South Wales Government. And then the funding has been – is now administered through the Health Education Training Institute part of New South Wales Health. So these are – this is a very innovative program. It’s a one-year intensive subspecialty training. But part of the issue is we haven’t had the systems changes within the public mental health system to ensure that there are funded positions available, even though at this stage we know that people with intellectual disability access mental health services at very high rates, at a very high cost to the health budget.
MS EASTMAN: Then the next is the development of a national training centre and resources. And this, I think, is an issue that you touched on in answering some questions from the Chair earlier today in relation to the work that you and your centre does, but to take that to the type of work that needs to be done on a national level; is that right?
PROF TROLLOR: That’s right. And perhaps if I could highlight one point that, you know, initiatives that are very helpful in raising awareness and in providing solutions, including initiatives like the Cooperative Research Centre for Living With Autism, are, really, dependent on continuing funding. The CRC finishes soon. And, you know, to continue that capacity-building is very important for people on the autism spectrum.
MS EASTMAN: Okay. The next is health information, which you deal with at 255. And you say:
Critical to improving health outcomes for people with intellectual disability and people on the autism spectrum is accountability by services and government.
And so part of this is to have a relevant process for collecting data and to have consistent data across the country; is that right?
PROF TROLLOR: That’s right. We routinely in Australia report on various population groups who have inequity, whether it be a health services provision or other outcomes. And so I would see that it’s a reasonable step that such a population health initiative should be undertaken for the groups we’ve discussed today. And the outcomes, particularly in the health domain, are routinely reported.
MS EASTMAN: Then next is medical products and technologies. And this isn’t an area we’ve touched on earlier in your evidence, but you’ve addressed this at 262 in your statement. But, in summary, do we understand that as new technologies have come online and that new technologies are assisting the delivery of medical services in a timely fashion, also assisting in terms of communication, but the people have been left behind in relation to the use of new technologies are people with intellectual disability and other developmental disabilities; is that right?
PROF TROLLOR: That’s correct. A simple illustration is e-health initiatives where e-health treatment programs are now routinely available for people with mental ill health. Until recently when the Black Dog initiated a project in collaboration with ourselves, there were no programs adapted for people with intellectual disability in Australia. I’m pleased to report that the Black Dog has near completed a tool that will be available to people.
MS EASTMAN: In light of the statistics that we talked about earlier from the US research in relation to people with autism, what facilities are available to e-health initiatives for the cohort of people with autism?
PROF TROLLOR: There’s increasing information about the issue through the Autism CRC, but I’m not aware of electronic treatment programs, which would be very beneficial to people, particularly if you’re someone who struggles to access services in a conventional manner.
MS EASTMAN: Okay. The next larger area is financing. And the first matter that you note is a need for the revision of the Medicare Benefits Schedule. You deal with this at paragraph 266. And so is this an issue about how long someone can spend – in particular, sorry, I mean a general practitioner or psychiatrist can spend in a consultation if the patient is someone with intellectual disability or autism? What’s the issue here?
PROF TROLLOR: It’s largely about how long and remuneration for the degree of complexity that the individual may have. So, you know, the MBS schedule is revised periodically, but it’s hard to get change that supports people with these sorts of complex needs.
MS EASTMAN: All right. And then the next is the investment in health services, which you deal with at 268 and following. And I think that your centre has done some modelling in terms of the costs associated with delivery of health care from the perspective of appropriate care for people with intellectual disability. So what are the outcomes in terms of the modelling – the cost modelling?
PROF TROLLOR: When we looked at representation of people with intellectual disability in the New South Wales Health system, we saw a very high proportional representation in both emergency department presentations, including patient stays, including physical health and mental health and higher use of ambulatory mental health. We used these data to model the cost of what are called in the document acute hospital separations, which, essentially, mean episodes of care and discharge from hospital,. And we estimated from the New South Wales data that a total of about $1.15 billion Australian dollars was being spent nationally on acute hospital separations for people with intellectual disability, representing just over four per cent of the national health expenditure on separations.
MS EASTMAN: So what’s that telling us, that – and I think you say that the acute care end of the health service is letting people with intellectual disability down. But we shouldn’t be spending that type of costs if the other mechanisms that you’ve talked about, particularly preventative health and routine primary health care, is better in servicing the needs of people with cognitive disability; is that right?
PROF TROLLOR: That’s right. And that small investments could potentially have substantial bearing on the $1.15 billion, given we know that people with intellectual disability come to hospital frequently, including through failed admissions, that they are readmitted more often to hospital after a prior admission.
MS EASTMAN: The next area that you look at is leadership and governance. And this starts on page 44 at paragraph 273. And I wonder, just perhaps, if you can deal with this generally. There’s a lot of points that you’ve raised in relation to leadership and governance and touch on issues concerning health and disability policy. Some of this we’ve covered during the course of your evidence this morning and this afternoon. But this, standing back, seems to encapsulate the importance of leadership at a policy level. And that’s leadership from government, not just, with respect, relying on people like you to have to develop the policy. So you can be involved in that, as can a range of people. But the leadership needs to come from government in implementation. Is that a fair summary of what you’re saying?
PROF TROLLOR: That’s correct. And it needs to be inclusive of people with lived experience and carers.
MS EASTMAN: And the critical aspect of investment in research, which would, obviously, be the evidence base for underpinning policy development and identifying effective implementation strategies, but also looking at evaluation of programs. This is something that you’ve highlighted. And I think the Commissioners have asked you about that during the course of your evidence. And we see that at each point where you identify a lack of data or a lack of research in particular areas in Australia. So this is a key issue, is investment in research.
PROF TROLLOR: In sustainability of research efforts, I think building a body of knowledge that may help.
MS EASTMAN: Then leadership in the disability services sector. And you deal with this at 286. What did you want to sort of say? Is this part of coming back to ensure an integrated or a interconnectedness in terms of leadership in the two areas, health and disability?
PROF TROLLOR: That’s right. Certainly disability professionals play a very substantial role in assisting people with access to improved health care. And simply, for example, including health in the national standards for disability services could be one measure, as was recommended in the communiqué.
MS EASTMAN: Then you deal with some quite specific actions to monitor and prevent deaths. And some of this material we’ve addressed earlier, so I don’t need to repeat that, but was there anything specific that we hadn’t covered earlier in terms of the collection of data and the role of the data being reliable to be able to be analysed at a national level? Was there anything else you wanted to add?
PROF TROLLOR: Other than for some of the specific causes of death there are some key specific recommendations around risk of choking, aspiration, epilepsy management and unhealthy lifestyles that were included in the recommendations from the scoping report.
MS EASTMAN: All right. And that’s a very quick race through the recommendations, which you’ve dealt with in some detail in the statement. You bring this altogether in the conclusion. I think, rather than just referring to what you’ve said at paragraph 301, what do you want to say to the Royal Commission in addition to what we’ve covered or anything by way of conclusion?
PROF TROLLOR: Look, I feel really privileged to be working as a clinician and researcher in the field. And my position affords me certain hats and points of view that enable me to see things as a person. Firstly, my contact with people with disability and their families leaves me with a distress and a deep sense of responsibility, essentially, around the loss of health and loss of life.
