Welcome, everybody, and thank you for joining us tonight for the Developmental Delay and Intellectual Disability Identification Pathways to Diagnosis and Referral Support CPD event. My name is Hannah Coffey, and I am the Intellectual Disability Project Coordinator at Central and Eastern Sydney PHN. Also working with me tonight is Lydia Connick, our CPD Program Officer, and my colleagues Claire Woods and Jennifer Brennan, Intellectual Disability Service Navigators, are also online. I'm going to start by acknowledging the traditional custodians and sovereign people of the land across which we work.
I recognise their continuing connection to land, water and community and pay respect to elders past, present and emerging. I also extend that respect to Aboriginal colleagues joining us tonight. Before I introduce our first speaker, I'd like to note a few housekeeping items.
Please note this webinar is being recorded and will be available on our video library in the next few days. Please submit your questions through the presentation into the Q&A function which is available from the bottom of your screen. Questions will be answered by the presenters at the end of each presentation.
An evaluation survey will be available at the end of the webinar from the chat function and on your screens once the webinar is concluded. Please allow us up to two weeks to issue your certificates of attendance and to process your RACGP points. The CPD annual planning survey for the 2023 program is out now. We'd like to encourage everybody to please participate and thank you in advance for providing your feedback.
This evening's CPD event is being delivered as a component of Project Grow, which is a Commonwealth-funded pilot program aimed at improving health outcomes for people with intellectual disability. Alongside CPD events, the Grow team provide in-practice training to GP and allied health practices. on communication techniques, reasonable adjustments and quality improvement activities.
This training is open to all practice staff including reception and administration staff and can be tailored to the needs of the practice. For more information please email the intellectual disability team or visit the GROW project website. I'm just going to go through a couple of other projects and programs resources that are available at the moment.
Some COVID information, COVID-19 information and resources. Please note down any of the relevant links from this slide. The Assessment Services Guide is quite a comprehensive live guide that outlines the services we provide and the ones that we fund.
It's designed for health professionals. Please refer to that for further information. Head to Health is a free service open to people any age who are experiencing mental ill health. Next slide.
That's it. Thanks Lydia. I will now introduce our first presenter for the evening who's Dr Vanessa Sarkozy. Dr Sarkozy is a developmental paediatrician at Sydney Children's Hospital in Randwick. She is currently head of department at Tumbarton which is the child development service base there.
Vanessa if you want to try sharing your slides. Good afternoon everybody and hopefully this worked the first time. Yeah, we can see those.
Thanks, Vanessa. That's a good start. So thank you very much for the opportunity and the invitation.
I'm afraid I'm one of the lucky COVID recipients at the moment, so I apologise if I'm a little bit croaky. I would also like to acknowledge that we're meeting on Gadigal land, or at least I am, and acknowledge the many lands that you're all coming from tonight. I'm a developmental paediatrician so that means that my interests really are in child development, behaviour and the care of children with disabilities. Today it's a big topic and I've as it always got too many slides but I thought they would be useful for reference so I really wanted to touch on what is developmental delay, why we diagnose developmental delay, talk about what we mean by screening surveillance and assessment in New South Wales health and how we intersect between New South Wales health and general practice.
A little bit about us at Tumbleton and then very briefly causes of developmental delays and investigations and management of developmental delay. So child development is a complex and rapid period of growth that happens in the first five years of life. And it's really that marked progress that happens. It's not matched by any other growth or development.
that it hasn't happened before birth so obviously conception to birth is the most rapid and then the next five years are the next most rapid with huge amount of growing growth and pruning and change and essentially we go from being a totally helpless baby and to being school ready in those five years so an expectation that we're able to ask and answer questions engage independently open our own lunchbox feed ourselves toilet ourselves negotiate peer interactions so you there's a lot to be done in five years and there's no time in your life where you would be expected to learn that much and make that much progress so not surprisingly there are difficulties and not all children have this as a smooth experience. As I've said it's progressive acquisition of skills over those sort of first four to six years it's very much stepwise so you have the first step of development and then you build forwards from there. It is important to remember that it is an interaction between the child and their innate. abilities their genetic predispositions and their environment and it's the interaction between two that decides the trajectory forward and it relates to all of the things that I've just said about how children move how they engage with the world how they communicate how they learn and how they develop independence and self-care skills and peer interactions and relationship skills essentially we talk about four main areas so gross motor big body movements you from head control to riding a bicycle, and fine motor, which goes from sort of hand regard right at the beginning to being able to, you know, draw pictures and write sentences and our names, etc. as we're starting school, maybe more names than sentences at the beginning. Communication, again, using and understanding communication in its broadest sense, and again, a huge range of growth over those first five years.
And personal social, which includes both your ability to self-care and your ability to socialise and engage with peers and play, which is such an important component of early childhood in terms of gaining skills and moving forwards. This is a really old slide, but it does it beautifully and I've never found one I like as much. And it really speaks to the stepwise trajectory of gross motor skills.
You can't roll until you can hold your head up and you have strength in your arms. You can't sit until you've got core support. You can't really stand until you've mastered that upper body strength and so forth and so onwards.
Different ranges of normal as you go through the different skills, but very much a sequential, predictable set of development that we can track a child's development against. This is much more modern. version that you'd always be familiar with from New South Wales Health which originally comes from the CDC in the States, Learn the Signs and Act Early and again it's got that lovely idea of a transition and a pathway through those first five years and the website has just been updated at CDC and it's got some really lovely videos if you want to go back think about normal development so that you're able to make those comparisons this is a really lovely website to do it from.
Developmental vulnerability is a concept of having developmental difficulties by virtue of an environment and also reflects your lack of school readiness when you arrive at school. The ADEDC, which is the Australian Early Developmental Census, which runs every three years in Australian schools, in all Australian schools, public, private, Catholic, etc. And it shows us that developmental vulnerabilities and not being school ready in one or more areas is...
are prevalent in the Australian population and equivalent to what we see across the world. So somewhere between 10 and 25 percent of children in high-income settings are considered to be developmentally vulnerable so they're not ready to flourish. They haven't got to that five-year stage and are ready to take that step into formal education. The developmental vulnerability is not uniformly spread across our population like most health issues, disorders etc. children who are indigenous or overly represented, children whose home language background is other than English, children who live in remote and regional New South Wales and Australia, and those who live in the lowest socioeconomic income areas are all more overly represented in these statistics, as they are in disability statistics if you then look at that data.
So what do we mean by delay? Essentially, developmental delay is when we fail to make the expected developmental gains in the time frame that we know and understand to be typical. So we have a really good idea from Darwin onwards about what child development should look like.
And if we don't get that, that's what we call delay. It's a descriptive term rather than a strongly diagnostic one. It only applies to the under fives.
So although we all use developmental delay and global developmental delay in seven and 10 and 15 year olds, it is an inappropriate term to be using once a child has reached five. It's a descriptive term, it can be confined to one area of developmental delay or many. And if you have a number of two or more developmental areas, particularly the cognitively loaded areas that are delayed a substantial amount, I'll talk about what that actually means.
And then we would be using terms like global developmental delay. It's common developmental disorders. About 1 to 4% of children have a major developmental disability.
About 5% of preschoolers have got developmental problems that actually need formal intervention. And up to 15% of school-aged children will have learning problems, behavioural difficulties, which require or would benefit from intervention. So really common disorders. It's a bulk of what paediatricians see, and I suspect. it's a big chunk of what general practice is as well.
