 Hello, welcome everybody to tonight's webinar which is the third in our webinar series between MHPN and Emerging Minds and tonight we're going to be talking about working to support the mental health of children with an intellectual disability. So welcome to the 564 of you who are currently tuned in to us and I really also want to welcome the viewers who are watching this through a podcast. Welcome everybody and thanks to your enthusiasm and for tuning in tonight. Emerging Minds and MHPN which is to acknowledge the traditional custodians of the land across Australia upon which our webinar presenters and participants are located. We wish to pay respect to elders past, present and future, for the memories, the traditions, the cultures and hopes of Indigenous Australians. As I said, welcome to what is the third webinar in series 2 and we along with MHPN are really looking forward to both bringing you tonight's webinar but also an exciting series that we have coming up and that includes the next available webinar which will be later in April which is supporting trans and gender diverse children and their families. The next one after that will be Aboriginal children and the effects of intergenerational trauma and engaging children and parents affected by child sexual abuse. So we hope you'll stay with us for those as we go across the year. So as I said, Manukdan Moss and I'm the Workforce Development Manager at Emerging Minds, really always a pleasure to be able to facilitate these sessions. Just a word about the platform. This is a new platform for many of you and you'll notice that some of the navigation buttons have changed. So just a reminder about the function. So access the chat box and please do click on the purple button. If you have a question and we always love to get your question so that we can make sure that what we're talking about is relevant to what you need, please use the blue button. Slides and resources are available from the light blue download button. The refresh button is the green button. And there's also a help button if you need IT assistance and you can message RedBuck directly or ring them on 1800 733416. OK, so we've got some learning outcomes that we want to cover with you tonight. So the webinar's completion, we would like you to be able to identify the risk and protective factors for children where they have an intellectual disability. We'd like you to describe best practice of collaboration with families and children that achieve positive social and emotional wellbeing outcomes for children with intellectual disability and to describe tools and tips for assessing, recording and reporting the mental health concerns in children with intellectual disability. So there are learning outcomes. And next up, it really is my pleasure tonight to be able to to be able to introduce our panel. And first of all, first of all, I'd like to introduce to you Emeritus Professor Stuart Einfield, who is a psychiatrist from New South Wales. Stuart, thank you so much for joining us tonight. You've got a long history as a psychiatrist and as an academic. Can I wonder if you could just tell us a little bit about some of the progress that we've made in working with children with intellectual disability over the years? Well, I think one step forward is that there's a much greater acceptance of the need for mental health intervention with children and families who have developmental disabilities. So while we've still got a long way to go in terms of service access, I think it's done questionably much better than it was. You know, when we started, autism was hardly heard about today. It's, you know, you can't avoid reading about it and developmental disabilities, you know, it's commonly discussed. So I think increased awareness is one. I think we've got a much better understanding of the some aspects of the biology and the brain function than we than we used to have. And I think we've got better assessment tools and better intervention monitoring tool. They would be to me the probably the main advances. Thank you for that, Stuart. We're really looking forward to hearing you speak tonight. So thanks again for joining us. Next of all, it's also my pleasure to be able to introduce Dr. Janina Shinla, who's a clinical and educational and developmental psychologist from New South Wales. Janina, welcome. In your long history of supporting children and families, can you tell us what are your understandings of intellectual disability that have been most helpful for you? I think I would go back to the importance of thinking of each child as an individual, regardless of what their diagnosis may be, because although a diagnosis may give you some sort of shortcut measure of understanding some of the challenges that the child may face, each child is different. So I think when you're looking at supporting a family or supporting a child with an intellectual disability, it's important not to sort of get blinded by the label and still think about the fact that you've got a child with behavioral, emotional, mental health support needs. And that child is within the context of a family. So I think that's probably the thing I always come back to. Thanks so much for that, Janina. I really appreciate that. And again, we're really looking forward to hearing you speak shortly. Thank you. So we're going to start tonight's presentation with Shua. But before we do, just a reminder about the case study, which hopefully you've had a chance to read. The webinar is going to focus on Noah, who's a nine-year-old boy. He lives at home with his mother, Amy, father Ray, and a 10-year-old sister named Jessie. So as the case study goes along, Noah has a moderate intellectual disability, as well as some issues with the epilepsy and ADHD. So to first give us a bit of a background into how to be working with children and their families with intellectual disability, I'm going to hand over to Shua. Shua, welcome again. Thanks. Okay, so I think it's good that we have as the first point here this issue about, you know, what are we talking about when we're talking about mental health problems? There's been a lot of confusion, especially about attempts to distinguish behaviour problems from mental health problems or psychiatric disorders. And the point I would like to make is that there is really no valid distinction between behavioural and emotional problems and mental health problems or psychiatric problems. And we're talking about all these collectively this evening. And the importance of this is that this supposed distinction between behaviour problems and mental health problems has actually largely been misused and misapplied as a way of restricting access of people with developmental disabilities to mental health services. So I would imagine that many of you in the audience have had the experience of, you know, a child or an adult with intellectual disability presenting to a mental health service and being told after some kind of very superficial assessment that, you know, they've got a behaviour problem, not a mental health problem. It's important for you to understand that this is completely bunking and what we have to do is we have to understand the origins of their emotional and behavioural disturbances as an individual, just as Janina