Rachel Spencer Thank you, Minister Ward, for your words, and all the advocacy that you do in the disability space. So, Ella, next, we're going to hear form a good friend of CID, Professor Julian Trollor.

Ella Darling  Oh, right.

Rachel Spencer You can introduce Julian.

Ella Darling Hey, Julian. Julian has worked for New South Wales. He's just worked for... Oh my god.

Rachel Spencer So let's just go back here.

Ella Darling Okay.

Ella Darling That's okay. He's from the UNSW. Julian has worked in the field for many years and has a lot of roles. He's a doctor, teacher, and a researcher, and he works for the government. He mostly is all work, important health and wellbeing for people with intellectual disability.

Rachel Spencer That's right. His work is all about improving health and wellbeing of people with intellectual disability. And Julian certainly works with government, probably not so much for government. But Julian has lots and lots of positions. So I'm going to also introduce Julian. He's the inaugural chair of the Intellectual Disability Mental Health at UNSW. He's the head of the Department of Developmental Disability Neuropsychology, also known as 3DN, at UNSW. And he works at South East Sydney local health district. Welcome Julian.

Professor Julian Trollor, Chair in Intellectual Disability Mental Health Thank you so much, Ella, for that really warm welcome. It's so nice to have both you and Rachel representing Council for Intellectual Disability here today. Could I just check the microphone is on and working? Great, that's fantastic. I too would like to acknowledge the traditional custodians of the land on which we stand today, elders past and present and emerging. It's an incredible privilege to be here today. I'd like to acknowledge the Honorable Bronnie Taylor, MLC, minister for mental health of course, regional youth, and women. And the Honorable Gareth Ward, MLA, our minister for families, communities, and disability services. I'd especially like to acknowledge people with lived experience of disability, and of course those who support them, including supporters and professionals within the healthcare context, which is the main reason we're here today, and those watching online today. I'd like to thank the mental health branch of New South Wales Health for asking me to set the scene today. And in setting the scene, I like to offer both congratulations to the services, but also, I'd like to talk about the challenge that lies ahead in this really important area.

Well, first, today marks a really important milestone, doesn't it? The launch of what I think are just exemplary services at a statewide level that will provide the highest level of mental health support for people with intellectual or developmental disability in New South Wales. I think the minister, her support, what I think is a critical piece of the puzzle here. And for ensuring generally in our state that the mental health needs of people with intellectual developmental disability are given the priority they need. I congratulate Associate Professor David Dossetor, Jodie Caruana, who we'll hear from later, and all of those involved in the Sydney Children's Hospital network, Mental Health Intellectual Disability Hub, represented over here, the shorter of the stands, quite appropriately as Jodie talked about, because it's a service for children and younger people. The drive and leadership and contribution from the team that David has run has been incredible, and substantial, and sustained over many years, and this is yet another achievement. And I congratulate them. They're all old hands at this, but they do it so well. It's equally pleasing to see a new generation of leaders in the field of intellectual disability mental health take on the responsibility for the state-wide intellectual disability mental health outreach service, a service for adults, represented by the slightly taller stand to my left. Dr. Clint Pistilli and Dr. Rebecca Koncz and I go back some time. It's been truly inspirational to see their professional development, and to see them take on with Dr. David Thompson and others the responsibility for shaping this adult service.

I'd also like to acknowledge the groundwork done for the tertiary services in the series of scoping studies done by my staff members at 3DN, Dr. Janelle Weise, Ms. Claire Eagleson, and Dr. Rachel Cvejic. Their work at 3DN has provided the much-needed research and the groundwork for the services that are launched today. But I wouldn't be doing my job, and I wouldn't be being myself if I stopped here at the congratulations. That's because of the enormity of the challenge we have a head of us, and that's intimately connected with why we're here today and why we have tertiary services. Let me explain.

The Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability recently made a substantive finding. They said in the interim report, and I'll quote, "The evidence justifies the Royal Commission finding that people with cognitive disability have been and continue to be subject to systemic neglect in the Australian health system. We make that finding." Evidence provided by people with intellectual developmental disabilities and their families and professionals and academics, many here, and watching today led to that conclusion. So, our challenge has to be future-focused. And working together, we can try and strive to the highest attainable standard in mental health and wellbeing for people with intellectual developmental disability. And UNSW's 3DN, our research and that of others consistently highlights the enormous health gap for these populations. The gap's systemic and it's pervasive across mental health, physical health, preventative and primary healthcare, end of life care, primary care, and access to appropriate and tailored treatment. The gap is so substantial that frailty has its onset about 25 years earlier in people with intellectual disability. It's so substantial that people with intellectual disability die 27 years younger than others in New South Wales. It's so substantial that people with intellectual disability experience double the proportion of potentially avoidable death that the general population. Mental health is an independent and major driver of the frailty and premature deaths. In our recently released paper on factors related to death, after we accounted for all other factors that might drive or be associated with death, having a hospital admission for mental health condition increased your risk of death 4 1/2 times. This is because of the compounding effects of mental health on physical health, related to the illness itself, the lifestyle related factors, and the treatments for mental health conditions.