In terms of rules of thumb I think this one is a good one essentially if you're more than three quarters behind where you're supposed to be you would be considered delayed so if you're 12 months old and you've got nine months old skills then you have delay so at 12 months you should be pulling to stand starting to take some steps cruising so if you're just crawling and you're not yet pulling to stand then you're a couple of months behind so you've probably got some delay in that domain if you're two and you are using single words you're not putting two words together you've probably got about 50 words mainly nouns then you're feeling much more like an 18 month than a two-year-old and again you've got language delay so it's a really broad rule but it works and it's a good way of thinking about where is this child where should this child be how far behind are they hmm In terms of defining global developmental delay we'd say it was two standard deviations below the mean. Why do we want to identify children who have developmental delays? Essentially because intervention can make a difference.
We can support skill development, we can support adaption, we can identify and manage any medical comorbidities, we can provide family support and engage in genetic counselling if that's what the family wants to do. Early intervention works because the early brain is very plastic and we have these critical periods of development where we have an opportunity to get in and make a difference. By intervening early we can also prevent secondary and tertiary disability, we can enhance functioning as I've said and support families appropriately.
Those sensitive periods are critical periods in the early development and they really reflect a time period where It's that crucial interaction between the child and the environment that makes the difference to developing the skill. So the most obvious one is amblyopia, so if you've got a squint, you've got double vision. The brain just disregards one of the images and that eye fails to develop and that's why we screen for squints and that's why we get children in early if we see that. Same happens with language acquisitions, which is why we screen for sensorineural hearing loss in the very, you know, newborn period. because we know that the phenomes are laid in the second half of that first year.
So if you've got normal hearing established before six months, your capacity to develop normal speech and language skills is retained. It's why we aim to get concliars in children before six months. And that's another very old diagram from a very old paper, but it just gives you those critical periods and how they wane fairly quickly, which is why surveillance in those early years is so important, because we have an opportunity to engage and change developmental trajectories.
We talked about the term developmental vulnerability, essentially children being developmentally at risk by virtual, the number of factors, genetic factors listed in their medical factors. and psychosocial factors which I've listed here. None of those are going to surprise you and you would be seeing this regularly in practice. As you know, adverse childhood experiences have an impact in terms of long-term outcomes, they disrupt neurodevelopment and also, and again we're coming back to that idea of the child and the environment and we can optimize the environment to optimize the child's outcome.
What we aim to do is to promote protective factors that optimise children's outcome and reduce their their risk factors that reduce their capacity to reach their long-term trajectories. We can't fix intellectual disability in most causes at this stage but we can really make a difference to the amount of function a child can have and certainly when children have got milder problems. finding that early and engaging early makes a big difference and they're just a whole range of different things but a public health really um and um looking at the broader engagement of health with well-being um which makes a difference to children's outcomes We know early intervention works so Heckman's equation graph is very familiar to you all.
If we invest in the early years the taxpayer gets their money back and so after that everything else just costs. Early intervention builds competency, supports families and supports integration and inclusion. And preschool early education has a significant impact in terms of long-term positive outcomes. And we know that if we've missed it, we're not very good at catching it up once kids are at school. And that's all to do with plasticity and also the nature of schools and that sort of movement forward.
We know that children, this is NAPLAN, this is AEDC data. So that sort of census data mapped onto NAPLAN results. So developmentally vulnerable students who have lower NAPLAN numeracy and reading scores all the way through school.
But that gap continues to get bigger. bigger so in year three the developmentally vulnerable group is a year behind but by year they're two years behind by year seven so the gap just continues to widen with those long-term poor outcomes that we've talked about and those children who are developmentally vulnerable are much more likely to disengage from school so for all of these reasons picking it up early is what matters. Children present in lots of different ways conditions can be obvious at birth you There might be risk factors in the history or a particularly targeted group who's getting targeted screening because we know they're at risk through universal developmental screening which is not as well attended as I guess most of us would like and is still not considered standard of care by many families.
Most children certainly present well service because they're failing to attend milestones or attain their milestones or parental or principal concerns have developed over time. I've done a sort of discussion about different presentations, different ages. I'm not going to go through every single slide because you will all go to sleep.
Developmental milestones are not the most exciting, it's a bit like learning anatomy. But I just wanted you to have some visual representations and some clear guidance around when to worry at the different ages. So I have colour coded it in red, gross motor, fine motor, communication and personal, social. Concerns at any age, if the children have got... abnormal or unequal tone if there is weakness or regression and loss of skill those children should be reviewed those potentially are a medical emergency and there are a flag that needs to be looked at quickly through a general pediatrician generally and these are really just pictures most of these come from the CDC website which have sort of cut off from videos etc but those are the presentations that we worry about in the first six months and I've just gone through six to twelve months 12 to 18 months and as you can see we're moving from being gross motor fine motor language and the nature of the concerns tend to change as the child's got older between two and three it's mainly language and personal social issues and that really persists and then a more general concern about low acquisition of skills Language should be comprehensible to other adults.
About time you're four, about 80% of what you say should be comprehensible to other adults. And by five, almost all of what you say should be. And certainly once they get to school, it doesn't tend to be developmental delays and loss of milestones. It's much more about academic performance, behaviour, social skills, peer relationships.
Some motor clumsiness can come in at that stage. But they're usually over five and at school. These are the developmental red flags, which I like to have in every presentation, just so that you've got them there.
Regression, as I've said, children should be rolling by six months. They should be sitting by eight months. In fact, the CP guidelines are now saying that if you're not sitting independently by nine months, you should be reviewed for cerebral palsy.
Should be crawling by 10 months, babbling, pointing, gesturing, consistently turning to your name by 12 months, which will. making you worry about language and social communication, you should have single words by 16 months, you should be walking by 18 months, and you should be using two-word, novel two-word combinations, so not just echoed, not just bye-bye, more juice, mummy go, daddy car, etc. by two years. So the language we use is around surveillance, screening and evaluation, or assessment, which is what we tend to call it in Australia, and that comes from the American Academy.
Surveillance is that everybody's business where anyone interacts with children understands development and therefore is able to provide, you know, an educated input to where the child is and whether we should be doing something more standard. Screening is the use of a tool to identify and refine the risk and evaluation or assessment is that complex process. aimed at coming up with a diagnosis. This is what the New South Wales Health Pathway is supposed to look like, although that middle GP allied health doesn't actually exist in the triangle.
I've added it in because clearly the top bit doesn't work without you guys in the middle. Surveillance happens through all interactions and should be based on the NERD Science Act early, so parent education so parents can also be aware of how their child's progressing. When there's a concern, tier two screening is ages and stages questionnaire, which can be done by GPs, can be done by paediatricians, but is primarily done in early childhood nurses. That middle section is actually where most people prevent straight to the GP or straight to the speech pathologist. Tier four is a paediatric review, which, as we know, happens in public, private and in some areas in community child health.
