Intellectual Disability Mental Health Hub- SIDMHOS transcript

​​​​Ella Darling Well, thank you, David and Jodie. Next, we will hear from Dr. Thompson. He used to be a mental health nurse and a teacher for children with intellectual disability. There are lot of nurses and teachers involved in this great work.

Rachel Spencer Yes, we've certainly discovered that a lot of professionals in this area have come from nursing and teaching background. And we've also discovered there's quite a lot of David's that work in this area. Dr. David Thompson is currently the coordinator of the Statewide Intellectual Disability Mental Health Outreach Service, affectionately known as SIDMHOS. And David, I believe, is joined by Dr. Clint Pistilli today, a psychiatrist also from the team, to introduce us to SIDMHOS. Thank you.

Dr Clint Pistilli: That was a tough gig to follow. Thanks, everyone. So, I, too, would like to pay my respects to the traditional custodians of the land. Good morning, colleagues from Health, minister members, carers, disability service providers, and, importantly, any service users of mental health care that may be tuning in over the internet today. Thank you for taking a moment out of your busy schedules to be here with us. Truly appreciate it. It is a privilege for me to be part of this historical moment in mental health care advancement in New South Wales for people with an intellectual disability.

As you have already heard, the two services being launched today and the policies that back them are truly the first of their kind in New South Wales. As a brief side note, I wish to acknowledge the resolute efforts of Professor Trollor and the team at 3DN and Associate Professor Dossetor and the Children's team at the Westmead Hospital. Both have contributed immensely to clinical research and policy change in this area. If it is not already apparent, historical occasions like this would not have occurred if not for their contributions. I wish to also thank the executives at the Sydney Local Health District for their immense support with helping us develop this service, Dr. Teresa Anderson, Dr. McDonald, and Dr. Lim-Gibson. Not sure if she's here today but thank you very much for helping us develop this. The landscape of services and supports for adults with intellectual disability has vastly changed over the last 20 years, and even more so in the last five. Community-based living has come to be, has come to replace the large-scale residential facilities and options for community access and participation has flourished in recent years, undoubtedly improving the quality of living for many adults with intellectual disability.

The introduction of the National Disability Insurance Scheme has further provided the impetus for a national approach to disability social reform and further safeguarding the risks of abuse of people with intellectual disability who access disability services. However, health reform for people with intellectual disability, particularly mental health care service reform, has lagged behind, such that we are seeing an increase in demands for access for mental health services as disability providers and carers struggle to keep up with the support needs of the more complex clients now living and regularly participating in our communities. In part, access to mental health care for adults with intellectual disability has history been limited by an uneven distribution of qualified clinicians and specialized services in psychiatry. ADHC provided some buffering to this unevenness, funding additional clinicians to deliver care in areas of need. However, with the devolution of ADHC, this unevenness has been magnified. Contributing further, there has, at times, been fragmentation of health services due to differences at the local levels, differences in culture and policy, funding, training and education opportunities, and, more broadly, some limited coordination between those existing specialist ID services which have tended to operate in isolation from one another.

 The Sydney Local Health District, where I both trained and continue to work as a consultant psychiatrist, has, in a sense, been one of the more fortunate pockets of New South Wales, and indeed, Greater Sydney. When it comes, this is when it comes to accessing mental health care for adults with an intellectual disability. I say fortunate loosely here because it is not by chance for the district but rather has arisen from a decade's worth of investment at the local level. It was the foresights of a few champions who understood the consequences of not proactively addressing mental health care of adults with intellectual disability. Higher rates of hospitalization, longer time spent in hospital, carer burnout, accommodation breakdowns, and the impact on the community at large. The consequences are far-reaching and systemic. The fruits of our efforts at the local level is that the Sydney Local Health District now has a fully established specialist ID mental health service as well as a specialist health team, the ability to train and produce specialist clinicians, as well as the development of strong ties with our local disability service providers and clear pathways for access for local service users. Similar examples I know exist in other LHDs and whilst we should celebrate these achievements, equally, we need to aspire to do better across the board. Pockets of privilege access should not exist within the public health system. This is why, with the important announcement of the funding by the state government with a vision to deliver equitable statewide access mental health care for individuals with an intellectual disability, the Sydney Local Health District will be expanding its local service and implementing the adult hub. Using a hub-and-spoke model of care, the adult statewide service, as a multidisciplinary team, will act as a hub to deliver training, education, and outreach specialist consultation to our colleagues at other health districts across New South Wales who will form the spokes of the model.