As a clinician, I provide second opinions for people with complex needs. And I see the direct impact of the difficulty people have in accessing health care. And, as a researcher, through mixed methods research and inclusive research practices, I see the gaps in services and policies and its impact on people with disability and those around them. And, essentially, none of this means anything much, except that it echoes the lived experience that people have, both of the loss of health status and, in some instances, loss of life. So I feel quite deeply concerned about the issue and the lack of action, even though these issues have been apparent for many years now.
But I do feel optimistic. I’m an eternal optimist. I feel optimistic about the potential of people with disability, their families, leaders in government and disability and health care sectors, and the Royal Commission and its findings to ultimately drive some transformational change. And I thank the Commission for this opportunity to represent these views. Thank you.
MS EASTMAN: Commissioners, those are the questions I wanted to ask Professor Trollor. You will have seen that I’ve asked a number of questions that would touch on the interests of New South Wales, the Commonwealth and perhaps other states and territories. I’m not sure whether any of the representatives from the Commonwealth or New South Wales have any questions or which to seek to seek leave to ask any questions.
COMMISSIONER SACKVILLE: Well, probably the best thing to do is ask them.
MS FURNESS: Thank you, Commissioner. I have no questions.
MS MUNRO: No questions.
COMMISSIONER SACKVILLE: Professor Trollor – does that conclude your ‑ ‑ ‑
MS EASTMAN: It does. Unless there’s any further questions from the Commissioners.
COMMISSIONER BENNETT: I’ve just got one last question for Professor Trollor. In your statement in paragraph 268 and 272 in which Ms Eastman touched upon, it’s quite a practice when you look at health prevent or reforming an aspect of health that you would do a cost-benefit analysis. There’s so much material on the cost of smoking on the community, of alcoholism and domestic violence. You’re saying that there has been no cost analysis done on improving and better health outcomes for people with disability and what that might mean for longer, healthier lives for them in Australia. Is there anywhere – any other country that may have done that analysis that shows that strategic investment, early intervention that contributes to better health outcomes for people with disability?
PROF TROLLOR: I think it’s needed. In the United Kingdom there is a government funded agency that routinely collates and reports on data. I’m not aware of it reporting health economic data, but perhaps that’s just a gap in my knowledge. Certainly it’s what we need.
COMMISSIONER SACKVILLE: Professor Trollor, thank you very much indeed for both your statement and for your evidence, which has been extremely helpful. We’re very grateful for your assistance. Thank you.
PROF TROLLOR: Thank you, Commissioner.
MS EASTMAN: Could Professor Trollor be excused.
COMMISSIONER SACKVILLE: Certainly.
<THE WITNESS WITHDREW [2.41 pm]
MS EASTMAN: So the next witness is Dr Jacqueline Small. And Ms Wright will be taking Dr Small’s evidence. So we might just need to do a slight reassemble at the bar table.
<JACQUELINE ELIZABETH SMALL, AFFIRMED [2.42 pm]
<EXAMINATION BY MS WRIGHT
COMMISSIONER SACKVILLE: Thank you very much.
MS WRIGHT: Could you state your name to the Commission, please.
DR SMALL: Jacqueline Elizabeth Small.
MS WRIGHT: And, Dr Small, you’re a developmental paediatrician.
DR SMALL: I am.
MS WRIGHT: And a fellow of the Royal Australasian College of Physicians.
DR SMALL: Yes, I am.
MS WRIGHT: And you’re the team leader of the Disability Specialist Unit within the Sydney Local Health District?
DR SMALL: Yes.
MS WRIGHT: Are you the president of the Australian Association of Developmental Disability Medicine?
DR SMALL: I am. And in that capacity I’m presenting evidence today.
MS WRIGHT: Thank you. In addition to your role as president, do you hold a number of other professional roles, including as clinical leader for specialised team for intellectual disability Sydney ‑ ‑ ‑
DR SMALL: Yes.
MS WRIGHT: ‑ ‑ ‑ within the same Local Health District?
DR SMALL: Yes.
MS WRIGHT: And are you a member of the executive committee of the Agency for Clinical Innovation, Intellectual Disability Network?
DR SMALL: I am.
MS WRIGHT: As well as board director and Chair of the Fellowship Committee of the College of Physicians?
DR SMALL: Yes.
MS WRIGHT: And your statement is behind tab 7 of the tender bundle B for the Commissioners.
COMMISSIONER SACKVILLE: Thank you.
MS WRIGHT: I just want to start with your day-to-day work, Dr Small. You’re a consultant developmental paediatrician at the Disability Specialist Unit. Is that a multidisciplinary team?
DR SMALL: Yes. It’s a multidisciplinary team in which there’s myself, other medical practitioners, social workers and clinical psychologists. And our primary responsibility is for diagnostic assessment of children up to age six. And I have some capacity for seeing young – young people, adolescents, with complex morbidities associated with their developmental disability, typically challenging behaviour.
MS WRIGHT: Okay. And the composition of the multidisciplinary team is yourself?
DR SMALL: Yes.
MS WRIGHT: Are there other medical practitioners?
DR SMALL: There’s a trainee, a paediatric registrar in training.
MS WRIGHT: Okay. And social workers and psychologists.
DR SMALL: That’s correct.
MS WRIGHT: And any other health professionals within that team?
DR SMALL: No. That’s the team.
MS WRIGHT: Are you collocated?
DR SMALL: We are collocated with allied community health services and co-located with new team Strides.
MS WRIGHT: Within a hospital or where are you based?
DR SMALL: We’re in a community health centre.
MS WRIGHT: All right. Now, you’ve said that’s for children up to six?
DR SMALL: We can see children up to 18 or so, however the bulk of children we see are for diagnostic assessments up until about six years of age.
MS WRIGHT: Okay. Now, you’re also the clinical lead of a new or emerging team. And that’s in the Specialised Team for Intellectual Disability Sydney. And is that also called STrIDeS?
DR SMALL: That’s correct.
MS WRIGHT: And that’s going to be a multidisciplinary team?
DR SMALL: Yes.
MS WRIGHT: I just wanted to ask you about the difference between the Disability Specialist Unit and this new team of which you will be a member. Could you explain for the Commission what the difference is?
DR SMALL: Yes. So I’m really pleased to have the opportunity to be part of this new team, STrIDeS, which is one of three new specialised teams for intellectual disability established with new funding in New South Wales Health. And the brief for these teams are to see children and adolescents and adults with intellectual disability and complex unmet health needs. The primary model of care is an integrated model of care, in which there’s protected resources for capacity building in both the primary health sector and the specialist sector.
MS WRIGHT: Yes.
DR SMALL: The ‑ ‑ ‑
MS WRIGHT: Sorry. You might just need to slow down slightly ‑ ‑ ‑
DR SMALL: Sure.
MS WRIGHT: ‑ ‑ ‑ Dr Small.
DR SMALL: Okay.
MS WRIGHT: Thank you.
DR SMALL: The composition of the team includes myself, as a paediatrician, an adult rehabilitation specialist, social worker, clinical nurse consultants and some temporary staff who will predominantly see people with mental health problems on the team, and that will include a psychiatrist and a psychologist.
MS WRIGHT: All right. And that deals with the whole life span, in terms of the patient cohort that you’ll see?
DR SMALL: The whole life span is eligible. Yes.
MS WRIGHT: Okay. And what is the model of care? Is it for ongoing care or a single consultation and assessment of the patient’s needs from a global perspective? If you could explain what the model of care is?