And then tier four is the multidisciplinary diagnostic and assessment services, which is a definitive diagnostic service when that's required. Children will need varying degrees of travel up and down that pyramid, depending on what they're presenting with. They may only need to see you, the speech pathologist and audiologist, or they may need the full team to manage neurodevelopmental complexity.
in the history of trauma etc to try and understand what's happening and build a picture of the child so i think you're all familiar with the blue book and um know the signs act early tier two as we've said is the child and family health nurses and i've taken that directly from your health pathway um in terms of being able to know what they do and how to take engage with the early childhood nurses and they're happy to be referred by gps I work in the TS service, tuberous sclerosis complex clinic, and a lot of our children initially have no developmental concerns. And I link them back in with their child and family health nurses for that ongoing surveillance and screening. This is what the pathway looks like here, which is a very comprehensive discussion about how to manage developmental concerns in preschools. And I hope everything I've said is consistent with this, as I did go through both of them at the same time.
I agree with everything that's written there. A slightly winky triangle. The Tier 3 and Tier 4 is undefined.
So unlike the work PHNs have done in lots of different PHNs across New South Wales, that work hasn't been done for Tier 3 and Tier 4. And it's always been different depending on which LHD you work in. One of the recommendations from the Henry Review specifically spoke to that. And we're in the process of doing a literature review and a workshop at the end of the month, really trying to establish minimum standards of care for both of those tiers to try and clarify who goes where, provide more equity and an evidence base for that. So what do we do?
We do evaluation or assessment. And our aim is really to identify and describe the difficulties. Is there a problem?
Is it specific or general? What's the severity? What's the impact? Are there any comorbidities?
What's the etiology? How can we best support this family? What's the prognosis and the recurrence risk? All the questions we try and answer.
That's us, lovingly called the Tin Shed, currently closed due to sewage issues but we do hope to go back in the new year. We are a small team of doctors, psychologists, social workers, admin and currently a speech pathologist on some very soft funding. We sit with community child health we sit with speech and language therapy from sydney children's and from cafe which is partially prince of world and partially sydney kids and that we provide a service to three big areas really so we provide the tier four assessment for northern sector of sessilent we provide tier four assessments for children across from the hospital so those are comics complex or chronic disorders so a lot of the oncology kids and neurology kids complex epilepsies etc and we provide the same tier 4 assessment for children from all of the rural and regional LHDs where there are no DNA services so the DNA services are all crowded down the east coast so far west we're in Viji western we service all of those populations as well. We also provide tier 3 assessment so this is you your GP referrals coming in and we will provide those tier three assessments um which are different to the tier four assessments where we've received a pediatrician referral from the hospital from Wagga um or when we've assessed them as their pediatricians we will also send them on to a multi-disc team assessment as required So that's what we aim to do, really putting the family at the centre, understanding the child from a strengths-based perspective, although by the nature of assessment it's often hard and it does tend to be focused on what children can't do.
It's important that we look at etiology and prognosis and support families to move through to the next stage. Obviously an assessment is the beginning of things and not the end. We look at developmental progress, intellectual ability and function. learning and academic difficulties, medical, behaviour, psychosocial and the family. That's the definition of global developmental delay as per DSM-5.
It is only for the under fives. It's a term used when you can't do an IQ test to reliably assess the child's cognitive level, which is what you need for an IQ diagnosis or an intellectual disability. You need to have, you need to have a significant area of difficulties in several areas of intellectual functioning so language problem solving fine motor social communication etc and as we've said it needs to be applied to children who are too young to participate in what they mean by standardized testing is standardized cognitive testing so you need to have the language of at least a two and a half year old to be able to do a WIPC intellectual disability is characterized by general you deficits in your mental abilities reasoning problem solving planning abstract thinking judging academic learning etc and it is both an impairment of adaptive function as well as cognitive skills and you need to have a normed cognitive assessment which says that you are more than two standard deviations below the mean and that you have an impairment in your everyday function and the onset is before 18 years and that's the diagnosis we make as soon as we can do a cognitive assessment for those children who's are unable to engage in cognitive assessments, the terminology we increasingly use is intellectual disability, developmental disability, not otherwise specified. That's our intake criteria, so we do a joint intake community child health, so the aim is that there's no wrong doors if they come to us but they need behaviour clinic or they need cafe, we try and do an internal referral.
We see preschool children who are suspected of having a significant developmental delay or intellectual disability and or autism and children up to eight years who are suspected of having autism spectrum disorder really trying to capture those children who are usually cognitively able, new social difficulties and behaviours are not really presenting a problem until they're into formal schooling. As I said we only take GP referrals from the northern sector of Cessna and but we've also take referrals from everybody else in terms of allied health and early childhood professionals but we will ask for a GP referral from a hospital perspective but also in terms of keeping children logged into their GPs which we think is really important. We've talked about rural and regional children and chronic and complex children from Sydney Children's Hospital.
That's our telephone number and our fax and our email and it's all on the website as well if you google Cumberton. This is a schema we wrote a couple of years ago, but it might help clarify. It's really about what's your developmental concern and the degree of concern.
So if you have one area of developmental concern, for example, speech therapy or fine motor skills or gross motor skills, then it's appropriate to refer to the Allied Health Service that you need or the early childhood nurses for a review of all of the needs. Obviously, the PEDS is gone now. That would be the Science Act early.
There are two or more areas of concern that come through to us and then we can make a decision whether community child health is a further screening or whether they need to come through to us for a tier 3 or even a tier 4 depending on what their needs are or we've done a clinical intake. If the problems are primarily behavioural, child and family is the place to go although they really prefer that the parents make the referral not the clinicians and there's a telephone number. So as we've said, it's important to establish a diagnosis for lots of reasons.
It does allow us to provide diagnosis-specific intervention and support. So we are getting to the point of smart diagnostics, smart care. We're not there yet, but at some point we hope that when we have a genetic disorder, we can give a specific intervention. It allows us to look for other difficulties. So if we demonstrate to George, then we look at cardiac, we look at immunology, we look at calcium, et cetera.
When we have a diagnosis we can be much clearer about prognosis, we can talk about recurrence risk and families can make decisions about their family, we can end the diagnostic obitacy which often avoids expensive and invasive ongoing tests and we can lead families to specific intervention services or often it's family support and just being linked into other families who've got the same diagnosis of you is really helpful and it can bring closure for some families although it can be normal. The causes are really divided into prenatal, genetic, dysmorphology, syndromes of unknown origin, which the numbers are shrinking now that we have next generation exome sequencing, and acquired infections in utero, perinatal, and postnatal, and you won't be surprised by any of those. In terms of investigations, our yields are going up now that we have a much broader range of genetic testing available. and they're just the numbers I thought you'd be interested.
Genetic testing requires a pediatrician and a discussion with a clinical geneticist to be able to action that under Medicare. Just put that in so that you've got some information about metabolic disorders. Increasingly, we're recognizing rare but potentially treatable metabolic disorders, and so although the yields are quite low, we do tend to have a much higher index of suspicion and looking for metabolic causes sooner than perhaps we would have done in times gone past. Things to really be thinking about, regression, microcephaly, microcephaly, dysmorphology, the more significant the delay, seizures, and any neurological findings, gait, asymmetry of tone and power, abnormal movements, etc. Those are our current investigations.
I've just done a big literature review and we will expand our metabolic bloods really that increasingly that's being recommended. Additional investigations really clinically led depending on what you find. Neuroimaging is always a clinical decision on balance of information against the risk and particularly that most of the children need a GA. Management really depends on what you find. A single area of difficulty versus It's global developmental delay, intellectual disability.