said, and we have to do what we can to help and trying to make this kind of distinction. Firstly, it's not scientifically valid in any way and it's an excuse basically to avoid providing a service. So that's the first thing. Following again on from what Janina was saying about, you know, the labels, I completely agree. You know, the labels have uses. They also have disadvantages and one doesn't want to get too bogged down in, you know, whether kids are called ODD or any, and especially autism these days, you know, given that you get more ready access to the NDIS, you know, if you've got a label of autism or just about any kid with a developmental disability who looks sideways and is called autistic, it's become an almost useless diagnosis. So nevertheless, the NDIS and other services, educational services, like official classification, so one is obliged sometimes to use DSM or ICD labels. You know, that's okay if you think that it's going to help your client, but you know, don't get too bound by it. The other way of approaching classification is to start with the individual symptoms, the individual behaviors and emotions, which you can measure with various checklists, such as developmental behavior checklists, and then you then use factor analysis to work out the various domains of behaviors. So that's just about the labels and concepts. Now, when we talk about intellectual disability, it's actually a very wide range, and you know, the person with mild intellectual disability, for example, is more similar to somebody who is in the average intelligence range than they are to somebody with profound intellectual disability. But basically, this is a very rough guide. If person's got mild intellectual disability, their mental health problems are similar to the typically developing population, but they may be simpler in ideational content and externalizing or disruptive problems are common. Once you move down to moderate and severe intellectual disability, you see quite a number of behaviors which are very unusual in the typically developing population, such as the self-injurious behaviors, the repetitive behaviors, and the kinds of rituals, you know, and stereotypies that you see in autism, for example. Once you go down even further to profound intellectual disability, well, in that range, you don't have a lot of behavior, and so consequently, you don't have much behavior disturbing. One thing we know about behavior problems, firstly, there's an increased rate of about in children with developmental disabilities, and I use the term developmental disabilities really to encompass intellectual disability and autism. We know that there is an increased rate of behavior problems about three times that of the typically developing population. The increased rate starts early, and it continues to increase, and it declines slowly through young adulthood, but it still remains increased right through adulthood. I just don't want to go to the causes, and then I'll come back to the assessment issue. So the causes of mental health problems and behavioral emotional problems can be very broad, and in any individual, you will have a unique constellation of causes. So, you know, when you're thinking about the causes, it's best to have some kind of framework that you can use. So I just divide them into biological causes, psychological causes, and social causes. So in biological causes, you would include, these are just examples, it's not an exhaustive list, various aspects of brain dysfunction, the behavior types of genetic syndromes. So among children with intellectual disability, their intellectual disability is caused by mainly genetic phenomena, and there are a range of particular genetic syndromes like Williams syndrome, Prada-William syndrome, Down syndrome, of course, which you know, and so on, each of these is associated with particular types of behavior and behavior problems. And other biological functions, you may have concurrent epilepsy, of course, you may have sensory disturbances like, you know, visual and hearing impairments and so on, motor impairments. Then you go on to psychological factors. So there's the, if you've got intellectual disability, there's a reduced capacity to find adaptive solutions to problems that the young people are faced with. And unfortunately, people with intellectual disability experience trauma and abuse at an increased level. And then other types of psychological factors are learned, various learned, maladaptive behavior patterns. Then there are social factors, for example, stigma, exclusion, poverty is a big issue. People with the same level of intellectual disability who are poor or in poor families have higher rates of behavior disturbance than those who are not in poor families and of course, various kinds of family dysfunction. So these are just some of the causes, but it's a framework which would enable you to think about different factors which might be influencing behavior disturbance in your patient. So I would like to go back to assessment. So I would just say, these are just a few tips, use multiple sources of information. So if it's a school-aged child, I would virtually always get information from the school. You need to get information from everybody in the family, members of the extended family, involved in after-school programs and so on. You know, you're better off getting information from there as well or activity programs. When you're gathering information, it's best to use both the combination of structured and unstructured techniques. So by structured techniques, I mean various sorts of established, valid and reliable questionnaires. And by unstructured techniques, you need to give the family and each individual in the family a carte blanche to express their view about the behavioural and emotional problems. When you're interacting with the person with intellectual disability, this is a bit of an oversimplification, but you would use language equivalents of their mental age, not their chronological age. And then there are a number of visual tools like pictograms, which can be used to enable the person with intellectual disability to describe their own emotions. And remember that impairments may vary in severity across different domains. And I'll just give one example there. So children with Williams syndrome, for example, have quite a big difference between their expressive language is much better than their receptive language and that's considerably better than their visual spatial function. So function is not necessarily even across the domain. I mentioned some behaviour assessment questionnaires. So there's a number of these. The aberrant behaviour checklist is an American one who used a lot in drug studies. The one that I've developed over many years is the developmental behaviour checklist. That's got versions of parents and one for teachers and the adult ones as well. And these can serve a lot of purposes, but one purpose is in systematically gathering data about the particular behaviour problems that are there. They can save you a lot of time. I get parents to complete it before they come into the interview and that saves a lot of time as well as that. I would say that for those of you who might be working in developmental clinics, for example, it's a good