Ella Darling Thank you, Julian, that was very interesting. There has been a lot of people working in the field for a long time. Julian has been in a team with CID for many years.Rachel Spencer Julian and CID's research and advocacy has certainly highlighted the need for mental health services for people with intellectual disability. One of Julian's priorities is always ensuring that people with intellectual disability and their families are front and center of the work. And so, I know he'll appreciate the next part of today's launch. So, we're going to have a short video from the Sydney Children's Hospital Network, Mental Health and Intellectual Disability Hub. And we thank the families involved for sharing their stories. We're then going to hear from the Sydney Kids Hub team members, Dr. David Dossetor, a psychiatrist who has a special interest in intellectual disability and autism and Jodie Caruana who is the coordinator of the Sydney Kids Hub.Dr David Dossetor Good morning, ladies and gentlemen. Firstly, I'd like to acknowledge the traditional owners of this land. I should also like to acknowledge the young people with a disability and their families. Many of whom I've come to know and respect so highly. This launch is a milestone in my career and important step in integrating the mental health needs of children and adolescents with intellectual disability and autism into mainstream mental health.
When I first worked with children with intellectual disability and severe and complex emotional behavioral servants, many of whom were living in an intellectual disability hospital. It was 36 years ago in Leicester before they were transitioned to community care. Even in UK, I was the first of a significant carder of child and adolescent psychiatrists who trained in the subspecialty interest in intellectual disability and autism. In the 30 years I've been at the children's hospital, this area of specialist service provision has slowly grown providing equity of access in 1991, being funded for a clinical psychologist to work in mental health of children adolescents and intellectual disability autism in 2004 and 2008. With these positions a small clinical team formed and our intervention research on Westmead Feelings Program and emotional learning for autism grew. Between 2000 and 2014, we had a partnership service provision between state disability services and our team and provided the only interdisciplinary interagency tertiary clinic in New South Wales, interdisciplinary training around the state and published the first evidence-based textbook. In 2009, we were funded for School-Link which focused on the mental health liaison training, early intervention and pathways to care for this population in partnership with disability in education.
I'm proud of our subspecialty journal free to access in its 12th year and 27th edition. A few copies are available outside. I feel sure that the NDIS will inevitably at some stage realize that they need to work closely and collaboratively with us and all mental health for the sake of the children and young people with complex needs. I also feel the inclusion of the psychiatry of intellectual disability has already done much to enrich the skills and understanding of mainstream psychiatry.
As these days, all mental health clinicians have to consider the importance of the biology of development in addition to the course of experience as simplified in this slide. Such that all mental health clinicians have to integrate developmental neuro psychiatry in mainstream mental health service provision.
Today, I'd like to introduce the members of the Sydney Children's Hospital, Mental Health Intellectual Disability Hub. We have Vinita who's here, a child psychiatrist, Stella, clinical psychologist also here, Nicolette who's an occupational therapist, Tania, a social worker and last I'd like to introduce Jodie Caruana who is our team coordinator and has been the head of our School-Link project for the last 10 years. So over to you, Jodie.Jodie Caruana: Thanks, David for outlining the history of our service and also for being such a magnificent leader in the space of mental health and intellectual disability of children and adolescents. It's so exciting to be part of this new milestone even if sometimes I feel a little bit like an octopus with my varying roles. I'd also like to thank our other staff members, Veena Raghupathy and Phil Ray and others in the developmental psychiatry team within the Department of Psychological Medicine at the network who have been instrumental in getting the service up and running and are constant support in the running and the support of our team. I also wanted to acknowledge some of the other services that we work quite closely within the network.
So, we've got the School-Link initiative, the Child and Adolescent Psychiatry Telehealth Outreach Service, the NDIS Transfer of Care Project and the Child Development Unit. So, before I outline our service, I thought it important to highlight why our service is needed for children and adolescents. And we heard a little bit about the broader picture with the general population, but I thought I'd home in on children and adolescents within an intellectual disability or autism. So, this slide illustrates how they are almost four times at risk of mental health disorders than the general population. And to give you an idea of how many children in New South Wales that we are talking about, there are approximately 56,000 children in New South Wales with an intellectual disability and with the prevalence rate of 41%, approximately 23,000 children in New South Wales will experience mental health problems. It also highlights that children with autism who may or may not have an intellectual disability are at an even greater significant risk. In the UK 14% of CAMHS clients have an intellectual disability. And if you include autism, that figure increases to 25% but they only comprise 2% to 3% of the population.
Children with intellectual disability and autism have many coexisting health conditions. Mental health, we feel is such a worthy investment as this component can be improved as we work together towards recovery and as the video, we just saw highlighted. And as I think we've heard today; we really want to make lives better.
So, the aim of our Mental Health and Intellectual Disability Hub at the Sydney Children's Hospital Network is to improve statewide access to specialist mental health services for children and adolescents with complex and or atypical mental health problems and developmental disorders. And we've got this second aim of enhancing the capacity of local services to provide mental health care within mainstream and subspecialty services. And I'll briefly outline how are we going to achieve that. But first a little bit about the nature and scope of the Hub. So, we work with the most complex patients and their care networks. As you can see from the figures, we can't see everybody in New South Wales. So, we do only see the most complex patients. We are a short-term consultation service. And as David mentioned, we want to see new cases. So, we have to keep that interaction short. We support and provide advice to patient's local treating medical clinicians. We become involved when a medical professional or mental health team have made a reasonable attempt or treatment attempts. So, we'd like the local services to try to treat these families first. We also share our expertise in assessment, diagnosis and treatment as David mentioned the history a little bit earlier. But we'd just like to highlight that the responsibility for treatment, case management and ongoing care will always remain with the patient's referring medical clinician.