And then it's about matching the child's needs and the family's goals to the right support and intervention. Speech difficulties, audiology is essential. Making sure there's no significant ENT problems and engaging with speech pathology.
Gross motor delay, really important to get a good neurological examination and measure and note and track the heads of headphones. physiotherapy and often worthy of a peer review. Pencil paper skills again making sure that we're not missing a neurological problem, not missing a visual problem, occupational therapy and often preschool where you get exposure and opportunity to engage. Whether as a global concern we would ask that for examination, audiology review, peer referral or referral to one of the developmental services and which is how I've bolted it and... Lisa's here and we'll talk to you about it in more detail, but a referral to ECEI and discuss early education with families.
So getting kids into early intervention and preschool education is one of some of the most important things we can do. Now, I did show you the diagram of what the system is supposed to look like. It doesn't look like that. It looks much more like this. But essentially, when families are worried, they either turn up to allied health, general practice or the early childhood child and family nurses.
and we need to have a system where we get all of those children reviewed initially by the GP, those that require peer review and then on to multi-disc assessment as required, but linking them back into early intervention and education where we can support the children to make progress moving forward. It is complex because we're all paid for by different people and different systems and we all use different language but we do. need to support families particularly our more vulnerable families to navigate this really complex system so in summary um developmental surveillance is essential um especially for those at risk of developmental vulnerabilities showed you the red flags and they would always be my take home never ignore a parent's concern they're usually almost always right and they um they should be followed through um if the parents are concerned if you're concerned preschool teachers concerned there should be some screening or assessment and really the assessment type depends on the concern and the age and early diagnosis as we've said allowed at any intervention which enhances long-term function and probably the last and most important thing is to say that anyone with developmental delay intellectual disability needs ongoing routine medical care and it's essential that they have a good relationship and ongoing contact with a known gp so that we can then having tackled the developmental end of it, we can start to talk about the health outcomes of disability which is another whole talk in of itself, but as you all know children with disabilities end up being adults with intellectual disabilities with really poor health outcomes and linkage with the GP is definitely essential to improve that.
I've got loads of references where anyone wants to lead and I'm very happy to take some questions. Thanks, Vanessa. Really appreciate you coming online this evening when you're feeling somewhat poorly.
There's just one question that's come through, which I guess is probably open to most of our panellists tonight, is where do most of the concerns about developmental delay originate from families or others? You've kind of mentioned... So I don't think we're very good at systematic universal surveillance so most of them come through concerned parents, grandparents, aunties, uncles.
It's often very hard for parents who are either isolated or with their first child just to know what's normal and that's why the Names and Signs Act early parent information and education is so important because it helps families understand expectations. It's generally parents and principal. That's who we get most of our referrals via the GP, but that's where they come. Or someone's raised a concern, they've seen a private speech pathologist and the speech pathologist has said you need to do more. Thanks, Vanessa.
There's no other questions currently. So we will move on to our second presenter for this evening. Dr Zoe Case is a clinical GP in Bondi Junction. She has an interest in antenatal care and hence a lot.
sees a lot of pediatric patients um dr case is going to be going through a few case studies um this evening um alongside dr sarcosy um obviously i'm zoe i'm a gp thank you for giving this opportunity to learn and to learn powerpoint so apologies would be a bit average and some slides might be a bit busy um but basically uh this is just a reflective case study um for me and i guess for all the other gps um joining us about how we can learn and I guess be better maybe or improve or learn a new service. And so Vanessa and Elise, just chime in because this is just cases that I've had and put together. So obviously we're like superheroes like down the bottom.
And so of course we always pick up everything, right? It's not always the case and it's quite difficult because I find like all of us, I imagine that. When a parent or a caregiver comments on a potential developmental delay or behavioral concern, I personally find it's never convenient. In fact, it's usually the most inconvenient time.
It's usually when we're about an hour and a half late. Someone needs to be fit in. And it's a child with a runny nose. And you sort of check them out and you reassure them. And it's like, oh, by the way, actually, we've been really worried.
Yeah. Oh, Daisy's been tripping at school. And oh, yeah. No, we're really, really worried.
oh okay and so I find um the idea that one in six children at some stage can have um you know a behavioral concern or developmental delay is quite quite a lot I mean a lot of us would see maybe six patients a day that are children um and so I guess when I was reflecting one of the things I thought in GP for me as well that I you know try and prove try and do better that's probably me in the corner with the kind of you know a bit upset um there's too many people in the waiting room and trying to get through it But that idea that, you know, really in my mind that early intervention is improved outcomes and, you know, it can be the difference between, you know, us getting them back. Maybe the difference between them having something found and early, you know, intervention pathway beginning rather than us sort of going, oh, yeah, and then they not present for another six, 12 months. So that's something I guess I was reflecting on.
Okay, so a case study was a. little three-year-old boy I didn't have so long ago come into the practice. Completely new patient, I hadn't met the parents and dad came in and dad was really concerned about, he just said, you know, I'm concerned about, you know, Mr Zed, Master Zed. I just wanted to have some friends at daycare. He's got no friends, he's playing by himself and daycare has also sort of mentioned it and the child was in the room and I was sort of like, oh, how do...
Nice to meet you. And I sort of saw the child and, you know, as we sort of went through it, he wasn't using simple sentences and his speech was sort of around a two and a half year level. He had, you know, one friend only and he didn't like to be touched.
He sort of froze up. He was unable to play and interact with a friend appropriately. And he was often playing by himself at daycare. He had obsessions with helicopters and mechanical items and was obsessed with the mechanical items in the room. So these are often quite...
difficult consults I find. And, you know, he had limited eye contact. He was sensitive to noise and he was overwhelmed by too much. and it seemed to be that his other developmental and medical history was normal. I'm a Queenslander, so I'm allowed to have Queensland guidelines in my room, and I cheat often.
So I basically have the developmental guidelines from the Queensland government, the red flags, which is early identification guide. I actually have the laminated version of the little cheat sheet of the milestones. laminated behind my computer so I can pretend I remember them all and I just kind of glance over the computer and I can't see them stuck on my wall.
Like that's in addition to the blue book. Obviously the blue book check is you know what we all go through but I actually put the, I'll show you what I think it's the next slide, and that's what it sort of looks like on the website and that is what I have laminated behind my computer but I'm sure everyone else is very clever. on the webinar and just knows it all off by heart but sometimes I do reference it if I'm busy or late or I'm not sure it's nice to have you know the red flags as well which that strong parental concerns is obviously a big part of it so there is a reference up there if anyone wants to grab that but you might not be a Queenslander you might prefer the New South Wales guidelines or Victorian guidelines we all you know work in different areas and feel free Vanessa to chime in if you don't.
like them for some reason or something no i really like them and anything that's got pictorials is always helpful i think none of us hold this in our head and it throws you the minute you get a really tall kid or a really small skinny kid anyway so i think it's useful to have a reference to go back to um so i think anything that works for you is great but i do like the queensland ones i've also have those you um okay so we can all agree he was delayed in more than one area in communication social emotional delay um he was age appropriate for gross motor and fine motor skills self-care seemed to be okay um and you know is it globally developmental delayed because he's under five which he was i'm in more than one area and he you know his symptoms were consistent with autism which i found reasonably awkward at the first meeting of the parents um because i just wanted his child to friend um so obviously the what now um what else do we goes through our mind um what does it trigger for me triggering number one is that time thing so sometimes breaking it down and getting back agreeing with them that you want that child to have a friend um and you might you might think this is now incredibly inconvenient because i'm like three hours late um and i want to spend the time with this little boy and his family to help him um you know for us to work out um where is he at how can we help him and to get a proper assessment Um, obviously a lot of that goes through our minds. Um, but also what can we do now? What can I organize now? Or when I say now it could take a month, they could come back once a week. We could do telehealth follow-up just to start things rolling between yourself.