way of getting a standardised structured account of children's behaviour and behaviour problems at a young age and then you can follow it over time and we don't have time to go into that into any greater detail. And it's available in 23 languages in Australia. Just a few points about assessment. This perhaps applies to teenagers more than knowers age, but older teenagers, nevertheless, there has been a history of over-diagnosing psychosis and using that as a justification for antipsychotic usage. And sometimes people say, oh, the person's talking and there's nobody there and that's evidence of hallucinations. Well, it's not. It can be just a social dysfunction. I mean, we all... It's normal to talk to ourselves except those of us who are well socialised tend not to do it out loud or people think we're hot. But of course there can be true divisions of hallucination. Well, people can... I often hear somebody saying, oh, he's paranoid and he thinks that people are against him and saying nasty things about him. Well, maybe it could be real, so you'd have to check that out. On the other hand, depression tends to be under-diagnosed, I would say. And I've just noted there that, you know, if you've got epilepsy, especially complex partial seizures, it can have significant effects on behaviour. And also think about medications that people are taking and their effects on behaviour. So I'll hand over to Janina. Thank you. So I guess one of the learning points was to consider protective factors. And I think really the point of this is that child lives within a system and when you're doing an assessment of a child's behaviour, you also need to think about, well, what's going on around them? I mean, I often say to students that I supervise, you know, what actually determines whether a child is brought for psychological therapy and it's actually often nothing to do with the nature of the child's problem. It's often to do with the way that the parents perceive that problem and also the support that they have. So I think it was interesting, the point that Stuart made about how poverty, so children with intellectual disability living in poverty often have much more severe behaviour problems than perhaps children living in families where there are protective factors which come from access to financial resources or access to family support. But I think when we look at Noah, what is really critical for him is that you get the sense that the parents have a good relationship with him and they've tried to prioritise his needs and to provide him with a stable routine. He's got an appropriate educational placement and that's not always the case for children with an intellectual disability. I often see, for example, younger children that may be struggling in mainstream and I guess those of you who are living in, coming from more remote areas, may live in an area where there actually isn't a choice of educational placement and the child goes to the local school where there are not always the resources available to support that child adequately. Noah's also fortunate in that he's engaged with a speech therapist to build his communication skills and living in an urban area. He's got access to specialist pediatricians or child psychiatrists who can assess him and can prescribe appropriate medication. So, again, I think being looked after by a multidisciplinary team or at least having access to professionals from different backgrounds can be really protective in that the child's actually receiving appropriate services and we know that communication skills are really important in terms of behaviour problems that often children with the most severe behaviour problems have quite limited communication skills which limit their capacity to express frustration or to communicate their needs in an appropriate way. Noah's also got, there's a history of his family having appropriately managed his behaviour and understanding what I think is really critical is that all behaviour has a communicative intent. When we look at a child's behaviour, we should never be saying, oh, they're just being manipulative or difficult or aggressive, which sometimes people do say, you know, we really need to step back and think, okay, well, what's the purpose of this child's behaviour? Because children are not aggressive for no reason. So really putting that behaviour into a context is really important and I think Noah's fortunate in this, in that his family already know this. And I think the other thing which we always need to bear in mind is that many of the families that we see with children or young adults with intellectual disability are often under increased stress because they may not have the support and if their child has mental health or behavioural difficulties, sometimes it's actually incredibly hard caring for them. So in this example, we have Amy who's got a mum who's got a history of breast milk depression and Noah's got a sister with anxiety. But what's protective here is that there's a willingness to engage with services, which again, I think is critical. So when we look at risk factors and some of these things are factors that Stuart's already identified, Noah has an intellectual disability and that in itself makes him more vulnerable to developing behavioural problems. He also has ADHD and he has epilepsy. So all those things place him at an increased long-term risk of behavioural mental health challenges. And I think the other risk factor here is that his mum, she's a primary carer, she doesn't work outside the home. She's also got an aging mother that she may need to care for. She's got the history of postnatal depression, which we've already identified. So in looking at Noah's needs, we mustn't forget the needs of his parents and I think any assessment needs to take back into consideration because often parents who under significant stress are simply not able to put into practice strategies which are going to help address their children's behavioural challenges. So we've already talked a bit about factors like developing his communication skills. Developing his communication skills, the importance of a predictable routine, that's probably important for all children, not just Noah. What's critical is responding consistently to his behaviour and also the broadly things like managing his environment. So we already know that in the past Noah's behaviour problems have been triggered by noise and I think he's not a big fan of high temperatures. Unfortunately, he lives in Australia so he's probably going to have to deal with that one. But perhaps this is where diagnosis can come in handy in that some children with a diagnosis of autism may be particularly sensitive to certain environmental factors or may have particular sensitivity. So we need to be aware of that when we're planning an intervention. And simple steps can be looking at how do we manage those. So a child with acute sensitivity to noise if you get them some good earphones, that may actually help a lot in terms of reducing their distress. We also need to review medication and it's already mentioned that obviously behaviour medication can have side effects but also it's critical in the treatment of some children for example with epilepsy. What we don't know with Noah is has there been some