DR SMALL: The primary model of care is for, predominantly, a single assessment, with some short-term follow-up for a person with intellectual disability. And that short-term follow-up is designed to assist other health professionals, either in the primary health sector or the specialist sector, in continuing care for the person with intellectual disability. So it’s not an ongoing service.
MS WRIGHT: All right. And do you draw your patients from the entire health district, the Sydney Local Health District?
DR SMALL: Yes. So the model for our team is that we are primarily based in the Sydney Local Health District, and we will be providing outreach to Western Sydney Local Health District.
MS WRIGHT: Okay. Has the STrIDeS team commenced its work yet?
DR SMALL: We are still establishing our team. We still have some more recruitment to go. We have started capacity building and building partnerships with Western Sydney and with our primary health colleagues in the Central and Eastern Sydney Primary Health Network. We have not yet started to see patients, however.
MS WRIGHT: Okay. And when do you expect that to commence?
DR SMALL: We’re hoping we’ll be seeing patients from about late April.
MS WRIGHT: All right. And if I’ve understood correctly, the model does not currently allow for ongoing care, just some short follow-up care?
DR SMALL: That’s right.
MS WRIGHT: All right. Okay.
DR SMALL: So one of my concerns is that we’re not sure how well other aspects of the health system will be able to continue care for people with complex and chronic health care needs, which is who the main population is to be targeted – for these teams.
MS WRIGHT: All right. And one of the purposes of these new teams – and I believe there’s your team – your STrIDeS team, will be one of three within the state; is that correct?
DR SMALL: One of three new teams to a total ‑ ‑ ‑
MS WRIGHT: Yes.
DR SMALL: ‑ ‑ ‑ of six teams. That’s correct.
MS WRIGHT: Okay. And one of the purposes is also capacity building of mainstream health professionals ‑ ‑ ‑
DR SMALL: That’s correct.
MS WRIGHT: ‑ ‑ ‑ in the system; is that correct?
DR SMALL: Yes.
MS WRIGHT: And how, in such a massive system, as New South Wales – do you envisage that that capacity building will work in practice?
DR SMALL: I think that we will start slowly and continue to grow our contributions, to improving the knowledge and skills of health care practitioners. So we’ve started building a relationship with a Primary Health Network and we’ll be delivering some training sessions to the GPs in the area. We’re also looking to build skills of health professionals in the district, through supportive work from the health staff, particularly the nurse on our team, who, we expect, will be able to assist mainstream health professionals in delivering their work; for example, if a person with intellectual disability has presented to the emergency department or has been admitted to hospital. We’re also looking at tools that might assist with improving skills of health professionals, to better support people with intellectual disability.
MS WRIGHT: Now, I just want to ask you about your work in the Intellectual Disability Network. That’s ‑ ‑ ‑
COMMISSIONER SACKVILLE: Sorry. Just ‑ ‑ ‑
MS WRIGHT: I’m sorry.
COMMISSIONER SACKVILLE: ‑ ‑ ‑ before we ‑ ‑ ‑
MS WRIGHT: Yes.
COMMISSIONER SACKVILLE: ‑ ‑ ‑ get to that, I appreciate that you’re not operational, as it were, just yet. What will be the basis of referrals to your group? Who is going to refer, by what criteria, and so on?
DR SMALL: The criteria established by New South Wales Health is for people with intellectual disability with complex chronic unmet health needs. And I’m anticipating that would be a fairly large population, and I’m anticipating that it will be beyond our capacity to meet their needs. So we’ve yet to determine how we will prioritise people we will see in the team and how we will capture unmet needs in order to effectively communicate how far we’re able to reach into the needs of people with intellectual disability. So we’re still developing those processes and I expect we will have referrals from within the health sector, the hospitals, hopefully, and the primary health care. But I expect there will be substantial unmet need.
MS WRIGHT: And is the idea that the multidisciplinary team will form part of the patient’s existing network of health services? So you will make referrals back to a GP or paediatrician, with a care plan going forward?
DR SMALL: That’s correct. And we’ll be looking at ways that we can maintain relationships. So there are tools that have been developed, such as Project ECHO, which is an innovative program that combines professional development with case management. So we’re also looking at tools like that, which may assist us in continuing to support other health providers.
MS WRIGHT: Now, moving to the Intellectual Disability Network, that’s a network under the auspices of the Agency for Clinical Innovation?
DR SMALL: That’s correct.
MS WRIGHT: And does that draw together health professionals from across the health sector who have an interest and practise in intellectual disability?
DR SMALL: That’s true. And it also includes people with lived experience and people from outside the health sector.
MS WRIGHT: And you refer, at paragraph 19 of your statement, to a significant body of work that the Intellectual Disability Network has conducted in developing some documents and tools to assist local health districts and specialty health networks in New South Wales, on key aspects of health service to persons with intellectual or developmental disability. Is one of those documents called “The Essentials”?
DR SMALL: Yes. That’s correct.
MS WRIGHT: And did you contribute to that document?
DR SMALL: I did.
MS WRIGHT: And what’s the purpose of that document?
DR SMALL: “The Essentials” represents quite a large body of work undertaken under the auspices of the Intellectual Disability Network and the ACI. And it’s brought together some important background information, foundations and principles, including the rights for people with intellectual disability, to expect the highest standard of health care. It’s collected together a range of very useful resources and tools that can assist improving health care, training resources, skills-based resources, information and – from people with lived experience; that can support health care professionals in understanding just what it’s like. And also includes a self-assessment tool, which could be used by Local Health Districts to evaluate their progress and how effective they are at supporting people with intellectual disability.
MS WRIGHT: And, to your knowledge, is that used?
DR SMALL: I’m not aware that it’s been implemented in any Local Health District.
MS WRIGHT: All right. I just wonder if we could bring that document up just briefly. It’s at tab 24, Commissioners, of tender bundle D. That’s the first page. Is that the document ‑ ‑ ‑
DR SMALL: Yes.
MS WRIGHT: ‑ ‑ ‑ Dr Small?
DR SMALL: That’s right.
MS WRIGHT: And if we could turn to page 23 or 24, headed Communication. Page ending 0128. You referred to a self-assessment tool. Is this part of a self-assessment tool dealing with the topic of communication?
DR SMALL: Yes.
MS WRIGHT: And is that intended to guide health services and ‑ ‑ ‑
DR SMALL: That’s correct.
MS WRIGHT: ‑ ‑ ‑ Local Health Districts about the tools that they could implement or the actions they could take?
DR SMALL: That’s right. And it enables them to monitor their progress against some of the issues and principles that have been developed through this resource.
MS WRIGHT: And it’s a simple yes or no for a lot of the questions. So taking as an example the first one:
All staff, including clerical and clinical staff, are provided with disability awareness training, including a values and attitudes component.
And the fourth item:
Easy English resources are available.
DR SMALL: Yes.
MS WRIGHT: Yes. So we could have that down now. But are there similar – in that document, similar system action checklists dealing with things such as data collection ‑ ‑ ‑
DR SMALL: Yes.
MS WRIGHT: ‑ ‑ ‑ systems, mental health, hospitalisation, integration, and workforce?
DR SMALL: That’s correct. And will reflect some of the things that have been discussed through – here today and that have arisen from the work conducted through the ACI itself. And if I may refer to a survey that was conducted as part of the ACI ID Network – preparation that led up to that. And that was a survey conducted in 2013 and ’14 within New South Wales Health, a self-report survey that picked up some of the issues that you’ve been discussing here today. And this is available in the context report that’s available publicly on “The Essentials” website. So one of the questions was:
Are supports and adjustments routinely available for people with intellectual disability in your LHD?