And if you have the luxury of a wonderful nurse, like I do, um, letting them help you help the family as well. So, um, certainly, you know, you flag in your mind, does he need a hearing test? Um, is he good on that?
Um, you know, does he need, um, OT and I don't know if I've missed a slide just check no I haven't and you know the nurse in fact helped find an OT local to where they live that would go to daycare and you know we also thought about speech therapy plan to have him commence and obviously you know making sure there's no ENT issues or that could mean he can't hear properly hence trying to encourage him to get hearing test. parents were completely overwhelmed. To me, it's like, oh yeah, like, right, so go check a hearing, and the parents'face just kind of dropped.
I was like, oh, okay, we're going to start with one thing, and we're going to come back, and so we just saw him once a week, either the child or the parents, for about four weeks, just to slowly, you know, work out where they wanted these services and the timing, and my nurse really helped a lot, because she also organized a lifestyle referral. So the beginning of a referral process, as I understand, GPs can refer without a diagnosis and we don't have to diagnose these children. We can, like say we're concerned and we think they might have autism, but we know that on two milestones they're behind, so they're equal developmental delay and we can get the process running for funding.
So we can actually refer to Lifestar, which, as I understand, is the beginning of NDIS Fundy. And we can explain to the parents that it takes a long time for diagnosis and diagnosis may change over time. And it might be two years before this child's, you know. diagnosed properly like they might be searching for or we might be searching for but but the really important thing is the treatment can start now so it kind of doesn't matter well that's the way I see it what do you think Vanessa? I would agree I think it's it's much more about identifying difficulties and putting in the support and the diagnostic process I mean even if you could do it tomorrow so if by some miracle I didn't have a waiting list and I could see the child the next day you we wouldn't be able to make a diagnosis.
You can't make a diagnosis of autism in a child who hasn't had any intervention. So it should have at least six months intervention in terms of being able to, you know, if this child's got a language disorder, you work on that, you do some play and suddenly he's much more engaged with his peers, then you don't have a diagnosis. So intervention is important to get going early.
And that's really where the important bit is. identifying the problem managing the problem and the diagnostic process happens alongside it um but the report we get from the speech pathologist the report we get from ot the fact that they may now be eligible for some inclusion support at preschool all means that we've got much more information to work with when we actually see the child to make a diagnostic decision and in the meantime you know his gloria has been managed uh and he's making gains um which are really important so i would agree it's responding to the to the family's concerns and and what you've identified and working through it sequentially and it is overwhelming it's overwhelming when we make a diagnosis and we give you know 12 recommendations um and we have to just support families to um identify where their goals lie and you know they came to you most concerned about his friendship so you know that's what you number one way of what can we do that could be the speech pathologist could be the at works with those or inclusion supported childcare um but you're moving the child forward. Yeah, so we just actually did two things in the end. We referred for a hearing test and BOT and then obviously had an amyloid supplant when the parents are ready, maybe speech, and obviously for the paediatric development assessment to Tomatin. Thank you.
Obviously I find hopefully the other GPs have had the luxury of having Tomatin assessor patients. And it is a luxury to have them so thoroughly assessed over time and they get them back. Vanessa, is there a sort of a standard if you get them back at two, you get them back at four sort of protocol or not really?
No. So those are clinical decisions. So if I meet a two-year-old and we don't make a call, then maybe we might review them at three.
But if you see them at two, they've got a clear diagnosis. You've got a clear intervention. You've got a clear. team around them, there's a private PEED involved, then we wouldn't plan to see that child again until we're going to make a difference.
So the next time we make a difference is school planning. So, you know, are we able to get a cognitive assessment? Are we able to make recommendations about where this child is best placed within the educational system? So it really depends on what you're finding along the way.
Many of the developmental services don't do reviews. We feel strongly that that's an important part of what we do, particularly because we encourage to see the kids. the little ones and you know a child at two and a child of five we there's no way we could anticipate what that child needs at five so we do bring them back in and try and get cognitive assessments before they head off to school and sometimes we send them away and say you need need more intervention you know we've discovered that you're deaf today and you know all bets are off until we get your hearing sorted so so those are entirely clinical decisions for each individual team in discussion with the family okay great um and and just um sort of flags that go off in my mind as well or just is this child a fussy eater is there an indication for a blood test not that i ever want to do a blood test in a child but is there anything else um i guess vanessa we're talking before about um you know in the patients that need a blood test like i personally as a gp will sort of only do blood tests in the children if i think obviously they're incredibly tired or pale i think they're anemic or there's an issue um I usually leave it up to the pediatrician or automaton to do any genetic testing. And as you mentioned, you sort of filled me in that that is the only way appropriate way because you yourselves need to be in contact with a geneticist. Is that correct?
um so there's two tiers of genetic testing so cghra and fagellex are now standard of care now they're you're all gps and you can correct me my understanding was to get that medicare rebated so there was no cost to the family you needed that to be a p referral or p request next section next stage sort of second line um assessment is hold x over sequencing is what we're doing in our area different people do whole genes you know etc and that's a and they're trying to do triam sequencing where you sequence mum, dad and the child. There is a New South Wales led process for that in terms of consent. And part of the process is that the paediatrician needs to discuss it with a clinical geneticist that it's indicated. So that's only for the under 12s, moderate to severe developmental delay or intellectual disability in terms of those testings. um and that's relatively new what two three years now that we've had access to that funded through medicare but those are the requirements for medicare i don't know whether gps can ask for cghra and the family not get billed but i would be happy to be told otherwise okay and i mean some gps might already know um the cost and if they order them um but i i certainly don't um also because to be honest i don't i don't want to deal with the answer i don't know what i'm going to do then um so i think well if I'm not confident with the answer and how to manage it, then I shouldn't order the test.
I would agree. I think it's a big deal doing a CGH array. You can open a whole can of worms, including, you know, impacts on families for you're finding genetic things that run in families, impacts on other people's capacity to get insurance.
Potentially there's a moratorium on that at the moment, but I don't know how long that's going to last. Implications around the parents'health, siblings, et cetera, and non-paternity. So, you know, and I think it's really important that if you are doing a CGHRA that you spend that time doing informed consent. I tend to give my families a handout and be really clear.
You are looking at the whole genome. We might find things that have got nothing to do with the developmental delay, but have got significant consequences for you and your child, potentially long term, you know, BRCA1 or whatever. We, our local lab are quite careful about what they report, but not all labs are.
um and that um we may not end up with an answer um we often find variants of unknown significance which means that a genetics referral blood test for mum and dad and and at that stage if dad is not dad or mum's not mum then we will demonstrate that uh and families need to know that before you start going down that pathway yeah yeah um obviously getting back to this case study um you know um it was that conversation around mum and dad as well um that This can be a long time. It can be quite stressful and encourage them to go back and check in and think about themselves as well and get their support, whatever that may look like for them, and visit their GP and make some time to initiate that self-care as well because, you know, all of us are stressed, but I think it's incredibly stressful to, you know, have a child that you're unsure about the needs and in addition to normal life. The case study too is more sort of looking backwards at a patient I have who's now four and I guess I was just reflecting the times where I saw the baby and it was sort of a for me an interesting because I work in a private medical practice.