change in his epileptic activity which is impacting on his sleep. And again, what sort of support are these family getting? What sort of services are available to assist them in caring for Noah? So I think as a psychologist I tend to probably look at two main factors. One is the family support and as Stuart's already said I think it's really important to meet with the parents and talk to them about their views and expectations both of themselves as carers and of their child. What does they believe about Noah? So you get some parents that will say oh my child's being so manipulative and look at that as a very negative whereas if you step back what you might realise is the child is doing their best to exert some control over their environment and most people can kind of understand that if you explain well you can exert influence by talking to people maybe your child can't do that so the only way they're going to control their environment is through their behaviour and again sometimes that shift in belief and understanding of the child's behaviour can have a profound sense of can have a profound influence in how the family then deal with the behavioural challenges that they face. So that sort of family support and individual support for carers who may be themselves depressed or under a lot of stress I think is always very critical and that can fit well within the role of a psychologist or a social worker. Actually I think it's probably the role of any therapist that the parents can talk to you about some of the stresses they're facing and feel that you understand the challenges and obviously then there's behavioural support so more specifically looking at how do we understand this child's behaviour and I'm hoping most of you would be familiar with the idea of an ABC chart so looking at antecedents so what comes before the behaviour B stands for behaviour and C is consequences so at a very simple level okay what happens before the child has a meltdown how do you react when your child has a meltdown it can be incredibly informative and you would look at what happens at home and at the school and then look at what are the triggers and what are reinforcing the behaviours so when we identify triggers and sometimes that's easier to do than at other times how can they be modified so I gave a very simple example child has a meltdown when there's a lot of noise sometimes a simple strategy like noise counselling earphones you know those things not earphones, whatever they're called can make a huge difference to a child's life you know if a child is very sensitive to textures and they always have a meltdown when it's time to go to school and they're putting shoes and socks you might work out that actually they just have a strong aversion to the feel of their socks and changing something simple as that can make a huge difference obviously sometimes the trigger more complex and then the other thing we think about is what reinforces these behaviours and I think it's really really important to remember that often with children with an intellectual disability attention whether that's positive or negative can reinforce a behaviour so you know sometimes we think why on earth would they be doing that if they get shouted at or if they get smacked or if you know the parent gets very agitated well if your understanding of how the world functions is limited sometimes having a parent you know going why are you doing that what are you doing lots of facial expressions that can be quite reinforcing and often parents don't understand that so you know looking at reinforces which can be both rewards so you know you do get children who might tantrum and then they're given lollies because the parents know that makes them quiet so the child learns okay a great way to get lollies is to have a meltdown but also that idea that we understand that a behaviour can be reinforced by negative consequences negative negative attention is also reinforcing so I've already talked about this we need to look at circumstances which can make the behaviour more or less likely look at the antecedents and consequences and going back to the point the challenging behaviour rarely occur without a precipitant so there are occasionally children who get very distressed and it's difficult to work out what's going on with the more we also need to factor in physical factors like pain so for teenage girls it might be around the time that they're getting their period or something like that those aren't things that the young person themselves is going to articulate they may not actually be able to tell you that they're in pain so it's always important to have that on the list of things to think about as I've already mentioned identify the gains of the behaviour so again some children have a tantrum mum and dad wants to shut you up you get a lolly, great reinforcer and for those psychologists out there the question I'd have see if you can answer it what's the most powerful form of reinforcement you don't have to answer it but if you had intermittent reinforcement get a virtual gold star because basically it's if one in five times the child gets a lolly for having a tantrum they will carry on having tantrums because what they've learnt is well you never know when you're in luck so I think it's just important to remember that intermittent reinforcement and at the end of the day what we're trying to do is reward and build more adaptive solutions and try to skill up the child and build really on the things that they're doing well so although sometimes we need to focus on diminishing the problematic behaviour by using time out or something more often than not rewarding the behaviour we want to see more of is incredibly powerful helping the child develop appropriate communication skills so they don't have to have a meltdown in order to get what they need looking at environmental triggers all those actions are things we need to consider so we select one behaviour at a time usually the behaviour which is causing the most concern ideally the behaviour must be easily to understand by the child and the parent so not reinforcing being a good boy we need to have specifics so I tend to try and I always think you try and reward the behaviour you want to see more of so say if the child is kicking his sister you'd be looking at rewarding keeping your hands and feet to yourself pick a reward that matters to the child and that's a skill in itself because you need to understand what makes the child tick some children you can make great changes with literary stickers some children iPad time some children choosing your dessert some children money or points it really depends but that I think step three is critical and you've got to make it interesting so the reward may need to change over time or it might need to be a little bit more difficult for the child to get the reward so on a very simple level if you're looking at an eresis bed wetting you might start off with a reward for every dry night and as the child manages that you might change it to a reward for every two dry nights or three dry nights or a week usually if a behavioural programme works you'll find you actually it's sort of naturally the child doesn't need the reward because the behaviour's improved but that's the consistency