It was reported to this survey that in five per cent routine adjustments were available. Another question, for example, was:
Does the LHD have information specifically designed for people with intellectual disability and their families, carers or involved professionals?
And in 21 per cent, it was indicated that this type of information was available.
MS WRIGHT: And who was surveyed specifically?
DR SMALL: Members of Local Health Districts.
MS WRIGHT: All right. Now, just going back to the Essentials document. You’ve referred in your statement to efforts to expand that document to a national level.
DR SMALL: That’s correct. Yes.
MS WRIGHT: And is that being done through the IDN?
DR SMALL: Yes. So to the best of my knowledge, this is a unique document and set of resources within Australia. I’m not aware of any other resource like this.
MS WRIGHT: All right. And you’ve also referred, in that context, to the National Safety and Quality Health Service Standards. They’re the standards for accreditation of hospitals ‑ ‑ ‑
DR SMALL: That’s correct.
MS WRIGHT: ‑ ‑ ‑ against safety and quality standards, are they?
DR SMALL: That’s correct.
MS WRIGHT: And you have said that those standards – you’ve made some recommendations, I think, about those standards in your statement. And is the idea that the Essentials document, which is not a mandatory policy directive, could, nevertheless, provide a basis for hospitals seeking accreditation against the National Standards, to demonstrate how they meet those standards?
DR SMALL: That’s correct. So the National Standards is an existing – for quality health care is an – existing standards that are widely applied throughout the country in relation to health care, to give consumers confidence that they are receiving quality and safe services. And so people with intellectual disability should expect the same to apply to them. And we’re looking at seeing if this can be a mechanism for health care services to demonstrate how they meet those standards for people with intellectual disability.
MS WRIGHT: All right. And those standards apply to both public and private ‑ ‑ ‑
DR SMALL: Yes.
MS WRIGHT: ‑ ‑ ‑ hospitals.
DR SMALL: And community health.
MS WRIGHT: Thank you. Now, from around paragraph 24 of your statement, you draw attention to the significant health inequity suffered by people with intellectual and developmental disability. And the Commission’s, of course, heard from Professor Trollor today and you’ve been in the hearing room during that evidence. You referred to systemic neglect by the health system of people with intellectual and developmental disability. And you also refer, at paragraph 111 of your statement, to a lack of national leadership. How would you describe the health inequities experienced by people with intellectual disability or developmental disability and the way they manifest themselves in the health system?
DR SMALL: Well, the health inequities are stark and are persistent, despite having demonstrated over many years – and Professor Trollor referred to Helen Beanges’ seminal work in the early 90s. So those disparities remain stark, despite them having been demonstrated over a very long time. There are some glimmers of change. And I’ve been very privileged to be part of a new initiative, a new strategically-driven initiative in New South Wales Health. And what I have witnessed, as being part of that, is that conversations are occurring, involving mainstream health professionals, that have not occurred before.
So this small but significant injection of new funds is drawing in the mainstream health professionals and embedding an accountability at the highest levels for improving the health of people with intellectual disability. So it is a new way of working towards improving the health of people with intellectual disability. It’s very early days for this initiative. My team hasn’t yet been established and we’re – I think we have to make sure we establish meaningful outcomes, health outcomes, for people with intellectual disability and their families, so we know we’re actually reducing the avoidable health gap.
But I think that when we look – given the complexity of the health needs, that the poorer health outcomes are driven not just by health services but by experiences where they may fall under the auspices of other government departments or the community in general. We must have high-level strategic plans at both state and national level that draw – includes accountability and reporting against the indicators that we want to improve over time. If I may refer to the National Disability Strategy, perhaps, at this point?
MS WRIGHT: Certainly.
DR SMALL: So I contend that there’s a paucity of high-level strategic plans for people with intellectual disability. And I’m not aware of a national strategic plan for people with intellectual disability. The draft roadmap that you’ve referred to today has capacity to be one. There’s potential for it to become a national strategic plan, but I believe there will be requirement for significant investment of funds if that’s to be effectively delivered. And as we’ve heard, there’s a relative urgency for that change to occur in the health sector. The National Disability Strategy is, I believe, auspiced by its initiative of COAG, Australian Governments, both state and federal. And I believe it’s from the Department of Human Services rather than Health.
But it’s a broad, high-level strategy that looks at the needs of people with disability; not just intellectual disability, across a range of domains, but includes health. And the high-level principles would map on to the sort of initiatives that we’ve been talking about today: improved training, improved experience, preventative health care. So that strategy is due to expire this year. And I’m aware of preliminary – well, a report – an early stage, with consultation in preparation for a new 10-year plan. And if I may refer to that document?
MS WRIGHT: Certainly. Could I just clarify, the National Disability Strategy you said is due to expire, is that a 10-year strategy that was commenced in about 2010?
DR SMALL: That’s correct.
MS WRIGHT: And that was signed by the ministers of the states and territories and the Commonwealth?
DR SMALL: That’s correct.
MS WRIGHT: And does it set out high-level policy goals dealing with a national plan for dealing with disability, including health ‑ ‑ ‑
DR SMALL: Yes.
MS WRIGHT: ‑ ‑ ‑ issues? How does that relate to your knowledge to the 10-year roadmap which is currently ‑ ‑ ‑
DR SMALL: It would share some common themes. I think where – I’ve not seen an implementation plan or the details that may have underpinned, perhaps, a more effective outcome for this disability strategy in relation to health.
MS WRIGHT: All right.
DR SMALL: And the National Roadmap potentially will take that further.
MS WRIGHT: Okay. So the Roadmap is dealing specifically with health, but the National Disability Strategy is dealing with other ‑ ‑ ‑
DR SMALL: Yes. That’s correct.
MS WRIGHT: ‑ ‑ ‑ areas as well as health. And ‑ ‑ ‑
COMMISSIONER SACKVILLE: What is the funding for your group?
DR SMALL: For ‑ ‑ ‑
COMMISSIONER SACKVILLE: The group that you’ve described?
DR SMALL: This national ‑ ‑ ‑
COMMISSIONER SACKVILLE: No, no. Not the – no, no. Yours. The one ‑ ‑ ‑
DR SMALL: My funding ‑ ‑ ‑
COMMISSIONER SACKVILLE: You had a number of hats, I see.
DR SMALL: Yes. I do.
COMMISSIONER SACKVILLE: We’re talking ‑ ‑ ‑
DR SMALL: My ‑ ‑ ‑
COMMISSIONER SACKVILLE: ‑ ‑ ‑ the one that provides services to people with intellectual ‑ ‑ ‑
DR SMALL: State-based funding. The – New South Wales Health.
COMMISSIONER SACKVILLE: How did it come about?
DR SMALL: So the new funding has come about through significant advocacy, based on – in part, on research – and Professor Trollor that you’ve been hearing – that has presented the stark health inequalities. But the voice of people with intellectual disability has been front and centre in driving the change to the health sector. And so I’m very pleased that New South Wales Health has seen fit to invest in the health of people with intellectual disability.
COMMISSIONER SACKVILLE: And this was new money. It wasn’t diverted from other health funding?
DR SMALL: Yes, that’s my understanding.