I do have patients that go off quite early and see the private pediatrician and it's just also re-establishing and reflecting on that role as a GP because we always do see them for vaccines. sometimes the parents'health, always the parents'health, and they bring the baby or they'll start commenting about the baby. And this was more a case where I sort of, on reflection, as it goes through, I sort of saw that we should actually be inquiring around barriers to accessing a paediatrician and are they actually going, you know, because one thing is to refer them off to speech therapy or OT or the hearing check. or the pediatrician thing off my list but if you don't revisit it over time when they come back for say another vaccine or mum and dad are in like did they go how are they going with it and this sort of case showed me actually not all the time are they going or able to come forward or access so yeah I guess that was something that I've reflected on and obviously Vanessa you know how long your waiting list you Too long.
We do have the two tiered approach, which is helping what helps with our local kids, actually more than our rural and regional ped referrals. So. I mean a four-year-old would be tricky because he needs an IQ test so our sort of tier three of medical plus or minus speech which we can sort of get kids in early and moving whereas once I need a psychologist I have a very finite number and he would need a cognitive assessment so it can be up to 12 months at the moment to get into the multi-disc team with a psychologist.
Yeah, so he, I think it was at about 40 months old where I think, you know, we're giving him the vaccines a bit late and he was always on a PED for reflux. And, you know, he wasn't having sounds or any babbling that the parents could recognise. So they went back to the PED that he'd already seen.
And then that was sort of off my list. And the PED was managing him quite well. She referred him to speech therapy, hearing checks, that sort of stuff.
And he improved with his speech, yet on review, you know, there was behavioural concerns. Subsequently, about a year later, I think when I might have been inquiring with the parents, I've lost my cursor. Sorry, went a bit quickly.
And then, pardon me for going backwards, he at about, you know, 24 months, I think, he sort of was having behavioural concerns, separation anxiety, poor sleep. and there was sort of mild speech delay. He was under therapy for that and again I wasn't inquiring very much on reflection because they don't come in after 18 months. There's a big gap between that and four years but mum and dad often do or if they have a fever they might actually not see you, they might see that GP who's on. But when I inquired you know with mum one flu vaccine basically they had access barriers.
They'd moved away. They didn't have the money. The paediatrician had a long wait list to even get back in for a review.
So they actually weren't going very much at all. And we referred to Tumbleton with the private paediatrician agreeing. And speech therapy was under Sydney Children's Hospital. He was seeing psychological therapy privately.
And the private paediatrician had organised some NDS funding. He was seen by Tumbleton at two years and eight months. and it's very comprehensive, the assessment, but he didn't have a formal diagnosis of ASD. As you mentioned, you review them over time.
Isn't that right, Vanessa? Until you sort of definitely, yeah. It's a criterion-based diagnosis, so there are some children that you can diagnose the first time you see them because they're clear. DSM-5 is trickier in the little ones than DSM-4 used to be.
But, yeah. it's often they just haven't met diagnostic threshold at that point in time or other diagnosis or findings are more likely to explain the presentation yeah so that stage he wasn't um he was diagnosed oppositional behavior separation anxiety emotional dysregulation and all the therapy sort of continued um and um you know an appointment for the flu or something um again you know mum broke down um and that was sort of more more recently in the last you 12 months I think um and basically we did the classic uh or I did the classic uh I don't have time now come back um and let's talk about it or telehealth we sort of went through it and he was having sort of more behaviors with tantrums frequent meltdowns couldn't cope with changes fussy eating um emotional dysregulations obsessions um and it was affecting the family greatly and they weren't coping and I actually saw mum first not the child and mum had a and the postnatal depression scale of 29 out of 30. So that took my priority which is incredibly high and obviously I had to prioritise mum and her mental health because he had the funding I was able to write a letter to daycare and they actually were able to fund a staff member to be on and for him to go into daycare five days so we could focus on mum's mental health and obviously we continued the supports for the child with a psychologist. And he had a history of in the past, the pediatrician had done a blood test and this child, there was no way I was referring for a blood test because of his behavior. So we just put him on, we did a bit of a dietary assessment, put him on some iron.
And just a question around that, Vanessa, what do you do? Like, is there a specialized service with these children if, say, you really want a good blood test or? It's a challenge.
So we don't, Westmead has a quiet pathway. We don't have that yet. So we tend to use the child life therapists. So we use form play therapists who are amazing at using distraction and support. If that doesn't work, we can admit them through the nitrous pathways.
Although many of the kids with autism and intellectual disability will not find nitrous particularly soothing. So then you're really looking at a GA and that's tricky. A lot of these kids really struggle with their teeth as well.
So I tend to have them linked in with the dental hospital and kind of double whammy the dental and the bloods and anything else I need to do whilst they're under, including immunizations at times. So it's a balance of trying to get it. We don't want to traumatize children more, you know, by sitting on them to get the bloods.
But I do only use the people at the kids hospital who are really used to doing children. uh and um we can ask the child life therapist to support the family through the process and that it gets a significant number of kids through successfully uh and then if that doesn't work then we need to be thinking about other things you know do they need a beer so they're having a ga anyway um are they coming in for an mri because of their degree of their delay and then i just try and piggyback on um blood tests onto that okay um Yeah, so my practice nurse rang up Tomerton, even though it wasn't the right interval, to review very kindly. They facilitated an appointment and saw him earlier and diagnosed him with autism spectrum disorder.
And NDIS funding, it seems like improved funding came through. Is that right, Vanessa? I'm not across all of the funding in the magic world of that.
I think having a diagnosis, and we've got an expert on the line, so I won't talk all of that. But... A diagnosis often facilitates a slightly different package because more needs have been identified, I think, is the way it works. But I'd let Elise answer that. Oh, Elise.
Yes, please. Yeah. Theoretically, the diagnosis shouldn't make a difference to the funding package because it should be done on functional needs and functional presentation. But obviously, if over time that functional presentation has deteriorated, you mentioned increased behaviours and stuff, then that would be else assessed. So it shouldn't be assessed.
I've actually got a point in what I want to say in that it should be based on functional needs, which shouldn't change just because a diagnosis label is put on top of it. But obviously if in 12, 18 months, two years, needs do change in children. So that could be the case there. Yeah. And then, you know, OT obviously increased support by childcare, psychological services.
And then I regularly make sure I check in with mum and the family, just ongoing now because there's so many. things going on with mum's mental health etc as well um and at the moment I think we're pending and wondering if he needs a GA with an ENT review because he's a snorer and a sleep study and blood tests and foil vaccines because they've been delayed and if he needs them all at the same time um so that's a bit of a tricky one at the moment um and um Vanessa do you have any um comment on access to you know as in throat specialists publicly or anything in with these children obviously we're going down the private route because the parents can afford it but um you know what's it like when you have um these complex behavioral presentations where you think there could be lots of layers worsening behavior um so it's just a matter of prioritizing sort of working your way down the list often um i ent has as big a wait list as i do um but they will triage on clinical urgency so you So, you know, for example, if you think of the foreign body in his ear, that, you know, puts him to the top of the list or his nose. And so I tend to be the dialer registrar and have that discussion about my concerns about the particular child.