and the time between the behaviour and the reward has to be close enough to be within the child's time concept so most children and young children particularly with an intellectual disability they're not going to cope with one reward at the end of the day for a behaviour they've done in the morning you probably need to reward almost obviously with an older child or a more able intellectually able child you can extend that but often with children with intellectual disability the rewards need to be fairly often immediate or if not immediate very soon after the behaviour trying to build as I've said in terms of building skills step five you're really trying to help the child for a more adaptive way to achieve what he, she wants so that may be teaching the parents you've really got to notice when they're doing the right thing because often what parents do particularly if they're stressed you know if the child's being well behaved and quiet they might just ignore them they'll be going oh thank goodness for that I can get on with cleaning or I can have my cup of tea but actually that's the time when they need to be giving the child positives and I would sort of talk about it like kind of money in the bank that if the child gets enough attention for the positive behaviour often it sort of satiates them and they don't need to be doing the less adaptive stuff in order to get attention and this is where we're also looking at skills so whether it's building their communication skills or helping them regulate their arousal or looking at sensory sensitivities so really we need to build in all those steps now Stuart's going to talk a little bit about the developmental behaviour checklist which is you can buy it's quite affordable and if for those of you who want to do something more structured this is a good tool so over to you Stuart thanks Gina I'm just going to go back because there was one item there that I think dropped off the list there so step 6 which I think is very important is that the child should be able to tell you describe the reward program to you so I couldn't tell you the number of times parents have said to me oh we tried to reward charts and it didn't work and I said well did Johnny know what he had to do and they said oh yes he knew exactly what he had to do and I said to Johnny what did you have to do to get the reward and Johnny says oh I had to I had to be good and you say what do you have to do to be good and Johnny says I don't know this has happened countless times so the child should be able to tell you you need to test this with the child when you're designing this program what the child should be able to tell you what behaviour they've got to do what the reward is and when they're going to get it if not it's the program's too complicated and I really recommend to you that you were on the side of making the behaviour program too simple rather than too complicated they usually fail because they're too complex the other thing about it is that with behaviour interventions or any interventions and this includes pharmacological drug treatments that it's much better if you've got some kind of a systematic way of measuring whether your intervention is working or not and the reason is because kids with developmental disabilities have very complicated lives and you know you've prescribed some treatment and then three months later however long the parents come back and say what's happened and oh well you know he got he got better for a while and then he didn't and we think it was working and then they say oh but you know but Grandma came and stayed and then the dog died and then some other life event happened and then he got sick and it's actually it becomes so complex that you really can't work out you can't differentiate the effects of your treatment from the effects of all these other changes in life circumstances and also you know, Achenbach the author of the Child Behaviour Checklist taught us that when you ask people to retrospectively give an account of children's behaviour there are all kinds of distortions which come into it which we don't have time to go into but if you ask people how for example there's the recency bias which means that if you say to people you know how's Johnny been over the last six months they tend to describe what he's been like over the last two days then there's the saliency bias so you know if Johnny throws something in the house and it doesn't hit anything then they say it's not a problem it happens to smash a valuable family heirloom they say it's a terrible problem even though the Johnny's behaviour is exactly the same and there's a whole series of other bias so the point is that what you do with this is the monitoring version of the DBC you can design your own but this is the way I do it you pick up the five items and you get the parents to rate them every day and the five items are items that you have particular targets of your intervention or they might be particular side effects you want to be monitoring for and and you get them to rank them you get them to rate them prospectively and all they have to do is every day I tell people put this on your bedside table and before you go to sleep take each of these behaviours that we've agreed are the key behaviours and I'll just pick some random ones here they're not particularly to do with Noah by the way and you know you just score it two was it a severe problem today one was a moderate size problem just a couple of minutes to score the five items and then they do that every day and at the end of the week you end up with a weekly total and then in the next slide you graph and you can get the families to graph they're usually better with Excel or whatever than I am and then you can see so what you're looking for is you can see whether the behaviours are getting better over time and the longer you do that one for each behaviour and the longer they keep this going the better because for example let's say there is a issue of behaviour problems associated with menstrual cycle what are you going to see a spike every four weeks it could be worse in the winter if they've got some seasonal effective components and you can plot on it if there are changes in treatment at any point the issue is that structured prospective measurement of how the effects of your intervention is much more valid than retrospective and unstructured monitoring do you want me to talk to this to you in order? I was just going to say we're on 21 I think I've probably covered this one but I'll just recap some of the items particularly in relation to NDIS because obviously that's opened up potentially opened up access to services for a lot of people although again depending on which area you live in you may or may not have appropriate services within easy access but I think my topic of writing support letters for people with NDIS applications and Stuart may have his own ones is I've gone simple I've seen people being rejected for NDIS applications when they've got sort of tones which talk about trauma and all sorts of things often NDIS don't understand that and I think they do understand a diagnosis so going back to the point that Stuart made there are times when a diagnosis is very handy and certainly in NDIS the more diagnosis you have the handier