COMMISSIONER SACKVILLE: And can you just tell us, roughly, what the budget is for ‑ ‑ ‑
DR SMALL: That was – in 2018, I think it was about $4.7 million. And there were additional investments on top of that.
COMMISSIONER SACKVILLE: And does that cover just your group? You talked about, I think, six ‑ ‑ ‑
DR SMALL: No.
COMMISSIONER SACKVILLE: ‑ ‑ ‑ groups.
DR SMALL: That covers three new teams.
COMMISSIONER SACKVILLE: Yes.
DR SMALL: There was an investment by New South Wales Health a couple of years before that that led to three earlier teams being established.
COMMISSIONER SACKVILLE: Is there any equivalent in any other Australian state?
DR SMALL: No.
COMMISSIONER SACKVILLE: Thank you.
MS WRIGHT: I think you wanted to refer to a document, Dr Small.
DR SMALL: Yes.
MS WRIGHT: Yes. And what is that document?
DR SMALL: So this document’s called “Right to opportunity: Consultation Report to Help Shape the Next National Disability Strategy”. And it was released in December 2019. And it is a community survey engagement consultation process designed to assess progress in a number of areas. And I might just draw out the aspects relevant to health and well-being, if I may. So just to read from the document:
In the survey –
so there were 2649 public survey responses –
more than half, 58 per cent, of respondents said the health and well-being of people with disability has not changed or has got worse over the past five years. This was the third-worst issue of the nine issues provided, and substantially more people with disability reported it as being worse compared to people without disability. In community workshops many people raised issues with access to mainstream health services and hospitals, primarily related to physical access and having support workers available to assist through health and hospital experiences. There were also concerns about poor treatment by medical professionals in hospitals and health services.
In this area, people said more training for health professionals is required so that they better understand disability, including invisible disabilities. Access to health supports had worsened for people since the introduction of the NDIS due to a passing of the buck between what is covered by health services and by the NDIS. Improvement might happen through better recognising disability and health in hospital and health agreements between Commonwealth and the State and Territory Governments. Mental health needs to be a key focus in the next disability strategy.
MS WRIGHT: Thank you. Now, one of your particular interests is in the area of the need for integrated care.
DR SMALL: Yes.
MS WRIGHT: Is that right? And you spoke at the Commonwealth Roundtable, which took place in August last year.
DR SMALL: I did.
MS WRIGHT: And did you speak at the Roundtable about the importance of properly-funded integrated models of care?
DR SMALL: Yes. I did.
MS WRIGHT: Now, are the teams that are being introduced in New South Wales, including the STrIDeS team, an example of integrated care?
DR SMALL: They are.
MS WRIGHT: And how would you define integrated care?
DR SMALL: Integrated care is a mechanism for bringing together health providers from different sectors, to try and break down – some of the silos that we’ve heard about today can be a very substantial barrier to improving the health of people with intellectual disability and other people as well.
MS WRIGHT: All right. And so it means more than just the sharing of records. It means coming together, as a decision-making team, to look at the person’s whole needs ‑ ‑ ‑
DR SMALL: Yes.
MS WRIGHT: ‑ ‑ ‑ and form a comprehensive assessment ‑ ‑ ‑
DR SMALL: Yes.
MS WRIGHT: ‑ ‑ ‑ of the person’s health needs.
DR SMALL: Yes.
MS WRIGHT: Are there – having multidisciplinary teams is one way to do it. Are there other approaches that can be taken to properly integrate and coordinate care?
DR SMALL: You’ve referred to records. Effectively communicating across the silos, whether they be medical specialist or primary health care, and even other sectors, such as disability sector, is absolutely crucial. And that will take some
investment and novel ideas of how to achieve that. It also requires us to build new pathways to care so that the fractured system works more seamlessly, so we’re working together as a harmonised team. We know how to refer, when to refer and who to refer to.
MS WRIGHT: And what are some of the things that can drive that reform, in order to get effective pathways of care?
DR SMALL: Integrated care is a growing initiative not just in Australia but worldwide. And people are exploring how to embed integrated care into how do we better support people with complex and chronic health care needs. And so we’re still learning about how to effectively implement and embed that type of care, but there will be a range of drivers. One of the drivers is a shift away from episodes of care-based analysis and outcome measures that particularly favour simple problems that are easily resolved by a single professional.
And I’m aware New South Wales Health has been considering other methods of determining whether we are providing successful health care that actually deal with the needs of people. One of the important initiatives that is worth looking at is patient-reported measures. That more effectively captures the experience and the outcomes as reported by patients. However, I’m not aware that these have been adjusted or accommodated for the needs of people with intellectual disability. So that’s a useful mechanism that could be tailored to the needs of people with intellectual disability. We also need funding models to actually match the model of care.
Integrated care involves a lot of time to maintain the relationships and build the pathways. However, there’s a lot of value in doing that. We’ve heard the terrible stories of carers having to devote their lives to managing the health system. The health system has a responsibility for making sure it’s accessible for people with intellectual disability, but it takes resources, often, away from face-to-face funding. So there are both funding models. There’s other drivers of measures of outcome. And there’s the skills to actually work in that particular model of care, which is also required. I think we should look at all of those and some other funding – some other drivers as well.
MS WRIGHT: Now, what can be done? You’ve referred in your statement to a number of areas that require attention. The first, at paragraph 33, is to do with training of health professionals. And you refer, a bit later in your statement, to there being stark gaps in training. That’s at paragraph 59.
DR SMALL: Yes.
MS WRIGHT: In the training, knowledge and skills in the health sector. Health professionals are a multifaceted group. You’re a Fellow of the College of Physicians. What training did you receive when you were going through the college training program, in relation to patients with intellectual disability or cognitive disability?
DR SMALL: I did not – I trained a very long time ago, but I did not receive specific training on intellectual disability. But I was trained as a developmental community paediatrician, and that provides a very solid basis, I think, for providing care for people with intellectual disability. However, I think that the context has moved on. And there is expectation, very reasonable expectation, that all health practitioners should have a baseline level of skills, knowledge and awareness of the health needs of people with intellectual disability. And there ought to be a higher level of training and skills for those who are going to take leadership roles and to be drivers within the health system themselves.
MS WRIGHT: All right. Professor ‑ ‑ ‑
COMMISSIONER SACKVILLE: If I’m ‑ ‑ ‑
MS WRIGHT: Sorry.
COMMISSIONER SACKVILLE: ‑ ‑ ‑ a bright, young medical student and I want to get involved in providing care for people with intellectual disability and I want to do the sorts of things that you’re trying to do with your group, can I get special training for that? Can I undertake a degree that specialises in that, as I could if I wanted to be a psychiatrist or a gastroenterologist or, if you watch the Kominsky report, a urologist, for example?
DR SMALL: So I would encourage all bright young health professionals to consider this field for their future career. There are a complex number of issues that I would like to touch on. Firstly, there are a number of universities that do offer degrees in developmental disability studies, so I think that’s a way of improving skills.
COMMISSIONER SACKVILLE: But what is developmental?
DR SMALL: Developmental are those conditions that arise during the developmental period that have an impact on development.
COMMISSIONER SACKVILLE: No. No. I understand that.
DR SMALL: Yes.
COMMISSIONER SACKVILLE: I mean what is the focus of the course or curriculum? Is it to diagnose and treat or is it something else?
DR SMALL: I’m not familiar with those courses. I’m aware they exist.
COMMISSIONER SACKVILLE: I see.