I also tend to alert them if I've got a child who's really sensory, that, you know, outpatients, it's not a great place to spend time. And, you know, I ask that they get first on the list or last on the list and supported in that way so that they at least. the process is smoother um through and and certainly if anyone's having a ga they're quite good dental guys are good the nt is good in terms of sort of saying you know your patient is coming in do you want anything else done uh i would try and coordinate so we maximize what gets done at those times okay great um well um and so then yeah i guess takeaways um for me uh when reflecting um and feel free obviously Elise and Vanessa to say what else we can be doing is for me that even if you know obviously child development we need to find the time if we notice something a parent comes with us to concerns and we must address it to look at in thoroughly at the development behavior.
And we must ongoing review and see if they're engaging and how the parents are going. It's actually going to these early interventions and obviously early referral and early intervention is essential. While they might be waiting six, 12 months or longer to get specialist review, just sort of giving a referral and thinking it's next week is not actually reality, unfortunately.
I don't know how everyone else feels. I feel like the wait list has gotten a lot worse after COVID for paediatricians. I'm not sure if that's reflective in actual reality, but, yeah. Yes, so that's over to you, Anna.
Thanks, Chloe. Sorry about the PowerPoint learning. It's fantastic and colourful.
Thank you very much. Just one question. Vanessa, the service that you mentioned that supports vaccination, blood tests, et cetera, for children with sensory issues or challenging behaviours, can GPs refer to these services directly? Say, for example, for a blood test or for a vaccination or do they have to be?
There is a vaccination clinic at Sydney Children's, so that's where I would refer to it. So it's run through our patients and they can support. support families to access vaccinations and again they've got hands on deck and they've got you know quiet ways and supportive in that way in terms of them coming in and they need to come in under someone so you know if they're coming in for any of those investigations then I'm the admitting officer so that there does need to be someone that owns them in the hospital so there does need to be for that discussion with you know lots of the peds would have you know the VMOs would have admitting rights or ENT obviously have their own.
systems and surgery dental um they all have their own ways of doing that but certainly if you've got a child you can't vaccinate i would start with a vaccination service um and um in terms of pathology it's a walking system as far as i understand it at sydney kids and you can let families know to ask about organizing the um um child life therapists okay that's what we used to call them thanks vanessa um There's some other questions that I think sort of got covered off with your comments and discussion during that presentation. So we'll move on to our last presenter for the evening. Zoe, I will ask you to stop sharing your screen as I introduce Elise Lee. So Elise is the Manager for Early Childhood Projects at Lifestart, which is an NDIS partner delivering the early childhood approach.
I'm sure Elise will also cover off the difference between the early childhood. approach and the early childhood early intervention. Elise is a speech pathologist and has previously worked in disability and community health. I will also say that we do have Hassan Hawatmi, I hope that I've pronounced that correctly, who's also online from EACH, which is the early childhood approach partner covering a small part of the Sestran region over in Canterbury and Bankstown. So I'll hand over to you, Elise, to share your screen.
Thank you, Hannah. I will just get this all up. Yes, as Hannah said, my name is Elise and I will be walking you through what the early childhood approach is this evening.
As both Dr Sarkozy and Dr Case have mentioned, we are one of the potential next steps if you do identify concerns in development. We'll talk a bit more about how we go about referring and things like that. Just before I begin, I would also like to acknowledge the traditional owners and custodians on the country on which we all meet today and their continuing connection to land, sea and community and I pay my respects to their elders past, present and emerging.
I would like to extend that acknowledgement and respect to any Aboriginal and Torres Strait Islander people who are here today. Abbreviations before I get started, just some of the common abbreviations that I will be using as I talk to you this evening. The NDIS is the National Disability Insurance Scheme.
which is different to the NDIA, which is the National Disability Insurance Agency, who are the government body that run the scheme. I do tend to use them both interchangeably, but there is a slight variation in them. EC is the early childhood approach, which was up until fairly recently known as ECEI, which was early childhood early intervention.
It's basically been a rebranding, a reset by the NDIS. So you may still hear ECEI thrown around. It may still be written on documentation, but it is now the Early Childhood Approach is the name.
EC Partner stands for the Early Childhood Partner and Life Start is one of the early childhood partners in New South Wales. So when a family seek NDIS support, the child and family will be connected with an early childhood partner who has been appointed by the NDIA to deliver the early childhood approach. As the early childhood partner, the staff will work with the family to understand the needs of the child and family.
Our staff are from early intervention specialist backgrounds. So we have occupational therapists, social workers, speech pathologists, physiotherapists, early educators, psychologists and behaviour clinicians. We are one of six early childhood partners in New South Wales. So we cover the Illawarra, Shorthaven, Nepean Blue Mountains, Central Coast, Sydney and South East Sydney regions. Hassan tonight is here from H and they are an early childhood partner covering southwestern Sydney which recently also includes the Canterbury Bankstown LGA and that's probably where it's relevant to those here tonight but they also cover all of southwestern Sydney and a lot of southern New South Wales and I should know more areas Hassan I'm sorry I don't but yeah they're more of the south.
You mentioned them all I'd like to add also we cover ACT. and greater upswitching Queensland. Thank you.
So to support children with developmental concerns or disability, the NDIS developed the early childhood approach. So this approach supports children aged 0 to 6 up until their seventh birthday where there may be developmental concerns or disability. It recognises, as Dr Sarkozy so eloquently put it earlier, that the... a child's early years are important for their long-term development and help lay the foundation for their future abilities.
The EC approach is designed to help families and carers to achieve the outcomes they seek for their child. This is done through activities that help them learn the skills they will need to take part in their community and achieve the best possible outcomes throughout their life. A diagnosis is not required for children to access supports through the EC approach. You may like to refer if you've identified areas of concern as both Dr. Sarkozy and Dr. Case were presenting. while concurrently following those other pathways to potential diagnosis and other investigations that you're doing.
Just a quick note on, I guess, best practice in early intervention and the models that we follow and that we try and encourage families to understand. The early childhood approach is built on what we know and understand about how children learn and the best ways to help them learn. One of the key features of the early childhood approach is recognising the important role that parents, carers and teachers play in supporting a child's development. As you can see, while therapy is important, this picture clearly shows important roles that childcare or school and parents and carers play in a child's development.
So to that end, early childhood supports are offered in a range of everyday environments. So we'll go to the home, the childcare, playgroup, community activities. We support parents and carers to help their children develop a new use new skills because we know that children learn best from the people in their lives who are of most importance to them. So best practice really focuses on building the capacity of the key people in the child's life to implement strategies in everyday routines and environments which then gives the child an opportunity to learn these new skills and practice them many times throughout the day. So if you were to refer someone to us at Lifestart or to each This is kind of the pathway that the child would be following when they come through our doors.
It will look a little bit different for every child and family as it's based on individual needs, but this gives us a good idea. So referrals can be made to us by parents or they can give consent for someone else to refer to us on their behalf. So educators, allied health professionals, GPs, pediatricians, anyone, as long as obviously we have the parents'consent. It's important to note that our effect.
referral is not an application to the NDIS as such. It's just a referral to enter into the early childhood approach at this stage. It's also probably, as you were talking then, important to note that it is an opt-in service.