it is so putting in those DSM codes very useful and also NDIS understand money so very often if I put in something I will just add a sentence saying in my opinion the child would benefit from X number of sessions costed at such and such a price total for the year would be X that saves the NDIS planner a lot of time they've got the diagnosis they've got the money they've got the cost they're much more likely to take that on board then if you write three paragraphs spelling out you know the child's history and everything else sometimes in my experience keeping it brief using NDIS language can be the most effective and I've also mentioned there are some very good programs again depending where you live you may or may not be able to access those but you may be familiar with the Stepping Stones triple P adaptation which Stuart was involved in and that's a specific version of triple P for parents of children with an intellectual disability or developmental delay and I've also heard of Australia now they're in the process of change and I'm not quite sure what their services will look like later this year but up till now they have offered free counselling for carers I think they will continue offering some online support whether they will offer the face-to-face counselling I don't know but it is useful regardless of where you live to be aware of what are the other services in my area that are good that I can suggest and of services like Carers New South Carers Australia which is a national service and is focused on helping carers obviously as their name suggests now Stuart's going to talk a bit about pharmacological treatment which again I see absolutely there is a role to play as long as and I think this is where the expertise of the prescriber comes in and again it depends where you work if you're in a metropolitan city there will be people specialists like Stuart or other dieteritians expertise obviously if you're in a more remote area you may be more dependent on a family doctor or having to travel to access access medical specialist so Stuart I don't know do you want to say a little bit more about this yes so sorry we're on to slide 22 so this is a this is a summary of an approach to prescribing so for those if there are doctors in the audience who have prescribed I'll just take you to this sorry I don't know where is the list of resources so Stuart the resources there's a tab for people at the end of the webinar which will go through which will have resources on them yes okay well when we get to that I'll comment then about one of the particular articles which describes this in a systematic way and in more detail I was just looking for that reference there but anyway just one thing to keep in mind you know you're prescribing to comply with the guardianship act and that varies a bit between one state and the other won't apply in yourself whilst a nine year old but if your patient is over 16 it will just a general thing tranquilizers major tranquilizers especially tend to be over prescribed you need to use a systematic approach you've got to identify exactly what to name see what your targets are and they need to be much better if you've got specific targets which you can then monitor in the with the DBCM that I showed you with the chart rather than vague notions of you know we want to hope the medication will help him to function better or something which you're never going to be able to measure accurately decide what the maximum dose is that you're going to go up to before before you start monitor effects and side effects in a systematic way remember that side effects and dosage sensitivities are more common in this population because the child brain is not normal not typical to start with and so effects of medication are often less predictable so you've got to be extra cautious and withdraw slowly now I've listed there some of the different types of psychotropic drugs which we use to try to treat behavioral or assist in the treatment of behavioral emotional problems in this population I certainly don't have time we don't have time now to describe the use and the benefits and side effects and so on and application of each of these maybe if there's time in the questions somebody's got a burning question we may do that but of course the drugs that are available will change over time so I think it's most important the message I'd like to give you is that you use a systematic approach to prescribing I very often see perhaps older children maybe a teenager who's had a whole lot of trials have been exposed to a whole lot of different psychotropic medications the effects were never measured properly and you really cannot work out even after years of prescribing you really can't work out what was of benefit what was of minor benefit what was of major benefit was the problem of inadequate dosage and so on the whole trying to put together a retrospective understanding of their exposure and experience with medications is impossible okay thank you Stuart and I just want to thank you and Janina they were really great insightful presentations and thanks also to the 860 of you who are currently online that's a phenomenal amount of interest in this subject so we're really pleased with that also we're really pleased with the great questions that are coming through the chat room thanks also to Jackie for managing that Janina I'm going to start with you because we've got lots of questions from people like Naomi and Noel who are really focusing on the family of someone with a child with intellectual disability and their questions really are talking about the importance of encouraging parents to collaborate with you or other professionals to really get to know what's going to work best for their child have you got a comment on that oh yes I mean absolutely collaboration is I think at the heart of any effective intervention I mean not just with a child with intellectual disability probably with anyone and I think one of the key skills you can have is simply to listen and often people have a story they want to tell you and I think if they trust you and they trust you to respect that story you know that's a very good start I mean that doesn't always happen I've been in practice for a very long time and occasionally you see families who they just have a particular perspective I guess the most problematic ones are either when they see their child in a very negative way so those terms about child being only being manipulative he's being aggressive he's being violent I've heard a 3 year old being described as violent and you think well that's a concern if you can't shift that parent's perception of a 3 year old as being aggressive and violent and I think the other problematic situation is occasionally I meet families whose entire identity is about a sort of problem infused so in a way the problems that they have are like a badge of honour it gives them a structure to their lives on some ways their child is more complex than any other child you've seen and regardless of what you say they're not going to be happy with it so you can get problems in working cooperatively with people and occasionally click you know people sometimes don't like you for whatever reason but you know the key thing is that cooperative endeavour that what