So, it's really pleasing to see that for those with the highest level of need, we have this substantial and strategic investment by the New South Wales government. However, from those statistics, you can tell that much more needs to be done, and we must be future-focused. So, what are the buildings blocks on which we must build that new system? From my perspective, I think we can fit them into six different categories. Health services delivery, health workforce, health information, technology, financing, and finally, leadership and governance. Applied specifically to the mental health services system, improvements in health services delivery will only be possible if we take seriously the need for reasonable adjustments. That is accommodations made to ensure that people with intellectual developmental disability have access to and are supported in their mental healthcare. From the perspective of a researcher, academic, and clinician, I feel these adjustments should be mandatory. They are in some jurisdictions internationally. Mandatory too should be the provision of accessible information and training for staff in order to know how to use accessible information, because currently that's a big gap. We also need to ensure the development of appropriate mental health services and service models. Now New South Wales has led the way in this area with the development of the services framework in about 2009-10, publicly released though in 2012, which outlined a backbone for a services model. And today, we're witnessing the launch of a tertiary service, one of the components of a very top tier of that model, which of course is very important for people with the most complex needs. But what about the rest? Access to specialist mental health services goes well beyond that, and most of it needs to occur in the mainstream mental health services system, which of course require equipping, and they require development of clearly identified clinical capacity and clinical care pathways, and these in turn need to be integrated with what the person receives in their community, from their primary care services and community mental health.

Well, what about in terms of workforce? Well, here there's a huge gap. We know there's a huge gap in undergraduate medical and nursing curricula, but we also know there's a huge gap in our existing health workforce. So those staff require training and equipping. They need the necessary skills, confidence, and the right attitudes in their approach to people with disability to prevent the kind of horror stories that we heard about in the Royal Commission hearings. And without mandatory training in that area, I think we'll see little progress, and I'm an optimist. In terms of the health information, I think there are two key areas to address. One is to ensure that we have good data capture and reporting systems in New South Wales Health, so that we can adequately identify people with intellectual developmental disability and report outcomes and experience with care. Another really important part of that puzzle is a disability resources hub, with resources that are accessible to people with disability and families, and accessible to professionals across the disability and health divide, a one-stop shop where people can go and finds the resources they need to improve their clinical care, but this awaits investment and development. Well, what about medical technologies? We need to ensure that people with disability are actually a priority group, not an afterthought in adoption of new technologies.

An example of what I'm speaking about is a project that I've had the privilege of being involved with recently with Black Dog Institute. It's a project where we developed an accessible web-based mental health treatment tool for people with mild levels of intellectual disability. It's called Healthy Mind, and we're currently doing a clinical trial to evaluate its efficacy. Another recent example is a web app that we launched called MySigns, which allows people with disability and those who support them to bring together visual and video information to describe the mental state of the person when they're struggling to describe it words, and to document how that changes over time with treatment. Next is a building block of investment.

Of course, nothing happens in healthcare without investment. But as health and wellbeing of people with disability is a shared responsibility across both disability and health services, investment is needed from both sectors. Investment should represent an equitable share of the budget, reflecting the needs of the population it's designed to serve, and it should be available to specifically target initiatives for that population. Our prior work in this area shows that 12% of the New South Wales mental health budget is currently required to meet the mental health needs of people with intellectual disability in New South Wales. Further investment and comprehensive tailored services have the potential to transform the statistic, remembering those people represent 1% of people within New South Wales, but they require 12% of the mental health budget currently. Investment will transform care and improve efficiency of care for people with disability. But more so, it will improve the experience of people with disability who currently experience difficulties. And finally, we come to the domain of leadership and governance.

To move forward, we need clear leadership in health and disability policy to ensure that the specific needs of people with intellectual and developmental disabilities are included in national state territory and all policies and plans, and that requires input from people with disability and those who support them. Health and its intersection with disability services should also be considered so it's important that we embed health-related aspects in disability policy and regulation, and in the equipping of the workforce. Of course, investment strategy has to be informed by evidence, don't they? We need rigorous, and inclusive, and collaborative research, which tells us about the health needs of people with intellectual and developmental disability in which partners with them and with agencies in government in implementing the findings of that research. Investment and research are therefore critical, but much overlooked nationally.

I feel really fortunate to have had the privilege of being at UNSW and leading initiatives in this area over the last 12 years, and that's only through the support of the strategic investment of the New South Wales government. With more investment, we could of course do more, and that's very much what I'm encouraging. I think that I need to work hard to secure future research funds, but I look forward to thinking about how we can use them and collaborate with these two specialized services. So, in setting the scene, I don't mean to bring it down. I mean to raise it up. We have two incredible services being launched today, and those services are a critical piece of the puzzle, and I feel very much that they will take things forward in the right way. I see a lot of room for praise. I'm seeing New South Wales leading in this area, and I see there's a hive of activity in innovation. But the challenge ahead can only be addressed if we consider, I think, actions at each of the six key areas that I've mentioned. I see the statewide services is having a really key role in those domains, and therefore a key role in helping us meet those various challenges, but I have no doubt that they're up to the challenge. Thank you.

Current as at: Friday 4 June 2021
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