With this training and clinical support, it is our hope that, in turn, we can assist other districts to build their capacity to deliver specialist mental health care for adults with ID at the local level. The hub will operate at a tertiary level, accepting referrals from other district mental health services, community and in-patient mental health units, as well as psychiatrists based out in the community. We'll be offering opportunities to collaborate and support our primary care colleagues, GPs and nurse practitioners out on the front lines, such as through our Project ECHO initiative, which will be elaborated on shortly. We'll be leveraging off the already-expanding use of telehealth technologies to reach our colleagues in regional and remote areas of New South Wales as well as offering face-to-face consultations based out of our Croydon Community Health Centre for those willing and able to travel to Sydney. The aim will be for adults with intellectual disability to receive mental health care at the right place, at the right time, and delivered by their local health providers who they know and trust. Whilst, undoubtedly, the need for specialist ID mental health services will always exist, the aim will be to move away from the historic reliance on a few concentrated specialist services towards building broader capacity within the mainstream mental health system.

And this is truly at the heart of disability reform. A move away from segregation of services in towards integration. A move from exclusion towards inclusion. A move that's being paralleled in our education, workplace, and community systems.

So, in a moment, I will hand over to my colleague, Dr. David Thompson, who's our coordinator, who will provide some further details about the inner workings of the adult statewide hub and how to access care. Before I do, I'd like to leave a quote that I strongly empathize with from Gandhi: In times to come, the greatness of a society will be judged by how it treats its most vulnerable people. Thank you.

David Thompson Thank you, Clint, and as you said, I'm just going to explain a bit about the service and how you can access it. So, first of all, this is the rest of the team.

So, from left to right, we have Ji Sun, who makes Project ECHO happen, Sarah O'Brien, who's our clinical neuropsychologist, Clint, then Emmy Yiannopoulos, who's our clinical psychologist, me, and Dr. Rebecca Koncz. So, we're all here today, I'm pleased to say. So, like the children's hub, there's two main parts of our service. There's our kind of direct clinical work with individuals and their support providers and then our capacity-building work, and so I'll talk to those in turn. So, first of all, our specialist consultation for adults with intellectual disabilities.

To be eligible, people would have to be adults. If people are 17 or 18, Jodie and I will talk, and we'll work out which service is going to make sense. And what we're looking for are people where there are concerns about their mental health or behaviour and that's really negatively impacting on their lives and those people around them. It's very important to say that we don't draw a line between behaviour and mental health. We're about if there are concerns. I know some services, what they'll do is say, "It's behaviour. It's not mental health." First of all, congratulations on being able to work out that distinction. And, you know, so we're trying to be inclusive of that. And unlike the children's services, we don't take over care. We're about supporting clinicians who are working with the individual and so there needs to be a team that's going to continue to work with that person. And, of course, consent is important, ideally from the person themselves or their person responsible or guardian. And what we're doing is really prioritizing those people who don't have access to other specialist services.

 What's really good is in addition to our services, there's the Specialist Intellectual Disability Health Teams across the state and they're very often able to provide really excellent support. So, we'd rather people go local first and if those services are unable to provide support for whatever reason, that then people come to us. And also, there's a range of intellectual disability mental health services currently in the state which are, again, providing excellent support. So, one of our things we do is when people phone up is, "Have you tried the local service first?" You know, it's not we're not wanting to help you but obviously we're very keen that you use those services. So, like the children's services, we have a pyramid. We won't claim who copied who. So, at the lowest level, it's information and advice, and so people calling up, "I've got this concern," and, really, that's often about signposting people to local services. The next level, it's a case discussion. So that could be maybe a behaviour support practitioner who's working with an individual and they're looking for some ideas about how to support them. Then the two top levels are kind of joint case conferences and we've done quite a lot of these now where there's a lot of people in the room via Zoom, really, and we're talking about the person and really exploring maybe other ways of supporting them. And then the top level is, that's when we actually meet the person. That sounds like really bad that it's only rarely we meet the person, but obviously that can be very overwhelming. There's lots of good reasons why the local people are the best people to talk to the person and maybe we come in and provide some advice. Important to say the top two layers, generally we do need a psychiatrist involved in that referral because often we're talking about psychiatric treatment and psychiatric care and we need a physiatrist who can actually kind of follow through those recommendations.