So how do you get into the service? We need to see children obviously and adolescents under the age of 18 years cause the adult services those over 18 years, have a diagnosed intellectual disability or autism spectrum disorder, have co-occurring mental health issues and complex needs and or atypical presentations, have an existing primary treating clinician or team providing ongoing medical care, if a referral to local community mental health services has been explored and are already engaged with local disability services such as those provided by the NDIS and in particular behavior support services. So, what does our service model look like? Our first level of service is joint consultation with the referrer, patient and family or carers to provide assessment diagnosis and short-term treatment. As I mentioned, it's limited to one to three consultations, so short term, and can be provided either face-to-face at the children's hospital at Westmead or via telehealth.
Our second level of service is clinical consultation. And this I guess is more commonly seen in our service with the patient and family members or carers to provide assessment, diagnosis and short-term treatment and then we provide advice to the referrer. This is once again limited to one to three consultations and can be provided face-to-face or via telehealth. So COVID-19 has led us to rely heavily on video conferencing which has been a win-win for both clinicians and families as it has improved the equity of access across the state. Our third level is case-based discussions to a referrer of via telehealth. This may be a discussion between a Hub psychiatrist and the referring doctor, or a Hub allied health clinician and the treating allied health clinician. Our fourth level of service is referral pathways over the phone. So, lots of phone advice there. And our fifth level is capacity building and professional development opportunities for clinical staff wishing to increase their skills and knowledge on assessing, diagnosing and treating children with intellectual disability or autism.
So how can I refer into the Hub, I might hear you ask? Well, referrals may be accepted from New South Wales from pediatricians both in the community and in private practice, child psychiatrists both in community and in private practice, CAMHS or Child and Family Health Clinicians seeking advice or case discussions. So, both the referral form and the service brochure are available on our website. Our referral process is displayed here whereby by our referral form is sent to and reviewed by our lovely intake officer, Natalie. It is then reviewed by the team in our weekly meeting and we then go on to decide. If we do not offer a clinical consultation, we will endeavor to provide useful feedback to assist the referrer in the management of their patient.
I just have a few examples, very brief, about particular cases that we may see through the Hub. So, in this first example, a CAMHS psychiatrist referred a 10-year-old girl with ASD, ID, anxiety, depression and increasing self-injurious behavior who had shown no recent improvement under their care. So, in an initial joint assessment and two follow-up sessions with an allied health clinician, the patient and the family. Our second example. A 12-year-old with ID and severe ASD presenting with increasing obsessive behaviors was referred by a community pediatrician. The Hub team firstly provided an urgent medication review with the referrer and then three subsequent telehealth sessions with the child and family with case management being maintained by the pediatrician. In our third and last example, a referral from a private pediatrician for an 11-year-old boy experiencing psychosis. So, the Hub assisted the pediatrician to make a referral to the youth psychosis team for ongoing psychiatric management given that we do not see cases on an ongoing basis.
For our second aim of capacity building, we are hosting a Mental Health and Intellectual Disability Hub kids' webinar series that is available on our website. A series of live webinars are delivered once a month to any clinician in New South Wales who would like to learn about mental health assessment and treatment in children and adolescents who have intellectual disability or autism. We've been so excited today by the interest to date with the number of registrations reaching about 500 participants for each session. Once again, we have COVID-19 to thank for this, the transition to webinars. This is a list of some of the on-demand webinars that we have on our website to date. And this is a sneak peek at our 2021 timetable which we will distribute shortly. A second capacity building initiative includes the paid scholarships for clinicians across New South Wales and the Steppingstone Triple P or the Westmead Feelings Program, two evidence-based interventions targeting children with an intellectual disability and or autism and their carers. Over the next two weeks we'll be training 40 clinicians across various LHDs to be facilitators of Stepping Stones Triple P to parents of children with developmental disabilities. Shortly we will be advertising scholarships for clinicians to be trained as facilitators of the Westmead Feelings Program, a 16-week mental health promotion, intervention and emotion-based learning program for children aged eight to 12 years old with autism spectrum disorder and a mild intellectual disability.
So please check our website for future announcements. In finishing, we would like to encourage professionals to watch our monthly professional development webinars and to access our resources. 1,500 clinicians have already accessed our website in search of these. We encourage mainstream mental health services to refer their complex cases like Timothy and Lachlan who we saw in the video so we can collaborate together to make a difference for children with intellectual disability and or autism. We hope our enthusiasm to help these families will help build our relationship with local services.
Although we are a new service enhancement for the Sydney Children's Hospital Network, we feel that we are fully functional and look forward to the evaluation process with Julian Trollor and colleagues. Finally, I just wanted to add an extra thank you to the courageous families who we filmed last week only, and we did not give them any information. That was all coming from the heart. And I just think they're just so wonderful in giving their time. And it's families like that that really motivate us to come to work every day and do the work that we do. Just our contact details. Thank you.