DR SMALL: There is no specialist in Australia for developmental or intellectual disabilities. There is in some other countries, particularly Holland. I think it’s unlikely there’s going to be a specialist in intellectual disability in Australia soon. But I think what we can achieve are specialists who specialise in and have high level of skills. I think that is achievable within the short and medium term.
COMMISSIONER SACKVILLE: Why are you pessimistic about specialist courses?
DR SMALL: I’m pessimistic about a new specialty in intellectual disability, because I think that’s a complex process managed by the Federal Government. So I think that’s a complex process. But, as I say, I think training people to a higher level of skills is achievable and must be achieved in the short and medium term. I think there needs to be enhancement in curricula. And I think that while curricula are increasingly recognising and mentioning people with intellectual – we need to consider the needs of intellectual disability. I think we need to embed attitudes, values and skills that we would expect for different levels of expertise.
Professor Trollor is involved with some work. And I think that across – as you’ve mentioned earlier, across colleges we’ve got relationships that we can build on to share expertise in order to develop the curricula. But, in order to complement the curricula, we must have training opportunities. And, in reference to the medical training, the medical colleges don’t provide that training. They don’t employ the trainees. It’s the health sector that employs the trainees. And so there’s no – there’s very few dedicated positions. So I’m proud of my rehabilitation colleagues, because they not only have a reasonably well developed curricula; they’ve also had some training positions.
And so on our small multidisciplinary team, the health professionals – the medical health professionals who will see adults-is a rehabilitation physician who has actually been well trained in intellectual disability. However, for specialists, outside one or two small teams, there are no training opportunities. So there’s no training opportunities for general medicine physicians who might be well placed or might be interested in developing a higher level of skills in intellectual disability.
There are programs funded by the Commonwealth Government, specialist – the STP program, Specialist Training Program, that has been developed to build flexibility into training for medical specialists in different types of areas, so outside acute hospitals, and to target specific areas of need in the health sector. And I would contend that type we can maximise the opportunities from existing program and existing mechanisms to meet the needs of people with intellectual disability. And that’s one program that could be targeted.
But, in order to train medical specialists and other health professionals, we actually need dedicated funding for training. And then I’ve been assured by some senior colleagues in general medicine who I’ve been liaising with in the last few days, they are confident that some of these bright young doctors will actually go into the field of intellectual disability, be better trained, and can in the future be leaders in the adult health care sector.
MS WRIGHT: It’s not just doctors who need training in, say, communicating with patients who have intellectual disability; it’s all of the health professions. Would you agree with that?
DR SMALL: Absolutely. And I would even extend that to the secretarial and clerical staff in health care services, as well.
MS WRIGHT: As referred to in that Essentials document.
DR SMALL: That’s right.
MS WRIGHT: Is it over-simplistic to say that, in terms of training, say in the area of communication with such patients, that what holds true for training doctors would hold true for the other professions, nurses, allied health, etcetera? Or do you think there’s specific training that is specific to the professions?
DR SMALL: I think that there’s core principles and core aspects of communication and other skills that we need to learn that are relevant across professionals – across the professions.
MS WRIGHT: All right. Professor Leeder expressed the view that you train people in the system, currently, because of the time lag between conducting the training and their practice. Do you agree with that or do you think there’s a place for some training within universities?
DR SMALL: Training in universities is training future health workforce. So I do absolutely agree that we must be adjusting the training of our future health workforce to meet the needs as we understand them to be. But I think we can also train existing health professionals. For example, I was involved with a small project in – called Say Less Show More, which is a project to train frontline health staff to use visuals to help people with intellectual disability understand what’s happening to them. And this is building on the known communication difficulties people with intellectual disability experience, and that augmented and alternative communication strategies are widely used outside the health system, but sporadically used inside the health system.
These tools are available through the ACI intellectual disability network website, freely available. And our small study looked at its use in a child population presenting to a tertiary emergency department. And what we found was that with a short – short PowerPoint presentation, some coaching to implement and try these tools, with some children with developmental disabilities presenting to the emergency department, but other young children under six years of age, parents like them, they wanted them used, nursing and medical staff like them and they felt they were easy to use. And in some cases they actually transformed the experience of care, not necessarily for children with disabilities, because we didn’t see many, but ‑ ‑ ‑
MS WRIGHT: How were they used?
DR SMALL: They were used to show the children what was going to happen. So they were simple sequence of pictures describing what was going to happen. That’s one tool that can be helpful to reduce the barriers to care. And there are a number of others. But we do – from that small study we concluded that it was cheap, easily used tool without any adverse effects that may have capacity to be scaled up and make a difference to communication with people with intellectual disability, and potentially other barriers, people with – from culturally and linguistically diverse backgrounds, as well, for example.
COMMISSIONER ATKINSON: And people from First Nations communities.
DR SMALL: Absolutely. Absolutely. Although, we would look to work with Aboriginal people and other First Nations people to ensure that the tools were actually appropriate for their needs.
MS WRIGHT: Are those communication strategies included within the idea of reasonable adjustments ‑ ‑ ‑
DR SMALL: Yes.
MS WRIGHT: ‑ ‑ ‑ or does reasonable adjustments deal with something else?
DR SMALL: Reasonable adjustments would include tools like that, but might include other strategies, such as longer – longer – longer appointment times, times being booked at certain times of the day, those sorts of relatively easily achieved adjustments.
MS WRIGHT: Okay. In relation to reasonable adjustments, it doesn’t seem to be a one size fits all thing; it depends on the individual characteristics and needs of the patient. Would you agree?
DR SMALL: Yes.
MS WRIGHT: And it’s something that individual clinicians have to use their discretion about in the particular circumstances.
DR SMALL: That’s correct. So I think – I think there are some principles and core skills that would be common, but you’re absolutely right; they would need to be tailored to the needs of the individual person.
MS WRIGHT: And does that make it a challenge then to mandate the use of reasonable adjustments or how might that be addressed in policy, for example?
DR SMALL: Well, I think that – I think that what we would do, we would identify a suite of easily achieved adjustments that could be made and ought to be expected to be made if a person with intellectual disability requires a health service. And then they may need to be tailored for that individual person. But the person with intellectual disability may well have those needs identified in advance, and particularly if they have chronic needs, then adjusting for those ought to become part and parcel of their contact with the health system.
MS WRIGHT: And an overall care plan, if they have one, ideally.
DR SMALL: Absolutely, yes.
MS WRIGHT: So reasonable adjustments can be used in every health context.
DR SMALL: Yes. And I think that what we would need to ensure is that the health funding models allow for those to be actually delivered by the health professional.
MS WRIGHT: All right. Are there any areas of the health – of health services where you think reasonable adjustments are particularly important, such as in care for persons presenting to emergency department?
DR SMALL: Yes. I think that’s particularly important, because presenting to an emergency department for anyone can be a stressful, anxiety-provoking situation. And those sorts of situations can lead to increased challenging behaviour or distress for a person with intellectual disability. And so reasonable adjustments, such as additional communication aids, can help reduce those consequences of being in a novel environment.
And, as we’ve heard from Professor Trollor, people with intellectual disability are far more likely to be attending the emergency department, compared to the general population. We also know primary health care is a gap for people with intellectual disability. And I would think that our primary health care colleagues could also be implementing reasonable adjustment, such as communication tools that we’ve spoken about.