I think it's fair to say one of the challenges is that some adults with intellectual disabilities really struggle to access a psychiatrist either in both the public sector or the private sector, which is a real barrier to accessing our service and we'll have to think ways of managing that. So once people are referred and we have a case discussion or joint case assessment, what we offer is a comprehensive report that's multidisciplinary that covers the service and support planning, and that includes the NDIS and accessing the many benefits of that, people's healthcare, people's medication and other psychiatric treatments, and psychological and behavioural support. They're long reports. What we've done is look out our early referrals really for us to see if we can learn lessons to see if we can improve the service we provide to individuals and their health professionals. I won't read the quotes but there's some positive signs from that. That's definitely true. But I think that has to be matched, that although there's been positive change for some of the people, there's lots of people are struggling in their lives to get security and accommodation and getting kind of secure support and secure healthcare. So, it's not a picture where everyone's in a great place now. People's lives are complicated and that's not going to change overnight. And I think it's also important to recognize that these kind of specialist services, it's very easy to write the report. What's very difficult is for that to transfer into change for people and to improve people's lives. That's always going to be a challenge, yeah. So, we'll have to carry on with that. So that's our kind of direct work with people.

 The other side is our capacity building and we're doing it under the brand, Project ECHO. And Project ECHO, ECHO stands for Extension for Community Healthcare Outcomes and it was developed and is supported by the University of New Mexico, which is in Alberta. And the only thing I know about Alberta is that "Breaking Bad" was in Alberta. So, I'm very excited about Alberta. But apart from that, it's evidence-based training for health professionals. So, they've done the work. They know this makes a difference. It does really help professionals develop their knowledge and skills. So, in Sydney Local Health District, there's been a very strong commitment at executive level to use Project ECHO both locally and across the state, really. So, we're not the only Project ECHO in Sydney Local Health District. There's a Statewide Adult Eating Disorders program that people can find out about, we've provided local Project ECHO around general mental health, and ours is the third current, but hopefully there will be more of these Project ECHOs as we go forward into the future. So, Project ECHO is weekly sessions by Zoom. Ours last 90 minutes. And they had Zoom before COVID, Project ECHO. So, they were ahead. And really, again, I think, as Jodie said, we're really lucky that, actually, people are really getting used to learning through this way and it's really helping reach. It's free for participants. It's open to a wide range of health professionals and what it is, basically, there's a formal presentation about one aspect of the mental health of people with intellectual disabilities and then we have a case discussion that one of the participants bring forward that's usually complex. And the participants and those of us on the kind of hub, we say, "Well, have you thought about that?" Really. And people will get a report. And because this is new to us at Sydney Local Health District, we are evaluating it and we have ethical approval for that. So, a bit of a picture of who's coming to our Project ECHOs. What's really great is about 50% of the people who are coming are Local Health District staff, either in-patient staff or working in community mental health services, and the others are working in lots of different organizations, NDIS providers, behaviour support practitioners, social workers, which is really good because we really want that multidisciplinary kind of component to this learning. Obviously, we want more of some people and it'd be great to have some more doctors. But obviously, yeah, it's a challenge for lots of people to give up that time.

So, this is some early evaluation findings. So people have kind of a questionnaire to fill in before they start the series and when they end the series and those people who complete it both before and after, which is not everyone cause it's not everyone's favou​rite thing to do, fill in a questionnaire, what we're seeing is that most people are saying they've increased their knowledge and they've increased their confidence working in these areas, which is really good. And even though we've only got 17 people to date who've filled in both forms, it's really good to get those numbers. It's very encouraging. And again, some feedback from some of the participants from Project ECHO. And I think it's really good that the ministry is supporting kind of formal evaluation of the whole program, including Project ECHO, with 3DN and University of New South Wales. So that'll be really helpful to see, really, to make sure both the children's hub and the adult hub really are making a difference to people with intellectual disabilities, their families, and carers. And our contact details if you want to make referrals or want to join our Project ECHO. You'd be very welcome. Thank you.

Rachel Spencer Thank you, David and Clint. What really stood out for us is that both the Sydney Children's Hospitals Network and SIDMOHS, while you are within a medical space and providing specialist medical services, we can really see and hear, I guess, your foundations and principles come from a human rights model, which really makes us human rights advocates very pleased. People with intellectual disability and mental health are rights bearers first and foremost and just part of human diversity. People have the right to good health and healthcare, the right to be included, and the right to respect and dignity. And so, we thank you all for sharing and particularly to Timothy and Lachlan and their families, who I'm sure you will agree shared, I guess, such an intimate and personal journey and really brought home the valuable work that happens in this space. So, our final speaker today is Vince Ponzio. Vince is from the New South Wales Ministry of Health Mental Health Branch and leads the wonderful team Ella and I have worked with in the reference group that we spoke of at the start and also to make today happen. Did you want to thank someone too?

Ella Darling Oh, yeah, thank you, Amy. We really appreciate what you have done today. So, thank you again.

Rachel Spencer And so, we'll now invite Vince to wrap up today.