So we will then obviously call the family and offer them the service, but we can't force them to go through with the process. No diagnosis, as I said, is required to gain access to the early childhood approach. However... If a child does have a diagnosis, once they do make contact with us, they may follow a slightly different process and go directly for access once they come into the early childhood approach. Once the referral is made, the family will be contacted shortly after by a local lifestyle or each staff member who will start to gather some more information.
Based on this information, we may invite families to workshops we have on offer, provide general strategies to start using, general parenting strategies. and connect families to local community and mainstream supports that may be appropriate. We will at this point as well also support linkages into things like early childhood services if the child isn't engaged in a child care or preschool service. The aim of early connections is to build on the families, carers and children's strengths.
Staff will complete visits, as I said, online, at home or in various community environments, such as preschool or school, to gather further information, conduct observations and complete assessments. They will also follow best practice strategies to provide advice and information to support the whole family. After we've kind of gathered the information and started to look at what's going on for the family and child, we may then start to offer a child early supports. So this is a period of short-term early intervention.
where there are concerns regarding the child's development by a member of our team. This is likely to look different, again, depending on the child's and family's needs. These supports are offered on a short-term basis to provide families with strategies that will focus on increasing their skills to support their child at home in everyday life and working towards the goals they have for their child.
So some examples of this could be that we establish a bath time routine with a visual schedule or explaining sensory processing and demonstrating sensory activities. that might assist a child to participate in dressing. Short-term supports may also include visits to other settings a child attends regularly such as preschool or childcare centres and these visits would be focused around supporting the staff to better understand the child's needs and include them in all the activities during the day.
Each child's progress would be monitored against their own goals and we will be constantly reflecting with families about where the child is up to what they've achieved. If at any point so either through our early connections information gathering or at any point during early supports, we identify that a child meets the eligibility criteria for an NDIS plan. We will support the family through the process of requesting access to an NDIS plan. The NDIA have established eligibility criteria for children who may progress to accessing the NDIS and an individualized package of funding.
To meet this criteria, children need to have either a diagnosed disability or be under six years old and have developmental delays that result in significant functional impact on the child's everyday life in areas of communication, self-care, play and learning, physical development and social skills and these delays will need ongoing support. I'm going to talk to the criteria and legislation in the next slide. If a child transitions from early connections to become an NDIS participant then they will need to be in a position to be able to access the information that they Use the information we've already gathered about goals and assessments and connections with community and mainstream supports to help create the NDIS plan.
Once the plan has been approved, we as the early childhood partner will explain the plan and support each family to link with their chosen service providers who will continue to work with the family and the child towards their goals. We as early childhood partners are responsible for monitoring the use of the plan and we check in periodically. periodically with families to ensure that they are actually accessing services and able to access what they need.
Obviously, probably all aware that wait times obviously can be challenging, especially when families get their first plan. They can be awake before they're able to link in with the allied health services that they're after. Some important notes to remember around individualised funding packages. So while the partner staff, so each staff and Life Start staff support families through the process of applying for access for individualised funding, the amount of documentation and evidence required by the NDIS for access approval can vary as it's very much an individualised approach to support. All aspects of individualised funding packages are governed by legislation.
It's our role as the partner to provide an accurate picture of the child and make recommendations to the NDIS regarding funding under what is referred to as the reasonable unnecessary legislation. This information is reviewed by the NDIS who then make the decision about what is approved. The most important thing to remember is while the funding is important, it's the goals that the families want for their child that should drive the development of the individualised plan.
So developmental delay, and as Dr Sarkozy was talking earlier, I was madly making some additional notes. Developmental delay. the way that I'm going to use it tonight is a legislative definition.
So it's slightly different to the definition that Dr. Sarkozy presented earlier. The names are the same, but for the purposes of this conversation, this is the criteria that's needed to meet access for an NDIS plan if a child doesn't have a diagnosed disability. So developmental delay by the NDIS is defined as a delay in the development of a child under six years of age that is attributable to a mental or physical impairment.
or a combination of mental and physical impairments and results in substantial reduction in functional capacity in one or more of the following areas of major life activity. Self-care, receptive and expressive language. cognitive development or motor development, and results in the need for a combination and sequence of special interdisciplinary or generic care, treatment, or other services that are of extended duration and are individually planned and coordinated.
So if you are considering providing evidence of developmental delay, reports that outline the child's reduction in functional capacity in these four areas are really helpful. But as I said before, part of our role is to actually go in and gather that information. do observations and assessments and talk to the people that know the child really well ourselves as well. Whether a child does meet this developmental delay criteria, or there's a diagnosed disability, or they meet the criteria under developmental delay and then receive a diagnosis and have an NDIS plan, it's important to remember that the plan has been established based on that child's functional capacity at the time.
A new diagnosis will not necessarily mean that the child needs a new plan to meet the diagnosis. as presumably the child's functional capacity remains the same. The structure of an individualised funding plan is developed under the legislation and funding amounts are determined by the agency using that reasonable and necessary legislative criteria. This is based on the goals and requirements of the child and is based on best practice and is not calculated by external recommendations of a particular amount or intensity of therapy. However, if at any point the needs of the child changed, if new things emerge, if things that we weren't aware of at the time of planning...
come to the fore, it can be readdressed and the family can contact the staff member who has supported them through the plan and request that it's reassessed, in effect requesting an unscheduled plan reassessment. That used to be called a plan review, that terminology's changed as well, it's now a reassessment. Alternatively, a plan reassessment will take place periodically throughout the journey of the plan. The NDIS also uses the term developmental concerns, and you will see this if you look at the Early Childhood Approach website on the NDIS.
This is for children who do not meet the developmental delay criteria, but have some delays in their development. So early supports may be offered to these children where they're most appropriately provided by the NDIS. And that might look like strategies and supports to the family, links to mainstream supports, community and other services, and information and referrals. As you're, I'm sure you're acutely aware, we have many different government departments and each of them play a slightly different role in supporting people with disability. While the NDIS is responsible for funding individual supports for people with disability, it isn't supposed to cover what other agencies already cover.
New South Wales Health and Education also have some responsibilities in relation to supporting people with disability, in which NDIS is not the most appropriate agency to provide that support. So probably the key distinctions that are worth raising. tonight are the NDIS will not fund the diagnosis of disabilities. That's considered a health system support and the education system is responsible for making adjustments to personalised learning and support for students that primarily relate to their educational attainment. So the NDIS and EC approach is just one piece of the puzzle in supporting children and families alongside family and friends education.
health and community and mainstream activities. The early childhood approach is a really broad pathway of support that's based on the individualised needs of the child and family and assists them to access the most appropriate early intervention. And that is me.
I will stop the show. Thanks, Elise. Really appreciate it. There don't seem to be any questions that have come through. So thank you everyone.
Thanks to all the speakers and attendees for joining the session this evening. Really appreciate you devoting your time to this topic. To attendees, an evaluation survey is available and we really appreciate your feedback. Please fill that out so we can issue your certificates and also credit your RACGP points.
There is a link to that survey in the chat box as well. Thank you very much, everyone. Thank you to Zoe, Elise and Vanessa for presenting and Hassan for joining us this evening. Really appreciate you taking the time. So thank you very much.
Have a lovely evening and a nice weekend. Speak to you soon.