MS WRIGHT: You say at 58 – at paragraph 58 that things that need to be done to address the complexity of the health conditions experienced by people with intellectual disability include the integrated models of care that are consistently implemented, reasonable adjustments to be widely and routinely available, establishment of networked and specialised teams, health teams, a suitably trained health workforce, innovative models of funding and key performance and other health indicators that capture relevant outcomes and embed accountability. Is there anything that you wanted to add to the concept of accountability? You’ve referred to capturing outcomes. And it seems that the main shifts that are needed are in the statistics around avoidable deaths and gaps in life expectancy, as Professor Trollor gave evidence about. Would you agree with that?
DR SMALL: I would say that is a key high level accountability – or target that we need to be aiming for. But I also think that we need to – there will be a number of other measures of accountability that reflect on other aspects of health care and the experience of poor health by people with intellectual disability, such as relinquishment of care, such as family disruption. Those are really important values to be brought in.
I also think that we need to be more thoughtful about how we consider quality of care and – quality of care, quality of life for people with intellectual disability and particularly how judgment about quality of life may be relevant to decisions made in the health care sector and how we might measure changes in quality of life to track effect of interventions.
MS WRIGHT: And you’re referring to the quality of life perceived by the patient themselves, but are you also touching on perceptions of quality of life by health professionals?
DR SMALL: And also by the carers. And those three may differ. They may not be the same.
MS WRIGHT: The idea that quality of life – there might be a perception which is adverse to the patient’s interests about quality of life with a person with intellectual disability is a shocking sort of idea. I mean, should we believe that is something that’s unconscious in health professionals?
DR SMALL: I think that, as we’ve heard, there’s an invisibility of the needs of people with intellectual disability by and large in the health sector. And I think we’ve heard – I heard some of Toni Mitchell’s presentation yesterday and Professor Trollor this morning –the powerful influence of coming into contact with lived experience and hearing the stories of what it’s really like for people with intellectual disability. And that can be very challenging for people who may not have had any contact with someone and judge quality of life on the basis of their own experience of life. And if you’re a highly trained medical specialist who has been through university and tertiary training, your experience of life is very different.
So we need to find ways of adequately capturing quality of life that resonates in the health setting, acknowledging that we don’t want to provide futile treatment to anyone, but that quality of life may be – for a person with intellectual disability may be perceived quite differently. And we know that people with intellectual disability are deeply valued by their family and provide a rich – can have a rich and varied life, as well. So we need to find ways of capturing that in a way that’s meaningful for driving the health system and driving clinical decisions.
MS WRIGHT: Because you say that decisions about treatment tend to be more conservative – or can tend to be more conservative, due to the presence of disability, rather than active treatments.
DR SMALL: So I believe that can occur.
MS WRIGHT: And is that solely attributable to this idea of diagnostic overshadowing or is it something broader than that?
DR SMALL: I think it’s likely to be due to a range of factors, but that diagnostic overshadowing that you’ve just mentioned will be a key factor. And I think we need to promulgate the information that’s arisen from Professor Trollor’s work and from other work, including work from the United Kingdom, that show that 38 per cent of deaths are avoidable. And unpacking the expected inevitability of poor health outcomes and early mortality that people have associated with intellectual disability and really challenging that concept is something that we must do vigorously.
MS WRIGHT: I just want to turn to an important topic that you deal with in your statement, which is paediatric health care, and, in particular, the transition of patients from the paediatric health care to adult care. So you deal with this from paragraph 64 of your statement. And you say that the models in which paediatric care is delivered vary between the states and as between the rural, regional and metropolitan areas. And, over the page, that the care provided by local health districts is for children and to a significantly lesser extent for adolescents. What do you mean by that? Do adolescents start to drop off and move into the adult system?
DR SMALL: I was particularly referring to some of the community-based health care where a great – there’s greater access for younger children in some situations than for adolescents.
MS WRIGHT: Okay. And you say you’re not aware of any established comprehensive and evidence-based paediatric strategic health care plan currently in place in New South Wales or nationally for children and adolescents with IDD, intellectual or developmental disability, and you consider that there should be such a plan.
DR SMALL: Absolutely.
MS WRIGHT: Now, you’ve said that there are two pathways for care for children with IDD where concerns arise before or at birth or during early childhood years. Could I just ask you to explain what those pathways are?
DR SMALL: So some children, through the pregnancy or delivery, might be identified as being high risk of having intellectual or developmental disability, for example, a child diagnosed with Down syndrome, before or just after birth. And so they might be supported – they and their families might be supported through pathways that provide early intervention, care and support and connection with a wider network of families with other children with Down syndrome, as well as specialist medical care where that’s required.
For some children whose developmental difficulties emerge through childhood, which is quite common, they may be identified through screening programs, through vigilant early childhood nurses, through early childhood programs, such as preschool or child care. And their pathway to health care is typically via a general practitioner to a paediatrician. And that may involve developmental paediatrician or community-based health care.
MS WRIGHT: Now, with the transition from paediatric to adult services, you’ve said it’s recommended to be a formal planned and purposeful process. And is that a recommendation made by the College of Physicians?
DR SMALL: Yes, it is.
MS WRIGHT: And you say that the period of transition is a particularly vulnerable and an often challenging time.
DR SMALL: That’s correct.
MS WRIGHT: During which adolescents can fall through service gaps. And you consider that it’s likely that the young – the majority of young people with intellectual disability are not supported by a planned process of transition. That’s your experience?
DR SMALL: Yes.
MS WRIGHT: And they lose coordinated care at that point. So how do we address that?
DR SMALL: There are some examples of excellent coordinated care for children with developmental disabilities and other children with chronic and complex health care needs. I think what we need to do is to systematise some of these innovative programs so that they are accessible to the broad range of children with developmental disabilities. I do think children with developmental disabilities also start to disappear from contact with the health system through their childhood and adolescent years. And that’s a gap that I think we need to understand better both with research and reaching out to those people, as well, to better support them through their transition.
So one of the other difficulties is to have an appropriately trained and accessible and available adult health care sector, bearing in mind that the importance of the primary health care network, GPs, for example, remains critical to meeting the health needs of children, young people and adults with intellectual disability and their families. Their families need to be healthy, as well. But that adult health care sector, I think, is an identified gap for people with intellectual disability.
MS WRIGHT: And you’ve said in your statement that there are some key differences between the adult and paediatric services. And one is that the families of children are involved in the care to a greater extent than for adults. And you’ve also drawn attention to the shortage of general – generalist physicians for adult patients.
DR SMALL: Yes.
MS WRIGHT: Do you just want to tell us about that. Is it a matter of training more people? How should that be resolved?
DR SMALL: I don’t have workforce data readily available, but I’m sure that would be available if required. But it’s my understanding that, as we’ve heard earlier, there was a very strong trend towards separate subspecialist dominating the adult medical specialist workforce. And that was because that allowed for greater depth of knowledge and expertise in a narrow area that was important for the health – for those health conditions. But particularly with the growing awareness of chronic and complex health problems where those specialists are unlikely to be able to meet the range of needs that people will experience and effectively integrate the care, there has been a growing resurgence of general trained physicians.
However, in relation to intellectual and developmental disabilities, as I’ve already mentioned, as far as I know, there’s no training program or there’s no training opportunities for general medicine physicians who have an interest in training in intellectual disability. And I would also suggest there would need to be further skills and knowledge enhancement for those practitioners – for those medical specialists in relation to provision of high level specialised health care for people with intellectual disability.