you're doing comes from a place of working cooperatively with the family I don't know the balance of the question absolutely does Janina thank you so much for that another question which has come through from Kate and others has been considering that Noah has a sibling an older sister like when in your practice Janina are there times when you are able to consider the child's relationship with the sibling yeah absolutely so look I think there's sort of there's various things that we might do occasionally you see families where they're focused so much on the child with a disability that the sibling almost gets sidelined and is expected to be extremely mature and independent and obviously then part of the intervention is about how you help the parents understand that they also need to address the siblings need and sometimes one of the things that parents often find very difficult parents talk about they're going to the shopping centre and they feel obliged to take all the children and the child with the intellectual disability may have sensitive sensitivities or they may just not be able to cope with the world know when they see their favourite toy at the checkout at Woolies and sometimes those expeditions end very badly so sometimes giving parents permission to say look you know it's absolutely perfectly all right to leave Noah at home and sometimes have a go for afternoon tea with Jesse or you know sometimes those family events might just be too much for Noah it's actually okay occasionally not to take him along so you know that's kind of giving people permission to focus on their normally developing child some services do siblings group so I'd say you know if you work in a service that's got a lot of children coming in sometimes the siblings group can be really helpful which is focused on helping children siblings understand some of their negative and positive feelings that they may have about having a disabled sibling and we also I'm always mindful so for example if somebody like Jesse was presenting in my service I'd be looking at getting one of my colleagues involved in actually maybe doing some individual work with Jesse or working with the family on assisting Jesse with her anxiety so yes and I think that's part of thinking about the whole family but you know the thing that I oh well there's two things that I always say to parents one is I think there's a lot of literature that talks about actually that siblings of children with a disability can grow up to be much more empathic and sort of positive members of society so it's not necessarily a negative as long as their needs have been met and that involves also acknowledging that sometimes the sibling can feel very negative feelings towards their younger brother in this case you know that allowing the child to be able to say you know sometimes I really hate when Noah screams or sometimes I find you know he's a real embarrassment to me when I'm with my friends I think allowing children to say that as well as obviously the positive things is important and also allowing older siblings sometimes parents go well look he knows we've talked to him about autism he should understand just recognising that actually adults sometimes struggle with a 10 year old may be able to tell you all about autism but that doesn't mean that when their younger brother or sister is being extremely difficult they're going to be able to go oh well that's fine I'm not going to get upset because I know they have autism so yeah that's a few things to think about there I guess thank you Janina a lot of questions for you around the connection between Noah and his intellectual disability and his mental health so how would you support Noah's parents to remain hopeful and confident in nurturing Noah's mental health I know that you certainly touched upon that but would you like to explore that a little bit more well I think in terms of maintaining their confidence I think that is conveyed by the by the treating clinician that supported that's helped if the treating clinician demonstrates that they're able and willing to take a thorough and patient develop a thorough and patient understanding of the problems and that they're able to validate everybody's opinion or at least willing to give everybody the opportunity in the family to express their views about it and I think to convey the idea that you've got some process in mind for developing an understanding of the what's caused the current problems you've got some kind of a rational approach to trialing interventions now none of that means that you try to maintain their hope by minimizing the problems and saying I'm sure we can fix it up because sometimes we can't but I think that they will feel confident if they get the idea that you are willing to give it your best understanding your best and that you're willing to try sensible to give sensible trials of different approaches and I think what's important is that is never to say to the family well there's no more I can do for you which is really a way of saying you know go away I've learned never to say that to people because I discovered that people value even if you as a therapist feel that you're not able to live a much people do value the fact that you're willing to to stay with them and the family and support the family with the problem even if you can't change it much and at least even if you always show that you are open and that you are looking for new avenues of intervention it could be seeking second opinions to be trialling out novel interventions if they're safe so I think that's what I would say about keeping up parents hope even when the times things are feeling hopeless or even the therapist is feeling rather hopeless Stuart I'm really interested in that from a lot of what you've said is really that kind of idea of staying with the family and continuing to collaborate with them how do you know in the first session that that's what you're most interested in what are the kind of key messages that you're wanting to provide a family when they first come in to see you in that very first session well I think it's largely I think Janina's covered this to a fair extent you want to understand it from the viewpoint of this is what Steven called multi-directional partiality that's to say you want to be partial to everybody's point of view and not to be judgmental so you want to know what's the problem look like to mum, what's it look like to dad certainly what's it look like from the point of view of Jesse the sister and what's it look like for me now is point of view so so families feel they'll feel good about your interview if they feel that they have been understood heard and understood yeah thank you Stuart Janina a question from you from Sabu a great question where the parents of a child with intellectual disability may have a intellectual disability themselves how are you able to work with them to be able to kind of describe some of the effects of intellectual disability or mental health on their child well I think Stuart made the point early on that you know if you're dealing with somebody with an intellectual disability you need to communicate with them at the level of their communication so I would say the parents themselves have an intellectual disability you have to keep