But I think generalists – general adult medicine physicians are very well trained to step into this space with some added training and with some dedicated opportunities – funded opportunities for training, and then, of course, further funded opportunities – further funded positions to actually deliver that health care.
MS WRIGHT: And, given that there are particular risks attendant upon a person transitioning from paediatric care to adult services, will these new health – intellectual disability health multidisciplinary teams have any particular focus on adolescents or is that not part of the plan?
DR SMALL: As I’ve mentioned earlier, the model is primarily of a consultation model, rather than a long-term sustained involvement at which you might have specifically defined points of contact with people with intellectual disability. However, within the broader capacity building scope of these teams, I would hope that part of our influence will be to embed greater recognition of the vulnerability at these times and support development of programs and dissemination of resources that will improve the experience of young people with developmental disabilities. But it still is plausible that we may identify that that’s a significant gap and may need further funding enhancement.
MS WRIGHT: Are there any mechanisms for identifying these vulnerable patients who are moving from paediatric care into the adult system?
DR SMALL: There are some mechanisms where those young people have regular frequent contact with the paediatric health care sector, but if they are not in regular contact with the paediatric health care sector I suspect they probably fall through the gaps. I work very closely with some special schools for children with developmental disabilities. And they provide very holistic support for children and their families. And one of the roles that I’ve experienced these schools providing is anticipatory care leading up to the time the children will be leaving school. And part of their approach is to support transition.
MS WRIGHT: You also refer, in terms of addressing the gaps, to initiatives to integrate primary health care and specialist care. And you refer to the need, also, to have more shared models of care between disability and health services. Do you want to add anything to what you’ve said in your statement about integrating both primary health care, specialist care and – on the one hand and disability services and health services on the other?
DR SMALL: I’ve been practising this field as a consultant paediatrician for over 21 years. And that has spanned the introduction of the National Disability Insurance Scheme. I recognise that it’s provided much welcome opportunities for some people to be more integrated in the health – in their communities. And I really commend the NDIS for doing that. However, my experience and that of colleagues – and I’m aware Professor David Dossettor has written a submission on his experience – is that for those with more complex needs there’s been significant breakdown in existing relationships and partnerships, and to some extent ownerships and accountability for the needs of people with complex, chronic disability.
My experience in the past was that there were both ground roots at the front line, clinicians who would work effectively together, as well as higher level collaboration between government departments. And I’ve experienced a loss of that. My sense is that that’s occurring across Australia. It’s not just restricted to New South Wales. And I think there needs to be some very careful and deep thinking about how we may rebuild some of those bridges. When the new drivers within the NDIS are more about market-driven individual business models within the disability sector, I think that presents some challenges to re-establishing these lost partnerships.
MS WRIGHT: What is the reason for the loss of that collaboration between clinicians and services and government? Is it – you’ve referred to, for example, the Department of Ageing and Disability and Home Care, which used to be a unifying agency in New South Wales, to coordinate all of those services. Is that the reason, that there is no unifying agency anymore?
DR SMALL: I believe it’s multifactorial. I believe accountability that was delivered at a high level across governments in the past has changed with the introduction of the NDIS. The new funding model is a market-driven model in which health professionals are in the main excluded from being partners in how those plans are developed and implemented. So if I see a child who is receiving disability support through the NDIS, I don’t get information in the main about what is happening.
MS WRIGHT: What do you mean by that, about what is happening?
DR SMALL: So often what parents tell me is the name and mobile phone number of their therapist and very little else. I have more relationships with some of those people whose organisation I’ve had long-term relationships with, but there’s a breakdown in the information that can be shared. Parents of children I see jealously guard their funding for therapy and contact – face-to-face contact. And so they may not appreciate the value of the time and effort to build relationships and work collaboratively. That now is all costed and experienced by the parents who are needing to make judgments about how their money’s spent. And sometimes their funds are inadequate to cover their needs, as well. So I actually – I think it’s multifactorial.
COMMISSIONER SACKVILLE: Ms Wright, how are we going for time?
MS WRIGHT: Yes, your Honour. Perhaps I could just finish with the recommendations. Dr Small, you’ve made – you’ve identified at paragraph 89 of your statement and onwards five key areas of development, at both state and national levels, which you consider would contribute to the improvement of health care for people with intellectual disability. Would you – and you’ve provided to the Commission some recommendations for the Commission’s consideration. Is there anything else you would wish to tell the Commission about the improvement of health care for people with intellectual and/or developmental disability?
DR SMALL: I think that we must introduce high level accountability and really develop our urgent needs high level strategic plans that drive systems collaboration and systems performance that picks up all the issues that we’ve touched on and that other people have touched on. I think that’s an imperative. I’ve mentioned several times funding. I’ve – as I’ve mentioned, I think the new funding I’ve experienced through New South Wales Health is driving some new conversations and new accountability. And we won’t make changes unless there is that dedicated funding.
I think that there – obviously, we’ve talked about training. That’s an imperative. I think we need to systematise and implement effectively some of the potentially very effective new strategies and tools, such as those that Professor Trollor has talked about. And I think we need to effectively lever off those mechanisms and policies that already exist that don’t effectively pick up the needs of people with intellectual disability, such as strategies to address health inequities. We must ensure that people with intellectual disability are a recognised group with added vulnerabilities. Whenever there’s an approach to address health inequities.
That where there’s pricing for experiences in health care, such as those influenced by the Independent Hospitals Pricing Authority, that they appropriately recognise that the needs – meeting the needs of people with intellectual disability requires adaptation of funding beyond the standard activity-based funding, but all of the mechanisms that currently exist to extend and enhance how we meet the needs of people in the community that exist.
MS WRIGHT: Thank you, Dr Small.
COMMISSIONER SACKVILLE: Thank you very much. Dr Small, thank you very much for both your statement and coming and giving evidence. We do appreciate it. Thank you.
DR SMALL: Thank you.
MS WRIGHT: Commissioners, there’s just the matter of the other parties if they had any questions of Dr Small.
MS FURNESS: No questions, thank you, Commissioner.
MS MUNRO: No questions.
COMMISSIONER SACKVILLE: I assumed they would leap up and tell us. Thanks very much.
<THE WITNESS WITHDREW [3.47 pm]
MS WRIGHT: And, finally, I tender Dr Small’s statement and CV, as well as the supporting documents that she provided.
COMMISSIONER SACKVILLE: Thank you. Now, Ms Eastman, you will tell us what will happen tomorrow.
EXHIBIT #4-10 STATEMENT OF DR JACQUELINE SMALL DATED 12/02/2020 (STAT. 0053.0001.0001)
EXHIBIT #4-10.1 CURRICULUM OF DR JACQUELINE SMALL DATED 12/02/2020 (EXP.0014.0001.0232)
MS EASTMAN: I hope I can. So we’ve finished the evidence today. Tomorrow if we resume at 10 am. And then we will hear the evidence of a number of family members, who will talk to the Royal Commission about their experience. And in some cases their children will be with them.
COMMISSIONER SACKVILLE: So we shall adjourn till 10 o’clock tomorrow.
MS EASTMAN: If the Commission pleases, thank you.
COMMISSIONER SACKVILLE: Yes. We will adjourn till 10.
MATTER ADJOURNED at 3.49 pm UNTIL FRIDAY, 21 FEBRUARY 2020