it clear and simple and kind of check in with what their understanding is so you know sometimes when I I'm finishing off a session with parents and I maybe made some suggestions I might jot those down on a piece of paper obviously that's not going to be helpful if somebody has limited literacy skills but I might actually say to them okay just run by me what are the main points we raised and what do you need to be doing and then you know I remember for well what the points I've made but if they can explain it back to me then they've understood it much like Stuart said if you write a behaviour program if the child can't understand what they're getting rewarded for and what they have to do it's a bit pointless you know sometimes I've used visuals so I mean this is more for children but you know again you could adapt it so rather than writing I would do my best to do little kind of my cartoons of things just as prompts as reminders for these are the key things you have to remember and I think be realistic obviously if the parents have an intellectual disability and they have very limited support and they have a challenging child you know fail unless they're supported you know at the worst case scenario you may be dealing with a situation where there is real risks of significant harm to the child because the parents are unable to understand their needs or unable to you know put into place strategies which might protect the child I think that's a worst case scenario I think the starting point is you know keep it simple are these parents able to understand what you're saying understand take on board some of the concepts do they have support in place to assist them so you know if there's a support worker for the parents get them to come to the interview so they can take on board what you're saying and then they can support the parents in a much more hands on way and sometimes also with parents with an intellectual disability you have to show them by doing it words aren't enough sometimes you actually have to demonstrate and obviously depends on what sort of service you live you work in I don't do visits but certainly again with NDIS you might be looking at home-based support services who can actually work side by side with the parents to demonstrate the skills I don't know if that answers the question it certainly does yes and thank you it's a really shown because there's really great questions here at the moment but we are kind of running out of time that we've got 881 participants at the moment lots of them asking really great questions and we will we will put see if we can get to those but for now what I'm going to ask both you Stuart and Janina to do is just provide some final thoughts for us just in a minute or two just to kind of sum up final thoughts for tonight so I might start with you Stuart is that okay well I of course I'm not really aware of the professional position of all the participants but and you'll each have different priorities but I would say that working with families of children with developmental disabilities is often challenging but it's very rewarding please try to apply the general principles you've learned about family assessments and family interventions and childhood interventions but with some particular modifications and refinements that have been touched on this evening hang in there with the families feel free to ask questions if people want to email me you can do so and I'll try to answer your questions more specifically and if you if you're willing to hang in there with the families they will greatly appreciate it and it will prove of great benefit to the young person in the long run thank you so much Stuart Janina I guess in terms of for the psychologists out there often people don't necessarily work with children and young people in intellectual disability as part of their training so sometimes it can seem a bit overwhelming I think the principles that you can apply to any to working with any child or family can apply to children the families where there is a child intellectual disability if you're not sure get supervision you know like Stuart said some of this work is it's more long term work it can be very rewarding don't underestimate the benefit of just listening and being with people and actually acknowledging say the distress that parents might face so it can be very rewarding and I've been a psychologist for a very long time I always think there's new things you can learn so if you're interested in this area start by reading some of these resources I mean you've all come to this webinar so there's an interest there so school yourself up and kind of go for it because like Stuart said sometimes these parents can be these families can be excluded from services obviously with the advent of NDIS there's more options say if you're in private practice to get to make this work viable but you know learn and don't be put off that's it thank you so much Janina once again I just really want to thank both you and Stuart I think all of our audience will agree the almost 900 of them that tonight's presentations have been incredibly informative and worthwhile so thank you and as Stuart suggested let's keep these conversations going I think they're obviously very useful ones for all of us in whatever sectors we're in so just a reminder that there are some resources and further reading for you so please click on the light blue icon at the top of the screen and also just a reminder about the exit survey so please go to the yellow icon at the top right and fill in the exit survey feedback survey so that we can make sure that we're delivering the best possible product to you so really appreciate you doing that so the next webinar in our series for Emerging Minds and MHPN is the Supporting Trans and Gender Diverse Children and their Families which will be on the 23rd of April there's also a couple of MHPN webinars coming up one of them Mental Illness, Terrorism and Grievance Fueled Violence Understanding the Nexus on Tuesday the 18th of February and responding to the needs of the person who presents with suicidality on Monday the 23rd of March so just a few words before we go about the partnership between MHPN and Emerging Minds this webinar was co-produced by MHPN and Emerging Minds for the Emerging Minds National Workforce Centre for Children Mental Health Project the project is led by Emerging Minds and Delivered in partnership with the Australian Institute of Family Studies the Australian National University the Parenting Research Centre and the Royal Australian College of General Practitioners MHP supports the engagement and ongoing maintenance of practitioner networks where clinicians from different disciplines meet regularly with other mental health practitioners share tips and resources and build local or several pathways and engage in CPD activities to learn more about this please go to MHPN.org.au so before I close tonight I'd just like to acknowledge the consumers and carers who have lived with mental health illness currently and in the past and those who continue to live with mental illness thank you to everyone for your participation this evening it's been a great webinar I've really enjoyed it and I hope to see you for the future ones thank you and good night thank you